Friday, January 30, 2009

WOW

Sky enjoying his candy cane.

What an amazing day... Skylar had the best day ever today, he woke up with lots of spunk and it lasted all day long. We were very busy playing all morning and afternoon, that when Skys dad got up you could hardly see the floor around Sky and I. So I did a quick pick up and went back to playing with my Sky. This evening he enjoyed playing ball with Moni and I, we played with his new Spongebob cards, and played 31 for a while, then i thought id show my kids how to build a card house, yeah right. Ah it was fun! Then painting, and I mean lots of painting. Skylar has been on cue all day, we have been working on his loud voice, and I must say he has found it, but now I dont know how to get him to use his soft voice, everything has been very load today :) but lots of fun, its good to hear him, and I mean hear him. In all today was perfect!!!

Right now Skys in bed waiting for his story that he picked out, but he didnt just pick out one tonight, it looks like mamas reading 8 books for bedtime story's. :)
videoSky painting with his sissy, she wasnt moven fast enough... my little bossy boss.

Thursday, January 29, 2009

All Knowing Oz.... I am not


I think sometimes, i need to remember that Skylar is a 3 year old, and kids sometimes just have mystery illnesses. But it is very hard to not see beyond him having SMA, and something small turning into something huge. So anyways my mad ramblings, Sky had a funky day on Monday, he got sick 2 times. Skylar has never been one to throw up, I think Mondays getting sick was the 3rd time in his life. Well after that he didnt want anything to do with eating, so I did, yep i put his NG back. I wasnt going to go down that road again. Unfortunately kids with SMA can go down hill fast, and that was a road i didnt want to travel. So I put the NG in and Sky had some pedialyte to settle out his tummy. he has been fine ever since, except for tonight, while taking his nap you could tell by his stats that something was bugging him, but he sounded crystal clear, his HR was elevated a tad and he just wasnt napping good. But when he woke up he was happy and his normal little self, but his HR was still higher then his norm. He says he is good, that he feels good, that he has no owies. So who knows, somethings i guess are beyond my control. Right now he is watching and talking with Blues Clues, just as happy as ever. The only thing I can think that would be bothering him is the NG. But I have to make sure he is up to speed on his intake before I can take it out, maybe he will be up to his norm by Sunday. So its just watch and see, you just never know. he is a kid, and kids get sick sometimes for no reason, and just like that its gone. I really wouldnt even call him sick, as he looks wonderful.

Monday, January 26, 2009

Skylar grumpy pants

One example, in past play, Sky thought it funny to have an ant on his nose, today you would of thought I was Torchering him.


Wow what a grump I have today, it could be he slept like total dog pooh last night, little man just didnt want to go to sleep. This morning it was all NO, all done, and good bye (meaning leave me alone and go) Now I can take allot, and I can put up with life threatening illnesses, but man oh man do i ever have a hard time with grumpy!!! So Sky is now napping and Im getting my house work done, I hope when he wakes up from nap in about an hour he is happy and not such a grump!

Sunday, January 25, 2009

Day 2

All is well, Skylar is doing great, staying true to his 2 ounces an hour. He is enjoying soups, puddings, yogurt, jello, applesauce and milk. I know it dosent seem like a very large verity, but he is pretty happy with it. And so am I.... Keith is off getting Moni from her dads, and Chan from his moms, and when everyone gets home we will be watching a pay per view for the Royal Rumble. We cant wait, Keith and the kids will be at the next WWE pay per view in February... So yep Ive already paid for that one too, this time he has better seats, so hopefully Sky and I will be able to see them :) So in all were all good, Skys eating very well, he is happy, singing and talking away, he is even a little bossy, I hear NO allot... Our next task is learning not to talk with food in our mouth... I hope you all have a wonderful night and a good week. Sheila

Saturday, January 24, 2009

Whats Missing????

Yep Skys nose candy is gone, he is doing pretty good... So its time for him to prove himself, and do it by himself. If for some reason he doesn't do well, or if he starts to swallow everything down into his trach, I have another ng I can place, and more coming next week.
But I dont want to do that, and I know Sky is tired of the ng too, so say a special prayer the next few days that all keeps going good.

Friday, January 23, 2009

On the go

Today is the first time in almost 2 months that Sky has been in his power chair, today he asked for yellow, and he did great, except for the last 5 mins where he got lots of spit in his mouth, but once down i was able to get it out for him. he did great, and it was so nice to see him up and running, even if it was only for 30 mins.



video

Thursday, January 22, 2009

A Day in the life of Skylar

Up time off the vpap. my fav... Sky hates his DAFO's, and I heat the wraps to warm his muscles prior to
stretching to get them on, well today I think he was faking sleep, but then he really did fall asleep.

Time to go back on the vpap, after about an hour and a half off, he has his map and Dora is playing on the TV. Time to be a kid...


Sorry its side ways, i really dont know why... Skys morning knee stretch, he only wares these for 2 to 3 hours a day, split into 2 different times.



More time off that machine, he loves it and so do I... were back up to about 5 to 6 hours off a day....
So that is Skys morning, from 7 to 12:30 in between we paint, color draw, play games or just read and cuddle, I cant wait to see what the rest of our day brings!





Wednesday, January 21, 2009

Eating

Well today Sky has shown me he can swallow, and that he enjoys his foods (just not his milk) For dinner he wants tomato soup and green beans, so were gonna see how he does. If he eats like he has so far today, tomorrow, Ill take out his ng. As he will be eating what he needs, just more food, food... YA :)

Update: well Sky did good with his dinner, he actually had mash potato's and gray and apple sauce, he tried the green beans and I think they were to much texture for him right now. He just got done having some orange sherbert. So in all he did do pretty good with food today, Ive been thinking about pulling the NG, but I feel like Im rushing him. his NG is due to be changed on Monday, so i think I will leave it until then, and see how he does over the next few days eating. If its anything like today, he should be fine pulling the NG out Monday. So thats about it, eating and doing well....

Tuesday, January 20, 2009

What a wonderful start to a day

The Skylar Im asleep game...
Peek
and he is awake!



Good morning Mr Sunshine

Skylar watching our 44th President make history!!!!
he isnt to sure what is going on, other then it must be good by how happy mama is acting while watching it.

Skylar in the kitchen with mama, enjoying all those beautiful flowers.

I just love some of the faces Skylar makes, he can be so animated!

Time for a sucker and a ride out to the living room, moms all done with those dishes, and I think its time for some Blues Clues, come on lets go!











Monday, January 19, 2009

Smile




I should say that today has been wonderful, nothing less then great. Skylar has shown some interest in drinking his milk (ya) he had a little. So its a start... Also he asked to have his machine off, he hasn't asked me for it to be off in almost 2 months, so i gladly turned it off, he had a wonderful hour or so off his machines with no issues... he asked or it back so i turned it back on, I love days like today :)


Saturday, January 17, 2009

Birthday Pictures







This is our 64oz Birthday mug, its one of our little Birthday traditions, fill it with chocolate milk and drink it down.








Monis Birthday pizza




















Moni had a great Birthday, she had a few friends sleep over, and Im surprised they were all asleep by 12:30... Moni wanted fudge brownies for her cake, so I made her a big pan. The kids made home made pizza, I did the crust and they did the rest, Moni's was made in the shape of a heart ;) cause I love my girl. After cake the kids watched Wanted, good movie, but there were 2 parts that I had everyone cover their eyes, other then that it was a great movie, then they played family fude and uno, after that they were off to bed to talk a giggle.

Friday, January 16, 2009

Happy 14th Birthday Moni

Your beautiful inside and out, and I Love You so much.. Happy Birthday baby girl!!!





Moni and Shelle.



WOW... 14 Its hard to believe that my baby girl is 14 today... Monica you are a treasure and I Love you very much, Thank You for being the best daughter in the world!!!!

Tuesday, January 13, 2009

Dancing with Blues Clues

Oh yeah Skys feeling much, much, much better!!!!
video

Monday, January 12, 2009

back to independent play (ya)




Well my Sky has returned, he lost some strength over all these crazy illnesses, but is slowly gaining it back (Thank God) Losing strength is the nature of the best we call SMA. SMA kids have a very low reserve, and Im sure if it would of only had been one illness he would of been fine, but he battled 3 in 6 weeks. So were working on getting some movements back. And he is doing pretty good, today he was able to throw ball with me and be up in his green chair and color for over an hour. And he is playing by himself again, this means i dont have to sit and entertain him all day, I am free to do house work and get some cleaning done.




He still has the NG, and will until he is ready to start eating orally again, it could take a few more weeks. patience is a virtue! He has been a major droll monster, were talking rivers of droll. Ive never seen anything like it, but he is pushing it out and just going about whatever it is he is doing, so I would say its not bugging him any.




My Moni turns 14 on friday..... wow 14.... She is having a few friends over to sleep over and party it up. Should be fun, Sky loves all the attention he gets from Monis friends!




So in all, everything is good, and getting better!!!

Friday, January 09, 2009

2009 Could be a year for a cure

Families of Spinal Muscular Atrophy Funded Stem Cell Motor Neuron Replacement Program.
December 30, 2008.

FSMA has invested significant resources in alternative approaches that show promise to cure Spinal Muscular Atrophy rather than just treat the symptoms. In particular, we have invested $1.5 Million to develop a motor neuron replacement therapy for SMA, and we have made significant progress with our investment.

Our initial investment in stem cell research in 2000 funded efficacy studies using motor neurons from mouse stem cells. Results show that this therapy can provide benefit to rodents with motor neuron disease: a highly significant finding. In 2005, additional FSMA funding lead to the first, highly-pure therapeutic population of human motor neurons for cellular replacement therapy for SMA. This program is now progressing on the path to IND in collaboration with the biotech firm California Stem Cell, Inc. (CSC), and leading research centers at University of California-Irvine, and Johns Hopkins University. These motor neurons recently completed a series of critical animal safety studies prior to advancing into human trials for SMA.

Motor neuron replacement is at the leading forefront of current scientific knowledge, and as such is very high risk. However, this approach allows for the possibility of replacing lost motor neurons and so holds great promise for the patients and families in our community.

“FSMA provided the first financial support for my research program investigating the development of high purity human motor neuron populations from stem cells, and their application to animal models of SMA. This work has grown into a multi-tiered program that now involves several funding agencies, an industry collaborator, a clinical collaborator and FDA relations. I will always consider FSMA my partner in pioneering this technology, and moving it towards human use.” Hans S. Keirstead, Ph.D., Associate Professor of Anatomy and Neurobiology, Co-Director of the Sue and Bill Gross Stem Cell Research Center, University of California at Irvine.

Pre-clinical efficacy studies have been completed, demonstrating correct localization of CSC motor neurons in the ventral spinal cord, cell growth from the spinal cord toward the limbs, synapse formation with target muscle and functional reinnervation leading to restoration of limb function in animal models of motor neuron loss.

Results of the Safety Study for SMA Type I Clinical Application:
The pivotal safety study, required to support an application to begin FDA clinical trials, has recently been completed. Although final data analysis is still in progress, there were no negative outcomes of this study, leading to the conclusion that motor neuron replacement will be a safe strategy in the treatment of diseases such as SMA characterized by motor neuron loss.

The purposes of this study were to evaluate the capacity of a motor neuron progenitor cell population to form tumors following transplantation into the spinal cord, to determine whether motor neuron transplantation would induce allodynia (increased pain sensitivity), and to evaluate the biodistribution and potential toxicity of motor neurons transplanted into the spinal cord.
Results showed:
-No mortality attributed to treatment with motor neuron progenitors occurred.
-No tumors occurred that were attributed with the transplanted motor neurons.
-No statistically significant differences occurred between the cell buffer (control) and treatment groups in the clinical allodynia (pain) assessments.
-No toxicological profile differences between control and treatment groups.
-No gross or histologic findings were attributed to the transplantation of CSC motor neurons.

Preparations for Clinical Trial Approval:
“California Stem Cell has developed methods for the manufacture of clinical grade human motor neurons. It is the intent of CSC to gain approval to begin FDA-approved clinical trials for the use of these cells in development of a cell replacement therapy for SMA Type I. CSC is now preparing for a final FDA pre-IND meeting to take place in the first quarter of 2009, keeping us on track for a formal application in the second quarter of 2009 to begin a Phase I/IIA clinical trial in SMA Type 1.” Chris N Airriess, Ph.D., Chief Operating Officer, California Stem Cell, Inc.

Other preparations currently underway include: An external clinical trials coordinator has been engaged and medical community focus groups held to develop the clinical strategy for SMA trials; CSC manufacturing facilities and procedures have been audited for compliance with guidelines for clinical manufacturing.


what this means: our kids who fight SMA each and every day will one day get up and go, play, run, race, jump, get a second chance at life.

Im so excited right now, this means so much to me, to my family and most of to my Sky!!!

Tuesday, January 06, 2009

Saturday, January 03, 2009

What a Diffrence a Day Makes


Skylar has had a wonderful day today, he spent some time up in his red chair, finger painting. Ive been working with his hand strength and control the past few days, he appears to have gotten a little weaker with this illness, but today his range of hand movement is so much better and he was able to paint and draw for almost 45 mins (YA) He is still eating VIA the NG, as he still has some junk at the back of his throat, but he is getting it out and it is getting to be a less each day, so hopefully in a few days it will be gone and he will want to eat and drink and swallow. Thats the last step to this bug he has had, regaining strength and getting the little bit of yuck out. He was even happy today, smiling and talking. It was so nice to see my boy!!! pray that the next few days go well and he continues to do good!!! hugs Sheila