9 month Pedi Appt

So our little man weighs 15 lbs 4 oz. Not on the charts yet, but we are still moving up. We haven't lost any weight yet, so that's a good thing. Since the GH started he has done so well. He is moving around so much and getting stronger. It is AMAZING.

He is starting to kissy face us all the time. Like he's kissing at us. I'll have to record it to share. Its about the cutest thing I've ever seen. :) Oh and he loves loves loves bubbles. Its starting to get really fun!

Helpful Support Websites and Blogs

I am constantly searching the internet for other stories of children with PWS out there. I love following Hope's story as told by her mom who is an amazing advocate for her Hope and for PWS in general.

http://holdinghopechasinggrace.wordpress.com


I just found this site. I really like the stories page. The info is very helpful and I wish I would have seen this when we first got our diagnosis.

http://www.pwsnotes.org/Main_Page

EEK - the feeding tube came out!

Ever since it was put in my husband and I have lived in FEAR that Isaac would pull out his mic-key button- even going to the ER last Thanksgiving because we thought it was out (it wasn't) - Isaac's tube finally came out.
I was trying to do an exercise on a ball that the PT showed me and his gauze on his tube got caught and pulled it out. He didn't even pull it out, the good little boy. It was my fault. Surprisingly he was grinning because I was trying to get him to bear weight on his feet & my husband and I were all up in his face. My husband said he thought he was peeing, but nope a bunch of milk was going everywhere.
It was not as bad as I thought it was going to be to put it back in. I had seen the doctor do it many times before, but I just thought we wouldn't be able to do it right on our own. I ran around and found the syringe, which I had buried in a bag in my bedroom closet (yeah I know it doesn't make a lot of sense) and held his hands while my husband calmly put it back in. Isaac didn't seem to mind one bit. Craziness. What an interesting life we lead :)

We started the HgH - 8 months and 5 days old

So I gave Isaac his first shot on Saturday! He did ok. He squealed yesterday, which worries me that he's starting to figure out that I'm poking him with a needle. Right now our dose is half of one mini-quik so we have to use 2 syringes and its such a pain. I can't wait until we can just use the one needle and be done with it. Right now I worry about measuring it right and getting air in it. It is easier than I thought it would be though.

I'm very excited that we finally have it. Isaac weighs a little more than 14 lbs and I need to measure his length now that I think about it! :) I'll update with progress!!! I like the idea of PROGRESS!

Then and Now

This first picture here is of Isaac when we brought him home from the hospital. He was so tiny that my husband and I could not believe that after all he'd been through (nearly a month in the NICU), and still not knowing what was "wrong" with him, they were letting us take him with us, away from all of the monitors and machines, away from all of the medical professionals. We thought he was so fragile, so sensitive. We would treat him so delicately. We handled him gingerly to say the least. I remember it would take me an hour and a half to sponge bathe him to make sure that he was warm enough, to make sure I didn't get any water in his ears, to make sure that everything was . . . ok. I remember feeding him a bottle of breast milk would take an hour or more. I remember when I pumped 7 and 8 times a day!!! I remember that it felt like a constant cycle of feeding, pumping, changing, sleeping. It is so hard to imagine that that is what it was like, THEN.

I cannot even believe how things are NOW. My baby turned 8 months old on St. Patrick's Day. I told my husband that it feels like these days, Isaac is really waking up. It was as if he were sleeping through the first six months, and now he is changing so fast and doing new things daily. I know that every new mom says that things go by so fast, but it was not so in our case. The first six months were so long, so crazy. Everything was in slow motion. Now he is pushing 14 lbs and he's grown to 26 inches (from 19 1/2). He is laughing and smiling at you. I feel like he actually knows who I am now (at least I like to think so). I only pump 5 times a day, which is an amazing difference! He is making little sounds. He can roll over on his side. He holds his head up somewhat. He eats his bottles much more efficiently. We don't have to use the g-tube nearly as much. He is definitely making progress. We see it and it gives us hope.

I think it has been so hard to you see my baby struggling and having trouble doing simple things, things that come naturally to most. My husband would say to me when we were overwhelmed, Angie, I'm sorry it has to be so hard. It has been hard, but the struggle makes everything seem so much more precious. It has made us much more appreciative of the little things. I cry at milestones. I swear when he sits up one day I might go through a whole box of kleenex. God help me when he walks. I seriously can't imagine my life without him.

Now on my bad days, I can get lost in the scary scary place that is the PW future - where no one can predict how life will be, no doctor can really say how things will turn out. It is a very overwhelming place and I seriously have to block it out of my head in order to function. Back THEN, those days were more often than not. But those days are getting fewer and far between. Isaac is 8 months old and I'm sooooooo excited about it NOW!!! Well that and he is starting to look a little bit more like me I think!

Psych evals for an 8 month old

So I have to get TWO psych evaluations for my 8 month old. Not one, but two. Why you ask? Well because the two programs I am applying for (CDCSP and MR/DD Waiver) require psych evals, but of course they require you to use one from their list of approved psychologists, and there is no overlapping one for both programs. Good times! I love taking off work twice for this craziness! I mean really, I was a psych major, what on earth can you do with an 8 month old people?

Prader Willi Support Group

We are trying to start a PWSA chapter in WV! Our first meeting to see who is interested is April 19th at 2 pm at the Charleston Public Library.