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.

 

 

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

 

Day 1 - 2

 

Day 1 pics

 

Disney last day

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

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

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

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

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!