Thursday update...

We had a couple of important appointments at the beginning of the week for Max. On Monday afternoon we went to Parents Helping Parents for a tour of the facilities. PHP is a community center of sorts for families with children who have disabilities/special needs. They have an education department, who give support to parents with the IEP process, that's the individualized education plan for special education. They also have a department , iTech, "PHP's iTECH Center is a preview and demonstration center for Assistive Technology (AT)".

As soon as we went in the room and the director started pulling out the different switches and devices, Max lit right up! It was like he was saying, "Hey! I know this!!!". It was just us and one other mom, the rest on the tour were students working on projects. They all got a kick out of Max using the devices. I can't wait to go back for a proper look at everything and to try out different tools.

At the end of the tour the other mom in the group stopped to talk a bit with me. I asked about her child's diagnosis, and she broke down in tears. Her daughter had lived her first two months in the NICU, she had just got to go home, but they are back at the hospital every day for specialists appointments. She doesn't understand why this is happening to them, what did they do in their lives to deserve this? Needless to say we had a lot to talk about, and to share. We were there another 2 1/2 hours just talking, and trying to give hope to a new mom who feels very hopeless. It also turns out that her husband works at the same company Steve does, and has moved here in order to be closer to doctors, and doesn't sit with his team(just like Steve). It was just one of those "not and accident" moments that made us feel very much like we were where we needed to be. I've since spoken with her through email multiple times, and hopefully we will keep in touch.

The next day we had Max's pediatrician appointment. Since I knew we were moving here I've been researching peds in the area, and finally went through every single one on our insurance's webpage and googled them to find info on them. We chose the one who just finished up her training at Stanford's Children's hospital last year. We knew that she would be the best option for getting things coordinated there. For Max, when he gets sick, it's the metabolic doctors that do most of the treatment, but follow-ups would happen with the pediatrician, and prescriptions and medical necessity letters would come through her as well. We really liked her. She was bright and mentioned to us all of the places I have already set up resource wise. So we found a good match! He does have to go back soon to get some vaccines updated, but we're waiting to hear from Denver on whether or not he can have those specific vaccines.

Today I've worked on getting his formula ordered for here. I finally hounded insurance to see if they would pay for it. They do cover it 100%, for inherited metabolic diseases, BINGO! Now we are coordinating between Denver and Stanford on which office will write the prescription and send it in to the formula provider.

I also have to get a fax over to the OT, PT, and Speech clinic at Stanford to try to get Max in there. I was wishing I could find someone closer than in Palo Alto, which isn't too terribly far away, just not in the same city we live in. And I can't imagine driving there 3-4 times a week for therapy. I may try to contact some of the therapy centers by cold calling them. Not something I particularly like doing! I have to have a script before I call or I'm just all over the place the first couple of minutes! Oh well, we've got the prescription, so we can go where we want now.

This evening I am going to try to get all of the papers I have strung from my chair to the kitchen for Max organized. At least in some sort of order. It's driving me bonkers! Oh and we need to go to the store to get Max's prescriptions picked up. They prescribe fluoride tablets here because they don't have fluoride in the water. Weird huh? I guess it's not weird if you're used to not having to take fluoride supplements, but I have always lived where they have fluoride in the water.

Here are a couple of pictures from Max this afternoon. The quilt he is laying on is another gift quilt. It was made by BInky Patrol, another group that makes blankies for kids who are in need of comfort! While we were at PHP talking to the new mom the other day, Max decided he would take a nap...for the first time in a month. So the director took out a quilt for him to lay on the floor with, and we got to bring it home. I tell you, if you are a quilter, sewer, crocheter or knitter, this organization and Project Linus could use your skills. Check out their websites to see how you can get involved.

You can see, he is resting again, but this time it was short lived. Only about a 5 minute snooze, just long enough for a picture!


Olive on the other hand has been there in the same spot for hours!

And here he is sitting up on his own. He'll scoot off of his bean bag chair and practice sitting up for a few minutes before he leans over, and we put him back up on his chair and he does it all over again. He's also listening to opera here, singing along.

You can tell he's working hard by his little neck muscles. It really takes an effort for him to hold his head up straight!