Friday, December 29, 2006

Skylars Dr Apt Today


OK we didnt go... Skylar was to have a regular check up at Childrens this morning. He has been doing so great, I canceled and rescheduled. I did speak with Dr Carter and he had no problem with me canceling, he said Skylar sounds like he is doing great and even gave me permission to increase his time off to 6 hours a day. They were a bit worried about his weight 3 months ago, but not anymore. Skylar is in the 75% tile on the growth charts, he hasnt lost weight but he is slowly gaining, in my book thats good. You dont want an over weight baby with SMA, its hard enough to move as it is... Anyways he is doing great and there are no worries or concerns. I love that I can talk to the docs there and we can change things with out Skylar always having to go in. Its great... So after we get moved I will start working with Sky on his 6 hours off the machine, Im sure he will do incredible...

Sunday, December 24, 2006

Our Christmas

Skylar this morning with his new tiger, Elmo book and Seattle Seahawks jersey... Santa was good to me, but then again Ive been so very good!!!!
Skylar with his new bug rug, and sassy toys... the bug rug is so cool, it sings and counts and plays music...

Miss Monica with her surprise gift from mom and dad... she wasnt expecting a PSP....


Chandler with his PSP.. he was hoping.. and as you can see his hopes came true... man you guys have some pretty nice parents....



Skylar right after opening his bug rug... I think he likes it :)




I know its on Christmas Eve, but in our house we have to do things earlier... Monica is already down at her dads celebrating there Christmas traditions and Chandler is with his mom doing her traditions. So we always start on the 22nd or the 23rd, that way the kids can at least enjoy there gifts for a little while before they have to go to there other parents. In all it was a great Christmas... Dad (Keith) he even got a PSP, and man was he HAPPY!!!! We hope your Holidays will be as memorable as ours... Merry Christmas

Friday, December 22, 2006

All My Kid-os This Christmas

I LOVE this... there is nothing better then haven my little man fall asleep in my arms!!!






Coffee Anyone?







Sunday, December 17, 2006

Sitting Up


Ok my goal for Skylar was to have him sitting up like he did before he got sick in March. Well he is doing it.... Its not 100%, but he is working on it. Its been a long slow road, but this picture should show you his progress. My knee is resting slightly on his back as were are sitting on the couch. I will continue to work with him and who knows maybe in a month or two it will be 100%!!!

Saturday, December 16, 2006

Refelection

Look at that smile, he is such a happy kid-o.
I love eating my hands, side time is fun I can find them easier

Ahh a new toy, a star and rings...hmmm let me see how it tastes


yeah its plastic




Friday, December 15, 2006

Skylar Said I Love You

I was so excited yesterday afternoon, Ive been working with Skylar on a few signs... And yesterday he said I Love You.. He touched his eye, placed his hand on his chest and then touched my arm. And then gave me a BIG smile! Well I cried of course, there is nothing more wonderful then hearing or in this case seeing you child say I Love You :)

He also has learned more, he brings his fingers to his lips and moves them back and fourth.Skylar is doing great with his strength, he has become allot more vocal the past few weeks, constantly babbling, and every once in a while throwing out a word or two. I Love it, its been so long not hearing his beautiful voice, and now he has found it again.

He has also remembered how to raspberry.... It is hilarious to see him raspberry. And he is becoming a great mimicker, what ever you do he is going to try it, and 80% of the time he does it.

Last night we had our BIG wind storm and lost the lights, but I got Skylar on all his portable equipment and he was a happy little man playing with his light up fish mobile. Daddy came home early to get everything in the house switched over to the generator, and low and be hold as soon as he was done the power was back on. Figures!

We are all doing well, and getting very excited for Christmas with our family and friends... The older kids Moni and Chan gaze the tree every day to see if mom has placed any new gifts under it... And let me tell you they know, even if its something little...We hope you are all doing well and that you have a bright and beautiful Holiday and a very Merry New Year.

Thursday, December 14, 2006

Tuesday, December 12, 2006

Our Christmas Baby




Skylar is so cute, he had so much fun wearing mommys Christmas hat this morning, he kept trying to get the big ball of white in his mouth.

Monday, December 11, 2006

I LOVE To Go Bye-Bye




It was a rainey morning, but I didnt care... I Love when mom takes me with in the morning to drop Moni and Chan off at school....



Saturday, December 09, 2006

Decorating For Christmas

Its a little dark but Skylar was putting his ornament on the tree.
Moni and Chan decorating the tree....

Skys all dressed up in lights...he loved the rope lights!!!!

I Love this picture the soft glow of the lights and the look on Skys face, he was pretty amazed with this rope light....





Friday, December 08, 2006

Christmas Wish Is Being Answered

Im hidding in the bows and paper, shhh it was sissys idea to make me a present!

I found out today that Skylar is on the list to do the trial at Stanford in a few months. I was told he couldnt be on the trail if still on the V-Pap. Well that was incorrect, because there are TY I children doing the trail now that are on Bi-Pap at night. So we are on track, I will keep working with Skylar and his time off, and who knows maybe he will be off the V-Pap by the time the trial starts. So my wish for him is starting to fall into place, there is always hope!!!

Thursday, December 07, 2006

My Emotional Christmas Wish

My wish for Christmas this year isnt for me, or for gifts of plenty... Put its for my darling little man Skylar... I see him each and every day improve his movements, slight yes but improved. I see the look on his face when he places a ball in both hands and twirls it around, the amazement the fun. I know he knows no different then now, but my wish and prayer this Holiday Season is for my baby boy. There are miracles everyday, I pray and wish his miracle to come true. To be that little boy I see inside him, the one who wants to move around freely on his own and explore and play. I would give anything and everything for there to be a cure for his SMA, I would give anything and everything for my son... But until he receives his miracle I will love him daily, I will encourage him and help him to learn and develop, I will always be at his side... Skylar someday you'll be able to read this and I want you to know your Mommy Loves You So Very Much!!!! You are amazing!!!!!!


Information I just got from a friend who is caring for her Grand daughter with SMA TY I.

CLINICAL MANAGEMENT
Chang et al. (2001) reported results suggesting that sodium butyrate may be helpful in the treatment of SMA. They found that this agent increased the amount of exon 7-containing SMN protein in lymphoid cell lines from SMA patients by changing the alternative splicing pattern of exon 7 in the SMN2 gene. Oral administration of sodium butyrate to intercrosses of heterozygous pregnant knockout-transgenic SMA-like mice decreased the birth rate of severe types of SMA-like mice, and SMA symptoms were ameliorated for all 3 types of SMA-like mice.


Brichta et al. (2003) showed that in fibroblast cultures derived from SMA patients treated with therapeutic doses of valproic acid, the level of full-length SMN2 mRNA/protein increased 2- to 4-fold. This upregulation of SMN was most likely attributable to increased levels of HTRA2-beta-1 (see 606441) as well as to SMN gene transcription activation. Valproic acid was also able to increase SMN protein levels through transcription activation in organotypic hippocampal rat brain slices. Additionally, valproic acid increased the expression of other serine-arginine (SR) family proteins, which may have important implications for other disorders affected by alternative splicing.


In fibroblast cultures from patients with SMA I, SMA II, or SMA III, Andreassi et al. (2004) found a significant increase in SMN2 gene expression (increase in SMN2 transcripts of 50 to 160% in SMA1, and of 80 to 400% in SMA2 and SMA3) and a more moderate increase in SMN protein expression in response to treatment with 4-phenylbutyrate (PBA). PBA treatment also resulted in an increase in the number of SMN-containing nuclear structures (GEMS). The authors suggested a potential use for PBA in treatment of various types of SMA.


Grzeschik et al. (2005) reported that cultured lymphocytes from patients with SMA showed increased production of the full-length SMN mRNA and protein in response to treatment with hydroxyurea. The findings suggested that hydroxyurea promoted inclusion of exon 7 during SMN2 transcription.

Tuesday, December 05, 2006

Getting Skylar Ready For Christmas

Mama has been putting my toys in boxes and wrapping them up with shinny paper, ribbons and bows. At first I wasnt to sure about it, but I like the ribbons and bows alot! Its kind of hard to get the paper off, but I can do it with a little help from my sissy... Mommy keeps telling me about all the packages that will be under the tree, and the decorations and lights. I cant wait to see them, I think I might really like them this year! And she has been telling me all about Santa and how he fills our stockings and leaves us gift on Christmas morning. I don’t know about you, but I don’t think he will be able to get much in my sock. And she keeps saying Ho Ho Ho, I think shes lost it, but I Love her so I just keep smiling….
Give me the ribbons and bows, please I like to pull them way out and watch then roll back up.

This is me just being silly!!!




Saturday, December 02, 2006

New Pictures







I just adore his smile.... There is nothing better in the world... He is my precious little man!!!



Thursday, November 30, 2006

GoodSearch.com

If Skylar and I could ask a BIG favor of everyone who reads this, please log on to www.GoodSearch.com This is a new search engine set up by FSMA (Family’s of SMA) every time someone anyone uses this search engine powered by Yahoo one penny is donated to SMA research to find a cure.

This is a simple FAST way you could HELP so many! A penny dosent seem like a lot, but if you tell someone and they tell someone, eventually that penny is thousands and more.

So PLEASE help us find a cure for SMA, and log on to www.GoodSearch.com

Thank You and God BlessSkylar and Family

Tuesday, November 28, 2006

Clear, Beautiful and Cold

We woke up this morning to a beautiful day, blue skies, snow covered trees and ice cycles hanging around the house. But it is so cold out, that Im not sure if the bigger kids will even be out in it today. Its now 10:30 and it is only 17 degrees outside. Anyways I hope you will enjoy this picture taken earlier this morning.

Monday, November 27, 2006

SNOW SNOW and MORE SNOW

Sky and his Blues Clues Chan after rolling in the snow

Moni shoveling snow (and 10 min later you couldnt even tell she did it)


The trees behind our house
WOW we have been hit hard with this lovely batch of winter weather, it has been snowing non stop since yesterday. We have a good 9 to 10 inches and they say we should look for 3 to 6 more... The big kids are enjoying it ALOT!!! Snowmen and snowball fights, they even got dad to pull them around on a sleigh. Skylar is happy as can be inside nice an warm with mommy, and all of our fun toys. The craziest part of all this was losing power for 5 hours this morning, boy can your house lose heat fast, we went from 74 to 67 in 4 hours. It was a bit nuts setting up all the battery powered equipment for mister Skylar, but we did it and we are all good!!! Scared dad a little so he ran out in the bluster and bought a generator... YEAH!!!! No when the lights go out, it wont effect Skylar and we still get to keep the TV and that means Spongebob!




Sunday, November 26, 2006

Covered With Snow











It was a wonderful Thanksgiving for us at home with all the kids, we all ate like pigs.... Skylar enjoyed his turkey, mashed tatoes and gravy and cranberries. The excitement for the day is SNOW!!! And lots of it, it started around 1:00 and its still coming down....









Saturday, November 25, 2006

The Coolest Chair Ever




I found this chair on line today, and showed Keith and he agreed we had to have it for Sky, so off he ran to Target. This isnt a bouncy seat, but a rocker... It is so cool and Skylar just loves it!!!

Thursday, November 23, 2006

Thanksgiving 2006

Grandpa Ernie Great Grandma Frieda Sheila and SkylarGreat Grandma Freida Sheila and Skylar
Skylar and Auntie Kristin


Skylar all dressed up!!!

We had a wonderful Thanksgiving in Seattle with Sheilas dad Ernie and his wife Joyce. We visited with Kristin and Josh and Great Grandma Frieda. The food was wonderful and so was the company. The only thing missing was our Moni and Chan :(.... Sunday we will be together and have our very own Thanksgiving feast!!!!