Monday, April 21, 2008

Brady has decided "I'll show them. They want me to move on forward? I'll show them!"

I know this is his thought process. You see, nap time, bed time, it's always the time to pull yourself up, stand on the side of the bed and chatter until someone picks you up! Please leave that door open so I can stretch my neck out around the dresser and spy you in the hallway, while standing in my crib. If I spot you, I might start jumping around and wiggling my way around the bed.

Can we even GET mad over this? :)

Friday, April 18, 2008

The countdown is on! Only a week left until Brady's Walk and we're really excited! I still have some details to do for it, finalize food details and such, but the tshirts and bracelets have been ordered, flyers done, emails sent. I hope some of our WS families can come and I hope we have nice weather! We're gathering at a friend's house for the after-party with food, music and some surprises. If you need details, email me and I will get them right out to you.

We had our new ST Rebecca today who is extremely SMART. She is so hands-on with Brady. She had him obeying her when she said "Stop" shaking the rattle and "shake" it. I never really saw him "obey" like that before... it's amazing all the things I realize AFTERWARDS that he can do. I must start challenging him more, because I think he is not as far off as I think he is

Sunday, April 13, 2008

On Friday mornings for the past month, I have been dropping Brady off at our Early Intervention childcare center at 9 a.m. to his Developmental Therapist Julie, and then picking him up at 11 a.m. He's had Circle Time, Snack, played outside with other friends, and done arts and crafts. He did his first project there, a big green shamrock with paint and glitter. This is a great program for him and a great sample of what's to come next October when he turns three and starts preschool.

He's had some good days, some bad days. We're getting to the more frequent bad days.

In the past, Julie has reported to me that he seems to get upset and startle with the kids. She was thinking the very bright hospital-like room and the other kids bothered him. I didn't buy it - Brady's been in lots of situations where there is a lot of kids and he is fine; in fact, he is very interested in watching them. My house is hardly a quiet one. I bring him to the store with me because he loves watching people and looking up at the lights. But there was definitely something not right, and I do believe Julie is a good therapist so I was ready to listen. We talked about starting up the brushing again to help in this sensory overload. I also made a note to make sure he had eaten a good breakfast since one time he was definitely hungry.

Brady's PT was at the school with him on Friday as Julie was out. When I came in to pick Brady up, I saw him sitting on Lisa's lap, head buried in her chest, almost asleep, with red cheeks. Not a good sign. She saw me walk in and said immediately, "OK, we need to have Tara (his OT) come and observe him, because he is definitely having sensory issues." As soon as I had left two hours earlier, he cried for awhile, then was fine, did great feeding himself, then when they went outside he freaked out, almost a panic attack, as Lisa described. I have NEVER seen him have any sort of anxiety issues, nor had my mother or Tom. Lisa acknowledged there was a new kid at school that day who cried off and on and that set Brady off. I know he is very sensitive to other kids crying, he gets upset for them. (What a sweetheart! :) )

Lisa said they are going to make some changes in the room, turn off one of the fluorescent lights, make a quiet reading area for the kids which will be Brady's quiet area too. But the biggest revelation was what Lisa thinks might set him off in the beginning: he misses me! She said a few times when I have gone to work and left him with her for PT at home with my mother, Brady has cried lately. And --duh!-- it is very common for 2-1/2 year olds to have separation anxiety from their parents -- WS or typical. We're always thinking about the WS factor in things, we forget about the regular stuff! I said Brady goes to others very easily, but Lisa pointed out I am usually there. Even though he has known Lisa almost his whole life, I am not there.

I never went through that with Michael. Michael was and is a very social kid, asking store clerks where to find things and asking other kids n the playground to play. At his first day of preschool it was "Bye, Mom!" I suppose if he was a little sad to see me go, I might have thought of that with Brady. It's nice to know Brady likes me!

I am hoping we will be able to soothe Brady and keep the playgroup and enjoyable experience for him. (Although it is nice to know that the consensus is he really likes me :) )

Friday, April 11, 2008

MRI Update

So this is what it feels like... to leave a doctor who says we don't need to see him again except for consults :) We still see every doctor we have been introduced to... now we are EX-neuro patients!

The MRI came back fine, everything looked "normal" with no problems. They were looking for more of a reason other than WS why Brady was delayed, also a reason for his hypertonia. It's all WS, baby! The doc said we can come back in a year, or he can just be our contact person for neuro if we ever have a need, or if Brady develops issues.

I will leave you all with those good thoughts and leave the horrid school day to tomorrow's post ;)

Thanks for all the well wishes!

Thursday, April 10, 2008

Today we started with our new speech therapist. We still have our old one on Tuesdays until June; then she moves to Arizona. :( So Rebecca started today and will come on Thursdays until June, then she will come twice a week. She is working on communication and feeding as well, and seemed very knowledgeable, gave me a few hints and ideas to help Brady. I think it will be a good fit. She was here for over two hours though, which knocked out the only hour I had in the day scheduled to do stuff around the house. Argh!

Tomorrow we see the neurologist to give us the results from Brady's MRI last week. I will post as soon as I can - the appointment isn't until 4 p.m. Double Argh!!!!

Pleasant dreams everyone, I am off to clean my kitchen (yes, I know it is 10:00 at night!)

Tuesday, April 08, 2008

Heh, heh, heh.

Yep, that's Brady. He's a little sneak.

We've all been fooled. This little cherub has played the "I can't handle eating textures" card long enough!

You see, Brady makes a big deal when he's got some extra textures in his mouth, some chunk to his food. HOWEVER, as we noticed today, he has NO problem with chunks of OREOS in his pudding. NO problem with slabs of chocolate icing sticking in his mouth. NO problem with that straw when there's Pepsi at the other end.

Aha! I've got your ticket, buddy!!!

Sunday, April 06, 2008

We have all made changes in our life based on our children. We don't always stay up too late because we know we have to be up with them the next day. We may forgo a nicer restaurant because they don't have Dinosaur Chicken Nuggets on the menu. We may have to take a break from driving a long distance so people can go potty. We watch our language, watch our friend's language, try to set a good example.

Those of us with WS kids may make other changes. Some forgo noisy environments. Some forgo crowded establishments. Some forgo places too bright, too dark, too many flashing lights. Some of these may be the same for typical kids as well, but I know with having both a typical kid and a WS kid, I would take a chance on some things with Michael and definitely not with Brady.

I know what Brady needs; for example, if he gets upset, he likes to stretch out. I have been known to lay him on any floor, germs furthest from my mind - hey, isn't that how we build up our immunities? LOL. I do have my limits, like the movie theatre floor would be a stretch for me. But we purposely sit on the edge aisle in church so he can sit on the carpet if he needs to. We don't interrupt or bother anyone else and it gives him a little more room.
Brady isn't bothered by loud noises, so we can bring him to the movies without a problem. He is actually really good, not a peep, and I can sit with him in the stroller and feed him a pudding if need be. At church, he only gets startled by the bells the altar boys ring at one point in mass. I am now an expert on detecting when that is; I slowly start patting Brady's head a minute or so before, then put my hands over his ears when they ring. Doesn't even flinch now!
He loves watching people and animals. I rarely go to the store without him because he is so interested in everything around him. There goes my few moments by myself so Brady can have some interaction. I used to have to get certain shopping carts, though, so he wouldn't slide out of the seat (thank you, low muscle tone).

I really noticed all this today when we were late to church and missed our usual seat. We almost sat down in a pew when I realized we didn't have that little spot for Brady to stretch out in, or even any room for him to stand, which is his other passion. We quickly maneuvered over and sat a few rows behind our regular seat, which also had that little spot for him. Phew! We would be able to stay.

Some things we do automatically (leave the house, make sure he has his blankie, milk, diapers) and some we learn as we go along (five, four, three, two, one.. cover his ears... NOW!). Some we learn by the great advice we get (thank you, mommies!).

Saturday, April 05, 2008

I know it has been awhile since I posted a "real" entry. Yes, partially because of the insane moment I agreed to own an eight-week-old puppy (although Molly is doing great now, and housebreaking is coming along fine!); yes, partially to an overloaded schedule of therapies, PTO, Cub Scouts, Brady's Walk, baseball, work, being a mom, wife, friend, daughter, sister (some of which are my fault, LOL); and yes, partially to a never-ending winter season that sucks all the energy out of you.

I spent the end of March and beginning of April away from my computer and the blogs. I felt a little overloaded in my life both physically and mentally, and did to myself what I do when the computer acts up: turn it off, wait a little while, then turn it on again. Do something small on it at first, then gradually work up to the potential you had before.

I felt like I was on auto-speed, never catching up on what needed to be done, and never getting ahead to make things easier. I still have things looming over my head that I have to do, and they sit there, mocking me. I think I also felt overwhelmed with Brady, who had been advancing really well for many months. All of a sudden, his eating habits froze up again for a few weeks and he would only take the bottle. He is back to his regular eating now, but it always throws me for a loop whenever he gets off track with his eating. It's like we accomplish, accomplish, accomplish... then BAM he goes on strike and we have to start over. He is so delayed in all areas that I don't think it is asking too much for him to graduate past eating Stage 3 foods.

It is this never ending cycle; Brady falters and steadies himself, then gets up and moves along.... then he trips and steadies himself, then he moves along... etcetera, etcetera. I think I got tired of starting over again. Things are back on track; my head is clearing, he is back to his good eating habits and I am clearing my schedule for only the things I really have time to do. We also only have one more Children's Hospital appointment (this week coming up) until June, so that is a little breather, as we have been going, going, going (more on that below).

I am catching up on the blogs, so although I may not post I am reading and putting my two cents in when necessary LOL. For those of you I spoke to, thanks for bringing me back down to Earth.

SO... what has Brady been up to, you ask? WELL... in a nutshell:

(1) we got his DAFO's, an insert in his shoe that goes above his ankle to give him support. We were supposed to get his soft hand splints, but I am awaiting a call from the OT at the hospital who has not sent the prescription in yet;

(2) his eye surgery recovery went well, his follow-up visit to the ophthalmologist went well also. We don't have to see her again until June - no glasses needed;

(3) our pedi was concerned that his phosphorous levels were high (5.5, she has 4.4 as normal, in the range of 3.3 to 5.6), so we decreased his yogurt and pudding intake (all dairy is high in phosphorous, but he doesn't drink enough milk to decrease that). I felt bad about his yogurt and pudding because he loves these and will eat all the time. We had to go to the nutritionist, who was helpful. We did see that his phosphorous levels had dropped since December, and his calcium was good (9.9) so I will touch base with his pedi about this next week at his weight check;

(4) we have secured another Speech Therapist for a second day of speech a week. We love our Speech Therapist we have now, but she is moving in June to Arizona, so since we need another day of Speech, we thought to add someone else in. The therapist we got was all of Brady's therapists' first choice, so I am excited about that. She starts next Thursday and will help with feeding;

(5) drop-off playgroup is moving along well, some good days, some constipated days :)

(6) Aspen sent me Daven's old walker, which Brady is using with PT. He stands up pretty well in it by himself. He tries to move sideways though, like when he cruises the furniture, so that his been a little tricky;

(7) Brady had an MRI on Friday for two reasons: because he has never had one and because he is delayed (even though that is common with WS kids). Long story short, we ended up waiting two extra hours to go in (a patient was late and backed everyone else up). So when we were about to go in, the anesthesiologist asked what time Brady had last eaten. At that time it was nearly 12 hours. He mentioned that they liked to do WS kids early so they don't become dehydrated with the anesthesia (since they have problems with anesthesia). He decided to give Brady his IV a little before he put him under, so it worked out fine, but now I know --and you WS mommies need to remember -- if you EVER get bumped when your child is fasting for anesthesia, tell the nurse, "Bump someone else, because my child has WS and cannot get dehydrated before taking anesthesia." Also, the anesthesiologist said in WS kids, upper right arm is best for blood pressure readings because the ventricles are wider there... or something like that. Just remember upper right arm - even though sweatshirts is fine.

The calendar says spring, baseball season has started, but it is definitely not spring weather yet... waiting, waiting, waiting. That should cheer everyone up.

Wednesday, April 02, 2008

Oops, the Walk is at 10:30 and it is actually less than 5k - it is a beautiful scenic stroll around a pond. Last year it took about 45 minutes or so, after we got going.

Tuesday, April 01, 2008

Brady's Walk 2008

(Hey folks ~ I promise to update more tomorrow, but I did want to put out the info I had on Brady's Walk. You can email me for more information or directions.)

On Saturday, April 26, Brady’s Walk 2008 will be held at D.W. Field Park in Brockton, MA to raise money for the Williams Syndrome Association.

As many of you know, my son Brady, was born in October 2005 with this genetic condition that affects 1 in every 7,500 births which causes physical and cognitive disabilities. The money raised will go to the Williams Syndrome Association ( This organization is pinnacle in aiding research efforts, WS education, and bridging a community of support and friendship.

Brady is now two-and-a-half years old and has had quite a busy year! He had eye surgery this past month and just received his DAFOs (Dynamic Ankle Foot Orthosis) to aid in his ability to walk. He continues with his Early Intervention therapies, and has added Music Therapy and Playgroup to his schedule. The Music Therapy class has invigorated him, and his love for the guitar has really shone through.

If you would like to join us in the Walk, please do! Last year we had over 35 adults and children (and one dog!) participate, by walking, scooting and bike riding. Let me know and I will forward you the info. There's no fee to walk -- just come along and hope for some nice spring weather!
If you cannot attend, but would like to donate to Brady's Walk, please email me and I will give you the info to send your check in. Thanks in advance!