Doctors, Doctors, and more Doctors

Between the three of us we have at least 2 doctors appointments a week, plus Graham's three therapy sessions. Can I just say that I am sooo thankful for health insurance?! Last week Graham saw the neurosurgeon for a check-up and had a modified barium swallow study. This week he saw the neurologist and the ophthalmologist.

Matt and my mom took Graham to the neurosurgeon and for the swallow study. Too much walking for me to go to Duke for the neurosurgeon and the swallow study was basically dying Graham's food and watching him eat on x-ray which I couldn't be present for since I am pregnant. Mom drove and Matt and Graham met with the doctors.

Neurosurgeon:
There weren't any concerns from the neurosurgeon. She wants another MRI in March to make sure that everything is still working properly in Graham's neck. She mentioned that she wasn't surprised that Graham was in feeding therapy because children with stenosis in the neck often need that. Well, thanks for the heads up on that, lady! Apparently most of Graham's lingering issues (physical development delays, speech delays, eating issues) all stem from the stenosis in his neck. Too bad the pediatrician didn't know that when he made me feel like a terrible mom because I haven't overcome Graham's behavioral issues and forced him to eat table foods.

Feeding Specialist:
Graham saw the feeding specialist on Friday to get the results from the swallow study. My prayer was that there wouldn't be any physical abnormalities that would require surgery and that Graham would be agreeable for the appointment. Well those prayers were answered but we got some news I was not prepared for. Apparently when Graham tips his head back to drink from his sippy cup he just lets the milk run down his throat instead of gathering it in his mouth and then swallowing. This puts him at risk for aspiration. So we are supposed to thicken his fluids and start working to transition him to an open cup which will promote a better swallow technique. A 2 year old with an open cup... my entire house is going to smell like sour milk.

But the big doozy is that she wants him to go back to an all pureed food diet. Graham is not chewing correctly. He still tries to mash food with his tongue against the top of his mouth like a baby, even though he has all of his teeth. So he is swallowing large chunks of food which puts him at risk of choking and also doesn't allow his body to fully digest his food and get all the nutrition from his food. So at age 2, Graham is eating only pureed foods. This is both for safety reasons and so that we can start from scratch to reteach him how to chew and swallow foods. We started on Friday and it has been a battle figuring out how to puree foods and how to get Graham to eat it. Crying, lots of crying, and little eating. So far pureed mac and cheese and chocolate pudding are the only sure wins. Graham will go to feeding therapy once a week.

I may have shed a few tears when I heard that Graham had to go back to pureed foods. He is a very picky eater and most of his favorite foods are solid crunchy foods. We get him interested in food by letting him take a bit of a big piece or eat with a fork. What about trying to get him to eat what we eat. I can no longer offer him food from my plate. I'm on bed rest, and now somebody has to puree all of his meals. I guess nobody in this house gets to eat crackers or chips anymore. How can we eat them when he can't have them? Graham is not growing and I am desperate for him to eat and this is not going to be easy. Please pray that Graham will eat and that we will have wisdom and patience with him.

Neurologist:
We took Graham to the neurologist 6 weeks ago to see if she would have any answers about his nystagmus (bouncy eyes) or eating issues. She wanted to see his most recent MRI and scheduled another appointment for yesterday. Guess what... Duke still hadn't sent over his MRI. Sigh. But this time she mentioned some concerns that she didn't mention last time. She noticed something about his back and wants to do an x-ray to see his spine better because she thinks he may have scoliosis. She also pointed out that the top part of his arms is shorter than the bottom and that he could have some kind of condition that prevents him from growing, not just his lack of eating. She wants him to see Duke genetics but they are booked up through September of next year. She wants to see if he has any kind of chromosomal/genetic issue/syndrome that ties together all of his health issues. She says that if he does have something that can be identified then it would give us a heads up on other health issues he may face going forward. So we have to take Graham for a back x-ray and to have blood taken for some kind of brand band genetics testing.

Ophthalmologist:
Graham continues to see the eye doctor every 6 months. She doesn't have any answers for the nystagmus but wants to continue to monitor his eye sight and eye health since he has the nystagmus. She didn't have any concerns today! Praise the Lord.

Conclusion:
Our family obviously has a lot going on and the stress level is through the roof. I know that there are many people with children with much more serious health issues or handicaps but in a lot of cases those families know from day one that their child will never live the normal life they had dreamed of. With Graham, I am still holding on to the possibility that he will live a fairly normal life and with each doctors appointment and diagnosis I feel that slowly slipping away and that is very difficult.

We are grateful for the support and help from family and friends. We long for a day when our family is functioning normally and we can again serve others. Our 4 big prayer requests are (1) that Graham will eat and gain weight (2) that the twins will stay in the womb a few more weeks (I am 33 weeks) (3) that Matt's seizures will get under control with medicine so he can drive again (4) that we will seek the Lord and rely on Him for the grace we need during this season. Thank you for your continued prayers. We are so humbled.