Wednesday, February 23, 2011

Ma-Ma, Ma-Ma!

So for the longest time I'd tell Isaac, sweetie you can 't just yell at me and expect me to come running, you have to yell ma-ma - that's my name, like yours is Isaac. Then he'd just grin because he knew I was already there getting what he wanted anyways. But last week it started. I go to the kitchen for a minute and from the living room I hear, Ma-Ma! Ma-Ma! So I run and he wants me to read him a book (He always wants you to read him a book, 50 books really). Of course I praised him ridiculously for yelling at me. Good move mommy. Yeah now he's been yelling Ma-Ma like there is no tomorrow and normally he just grins like a fiend when I get to him. Like wow this thing works so much better than just yelling.

Its seriously one of the best things ever to hear my little guy talking to me. It feels like he's been here forever, but just now we are starting to communicate with each other & I love it!

Monday, February 7, 2011

Great Weekend - Good Ortho Appointment

So I've calmed down from my last post - and I have to say that my little guy had a great weekend filled with all kinds of family and friends. He played and played and wore himself out playing. He had a lot of energy this weekend.

I just think that as a mom of a kid with PWS I overanalyze every little behavior waiting for the food part to start and I sometimes just freak out - most of the time I'm super positve really - but when you sit back and look at him right now - he's just fine foodwise!

We had an ortho appointment last week with Dr. Willits and found out Isaac wouldn't have to have adjustments every four to six months as first thought. Now he's recommending yearly adjustments (try to wait until the curve progresses 10 degrees, in 6 months Isaac's has progressed only 4 degrees with the device). He said that they have found that really there are only a finite amount of adjustments that work with the device because the muscles won't tolerate more. Its better to limit adjustments. I'm just glad they found this out for us before we were 5 or 6 adjustments in you know? Its weird having your kid be a test subject with this stuff really but we are so thankful for the amazing technology and keep hoping that it advances with us!!! Anyways it lessens our worry about the VEPTR procedures taking over! So that is great news!!!

Wednesday, February 2, 2011

Aggravated . . . Stressed, Discouraged

Back in January we were supposed to have our PW Clinic appointment in Columbus. I called the day before since I hadn't received a reminder letter like I usually get. Well the Clinic was cancelled because the geneticist was unable to be there. Thank god I didn't find this out the next day after driving 3 and a half hours. Anyways they apologized, whatever, so the February clinic is full, and so we had to be put in the March clinic. Much to my protest since my little guy has gained nearly 10 pounds since we have seen them last.

Back in October before the tonsils were out, the doctor said that if my little guy gained just a pound he would get the higher hgh dosage. (He weighed 29 pounds then) So in November when the doctor called to say he could go back on the hgh, I asked can't they up his dosage of hgh based on his weight at the pediatricians office which was like 31 pounds at that time. She said she checked and that still wouldn't be enough for a dosage increase. We are only on .4 mg of somatropin. We have been on .4mg forever, since he was this emaciated little guy, not the big toddler we have now. So when this January stuff happened, I asked again if we could get a dosage increase - and they said not without seeing the doctor. Yeah ok.

To top it off they didn't understand why such and such surgeon did Isaac's tonsillectomy, when such and such other surgeon normally does PWS kids tonsil surgeries. Really, I guess I don't understand either since it was your office that referred us to that surgeon. I don't know I guess that since Dr. Hardin left it feels like this PW Clinic has well, just fallen to crap. The doctors honestly can't answer your questions about PWS because that isn't their specialty they just came over there after she left to fill in for awhile. Someone was supposed to be hired to replace her but its been the same clueless people for almost a year! I am aggravated just thinking about it all. I am really seriously considering switching to possibly Pittsburgh or I don't know at this point going to FL for this amazing Dr. Miller they speak of.

I just feel like Isaac is falling through the cracks of this Clinic that is basically falling apart. We get absolutely no guidance on supplements. It breaks my heart to see all these other PW moms out there getting recommendations of stuff to try and much much higher doses of hgh on smaller kids. (I know you shouldn't compare kids like this, but I just don't understand it, its not like we have done growth hormone deficiency testing or even metabolic testing to know anything more specific to guide the dosage, its simply done according to his height and weight according to this dr.) I guess I am just more or less really scared right now because Isaac has gained a good deal of weight since his surgery last August (10 lbs!) and our calories have went down.

I've called to see if there are any cancellations for February, but patience is not my forte. Dr. Hardin was so proactive, so inspiring. This place now is just depressing.