Minocycline Over

So, Puppy did really well on the medication. No reactions at all. I had to keep a weekly journal for the Dr. and did so. I thought about posting it here, but decided not to. When I went back up to the MIND Institute to reevaluate him after the meds, Dr. H. was impressed by his progress. Although I don't really know if his progress was because he was a month older or if it was the meds. Who knows.......as long as something is happening I should be happy. He became a lot more focused and interactive. He's laughing more, smiling, getting really stong. He's doing crunches, like a sit up and is balancing for a second or two in a sitting up position before falling over. He also rolled over from stomach to back (he was already doing back to stomach) a couple of times....but on this he's stubborn.

Pup also got his first two teeth! The bottom two and I don't think they're discolored which I thought might happen because of the meds.

Halloween was fun. Pup was a skeleton and AJ was Peter Pan. It was fun taking him trick-or-treating for the first time. Everyone thought he was Robin Hood. When one man asked him if he was Robin Hood he said, "No I'm Peter Pan." The man replied, "Oh, Peter Pan!" and AJ said back, "Yeah, whatever you want to call it." He's only 3 and the things that come out of his mouth are hilarious.

His preschool had a fall family festival last week. It was fun seeing him in his element. He introduced us to Teacher Tina, showed us his classroom, and of course....went to play in the kitchen area. He's such a crack up. He has access to so many toys but all he wants to do is pretend to cook and BBQ. DH and I will get him a kitchen or bbq for Christmas. I know he'll love it.

Even though he likes what he likes at school, he is venturing out into new things there. He chose to paint for the first time and is attempting to ride the tricycles they have there although he's still a bit timid. I hung his painting in his room where he wanted to look at it everyday.

Today was election day and I took AJ to the polls with me. He said he was going to vote for Aunt Kelly.

Day 1

Yesterday was Puppy's Second Visit to the Mind institute. New research has indicated that a drug called minocycline may have a positive effect on Fragile X. Dr. Hagerman proposed a 1 month trial with Pup.

Basically Puppy had a clinical visit, then met with the baby Research team, for several eye tracking tests. He also performed the Mullins and Vineland Assessments to give us a baseline of development. Puppy would then take the medication for 4 weeks and repeat the tests.

In the Fragile X Knockout Mice, the positive effects were seen over 8 months later. Side effects could include a graying of his teeth, but it was likely that his adult teeth would not begin to calcify until he was 6 months old, so this was the perfect window of opportunity.

Pup is the 2nd baby to try this. The first is a girl and I've been in contact with her mother who helped me in telling me how to administer the drug so Pup will take it. We talked about our concerns and how we were the first moms ever to have to do this. But we realize that whatever we do is out of love. I was very concerned about the fact that minocycline is not given to infants typically, but I was assured that it could only help. Tonight was the first night of administering the med. I fed him at about 7:00ish and then gave him the medication at around 8. I mixed it with apple juice and a bit of sugar and gave it to him with a medicine dropper. I think he got it in his mouth although there was a bit of spitting out. At least he took it. In fact he kind of lapped it up. Perhaps I made it too sweet! I immediately calle d Holly's mom (the other baby) to find out how she stored the rest of the capsule. We had a nice chat.

As part of the study, I was asked to keep a daily journal, which I will be posting here.

Rolling Over

Puppy rolled over today for the first time totally unassisted!!!!! He's only 2 1/2 months old. That's younger than AJ was. He was about 4 months old when he rolled over. So, that's one milestone achieved.

Today we hosted Fragile X Awareness Day for the family. D and I showed a FRAXA DVD, a powerpoint presentation, and everyone got a binder full of FX info. I felt like such an advocate for Harry. Everyone was so great, too. AJ slept through it but that was better.

AJ is learning how to dive in at swimming. He's also crying less. We've asked his teacher about hiring her privately after the session is over.

Next week Pup is going to the UC Davis MIND Institute to see Dr. Randi Hagerman. I'm excited about meeting her and her staff.

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.