Day at the Movies

Today I saw fragile x for the first time. I attended a Family Fun Day for the So Cal Fragile X Association. We went to a free showing of Hotel for Dogs. It was hard, but at the same time, not. When I considered going I was scared, because besides Pup, I haven't ever met anyone with fragile x. With Pup I really can't tell yet, so I was worried about what I would see, how it would look, what the behaviors would be like.....I didn't know if I was ready for the reality of what fragile x is really like. I'm so glad I went.

It was hard "seeing" what it meant to have fragile x, but there were so many degrees of severity. I realize now that so many times I've probably seen people with fragile x and didn't realize that's what it was. It's funny how they are all so different, yet somehow all very similar. Some of the kids were hilarious. When I got home my husband asked how it was. I told him it was hard but wonderful at the same time. He can handle the various behaviors, etc, but his biggest worry are the tantrums we hear so much about. He's a man who loves going to restaurants, etc, and worries his life is going to drastically change. (Well....I told him to get ready cause it is!) He asked if any of the kids had any. There was one boy in front of me who was having a hard time. When I told him, yes, that there was one, he looked sad. But what was so amazing to me, and what I told him, was how no one bothered to even look. It was just so matter of fact. I loved that. I also told him that out of the entire room, there was only one tantrum and the rest of the group were laughing and enjoying themselves. When the movie was over, one boy stood up and shouted, "Movie dismissed!" It was so sweet. My husband looked so relieved. I reminded him that our "normal" kid has more tantrums than we can count. I guess what's scary to him (and me, too) is that the terrible 2s/3s seem to just last a little longer. No matter how they were, however, it was obvious that they were all so loved by their family members around them.

I met so many wonderful parents who are envious that I know so early. I am lucky to have the knowledge about my little guy. I know for many parents the hardest part is just getting a diagnosis. I will never have that worry, and for that I feel blessed. And I also wonder if how he is as a baby has any indication for how he'll be later. Who knows? I know he is going to be who he is and I will love him unconditionally. I hate myself sometimes for harping on it.

How Cute

I know he's memorized it, but it's just so sweet.

Confused

Ok...now I'm confused. I took Pup to the doc today because last night he had a horrible croupy like cough. The doc said we should for sure postpone the tubes on Thursday. I agree. Then he said he couldn't believe we were even getting them because Pup had never had an ear infection. This doc is a regular pediatrician and our older son's doc. He's not the pediatrician we normally take Pup too. He said we should wait out the winter. That tubes with no ear infections seemed pretty aggressive. He doesn't have experience with FX so I don't know what to think. I will email his dev. ped. tonight and see what kind of a response I get. THe ENT wanted to do it right away. The ped., however, said that ENTs are surgeons and generally like to cut. What should I do?

Can't EAT!

Pup will not be able to eat at all from midnight until his tubes are put in at 9 am the next day. That will be a struggle considering he still nurses at night. I made the appt. for next Thursday! He'll get his tubes and hopefully his hearing back. Also, his PT will start on Monday! I'm so thrilled.

TUBES

"You know....with Fragile X comes mental retardation. . . . But I wouldn't even know he had anything. He's not a funny looking kid."

This is the first thing the ENT said to me when we saw her today. Put a knife in my heart while you're at it. Sometimes the best scientists just don't make the best doctors. Because of that, she didn't want to delay in putting tubes in Pup's ears. "He's already at such a high risk of developmental problems we shouldn't wait." As much as I was all for her get to it attitude, she could've spared me a ride on the Straight Talk Express. Sometimes a little kindness goes a long way. At least she knew what fragile x was. For that I was grateful. It was just a reminder that those "Check with your doctor if you are concerned about your child's development" passages in all baby books and baby websites apply to me.

Anyway, Pup will be getting tubes in his ears within the next few weeks. Another hurdle conquered????!

The Day Has Come

Well, the day has come, and because I know my sister reads this I feel ok writing about it because I could not talk about it without crying. I'm starting to see her son (3 months younger than Pup) do things that Pup is not. He's babbling a whole lot and is already sitting up- way earlier than Pup. I know there are ranges in all babies and I shouldn't compare, but it's so hard not to. I know it'll get worse and eventually he'll "out do" my kid. I know his whole life I'll see differences between my child with fragile x syndrome and typically developing kids but as he is only 9 months I wasn't really seeing it yet. The day has arrived where it's happening and although I know he'll get there it just breaks my heart a little because fragile x is real and it is happening. Ok....no more whining or pouting. I know I need to suck it up and just be happy that he's doing as well as he is because I know it could always be worse.

On another note, Baby Hank (my baby nephew) is SOOOOO cute and since he's the first niece or nephew I'm around a lot I can't believe how much I adore him. It makes me a little sad that my niece Darcy is not around more to share the joy of all the cousins being around to play. It's hilarious to see Pup and Hank roll around together on the floor- especially because they are so close in age. Angela, if you are reading.....move closer. Love to all.

ENT

"Roses are red, sugar is sweet, and so are you." This is how AJ said bye to me today. He told me he learned about loving people at preschool. Hugging meant you love someone he explained. He keeps reciting the Roses are red....It's so precious. He also had to make his first set of class V-Day cards for the kids in his class. I thought it would be a nightmare trying to get him to write his name 16 times, but he loved it! He can write the first two letters of his name (which is our nickname for him.) I'm glad he loves school although I wish he was a bit more outgoing. He's VERY reserved and doesn't like to try many new things. He has been learning sign language, too. One of the parents is an interpreter and comes in to teach various signs. He knows some foods and some signs for various commands. It's really cool. Typical male already set in his ways??? When shown the word elephant, hi, and arms, he can "read" them although I know he's just memorized the shapes of the words. Anyway, he's wonderful.


I had to take Pupster to Hearing Conservation again to recheck his ears. He has fluid in both ears now and about a 30% hearing loss. I have an appointment with the ear, nose, throat doc on Tuesday to take the next steps. He'll need tubes most likely. I guess that's the benefit of an early diagnosis. He's never even had an ear infection! When I asked how I would've known he had fluid in his ears if he didn't have FX (the reason the regional center sent me to get his hearing checked- a procedure done for all clients) the audiologist told me that he most likely would've been speech delayed and the doc would've sent me to rule out a hearing problem. Only then would I have found out that the whole time he could only hear about 70% effectively and that for him it was like having fingers in his ears. Thank goodness for Regional Center. I hope they just put the tubes in. I don't want to wait a long time to "wait and see." Plus, with the horrible economy in CA I am facing education layoffs. I can't lose my insurance! I will try to have anything that needs to be done before that happens....if it happens, which my gut tells me it'll be ok.....

He had a great therapy session today. The infant specialist did some fine motor activities. We are working on pulling pegs out of a board and items out of a bowl. He's sitting up and very close to pushing himself up to sit by himself. He's also on the verge of crawling. He assumes hands and knees, rocks back and forth, and put out one knee. We're still waiting to begin PT which was approved for once a week.

This is a video clip of Pup in his Exersaucer (which I've been told to use only minimally) bouncing around while his big brother makes him laugh. It is hysterical. At least it is to me, but I'm his mom.