Physical Therapist

Today the therapist came to the house to check Dean out. We talked while she did her stuff, and she noticed that in addition to Dean not using his left hand and foot as well as his right, he rolls over his left arm but not his right. So, we are to keep him blocked from rolling over his left arm and help him roll over his right for a bit each day as well as get him to sit up (with help, of course!).

I think it went well. I think Dean will like her just fine, he seemed to be warming up to her nicely by the time she left. I just need to figure out when would be a good time for her to come by every week.

The Boston people tweaked his formula after the last visit. I'm hoping that they will see the difference that they're hoping to see.

Not much else going on at the moment. I think I'm okay with that.

Weight charts and Boston trip

The docs in Boston plot Dean's weight on the WHO growth charts. Last night, I was looking through the most recent write up I have from some of the docs in Boston and saw percentiles for Dean's weight. On May 9th, he was 12lbs 3.4 ounces which put him in the .04 percentile.

He's now just over 13lbs (13lbs 3ozs). He does appear to be gaining weight on "his own curve" which is good because there was a period of 6 weeks or so when he wasn't gaining any weight.

I just found this a bit crazy.

We were in Boston yesterday for a very long day of visits. I took my 4 year old with me and that didn't go as badly as I thought it might. She was rather well behaved; she only wanted to show off a few times (thanks to my kindle fire, netflix and free hospital wifi!!!).

They are generally pleased with Dean's progress. As stated above, he is growing on his own little curve (which, for the most part, parallels the normal growth curve) but he is growing. They aren't sure that he is small because he has Barth's or just because he is small (older sister was in the 1st percentile for weight when she was younger).

Ive had the home nutritionist come out three times now. Each time I thought that she was useless, each time was just a waste of time for the both of us. I think I might just tell her to not come next time. She told me that I should blend my own baby food because it tastes better (and he'd like it more) than store bought baby food. I cringed at that. I don't know if Dean will have dietary restrictions due to his heart condition. So I told her: "I'm not sure how to go about deciding what to blend" and she went on about how I could do just about anything- fruit in water or fruit juice (no corn syrup) or vegetables- no sodium added. I got the vibe that it should have been a no brainier...but it isn't!! Nothing about this child is like the other three!! So, I brought this conversation up to the nutritionist in Boston. She told me that blending my own baby food was ridiculous. She said I had enough to do and she relieved me of that suggestion and said that store bought baby food was fine. Barth babies just don't really want to eat, and Dean is going through an independent phase (I now have to trick him to eat purées, he eats those Gerber puffs wit such enthusiasm tho! I LOVE those!) and that he was doing well. She said that there usually isn't diet restrictions on Barth babies, but that I will need to add fat whenever I can. We had to do this with Regan as well when she was 2: no margarine, have to make his food with butter. Not just crackers-crackers with butter. And cheese, cheese is good. She suggested I start (high fat) yogurt in the next month. Nothing with chunks. Babies are picky, don't like chunks.

I will write more later, I think. That was the big part of the Boston day. The only other significant event was the lack of abnormal stress when he got his blood drawn. That was nice. :)

Eating and bath time!! :)

It's such a pain to get Dean to eat very much. But, he does enjoy playing with his food, so I'll take that, I guess.

Such a messy boy!!!

He started blowing raspberries.
I knew that  he was done!

Best part of eating?!  Taking a bath
and getting all cleaned up!

And CLEAN!!!

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).

Weight Gain

It's been rough this last month with Deans weight. The last two weeks, the home nurse has come and he hasn't gained any weight. Today, he's up 4ozs since last Tuesday!! I am so happy! I hope that this continues and that Dean might not need a feeding tube. :)