Firsts

Puppy has just started smiling! Unfortunately, today he has come down with his first cold. He's a little warm and is sneezing. Poor baby. We saw the pediatric specialist yesterday and he was awesome. He was so nice and actually knew all about FXS. This was such a relief. It was a little sad, though, because he noticed some of the little physical features Pup has related to FX. In my heart I felt maybe there was a chance it could be a false diagnosis. Now it's confirmed. His advice was for now just to love him and treat him like any other baby. We also finally had our first IFSP meeting yesterday. Puppy will start therapy this week. Our first appointment is on Friday to fill out some paperwork.

AJ will not stop crying during swim lessons. He keeps asking for mommy and daddy! At least he's not being disrespectful. And although he's crying, he's still swimming and doing well! He's been dong a lot of planting at Grandma's house. He enjoys this.

At last!

Today, our service coordinator called. Puppy has finally (after a month of waiting) been found to be eligible for services. We have an meeting on Monday morning to talk about his goals and hopefully therapy will begin soon after. He's starting to smile and it just melts my heart. I'm just dying inside because at some point his delays will become noticeable and all of this will be real. At 2 months of age you can't tell. He looks normal, he's acting normal, and sometimes I think to myself that the test was wrong. What if he was misdiagnosed? I know it's not true but my heart wishes it so.

Today my mom and I took the boys to the park. AJ refused to go into the water fountains and wanted to lay on the blanket. His shyness is really bothering me, but I guess if he's content I shouldn't worry. His swimming is coming along although he's been giving his swimming teacher a hard time.

MIND Institute

So, the UC Davis MIND Institute called today! They want to see Pup next month and make him part of their baby study. I'm thrilled to be seeing Dr. Hagerman, one of the renowned doctors in Fragile X research. I'm a little worried because it's possible that AJ could be a premutation carrier. They want me to have him tested. I thought for sure he was spared.

Yesterday was J's baby shower. We had a great time and AJ's swimming is really coming along. Of course, today at swimming lessons he wasn't as brave. At least I know he can do it.

Thrilled!

I'm thrilled about the July 7 Time Magazine. There's an article all about Fragile X Syndrome. Never before had I ever even heard of it. Now, it's in a national magazine. It couldn't just be coincidental. I don't believe in that. Now, maybe if people ask me what Puppy has they'll recall the article they happen to see in Time Magazine when I tell them. At least there may be some awareness. I feel like it's this orphan disease....all alone out there.

Anyway, it's been a good week. We spent the 4th at Pop Pop and Mimi's. AJ swam with his uncles. DH didn't come. He's still not quite ready to socialize. I'm hoping he'll get over that soon. We have his brother's and my sister's baby shower this weekend. He needs to be cheery.