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.


Julie said...

Glad to hear from you. I was starting to worry. Glad things are going well. Noah seems to take 1 step forward and 1 back with his eating too. The only meat he still eats is hot dogs. He hates eggs so I give him lots of peanut butter. At least Brady will eat baby food. Noah decided way before he was ready for table food that he didn't like baby food. There was a good 6 months that I swear the pedia sure was the only thing keeping him going.

Ava Jewel Leilani said...

I am sorry to hear Brady has issues with food still, though I have to be honest it does ease my mind knowing that Ava is not the only one with issues like this.

Good to hear from you, see what a puppy will do to you ;)

Every minute counts.... said...

Love the update. I am so glad that things are going well and you are back into the swing of things. Spring is coming...I have flowers all over my yard now so I'm sure it is headed to the East coast!!
Thank you for the tip about anest. After reading about Lexi Soutos i am forever thinking about it when we go in for anything sedated.

Hope Baseball is going well,