Tuesday, March 24, 2009

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!

Friday, March 20, 2009

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!

Thursday, March 12, 2009

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?

Tuesday, March 10, 2009

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.

Friday, March 6, 2009

I am incapable of dealing with people!!!

So my husband and I went to see a piece of property with a realtor Wednesday. God love her, she was probably mid-60's, heavy smoker, big hair wearing nice enough lady. But for the love of God, did she have to go on and on about how small my baby was, and what I needed to do to fatten him up? Then she proceeded to tell me, do you know he has a lazy eye? Then she told me how to fix it. I guess she was just trying to help me with her experience, but OH MY it was hard to be sweet and just ignore it all after awhile. I tried changing the subject several times. I had him in his little Peanut Shell or she probably would have commented on how floppy he is and how I could fix that. I got so aggravated, I wasn't even interested in the property. The experience soured me on it.

Its hard to listen to people who look at your child for 15 seconds and tell you how it is. When all you really want to say is, yeah, um we've noticed these things and are working on them. WE ARE NOT BLIND. We do not starve him, I promise. The lazy eye doesn't concern me ma'am not nearly as much as the hole in his stomach we feed him through, or the fact that he can't hold his head up at nearly 8 months, or the scary food and behavior issues I'll get to see in the future. But I guess it just makes you feel better to share your wisdom - but please God - just never again to me.

Thursday, March 5, 2009

Growth Hormone may be sooner than we think

We have a follow up in April with Dr. Hardin's office in Columbus. We understood that would be when we learned how to administer the HgH. I got a call from Dr. Hardin's nurse that they are sending out a starter packet with it directly to us and that we would learn how to administer it from a nurse here in our area! I'm excited, but scared too. I hope that my husband and I can get good at giving nightly shots. He will be 8 months old on March 17th. I hope we get it before then.