A Victory Amongst New Challenges

     This week Mr. Isaiah has seen his gastroenterologist (GI doctor), his cardiologist, a pediatrician, and a nutritionist. He also had his first visit yesterday from the new occupational therapist. And all that was all in just 2 days. It wasn't easy to juggle all 3 kiddos but we survived this feat. To say that I'm exhausted would be an understatement!

     Let me start by saying that the Dodson Specialty Clinic at Cook Children's is absolutely amazing! I was able to use complimentary valet parking. My kids are 5 months, 2½ years, and 6 years. You can imagine how crazy it is to get them all out of the car and corralled inside of a building. So to pull up to the front door, have someone help me unload my kids, and then park the car... I felt like royalty. Especially when this tired mom came back outside and had help getting them back into the car that was brought to me.  In the waiting areas there are several touch screens with kid-friendly video games as well as TV screens playing cartoons. All at their eye level. The best part was that there was more than one of each and therefore my older ones didn't fight over them. The nurse at the cardiologists gave my older 2 snacks, juice, coloring pages, and their own ziploc baggie of crayons to keep them entertained. They were no longer interested in my "survival kit" I packed, which means it's ready to go for next time. I am willing to bet money that they consulted with frazzled moms that have multiple kids and asked them what would make going to the doctor easier for them. There is no other way this amazing place could be so awesome!

     Back to Isaiah... he had an echocardiogram (ECG) which is a long word for heart ultrasound. The hole in his heart is starting to take on a cone-like shape meaning that the bottom of the hole is smaller than the top. The cardiologist's interpretation is that the hole is trying to close and there is tissue growing to start fusing the hole. Our original cardio... the amazing Dr. King... thought it was starting to close just by listening to him. I asked how often this happens and he told me that babies with Down Syndrome, their holes usually don't close on their own. He said it has happened but it is very rare. But he believes in God and believes in miracles. We were so blessed to be under his care for Isaiah's first few months. 
     
     The GI specialist thinks that the problems he is having with gas (this baby can out stink a room full of teenage boys), constipation, and a distended abdomen after eating is being caused by an allergy to the protein in milk. She has put him on Similac Alimentum (the comparable formula to Enfamil Nutramigen) to see if it helps. This special formula comes with the proteins already broken down. Smells like old mashed potatoes but he seems to like it okay. The nutritionist gave me instructions on how to mix it so that it still meets his needs for a higher calorie formula. Because he will be going through formula faster due to the extra powder in his bottles, we are able to get some through Cook Children's Home Health and it will be covered by his insurance since it's a medical necessity for him. 
     
     His new occupational therapist is very sweet. She has a lot of experience working with kids that have Down Syndrome and she is assigned to most of the kids in the program with it. She told me about some of the other therapies we should start with him soon. She watched him take a bottle and after some observations and asking me some questions, she is fairly certain he is aspirating formula with his bottles. That would definitely explain why he had pneumonia 2 weeks ago without being sick or having any other symptoms. He has now been referred to the rehab center at Cook Children's for a swallow test. They will put some Barium in his bottle and it will show them where the milk is going. They will thicken it with rice cereal until it no longer goes into his lungs. It is a serious issue but an easy adaptation to prevent it, we just need to work out the kinks before he gets sick again.  He will hopefully get in for that test next week. 

     The pediatrician said that he isn't very far behind on milestones and that he still seems to be on the high-functioning side for a baby with Down Syndrome. He got his DTaP vaccine yesterday as well. The doctor wasn't too keen on my decision to do his vaccines one at a time so that if there are issues we know which one caused it. And she definitely wasn't happy that I delayed his vaccinations either. Tried to guilt me into getting him on a "catch up" schedule but I use to be the queen of that game. Don't play my own games on me and expect me to win!

     The tummy troubles and aspirating food is definitely a bump in the road but I will take the task of having to adjust how and what he eats any day over worrying about his little heart!