Disappointing swallow study

One short 20 minute test can sure cast a shadow over this sunny day. A good nights rest in our own beds after the long weekend at the cabin Colbey Raye and I both woke up refreshed! And I was excited for this Seattle visit because I was feeing confident that Colbey Raye would pass her swallow study! I was working on a completely different blog post as I waited outside the X-Ray room for Colbey Raye. That post will be saved for another day…
Colbey Raye did not pass her swallow study 😢. I know of all things this makes me sad, but I was so hopeful that she would pass no problem! But she actually did worse this time around than she did right after surgery. She was only aspirating with fatigue during her first swallow study, but today she began silent aspirating right away with the thing liquids, and even aspirated with half thickened liquids. So, no progress here with her liquid swallowing, but all other solid type foods she’s free to have! I’m feeling bad, as I was so hopeful and sure she would pass that I’ve given her sips here and there of things I’m drinking, and she’s had ice cream and un thickened medicine once or twice. I will not be doing that again until we have a green light to do so!! We have ordered more thickener and will have to order even more in a month or so to get her through until her next swallow study (2-3months), and for some reason our insurance will not cover “dietary” needs. Lovely I know, as we are using it for a huge medical reason, not just by choice. But the insurance company doesn’t care the reason for why it’s needed.
On a better note Colbey Raye is doing really well, she’s over the sicknesses, and is back to her healthy self. I do feel as though she has hit a little bit of a wall in her developmental jumps. She had been progressing so well and moving forward, but since she has been sick she has taken a break from learning new things and has resorted to screaming at me for anything the wants! She has not been using her signs as much, and she has no desire to learn new ones, such as please and thank you. She has learned how to verbally say “sister” though!! And boy is Austyn Jayne happy about that 😊. Her lack in communication ability is getting a little bit stressful for me. I am having a hard time with the constant squawking and yelling at all of us to get our attention or let us know she wants something or is unhappy sitting alone. But I am at a loss for how to approach it, and how to explain to her that it’s not okay to scream at us all the time for what she wants. She does not get it! But we are working really hard with her on it!
Colbey Raye has began to use her right leg a little more here and there, and is getting really good at bearing weight on her right leg while we practice her standing! A couple of weeks ago I began to notice a huge lack in her leg movement, and once I mentioned it to her therapists, the very next week Colbey Raye began to show off and move it a lot more! She wants to crawl so bad, but that right arm just is not getting the memo. She may just skip crawling all together and eventually just walk! I would not be surprised one bit if that’s the route she takes. Her arm has been moving a lot more to help with balance, but her strength is really lacking and she is still unable to bear weight. We are working really hard with her to be comfortable on her hands and knees to try and strengthen her right arm, but after about 20 seconds of weight bearing she just can’t do it any more. And this is forced weight bearing, she cannot push herself up at all unless she has help and support to get her into that position.
She is still my little side kick! Attached to the hip, literally! And wants mamma to hold her all the time. Her little scrawny self is becoming harder and harder for me to tote around. I love my hip hugger and I do love having her in my arms, but as the new baby grows in my belly it becomes harder and harder to carry the growing baby that is outside my belly!
Strength, dedication, persistence, are all things I’m praying to have through this time as we work on meeting goals and surpassing them. Time is our friend, and I’m thankful we have time to spend working towards a stronger Colbey Raye together. Even though I feel like time runs away from me daily I know there is always tomorrow, and we will pick up where we left off to face another day head on. How ever far off the goals may seem, each day bring us closer to achieving them.

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