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.

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.

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 (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.

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!

Introducing...

.... the newest member of our family, Molly Jane, a Scottie. We just got her last night from a friend. She will be eight weeks old on Tuesday and the cutest little thing. I know, I know... we don't have enough challenges in our life so why not throw a puppy in there??? I haven't been able to catch up on everyone's blogs either, so I will be doing that over the weekend. Hope everyone is having a great week!

Counting My Blessings

1) The weather is getting warmer ~ yeah! It means spring is coming! I am SO ready!



2) Brady had his first Drop Off Playgroup on Friday. I dropped him off at the Early Intervention Center at 9 a.m. to his Education Therapist Julie, where he was under her care for two hours. I went back to pick him up at 11 and she gave me a report on his time at "school". He played, went outside, had snack, did puzzles.... he had a great first time! It was really strange to drop him off and go. I only managed to go to Target, but next week I will get to the Y and work out. He came home and ate lunch then crashed... he definitely played hard! I am so thankful that it went well.

3) I am VERY grateful I went to my friend's house for an all-day scrapbooking day. I think I haven't been there in a year so it was much-needed and a lot of fun. The girls who are there are a blast and I got a few pages done. Tom and I trade off here and there so we can each have time to do the things we like -- he knows the golf season is coming up! LOL.




4) I am thankful that we had over Tom's sister and her new husband for dinner this weekend. It was great getting to know him; he is very upbeat and friendly and we had a fun time playing games after dinner.




5) I am very blessed to FINALLY be reading a good book: it took awhile to get interested but now I am gung ho. I find my life always flows better when I am reading something good. Not sure why that is ~ maybe it's a little treat for myself each day. Whatever it is, I am glad to have it. :)

Wow - is it Friday already?? This week has been crazy, although I am noticing I am always saying that. Maybe I need to redefine "crazy".

Last week, we went in for Brady's echo needed for cardiac clearance for his eye surgery this past Tuesday. After we got the clearance from the cardiologist, we went down to Pre-Op to find out if we had to hand in our little piece of paper marked "CLEARED". Nope ~ they sent us back to cardiology for the cardiac anesthesiologist. After the nurses discussing for a few minutes, they said we were all set and Brady would be taken care of on Tuesday. Great!

Friday came and went with no phone calls asking us to do anything different before surgery, so Monday morning, before I went in to work, I called Pre-Op. Just checking in... the nurse looked him up, saw he was in the system and said we'd get a call in the afternoon about what time to be there the next day for surgery. Great! I kissed Brady Bunch on his head, said bye to my mother and left.

About 10:30, I get a call from the surgical coordinator at the Ophthamologist office. She said, "Umm.. I Brady needs to go to Pre-Op today before 1:30, when they close. If you don't go he won't have surgery tomorrow" WHAT?!??! Of course this is also the Coordinator who DIDN'T coordinate the need for the echo last month, when we were SUPPOSED to have surgery and it got bumped a month. So, I called cardiology and a nurse there spent almost 10 minutes researching the whole thing. (They always help me :)) She comes back to the line and says, yes we did have to go and explained he needed to see anesthesiology, and get his vitals.

ARGH! Obviously whatever needs to be done for Brady is fine, but couldn't we have a little more notice than this? That's why my mother and I trekked around the hospital last week, why I called the morning before. I wouldn't have gone to work if I knew I had to be at the hospital - I only work one or two days a week as it is, and luckily they just go around my schedule. I then had to call in more favors so someone could pick up Michael (Thanks, Stef!).

My mother drove to my work, picked me up, then we drove into the hospital. When we finally saw someone, they mentioned Brady would probably be staying overnight after the surgery. WHAT!?!?!? Everyone who has this surgery goes home after, even those with worse cardiac issues than Brady. The nurse said it would be up to cardiology after the surgery, but pack a bag just in case. Again, whatever is best for Brady, but I didn't even know this was a possibility. I spent sometime on the phone then juggling where to send Michael off to now. I got home that night at 7:30 after hitting the store on the way, exhausted.

The next morning we headed out, and everything went smoothly, more or less. They had to wait for a cardiac anesthesiologist which put us about an hour behind schedule, but the anesthesiologist we had was FABULOUS and spent extra time with him. Brady himself did great - with no food for eight hours and only an ounce of apple juice three hours before surgery, he was not crabby or cantankerous. He sailed through with flying colors and recovered very well, sleeping most of the time in the recovery room and eating a popsicle or two. We were able to be cleared to go home 4-1/2 hours after surgery when they saw everything was fine cardiac-wise and anesthesia-wise. He actually does very well with the anesthesia, not getting sick or crabby. He just slept. We got home about 7:30 again, he drank a little juice, then went back to sleep for the night. I was so glad to be home!

He was a little constipated the day after surgery - I didn't realize it could be a side effect to the anesthesia (you remember, the surgical coordinator did not do a great job). I will just remember to give him Glycolox after he wakes up from surgery in the future. His eyes were only a little red after, and three days later they are still red in the center, and will be for another week or more. His eyes seem rounder for some reason, maybe just because he is more aware of what he's looking at now (my girlfriend said, "yeah, now he sees how ugly we are all now!" LOL). Every day I notice a little more interest in him and his surroundings. We go back to ophthamology in two weeks for a follow-up, but I think it turned out great. (except trying to get this ointment in his eyes twice a day - ack!!! Impossible!!)

Funny how the biggest pain was the day BEFORE the surgery. Just aggravation~ especially since it was all stuff I COULD have known beforehand. I can work with whatever is thrown at me, but if you KNOW I have to go to Pre-Op, can you give me more than three hours notice when I am 45 minutes away from my house? All that matters, of course, is Mr. Brady and see how great he is:

Hey folks~ thanks to ALL who have been praying for the little Braidster. We are home and doing great. I will post pictures and the whole story tonight, including my AGGRAVATION factor the day before ;). But the little man is back to himself and we are all doing better. Thanks Mom, for coming with!!!