Tuesday, April 4, 2017

Thoughts...

So we have been pretty busy lately.  It seems like Raygen's appointments come in waves.  We can go weeks with nothing then all the sudden I'm driving to Seattle twice a week.  We recently went and saw the developmental specialist and speech therapist at Children's.  It's very interesting to get their perspective on Raygen because they see unique cases all the time.  In our area Raygen is the only child, that I am aware, that has HLHS.  Beyond her heart Raygen has the daily struggles and a big one for us is the communication link.  She is improving everyday, but I want to make sure she always has the tools she needs.  Someday my dream is to have a conversation with her.  To know what things she likes and dislikes.  I can't wait till she is yelling at me because she's mad or just telling me crazy stories because she has a wonderful imagination.  I can see it when she plays.  I believe this is possible. 
The developmental specialist was very please with Raygen's progress.  It has been 6 months since we had our last check up and Raygen has come a long way.  The doctor recommended that I just keep doing what were doing, but she thought I should:

a. Work on feeding more
b. Enroll Raygen in preschool
c. Find a speech/ot therapist
d. Tips on potty training
e. Tips on brushing teeth
f. Find a social environment for Raygen.

I love tips and advice.  Sometimes their tips actually work out and help us conquer milestones, but sometimes I leave an appointment feeling like what ever I do just isn't enough.  I know every parent must feel this way, but it just isn't possible to do EVERYTHING they think I should do.  Unless I quit my job, which isn't a possibility, there is no way I stand a chance. 
We live in a very rural area.  There are more doctors that haven't seen a child with HLHS then there is that have.  Our local hospital, which is 30 minutes away, won't even take Raygen.  Olympia hospitals, an hour away, are also a no so that leaves Tacoma and then Seattle.  So finding a therapist to help a medically challenged child is impossible unless I head North.  There is a possibility I could find someone in Olympia, but that's a big maybe.  Many doctors and therapist are scared of Raygen because of her condition. 
The speech specialist also was impressed with Raygen.  She gave us some great tips on how to use Raygen's Ipad in a more conversation manner then for just "wants" and "needs."
Example: 
Me: "I like this game."
Raygen: "I like this game too."

Compared to:
Raygen: "I want this game." or "I need this game."

It is really hard to explain, but I recommend watching a you tube video on "Language Modeling."  It really puts it all in perspective.

Along with tips on how to use the device she also recommends:
a. Work on feeding more to help the oral muscles.
b. Enroll Raygen in preschool.
c. Find a speech/ot therapist.
d. Find a social environment for Raygen.

Do they forget about GERMS!!! 

Our preschool in our area isn't prepared to handle a medically fragile child like Raygen.  The preschool is not set up for developmental education.  It's nothing against our preschool, but they just are not capable of handling her.  I can't leave her alone there.  She is completely tube fed, she isn't potty trained, could easily choke, and she can't communicate. 

I'd have to be off my rocker to leave her somewhere. 

I just leave doctor appointments deflated.  On one hand I am so extremely proud of Raygen and everything she has accomplished so far, but on the other I am full of self doubt and I struggle if I'm doing everything I can for her.
Let's not forget Raygen has ABA therapy everyday from 8:30 to 11:30am.  So that only leaves the afternoon for other appointments.  Working full time, making time for my daughter Zoie and her barrel races, ABA, and everything else life may throw at me at any given day can really feel overwhelming. 

I don't always know if I do enough, but I do know that I do my best.  I know at some point I have to just know that is okay.  It's okay to not always run on overdrive.  My day starts at 4am and usually ends around 10pm.  I forgot what its like to sit down and watch a movie or read a book.  I wonder if I am the only Mom that goes to bed wondering "Did I do enough?" 
XOXO
Erin&Raygen



15-day Ready. Set. Run. Challenge
I know that my exercise routine really helps me stay sane.  I just signed up for the 15 day Ready. Set. Run. Challenge through IdealFit.  I love running and I am so excited to complete this program. 
Are you in with me?
It's FREE!!!!!