I have been telling myself that I need to post for weeks now. Every time I would go to post I would think of something coming up that I wanted to wait to put in the details. The next thing I knew it has been nearly a month since my last post. Time just keeps getting away from me.
Casey is doing well. She has had off and on yucks over the past month (along with everyone else in town). The weather has been crazy. It is freezing one day then in the 80’s the next, back and forth back and forth. This weather is heck on any one’s respiratory system. Add all of Casey’s complications and I am sure you can imagine how rough this past month has been. She has not been running a fever or anything to make us think anything serious is going on. She has just been real junky and needing a lot of suctioning. Hopefully this weather will decide one way or another and let her get back to normal soon.
Casey has really caught on to using her switch. We have been working with her to teach her how to use it as a communications tool. One example is that we will show her a series of objects and tell her when she sees the red one to turn on her light. She was doing about 70% right. She is getting there. Tim and I have been looking into getting her a switch of her own and some specially adapted toys to go with it. The one we have now is the school’s and if they need it they may have to take it back at any time.
We recently increased our nursing hours to 32 a week (4- 8 hour days). It is really great to have someone here to help with all of Casey’s therapies, doctor appointments, etc. I am able to get so much done. Casey really likes her too. They play a lot. Casey loves to fly and so Maritza takes her all over the house to fly.
I was looking at our calendar earlier today. Between the 3 of us we have at least 1 doctor appointment every week through all of February and March. It always works out like this. We will have a few quiet weeks, then nonstop appointments. These (for all of us) are all routine types of appointments. Nothing to worry about, just busy busy.
Last week Casey had an ortho appointment. She has grown so much I worried that her AFO’s were too small. Insurance does not factor age into things. Basically it doesn’t matter the situation, covered equipment can only be purchased every 3 years. So even though Casey is a baby and they are known to grow a lot in much less than 3 years our insurance will only get her 1 pair every 3 years. I was really not looking forward to having to buy those right now. I was happy to hear that she has at least 6 more months in these. Yeah!!!!
Ortho took some XRays of Casey’s hips and spine. Her hips looks pretty much exactly the same. This is actually a good thing. Her hips are both out of socket, but they are equal and balanced. Also, the location of the bone is in a fatty part of her rear so it should not be causing her pain. Her spine is a little curved (as to be expected) but not twisted. With the way Casey sits and lays there is not a lot we can do to avoid spine issues 100%. We do everything we can to minimize them. Her doctors keep an eye on things and hopefully we won’t have to do anything major anytime soon (or ever if we can get her core strength built up).
I talked with the place I was looking to do water therapy last week before her ortho appointment. They said that I need to start by talking with her doctors and get an Rx. That makes sense; I should have known. So anyway, we did speak with her ortho about this while we were there. He agreed that it sounds like a good idea. He also told us that there is a water therapy pool there at the hospital she already uses. Rather than driving to Round Rock we are going to just get her set up at Dell. They have to work us in to the schedule. I hope that they call soon. I really think Casey is going to love it. I will be sure we take lots of pics when we go.
We took Casey to see her neurologist yesterday. This appointment went well. I wish I had taken the camera. In the car on the way there Casey was being so funny. She turned to face the window then she slowly tucked her down onto her arm propped up on her arm rest. Every time that her nurse would pick her back up she would go right back down. After about 5 tries to get her up Maritza let Casey lay there to see what she would do. Casey just closed her eyes and went to sleep. She has never done that before. It was really cute. After we got to the clinic Casey was all over the place. She was in her chair and just turning back and forth. We finally made our way back to the patient room and Casey went to sleep while we waited to see the doctor. When the doctor came in she had to move Casey’s legs and stuff so it of course woke her up. She was really not happy to be woken that way. Overall it was a basic appointment. I was thinking Casey had her EEG in March last year but it was actually May. We went ahead and scheduled this years to be done in June.
Tomorrow is a busy day. We have the initial review/assessment with the school district. At the same time her new speech therapist will be here to meet and see Casey work with her current one. It will be a busy day. Once the assessment is complete the rest of the therapists will start to set up shadow times.
I went to Houston this past weekend for my mom’s annual 39th birthday. It was nice. My grandparents went with me and we met my sisters and my sister’s little boy (Riley) as well as my mom, John and John’s son and girlfriend at my mom and John’s house. It was a nice day. Tim has been really busy with work. I think that is about it for now. I will do better next time. I promise I won’t wait another month before my next post. As always, we hope you are all doing well.