Shouldn't they be paying us?

So going to the Dr or having RN's and OT's ect. in the home has been an interesting experience. Most of the time we as parents are teaching them about our son's rare condition (which is actually more rare than we first were told. The geneticist said there are only 36 cases, and only 4 of them are boys. Maximus will be the 5th.) So I've decided that they should all be paying us! Right? That seems fair. But unfortunately that is not how it works. We didn't learn much from the Geneticist yesterday. We did give consent to starting a medical journal on him for future Dr's and medical research and the good thing about that will be any testing will potentially be free based on the fact that it's for research. So that's cool! In other good news, the missing mosaic gene did not come from I or Tony. Which we pretty much knew but confirmation from the geneticist was good. It's just a random missing link. I still think it's awesome that Maximus made it here. I'm so glad his mutation started just after conception (within days apparently) because if it hadn't I would have miscarried at some point in the pregnancy.

Kids On The Move also came today to see if Maximus qualifies for the program. And he does of course! Usually it takes 45 days from the first visit to get approved, well they approved me on the spot. (I'm sure the fact that he has a rare condition had NOTHING to do with it) They basically told me they want him, they want to learn from him and want to teach me how to keep him on track! It made me feel good, but at the same time I'm thinking my son is NOT a science experiment! But I'm happy to get the word out and educate people on Goltz. Kids On The Move were very impressed with me (not bragging), I am a very organized person. I have a 3 inch binder full of all the paper work we have received and continue to receive so I have all the information for all the different Dr's and programs and people that are interested. It's organized with a calendar and dividers for each specific Dr and things to make it easier mostly on me. They loved that! They were also worried about my well being but were also impressed at how well I was handling it. I guess I just feel like I have a pretty normal baby! He is doing so good so far and just has a few milestones to get over. So why stress about it? Why treat him different when he's not? I just know that I have to be the best for him and getting depressed or letting things get in the way is not going to help him stay on track or get better. They were also impressed with Maximus, he is pretty average in most areas. Just going to work on motor skills, strengthening his neck muscles, his jaw muscles, and his eye coordination. They will come back on the 28th to make some goals for him and for me, things to work on with him everyday. I'm pretty excited about being a part of their group. Also there are support groups that they have too and I am exited to meet other moms that have gone through or are going through similar things.

We go to our pediatrician again tomorrow to see what Max weighs. I'm hoping close to 9 lbs! He seems like he is bigger and gaining weight! So I'm praying for it. I'll let you know what happens.

Last night, Maximus found his thumb! Little stinker. It was cute though (pic below) also we heard a cute little laugh last night when I was doing patty cake with him. I tried to get it on video but by the time I got Tony to come record it for me he was done laughing. I did get a few more smiles out of him though. (video).

This is him doing tummy time sucking on his binki sideways and his thumb is in the hole of the binki. 

Me and him hanging out last night watching The Bachelor

"I found my thumb!"

"Yum!"