ACTH THERAPY/HAPPY BIRTHDAY LEVI

Today is Levi's birthday. He turns two today. We are so grateful for the blessing of the gift he is to us. Levi is the toughest most inspirational person I have ever met. Many of us draw inspiration from different people overcoming all kinds of obstacles. Anjie and I are so blessed that in our lives that person lives in our house. He makes us smile every single day with his infectious happiness. He has fought so hard for his own life that many everyday struggles no longer seem relevant to us. Please join us in giving all of the credit to his life and story to God Himself. He is the giver and sustain-er of everyone of our lives. We may never understand why Levi had to bear this burden but what we do know is God has a plan for him. We are so anxious to find out the whole revelation of that one day. Just think in some states we could have made the choice to abort Levi at his gestation instead of allowing him his right to prove himself. Its sad our nation thinks that is OK but I guess that's a whole side issue for another time.

On a sadder note Levi is right in the middle of another fight. As I have written already this condition of infantile spasms is very bad. This is a giant our family is currently facing. We are hopeful still to get them stopped. We believe if so we are giving Levi a good chance to speed back up his development. We made the choice to go aggressive with the treatment at this time. The choice we made is to immediately start Levi on ACTH therapy. You can read about it here Basics of ACTH therapy 

 Basically its a high dose steroid treatment that when effective has been shown to wipe out the spasms. The treatment does come with a high cost. The side effects can be very taxing. It also causes immune suppression which means we won't be taking Levi anywhere for the duration of the treatment.  The doctor said we could take him out but not around sick people, We realize this time of year that is virtually impossible so we are choosing to be conservative. We expect this treatment will last about 4-6 weeks beginning tomorrow. Anjie will give Levi a shot each day. As usual we ask for your prayers. We are praying specifically that the spasms will stop and the side effects will be minimal. Please pray for Anjie and I to have patience and strength throughout this. I will try to keep the blog up to date as we move forward. 

Levi is getting stronger in his sitting. Check him out in his Cam Newton jersey.

No Luck Yet

I really wish I had good news to report. We have tried to remain hopeful during this whole process. We just can't seem to make a ton of progress on Levi's more major issues. The Doctors remain hopeful that he will just grow out of it all. That is not what you want to hear as a parent. You go to specialist looking for solutions. The truth is these are complicated issues Levi has. 

The reflux remains about the same. His last GI visit they decided to increase his medications again. I don't know if we see an improvement. A really good day is Levi not throwing up at all. The worst days now don't seem as bad though so maybe he is making some progress. 

The seizure treatment started about 6 weeks ago now. I don't believe we have seen any large improvement. His medication for this was recently also increased with no luck so far. Levi has woken up the past week straight in the middle of the night having an episode. After wards he just wants to play and it is very exhausting  for us. He still has an episode every morning and after every nap. So here is the new plan of action. We increased his current med and in about one week we will add another med on top of that. We will try that for two weeks. If at that time there is no improvement then we have no choice but to try steroid treatments. This is not the route we wanted to go. These treatments should be very effective but they also come with major side effects. With Levi's history the last thing he needs is more medical problems. The good news is these treatments have proven very effective. The negative is that if the seizures do return after two rounds then we have to stop and we are out of options. This is starting to feel like a hopeless situation. It is not easy to swallow that your child may end up just having to live with this type of condition.

I really hate to give this type of bad report. Believe me there is plenty in Levi's life to be thankful for. The reason I wrote this the way I did is to try and be very transparent about the situation. We are asking for you guys to join us in prayer over the next three weeks as we try this newest treatment. Our prayer is to see Levi respond well and not need steroid treatments. We are praying that the seizures will stop or minimize to a manageable level. 

Levi in the ball pit.

Our friend summer took these for Christmas.