Made of Gray

Good Things

Holly D Gray8 Comments
There has been a ton of stuff going on lately. So I thought I would make a list and try to compile my thoughts.

MARpchair3
  • We had an allergist appointment this week. It went from bad to terrible really quick. We waited an hour and a half to be seen. While waiting we overheard the nurse outside canceling the rest of the day's appointments. Never a good sign. Then the nurse practitioner walks in and has a scared look on her face. She says she doesn't "do" pediatrics. Mind you this isn't a pedi office, but there isn't one, or we would be there. So we are there to find out if there is an allergy medicine, without, lactose that Caleigh can take when her nasal spray isn't doing the trick alone. The women tells us that our pharmacist can figure that out for us..... Really? There isn't a super doctor database that can tell you? No, I have to go to the non-doctor to get medicine for my child. So then she asked us "how do you know she is having allergies?" I tell her teeth grinding, not sleeping well,drainage followed by trouble swallowing because of the drainage, constant sneezing.
No kidding, the women looks at me and says:
"Does she have cerebral palsy?"
I said yes.
{in hindsight I should have said no}
Then she precedes to explain, to the parents of a child that has had CP her entire life, that "children with cerebral palsy have more drainage and have trouble swallowing."

Eric and I just stared at her.
Did that just happen?
The room was silent as we gave her the death stare.
I was too dumbfounded to even respond. The whole statement really caught me off guard. I then said, "I guess I'll just have to call my pharmacist then."

We packed up our things and checked out. She wanted us to come back in 3 months. Nope, that won't be happening. Why? Because her bedside manor stunk, she treated Eric and I like we were stupid and didn't know our daughter, and she has NO CLUE what is in the medication she is handing out on a daily basis. The real kicker was that Caleigh sat there telling the woman "Hi" and everything else she could say to try and get her attention, and the lady didn't respond once.

So tomorrow I will call our pharmacist. Hopefully he will be able to give us some insight, and shockingly enough, we don't have to pay him for it.

MARpchair
{pretty much the look we gave the nurse practitioner}

{On to happier news}
  • Our long time, wonderful PT nominated us for her therapy company's charity. The charity just so happens to be giving a van lift. We are just in the running at this point. Last week a rep from a local mobility company came out and we narrowed down what our needs are. He'll report back to the charity and then we will find out if we are accepted. We didn't really go with the standard ramp type situation. So it will be interesting to see what they think. We will be required to pay 10% of the total cost which is actually a bargain. No complaining here. So we'll see what happens and hopefully we will know something before our road trip in July.
  • Caleigh was approved for a Make-A-Wish earlier this month. Last week the volunteers came out to hear her wish. We signed lots of release forms and it was pretty uneventful. Caleigh did a great job telling the volunteers what her wish is using her iPad. We have been talking to her about wishes since we started the process. She's really excited about the whole thing. Now we just wait for the next step. I'll leave her wish a surprise for now.
MARpchair2
  • Here's a tiny video cut down from 10 minutes of Q&A. Caleigh has been doing mind boggling things with math. Addition. Subtraction. Extremely quick responses. I didn't teach her this. I have no clue how she knows 15 minus 4. Her dystonia movements make it a little difficult, but she is really quite amazing at it. Eric and I are really proud of our girl.

  • Since the discovery of Caleigh's new mathematic skills our preschool curriculum seems a little "young." Throughout the day we work on kindergarten sight words and math problems and basically learn about life. She knows how to piece words together and can tell you what letter a word starts with. We go new places and talk about them. She has a longer than average attention span. I really need to get back on track but it's been two months off now. I keep having flash backs to several books and movies I've been exposed to over the past 3 years. The scene of someone holding up the flashcard of the letter A and saying A is for apple. All the while the child, with a disability, is brilliant and rolling their eyes, dying inside. February was crazy due to our intensive therapy and this month has no excuse attached. I'm not sure where we fit anymore. So my goal in the next few weeks is to go and talk to private preschools about Caleigh attending in the fall. Of course, she will need an aide to go with her, but I really think at this point she is ready. More importantly, I am ready for her to be ready. She needs that interaction that she can't get staring at me, even if it is only two days a week. I have a plan to tour schools without offering up information and then deciding on a the one that will work. Then we will make an appointment to discuss matters. I've had this plan on my to-do list since February. It's big girl time.
  • As I type there is paint drying in our laundry room. This is the room we walk through everyday to get to our garage and it also holds our pantry. It's dingy and probably has original paint. Not to mention the holes that Caleigh's equipment has so nicely blessed the space with. I've got big plans for this room, but really the paint will make all the difference.
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  • Caleigh has been doing really well with her power chair lately. Her time in the chair is getting to be longer and the other day she asked me to drive the chair twice in one afternoon. I'm considering this progress. If she is happy enough driving that she wants to continue to drive than that is inches in the right direction. I made some adjustments to the tray and she seems to be holding her head up better for longer. We are excited about that as well.
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  • After a lot of back and forth with insurance companies, we finally got approved for Caleigh's Pedialyte to be paid for and delivered to our house. We use 35+ liters of Pedialyte a month. Remember, Caleigh doesn't get H2O. We mix her formula, medicine and give extra fluid throughout the day with Pedialyte. We have been spending about $150 a month on the clear gold. Now we don't have to run out at the last minute and buy as many bottles as our local CVS, Walmart and Walgreens has. We would make 2-5 trips to the store each month because the stores just don't stock 35 bottles at a time. Especially the unflavored. So we are beyond thrilled that our home health will be delivering to us. One less thing to deal with one less thing to buy.
I think that is about all the big update stuff for now!
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