Thankful!

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/

For a great cause

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

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

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

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!!!

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!

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

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!

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

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!

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!

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

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

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

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

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

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

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

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

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.

my babies' daddy

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!

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!!!

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

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

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.