I haven't had an update for my son Samuel in a really long time. I thought it would be good to share how he is doing. Samuel has completely caught up with major motor skills and fine motor skills. He had a lot of problems jumping at first but now he is jumping everywhere. Samuel's current hurdle is speech. This is due to having a feeding tube down his throat for the first year and also the fact that he was exhausted from breathing with the one normal lung and one lung 1/3 the size. He puked and slept a lot that first year. Samuel recently had a full neurological evaluation. Praise the Lord he is now in the average range for speech. Samuel continues to be in speech therapy, mainly for mom's comfort now. Samuel attended preschool a couple times a week this past year so that he could continue to learn. Soon, Samuel will be attending a pre-kindergarden class all week.
We are feeling now that we are finally on the last hurdle. Last year Samuel had his tonsils out. The big tonsils were hereditary and not related to Samuel's CDH (Congenital Diaphragmatic Hernia). Jasmine had her tonsils out as well. The tonsils were so large that Samuel only had room to swallow food the size of a pea. If we would not cut up food small enough, the food would get stuck and he would puke out his entire meal and then not eat anything. It was typical last year that he would puke at least one meal. Now that his tonsils are out we were hoping that it would be easier to get him to eat. He is still prone to puking, although now it is more a mental thing rather than having enough space in the back of his throat issue. It is heartbreaking to Leyla because she creates meals with such great care to try and get Samuel to eat. If you could pray for Samuel, ask that God would give Samuel the ability to chew and swallow properly so that he can continue to grow. Samuel is 83 percentile in height and 24 percentile in weight. He is a stick. Samuel introduces himself to other boys as "I'm the fastest runner" Whatever food he does eat he burns off because like all boys, Samuel likes to run and climb.
Personally, I am hoping that we are at the end of the financial distress from all the medical bills. Since Samuel has been born we have spent $6000 to $10,000 per year in medical bills (this is our portion after insurance). In addition to all that Samuel went through, Leyla's body was wrecked by the pregnancy. She had to go to a chiropractor and her thyroid needed to come out because it was over producing. That was an expensive surgery. The speech therapy is not covered by insurance and it was $500/month. I fought with the insurance company for several months to try and get them to pay. Basically, they do not pay because the speech is not affected by the mouth (split tongue, cleft pallet, cleft lip etc). We have a cheaper option now for the speech therapy. We still owe Nationwide Children's hospital around $3000. God willing we are hoping to pay it off this year.
I love all my kids, and I am thankful to God for all of them. However, when I get a hug from my son, it puts me in remembrance of how thankful I am to have him. Samuel could have be in heaven now instead of having him be a blessing to us. He is full of personality, like most boys cracking jokes with potty humor. He loves remote control cars and trucks. He also likes airplanes and helicopters. I bought him a blue tricycle this summer and that boy rides that thing everywhere. I thank all of you for your prayers and your love.