Newest Trip to Boston

We spent a VERY long day in Boston today.

The advantages to scheduling all his appointments on one day:
1. Only have to leave the house at 5:30am one day a month
2. Only have to have blood drawn once
3. Only have to endure the horribleness that is Boston drivers once

The disadvantages to scheduling all his appointments on one day:
1. Being at the hospital for 5+ hours
2. Trying to get the kids (whichever ones are with me) to be calm during the very boring appointments
3. Myself having to sit through the appointments (very trying on my nerves)

I imagine there are probably a bunch of other reasons for it, but those are just off the top of my head.  It's torture, plain and simple.  But, i'd rather endure it once then to go back the following week and do it again.

ANYWAY!!!

Today, we had:

7:30 appointment 

8am echo, then EKG

9am appointment with cardiology

10:30 with nutrition

11 appointment with metabolism

Dean weighed 15lbs 3ozs!!!!  We are slowly making progress to the bottom of the growth chart!!!  Proportionally tho, he's at the 15th percentile, which means that he is just tiny. I haven't had any news on the labs (usually takes a day or two before I hear anything) but there was indication that his echo showed slight improvement, which means that his new meds (he is on 8 now, soon to be 9 different meds) are working.

So, good news today! :D

Boston

July's visit to Boston ended up being a very long day.  We got there early, did the labs before the appointment.  I got the lady for height/weight and EKG that I do not like.  She has the bedside manner of something that doesn't have great bedside manner (when i told my story at supper time, i said fruit fly - but I don't know how a fruit fly's bedside manner is, to be honest!).  I just don't like her, I find her rude, but I try to not let it bother me. 

Anyway, it seems as if Dean is not only 14 pounds - he's 14 pounds and 3 ounces! (cheers!!!!)

We saw one of doctors that we don't usually see, which is fine.  He wanted us to try a new medicine.  Earlier this year, they had me fill a prescription and try this medication in clinic.  It can drop blood pressure pretty badly, and that's what happened before.  The doctor had said that he thought that perhaps Dean was not as stable as he is now, that he might tolerate it better now that he's older and weighs more, perhaps they tried too much too soon.  If his blood pressure dropped again, they would leave it at that and let it go, but this medication had shown great things when it came to healing hearts, and hopefully it would make a difference for Dean.

I had with me two of my other three children, and at this point it was 12:30 in the afternoon and they had not eaten lunch.  After they give him the medication, they wouldn't let us leave the office, so I said that i needed to feed the kiddos.  So, we went and got lunch, got back to the clinic, Dean got the medicine, and we waited.

For an hour. In the waiting room.  Luckily, they had Wall-E on the TV in the waiting room for the kiddos to watch, so it wasn't as bad as possible.

They took his blood pressure and it was fine.  I am relieved.  It seems to be something that the doctors really think will work and I hope that it does.  It brings his meds to 8.

At least it doesn't seem to be bothering him.

9 Months!!

We made it to 9 months!!! :D

Today we had an PT appointment as well as the 9 month well-baby appointment.

I think the visits with the therapist are working well.  I definitely feel as she is helping me understand what I can do to help get Dean on track to being where he should be developmentally.  Today we worked on getting him used to putting weight on his legs and lifting his chest off the floor.

The well-baby visit went well as well!! :D  Sometimes I feel like the PCP is the low man on totem pole of doctors (which, she is).  She was happy to know that the PT was coming out to the house (thought we had it sooner then we did) and was a bit concerned that the home nurse's visits were cancelled due to insurance not wanting to pay for them anymore.  We tried to cut back to every other week, but they said that if he was well enough for them to cut back visits, he was well enough for him to not have any visits.

And he's now 14 pounds!!!!!!!

Insurance sucks.

That's it for now!  Off to see the Cardiologists in Boston tomorrow.

Food

Food has (and I have a feeling that it will continue to be) an issue with Dean since he came home. It's been a challenge to get the required amount of calories in him so that he can grow. Now that Mr. PointZeroFourPercentile is old enough to be eating solid foods, it's been a struggle to find foods that 1. He'll eat and 2. That meet the calories that he needs. So, I've been only feeding him solids at dinner time here, so he still gets the majority o his calories from formula. Today was the exception.

The Boston nutritionist told me that it was okay for him to have (lots of fat) yogurt around 9 months. He is 9 months in 5 days, so I bought some GoGurt. I have now discovered what yogurt I SHOULD have bought, but he REALLY likes the GoGurt!!! I mean, REALLY REALLY likes it!

Success!!! :D

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!!!