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.

Shake, Babble and Roll

My two are wild these days - Isaac and Lucy chatter to each other all day long. If only I knew a little of what they were saying . . . They love to watch Barney and dance. The both get on the little trampoline together and move all over. Its a wild wild house. I absolutely love it right now. It is so fun.

I really hope his speech takes off. He is doing so much better with repeat syllables - moo moo, ma ma, da da, etc on command. He babbles in a zillion syllables with his sister, but when you want him to repeat a sound for the longest time you only got ma or da or whatever. Now I'm getting neigh neigh and so on.

A few more pictures of the birthday girl . . .

A year ago :)

My Lucy is 1 year old!

We had a little owl - Look Whoo's one birthday for the little one - She was so adorable. She really enjoyed every minute of it - especially all the people around to visit her. I tried to lighten up the fare this time around and make sure there were plenty of healthy options. But of course there were cupcakes. :)

She is doing so much right now its amazing (and terrifying) but I am so happy to have her in our lives. Her big brother absolutely loves her (when he's not pinching her) and has to have her near at all times. His Lucy sign is probably his most frequent especially when he's tired or wanting to get into trouble.

Happy Birthday to my beautiful little girl!

Speech Therapy and the Monster at the end of this book

So Grover's Monster at the end of this book for ipad is a HUGE hit! We've read this book to him since he was little - but there is something about having Grover tell the story makes my kids go nuts! They love this app for ipad. It is adorable. :)

Per Isaac's speech therapist's recommendation (and with her help), I programmed a storyboard on icommunicate with words like cow - with two sounds for the word - like moo moo, in order to encourage Isaac to make two syllables at a time. We talked about apraxia a lot and how in order to help with sequencing its good to encourage two of the same sounds at first and that will hopefully lead to two different syllable sounds later on. Wow I'm not very articulate at explaining that. Anyways, I have storyboards now with train - choo choo, clown - ha ha, owl - hoot hoot and so on. I also am making story boards with simple sounding words of the p, b, m variety. So pot, potty, pool, pop etc. just to encourage specifically the p sound. Its just like flashcards with my voice saying "pop pop pop" etc. I'm really excited because it sounds like a great way to encourage speech that we haven't really focused on. I mean we do flashcards all the time but this seems more . . . concentrated? Anyways I'm excited.

Christmas fun abounds - My two were really getting into this present thing . . .

Christmas with Eric's Family

Christmas with my Family

Christmas with our own little Family

Christmas Morning Craziness

Too busy to be bothered by a mom with her camera

Isaac & Lucy really got into Christmas this year & it was an absolute blast!!! At the rate these 2 kid's Christmases are going they'll be asking for Pink Porsche's and Space Shuttles by age 10.

Oh the pain mom . . .

So Isaac squished his fingers in a drawer this morning, so I ran over and grabbed him and kissed his fingers - saying oh mommy will kiss it and make it all better. He thought that was pretty hysterical I guess so now he's "hurting himself" all over the place and running over with his fingers for me to kiss and make feel better. Its so stinking cute.
Ah, if only a kiss fixed everything else this quickly. :)