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.

 

 

quote

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

 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!

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

- A Mother's Day story of unconditional Love

Day 2 - last ones

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

Day 2-1

 

Day 2