Blog

Posts tagged with: Sma Tips

Acts of Kindness: LifeCare Solutions

July 17, 2009 by Bill Strong
We'd like to thank our home healthcare provider, LifeCare Solutions, for being unbelievably proactively supportive of our cross-country RV trip with Gwendolyn. One of our biggest concerns and stresses about this trip was Gwendolyn's machines and supplies. What would happen if we were in the middle...
Read More >>

Making the Band…

June 20, 2009 by Bill Strong

Gramma and Gwendolyn playing the xylophone while simultaneously going off on the "touch drums" - with a little singing thrown in for melody. Quite a unique musical genre smile
Read More >>

Girls Weekend

June 15, 2009 by Victoria Strong
We had a big weekend! For the first time since Gwendolyn's SMA diagnosis, it was just us girls. It was Nick's bachelor party (Bill's best friend) and Bill really wanted to be there. So over the last few months we have been talking about Bill going away and I have encouraged him that I would be...
Read More >>

Gwendolyn Rocking Out!

June 10, 2009 by Victoria Strong

Gwendolyn is really getting the hang of presents! After being a bit fussy with Mom and Dad (teething!), we asked if she would like to open a present from Great Uncle John and Great Aunty Clare. Her grumpy fussy sound immediately stopped as she eyed the pretty package and a smile (that was nowhere...
Read More >>

New Fun Toy and a Pair of Pink Crocs!

May 30, 2009 by Bill Strong
Gramma brought a fun new toy that Gwendolyn enjoyed playing with her last week. Gwendolyn loved choosing which color wooden "nail" to take on next and having Gramma help her pound, pound, pound them with the hammer. You can tell she really liked the feel of the impact of the hammer and the noise...
Read More >>

Gwendolyn Playing Underneath Her Apparatus

May 16, 2009 by Bill Strong

Gwendolyn has really been enjoying playing with various toys attached to her PVC apparatus recently. Her shoulder and arm mobility isn't as strong as it used to be, so we're using ace bandages to create a "sling" that holds her lower and upper arm in a position that allows her to more easily...
Read More >>

Gwendolyn Conquering the Stander!!!

April 06, 2009 by Bill Strong


We are so proud of our little girl. You may remember a post Victoria did back in November 2008 about the debacle we had with the first attempt in the stander. In short, it was a disaster. Well, over the last couple of weeks at our weekly CCS therapy appointments we've been re-introducing Gwendolyn...
Read More >>

Stacking blocks, knocking them down…

March 28, 2009 by Bill Strong

Gwendolyn loving playing with Gramma; stacking some generations old wooden blocks and knocking them down. She loves the knocking down part the most smile
Read More >>

The marshmallow game

March 27, 2009 by Bill Strong


Gwendolyn loved the game Gramma brought with her this week. It was simple...stack a bunch of marshmallows and knock them down. The marshmallows were a great idea; small enough and light enough for Gwendolyn to hold on to. Although Gwendolyn loved the stacking and knocking down, her favorite was...
Read More >>

Shaving Cream Painting

March 24, 2009 by Victoria Strong

Gwendolyn gets to do all sorts of fun things with her awesome therapists. They bring so many new toys, books, and ideas. She absolutely loves her time with them and wants Mommy to shoo the second she sees her pals. The picture is from a day that they brought shaving cream and she got to try "Cloud...
Read More >>

Wagon Ride

March 22, 2009 by Victoria Strong
With the nice weather we have been enjoying wagon rides in the back yard. Gwendolyn loves this. The wagon was kindly given to us by Families of SMA right after Gwendolyn's diagnosis and we initially used it as our only mode of transport -- you can see it keeps her nice and flat. But, now it is a...
Read More >>

Miralax did the trick (ahhhh!)

March 20, 2009 by Bill Strong
Thank you to everyone for all of your helpful suggestions and concerns yesterday. We really appreciate all of it.

After speaking with our pediatrician we decided to step it up a notch. We gave her 1/2 cap of Miralax in the afternoon mixed with her normal 100mL feed and added an additional 100mL of...
Read More >>

VIDEO: Gwendolyn playing the monkey game

March 14, 2009 by Bill Strong
Thanks to our friend Laurian, "Monkeying Around" has become one of Gwendolyn's favorite games. She loves helping us hang the monkeys on the tree, one by one, in anticipation of which monkey will send the tree canopy crashing down. She giggles through the whole thing.

Read More >>

Our SMA Resources

March 13, 2009 by Bill Strong
It's no secret that one of our biggest frustrations since Gwendolyn's diagnosis has been navigating the muddy resource waters. What do we need? What do we qualify for? What do others use? How do we go about getting help? In our experience, the resources - government, national, and local - exist,...
Read More >>

VIDEO: Gwendolyn's Computer Time

March 05, 2009 by Bill Strong
Last week Gwendolyn had a technology assessment with the Central Coast Assistive Technology Center (CCATC). Given Gwendolyn's thirst for new experiences, we are hopeful that technology will unlock a wealth of independent learning, playing, and communicating opportunities for her -- she's definitely...
Read More >>

G-tube infected; back on Keflex

February 16, 2009 by Bill Strong
Several days ago, after we changed Gwendolyn's g-tube, we started
noticing the early signs of an infection around her g-tube site - most
importantly is that it is extremely sensitive to the touch for her :
( So, today we started her on an antibiotic called Keflex. She took
Keflex for a similar...
Read More >>

VIDEO: Gwendolyn playing independently

February 10, 2009 by Bill Strong
Read More >>

Medi-Cal APPROVED!!!

February 05, 2009 by Bill Strong
Great news!!! We received a letter from Medi-Cal on Friday informing us that Gwendolyn has been approved for services under the Department of Developmental Services Waiver Program (we've also heard it referred to as the model waivers program). This program, which does not take into account income...
Read More >>

Fun with Aunt Kristen, Gramma, and pipe cleaners

January 22, 2009 by Bill Strong


On Tuesday, my sister (Aunt Kristen) and my mom (Gramma) came up for the day. We had fun watching the historical Obama inauguration together, catching up, taking a walk, and playing with the colorful pipe cleaners that Gramma brought to play with Gwendolyn. We made a butterfly, a bracelet, a...
Read More >>

Sticker art with Gramma

January 14, 2009 by Bill Strong

Today, Gwendolyn had a blast with Gramma -- especially the sticker art project Gramma brought to do together. It was great to watch Gramma give Gwendolyn options of two stickers -- little flowers, ladybugs, and other animals -- and have Gwendolyn clearly choose which one she
wanted to go on the big...
Read More >>

Popular Posts

Tags

Archive

2017
October (3)
September (1)
April (1)
March (1)
January (2)
2016
December (1)
November (1)
October (1)
September (2)
August (2)
July (1)
June (1)
May (1)
April (2)
February (2)
January (4)
2015
December (2)
November (1)
October (2)
September (2)
August (4)
July (3)
June (2)
May (1)
April (2)
January (4)
2014
November (3)
October (3)
September (3)
August (3)
July (3)
May (1)
April (1)
March (5)
February (2)
January (2)
2013
December (2)
November (3)
October (3)
September (3)
August (4)
July (2)
June (4)
May (3)
April (4)
March (3)
February (5)
January (5)
2012
December (3)
November (8)
October (4)
September (5)
August (8)
July (7)
June (8)
May (8)
April (9)
March (7)
February (9)
January (9)
2011
December (9)
November (16)
October (15)
September (14)
August (15)
July (16)
June (13)
May (27)
April (22)
March (21)
February (20)
January (21)
2010
December (19)
November (22)
October (16)
September (23)
August (23)
July (27)
June (24)
May (24)
April (21)
March (26)
February (19)
January (24)
2009
December (21)
November (20)
October (31)
September (25)
August (25)
July (47)
June (44)
May (34)
April (27)
March (35)
February (35)
January (35)
2008
December (37)
November (22)
October (31)
September (20)
August (30)
July (27)
June (18)
May (5)
April (6)
March (3)
February (1)
January (2)
2007
December (7)
October (1)