My Dreams vs. His Vision

Anyone who has a child that is any less than the picture of "perfect health" can tell you how hard it can be at times but yet a gift beyond compare. That is what Sam is. He has taught us so much and I'm sure will continue to do so. Sometimes, well most of the time, I feel so inadequate and unable to help him. One thing that the Lord has told me is that I have to let go of is my dream of him being just like other children. No stares, no health issues,etc...Just a child who will fit in. You know that phrase,"Let go and let God." Maybe my hopes and plans for Sam are way smaller than what He has in store for Him. I know that they are. God has put 2 other women in our small group that have gone through what we are now going through. One woman, Kim, has been such a huge inspiration to me. She is ALWAYS loving on Sam and telling me how beautiful he is. She studies up on things for Sam. Well, her 30 year old son lives with her and has muscular dystrophy. He was diagnosed in early childhood and is progressively getting worse. He is now having trouble swallowing. She will tell you how bitter she had become(there were other circumstances,too) She had nothing to do with God. This past year she and her son moved to NC to be near her daughter who was attending our church. God has since changed her life. I'm not kidding when I say that she literally glows. Her son has so many problems way worse than any Sam has ever faced yet she continually looks out for Sam. It's little things like this that I know that God is telling me that He knows and He cares and Sam is in His control. Lord, help me to replace my vision for Sam's life and see the vision that you have for Him.

Shooting Star

Sam is still working on taking steps. I guess we celebrated a little too soon. Sam seems to have his own timetable. I know he'll walk when he is completely ready. As far as our Doctor visits go, we will be seeing the neurologist next week. They sent us a million papers to fill out on Sam's history. Our pediatrician called yesterday and asked how Sam was doing. I told him that he has been increasingly thirsty,sometimes waking up 2-3 times a night as well as laying down when he's playing with his toys and sweating more. He said that he thinks Sam needs to be put on the growth hormones sooner than April. This may help the symptoms. I still don't understand why he is having such a hard time. It seems like there is definitely something wrong and I don't know if we're getting to the underlying cause. I don't know, maybe the lack of hormone is causing all of these problems. Sam continues to be an amazingly happy child in spite all of this. One of his favorite things to do is wrestle with his Dad and brothers. He laughs nonstop. He thinks that when he puts both his arms out he is shooting them. It is so funny!

Me and My Car

A Few Steps...One Giant Leap

Today, Sam took a couple of steps. His physical therapist brought him a bag of candy and Sam wanted it sooo bad. He just kept crying and we could hardly get him to do anything. Then, Ty (his therapist) asked me to hold the candy while he held Sam. Sam was so upset that he forgot how afraid he was and walked to me like it was nothing. I could not believe it! We couldn't get him to do this again tonight but at least we now know that he can do it. Way to go,Sam! We are so excited! Whoo hoo! Oh, and he also sucked out of a straw. This is not unusual for toddlers, I know, but it is very hard for a child with a cleft to be able to do it. His speech therapist,Ms. Erin will be excited to hear about this. As you can tell, I am excited too. That's why I'm not sleeping right now. Good night!:)

Our Appointment

On Tuesday, Jeff, my Mom and myself went to the appointment with the endocrinologist. He explained to us that Sam's growth hormone levels are undetectable. He said that he could not explain how this has happened but that his pituitary gland is of normal size and that it makes him a candidate for growth hormone. The tricky part is that this is a daily injection until Sam reaches adulthood or until we feel that he should no longer be on it. The doctor told us that since the shots are incredibly expensive almost every insurance company will fight this for a while until they have absolute proof that he is not growing. They have this, thankfully, because Sam has many records of his height and weight throughout the past 2 years. Jeff and I have felt for a long time that there was definitely something wrong with the way that he was growing but found it very difficult to get them to take it seriously. The doctor wants us to start this treatment in April and told us that within 2 years he would be where he should be in size. It's a little scary having to commit to something for so many years,but we will have to seriously consider this. We will be seeing a neurologist in the next week due to the Doctor's concerns with him being delayed with his walking and other things. Please continue praying for Sam. I know God has such a special plan for him no matter how scary the path may be to get there.

Appointment

Today, Jeff and I are going to see Sam's doctor about his test results. The doctor called us last night and asked to have a meeting with both of us. We do know that his hormone levels are pretty low. He said that he would discuss this with us and go over his MRI with us. (This is an MRI that Sam had done quite a while ago.) I'll try to update later tonight. Also, Sam will be seeing the ear doctor tomorrow to recheck his hearing.