Skylar's Journeys a boys battle with SMA: July 2006

Friday, July 28, 2006

Back From Clinic

Well what a day, did you know it takes almost 2 hours to get this kid-o ready to go somewhere. I was a busy bee this morning. Skylar had his first pulmonary check up this afternoon, and he is doing great! We dont have to take him back until the end of September. They will be lowering his setting in preparation to getting him ready to have time off of his V-Pap! Yes were going to be getting small breaks, 15 mins to start and we will go up from there. The short term goal is to have him off the V-Pap during the day and on at night. That would be great!!!! Time off will give me better time with building his neck muscles.He lost a little weight, but Im not worried about it. He weighs 23.9 lbs and he is only 15 months old. He has a very good apatite; he averages 40 ozs a day. They tested his end titles and they were 34. Thats the carbon level, and its very good!!!So it was all good news today. We planned on visiting our little friend Connor and his mom today, but they got to go home last night... So it was good not visit today, because they wernt there. We do look forward to seeing all of them sometime soon! Good friends are hard to find.Sorry no pictures this time. Ill post pic in a few days!

Saturday, July 22, 2006

Special Prayer Needed

Everyone who reads this blog please say a Prayer for our friend Connor. Or as we call him little bug! We meet baby Connor during our stay at Childrens. I just spoke with his mom and they are back in the ICU. I cant give details, but I can say he is in need of prayers right now. So please, pray for our dear friend Connor, pray for healing. Thank You and God Bless

Friday, July 21, 2006

Staying Cool!!!

It is HOT!!!! And Im hooked up to heated air 24 hours a day, so that makes it even hotter. But Thank God for my mama and daddy they know a few tricks. My daddy got me this gel filled dew rag that you let soak in cold water for 30 mins and it stays cold for days. And my mommy puts small blankets in the freezer for a few mins and places them under me. Man does that feel good!!!! And then there is the most important swimming pool. Yep I have a pool. My mommy and big sister Monica set it up for me in the middle of our living room. Sounds kinda crazy, but it worked! I had a blast playing in the water, kicking my legs and splashing my hands. It’s hard trying to catch the toys that are a float though. Monica and I had lots of fun. She is such a cool big sister, she loves me lots!!!! Im kind of sad today though, today she has to go to her dads for his part of the summer. She wont be home until the first weekend in August, and thats only for 2 days. My mommy says it will go fast, maybe for her, but I know Im going to miss her lots!!!!! If you read this sissy I Love You VERY much, you make me happy and you make me laugh!!!

Wednesday, July 19, 2006

New Photos From Home

Gaining more and more strength each and every day!!!!

I love playing with these two toys they spin and move, I dont even realize Im working out using my upper arm strengths.

AHH.... That smile says it all Happy and very content!!!

Skylar is doing very well, he is going in for his pulmonary apt next Friday, from what I understand we will be meeting with a diet ion, his pulmonary doctor, and someone from the trach team. We have been working with Skylars exercise ball, so far so good! He does really great for about 10 mins. So our goal is to increase his time on the ball a little more each day.

Thursday, July 13, 2006

Happy Happy 13th

Today is a great day, it is my mommy and daddys wedding anniversary. So Happy Anniversary I Love You guys!!!! I also found out today that I can get rid of all my meds but the vitamins (YEAH), I have to do a fallow up with cardio at the end of August. So no more nasty meds!!! In the past week I have pushed through my 1 year molars, I was a little cranky, but not to bad. My mommy has been working with me religiously, and I have gained strength in my upper body. This weekend she is getting out my green exercise ball. I cant wait, I use to love to play on that ball. In all Im doing very very good, my stats havent changed, Im still keeping my oxygen level at 98 to 100%. My mommy is even giving me breaks off of the probe, I guess she just needed a bit of time to really see how I was going to do at home, so now she has her base line, and now I have one less wire in my way during the day. I still wear it when Im sleeping, thats an order so Im sure that wont be changing anytime soon. Other then that Ive been playing and eating, and playing some more. I truly love being home with my family!!! They are the greatest!!! I Love You ALL so much!!!!!!!

Happiness is being around the ones you love!!!!

Oh yeah I forgot to tell you mommy is working with me on using sippy cups. I dont have it down yet, but Im sure Ill get it!!!

This is part of my PT, my mommy puts the toys on the glass and sets me down. I have to find them and play! Its quite fun and Im doing really good with it.

Nap time. Nothing more precious then a sleeping child!!!

Hanging out with Snoop!

Tired baby boy!!!! Again there is nothing more beautiful!!!!

Tuesday, July 04, 2006

4th of July Celebration

The manly way to light your fireworks, no punks required!

Our day started out normal, kids playing games, dog lying on the floor, Sky playing with toys. The fun began with a balloon toss with Monica and myself in the yard. I think I won, because I didnt get wet. Then it was a yummy feast, BBQ chicken, burgers, mac salad and ice cream treats. The kids were all buzzing as it started to get dark, so out we went. I learned fast that the new sparklers are not so great! I helped Sky hold his first sparkler tonight when I noticed these babys really give off a spark. Well it came down to a little hole in the pooh blanket. So no more of that, Skylar was good just watching and so was I. Everyone seemed to have fun. It took our little bug a total of 2 mins to fall asleep after the nights events, he loved the colors and the sparks. It was a GREAT day!