Monday, April 21, 2008
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
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
Friday, April 11, 2008
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
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
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
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.
Saturday, April 05, 2008
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
Tuesday, April 01, 2008
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 (http://www.williams-syndrome.org/). 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.