No Matter What Happens

Need to share

2012-01-09T20:03:00.000-08:00

Ya'll I haven't shared these feelings because I thought they would pass quickly as they usually do. I think they are lingering because I have been so sick & I am exhausted.

Anyway I have this heavy on my heart feeling the older I get about taking care of my children in later years. Then I worry about what will happen to them if something happens to Mike & I.

I know without a doubt that God has this under control. It's all part of His plan but sometimes, like now it's hard to let go. It's overwhelming to think of taking care of 3 children with extensive medical issues who are completely dependent as we get older & they grow.

I try hard not to dwell on it & most times if it comes to mind it does pass quickly. I thought maybe sharing my thoughts & feelings might help them pass & get off my mind.

This is lots of rambling because I can not get my thoughts in order. I think I need to sleep.

Heart thoughts

2011-11-08T13:32:00.000-08:00

Just needed to take a minute to share some thoughts.

Having one of my moments. I dislike this time of year really bad. Not the thankfulness or celebrate the birth of Christ but just this time. I miss my daddy & brother more than ever during this time & it seems to me our children's disabilities are amplified & they miss out on so much no matter how hard we try. If you understand how I feel I am sorry! If you don't understand how I feel I am so thankful!

For my dear friends who are celebrating this year without a loved one especially a child, my heart & prayers are with you. Thank you for allowing me a minute to share my heart thoughts honestly.

Michala's day

2011-09-20T21:50:00.000-07:00

Well it's September 21st. It's Michala's day as one of CURE Childhood Cancer 2011 CURE's Kids Conquer Cancer One Day at a Time. To those of you that contributed all ready thank you so much! For those that are interested in donating there is still time.

We really appreciate all the support. Thank you!!!!

Kelli
http://nomatterwhathappens-kelli.blogspot.com/
http://m.facebook.com/kelliskreations

Amazing day!

2011-09-18T20:11:00.000-07:00

Today our family had the privilege of attending Sunshine Family Fest at The Park Tavern at Piedmont Park for Camp Sunshine. It was amazing!

Always Saturday was the band who hosted it. KittyWolf and Mommie performed. The Monkey Dr was there too. I cannot wait to share the pictures.

I have a huge favor to ask. Always Saturday is giving all the proceeds of the downloads of their song Love is Plural to Camp Sunshine. My challenge is for everyone to give up something for one day that you would typically spend .99 cents on & go to the link http://www.alwayssaturday.com/10k.html to download the song. It's quick & easy & really a great song. Always Saturday's goal is 10,000 downloads for Camp Sunshine. Let's see how quick we can help them reach that goal. Thanks so much!!!

Kelli
http://nomatterwhathappens-kelli.blogspot.com/
http://m.facebook.com/kelliskreations

Hayden's golf benefit

2011-09-11T18:51:00.001-07:00

Ya'll Hayden is a precious friend of ours that has Lennox Gastaut syndrome like Michala & Abe. This benefit it to be able to get Hayden a service dog that will help him lead a more childlike life without so many restrictions. The dog will be able to sense Hayden's seizures and help keep him from harm. Please consider playing in the tournament or making a donation to help this wonderful family that is so dear to us. Thanks so much!!!

http://gak9.com/events/hayden_golf_benefit.html

My Concern

2011-09-08T07:01:00.000-07:00

Good Morning,

I just want to share with you a concern that is near and dear to me. My concern " childhood cancer" . As most of you know I have four children, three of which have special needs. Michala our middle child not only suffers from an extremely rare disease called Acardi Syndrome ( affecting less than 500 girls worldwide) but she was also diagnosed with Angiosarcoma a form of cancer that typically affects the elderly. Thankfully I am proud to say that Michala is a twelve year survivor of this dreaded disease. The purpose of this e-mail is to let you know that September is childhood cancer awareness month. Some important facts: cancer kills more children than any other disease, less than 2% of all federal cancer research dollars are spent on finding cures for our children, and still today childhood cancer has an 80% percent cure rate.

As part of cancer awareness month Michala was selected to be one of the faces of childhood cancer and September 21^st is her special day. Along with this great honor 11 Alive news reporter Julie Wolfe came and taped a short TV segment that was aired yesterday morning at 6:30 am. If you are interested I have attached the two links below ( 11 Alive and CURE ) that will give you more detail about our "special child" and the many other brave and courageous children who fight this terrible monster called cancer.

http://www.11alive.com/news/article/203004/460/CURE-The-Faces-of-Childhood-Cancer Michala 's video.

http://www.firstgiving.com/fundraiser/michalahopkins - if you have surfed this link – thank you. If you have surfed this link and made donations – thank you for providing support for the cure. The short video by Jeff Foxworthy is worth the time to watch.

Finally, the whole purpose of this e-mail is awareness. I have no expectations and you are certainly not obligated to contribute in any way. I certainly hope that I have not offended you with the expression of "my concern" .

Thanks so much,

Mike Hopkins

Blue rose

2011-07-22T04:43:00.001-07:00

Yesterday my most precious heartfelt friend sent me this. I didn't make time to read it yesterday but I did as I was having my quiet time this morning. I love God's timing because I needed this right now. I will let you read this and then I will share my thoughts (of course!).

Blue Rose
Having four visiting family members, my wife was very busy, so I offered to
Go to the store for her to get some needed items, which included light
Bulbs, paper towels, trash bags, detergent and Clorox. So off I went.

I scurried around the store, gathered up my goodies and headed for the
Checkout counter, only to be blocked in the narrow aisle by a young man who
Appeared to be about sixteen-years-old. I wasn't in a hurry, so I patiently
Waited for the boy to realize that I was there. This was when he waved his
Hands excitedly in the air and declared in a loud voice, "Mommy, I'm over
Here."

It was obvious now, he was mentally challenged and also startled as he
Turned and saw me standing so close to him, waiting to squeeze by. His eyes
Widened and surprise exploded on his face as I said, "Hey Buddy, what's your
Name?"

"My name is Denny and I'm shopping with my mother," he responded proudly.

"Wow," I said, "that's a cool name; I wish my name was Denny, but my name is
Steve."

"Steve, like Stevarino?" he asked. "Yes," I answered. "How old are you
Denny?"

"How old am I now, Mommy?" he asked his mother as she slowly came over from
The next aisle.

"You're fifteen-years-old Denny; now be a good boy and let the man pass by."

I acknowledged her and continued to talk to Denny for several more minutes
About summer, bicycles and school. I watched his brown eyes dance with
Excitement, because he was the center of someone's attention. He then
Abruptly turned and headed toward the toy section.

Denny's mom had a puzzled look on her face and thanked me for taking the
Time to talk with her son. She told me that most people wouldn't even look
At him, much less talk to him.

I told her that it was my pleasure and then I said something I have no idea
Where it came from, other than by the prompting of the Holy Spirit. I told
Her that there are plenty of red, yellow, and pink roses in God's Garden;
However, "Blue Roses" are very rare and should be appreciated for their
Beauty and distinctiveness. You see, Denny is a Blue Rose and if someone
Doesn't stop and smell that rose with their heart and touch that rose with
Their kindness, then they've missed a blessing from God.

She was silent for a second, then with a tear in her eye she asked, "Who are
You?"

Without thinking I said, "Oh, I'm probably just a dandelion, but I sure love
Living in God's garden."

She reached out, squeezed my hand and said, "God bless you!" and then I had
Tears in my eyes.

May I suggest, the next time you see a BLUE ROSE, don't turn your head and
Walk off. Take the time to smile and say Hello. Why? Because, by the grace
Of GOD, this mother or father could be you. This could be your child,
Grandchild, niece or nephew. What a difference a moment can mean to that
Person or their family.

From an old dandelion! Live simply. Love generously. Care deeply. Speak
Kindly. Leave the rest to God.

"People will forget what you said, People will forget what you did, but
People will never forget how you made them feel!"

We have been blessed with 3 beautiful blue roses, along with a glowing sunflower. I of course am a dandelion and feel so unworthy at times to be among such rare and strong flowers. I hope that next time you are in the presence of a blue flower you will allow God to speak to you through them. Most people would or have said, but your 3 blue roses cannot speak. I must beg to differ! Even though they do not communicate with words their lives speak volumes. I have learned more from their lives than I have from Billy Graham, Abraham Lincoln and the finest teachers Newton County had to offer way back when. I hold those people I mentioned in high regard but still I have indeed learned more from the blue roses God trusted in my care.

Jason Heyward & Dan Uggla

2011-06-21T17:51:00.001-07:00

> Jason Heyward asked if we wanted more pictures. Of course we did! I asked Mike to turn Michala's wheelchair around & Jason said oh no I will come over there. That might seem like a big deal to some people but to us it was huge. That was very nice & unselfish of him. Definitely not arrogant like some. Thanks to Jason & Dan!
>

Coach Dews

2011-06-21T17:48:00.001-07:00

>
>> Here is a picture it Coach Dews who is 72 years old with Marlee Anne. Really nice man!!!
>>
>>

Michala

2011-06-21T17:45:00.000-07:00

> This would be Michala eating a whole funnel cake by herself at the Braves game saying "what game?!".
>

Homer

2011-06-21T17:42:00.000-07:00

Jason Heyward

2011-06-21T17:39:00.000-07:00

> Marlee Anne is quite proud of this picture. Kinda like I am proud of my hug from him. This is a big guy. Marlee Anne said did you see his hands. He looks like a basketball player she said. Another very nice guy!
>

A night with the Braves

2011-06-21T05:02:00.000-07:00

I know another email in the same week. Wow! We are heading to Michala & Abe's neurology appts so I thought I would type this as we were going. We are praying for direction for their seizures. Michala is still having 2 really hard seizures a day. In reality that's really not bad & we know it could be worse. Abe is still having lots of them. They are changing or rather having some that are different looking. He has one med left to take and we were trying to hold off on it but now maybe it's time. Either way I am praying for peace.

Last night the Miracle League sent us to batting practice with the Braves. Even though it was 500 degrees on the field we had an awesome time. As we walked out on the field the outfielders came over and gave everyone baseballs. I just envisioned as soon as they gave Michala her's she would throw it back to them. We told her it was for her & she held it.

Ross who is the catcher came over & talked to us & signed baseballs & Marlee Anne's hat. Conrad came over & was very nice. Heyward came & man that dude is big. I will try to send a picture of hey & Marlee Anne so you can see how big his hand is on her shoulder. I went to shake his hand and he hugged me. Really nice guy too. He offered to take a picture with everyone & I said we would turn the wheelchairs around. He said no I will come around. Very thoughtful!

While Heyward was there with us Dan Uggla was talking to Mary Elizabeth. Everyone once in awhile someone makes a real connection with Mary Elizabeth and he definitely did. She was smiling & flirting with him. He took a long amount of time with her and even went back over a couple of other times to talk with her and ask to see her smile. I really hope the pictures turn out well of them. We did a group picture with Heyward & Dan & I have to say they quickly became favorites of mine.

Marlee Anne wanted to see Chipper. Well she got to see him but that was it. He was in his normal Chipper form and attitude. I think she quickly forgot him after Jason & Dan were so nice.

Our guide for the night was Steve and he was awesome! What an excellent host! After batting practice the Atlanta Journal Constitution did a video to go online of Homer giving us all souvenir tomahawks.

We ended up having excellent seats thanks to the Braves, Steve and our awesome usher! Everyone enjoyed their night!

I knew it would be a struggle for Abe in the heat so I found these neat ice packs. They are still soft when frozen. It fits really well in his stroller which is what we used last night. Not sure how it will do in his wheelchair but it should work nice. It stayed cold for 4 hours once it was behind him. It's made by igloo. We haven't gotten him a cooling vest yet so this worked well for now. Plus this was $4 as opposed to hundreds.

DC part 5

2011-06-21T05:01:00.000-07:00

Ok it didn't take me that many hours to write part 4. Some really bad weather & seizures to deal with.

What a wonderful day to rest! I am not sure how Mike made it through another day of conferences after the late night we had. After some of us (not me) had enough of being lazy we went to the pool to pass some time before dad got back.

That night when Mike got back we had supper & spent the beautiful evening walking around the wonderfully accessible National Harbor. Another stop by the Peeps store. On the way back to our room we discovered Godiva now makes milkshakes. Let me tell you the chocolate caramel one is delicious. I walked enough this week that it was ok if I had one. LOL!!!

Next morning Mike was up & out early again for his conference. We torn between the zoo, Alexandria, & the botanic garden. Everyone said the zoo out of those 3. We knew we would have a couple of hours when Mike got done with his conference. I was getting everyone ready when Mike walked in & the fire alarm went off. We get everyone in their wheelchairs trying to figure out how to get down the stairs with them. We called the front desk. No answer as I am sure all of them had headed outside. Thankfully the fire was taken care of with no one hurt. I had just fed Abe got up to get his clothes & before I could turn around Michala had pulled his gtube out. Balloon still completely blown up. I search for a syringe to deflate it & put it in. Forgot how much water & so thankful my friend Mary Jane was by the phone to answer & help me.

We get ready & as we walk outside the bottom falls out. We still head to the zoo but only to sit in DC traffic. Some how we made it & had time to most of it & definitely everything we wanted to see. As we are walking out of an exhibit I tell Mike the sky doesn't look good. We are at the very bottom of the zoo. My friend Maggie said the zoo is very hilly & boy was she right. Especially when you are pushing a wheelchair while running in down pouring rain.

We drive back through the DC traffic in the rain this time. It had cleared in National Harbor so we decided to try Grace's Mandarin for dinner. Very nice fancy restaurant with a beautiful view of the Potomac. We had just ordered & Michala flooded the beautiful marble floor with her daily episode. I get up & push her out. Our waiter was so kind & very concerned about Michala & me not getting my meal. She & I went left the restaurant just as it happened again. We get to the room, start the laundry yet again, finish a bath just as they walk in with my food. Perfect timing!

Friday morning Mike & Marlee Anne get up early to go get in line to see if they can get us tickets for the Washington monument. We had been trying to get them online but it was booked. They were 300th in line and were able to get 10 tickets. We were meeting my soul sista & her family that day & wanted them to get to come with us.

We ended up meeting Cyndi, her husband & their 2 daughters at Mount Vernon. As we are looking for a place to park my phone rings. It's Cyndi saying did you not even see us? I laugh & say no where are ya'll. She laughs & says we are the only black people around. We are all cracking up & Mike says we don't see color.

You would think it had only been a few days since we had seen each other. It's the most relaxing wonderful time with our families together. What blessings they are to us. Some of our most wonderful prayer warriors. We always giggle when we are together. This was no exception. At least we didn't know if the stares were for the wheelchairs or the 2 families together. Well ok one time we know what the stare meant. Nicki (black girl) was pushing Abe (white baby) & this older gentleman working there was too funny. His expression was priceless. At least Nicki was acting ok at the time & not being one of her aliases.

George & Martha's home was really lovely. The land was incredible. Their graves were very nice. The slave memorial was very beautiful the way it was set in the trees.

Again hills. Had it not been for Marcus taking over for me & Nicki taking over for Cyndi I do not think we would have made it back up the mountain. We were a hot mess!!! LOL!!! Quisha & Marlee Anne sat patiently at the top waiting on us.

Oh I forgot to mention that we were all taking picture of this tree that no one wants to claim said it was an apple. As I got closer I saw it was actually an orange. The gardens were absolutely beautiful along with the huge majestic trees.

We were not able to see it all in a day and would love to go back sometime to the museum. We decided to all have dinner together at the country buffet. It was so good to have some real food while enjoying the fellowship together. More giggles as Nicki brought her aliases out. Quisha was sitting quietly & we figured out she was enjoying her food.

They decide to start on their 3.5 hour drive home & skip the monument. As we walk out once again the bottom falls out. As we are driving we all see trees blown down over the fence into the street. Thankful that we were protected from whatever blew through.

We get to the Washington monument & find a HC parking place right beside it. We have 4 extra tickets so Marlee Anne, Michala, Abe & I go look got someone we can give them to. We see a family of 4 looking at their map and ask if they had been to the top. They tell us no that they weren't able to get tickets. We asked it they would like them & the mom starts crying. The dad tears up and said are you serious. We explain to them that our friends were not able to come with us. They were all so excited & could not thank us enough.

When it's our turn we go through security check & up the elevator. We go up 500 feet. When we step off the elevator & look out the window - WOW! That has to be one of the most amazing experiences in my life.

Out one window we watched as a plane landed. Has anyone flown into Ronald Reagan airport? I think it would be really cool! Out one window we saw Maryland & Virginia. We saw The White House, the Capital, pentagon & all the memorials. Oh and the mall with all the museums. On the way down in the elevator we get to see some of the walls as the windows open on the elevator. Very neat experience! So thankful that worked out.

Abe's seizures finally stopped after 2 doses of Ativan. It's still raining & storming. We have just 2 more hours to go & we will be home. Thanks for letting me share our trip with ya'll! Now my journaling is done for the scrapbook.

Love & respect to all!!!

Part 4

2011-06-21T05:00:00.002-07:00

Well we love Virginia but after sitting in traffic for 2 hours on 95 we are now thankfully on 85 about 8 hours from home.

After leaving the Capital we went back to Union Station for supper at America. It was really a neat place. Each state's shape was somewhere on the wall of the restaurant & taught me that I have several state shapes I cannot identify. A great project for Marlee Anne & I.

Those of you that know us know that we make the most of any trip we take, trying to pack in the most possible. We decided to go to the Vietnam memorial. I knew it was going to take lots of deep breaths and prayers to get me through this one. As we walked up to the statue nearby to take a picture I was once again flooded with the disrepect. Three young boys maybe high school or older came running up screaming. They stopped in front of me as I was about to snap a picture of the statue & said oh look there's some homies. A very nice lady came up and said just what I was feeling. She said it's very sad. There are nice signs placed about reminding us to be respectful & silent. Perhaps these boys couldn't read.

As we began our walk I heard my sweet child's voice say WOW look at how big that wall is. Then again saying look at all those names. Even as I type this now the tears flow. With every step I took my thankful heart grew. With every family member that touched the wall, was getting an etching of their loved one's name or a picture near their name I was grateful & prayerful.

Our first several steps afterwards no one said a word. Later as we continued towards the World War II memorial we discussed the sacrifice those had made for our freedom and how often we take that freedom for granted.

The World War II memorial was so large & really very beautiful. The gold stars reflecting in water along with the wreaths that were there were such a great remembrance. It was dark for our walk back down to the Lincoln memorial where we were parked. I enjoyed the quite peaceful walk just to reflect on my day, absorb & process it all. The kids loved all the lightening bugs we saw that we don't get to see at home.

It was such a quick drive back to National Harbor. Really beautiful to see the city lit up. It was back to the room to do laundry because of Michala's daily flooding of her wheelchair even through the double diapers. The joys of life & the reminders that God is always good!

I think we all welcomed rest time while Mike was working. We took our time & got ready for our big day at The White. We were told to park at Willard Hotel. Once parked it was a short walk before our adventure into The White House began. This is not something I ever thought I would have the privilege to do.

We got confirmation & instructions for our trip just a week before. First no strollers so we had to measure the double wheelchair. It wouldn't fit on the elevator at the White House so the secret service approved Abe's stroller. Because Mary Elizabeth was 18 she had to have an ID. Birth certificate would be ok. Oh no wait it had to be a picture ID. Thanks so some wonderful friends that was taken care of and hand delivered to our home the day before we left.

Standing on the grounds of The White House you knew great things had been done there. Great people had graced those halls. Whether you liked or agreed with the present or any of the past presidents should not be a focus at this time. To me I was incredibly honored to be allowed to walk those same halls. Sadly others made it obvious they were not as honored.

We were encouraged to ask the secret service any question we wanted. In the blue room Marlee Anne asked who was the first president to bring a Christmas tree into The White House. She first asked the secret service in the red room. She said she didn't know but she did know where they put it. She said they take the chandelier down in the blue room & it goes in the center. She said the secret service in that room could probably tell her. He couldn't answer but said if we would wait he would look it up. He pulled his phone out & began looking. We have been studying about the presidents in school but I wasn't sure exactly how much Marlee Anne remembered. The secret service said Andrew Jackson had a small sugar tree made but the first real tree was brought in by Benjamin Jackson. My sweet girl said thank you and walked on. Later she told us it was actually Franklin Pierce but she didn't want to tell us in front of the secret service. She had read that when studying about the presidents.

Quick stop at Chick-fil-a because we haven't seen one in 7 days. More soon.

DC part 3

2011-06-21T05:00:00.001-07:00

Part 2

2011-06-21T04:59:00.001-07:00

After a much needed pitstop we are back on the road.

I will say that we were pleased with the accessibility in National Harbor & DC. Parking was at a minimum in DC but that was for all parking. Our friend Pam had warned us ahead of time about the difficulties of parking. Thankfully that all worked out. Tons of walking but worth every step & again very accessible. Not all the places had automatic doors or HDA buttons which was surprising.

So after my overwhelming experience at the Lincoln memorial we walked down to the new Korean memorial. I think with each step my heart grew heavier for those who lost loved ones & thankfulness to those that fought for our freedom. My words will never be able to express the magnitude of emotions I felt on this trip.

More Disney friends were waiting on us at our hotel so we headed back. We had supper with them at Ketchup. It's a neat restaurant owned by Ashton Kutcher. I think everyone should try it once. We really enjoyed the French fry trio with the 5 different types of ketchup which included root beer, habinero & chipotle. Marlee Anne loved the asparagus.

The next day Mike was up bright & early for his conference. He left in plenty of time since he wasn't sure how long his commute would be. Good thing! Later that afternoon he came back & got us for our Capital tour. We parked at Union Station & walked over.

Those of you that don't know I am not big on history. Wasn't my favorite subject. I remember going to the Capital in Atlanta for school. I grew up in local politics but never loved it. Walking into the Capital was totally different for me than I expected. I was thinking all along that it would be neat & it is a beautiful & well kept building. However when I got inside it was more like an if these walls could talk experience. I felt the magnitude of the laws that were discussed & voted on there. I felt the presence of the great people that stood there, walk those halls & helped shape our nation. Very odd for me indeed. We had the most wonderful guide named Dave. Do ya'll know who Crawford Long's famous cousin was? Think on it & I will tell you soon. There is a statue of a great person from each state in one of the rooms in the Capital. Dr. Crawford Long's statue represents Georgia. Crawford Long hospital is where the surgeon that did Michala's amputation & helped save her life was from.

After our tour we got tickets for both the senate & the house. In the senate there was a congressman discussing the need for medicaid. I hope he saw our 3 on wheelchairs & realized that his speech was needed & not in vain. Michala brought enough attention to herself by clapping so she had to leave.

As we were leaving we took pictures of the beautiful Helen Keller statue. Her statue is the first statue of a child & a disabled person in the Capital. Very moving! Yes you know I was moved to tears.

Break for now because my phone is going dead. If you have made it this far I hope you are enjoying our trip so far.

Washington DC

2011-06-21T04:58:00.001-07:00

> Some of you may not be interested in our trip to our Nation's Capital. For those of you that are here it is. I didn't proof it so please overlook any mistakes or wrong facts.
>
> While we are still stuck in traffic on I-95 in Virginia, heading home from Washington DC, I thought I would send a trip report. I wish ya'll could feel what I felt (good & bad) and see what I saw this week. If you are reading this on Saturday please pray for safe travels & peaceful trip for all.
>
> Mike had a conference in DC and asked did we want to go. Worse case was we would have different walls to look at than we do at home so yes we would like to go. Mike wrote to our congressman about us getting tickets for The Capital & The White House. We were very excited about that. We were told to expect it to be extremely hot & humid. The week before we were there it was 105. Well I may leave some of it out but just know this trip was meant to be. God went before us as He always does & makes it perfect.
>
> We got there Saturday, checked in, and went to explore. We stayed in National Harbor which is a fairly new area about 5 miles from where Mike's conference was in DC. However he would quickly see those 5 miles took 45 minutes. So we loved the place where we stayed & the National Harbor area. We had supper at Cadillac Ranch (don't recommend it!). Next we headed straight for the Peeps store. WOW doesn't cover it. Afterwards I said ok we can go home now. Little did I know what lied ahead of us & so glad we didn't leave.
>
> We met up with some Disney friends. Their two girls & Marlee Anne played on The Awakening which is a sculpture of a giant struggling to free himself from the sand. You see a big head, hand, arm, knee & foot all sticking out of the sand. Very neat! That's also at National Harbor.
>
> Sunday was our day to explore Washington, DC before Mike's conference got going. We found the perfect parking place at one end of the mall in front of The Capital. Marlee Anne chose the Air & Space museum first. So much to explore. I loved the Wright brothers exhibit. Next was the Natural History museum which was very interesting. One thing we quickly noticed was the lack of care that was taken care of the museums. I am sure with admission being free it is hard to find funds for it to be taken care of. This is also when I first notice the lack of respect by a large part of the population. Respect for property and for others.
>
> It began to storm so we stayed to let the storm pass. We were all anxious to see the Lincoln memorial but we weren't sure about parking. Right in front was a parking spot with out names on it. As we walked towards the memorial I wasn't expecting to be filled with quite so much emotion. When we exited the elevator & saw the massive statue of honest Abe carved out of that Georgia marble my heart was filled with thanks. I had to stop and think what if God had not given us this great men to lay the foundation for our great nation. That's when the overwhelming part of my trip began.
>
> I will stop here so ya'll can take a break & I won't lose this email since I am typing on my phone.
>

What if...

2011-03-10T12:07:00.000-08:00

What if you woke up this morning and the only thing you had left was what you thanked God for last night?

Kelli
http://nomatterwhathappens-kelli.blogspot.com/

Appt update

2011-03-10T00:15:00.000-08:00

Well it didn't go the way we were expecting. Good news is Abe got a much needed larger gtube even though we couldn't get him an appt. Hopefully that will help cut down on the irritation & bleeding.

Bad news is Michala is so impacted that she is going to have to be admitted 2-3 days (praying for 24 hours) for an ng tube (I will have nightmares about that one for sure) & golytely. She has some bleeding but for now we will take care of this & then deal with that. She said we may have to end up with a gtube to be able to control this.

She did say for us to go ahead with our trip & we will admit her when we get back. Just one more thing! My attitude has stunk lately & this is definitely not helping. Gonna put it behind me & deal with it when we are back.

Update

2011-03-10T00:14:00.000-08:00

I feel like I haven't sent an email in quite sometime. We are heading to Egleston for Michala's GI appt & hopefully they will see Abe to. I just thought I would update while I had a chance.

Michala has never seen GI. We are hoping for a direction with her stomach issues. We couldn't get Abe in for an appt until the end of the month. I think his gtube is too small & is what is causing so much irritation. We are hoping she will check him & measure him for a new one.

Friday night Mike & I had a date. Our dear friends have been wanting to come over to play with our babies while we went out. They kept asking when they could come. Finally they gave us dates & said ya'll are going. We had a wonderful night out. When we got back home the house was full of laughter & smiles. They even asked when they could do it again. What a blessing to have friends that want to spend time with our children. It meant a great deal to us that they would give of their time for us.

Other than that not much is happening in our world. Just the daily fun stuff. Mike has a conference coming up next week so we will be heading to Orlando. We are very excited for some sunshine & to see our wonderful Disney friends.

We are almost there so I will cut this short. Hope everyone has a wonderful day!

Michala in Marlee Anne's desk chair

2011-02-27T18:24:00.001-08:00

I caught Michala in Marlee Anne's desk chair. She climbed up there all by herself. She was so proud & even looked me off when I told her to get down. Such a teenager attitude going on. Love it!!!

Kelli

http://nomatterwhathappens-kelli.blogspot.com/

Peter Pan

2011-02-21T20:51:00.000-08:00

I cannot seem to shut my mind off tonight. I am standing, well ok sitting vigil over Michala tonight. She has been having some very strange going ons for several hours. Right now she is sleeping beside me. We are praying it's a migraine & will be much better in the morning. So while I am sitting here with her I thought I would share our day. Sometimes in the midst of our seizure & medical filled days we are taken away & experience something that brings all of us joy together as a family. Today thanks to wonderful Camp Sunshine & amazing Peter Pan we did just that.

I have a feeling my words will not convey the amazement of this show. It's in the white tent beside World of Coke. If you have the opportunity to go in Atlanta or anywhere please do. You will not be sorry!

We were seated on the front row in the wheelchair section. Even for Mike & I those seats were really below the stage so don't sit on the front row! Marlee Anne has the opportunity to move to the second row during the second act & that was much better she said. However she did say that dad's lap worked really well too.

The screen is 360 & the view is spectacular. As the narration started I began to cry. I have always loved this story. Well when Peter Pan, Tink (oh my!) & the Darling children flew through the air I wish I could have taken pictures of my children's expressions on their faces. No words!

Ok all the cast was amazing. Tinkerbell had an attitude that was priceless. At one point Tink is hurt. Peter tells us all to whisper we believe in fairies. As I look around to see people whispering my eyes lock on this precious little girl. She is seriously into making Tink fly again. When Tink flies this little girl is amazed! This little girl could have very well fought cancer or is fighting it now but at that moment that didn't matter because in her sweet little mind she just single handily gave Tinkerbell the power to fly. Priceless!!! Then when Peter Pan & Captain Hook were right beside her fighting she was in awe one minute & laughing the next.

No way Camp Sunshine or Peter Pan the show could have known that it would impact so many lives on those few hours today. Maybe they hope they would. Well they succeeded. At least with our family I know they did.

So again if you have the chance to go see it please do.

Afterwards we had big plans to go to the Cheesecake Factory. However some of our Camp Sunshine friends wanted us to go eat at Baha Fresh with them. It was a great way to end the day spending time with them. So wonderful to see everyone!!!

Ok if you made it this far & it's still Monday please say a special prayer for Michala. Well even if it's Tuesday but hopefully by then all will be well.

3 years ago

2011-02-16T00:30:00.000-08:00

3 years ago the nurse had just come to get Abe to give him a bath so we could go home that morning. Within minutes I heard them call a code blue. I knew right away it was Abe. I waited a few minutes & no one came. I walked down to the nursery & was told to go back to my room. In a little while the doctor came to tell me Egleston was on the way to get him but she didn't think he would make there.

When Mike got to the hospital we took the walk into the nursery to say our good-byes. Very similar to the journey with Mary Elizabeth years before. Once again family & friends came to journey with us.

I would have much rather taken him home & played house. However looking back I know had that not happen in the nursery he wouldn't be with us today.

Those 5 weeks in the NiCU were so hard. However I know the dear friendship that was renewed in Marvel Anne, the new friendship made with Nancy, Kim, sweet little Bridget, our dear Terri's, our forever friend Rebekah who spoiled him & of course our ever faithful Mo. Can't forget the NICU knitters that taught me how to knit. None of that would have happened. Even though I hated the suffering I am thankful for what came from it.

As I hold him now helplessly as he struggles with seizures I am thankful God had other plans. Not the seizures of course but his life. I have learned so much in the 3 difficult years of his life. So thankful to be reminded that this is only a blink of an eye.

I have had trouble today just being able to breathe. I so hope that this is behind me & there are better days ahead. For some reason I wasn't prepared for this to hit me so hard this year.

From Abe's daddy

2011-02-14T07:51:00.000-08:00

If I ever question God's plan for my life I have just been reminded that He knew all along what He was doing by bringing this man into my life. Mike wrote this letter for Abe & I asked him if I could share it. Many of you don't get to see what an incredible man he truly is. I am blessed that God created such an incredible person that along with juggling the stresses of our family's medical needs, his job that provides all our needs, my wonderful (ha) female self & he still has the patience & love to share with us. He could have easily walked away. Blessed beyond measure in so many ways! The other day when I came home crying from a shopping trip to help find a gift for Abe & he said I understand - he truly does!

Happy Birthday Abe,

One thousand and ninety five days longer than I expected. Yes I remember it well, sometimes too well. The day you came into this world and the horror that followed. The mere thought of having to give you back right after you came was heartbreaking. Can't say that I blame you, if I saw what you were getting into, well I might have asked to be recalled if I had a choice. After Marlee Anne was born I thought your Mom and I had gotten it right. Turned out to be just more pain and suffering for an innocent child. You see Abe, Marlee Anne was not suppose to be the only one who would gain a playmate. Now mind you, I have never been partial to a child's gender. I would have been just as happy and proud to have raised four girls, but even so I had hopes and dreams of what the two of us could have done. The world would have not been able to contain us. Sadly I get to stand by and watch you suffer through another difficult day. I wish I could fix you and make things right. However, I am just a simple man, incapable of healing you, but forever able to love you. Your recent smiles and giggles have been such blessings and I believe that better things are to come. I can't help it Abe I am just that way. I believe in the glass half full. I just know that God has a purpose for everything, not just for your life or my life, but in everything. Abe I look forward to the days ahead. There will be challenges and difficult times for sure, but we can make it. Even in the valley of the shadow of death the Lord will be with us. You see Abe I know how the story ends. There will be an eternity of time for the realization of all of our hopes and dreams, but just not here on this Earth…… just not here.

Happy Birthday My Son!

I love you,
Dad

Happy Birthday Abe

2011-02-14T05:44:00.000-08:00

Three years ago I was at the hospital waiting to be induced to have our precious baby boy. I think Marlee Anne was the most excited of us all. She had dreamed of this day & all they would do together right along with us. She always said for his 3rd birthday she was going to take him to Toys R Us & let him pick out whichever ride-on toy he would like. Instead she struggles just like us to find something besides diapers or an outfit that will work for him. Mike said everywhere he & Marlee Anne turned this weekend there was a 3 year old little boy running around. While we are rejoicing that Abe is 3 we continue to grieve the little boy we lost.

We are so thankful to have friends & family that understand how very hard this is. His birthday party is not about the gifts but about celebrating the gift of his life.

Even though I struggle & don't understand it I am thankful. My prayer today is that satan would flea so that I can fully receive the blessings God has in store for me. Also that the water works would stop before Marlee Anne sees them. I don't want her memory of her mom to be she cried all the time.

We would like to thank ya'll for being there for us & praying us through the first 3 years of this rollercoaster ride. We would like to thank God for carrying us through and showing us what matters most in life.

Kelli

http://nomatterwhathappens-kelli.blogspot.com/

Happy New Year

2011-01-05T07:55:00.000-08:00

>
> Well let's see the Christmas cards never went out, I didn't get my traditional Christmas ham for the first year ever, & I am just now telling ya'll Happy New Year. Still life went on & God is still good!
>
> Christmas Day we were blessed to have Michala's Aicardi sister come & stay with us until this past Monday while her parents & 9 year old sister went on a cruise. We miss her greatly. Ok maybe not my back.
>
> Mike is busy as always being the best husband in the world & number 1 daddy while juggling work & still going to college.
>
> Mary Elizabeth seemed to be doing so much better until yesterday when she started getting real cold. Trying to keep her warm is so challenging lately. She is struggling with her eating & drinking again. I cannot believe she is almost 18 & we have to apply for guardianship for her.
>
> Michala finally got her ipad. What a patient little girl. The jewelry & craft orders I got around Christmas helped along with her birthday money. She really likes it too. I thought I didn't want one until I saw her's but they are really cool.
>
> Marlee Anne is doing good. She is studying hard & had no problem doing school through the holidays even though the other kids were out of school.
>
> Abe has been struggling with his screaming. Maybe he was trying to tell us this lovely weather was coming.
>
> I am taking it slow to get my back better. Have lots of things on my to do list but for now those will wait. I have really been enjoying making my jewelry.
>
> I do hope that everyone has a healthy & happy 2011!
>
> Always thankful!!!
>

Thankful!

2010-12-21T18:23:00.000-08:00

Tonight when we are supposed to be at one of our traditional Christmas parties I am reminded to be thankful. Even though I miss being out as a family celebrating I am thankful to be home.

Friday when I sat Mary Elizabeth up to give her her morning meds she gasped for air. I suctioned her & gave her a breathing treatment before giving her her meds. She struggled taking her meds & wouldn't drink. I put her in the van & headed for the peditricians office.

Once there they came running in the room working with her & called the ambulance. The EMT saw her & said we would have to go across the street to Rockdale until she was stable enough to take to Egleston. When he picked her up it must have dislodged something because she was breathing much easier. He put her on 8 liters of oxygen just to get her sats at a good level. He said we would head to Egleston but if she got in distress again we would have to go to the nearest hospital.

I was shocked on the way to Egleston at how many people didn't pull over to let us pass. The EMT driving said they deal with that all the time. So my request is next time you see any emergency vehicle with their lights & siren on please pull over & let them pass.

Once we got to Egleston & they started working on Mary Elizabeth the EMT told me he was very scared when he walked in Dr. Patonay's office & saw her. I was the most scared I have been in quite awhile.

After her xray we found out she had double pneumonia. She was put on Cpap 8 liters at 100%. She was admitted to the ICU.

Thankful for the prayers! The medical team was all laid out start to finish. From Dr. Patonay & her amazing staff, the awesome nurse that stuck her once & only once for the most beautiful IV you have ever seen, to the doctors & nurses that released her from ICU. They kicked us out because the hospital was so full of really bad stuff & they didn't want her to get something else. We were also at a point we could do all they were doing except the IV meds. Once again our sweet girl reminded me of what a mighty God we serve. He used her in a mighty way at the hospital witnessing to many.

So you see while my heart wishes for more my spirit is renewed & thankful for the true spirit of Christmas that fills our home tonight. Mary Elizabeth is still on oxygen, taking extra meds, breathing treatments & suctioning but we are home together. A family unit as Marlee Anne says.

We cannot thank everyone enough for stepping in & filling the void while she was in the hospital. From taking care of the kids & Mike, bringing me Starbucks since the coffee shop was closed, bringing my hospital bag that I ran out & forgot, doing my last minute shopping for me & just volunteering truly for whatever! Thanks so very much for the support & most of all the prayers! Please continue the prayers for healing for Mary Elizabeth's lungs. She is still a very sick little girl. Please pray for protection so that everyone else stays well.

Our Christmas cards have not gone out, things we usually do have not been done, but you know what, the most incredible time of year will still happen on Saturday morning. We will wake up in a warm home together & sing happy birthday to Jesus. Merry CHRISTmas ya'll!!!

With love & a thankful heart!

Kelli
http://nomatterwhathappens-kelli.blogspot.com/

2010-12-03T22:03:00.001-08:00

For a great cause

2010-12-03T19:21:00.000-08:00

My friend made wonderful necklace, bracelet & earring sets & donated them to help the Magana family adopt Liliana. The set is $20 & would make a lovely Christmas gift. You can order from the website below. Thanks!

The Magana family is adopting a beautiful special needs child named Liliana from China and as many of you know, international adoption is very expensive. I donated 100 snowflake glass tile necklaces to the Magana family to help with adoption fees. 100% of the purchase price goes toward bringing Liliana home this January! You can purchase a snowflake necklace as well as a matching bracelet and earring set that my sister donated on Liliana's blog. http://www.snowflakesoflove.blogspot.com/ I really want these to sell well for the Magana family! Thanks so much for looking!

Appt update

2010-10-14T11:20:00.001-07:00

First thanks so very much for the prayers! Nice to read emails on the way to the doctor to keep my mind busy when Mike is on work calls.

Well he decrease Michala's VNS cycle. She is still having 2 seizures a day. Some are pretty violent & they last any where from 2-20 minutes. Once again we accept they fact that she is going to have them. It's about quality of life. She had gained 6 lbs in 3 months & Dr. Flamini was very pleased with that. It's that cheeseburger diet he put her on.

Ok so for our little complex buddy. He did not adjust his VNS because he didn't want to throw something else in the mix. He wants him to have a CAT scan to make sure there is nothing there putting pressure on his brain. We are going to try melatonin & then clonodine. In other words who knows?! At least we have options to try.

Our big excitement came when the fire alarm went off & Dr. Flamini about fell out of his chair. We had to be escorted down the elevator by security. We still don't know what happen. We were only told that it wasn't a drill.

I am tired & I know this email comes across as negative. I don't mean to be! I am thankful to have a doctor who cares about our children & mine & Mike's well being as well.

Thanks again for all the prayers!!!

Kelli
http://nomatterwhathappens-kelli.blogspot.com/

Michala & Abe's appt

2010-10-14T05:04:00.000-07:00

Michala & Abe have appts today with the neurologist. Would ya'll please pray for a safe trip? Also would you please pray that the doctor has some answers, suggestions or directions for Abe's non-stop crying. I am honestly not ready to accept that it's neurological & there is nothing we can do for his screaming literally from sundown to sun up. I feel very helpless & it hurts my heart! It is wearing on my nerves & it's exhausting.

Abe's appt at Shriners

2010-10-04T13:41:00.000-07:00

Well we are heading home from Shriners in Greenville. Everything went well. They said we could try the AFOs to see if they keep his clubfeet from turning back in. We will also keep a close check on his scoliosis to make sure it doesn't curve too much or too fast. Thanks so much for the prayers for safe travels & a good appt!

Camp Sunshine - WOW!!!

2010-10-03T12:06:00.001-07:00

WOW!!! Even that word does not begin to cover this weekend! WOW! Just WOW!!!

We checked in at Camp Twin Lakes around 6:45 Friday night. We had time to get settled in our cabin before meeting everyone in the gym. I had gotten in touch with several of our friends that might be there this weekend. All of them said no. Not one single one of the families we were going to know. It nice to have to comfort of familiar faces but I have to tell you I was excited to get to meet new families.

We walked in the gym & immediately Marlee Anne saw friends she had met at sibling camp this summer. Right away we met a very sweet family from Griffin who Marlee Anne had been at sibling camp with the sibling Rylee. Then we met our camp doctor for the weekend. Well actually we met her daughter Shay age 3 who volunteered to help with the girls & Abe for the weekend. Just precious!!!

Mike met Jacob & after we met back up he was telling me all about him. Well Jacob was someone I had to meet. As I was doing meds this mom came up & said I have never seen so many meds & Jacob has a lot. I immediately bonded with his mom Heidi & got to meet Jacob. They love Disney as much as up or if possible more. She & her husband were married at Disney. Remember that's my dream. Well ok not marry but renew our vows on our 25th anniversary next year.

So we had our snack time which consisted of pasta salad, wraps, chip & way more than what a snack should have been. That's when it hit me I bet my long time friend MaryAnne's husband, who is the new chef at Camp Twin Lakes, must be there. So I headed back to meet him. Sure enough he was there. I have to admit he has changed the definition of camp food. He is absolutely the sweetest thing ever too. I wouldn't expect anything different for MaryAnne though.

Justin, who I found out this weekend is Jon's brother, played & sang for us. I was really doing ok until he sang Love Is. It made me think of Jon & remember Tyler Musslewhite. Then all of a sudden I looked up & remembered sitting at that same table the last time we were at camp with Tyler Copley. Wonderful memories that tugged deeply at my heart.

Marlee Anne was playing twister with a friend, Mike & the double chair headed back to the room while Mary Elizabeth & I finished up. As I was sitting there someone put their hand on my shoulder. It was our friend Holly who volunteers. It had been 4 years since we had seen her. I was so excited to see her & cried & cried.

We head to the cabin & as we are walking there we see the most incredible night sky ever. WOW!!! The sky is actually filled with millions & millions of stars. For those of you that don't get to see those that often because of the town or city lights, they are there. I promise!!! Twinkling away to let us know that those that I have gone on before us & that mighty God of ours is still in control. How awesome to know that he placed each one in just the perfect spot.

As I was getting everyone ready for bed Mike & Marlee Anne walked out to the sports field (huge open field) to look at all the stars & the constellations. I loved hearing Marlee Anne's excitement & even Mike's when they got back to the room.

The next morning we were up & moving about at 6:30 really feeling quite refreshed. How did that happen? For some reason our children sleep at camp. Even Abe for the first time in about a week slept without screaming all night. WOW!!! See there's that word again!!! It was a true WOW!!!

Mike & Marlee Anne dropped us off at the dining hall while they went fishing. I was in the middle of doing their meds when Marlee Anne came back to tell me she caught a fish. She & Mike, along with our wonderful friend Molly who is a volunteer, were very excited!!!

After our wonderful breakfast all the families introduced themselves. It's so nice to hear about the families, the diagnosis, & where they are in treatment. It's good to put the faces & names together. We made family flags afterwards. Those were hung in the dining hall when we got finished. It was good to walk around to see them & learn more about the families.

Michala had been quite fussy all morning so we took her back to the cabin while Marlee Anne was in her age group session. As soon as Mike took her out of her chair she laid down & went to sleep. OK so nap time for her. I left Abe there with them too while Mary Elizabeth & I headed to get Marlee Anne from her session.

We went to snack time which is a treat for me because they have bananas which we try not to keep at the house since Michala is allergic to them. I grab a banana & peanut butter & put it under Mary Elizabeth's wheelchair to eat when we got to the rock climbing wall. Well I just finally ate that banana & peanut butter that Mary Elizabeth kept in her basket & brought home for me. I completely forgot about that.

Marlee Anne had signed up for the rock climbing wall with some of her friends. She made if a few steps up, looked at me & said I am ready to come down. I told her she had not even made it halfway & to please try a little harder. She made it past halfway & said she wanted to come down. I encouraged her to make it all the way up so she could ring the bell & tell dad about it. Then it hit me I could record it. I said what if I record it & put it on youtube. She loved that idea. She made it all the way, did an awesome job & rang the bell. That definitely deserves a WOW!!! I will share the link to the video once I get it on there. Just keep your volume turned down so you don't hear that southern drawl of mine. LOL!!!

It was time for lunch so Michala was awake & they met us there. For some reason I have always signed up for the first time slot for a massage. It's great but pushes me at lunch time. I had made a wonderful salad & asked them to save it because I couldn't finish it & really wanted to enjoy it after my massage. They were also having the camp store open during my massage. OH MY I couldn't miss that cause it's another one of my WOWs for the weekend.

I sat down in the lounge to wait for my turn. They said one of the massage therapist were late so I said I would be glad to wait for them so the other 3 parents could go ahead. Oh yes I meant to say this is something that the massage therapist volunteer their time to come out & do for the parents during family camp. You got it! WOW!!!!

As I was waiting this cool, calm & collected mom came walking in. She propped her leg up & right behind her walked in one of the camp doctors. She proceeded to tell him how she got the fish hook in her leg. WHAT?! Yes her son had laid a fish hook on her towel without her knowing it. When she picked up her towel the hook went into her leg. Now it had to be cut & pushed through her leg. She was sitting there so calmly & I was about to freak. I thought I am being no help. They needed something to cut it so I thought of the wire cutters in crafts. I ran down & got them. The doctor got them all sterilized & the MOM, yes the MOM cut the hook. WOW!!!

Dale, a dad from Barbados. We had a family from Barbados with us because there daughter is here in Georgia being treated for her cancer. His daughter wanted to go paddle boating at 2:30 when his massage was scheduled so I swapped with him. Worked out perfect for me because I got to finish my salad & go to the camp store. Camp store first of course. I have 2 awesome sweatshirts that I have had for a long time. They don't make them anymore but just this weekend they had 2 in the store. YAY!!! Another WOW moment indeed.

OK if ya'll are getting tired of my WOW moment ya'll better stop reading cause there are more ahead.

I got everyone settled in crafts before heading over for my massage. WOW!!! WOW!!! WOW!!! My massage was with my lovely new friend Keyli. It was her first time for a massage & it was nice to hear how she felt right afterwards. Later she wasn't feeling well but after we talked about it I realized that she had not drank enough water. She drank more water & began to feel better.

Marlee Anne had gone with some of her friends & one of the UGA volunteers to play tennis, putt-putt & gold pan. There were about 6 or 7 volunteers from UGA there for the weekend. It was really nice to meet them & they added lots of fun & help to the weekend. One of them even taught me to make a bracelet while Michele from Camp Sunshine took Mary Elizabeth for a walk in the beautiful sunshine. Their emails at Camp Sunshine are @mycampsunshine so I always say my Michele, my Tenise & my Ann when I am referring to them. We do think of them as ours.

After Mike got back from changing Michala & Abe's diapers we all went for a walk. We ended up at the tree house where Justin was doing drumming. OH WAIT!!! I left out a huge WOW moment. Holly was sitting with Mary Elizabeth while Justin was playing & singing after lunch. Mary Elizabeth began to smile so Holly turned her around so she could see Justin. She fell in LOVE!!! So needless to say we had to take her to listen to Justin drum. As soon as we walked in Justin asked if we wanted drums. Michala of course did. Let me tell you this was a WOW moment cause the drum was the perfect height for Michala to play while sitting in her chair.

OK I am getting ahead of myself. The tree house is built on a hill & I think it has to be my biggest WOW moment of the weekend. OK maybe not but it was HUGE!!! Words cannot describe this place & the pictures don't do it justice. This is mine & Mike's dream for Chimney Park. If I had the money I would do it now. As we walked up it began to take my breath away. When we walked through the doors off the big porch while pushing the wheelchairs in with ease I could not breathe or speak. Mike wants to take Connie, David, Barbee, Cheryl, & Scott on a field trip there. I want LaTrelle to see it too. It has a solar window & green roof that you can see once you climb the spiral staircase. There is a slide to slide down from the porch. Under the tree house is a tire swing & a porch swing. To get back up there is a rope walkway or steps.

When we left we took the nature trail. Along the nature trail there are several benches to stop & rest along the way or just sit to enjoy the nature. There are always some fun aspects hidden along the way. Bird houses are all along the way.

When we got back we met up with Holly & we all went to cooking. They were finishing up so we got to enjoy a cookie. It was time for Mike's massage & the rest of us went to the gym for Wacky Olympics. They did some really fun events.

Time for supper. Do ya'll see a pattern here? I even left off a snack time that we missed some where in there. Seriously you will never go hungry at camp. The definitely keep us busy & pack it all in. Supper was wonderful chicken fajitas & salad. However I didn't get my salad because Mike & Holly told me it was time for Mr. Tone. We had 30 minutes but I guess they thought I had had enough to eat.

Mr. Tone is a magical clown. He is a definite WOW!!! He chose Marlee Anne to assist him in one of his magic tricks. Her expression on her face was priceless. She can't wait to show Uncle Bryant. I wonder how surprise she will be when it doesn't work without Mr. Tone.

Afterwards we all put warm clothes on & went to the campfire, roasted marshmallows for s'mores & sang songs with Justin. Wonderful way to end the night. End the night? It was only 9:00 or so those giggly girls thought. Back to the dining hall for games. They chose Life. OH MY WORD!!! Longest game ever. They said no Monopoly was longer. I was so tired. After we did everyone's meds Mike took his two back to the cabin while Mary Elizabeth & I patiently waited for the girls to finish their very long game. It was fun hearing them laugh, cut up & be little girls. At that moment whether they were a cancer patient or the sibling of one, they were right then just a little girl. WOW!!!

Once again on the way back to our cabin we oohed & aahed over God's awesome creation in the sky. WOW!!!

Another wonderful night in our cabin & we were up & ready to go. Not to leave but to go see our friends once last time. There was a family I had been wanting to talk to all weekend & because of our different activities our paths didn't cross until this morning. Toinia came over to sit with me. She & her husband David have 10 children & all weekend I really admired the dynamics of their large family. Just beautiful! We hit it off quite quickly. I so enjoyed talking with her. They home school and I just loved the spirit she had about her. They live in Dublin so we won't get to see them often but we will keep in touch.

I also really enjoyed getting to know Deanna's family. Deanna was a friend of Marlee Anne's from sibling camp. They live near Hartwell.

It was time for us to say our goodbyes & as I walked in late with another family the wonderful slide show was already going. Jane was our photographer for the weekend & she capture some real WOW moments in some WOW pictures.

To close the volunteers gave everyone a bracelet. We were supposed to give it to someone in our family & tell them why. Before they even handed them out I began to cry. What an awesome thing! How often do we go through life everyday & not tell the ones closest to us how much they mean to us & why. Marlee Anne gave me her bracelet for encouraging her to climb the rock wall. Mike added in a thank you for getting us to come.

Without a doubt we are all refreshed & revived. Ready to face the world & find more WOW moments in our life. We are so thankful to the new, no doubt lasting friendships we have made. The volunteers have touched our lives in ways they will never know. We can't thank them enough! Camp Sunshine staff continues to be a huge part of our lives. Thanks so much Michele & Ann for taking time to make this weekend so special. Camp Twin Lakes, Chef Jeffery & your staff - thank you!!!

Thanks to our dear friends for taking care of the house, bunnies & mail while we were gone. When I checked the mail there was a donation acknowledgement from Camp Sunshine. A precious long time couple in our lives that mean the world to us made a donation in Michala's honor to Camp Sunshine. Thank you so much for remembering childhood cancer month, our precious angel & an amazing organization that brings sunshine to many who otherwise it would be gone forever. What an awesome close to the weekend!

If you made it this far thanks for letting us share this special WOW moments with you!!!

Kelli

http://nomatterwhathappens-kelli.blogspot.com/

Counting my blessings!

2010-09-28T08:23:00.001-07:00

What a beautiful morning to be counting my blessings! An email update is overdue so I thought I would share.

Last week was my birthday & it was AMAZING!!! I have to admit when my sister told Mike before we got married that I was spoiled it really has paid off. I continue to be spoiled by my husband & my children.

I guess it depends on what think of as spoiled. No not with jewels or lots of material things but things that I love. Naps, long hot baths, massage, hugs, kisses & lots of love! We get busy & forget the important things in life. So many times we are crossing paths, blowing kissing, giving quick pecks, saying I love you but not stopping to really enjoy those special moments. WELL this past week was nothing like that as far as rushing. We all took a step back & kinda regrouped. Always a good thing to do.

My birthday was filled with all the things I love. Well except a cake from Baby Cakes because they were closed. This was actually a good thing because thanks to Mike's wonderful discovery of Nuriche I have lost 13 lbs of the 20 I gained when Abe was in the cast. WOOHOO!!! Better than that I feel GREAT!!! No sugar or starch cravings even though there are petit fors from Baby Cakes sitting in our kitchen from the shower last night.

OK so Mike did cook me a delicious meal that I thoroughly enjoyed! I got a nap thanks to Marlee Anne & her excellent care of her sisters & brother. Snuggles from Mary Elizabeth & Abe with some special smiles thrown in there. Michala played ball with me, danced for me as they sang happy birthday & enjoyed the cake they got me.

The next night my BFF from high school took me to RLs to celebrate. OH WOW!!! I have never been there before. Cannot believe I waited this long to go. It was delicious! Love having a wonderful place locally to go to. I am still craving the grit cakes. Anyone know how to make them? I guess I should google it. Then we walked across the street to Square Perk. It's a new coffee shop in town that's really neat. We sat & dreamed of being an extra in Footloose. They were filming across the street. I just knew if Dennis Quaid walked in I would make a scene. Thankfully he didn't walk in. We had such a wonderful night. It hit me that night that we have been friends for 30 years. Can't beat a true friendship like that!

Thursday we left for Hilton Head thanks to some special friends of ours. We got there & Sandy's parents met us in the parking lot. They helped us get upstairs & get settled. Michala loves going there because she has her own bed. It's really perfect for her. She snuggles in & actually sleeps well when there is not a full moon, which Thursday was. It was beautiful seeing it while driving there though.

The next morning I was on the beach by 7:30. Talk about paradise! This is not the ideal trip for our family because we are not able to get everyone out on the beach & really no one in my family enjoys the beach except Mary Elizabeth. I sat on the beach taking in all the sun I could. My vitamin D level should be up a little now I hope. Closing my eyes & listening to the waves come in & cleanse my soul was so therapeutic for me. It's so peaceful & always so amazing to me that God created this for me. The hugeness of the ocean. It's so mighty & God has control over that. What an awesome reminder that He no doubt has control over me & mine. WOW!!!

We had wonderful seafood Friday & Saturday night. I read a whole book while on the beach! That's huge for me because I don't know the last time I completed a book. Mike & Marlee Anne played putt-putt both nights with stops by Starbucks to pick up a coffee treat for me.

Marlee Anne enjoyed the one on one time with us since everyone couldn't go out to the beach. There were a few times when she mentioned she wished it was different. Saturday when we had been there less than 48 hours she told me she had had enough of the beach. She asked if she had to go out with me the next morning. That girl!!! She is definitely her daddy's girl.

Mike even got some studying in while we were gone. He is so dedicated!I have to take a minute to brag on him. He is so very selfless. He had no problem at all staying in so I could enjoy time on the beach. Most of the time he remembered to feed everyone too. LOL!!! He even gave up playing golf to spend time with Marlee Anne. He took her to a shell beach our friend Jennifer told us about.

Sunday when I got back in from the beach I packed while Mike & Marlee Anne enjoyed some ocean time with the boogie boards. When we left we drove over to Disney's Hilton Head Resort. WOW!!! WOW!!! When anyone has points to get rid of PLEASE contact us!!! It was so nice!!!

When we got off the elevator on the first floor Shadow, a beautiful red headed retriever was lying in front of his Mickey dog house. His owner Blu was playing the fiddle. Does anyone know the difference in a fiddle & a violin? Blu was very nice. Shadow was pouting because Blu had not taken him for a walk.

We enjoyed exploring the resort. Mike & Marlee Anne enjoyed one of the hammocks spread out around the property under the huge shade trees.

When we finished we headed over to Sea Pines, our future home!!! WOW!!! It is incredible. We ate at Land's End Tavern that Sandy had told us about. If you are ever there make sure to stop by to enjoy their all you can eat crab legs & shrimp for $19.95. Let's just say we got our money's worth.

We got in all the rain on the way home but made it safe & sound ready to face the world once again.

Yesterday Marlee Anne & I hosted a shower for Sandy's son Nathan's bride-to-be. It was fun planning it & we really enjoyed having everyone here. Thanks to my wonderful mother-in-law everything was clean because she cleaned while we were gone to the beach.

So you see my week was overflowing with blessings. I received so many birthday wishes & was blessed beyond measure. Thanks to everyone for being part of my blessings!

Now go count your blessings!!!

Kelli

http://nomatterwhathappens-kelli.blogspot.com/

Childhood Cancer Awareness

2010-09-17T09:39:00.001-07:00

OK this is straight from my heart. Very honest! Through the tears & all, with typos I am sure!

WOW! I cannot believe it has taken me 17 days to get this email written & sent out. Have you ever thought that you have dealt with demons or struggles, whatever you choose to call them, in your life only to realize you really haven't. So many times I go through the motions of the day, of our life filled with blessings & some how block out those past struggles or as I call the "C" one a demon.

September is Childhood Cancer Awareness. Honestly how many gold ribbons have you seen this month? Next month when it's breast cancer awareness you will see thousands of pink ribbons. Chances are you will see one everyday during that month. Why do you not see as many gold? Well probably because I have taken this long to come to grips & write this email. I should have sent ya'll an email each day reminding ya'll about it. How many of you did not even know that September is Childhood Cancer Awareness? How many of you didn't even know there was such a thing? How many of you have someone in your family that has been diagnosed with childhood cancer? If you haven't it's my prayer you never do.

You see once a child has cancer it doesn't go away. It's not a cold that you can get over. It's a demon. It's something that lies inside that child FOREVER. Even after becoming adults childhood cancer survivors are affected by the side effects from the chemotherapy, the radiation, the amputation. They live with it FOREVER. It doesn't go away.

We are one of the lucky ones. I can tell you where I was standing in Boston Children's Hospital almost 12 years ago when I heard Mike ask the doctor after Michala's 4 hour surgery to remove that nasty tumor if it was cancer. CANCER? Where did that word come from? It had never crossed my mind. The doctor said it was nasty & he was sending it to 4 pathologist around the world. Well the denial began for me right then. I would not even think cancer.

I remember the spot I sat in the middle of the floor in our old house, holding the phone, listening to those words, as Mike & my mom walked in. I could barely speak the word cancer.

I remember where I was in the Aflac Cancer Center at Egleston Children's Hospital when Dr. Olson said it was stage 4 angiosarcoma. I remember that feeling. I can still feel that feeling. I saw his mouth move but never heard a word of it.

I remember sitting in the waiting room at Crawford Long, numb, scared & longing for this nightmare to be over. I remember hearing Dr. Munson say it's her life or her leg.

I remember carrying our little Michala to the operating room door. Giving her to the nurse. Turning her life over to Dr. Munson to amputate her leg. I remember standing in the hallway as they wheeled her past us to her room. I remember pulling back the covers to see my baby's leg gone. I remember that first night & every night for the months that followed closing my eyes & seeing Jesus with an ax chopping her leg off. How could my God, that God that I grew up knowing & loving, the one who said He loves me, do something like that to my precious baby girl. That's when I forgot how to pray! That's when I very dear precious lady in my life told me it was ok to be angry at God & even tell Him so. She said He already knows your thoughts & feelings so talk to Him about them. Boy did I.

I remember when Gene & Sandy came in Michala's room that night. I couldn't move from where I was sitting. My legs wouldn't hold the weight of my heart up. I remember making sure her leg was covered. I didn't want anyone to see my baby without her leg. I remember our first outing together after "it" happened. We went to Brooke & Stewart's Christmas party with our very close friends. I remember dressing her up so pretty and crying as I tucked in the extra part of her tights. I remember gasping when her blanket slid off & you could see her leg was gone. I remember Don so sweetly sitting beside her & putting her blanket back on her as if he knew my heart.

I remember it getting very close to Christmas & walking into our home you would never have known. Mike really wanted to put up a tree. Maybe to help my spirits. I remember having so much anger that I wanted nothing to do with Christ birth in our home. I didn't want a living tree in my home representing a living Christ. Mike put up the tree. I remember sitting on the couch holding Michala as Mike & Kim decorated the tree. I wanted no part of it. To say I was bitter was a complete understatement.

I remember taking Michala to Aflac after the new year for her first chemo treatment. I remember getting settled in our room & putting her beautiful gown on her that Aunt Paige had given her. The nurse said that's going to get really messed up. I wanted her to look pretty though. It lasted maybe 30 minutes into the treatment before it was indeed ruined. We had been told this was the sickest sick we would ever see. I thought oh but we have been through so much with Mary Elizabeth. NOPE nothing could compare to this sick! I remember watching as the nurse hung the first bag of chemo. I watched as that poison that was supposed to help heal my child went into her body. I looked at the nurse and through my tears asked when her hair would start falling out.

I remember putting gloves on to change my baby's diaper because those meds were so toxic. What were we allowing to go in our baby's body? What was happening here? I remember looking over at Mike as he sat reading his bible. How could he do that? Remember I had already forgotten how to pray must less read the bible. So now I am mad at him too because his faith was strong enough to see him through this.

When Mary Elizabeth was born the social worker told us the divorce rate among parents of special needs children. Again we heard our chances of our marriage surviving two special needs children when Michala was born had just doubled. When Michala was diagnosed with cancer our chances more than tripled. All I can say is that through this struggle my wonderful husband stood strong in his faith. God blessed me with an awesome Christian mother years ago because He knew my future (Jeremiah 29:11). He truly knew the plans for my life. He blessed us with some of the most amazing friends & family that never left our side through all that. I can now proudly say we have a strong marriage anchored by an awesome God.

I can continue with my rememberances but I have rambled on quite enough. I said all this to say if I had a wish it would be that another parent, grandparent, sibling or friend would never ever have to hear those dreaded words that a child has cancer. The only way this is going to happen is to have support in finding a cure. Here is my lowly plea for help with that. I cannot sit back & just say my child is a cancer survivor when my dear friend just lost her little boy because a cure wasn't found soon enough. Each time Michala coughs or we see an unusual spot on her I think is this it? Is it back? I want a cure for Michala and for all the other children. If you are able to give please do. Give in honor of Michala, in honor of your child that has been blessed not to be stricken with this horrible demon, give in memory of that child that is no longer with us.

http://www.curechildhoodcancer.org/ CURE Childhood Cancer is dedicated to discovering cures for childhood cancer through cutting edge research and providing education and support to patients and their families.

http://www.mycampsunshine.com/ Camp Sunshine has blessed our family more than words can say! They taught me how to smile again and reminded me that we could make it through this.

Thank you for anything you can possibly give! Please remember to pray for the families that will receive the news today that their child has cancer. It will be like two classrooms full that will hear that today. Please pray for the families that are in the middle of their battle. Some have been battling for years. Please remember the survivors & their families. Please pray for those who have lost their children to this awful disease.

With a thankful heart that is still in the healing process for so much!

Kelli

http://nomatterwhathappens-kelli.blogspot.com/

What a week!

2010-08-30T18:44:00.000-07:00

WOW what a week this has been. Just realized I haven't updated. This is being sent from my charter email address & I hope I have it all straightened out now.

We still haven't heard from Abe's sleep study. Hopefully they got enough info. He slept for an hour then the seizures started. During that hour they had to put him on oxygen. I think a lot of it was positional. I guess I should have paid attention to it being a full moon. Got him settled back down & he slept for another hour. He was back awake having more seizures so they decided to disconnect him & send us home. It was 3:00 AM so I went through McDonald's drive thru for a cup of coffee. I dislike driving, especially at night on little sleep. We made it home safely though.

Let's see the rest of the week was fairly uneventful thankfully. Friday my dear friend came into town & I met her for lunch. What a blessing! I enjoyed that so much! I know it sounds crazy but it was really nice to have some girl time.

Saturday I went to the Horizons of Hope event http://www.horizonofhope.com/ which is an ACS & Kimberley Chance Atkins http://www.kimatkins.net/ fundraiser. I was asked to donated some items for their auction. I was so honored to be included in this great cause. It was hosted by Longaberger consultants. They did a wonderful job!

Sunday when I was loving on Mary Elizabeth she felt very cold. It's a weird cold that's kinda hard to describe. When I took her temperature it was 91. I started with the warming process & she got up to 93. She was having some respiratory issues so we decided it was best to go ahead & take her to Egleston. I love when things fall into place. Once there we had an amazing team of doctors, nurses & techs taking care of her. They took us right back & began working with her. They sent in the transport team to start her IV because they knew she was a hard stick. She was in the bed looking at me when "he" walked in. "He" said hey beautiful girl. Well she immediately rolled over toward him & smiled that beautiful smile. I knew right then she was going to be ok. Each time something like this happens I start thinking is this it. Is this the one that will take her life. Is this when her mito disease will progress. So that turning point at the hospital meant a lot to me. She continued to flirt with him & is now on restriction. LOL!!! He got all the IV stuff together & looked for a good vein. I told him to please let me know how I could help him. He said please pray. OH MY!!! OK Mary Elizabeth you can flirt with him. He got it on the first stick but because they had to get so much blood it blew. He apologized & was able to get the IV started on the next stick. The doctor said her labs were perfect & her xray of her lungs was clear. The doctor said he thought it was an upper respiratory virus & we could go home unless I felt better with her staying. He said he was concerned with her picking up something in the hospital. So we went home! Her temperture is staying between 95-96. As long as we can keep it up I think we can push through this. Thanks to everyone for the prayers!

remembering my brother Tommy

2010-08-30T18:36:00.001-07:00

I think I may share these stories each year with ya'll but I can't resist remembering my precious brother. Sunday was his angel day & I didn't get to send this since we were at the hospital.

I have so many wonderful memories of him. I want to share a couple with ya'll. When I was little, well actually maybe 8 I still wanted to sleep with my daddy. My mom would have no part of that so Tommy would set his clock, wake me up before mom got up so she didn't know I slept in the bed with them. Tommy would even let me sleep in his twin bed with him. I remember him turning on his side & holding me so I wouldn't fall out of the bed.

When Michala was diagnosed with cancer Tommy really wanted to do something to help us financially. His dream was to have a Harley Davidson motorcycle. He had just gotten it right before Michala was diagnosed. The last time I saw Tommy was at Michala's celebration of life ceremony. That week he died. After he passed away mom told me that Tommy wanted to sale his Harley & give us the money to help with our bills. To this day I still cry about that. Tell me that's not true sacrificing love.

Thanks for letting me share a couple of memories of my wonderful brother Tommy who I miss each & every day. For those that don't know that's where Abe's, Thomas came from in his name. Tommy & my daddy. I am sure they would both be proud to have such a sweet little boy named after them.

Kelli

http://nomatterwhathappens-kelli.blogspot.com/

24 years ago today!

2010-08-16T06:09:00.001-07:00

Ok warning this could get sappy so delete now if you don't want to suffer
through it.

24 years ago today I married a man I thought I loved. Over the past 24
years he has taught me true unconditional love that goes far beyond a
feeling. He is now my best friend, my rock, the true love of my life.
I could not have walked this journey with anyone but him. If I ever
begin to question God knowing what He is doing all I have to do is
remember He brought us together.

You know when my daddy walked me down the aisle that day never did I
dream what lied ahead. I remember Mike & I laughing & smiling so much
during the ceremony. Those smiles & that laughter have gotten us
through so much.

Mr. Bill Pratt told us to never go to bed mad at each other & to
always hold hands when we pray. Those words of wisdom still hold true
today for us.

We don't give extravagant gifts or take fancy trips. Our marriage
stands strong through all the challenges & trials that have been
thrown our way. Our life may not be what others look at as the perfect
marriage but I cannot imagine it any better.

I have to share a daily occurrence of the sacrifices he makes for me.
Yesterday he had promised he would let me take a nap. Naps in my life
are an extravagant gift. The gift of time cannot be replaced or
bought. Well Korky called & asked Mike to go play golf. Mike didn't
hesitate to say he had promised me a nap today. I told him to go ahead
& go play. He said no today is for you. Then he went & got lunch for
us at Henderson.

I realize to most people that doesn't mean much but to me that's a
sign of true love. He sacrificed something he truly loves & time he
truly cherishes with his friend to do something for me.

If you were there 24 years ago & you are still with us thank you for
walking this journey with us. If you joined us along the way thank you
for celebrating this life with us.I only thought I knew what love was 24

years ago. Now I know!

I have attached a picture from 24 years ago to make ya'll smile. With us

are the most wonderful flower girl & ring bearer, Julie Howell & Raife Baker.

Love & much thankfulness!

Kelli
http://nomatterwhathappens-kelli.blogspot.com/

WHAT A WONDERFUL DAY!

2010-08-09T20:34:00.000-07:00

YES that would be me yelling! We got to the orthopedic surgeons office & he started cutting Abe's cast off. GROSS!!! As soon as it was off Abe roll on his side & smiled the biggest smile. I got to pick up my baby & carry him to xray. Yucky & all what a glorious moment. I thought I would be sick because I was terribly nervous about how the xray would look. I think you could hear us all sigh a huge relief when the xrays went up on the wall. What a wonderful day!!! God is so good! So thankful he carried us through this!

All I want to do was scrub Abe down. As if he knew my thoughts Dr. Meehan said now don't scrub this. He said in a few days all that dead skin would fall off. He said if we rubbed it would be like a sunburn. So thankful he told me that!

Abe loved soaking in the tub but not as much as stretching out. He didn't love any of that as much as I have loved snuggling & cuddling him.

We cannot thank ya'll enough for all the prayers to get us through this journey. I can honestly say I am so thankful it's behind us!

As a side note my email address has changed. It is now mommie2angels@charter.net . Thanks so much!

Don't forget to go vote Tuesday! Have a wonderful week!

Love & thanks!

Kelli

our life

2010-07-29T08:31:00.000-07:00

I have put off giving an update until I could have a positive attitude in writing it. This is not it!!! I wish this email was filled with positive things but sadly I am having a tough time not letting the bad stuff over shadow the good. This journey has been among the toughest we have faced. Abe screams pretty much non-stop except for the brief moments when he smiles.

His seizures are really bad but the neurologist has decided to wait until his cast comes off to see how much of it is caused from his discomfort. When we walked in the neurologist pulling Abe in the wagon & the doctor & nurses all go oh no a spica cast we knew they felt our pain. When he screams & has seizures there is no holding him & comforting him. It's not easy to hold him & brings him little comfort.

The stress level in our home is at it's highest point that it has been in a long time. Even Michala is not able to get her usual 2 hours because Abe keeps her up. It's very sad!

We went to his ortho appt. I was expecting him to say come back next week & we will get the cast off. Instead after taking the xray his bones are still side by side. They are not even lined up to heal. He said to come back in 3 weeks. Three more weeks of this. The surgeon said he loves surgery & loves helping children but he hates spica cast. He said they are a pain to put on, a pain for the children & a even bigger pain for the parents. Oh good words of encouragement there!

As you can see the spica cast & I are having some real issues as of late. I HATE the thing!!! It's nasty beyond words.

Michala's neuro appt went good. We increased her lamictal to see if we could help cut down on the 2 hard seizures she is having each day. He also put her on a diet of a McDonald's hamburger each day along with boost. Her meds along with the chemo meds from the past have definitely made her weight a struggle.

Mary Elizabeth is being patient with me. Accepting my love when there is time. Smiling her sweet smile to remind me that this is only for a brief time even though it feels like and eternity.

Marlee Anne is probably having the hardest time of all. She wants so badly to help Abe. Her tender heart hurts for him too.

Mike has been up most every night, worked the next day & still come home patient with me. He understands my exhaustion & does all he can to help.

So in a nutshell life is not good right now. It's a complete struggle. We try our best to take in the brief moments of peace & goodness to get us through this. Your prayers are much needed & appreciated!!! Thank you!!!

PS. too tired to proof it!!!

update with videos

2010-07-16T11:28:00.000-07:00

For the past several days I have been meaning to update but couldn't bring myself to because the news to share hasn't been good. We are struggling to get through this part of our journey. We are so ready for Abe's leg to be healed & for him to be out of this horrible cast. So instead of sharing all the details with you I will share this video of Abe that I took yesterday. It speaks volumes & does my heart good!

Check out this video on YouTube:

http://www.youtube.com/watch?v=GlJmJG5sdLM&feature=youtube_gdata

Also Marlee Anne has a new commercial with our wonderful friend Andy Irwin. She had a blast once again. I think she did a great job! It will air on Taste of Newton on our local channel around the first part of August.

YouTube. http://www.youtube.com/watch?v=U3KhgbPvzwA

Thanks for letting me share!

Abe update

2010-06-30T11:48:00.001-07:00

Well here we are not quite 24 hours into the body cast thing & I am actually sitting down to send an email. I realize that we will have ups & downs & last night was quite the down. Right now is peaceful & our little green alien (per Marlee Anne's request) is resting for a minute.

This is not a new experience I signed up for but here I am right in the middle of it. NO ONE could have prepared me for what took place over the past hours. This cast is heavy & huge for my sweet little boy.

OK so the tone of my email will now change I think. I started it earlier & now 3 hours later I am trying to finish it. I am thinking all the stuff I was going to put in there wasn't meant to be shared. Let's just say this is a challenge to say the least. I won't bore you with the past 3 hours worth of activities.

We are home & would greatly appreciate your continued prayers as we get used to the cast, moving him, changing him, controlling his pain & seizures. Thanks so much!!!

Love,

Kelli

Prayers for Abe please

2010-06-28T17:20:00.001-07:00

This weekend Abe's splint started slipping. Yesterday when we called they told us to come in the ortho office today to have it re-done. When we got there Dr. Meehan said he would have to have a body cast.

So tomorrow Abe will be going back into the OR under general anesthesia for a spica cast. It will go up to his chest, all the way down his left leg & halfway down his right leg. There will be a hole for his gtube & one for his diaper.

Our biggest concern is his respiratory issues while in the cast. Of course anytime he is put under general anesthesia it's a concern also for the risk & his glucose staying stable.

We are not sure how long we will be in the hospital. It depends on how he does in the OR & how quickly I pick up learning how to take care of him in the cast.

Please keep Abe in your prayers & all of us could use some prayers as we start this new journey. While it's not wanted & I have struggled greatly with it I truly believe God has something in store for me to learn or something in it for our family to grow closer to Him.

Thanks so much for your continued prayers & support.

Love,

Kelli

quick update

2010-06-23T23:52:00.000-07:00

Today, well yesterday was a very long day! Abe is trying to move more. Good thing but bad because it causes him pain before he realizes it. His leg above his splint is quite swollen but his foot seems fine.

Someone asked about the skeletal survey. It was all clear except for this fracture & a previous one near his ankle we didn't know about.

Please continue to pray for healing for Abe's leg & my heart. I am trying hard to forgive myself. Thanks so very much for all the love, support & prayers. Today is a new day! I am ready for God's blessing to flow & the healing to continue!

Love,

Kelli

stick families

2010-06-23T23:47:00.000-07:00

These are some of my most favorite ones to make because they are all different. Of course they don't have to have the Georgia G either. So much fun!

vinyl flip flops

2010-06-23T23:46:00.002-07:00

Trying to keep my mind busy so I thought I would share some of the new car window vinyls I have been doing. All these are flips flops. My neice told me about the GA ones & since making those I have gotten orders for all kinds.

vinyl flip flops

2010-06-23T23:46:00.001-07:00

my babies' daddy

2010-06-20T09:04:00.001-07:00

Our local paper featured emails today from people honoring their father's for Father's Day. I am not sure how they chose which ones would be included but for some reason the one about Mike was not included. When I found out I began to cry. First off I HATE this day! I miss my daddy & even though I think Mike should be honored because he is an incredible father I would just soon skip it. I was very disappointed that the email about Mike was not included in the paper.

Mike said Kelli it's ok. He said do not make a big deal out of it. He should be recognized. Not so he will win a prize but so that people will know what an incredible father he is. The email doesn't even cover it all. He sacrifices so much for his children and me every single day. He does more quietly for our community and for people and families than people will ever know. He is very humble and will not be pleased that I sent this out but it's something that needs to be told.

So here it is. I hope that it will give you some insight on the type of father Mike truly is. Thanks so much for letting me share this!

One would think that this would be something easy for a child to write or at least say for someone to write for them. However that is not the case for three of Mike Hopkins' four children. For seventeen years Mike Hopkins has been the voice for his special needs daughter Mary Elizabeth, that has no voice. She is not able to speak with words. Mike tells everyone he has a chance to that Mary Elizabeth speaks volumes with her love, life and the infectious laugh and smile she has.

On Mary Elizabeth's first day of life she stole her daddy's heart. On her third day of life as he drove to Egleston to be with her he never left her side unless the doctor's made him. That is how it has been for the past seventeen years. He has sacrificed more than one person should be asked to sacrifice. He has given up dream upon dream just for her. Never complaining or being sad about it.

Each time he tried to finish his degree something happened. One time he was registered and all ready to go back to college. That was the time that Mike's second daughter Michala was diagnosed with stage four cancer. She was given a grim future and he didn't want to miss a minute of time with her. He put off college once again. He was there for each grueling chemotherapy, each test and the amputation of her leg. All done in hopes of saving her life.

He finished his degree no long after his third daughter Marlee Anne was born and was able to attend his graduation with her sisters. Mike rejoiced as Marlee Anne began doing things his other two daughters could not. Never did he forgot to praise the other two for each of their accomplishments. Some how he was able to juggle it all. He let all three of his daughters know just how special each of them are, take time up with each and continue working to support his family.

Mike was also blessed with a son. A son he named Abraham. He had big plans with Abe. Teaching him to throw strikes, teaching him how to hit a golf ball and most of all teaching him how to be a Godly man who cares for others. Soon after Abe's birth Mike was once again headed to Egleston Children's Hospital for a five week stay. While Abe is not able to do all the things Mike dreamed of teaching him, Abe has learned from the best about being a Godly man.

It is an honor and blessing to watch this man with his children that he loves so dearly. Even when he cannot fix their hurts and pains he continues to stand up for them, be their voice and carry them through this journey. I know without a doubt each of his children would say thank you daddy for loving us. Thank you daddy for taking care of us. Thank you daddy for showing us the love of God.

PLEASE vote!

2010-06-18T02:58:00.001-07:00

http://www.mypigeonforge.com/savingvacations/Story/Page1

If ya'll have time would you please vote for Brian & Gina Musslewhite. She is a sweet friend of mine. Their son is battling terminal cancer. There is a treatment that is available but they are not able to afford it. If they are able to win this they could get him that treatment. Please take a minute to vote to help save their son's life. You can vote once a day. Please pass it on also. Thank you!!!

Here is Tyler's caringbridge site in case you would like to keep up with what is going on with him. Please keep this family in your prayers.

What a DAY!!!

2010-05-27T07:46:00.000-07:00

WHEW!!! Last night we got home at 8:00 from Abe's pulmonologist appt. On the way up there I remembered I didn't send out an email saying we were going & asking for prayer. I have to say this was an appt I was anxious about. I was hoping for answers, a little concerned about what those answers might be, & kinda hoping we wouldn't get answers.

Well first off I have to say that I never thought I would meet a pulmonologist that I liked better than Dr. Teague. He was Mary Elizabeth's pulmonologist for almost 15 years & I loved him.

Dr. Schoen, Abe's GI specialist recommended Dr. Kim to us. We all really liked her. She admitted she knew very little about mitochondrial diseases which is how Abe is still being treated until a more definite diagnosed is reached. I wasn't surprised that she said that but knew right away we had found a good doctor because didn't act like she knew about it.

She was surprised that Abe had not had a sleep study done yet. That is on the list to be scheduled. She also wants to do a bronchoscope to see just how floppy his airway is. She will also do a Bronchoalveolar lavage where she will put fluid in his lungs & then remove part of it to see if he has any type infection in the lining of his lungs. Since he is considered high risk she will not put him to sleep just for those two procedures. She will wait until he is having something else done. She is checking with GI to see if there is something they want done.

She was very detailed & went through lots of options. Lots we hope we don't get to. She sent us to the hospital for x-rays & lab work. She was concerned about his CO2 being elevated the last time but is hoping it was due to stress.

It was very long at the hospital but all went well. Once again I am so very thankful to have such a wonderful children's hospital near by with excellent staff.

While we were waiting to register my friend Gina walked through. She had her husband Brian are there with their son Tyler that I told ya'll about the other day. He had just had a CT scan because they thought his cancer may have spread to his brain. We are praising God that it has not. It was one of his medication making him talk out of his head. Please continue to remember Tyler. Some extra prayers for his mom Gina would be great too. She was so very tired. It's such a long hard road she is walking.

We stopped by the cafeteria to get us something to eat around 5:30 because we knew we would be sitting in traffic. Neither of us had eaten anything except a pack of crackers (hospital life once again it seemed) so the cafeteria sounded good. As we were walking out we ran into our friend Shannon. Hers & Mike's son Sam was there to be weaned off the ventilator. OH MY WORD!!! That boy is so very precious. Remember he is Abe's NICU buddy. Well he was in this bouncy exersaucer in his room. He looked at me & smiled & my heart melted. His daddy made him give me his mean look. I clapped & he clapped. Mike (his daddy) told me to pick him up so he could give me a hug, Vent tubes, pulse ox cords & all, here we go. As soon as I had him in my arms & asked for a hug he put those precious little arms around my neck & hugged me so tight. The tears flow again as I type this. So many thoughts and so many emotions. That little boy is a fighter & has come such a very long way.

Shannon walked us out to the van so she could get Sam's ball for him. As we drove off I said to Mike isn't he precious. He said yes & could you imagine if Abe could do that. He said Marlee Anne would be so excited. Those are things she wishes for he brother every single day. Just yesterday she said mom when Abe is able to sit up I am going to teach him how to...... I don't remember what she said because I was still lost in when he is able to sit up. So thankful but at times my mommie heart longs for more.

So now we start down a new path on this journey. Hurry up & wait I am sure. We would appreciate your prayers greatly. Please keep Ricky's family & friends in your prayers today too as they have his celebration of life service.

little Ricky got his wings

2010-05-24T08:57:00.001-07:00

Our sweet little friend Ricky has won the ultimate prize. He is in the arms of Jesus & no longer in pain. Typing that sounds good but my heart hurts especially for his sweet mama Shelli. I haven't told Marlee Anne yet. My heart is not ready for that yet. This cancer journey that God allowed us to venture into was not one I would have chosen. However the closeness we feel with the other families is one that we never would have experienced. The joys we celebrate with each other are truly amazing. The sadness & loss in unspeakable. We have lost many dear friends during this journey. Each one of them have taught me so very much. Their lives were not in vain. They each truly had a purpose. Just like little Ricky did in his short years on this earth. He is truly our Superman. Please keep Ricky's family & friends in your prayers!

playing catch up

2010-05-20T14:44:00.000-07:00

Here I am once again behind in my journaling & I really want to catch up. So much has happened that I haven't shared. I don't know where I left off last. Oh yes with Disney & I didn't even finish sending pictures. I will do that soon!

Last week was spent finishing up Sweet Feet for Brody's March for Babies t-shirts. My sweet friend Kathy who is Brody's Aunt asked me to design & make their team shirts for the March of Dimes walk. Well I had a blast. I loved it so much. It was so much fun to spend that extra time with Kathy too. I have missed her this week. They did an amazing job raising money for March of Dimes in memory of Brody too,

Friday Marlee Anne & I got to go to the Presbyterian Church Preschool Cystic Fibrosis Walk. It was so much fun seeing the little children march and yell Cure Found. It was in honor for our friend Torianna & the sister of a little boy that is in Mackenzie's preschool class.

On Saturday all six of us went to GA Tech for the GA Great Strides walk for Cystic Fibrosis. It was really a neat experience. I was touch at how the common bond & cause made people rally together & seem like close friends. I met some very nice families. Several of our neighbors participated so it was fun to walk with them & get to know them better.

Marlee Anne & Mary Elizabeth really enjoyed it but Michala was the funniest. There were all kinds of dogs there. All shapes & sizes so she was in heaven. There was a little bitty Jack Russell that thought he could take on anybody. He sounded like he could. Then there was a huge mastiff that was the perfect height for Michala. There was Benny the little Pekinese that was way to hyper for Michala. We all fell in love with the English bulldog named Hero.

On the way home Mike & Marlee Anne went in the Rockdale Extension office for the bug show. Marlee Anne ate a chocolate covered cricket & became a member of the "I ate a bug" club. Mike & Marlee Anne both did the bug spitting contest.

I feel like there have been more activities I am leaving out. I will think of them & share them later.

We have been weaning Abe from his vigabatrin. He has been having an increase in seizures but not bad enough to stop the weaning process. The withdrawals he is having from coming off the drug however is horrible. That's bad enough to put him back on but if we don't push through we will never get him off. I can honestly say this has been one of those really hard times in my life. The kind that is wearing on my patience. I am trying to stop & pray each time I have such a hard time with it or rather when he is having such a hard time with it. Prayers would be greatly appreciated!

On a good note he has been a few days without oxygen. Occasionally he will drop. We are still scheduled for pulmonology next week. He is also much more active since the wean. Smiling at appropriate times not just when he is having a smiling seizure. He is getting very vocal too. Trying to focus on the blessings of getting off this med instead of the challenges.

Michala's seizures are increasing & we are not really sure why. Could possibly still have a lot to do with hormones.

Mary Elizabeth is doing well & we are so very thankful for that. Marlee Anne is counting the days until her next commercial shoot. No not really but she really did enjoy that. She has been very busy helping in the garden.

While I am asking for prayers could you please add our little friend Ricky. He is in his final days of his cancer. His family has brought him home to celebrate his life & enjoy these last days. Please pray for his family. This is one strong little boy that has taught me much in his short life. He is a dear friend of Marlee Anne's. While it is hard for her to let him go she knows without a doubt that God has him & he will no longer be in pain when he gets to heaven.

One last prayer please. Our friend Tyler recently decided not to endure anymore cancer treatment has a tumor on his back. It is pressing & hurting him very bad. He has agreed to radiation to help shrink it to give him some relief. Today he had two radiation treatments. The first was very painful & I haven't heard about the second one yet. He also has pancreatis & cannot eat. He is very hungry but his pancreatis is getting worse. His blood count was low so he had to have a blood transfusion today. Please pray that makes him feel better.

Sorry to throw so many prayer request your way but these two boys have been heavy on my heart along with their mommy's too. Thanks for joining us in prayer!

This email was typed in bits & pieces in between the screams so please overlook all the typos that I am sure are there.

quote

2010-05-17T09:17:00.000-07:00

Friday I found a quote by Og Mandino. I was very moved by it so I looked him up & read more about him. I hope to get his book soon & read it. There are so many quotes of his I want to share but this is the one I chose for today. I hope you have a blessed day!

"Build this day on a foundation of pleasant thoughts. Never fret at any imperfections that you fear may impede your progress. Remind yourself, as often as necessary, that you are a creature of God and have the power to achieve any dream by lifting up your thoughts. You can fly when you decide that you can. Never consider yourself defeated again. Let the vision in your heart be in your life's blueprint. Smile!" -- Og Mandino, Inspirational Author

Marlee Anne's commercial

2010-05-13T09:20:00.001-07:00

http://www.youtube.com/watch?v=yeR3NjX3r3g Marlee Anne's commercial with Andy Irwin for savewaternewton.com. Current Events Productions did a great job as usual! Thanks ya'll

With a humble heart!

2010-05-11T18:29:00.000-07:00

I know that my Mike wanted me to share that article. It's not that I do not want our story shared. I do! I want to know that my children's lives are not in vain. I want others to know what true blessings each of them are.

When they walked in our home to do the article on me my first question was why me. I could give them a list a mile long of mothers that are wonderful in my eyes.

As I tried to convey through the article I am a mother doing what any mother & other mothers do every day. Our challenges & activities are just a little different. I am not saying it's not tough some days. It is. But show me a mother that can't say they have tough days.

I am thankful for my husband that thinks I am a wonderful mom. It is my prayer that my children think that. It's my prayer daily that they know without a doubt that I love them.

Thanks to all of you that I have commented and shared the article with others. I am humbled that I was chosen by God to be the mother of four of His most amazing creations. I am honored to give Him all the glory!

Love,

Kelli

- A Mother's Day story of unconditional Love

2010-05-11T17:49:00.000-07:00

- A Mother's Day story of unconditional Love

Day 2 - last ones

2010-05-05T15:26:00.001-07:00

I hate to bombard ya'll with so many pictures. I will send more tomorrow. Hope ya'll enjoy them!

Day 2-1

2010-05-05T15:23:00.001-07:00

Day 2

2010-05-05T15:20:00.000-07:00

Day 1 - 2

2010-05-05T15:18:00.000-07:00

Day 1 pics

2010-05-05T15:14:00.000-07:00

Disney last day

2010-05-05T14:57:00.000-07:00

Marlee Anne wanted to go to Animal Kingdom today. As soon as we walked outside we knew it was going to be HOT. It's nice how God always says ok it's time to go home. It's too hot, too cold or too rainy for ya'll to be here. This is definitely what he said this day.

We got to Studios to see Aunt Nay & we got to see John too! Always a treat. We didn't stay & headed right over to Animal Kingdom.

We went straight back to the safari. We had a wonderful guide. Sitting right behind us was a lovely family from Ft. Walton Beach. There son had Cerebral Palsy. Their daughter was a little younger than Marlee Anne. The mom was asking how Marlee Anne does with her sibling. The mom said she had some concerns about her daughter resenting her brother someday. I told her it's a concern of mine. I told her that we keep that line of communications open so that Marlee Anne can share any feelings with us at anytime so we hopefully don't run into that.

After the safari we told Marlee Anne she could choose one more thing. It was already 89 degrees & getting hotter by the minute. They were struggling with the heat. She chose to see Mickey since we hadn't seen him that trip. As we were walking up to see him we spotted Thumper. She was so cute! I hope she is a girl. Marlee Anne was excited to tell Thumper that she has a bunny named after her. She explained it was Flower but she changed it's name to Thumper. Thumper was very excited!!!

As we were waiting in line the CM made the announcement that since it's so hot the characters had to take a 5 minute break every so often to cool off. It was Mickey's 5 minute break. When we got up there to see Mickey there was a wonderful CM there named Bill. We had met him on a previous trip. He was very disappointed that we waited in line. He was going to get a manager to get us a guest assistance card. We told him we had one. He said well please use it & do not make your children wait in this heat.

We got to see Mickey & the photopass photographer was wonderful. She seconded Bill about not waiting. Bill asked Mickey to please pick 4 pins from his lanyard to give to each one of the children. Mickey was as excited as the children were. So was Bill. As we were leaving Bill went over, hugged Mike & told him bless you. All of that took less than 5 minutes but it made a huge difference in our lives.

We left the park & headed to Studios to pick up goodies & say our goodbyes to Aunt Nay & John. It's hard leaving them! We had a great drive back home. Got in & got settled to start the week.

Hope you enjoyed our trip.I will share pictures soon. I took over 600 so I will be sure to pick & choose.

Disney Day 3

2010-05-05T14:37:00.001-07:00

OK ya'll I left out a really important part of yesterday. While Mike ran to the room to drop some stuff off we went up to the food court. Well low & behold there was a big beautiful cupcake. Yes I took a picture of it! I sat down & offered Marlee Anne a bite but she didn't want it. I proceeded to enjoy the most wonderful cupcake I have ever had in my life. It was the most delicious yellow cake with caramel oozing out of the inside & the most delicious caramel icing on top. Almost as good as Miss Indie Crawford's & Miss Mildred Pratt's homemade caramel icing. Mike walked up & asked was it worth. He meant sugar & calorie wise. I immediately said oh yes! He got one too. The CM walked over & said that didn't last long. Talking about mine. Then he looked & Mike was done with his. He couldn't believe it. Ya'll take my word for it or better yet plan a trip to The Contermporary to get one. YUM!!!

OK so it's Saturday morning & I am wondering how this day will be anywhere near as wonderful as yesterday. We head over to Studios after Mike checks to see if they have the cupcakes out yet. Sadly they're not! OK we don't typical laugh at people but this could not be helped! While waiting at the gate for Aunt Nay we love to people watch. We guess where they are from & what the are celebrating, who wants to be here & who doesn't & so on. Well as we are people watching that morning there is a family of 4. Mom, Dad, & 2 daughters. Nicely dressed, nice looking family. Well all of a sudden dad breaks out in morning calisthenics. Right there in the middle of all the people coming in. The oldest daughter bust out laughing & we do too. However soon we realize he is not joking he is very serious about this. He is warming up like he is about to run a marathon. I guess to some a day at Disney can be considered that. He is stretching all kinds of ways. He holds on to his daughter's shoulder as he does his hamstring stretches. It is really too much to take watching him & Mike commentating. The mom is kinda looking around like no my husband is not doing this right here. Daughters are still laughing. People are walking way around them. Well Mike says I hope De comes so he can help them. De used to do character warm-ups so he would be a great help. Well comin around the corner with Aunt Nay is De. By the time they get to us Mike & I are laughing so hard. It was a wonderful start to our day. It was awesome to see De too.

Marlee Anne had already decided she wanted to do the Backlot Tour that morning. It had been several years since we had been on it & she didn't remember it. It was a lot of fun & we all really enjoyed it. That was all we did there & we headed back to the room. I was going to stay with everyone in the room while Mike & Marlee Anne did some of the stuff at the Flower & Garden Show at Epcot. They sent me pictures throughout the day so I could see all the neat stuff they were doing.

The night before Abe had a terrible accident so the sheets & comforter had to be changed. When Mousekeeping came she was amazing! Her name was Linda & we quickly got to know each other. She shared about her children & how she got to Disney. She was a very sweet lady & I really enjoyed our time together. I picked up all the trash & did all I could to help out because she wouldn't let me change the sheets. She took time with each of the children. They enjoyed that special attention.

After she left I got everyone fed. We ordered room service which was such a treat. It was really good too. Everyone was settled for a nap I thought. HA! Michala had other plans & did not want to sleep. In a little while there was a knock at the door. I knew it was too early for them to be back from the park. When I opened the door there was Linda holding 4 precious Disney stuffed animals. She had tears in her eyes as she handed them to me & said one for each of your precious children. Disney magic I tell you. Yes I cried!

When Mike & Marlee Anne got back she & I went out to the pool. Sitting in the chair watching her got me quite emotional. As I watched her I thought it shouldn't be this way with me out here & Mike inside with the other 3. My 17 year old Mary Elizabeth should be lying beside me in the lounge chair while the other are out swimming together. Every now & then I do long for things to be different for them.

After awhile it was time to get ready to go back to the park. I wanted to go to Epcot to take some pictures. Marlee Anne wanted to show me the neat Eco playground they had there. It was too cool! We loved it! As we walked around The World Showcase I took pictures of all the luminaries. Marlee Anne wanted to do the Bee Scavenger Hunt but none of the CMs knew anything about it. It was on The Flower & Garden show flyer but no signs of it. Not sure what happened with that.

We made it to Japan & Marlee Anne decided she wanted sushi again. She & Mike had eaten that for lunch but she wanted it again. I just wanted a Koki Gori. As we were waiting for Mike to get her sushi I checked my emails. BIG mistake. One of Michala's Aicardi sisters passed away. She was one of the first girls we had ever met. I was heartbroken. It was so very sad! Even in The Happiest Place on Earth the sadness of the world can creep in at times. While Marlee Anne was finishing her sushi Mike went to get my Koki Gori. I got cherry which is either new or I didn't know they had it. It was so good. I was nice & shared with Michala & Marlee Anne.

Fran Cosmo from Boston was there in concert. It was nice to hear some of the songs we knew. We headed on around The World Showcase & finished taking pictures. The flowers, topiaries, bonsai & all were just breathtaking. It was about time for Illuminations & Marlee Anne was getting anxious about the fireworks starting so we headed on out of the park. It was nice to get back to the room to get packed up before it got too late.

Disney trip day 2

2010-05-04T17:36:00.001-07:00

We headed over to Studios & this morning was greeted by Aunt Nay & John. John was so proud that he had us fast passes for Toy Story Mania later that day. John didn't know about our guest assistance cards. He was so cute as always!

We already knew our Woody was there today so we headed over to see him first. At least that's what we thought we were doing. We got to the Power Rangers first & my not at all girly girl wanted to see them of course. She saw the red & yellow one first then the blue one. By the time we got up there to see the blue one he was being called to the car. He quickly told them to wait & saw Marlee Anne. She was very excited!

We went over to where Woody used to be. Now he is across from the Toy Story Mania ride. Mater & Lightening McQueen is where he used to be. We decided we would see them & see Woody a little later. After we got pictures with Cars we saw the pink & green power rangers. We were all getting a little hungry so we decided Pizza Planet would be a good spot. Just as we were about to eat we got the famous call from Woody. He told us his hours & also where to sit for the parade.

Jessie was near Pizza Planet so we got pictures with her & also the green army men. After they left Bolt came out. This was his first week to appear so it was exciting to get pictures with him.

They have these new to us spraying fire hydrants. They were really fun to play around with & take pictures. It was time to head over to see Woody. They have a wonderful set up now with Woody & Buzz inside across from the ride. We were taken in the back door to see them. Woody jumped up & down & told everyone these were his friends. Every now & then in life something reminds me that there are some amazing people in this world that love my children for who they are. Woody made each of them smile that day along with making Mike & I smile. I know that's hard for some people to understand but some of you understand the full importance of that moment. It reconfirms why Disney is so special to us. To see our children being treated how the rest of the world should treat them means to much to me. Not special back door treatment but being treated that just because they cannot speak or walk doesn't mean they are any less important than anyone else. I know that Woody saw the love & thanks in their smiles that day. I know that his heart was touched! We had an amazing photo session with he & Buzz. Mike said something cute to Buzz & now I cannot remember what that was. I am putting this here so he will read it & remind me of what it was.

We still had a little bit of time before meeting the gang to ride Toy Story so we went back to see Mike & Sulley from Monsters Inc. While waiting to see them I got a text from Aunt Nay wanted to know if the 2 or 4 show of Beauty & The Beast was better for us. We had to at our parade spot at 2:30 so we chose 4. Mike & Sulley were really cute & always lots of fun.

Abe bought me a surprise. A Kermit the Frog magnet. LOVE frogs & especially Kermit. He also bought me a new Disney window book that I had never seen before. We usually don't buy souvenirs unless something just really hits us. Well this trip the most wonderful t-shirt hit me. It's white with black ringers with a black & white picture of Main Street with Walt & the only color is Mickey standing with Walt. Beautiful! I also found a ring that I could not do without!

Time to go meet everyone for the ride. We are so excited for them to be riding with us. Marlee Anne had already picked Nevada to ride with her but as soon as they walked up she picked John. Too funny! Immediately they started strategizing about how they were going to beat everyone. They did win!

We had a few minutes before we had to get to the parade so we went to Animation to see the characters. Marlee Anne saw The Incredibles. We went to see the making of Toy Story 3 which was really cool. Then we saw an artist actually drawing at her desk. Really awesome to see their work in progress.

Got to our spots for the parade & the family beside us was also there to see Woody. We love this parade because it's so much fun. Having Woody there playing with us was so much fun. They ask children out to dance with them & Woody motioned for me. I thought he was asking me to come dance & I said no. He was actually asking me to move so he could get up on the sidewalk with Mary Elizabeth, Michala & Abe. They were so excited & loved that! After we got some pictures & he got done playing with them he went back out to the street to dance with Marlee Anne some more. What an awesome time! Our friend Amy got to enjoy it with us too & made it even more special.

Next we went to Beauty & The Beast. I love this show any way but our Beast was there that day so I knew it would really get me. We had to check in at the umbrella & Marlee Anne was given her special birthday princess instructions. The show was wonderful & at the end Marlee Anne went up to the stage & was given a rose by Belle & Prince Adam. After the show we were asked to wait for a surprise. I heard a voice & it was Zak. How awesome! We haven't seen him in so long. It was really good to see him. We thought that was our surprise & the cast member said ok we are ready for you. We went back stage and met the cast & had pictures. Very nice surprise from Zak.

We had planned to go over to Epcot to eat at 9 dragons with Aunt Nay. However it was booked. We know to book ressies ahead of time but we weren't sure what time would work for her. Right after meeting her over there Mike accidently hit Marlee Anne's sore on her foot & it bled & bled. We were at guest relations & the nicest CM from Tennessee came to her rescue. She had been wanting a squirt bottle for the past two days but I wouldn't buy her one because she had one at home that she was supposed to remember to pack. So any way this CM didn't know that but he brought her one. Made her day! We went to first aid & got her all taken care of.

We ended up eating at the Lotus Blossom which was very good. Once again Michala wet everything! Luckily I had extra shorts for her this time. Marlee Anne was so excited Aunt Nay was going to hang around with us for late night at Epcot. We had the best time riding rides with her. Test Track & Soaring. Marlee Anne even got her to ride Mission Space for the very first time. The Flower & Garden show was unbelievable. We went through the butterfly house & the fairy garden. I cannot wait to share those pictures with ya'll.

We hopped on the monorail & headed back to our room. It was such an emotional day with so many wonderful & happy moments.

Disney trip day 1

2010-05-04T16:56:00.000-07:00

Thursday morning around 5 we left for Disney World. We had planned this trip last year for Mary Elizabeth's 17th birthday & Marlee Anne's 8th birthday.

We had a wonderful drive down. We got to The Contemporary & were shocked that our room was ready. We could not have asked for a more perfect room. Ground floor with sliding glass door that opened right out to the pool with the beach just to our right. I told Mike for them to have a great time at the parks I was staying there the whole time. It was the first time ever going to Disney that I was not anxious to get to the parks. It was absolutely lovely & so very peaceful.

While I was unpacking & letting everyone stretch out, Mike & Marlee Anne headed for the waterslide right outside our door. It was very neat to get everything done & get to watch them.

When they got done they went upstairs for a snack. My friend Sue had told me about a dulche de leche cupcake. Mike saw it but said I could go back that night and get one on our way back from the park. He got us a black forest one to try. It was really good.

Then we headed over to Studios to see Aunt Nay. Here comes Aunt Nay, John, Amy & we got to meet Stephanie. We always love making a new Disney friend. It was so wonderful to see the others. We were so glad to be there.

We told Marlee Anne that she could do whatever she wanted to on this trip. Every Disney trip Mary Elizabeth, Michala & Abe are quite spoiled along with Marlee Anne. However this trip we really wanted Marlee Anne to choose. She had put lots of thought into this as had our Disney friends. It was such a special time for her & for us! I think sometimes we let her get lost in all the daily challenges of life. This special time just for her was really great! Thanks to our special Disney friends cause without ya'll this wouldn't have happened! Marlee Anne's motto now is if it's Disney Aunt Nay can make it happen!

She wanted to ride Star Tours first. Ya'll need to remember she is so her daddy's child sometimes. This trip really showed it at times. Mike, Michala & Marlee Anne rode it while I fed Abe & Mary Elizabeth sang to us. She was so excited to be able to be outside. When they came back they were laughing so hard. They are still laughing at Michala's expressions on the ride. I hate that I missed that!

We had already planned to go to Magic Kingdom for late night so we headed out to go back to the Contemporary. We parked & then walked over to the Contemporary. It was so funny because later that night checking my messages Josephine had said to make sure to take that nice walk. It was indeed to wonderful!!!

The park wasn't too crowded even though there were two Spectromagic parades that night. We ate at Casey's before heading over to Big Thunder Mountain Railroad. Mike & Marlee Anne rode that. I sent a text to my friend Angie while we were waiting. They were in the park but about to head out. We decided we would try again later to meet up. Next was Pirates of the Caribbean for all of us. When Mike picked Michala up to get on the ride she was soaked. Back in the wheelchair & out the back way.

Michala always seems to get new clothes at Disney some how or another. We went to baby changing to get her cleaned up & I was off to get her some shorts.

Oh & I should back track for those of you that didn't read it on facebook. If you have a child that only has one leg make sure you pack the right shoe. I did not! I went to put her shoe on her to go to the park & it wouldn't fit. Yes I went as far as trying it on. We donate her other shoe to the shoe swap for other children that only have the other foot. These were new & I had not sent off the other shoe. I just saw it, grabbed it & packed it. I didn't say a word to Mike & asked him to put her shoe on her. He picked the shoe up & looked at me. He knew right away without even trying it on. My excuse is he gets a little more sleep than I do.

OK so we get Michala all cleaned up. I tell Marlee Anne she can pick anything in the park to do. She picks The Hall of Presidents. Yes I said Hall of Presidents. WHOSE child is this? No doubt her daddy's! I have to say that it was really good. We all really enjoyed it.

Afterwards she wanted to ride Haunted Mansion. Turned out to be perfect timing because I could do everyone's meds while she & Mike did the ride. Plus it was time for the fireworks. Marlee Anne hates the loud noise & Michala loves it. We couldn't flush the toilet in the resort without her having a startle seizure but the fireworks she loves! Got done with meds just as the fireworks were over & they were off the ride.

We decided to get in one more ride before heading out. Buzz Lightyear it was. However on the way we had to pass the Indy Speedway & Marlee Anne really wanted to do that. That ended up being the last ride.

We got out of the park just before the last Spectromagic parade started. We took the nice walk back to the Contemporary. I stopped by the food court to get my cupcake & they were sold out. I was bummed but knew I had a few more days to try to get one.

medical stuff

2010-05-04T16:27:00.000-07:00

We think that we have Michala cleaned out now. We were aggressive with treating her & all seems well now. Thanks to everyone for all the help & advice! Mike asked if you could get too much fiber. My answer was no. However Abe's GI specialist today said yes. Of course my husband is usually right. URG!!! She said rule of thumb is age plus 5. Michala should be getting 17 grams. She may be getting a little more than that but not much. She also said make sure she is getting plenty of fluids which she does. We will take Michala to the GI when Abe has his follow-up.

One thing we have run into lately is that Michala holds her bladder. When she had the ultrasound it was so full. When she does go her big diapers will not even hold it. She soaks everything. I know this has been addressed on the Aicardi listserv but looking back I could not find any info. Any advice would be greatly appreciated!

We did find out that her carnitor is low. That could have contributed to her recent impaction. It's never been before that we know of & she has never taken carnitor before. We will start that soon so hopefully that will help.

The Mayo Clinic found out that Abe's tryptophan issues was due to his vigabtrin. We had already made plans to start weaning him before we found out about that. We started weaning him yesterday. Please pray we are able to get him off it successfully. My fear was that the vigabatrin may be taking care of some of his seizures. He still has seizures all the time on 4 seizure meds & 3 rescue meds. It's our hope that getting him off some of those will allow us to see more glimpses of him. We started weaning him yesterday. So far so good. The past two times we have tried to wean him the first increase threw him into such bad seizure we had to go right to the ER because we could not get them stopped at home.

His GI appt today went great. She had put him on a diet last time because with his suspected mito disease a lower weight is better for him. He had gained 2 pounds but she was ok with this. We don't have to go back for 6 months unless he needs a bigger gtube.

Thanks so much for your continued prayers & support!

reflections

2010-04-24T12:16:00.000-07:00

What a week this has been! A week ago I received the early morning call from my friend Debbie telling me her son Dillon passed away. What heart ache! Dillon had a mitochondrial disease that took him away little by little. The doctors said there was nothing else they could do for him. It hit too close to home for us. We miss Dillon & hurt for his mom Debbie & his brother Corbin. Monday was visitation & Tuesday was the funeral. They need our prayers now more than ever.

Monday my sweet friend Carman took her week old baby in for her check up. They found a hole in her heart. She spent several nights at Egleston. She will be having open heart surgery when she is 6 months old.

On Wednesday one of Michala's Aicardi sisters passed away. She was 11 months old. Her mother & I had recently met online. It was so very hard to accept this for all of us. On Thursday another one of Michala's Aicardi sisters passed away. Again our extended Aicardi family was hit hard. Please remember these two families in your prayers.

Michala's Aicardi sister Kaia in Norway is not doing well. This has been hard on us to be so far away. We have reached out with our prayers & support. Please keep she & her family in your prayers.

I realize tragedy, sickness & sadness hits all around the world every day, every minute, even second. It's hard sometimes because our lives have been affected with Mitochondrial, Panhypopituatarism, Aicardi, Epilepsy, Cancer, Austism, Clubfeet, Infantile Spasms & so many more medical things that our circle of friends & extended family is large. We are so thankful for that but when it hits it hits hard & sometimes so often. I have to say it does make it nice to have someone awake on the other side of the world to reach out to for answers at 3:00 AM.

Earlier in the week we found a place, a spot, a knot on Michala's stomach. We thought constipation & began aggressively treating that. No big changes. Every "c" mom has this wonder & doubt tucked into the back of their mind whenever something new, questionable & different arises in their child. Friday morning Mike said you really need to take her to the doctor. All week I tried my hardest to push the possible of "c" to the back of my mind & say it was constipation. Friday I took her to the doctor. We were told it was a mass, possibly a benign tumor. The unsaid stuff is what got us. The possibly part of it. They were going to schedule an ultrasound & KUB at Egleston.

I had posted a message on FB & asked for prayer for Michala. I wanted everyone to specifically pray she was constipated & she would poop. LOVE FB! Love getting responses back from all over the world knowing she was being lifted up right then.

Friday night I don't know if I ever closed my eyes until Mike woke up & said please go to bed, I will stay up. God bless him! He does that quite often & seems to know just when I need it. I was woke up to Michala laughing hysterically.

I jumped up & ran to her knowing it was a bad seizure. When I got to her I said Michala. She looked at me & smiled her funny grin. Then she laughed. No seizure so I started checking her tummy. NOTHING! No mass. Yesterday I couldn't even say or type the word mass. Last night this huge thing was sticking out of her stomach. This morning it was gone. No poop - nothing but it was GONE!

Yesterday I asked for prayer for poop. This morning I was reminded just how very big my God is. He took it completely! No questions asked. He is so much bigger than I realize sometimes. As the rains came & the seizures increased I was able to have the reminder that our God is big enough to carry us all through this journey.

Have a peaceful & rainy Saturday. Well if it is raining in your part of the world. If not enjoy the sunshine! Whatever you do be blessed & thankful!

With a thankful heart!

Kelli

Fairy House tour

2010-04-24T11:55:00.001-07:00

Come to Chimney Park for the second annual tour of enchanting fairy houses. May 1, 2020, 2-5 PM - free event. Experience the magic as you wander through the park enjoying music, storytelling, crafts, and exhibits. Gather 'round the maypole. Bring your own natural materials to build a fairy village.

Enter to win raffles, and participate in a silent auction of area artists' workon display in the library meeting room beginning April 19.

Chimney Park is just behind the Newton County Library

Please pass information on. Also I have attached the flyer for anyone that would like to print it to hand out or display.

Thank you!!!

Stella & Dot reminder

2010-04-15T17:05:00.001-07:00

Just a reminder about my Stella & Dot catalog show. It is soon to close. If you would like to order please go to http://www.stelladot.com/sites/sjs and click find your hostess. Type in my name & order. Thanks so much!

Kelli

Sunday at the Masters 2010

2010-04-12T08:25:00.001-07:00

WOW!!! I am so exhausted. It's that wonderful exhaustion when everything is right with the world.

A few weeks ago Mike asked me to go to the Masters with him on Sunday, April 11th. There are some discrepancies there because Marlee Anne said I invited myself. She really wanted to go with him. However I was the one going.

I emailed Mo right away to see if you she could come keep the children on that date. She emailed me right back and said she had a conference then and couldn't. I sent Mike a text and said it's a no go Mo can't come. Right after that Scheree called & said what are you doing. I told her & she said I will keep them. No hesitation whatsoever just that she would do it. I told her it would be a very long day. She didn't care.

I wanted to have a nurse on call just in case. So my prayer warrior Bonnie said she & her husband David would be on call for us. They came over & got their orders & were ready to go. Thankfully there was no need for them to be called.

My only other hesitation was not having contact because I couldn't take my cell phone in. My friend Paige whose husband works at the Masters took care of that part for us. That eased some of my anxiety.

We left at 7:00 in the morning. The drive down with just the two of us was so very nice. We got there and had breakfast. I had a egg salad sandwich & sweet tea. We did some shopping & then walked the entire breath taking course. When we got Magnolia Lane they were taking pictures. There was a two hour wait. The lady told us to come back around 2 & we wouldn't have to wait as long. We stopped by to see the 3D TV which is way too COOL!!!

One thing that was very nice is that several places they had phones for you to use. I called twice to check on them & once for Scheree to text Mark to see where we were supposed to meet them cause we couldn't find them.

We got to the 16 tee & met them there. Mike & I decided to go back & get our picture made before we sat down with them. We walked back up to the Club House for our picture. The nice Italian father & son in line behind us checked to see how long the wait was & told us half hour. It was exciting to get our picture made together. I have attached it for ya'll to see.

When we got back to 16 we got some lunch before sitting down. Mike had some BBQ & I had a pimento cheese sandwich.

It was so exciting & so much fun to sit with Paige & discuss all the players as they went by. Mike was enjoying his time with his friend Clay. Mark was busy making new friends & taking pictures. Since they got there before us they had chairs sitting right at the ropes for us. I loved seeing all the players going by. They were close enough for us to reach out & touch them.

I wore my flip flops. Well my Yellow Boxes to be exact because they are the best & oh so comfortable. I slipped my feet out & in just a few minutes someone from The Masters came over & got on to me. He said I hate to do this but if you are not going to wear your shoes you have to keep your feet down. He said in a little bit the leaders are going to be coming through & you are going to be on TV. If your bare feet are on TV I will get in trouble. I apologized & told him I was putting them back on right then. I just knew if I didn't I would get excited & cross my legs or something & my feet would show. I didn't want to get that sweet man in trouble. Well in just a few minutes he comes back. He asked us all to put our cups & water bottles behind our chairs so they wouldn't show up on TV. They even said something to the camera a little while later.

When it was time for the leaders to start coming through a camera man came right beside us. He was really nice to keep me updated on Phil's progress. I have gone the entire week not mentioning to anyone who I was pulling for or who I was sure I would be watching get the green jacket this year. Each year I jinx him. I know that Mike knew but he was very good not to discuss it. I have to say I was very proud when he walked past us.

After he & Lee finished the 16th hole we said our goodbyes to our friends & headed to the front of Eisenhower Cabin where the green jacket ceremony would be held. We got a great place to view it & waited for Phil to finish up. It was really incredible to watch all the golf dignitaries from all over the world come in for the ceremony. After that Phil's family came in & were seated. Seeing Phil receive his 3rd green jacket is something I will remember forever. It was an awesome experience.

If you have never been to Augusta Nationals then think of what you have Heaven pictured as or an impeccable manicured lawn that you can't even describe. There were green rolling hills with any color of azalea you could think of. The trees were so majestic. As Mike & I walked back to the back gate where we parked there were probably 20-30 people spread out over the course that we could see. It was so quiet & so peaceful. I felt honored to be walking hand in hand with my husband at such an beautiful place.

Our drive home was nice too.I was so ready to get back to see my babies. That was such a long time to be away from them. However I did good. Scheree & I were discussing that when we got back home. Thanks to the prayers of everyone I was very calm & had a wonderful time. One brief time I got a little anxious. Because of prayers all our babies did great. Scheree never got nervous & did an amazing job. I am still overwhelmed that she offered & wanted to stay that long in our home with our precious children. How blessed are we!

It hit me last night how calm & peaceful I felt. I thought back over the day. I realized Mike & I are still here together. We still fit. We still work. Not once did we talk about doctors, hospitals, appts, medications or seizures. There was no stress. I sometimes wonder if the couple that fell in love with each other almost 25 years ago are still there as a couple without all the other things holding us together. Well low & behold we are there - stronger & closer than ever! I realized yesterday just how very much I am blessed & how very much in love with my husband I am. I mean everyday I know I am blessed. I know that I love Mike also. Even though neither of us like to leave our children & we work so well as a family unit, the hours with just Mike meant the world to me. I don't think words can convey that to anyone, not even him.

I am more thankful today to God for bringing this amazing man in my life and giving us 4 beautiful children. I am so thankful to the wonderful friends in our life that made this day happen & gave me a peace.

With an overflowing grateful heart!!!

Kelli

Sunday at the Masters 2010

2010-04-12T08:25:00.000-07:00

WOW!!! I am so exhausted. It's that wonderful exhaustion when everything is right with the world.

When we got back to 16 we got some lunch before sitting down. Mike had some BBQ & I had a pimento cheese sandwich.

With an overflowing grateful heart!!!

Kelli

You're invited to Kelli Hopkins' Online Stella & Dot Shopping Event

2010-04-01T16:40:00.001-07:00

Party Info

Ordering deadline:
Sunday, April 18, 2010 11:59 PM

Hosted by:
Kelli Hopkins
770-786-0479
mommie2angels@bellsouth.net

E-boutique Address:
Shop the E-Boutique

You're Invited!

Hi Friends & Family,

You're invited to an Exclusive Online Stella & Dot Jewelry Shopping Event hosted by Kelli Hopkins

Have a little fun and splurge on amazing collections like the semi precious and sterling silver heirloom pieces and the editor adored and celebrity coveted signature styles. You may have seen it featured in Lucky Magazine, Redbook, InStyle and Good Housekeeping or on celebs like Debra Messing and Paris Hilton, just to namedrop a few. This irresistible line, not available in stores, is such an affordable way to indulge in these tough economic times. Women can?t get enough of the Stella & Dot!

Join the online party, shop fabulous styles and enjoy the party perks especially for you. And remember, good friends share their best style secrets with friends, so forward this along!

My niece Staci has started her business with Stella & Dot. Originally I decided to host a catalog show to help Staci get her business going. After looking at the jewelry I saw some that I would love to have. By taking the time to look at the website and placing an order you will help Staci get her business going and help me get some wonderful jewelry. Thanks so much for your time!

Please RSVP by clicking below:

Count Me In

Kelli Hopkins
Independent Stella & Dot Stylist

Staci Satterfield
Independent Stella & Dot Stylist
678-725-3572

Discover what all the buzz is about at my Stella &Dot web site:
http://www.stelladot.com/sites/sjs
stacisatterfield@yahoo.com

Mary Elizabeth's 17th birthday

2010-04-01T09:03:00.001-07:00

Every time I type or say Mary Elizabeth's 17th birthday I have to stop a minute. It's hard to believe. How very wonderful! We are so very blessed. She has surpassed her life expectancy by 14 years. A great reminder that God is in control.

Yesterday was her 17th birthday & what a beautiful day it was. I have learned more from Mary Elizabeth in the past 17 years than I could ever learn from anyone else. She has taught me what is important in life. She is the most understanding, compassionate & forgiving soul I have ever met. She has taught me about unconditional love, faith & trust.

I would not have chosen this life for myself. In my dreams this is not the "perfect" life I created. I am so thankful for unanswered prayers. I would have missed out on so much in life without this precious angel.

My prayer is that she has also blessed your life as richly as she has blessed mine. Thank you for sharing the past 17 years with us.

Love ya'll!!!

Kelli

Mary Elizabeth's 17th birthday

2010-04-01T09:03:00.000-07:00

My prayer is that she has also blessed your life as richly as she has blessed mine. Thank you for sharing the past 17 years with us.

Love ya'll!!!

Kelli

appt update

2010-03-29T12:33:00.001-07:00

Mike has taken Marlee Anne to the library so I thought before I try to compose myself once again I would write this email. When I called home my sister asked if I could tell her how it went or would I rather send an email. It hit me it's easier to send an email cause ya'll don't have to understand my spoken word through the tears like she did.

I had visioned writing this email to ya'll saying woohoo it's great news the first neurologist that called us can't read. However that is not the case. He does know how to read & he read Abe's MRI report just fine. Dr. Flamini could not give us a time line. They do not know how fast it is progressing. He doesn't know of anything to slow or stop the progression.

As if that wasn't enough to handle for the day he went on to Abe's EEG. He has Lennox-Gastaut Syndrome. I so hoped he didn't but as his seizures continued to progress & not be able to be controlled I did wonder. It's a difficult-to-treat form of childhood-onset epilepsy that most often appears between the second and sixth year of life, and is characterized by frequent seizures and different seizure types. Definitely not a diagnosis we wanted.

We will increase Abe's lamictal over the next 5 weeks. A week after that we will try to decrease his vigabatrin by 1/4. If he starts having those other seizures again we will put him right back on it. He is on so much seizure medication & it would be nice to get him off some if we can do it safely.

His EEG showed that he is having seizures all the time. So many so they couldn't count. When he is not having a seizure he is having some type of activity on both sides of his brain. That's the reason we very rarely catch a glimpse of a smile, babbling or anything else. Not much clear time. Working on overload most times even when he sleeps.

Michala's EEG did show the drop seizures. She recently started her period (I apologize if that is too much info for some of you but it's needed in case some of our seizure knowleagble friends think of something). Once she started it seemed to have a change in her seizures. That along with the lamictal increase. He increased her VNS output. Right now we will hold where we are with her & let her body tell us what she needs.

I hope that I covered most everything. I go from moments of anger where this wall comes up, to complete exhaustion and breaking. This being moldable by God stuff is exhausting! I guess it's me making it that way. I was hoping once the appt was over the stress would kind of go away. It's lingering. It's hard to go through this grieving of losing a part of our children each doctor appt.

Yesterday as we had pictures made with the bunnies Aunt Kim got for the kids I watched Abe with the bunny & wondered would this be his last picture with bunnies. Mike & I jumped in the picture with all four of them & I thought is this going to be our last family picture. I did that with Mary Elizabeth & with Michala. I am ready to be past this phase. I know though that I have to deal with it on my own time & get to that point.

Thanks so much for all the prayers & support & for standing in the gap for us!

No Matter What Happens

2010-03-27T18:38:00.001-07:00

Almost 17 years to the day I was sitting at Julia A. Porter listening to our dear friends The Johnson Brothers sing. As I sat there having contractions we just knew Mary Elizabeth would be born any minute. Jason dedicated the song No Matter What Happens to me because it was & still is my favorite song. Little did we know that song would become the theme for our lives.

Mike & I try so hard to be strong but the ways of the world wear on us. Sometimes I so wish we could leave & only have our family of 6 to deal with. Instead God intends for us to use ourselves & our family to His glory. We are not perfect & are actually a long way from it. We do however try each day to live our life for Him.

Each day I sing this song at least once. It's the name of our blog & will be the title of my book. So many people have asked why. I asked John to fix it where I could have it on my phone. He sent it to me Friday afternoon. While playing it for Mike, Marlee Anne said mom that's the song you always sing. So now I would like to share it with ya'll.

It's a beautiful song that means so much to Mike & I. It has reminded us why we continue this fight for our children & why we give God the praise.

Thank you Jason, Jeff & John Johnson for your lives, your friendship, your love & your prayers. Thank you for this beautiful song that has carried us through some rough days in the past 17 years. It has also been there with us through more often some awesome days!

http://www.onetruemedia.com/shared?p=a9fdf7e4354e554b8aa494&skin_id=701

With thankful hearts!

Mike & Kelli

Abe's MRI results

2010-03-20T11:02:00.001-07:00

Ok the Shriners update is not what is making me sick & upset. It's Abe's results. This is not something I am ready to talk about but people keep asking about results so here they are.

Yesterday I got a call from Dr. Goldstein. He started our conversation by saying he was very very sorry. Never a good thing. I remember taking a deep breath & thinking we have gotten bad test results before.

He said Abe's MRI has gotten worse. He said it shows atrophy (wasting away). Sometimes I think it's better not to know the meaning of words. However I know that word well. As soon as he said it I thought - no it cant' be. He went on to say there is evidence of a progressive metabolic disorder.

He said he would send the results over to Dr. Shoffner so they could hopefully come up with a plan for supplements to help slow the progression. Immediately I thought what if we had not had a break in giving him CoQ10. What had I done? Have I caused this progression? All I could think is I need to talk to Mo. I need to hear her thoughts. I need to ask questions she & Dr. Shoffner will hopefully have the answers to.

When I hung up the phone it didn't hit me. Slowly over time the truth began to sink in. It has hit hard. I have gone from being angry, to hurt, to sad, to scared. Right now I am thankful. I can only tell you that that came from God. I am so thankful to be thankful. However that may be different by the time you read this.

I am determined not to let Satan take my joy. God has blessed me with such an incredible family. I don't want to miss one minute of those blessings because I am worrying about things I have no control over. That is so easy to type & much harder to do. Even though this diagnosis has hit hard we will continue to serve the mighty God that we do. We will continue to allow Him to use us in whatever form & wherever He wishes. We have received hard news before. We were told Mary Elizabeth would not live past the age of three. We were told Michala wouldn't survive her cancer. We know that all this is in God's hands. He had this all planned out way before now. We will continue to rely on Him to carry us through this journey.

Now there is an urgency to find out how progressive it is. How much did it progress since the first MRI?

I am so hoping that when Mo gets back in town her thoughts will be different. I am praying for different thoughts & a better outlook. I so hope they were read or interpreted wrong.

Please pray for Abe. Also for us as we come to accept yet another new chapter in our lives.

Shriner's appt update

2010-03-20T10:31:00.001-07:00

Everytime I even think about writing this I get sick at my stomach, start crying yet again & now I am shaking. I thought if I didn't write it it would go away. Still this morning the reality is here.

Thursday morning we left to go to Shriners hospital at 5:30. I was feeling really sick. My nerves I guess. The drive there was very nice. It was beautiful to watch the sky slowly light up. God was painting this glorious picture for us to enjoy on the way. They colors were
amazing.

We got there an check in was great. Mike took Mary Elizabeth down to x-ray. While we were waiting on them they called us back, triaged Michala & put us in a room. Mike got Mary Elizabeth triaged after her
x-ray. He got her back to the room & it was time for him to go for his conference call for work.

Mary Elizabeth was there for CP clinic. The doctor seeing her was young. She was good & seemed knowledgable. She said that Mary
Elizabeth's curve in her back had gotten worse but was still ok without surgery. She said the good thing was that it was not the type of scoliosis that would impact her breathing.

Next we waited for genetics. A new geneticist came in which I hate only because I hate going over all those questions. I should have a tape recorder. I think that's all suppose to be part of my healing & growing process. I think I was having a hard to mold day.

She was concerned about Mary Elizabeth curve until she saw Michala. She said oh Michala's is much worse than Mary Elizabeth's. You know just kinda of that more & more stuff coming in. She left & said Dr. Saul would be back in. He is the one that discover the unusual gene
mutation on Michala. I really like him.

Well he came in and said I know that Dr. Shoffner (metabolic specialist Mo works for) has already told you what an unusually rare family you have. He said obviously we want to find a link between the
3 children but it doesn't look promising.

They asked us to enroll Mary Elizabeth & Michala in a study they are doing. He said it may not help them but the information would help others. We told him yes. They ended up getting blood from all of us except Marlee Anne. They were great at getting the blood even though it took about an hour to get it from Mary Elizabeth. Blood draws are always stressful for us but it helped that we stayed in the room & they came to us to get it.

The ride home was beautiful too. Everyone did great. Michala had had enough about an hour from home & wasn't so happy.

I feel like I should stop here & start a completely different email. You know what I will just for my journaling sake.

Thank you so much for the prayers for our trip to Shriners.

WHEN?

2010-03-11T21:30:00.000-08:00

I started this note earlier today. Originally it was going to be a blog post but I thought I should update on our two appts this week. Well at least a little I did. I didn't finish until tonight so it's quite the mixture.

Waiting on Abe to come back to day surgery. He should have been done with his MRI & in recovery by now. I am frozen to my chair & don't want to ask. Being so well in tune to me & my anxiousness Mike walks
outside and ask. They are checking now.

As I sit here praying part of my prayer includes something I have been praying about lately. When do we get to the point that we say enough is enough. I am praying for God to clearly say ok we are here. We have searched all we can to help Abe. Here is the child I have created. Here he is. Take him, love & nurture him.

My head wants more. My head wants answers. My heart says enough. My heart has put him through enough.

I don't remember the exact moments or even years when we got to that point with Mary Elizabeth & Michala. I just know the feeling of peace that came flooding over me when we said ok. It's ok. We will now choose to treat their symptoms instead of putting them through unnecessary stress just to find answers. Especially if those answers are not going to help & are not going to change things. If it's something they can do to help get answers or find a cure for someone else & nothing too stressful or painful is involved then ok. Other than that I am at peace with their lives.

For the most part I have good days. I love my family & I cherish the blessings they are. Some days that is overshadowed by seizures or all the overwhelming medical junk. Usually insurance & medical bills &
being tired from jumping through hoops.

Yesterday as I was talking to my niece I broke down worse than I have in quite sometime. As I was crying Marlee Anne came to see what was wrong. I told her I was ok. She sat beside me, put her arm around me &
said mom when Abe gets to heaven he will be fine. He will run & play & everything will be fine. It's like sometimes she becomes this wise adult sent to teach me so much.

Then just the other day she was talking about soon when Abe walks & talks. She said she can't wait to hear his voice. She hopes & longs for so much for him. A feeling I know oh too well.

I will admit this has been a very long & stressful week. I am so glad we have those appts behind us. The ERG is something I never want to do again. I know never say never. He cried & so did I. Today was just long.

We should get results in a few weeks. It hit me today that I really do not think I want to know. Who wants to know how imperfect, abnormal or messed up their child's brain is. We don't dwell on the negative & I
am afraid this is what that will do. However if it gives insight as to help with his seizures then ok I am ready to listen.

I pulled put my bulldog skirt a couple of times this week. It's now packed away for the weekend.

Tonight we were blessed with a visit from the UGA students from the Metropolitan Design Studio. Along with some awesome local friends. It was a fun visit & a great break from the stressful day. It was so nice
of them to take the time to come by. It really meant a lot to us. More than any of them will ever realize.

That brings me to this & then I will stop for now. You know when you have that leading or tugging on your
heart from God to do something - do it! You never know when you may turn someone's day or even their life around.

This week I received an email from a dear friend of mine, yes dear! She was sharing some thoughts to my
Emory email. I responded back to her & just by her opening that door for me to share more with her it changed my outlook drastically. I went away knowing without a doubt she was praying for those specifics that I asked of her. A friend stepped in at the last minute to sit with the girls so that I could go with Mike & Abe to Emory. Another was a call from my precious friend telling me she loved me. Then a text from a prayer warrior in my life simple saying she was praying for me. Thing is all those things were perfect
timing that could only have come from God's guidance.

Thankful for those in my life that listen to God's guidance & follow through to help carry me through this journey. Whether it's a facebook message, a phone call, a text, an email, cookies, coffee, a card, a pavlova or especially a quite heartfelt prayer - thank you! Praying I will yield myself to God & be used for HIS glory.

more appts

2010-03-08T18:44:00.001-08:00

I honestly wanted to title this email more crap. However my mom taught me that wasn't a nice word. So instead it's more appts. Any way you get the idea or you will after this email. I apologize in advance for the tired, stressed, shortness that I am trying to keep contained. I don't like feeling this way and have been working & praying hard to get my positive spirit back. Satan is working overtime & knows just the right buttons to push. This too shall pass!

Tomorrow Abe has to go to Emory for an ERG. Electroretinography (ERG) is an eye test used to detect abnormal function of the retina (the light-detecting portion of the eye). Doesn't sound too bad right?! Well I still have nightmares of when Michala had it done when she was a baby. I said ok about having it done with the agreement that if Abe has a hard time with it I can request them to stop at any time. I agree with Mike & Dr. Lipsky that it's great to have the info if it can be obtained easily. Please pray that it's not stressful on Abe or us for that matter. It can take any where from 2-4 hours by the time they get his eyes dilated & do the numbing drops.

After that we have to go over to Egleston for a blood gas draw to see how his CO2 is. Please pray that it has gone down. We hope to get an appt with pulmonology soon so that we can get this resolved.

Thursday Abe is scheduled for an MRI. Easy enough if it wasn't for his need for supplemental oxygen. Because of that he cannot be sedated. He will have to go through day surgery and have general anesthesia. I have filled out his precertification for surgery so hopefully we won't have to have another day for precert in the hospital.

I realize none of this is terrible & it all could be worse but it's my baby. My heart hurts to watch him endure all this. However I know it needs to be done. All this leads me to another topic for another day.

Thanks so much for your continued prayers & support.

We're HOME!!!

2010-03-03T19:35:00.001-08:00

Yes that's right we are all home together tonight. How sweet it is. I am completely exhausted! How that can happen in as little as 36 hours I don't know. It actually feels like days.

First I have to thank everyone that pitched in & helped out to make this happen all at one time. We couldn't have done it without ya'll. Thank you so very much for everyone's prayers. We couldn't have made it through this quickly without those prayers.

The hardest part was actually writing down how many seizures, the length & describing them. Whenever I say how many they have I tend to underestimate. I realized these past two days & one night just how much I underestimate.

The got plenty of data on both to know the type of seizures they are having. Hopefully we will have a plan & direction in the next few weeks.

Dr. Cheng came in to tell me about Abe's seizures first. Well let me go back. First thing this morning Nancy, NP came in and said boy he had A LOT of seizures.. She said I think we have enough data. When Dr. Cheng came in he demonstrated them, described them & told me all about them. He said you have quite an unusual little boy here. HA!!! Where have I heard that before? He described the background of his brain as being jumbled & cloudy. He said that his seizures are all over the place. That explains why we see so many different looks of one type of seizure.

He came in a little later to talk about Michala. He was quite cute talking about her left & right hemisphere. Her seizures come from both sides he said. Then he said and sometimes they even jump across even though she has no corpus callosum. Well then! She is having drop seizures which is what I thought they were. I just weaned her from Banzel because it was making her so irritable. Now I am told this is probably the best medication for these types of seizures.

So any way we will have a plan soon. I pray!

Abe's CO2 was 34 from yesterday labs. It's supposed to be 20-28. They repeated it today & it was 38. They ended up doing a blood gas after we had been discharged. If it had come back abnormal other than the CO2 being elevated they would have kept him. It was all fine except his CO2. We have to go back in a week to have the blood gas repeated.

His CO2 being high triggered some other questions so more test are being done. Some that will take a little bit of time. If it leads us closer to a diagnosis then this was good. However it's just "one more thing". I wasn't ready or prepared for one more thing.

I had some what of a melt down last night which was witness by some dear friends. Thankful today they are still dear friends & carried me through that time.

Sara shared this scripture with me last night. Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid. John 14:27

I have read that scripture so many times before but last night it had new meaning for me. I was so stressed over seizures I see Abe having every day. Not knowing when or if to give rescue meds & feeling like a terrible mom. I read that scripture and a peace came over me. The seizures, the things I have no control over & cannot change are of the world. Taking those away will not give me peace. It will make me feel better I am sure but there is sure to come something else that will become a thorn in my side. My peace HE will always be with me....

No Matter What Happens no matter what trial I must face I will constantly speak of His glory and grace (Johnson Brothers). I hope this is what the doctors & nurses saw in me. I hope this is what the world sees in me. Not me but HIM!

Thanks again for all your prayers!

Much love!

Kelli

Update

2010-03-02T19:23:00.000-08:00

I am sitting in Michala's room using Sara's laptop. How nice to have
this outlet to share my thoughts. Thanks Sara!

We called the hospital this morning at 6:30 & were told that their
rooms were not ready & to call back at 8:00. At 8:00 we were told to
be at the hospital at 12:00. We got checked in and by 2:30 they had
Michala all hooked up. We are still waiting for her to have a seizure.
Praying she has one soon. She got terribly upset while being hooked
up. So thankful Mike was here with her for that. They were able to get
her lab work done too with only two sticks.

By 3:30 Abe was hooked up. He has had a seizure that last over an hour
with maybe a little bit of a break. They were able to get his labs
after only two sticks too. They gave him 7.5mg of diastat and he
started right back up into a seizure. Finally found his magnet and
after a couple of swipes he stopped. He is resting now. I didn't want
to make the call about the diastat. I wanted to make sure there was
enough info on the VEEG. I feel really bad!

This is so stressful! I am sick at my stomach! I want my mama. I want
this all to go away. Please pray Michala has a good seizure tonight &
one in the morning & they will say ok go home. At home they are still
having them but at least I am not sitting waiting on them to happen.

We have had wonderful nurses & EEG techs. The food leaves A LOT to be
desired. Thankful to have Kendra's muffins & Aunt Nay's snacks with me.

On a high note we got to see Linda & Tori. I even got to teach them
how to make dominos. They are now hooked.

Thanks so much for your prayers!

Heading to hospital

2010-03-02T07:36:00.000-08:00

This morning we were supposed to call the hospital at 6:30 to see if
their rooms would be ready at 8:00. We were told to call back at 8:00.
At 8:00 they told us to be there at 12:00. We are on our way in the
snow & sleet. Please pray for a safe journey there. Please pray Mike
makes it back home safely. Also please pray for our friends that are
helping out at the hospital that they can get there safely. Thanks!

VEEG hospital stay

2010-03-01T18:40:00.001-08:00

WHEW! I had to take a break from packing. I should be done & the van should be loaded but oh well.

We are preparing for the week stay in the hospital with Michala & Abe. This is for video EEG monitoring of their seizures. I am so hopeful that we will get good info so that we can get a direction on how to help them. My heart hurts from seeing both of them have so many seizures.

Marlee Anne was telling me that she didn't want us to go. I explained to her that the doctor is hoping to get information so that he can help them. She said then Abe can sit up & walk. Oh the faith of that precious child.

Ok we have lots of specific prayer request. First SEIZURES!!! I know all this time we have been asking for prayers for no seizures. Here we are asking for them, needing them. Please pray that they have seizures, plenty of them & early in the stay.

Please pray that Michala will do ok being confined and hooked up to all the wires. We always say that is why she went through cancer at such an early age. If not she would have been double trouble with all those wires & being accessed for chemotherapy. Marlee Anne is packing lots of books, magazines & some of her favorite toys. We hope that will help entertain her.

Please pray for the doctors & nurses as they take care of us & help us find answers & seek direction.

Please pray for our family as we are separated for the week. Ya'll know we don't do that well. Tears flow now as I stress over this. Please pray that Mike, Mary Elizabeth & Marlee Anne will all be fine with us gone & that we will be ok without them.

We have family & friends that will be helping out at the house & at the hospital. Michala & Abe will be in separate rooms & someone has to the stay with them both. We had some friends graciously volunteer to come & stay. Please pray for their families as they are away helping us. Also please keep everyone that is helping out at home in your prayers. We know this is a lot to ask & we are so thankful for the blessings!

OK I think that covers it for now. I still do not have it set up to send mass emails from my phone. I can update our blog from my phone & will do that as often as I can. http://nomatterwhathappens-kelli.blogspot.com/ If you would like to be notified of updates to our blog you can click subscribe to post which is at the end of our blog & enter your email address. I will update FB regularly too I am sure. All this depends on whether I am able to use my cell phone in the room with the EEG equipment without it interfering. OK that should be a prayer request too. I really like having that contact.

Thank you so very much for your prayers & support. Taking a deep breath & going on. My favorite scripture is Jeremiah 29:11. For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.

I have held tight to that scripture today.

Snow 2010

2010-02-16T13:59:00.000-08:00

What a great time in our 6" of snow that last about 24 hours. We all enjoyed it so much. We kept Mary Elizabeth & Abe inside in hopes of keeping their temps from dropping. The rest of us enjoyed sledding though. We took over 400 pictures. Here are just a few of our favorites. That night it snowed I walked outside late because it looked so bright. It was incredible how quiet & peaceful the world seemed. So beautiful!