Meds

Dean was prescribed yet another medication. This one is an amino acid supplement. Supposedly it should help his heart function by raising the amino acids that he is deficient in.

This brings his meds list to 6. He takes all 6 in the morning, 3 in the afternoon, and 4 at night. And I know what most of them do. It's hard to keep track, and a couple have the same function.

I'm exhausted. Jim has been gone this week and it's been busy. Tomorrow we go back to Boston for echo and cardiologist appointment.

Edit:  My phone likes to auto correct Dean's name to Sean.  I have tried to figure out how to adjust the settings so that it won't do that, but I fail.  I promise that I didn't rename him! :D

Foods

So Dean has had apples, green beans and prunes (prunes were Regan's favorite). So far, it's been quite a struggle. He screamed with the first few feedings. I mean.. SCREAMED.. It was awful.

Tonight I tried the prunes. He didnt scream. He would let the food pool in his mouth, then spit it out. I would put the food back in and it would repeat. I tried placing the spoon on his tongue to get him to swallow and he would choke. I have a feeling that eating will be quite a struggle for us.

He got messier with the prunes...he is such a sweet boy. :)

First Foods

Was finally given the green light to start Dean on puréed foods. Last night I tried to give him some rice cereal with formula. He wasn't happy. I was a bit bummed, but I read that babies with Barth have been know to have issues with food and feeding, and texture can play a huge role so I'm trying not to stress about it. A link to the article I was reading

So, since I was told that purées are a go (this is all very limited, he needs to eat this in addition to all his formula), we got him three different baby foods to try: carrots, peas, and apples. Last I read they still recommend giving vegetables first.

I tried him with the peas at lunch time. He did better with them then he did the cereal. He didn't do great, but he didn't act like I was trying to poison him.

Yesterday, i got a phone call from Leah, the metabolism nurse practitioner. We had questions for Dean's main cardiologist.

Question 1 was about the solid foods. We got the green light on the purées.

Question 2 was about Dean being banned from live vaccines. The issue when he was born was that there was a blip on his newborn screening that indicated an immune issue and that was what initially gave them reason to ban live vaccines. They plan on waiting until one year and then they will revisit it. The only live vaccine that he has missed was the rotavirus one. The MMR and Varicella are both live and both at a year.

Question 3 was about the supplements that metabolism wanted to give Dean. The cardiologist said that it was okay, so they are just waiting for labs to come back to make sure that he's okay to start them.

We saw both metabolism and cardiology this week. We got all labs done, which was nice because they have been having problems drawing his blood. No Echo this week, will have another one in 2 weeks.

We also saw the intake lady for the OT/PT and perhaps a speech therapist. It seems likely that Dean will get those services, which is nice. They'll come up with a plan and perhaps give us ways to get him up to developmental age. Depending on how he takes to food, he might need help with eating and swallowing, so they (along with the nutritionist that comes) will help us with that if needed.

I think that makes me up to date (with the exception of the facebook posts...was having issues downloading my FB profile).