Thursday, May 29, 2008

Doing Better

Skylar is hardly ever sick, and I guess its been a while because I forgot I can turn his pressures up to help move the junk in his lungs and in his chest. He has been doing great and still is. Its just a delicate balance you have to fallow to help him get over any illness. So today i turned his pressures up just one, and what a difference that has made. He is moving much more air, and it is allot easier to get everything out. ill leave his settings where they are now until this virus passes, which hopefully will be in a few days!!! And once its gone we will go back to his regular settings.

Wednesday, May 28, 2008

Slowly


Skylar is slowly getting better, he has a virus that is going around Stanwood right now. He is about half way through it, so continued prayers would be great. He has been on antibiotics since Sunday. He has so much coming out of his nose, I did not know such a small child could make so many boogers... He is in a good mood, today has been the best day, he has been playing and talking and almost acting like his normal little self. Im standing watch, listening to breath sounds and only coughing when needed, he seems to do a pretty good job with coughing on his own, but with his SMA it still isnt how it should be. And Sky seems to get dry fast if you over cough him, so Im still sitting bed side, and I will be until Sky is 100%!!!!

Tuesday, May 27, 2008

On The Mend

Skylar Sunday Night, not very happy. Im so
glad he dosent look like this now.

well Sky had another great night, it looks as if what ever this was has finally gone.Thank God!!! he is a little tired today, but thats ok, he needs to catch up and finishhealing. There was a little concern with the runny poo's and high fever,as he started VPA just 10 days ago, and from what our pharmacist said that is a rareside effect, but it effects very few, so we stopped the VPA. But today i talked with ournurse and she and our doc think it was a virus going around Stanwood, she saidthey have had lots and lots of kids come in with high fever, runny poo's and just notfeeling good. We are going to finish the antibiotic and as soon as it is gone we are going to start the VPA again, as they dont think thats what caused this. So Skys stats are back to his norm, So Thank you everyone for the prayers!!! Big HugsSheila

Sunday, May 25, 2008

Wow

So Skylar is doing a little better, fever isnt as high today, Thank God. But man oh man is he a cranky little guy. he dosent want nothing to do with anyone right now, and be prepared if you have to cough or suction. I talked with our pharmacy yesterday, and some uncommon side effects of the VPA is runny poo's and high fever. But its a small % that get these side effects, well Sky has those so we stopped the VPA. We will let him get back to his norm and then Ill talk with our ped about lowering the dose. So thats it for now. Big Hugs Sheila

Saturday, May 24, 2008

Mystery fever

well Skys got something, his daddy has been down for 4 days, now Keith is a big man and it takes lots to take him down. So this morning when Sky got up you could just see it in his face, so i checked his temp, oh yeah a whopping 102.4, but he is clear, his RR is 19 to 22, his O2 is a little lower 97, and his HR is 150 (due to fever) so Im sitting bed side watching and listening, no extra buggies, and the ones Im getting out of him are the norm. he is happy, talking and playing. So Please say a little prayer that what ever it is, its gone just as fast as it came on. I know the drill and if he gets worse we will start nebs and CPT and coughing, but so far he dosnt need anything other then Tylenol rotated with Motrin.

Hugs
Sheila

Thursday, May 22, 2008

Sunday, May 18, 2008

5 Days In


Well Sky has been on the trail drug for 5 days now, and we have already seen some improvements. His naps have gone from 3 hours to an hour and a half. His up time is lots better, it use to be you didnt even try to get him up first thing in the morning, we would wait about 2 hours, now he is asking to be up after being awake for 30 mins, his endurance while up has gotten better too. It will be interesting to see how he is doing after a month if we are already seeing improvements. Hope everyone has enjoyed the nice sunshine, we have!!! hugs Sheila

Friday, May 16, 2008

Sky Loves The VPA







One worry with starting a med is what if it is something they wont take... well I dont have to worry about that with Skylar, he thinks his VPA is candy, and I have to let him have the syringe for about 15 mins after he has taken it, or he gets mad at me for taking it away. I hope everyone enjoys the weather this weekend, its going to be so nice out... Im sure Sky and I will be out lots this weekend!!! Hugs Sheila

Tuesday, May 13, 2008

Wednesday Is Our Big Day

My happy Sky, listening to Blues Clues....

Mama and her little peanut

Pinch or pick?


I love my little man!!!



Skylar will start the VPA on Wednesday... The parents Ive talked to about it say we should see a difference in about 3 to 4 weeks. And definite improvements in 3 to 4 months. I'm a little nervous about giving my baby drugs, but I also know how well these has worked for so many other kids with SMA. So I'm pretty excited too. Keep us in your prayers that all goes good!!!

Monday, May 12, 2008

I Hate SMA

SMA is such a cruel, cruel disease. It takes so much from little ones who never fuss, little ones who never ask for what they could never do. Every SMA child I have ever seen is just happy, they are such beautiful children. The past two weeks have been very hard on my SMA family, princess Skylar age 7 lost her fight with SMA and flew home to be with our Lord and to be with so many other angels that have earned there wings. Today Lily age 6 went to be with all the other SMA angels. It just breaks my heart to have so many precious little ones die from this disease. How my heart aches for each and every family member. I pray that guidance is given to those in charge of research, for those in charge with finding a cure. We need one desperately!

Awarness



May 14th there will be 100's of SMA parent across the country sending this to media stations nation wide, our hope is that someone will listen and show t on the air. So many kids die from SMA, and no one has heard of it.

Friday, May 09, 2008

Happy Mothers Day

June 2006
May 2007 May 2008

Monday, May 05, 2008

Skylars 3 Year Check Up

Skylar had his 3 year check up today, he weighs 33 lbs and he is 39 inches long, so he is still in the 75% on the growth charts. he had his blood work done today too, poor kid. I have not seen Skylar that mad in 2 years. We got some very good news today, Skylar will be starting VPA in a few days. this has been a trial drug for several years for SMA. And it has been proven safe for one, it has also been proven to increase the SMN1 proteins that Skylar is missing. Once he starts to build the proteins he will get stronger. He will have o have blood work every 3 months to make sure everything is good, that stinks, but well worth it. I have been told by other SMA moms that they started to notice the effects of the VPA in as little as one month. We have seen and heard of so many TY II kids on VPA walking, it gives me so much hope. Will Skylar walk??? I dont know, only the Good Lord knows that. ill be happy to see improvement in head and neck, and trunk strength, to see him get more movement in his legs and better control of his arms. it will also help strengthen his swallow :), maybe this year at Thanksgiving, Skylar can partake of a real Thanksgiving feast. Oh so much to be Thankful for!!!

Sunday, May 04, 2008

Sky Driven Pic's, Little Video and Allergies







We have been having not as much fun the past week, allergy season is upon us, and Sky has been miserable, watery eyes, boogies out his nose and with that comes extra boogies through his trach. But today he seems to be doing much better. I cant really give him to much for his allergies, because they tend to dry you out, and being dry and having a trach do not go hand in hand. So its called deal with it and make the best of it as you can.

Monday we go see our local doc for Skys 3 year check up and blood draw, if all goes good with his blood work we should be able to start the VPA soon!!!!!

video