Finding New Friends

Today, Michael and I headed to the middle school for Locker Day. Since Michael is entering the school for the first time, the new students get to go in and practice their locker combination, find their classroom, and check out the instruments for band.

After getting his combination and pep talk from the principal, we headed to the fifth grade hallway where Michael attempted his combination. He got it fairly quickly and kept re-doing it, while I stood by and watched in amazement that this child of mine was only three years old yesterday, it seemed. A few lockers down, a girl was working on her combination with her mother and sister nearby. The sister looked to be around 13 or 14 years old and I kept looking at her, thinking, "This girl HAS to have Williams!" I knew there was an older girl in town but I had never met her.

Finally, I thought to myself, "Whatever! I am just going to ask her." I went over to the mother on the side and said, "Can I ask you a question - I hope not to offend you" or something like that, I can't even recall right now. I was hoping she wouldn't mind me asking a personal medical question. "Does your daughter have Williams syndrome?"

She looked at me and said, "Yes." I quickly replied that my son does too - unfortunately he was home with my father-in-law, I said to her when her head whipped around to see him. Her daughter is going into the high school and was very pleasant and polite. She doesn't have any medical issues at all, just a heart murmur that is not serious. The mother said when her daughter was younger she was involved a little with WSA events, but hasn't received a newsletter in years. We spoke for a few minutes before being hurried along to the music room, but since her younger daughter will be in Michael's homeroom, I will be able to get in touch with her again pretty easily.

It's really neat to have this sense of community with complete strangers.

Here is a great post from Joanne, who happens to be Sawyer's grandmother (Sawyer is in the pictures from Sunday, August 10 post.) http://jossoapbox.blogspot.com/

When I heard about this movie, it looked hysterical and I was anxious to see it. I had no idea about the sub context in it. While I have never taken a stance about the word "retard" in my blog before, the points Joanne makes are right on.

Augmentative Communication Clinic

Today we went to the Augmentative Communication program at Children's Hospital. It was very interesting and not at all what I thought it would be. I thought we were going to see Brady tested in Speech and other ways of communication but it was all about equipment that we may use for him. I will get a full detailed report shortly that will be beneficial for the school.

Brady got the idea pretty quickly: there was a video and music on the computer screen and suddenly the music would stop. He realized if he hit the button (envision a "Easy Button" from Staples) it would go back on. It was pretty neat to see him use the computer. She gave me a ton of websites to look at (kneebouncers.com, ilovewavs.com, snagit.com, jing.com, priorywoods.middlesbrough.sch.uk) and ideas on how to put together some programs of my own with Powerpoint, Boardmaker, and SwitchIt Maker 2. The button and other equipment came from Ablenet, Inc (ablenetinc.com). She is planning on having a workshop to help parents like myself work with the computers and kids.

Brady's Education Therapist came with my mom and me, which proves once again how in love I am with his therapists... they are so caring and are so devoted to Brady. She was interested to come and see what the deal was with this clinic, but we had a blast driving in and having lunch. I will miss these guys so much when Brady graduates Early Intervention and moves onto preschool in two months.

I was planning on making my triumphant return to blogging on August 1st, but this past week has for some reason flown by, so here I am on August 10, ready to get back into the groove. While I have been reading and commenting on others' blogs, I have not posted for over a month, as my friends and family have graciously (and not-so-graciously) have reminded me.

Besides going on vacation in July (That's Brady in our Park Home on vacation waiting for me to get him out of bed), I have been trying to gets things in order around my house. It seems there is always so much STUFF that is EVERYWHERE. We have also been trying to keep up with Brady, who has gone with leaps and bounds motor-wise. Here are the top ten things going on with Brady:

1) He is an active crawler, not content to just sit, he moves to toy and toy, crawling all over the place.

2) He is cruising along furniture and walking with his walker FANTASTICALLY! I have the walker in my trunk so he can walk into playgroup on Fridays and walk into his doctor appointments at the hospital now. Sometimes he just stops and looks around, but he usually gets going with a nudge :):)

3) Brady is doing much better eating, although he still does great one week, lousy the next, etc. He is now loving Pop-tarts, chocolate milk, endless graham crackers... and of course, Pepsi! He has YET to hit that 20lb. mark though. Last week he weighed in at 19 lbs 13 oz.

4) He has been able to see his WS friends this summer - we were fortunate and excited to visit Clare and Michaela at their BBQs, along with seeing Coleman for music therapy a few times each month and Lucien for play dates. We also got to meet Arianna and Michelle, which was great. Tom and I are both happy to be so close to such fabulous people. We are enjoying all the time we are spending together. This Fall we're looking forward to more gatherings! (He's in these pictures with Sawyer playing with the blanket at Clare's house.)

5) Brady intermingles with his cousins like one of the gang - they are 1-1/2 years younger that him, but he intermingles with them just the same! It's cool to see them play.

6) We're getting ready to go to an Augmentative Communication program at Children's tomorrow, which is a two-hour clinic that will assess Brady's communication skills and his needs. Apparently I will get a big report that will be great for school that will showcase if he needs any equipment.

7) We also have Brady's first-ever cath this week on Thursday, with a full day of testing on Wednesday. We should have answers on Thursday on when they will do heart surgery.

8) We have two months left before we start preschool. His Early Intervention OT is going to be working at his preschool, so we will have a great transition there - I am so LUCKY this has worked out! We will hopefully get his plan in a month so I can see how many days they recommend.

9) Brady wears soft splints on both hands to keep his thumbs out, and it has really changed his playing abilities, very quickly.

10) He is enjoying time with his 10-year old brother (Michael had a birthday - double digits!!) and getting along with the dog (yes, we still have her... so far!)

I am planning on challenging myself to blog every day in August like I did last October... let's see if I can do it!

My how time changes.... the other night at the baseball game, Mr. Brady wanted nothing but to crawl around on the grass, stand up holding onto the fence, shake, shake, shake it a bit, then crawl down to the other parents....

Is this my same boy??? :)

We had a lovely visit to the dentist this past week. We had gone last month to find Brady had three cavities so we needed to return to have them filled. Because they were not too bad and there were only three, the dentist decided we would try to "scoop" the cavity out, put the medicine in and then the filling on. In the future, if there were a lot of cavities or in bad shape, he would be sedated.


I am not ashamed to say I hate the dentist. Maybe because when I first went to the dentist in my toddler days I had 24 cavities, my mother reminded me. I thought I only had seven, but my mother said, "No that's all they filled" because I was screaming the whole time. (Shudder) Now I have perfectly straight (thank you braces) teeth and stretch going to the dentist as much as I can.


Needless to say, I was a bit apprehensive about going this week with Brady. My mother was away so I was going solo and not looking forward to it. When it came for Brady's turn, the dentist reminded me they would put Brady in a sleeping bag-type holder to prevent him from moving around. I had already stated that I didn't want to be in there with him because while I knew he would be fine, I didn't think I would be.


I followed the dentist down the hall and into the room wear six other mask-wearing people waited. They held their arms up with the gloves on intact, looking at me expectantly with the specimen-child. I held Brady and started to feel a bit panicky. "Um, I'm just going to lay him down and go" I told the doctor. She said, "That's what I want you to do." I did not want to see them strap him in the magical stay-still bed. I grabbed the carriage and hightailed it out.


I had to go outside to use my cellphone, where I left a message for my mother and then called Tom. After speaking to him for about 20 minutes I went back inside and the doctor was in the hall with Brady looking for me. My worries, apprehension, nervousness and guilt were for naught - apparently he fell asleep after they put him in the bed with music playing and they did their work. (Ahh!) Must I make such a big deal over EVERYTHING?!?!?


And on top of that, his front tooth held the largest cavity, which was the tooth that came in split and last Christmas eventually broke the tip off. They fashioned the filling as his tooth, and you can see from the first picture his top right tooth looks fabulous. (How'd you like to put your finger near those chompers??)

Dum, dum.. (shark music) She's BA-ACK!

Ahhh.... it's June. Activities for Michael's last year at an elementary school are OVER! (that would be three major events plus a yearbook and slide show to produce over a three month period). Baseball, where we lived and breathed for two months, is OVER! (although we have summer league now.) Scouts... going on the down low. Could it be... will it be.... perhaps (gulp) some time to chill out?!?!?

You mean... I can actually blog again? It's so hard to find the time to chat with everyone. And then even when I wanted to send out a little update, I would think, "I can't write THAT... they don't even know about THIS yet!"

SO here is the Cliff Notes version, on some very important stuff:

First off, Mr. Brady is officially a CRAWLER! He did it a little at a time, but at 31 months of age I could say he became an official crawler. I can also say at 31 months of age, he became an official CRUISER! Yes, folks, he managed two modes of transportation at once. At 32 months of age (last week) he walked with his posterior walker unassisted -- all legs and arms, all him :) He did it smiling with his scrunched up face the whole time, as if he was laughing at me.

Secondly, his eating has gotten much better --still following all of Amy's hints and strategies (thx!). Loving the cereal bars and have tried a few times jelly sandwiches. Not gaining a lot of weight, but he looks like a little kid sucking out of his juice box rather than me holding a bottle to his mouth. How cool is that???

Thirdly, we had his echo last week which showed (good news) pulmonary stenosis down to 20, and getting better (Lisa said he could outgrow this)and (bad news) his supra valvular aortic stenosis getting steadily worse (at 60 now). The doctor said he just wrote a paper on what the magical number is to do a catherization, and it's... wait for it.... 60! This means we are going to have one, probably in August. He said we could wait til it gradually went up and next year do it at 70, but he'd rather do it now while Brady's strong and healthy. Makes sense, but still... ugh. We've never had one. He also said that if the gradient of the narrowing is a true 60 (sometimes the echo can be wrong) we would have heart surgery after the cath.

And fourthly more bad news, we are losing our speech therapist tomorrow. She is moving to Arizona :(. We already have a new one and she is ready to pop in two times a week, but she's not Vikki and I can already tell I am being mean to her, subconsciously, of course. :) She is extremely qualified and an excellent therapist, but Vikki has been with Brady since he was five months old. I have been with her through two boyfriends, a psycho Internet date, and a hormonal sister (all on her end, not mine!)

The only thing that comforts me is knowing that Brady's OT will remain his OT after he leaves Early Intervention (he's in that until age 3, then it's preschool) because she got a job in the school system and she will be working in his preschool. I LOVE that continuity! His PT, who has been around since he was four months old, will always be in my life, I think! She is a sweetheart and we have very close ties.

It's amazing I find these blessings amidst the health concerns, but I feel if I don't see them, I will drown in the unknowing and unthinkable. I will worry about his cath and its aftermath in August, but I don't want to dwell on it now. I know it will always be on my mind somewhere, but I have another son, a husband and two months of summer before that happens. We have a great vacation planned for Point Sebago again next month, plus I plan on seeing Lisa even though she doesn't know it yet ;)

I apologize that I haven't caught up on everyone's blogs, but I am doing that now. I know some of you have had health issues and my prayers are with you.