Oh my- where do I begin...?!?
I guess I wanted you to know that
I guess I wanted you to know that
August is SMA Awareness Month.
This means- the SMA families and those around us are doing lots of things trying to get information out about SMA as far and wide as we can get it.
In fact:
I am taking questions right now.
If you have ANYTHING you want to know about SMA, our lives with SMA, what we do to face each day
and obstacle in our way-
PLEASE ASK AWAY!
PLEASE ASK AWAY!
There is not a "wrong" question and no question "too personal". We are open to sharing our journey and our story, so others can better understand our lives and our little journey.
I will take each of your questions and then openly answer them as best I can.
I look forward to hearing what you are wondering about!
To give a kick start: I want to tell you about the 3 types of SMA. (this info is from Ella's Wall)
SMA Type 1 Symptoms-
Type 1 children are diagnosed usually before 6months of age, more often before 3 months of are. Symptoms may even start in the womb. Many mother later recall the baby not moving as much as the last moth or so of pregnancy. They are not able to hold up their heads, roll over, crawl, sit up without support, or walk. All of their muscles are extremely weak, with the weakest muscles being the legs, upper arms, and neck. Their chest may appear concave or very skinny at the top, with a big belly. Bell-shaped. SMA affects all muscle systems as well including sucking, swallowing, digesting food and excretion. Constipation is a common problems as is being able to control excessive drooling (secretions) and getting proper nutrition and calories for proper weight gain.
One of the biggest symptoms for SMA type 1 is a quivering tongue. Ella's tongue always does little quivers. It is the only disease that this is present.
To give a kick start: I want to tell you about the 3 types of SMA. (this info is from Ella's Wall)
SMA Type 1 Symptoms-
Type 1 children are diagnosed usually before 6months of age, more often before 3 months of are. Symptoms may even start in the womb. Many mother later recall the baby not moving as much as the last moth or so of pregnancy. They are not able to hold up their heads, roll over, crawl, sit up without support, or walk. All of their muscles are extremely weak, with the weakest muscles being the legs, upper arms, and neck. Their chest may appear concave or very skinny at the top, with a big belly. Bell-shaped. SMA affects all muscle systems as well including sucking, swallowing, digesting food and excretion. Constipation is a common problems as is being able to control excessive drooling (secretions) and getting proper nutrition and calories for proper weight gain.
One of the biggest symptoms for SMA type 1 is a quivering tongue. Ella's tongue always does little quivers. It is the only disease that this is present.
SMA Type 2 symptoms~
These children are usually able to be in a sitting position without support, but often can not get there by themselves. They can sometimes crawl with bracing and therapy and on occasion may stand with braces. They will usually never walk. (Denalli was able to take 7 independent steps at one time while Ryka can not stand or bear weight at all by her-self) Feeding and swallowing problems are not common in Type 2 children, though they are still possible. The lifespan of a Type 2 child varies so widely, there isn't one! They could pass away at an early at, or they could live well into adult hood. As with all forms of SMA, weakness increases over time.
SMA Type 3 Symptoms~
In the beginning theses children are able to stand and walk but usually have difficulty doing so. They typically have a normal lifespan, however as with all forms of SMA weakness gets progressively worse and they usually will be wheelchair bound.
So- Now you know!! :)
Now- please ask some more questions so I can tell you more!! :)
Next- I REALLY wanted you to know-
TOMORROW IS DENALLI'S 7TH BIRTHDAY!!!
TOMORROW IS DENALLI'S 7TH BIRTHDAY!!!
I still can't believe it my-self...
She has grown into such a little lady with such a BIG personality.
Along with it being her birthday-
it will also be the day that one of Our dreams come true...
Tomorrow will be the day Denalli competes in her first
RODEO QUEEN competition!!!!
She will be competing for the
Faith Stock Show and Rodeo Princess title!!!
Awesome, Right?!?!
On the day she was born- I started dreaming of the day she would ride a horse around the Rodeo Arena and wave to the crowd...
Sad to say, but that dream was sort of muted-
the day she was diagnosed with SMA...
But, then- a couple of days ago- it was brought out of the dark and is now becoming a reality!!
Since riding a horse for the title is a MAJOR deal-
How is this made possible?!?
The coordinator of the competition is going to allow me to sit behind Denalli- while she rides through the horsemanship competition.
Denalli will be in control of our trusty ol' steed, and I will sit behind her to be her "seatbelt"...
I AM ECSTATIC!
And SO IS DENALLI!
Denalli will also be modeling an outfit and completing an interview with the Judges...
Denalli will also be modeling an outfit and completing an interview with the Judges...
Dallie Jo is also competing for the same title. She is equally as excited and ready to go do her horsemanship pattern and queen wave around the arena.
oh- and she has her little modeling walk down pat. :)
It is gonna be a FANTABULOUS day....
Then after all the emotions and happy tears have been cried-
We will enjoy the rest of the day and take in the nightly rodeo, and top it off with a live band and country dancing....
We are so blessed to live where we do...
I can't wait to share pictures and videos of tomorrows adventures.
There is also some more Fantabulous news
that will be "rolling" in soon....
But- it's late and tomorrow is a BIG day...
~HUGS~
~HUGS~
One BLESSED mommie
