Discharge in the works!

While we are waiting for all the paper work to go through, and medications to be filled I decided to take the last few “free” moments I have to post a quick, if I can even do quick, update on Colbey Raye and the plan for now! We have hit a few road blocks on our outpatient therapy options, due to our uncooperative insurance company we are not approved for Rehab Without Walls 😢, so Colbey Raye will have to go to an outpatient facility for therapy 4-5days a week. This is going to be taxing on mommy and Colbey Raye but I know it is well worth it and so needed to help miss Raye get back to baseline and even surpass her previous baseline! We will continue PT and OT but now we will be doing both 2x per week! Plus we will be adding on speech and eating therapy 2x per week. This is a massive amount of therapy, and time for such a tiny easily tuckered out little girl to concur but we love our current therapists and they know her stamina level so I am not worried, they will listen to Colbey Raye’s “I’m done” cues and are flexible with her tired points. The speech therapist we have been working with while in hospital is very impressed with Colbey Rayes progress and has deemed her “every speech therapists dream” so I see her doing well in this area of therapy once we are home :). She has started saying “hi” already, this is brand new post op! She never said hi prior to this surgery, and she says hi as she waves! She is also signing “all done” when she is finished eating or drinking! This is also new and wonderful as it helps us keep Colbey from aspirating or eating to much and then throwing up. She is currently on a strictly purée diet, along with thickened liquids, as she had microscopic aspirations with the normal liquids. This is due to the right sided facial weakness she’s had post op. We will have a repeat swallow study in a few weeks to asses and see if she can start having solids and thin liquids again, but I’m just happy that we do not have to go home with an NG tube in place!! As for PT and OT in hospital Colbey Raye has not been as cooperative. They have come and tried to work with her but miss stubborn and independent Colbey Raye did not like being touched Andy forced to do things she did not want to do. She has been throwing her head backwards if we try to make her sit, she just wants to rest, and she has been getting very upset when we try to have her use her right arm. She has tolerated us moving her right leg around just fine though! My hope is that once we are home, in her comfort zone she will be more willing to work with the familiar faces at St. Peter’s outpatient therapy! She loves her therapists there and knows them, so I’m feeling hopeful!
Colbey Raye will remain on the same doses of seizure meds she was on pre surgery, these doses will not be adjusted for some time to make sure the seizures are well controlled. We will be having an abundant amount of post op appointments coming up, such as a follow us with rehab, nutrition, another swallow study, opthamology, neurology, neurosurgery, neuropsychology and probably a few I’m forgetting! Life is going to be VERY busy, busy, busy for a while!
This little girl is so determined, so smart, and has such a great desire to be independent that I know she will start making huge leaps soon. She is the most courageous, inspiring little miss, and I’ve learned so much from her strength! I also wanted to share a link with everyone reading the blog, it’s for a fundraiser run for Colbey Raye! With all of the missed work, medical stuff, trips/gas to Seattle and the fact that Colbey Raye will be needing massive amounts of therapies and our insurance only covers 20 visits (these will be up in just 2 months with the amount Colbey Raye is going to require) finances are tight and this run will help so much! Check out the details at
https://www.facebook.com/events/1429715317297615/
And also my cousin will be hosting a lemonade stand in honor of Colbey Raye! This will be taking place June 19th at Spurgeon Creek daycare. We are so ready to be heading home after a long 2 week stay at Children’s! And are beyond blessed by all the help and support we have had while here. Thank you to everyone who has helped!

20140604-145706-53826082.jpg

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s