Friday, July 31, 2009


This is footage we took during Lizzie's family party for her second birthday at the end of June. It was one of her first times to roll around the house after our wood floors were put in about week and a half before her birthday. We call her wheeled stander her go-go, and she has gotten very good in it. Thanks to the wood flooring, Lizzie is able to wheel herself around the whole house as she pleases. The other day I caught her rummaging around our silverware drawer while standing in her go-go. She was licking each spoon and putting it back in the drawer!

Thursday, July 30, 2009

Sometimes It's Good To Read The Paperwork

Every time we go for an appointment or procedure with Lizzie we are handed a stack of paperwork. Mostly they are patient's rights and privacy policies which end up in my "to be filed" pile on my desk without a second glance. However, for some reason this time David decided to look through all the paperwork from the sleep study. He knows I have been really feeling impatient about not hearing any news from the doctor about the study results, and I've been threatening to call in myself instead of waiting for the call as we were instructed to do. So, David found an interesting page in the packet of paperwork which he very sweetly placed on my side of the bed. It is a letter from the sleep study clinic that said we would receive a call about the results about 14 days after our appointment. 14 DAYS?! AHH! We have a ways to go yet. I'm trying my best to hang in there. So much is riding on the results of this study.

But, for today I'm off to Scottish Rite for a full day of appointments. We are going to start the wheelchair process. Maybe I should make sure I read all the paperwork today.

Monday, July 27, 2009

Waiting For Results

This past Thursday afternoon the sleep study clinic called me and said that someone else had cancelled their overnight study for Friday, and we could take that slot if we wanted it. Although it was really short notice, I jumped at the opportunity. If we have to potentially squeeze in two studies before the 15th of September, I figured we'd better get started. We were on the waiting list with the clinic because they were already booked until October when the doctor set the dates for everything.

So, Friday night David and I packed our hiking day packs with travel blankets and pillows, a change of comfortable warm clothes including wool socks and Keens and Dave's computer with a bunch of movies to watch. We looked like we were ready to go camping! Our nurse Deborah teased that maybe we should take our fire starting kit and a rug to send her smoke signal messages. But, we really did need all this stuff and were very grateful to have it and use in a new context. Parents can sleep in the same room as the child being tested, but I was concerned that Lizzie would not sleep well with us in the room with her because she has her own room at home, and I wanted to make sure that the study went well. So, while Lizzie slept, David and I "camped out" all night in the waiting room. It worked out well.

During the study, two things were done. First of all, after hooking Lizzie up to all these wires and bands all over her whole body but mostly her head, they had Lizzie sleep with her trach completely closed off for about three hours. Then, they took the cap off her trach and had her sleep with it open. I'm not too sure for the reason behind this part of the study. Maybe they needed data points to compare. Anyway, the tech said that Lizzie slept well, and they were able to get some really good information. However, only the doctor is legally allowed to interpret the results.

So, I am sitting here on Monday morning waiting for a call from the doctor that I am not certain will come today. I will keep you posted on the results as I hear them.

Saturday, July 18, 2009

Pray For Non-Healing

I know I have not blogged in like, well, forever almost. I made a personal determination not to blog again until I cleared off all the old picture files I have on my computer that are really slowing it down. Well, between a family death, two birthday parties, a minor surgery, and four trips this summer, it just hasn’t happened. So, my new determination is to not post new pictures to my blog until I clear off the old ones. That will happen soon, I hope. : )

So here’s what’s the most recent thing going on with Lizzie. The ENT doctor would like to de-canulate Lizzie. In laymen’s terms, take her trach out permanently. WOO-HOO! HOWEVER, several things will have to fall into place before this could potentially happen on September 21st, or we will have to wait a full year to start the process over again. (They will not de-canulate during cold and flu season.) Number one, we have to find out if she still needs to sleep at night with a bi-pap machine for a form of sleep apnea. Number two, if she still needs it, can she tolerate a bi-pap facemask. She currently sleeps with the bi-pap connected directly to her trach, no mask needed. This means we will need one if not two overnight sleep studies to determine all this. I loath sleep studies. We’ve had several the past two years, and they are nothing short of torture for child and parent. A necessary evil I guess.

If it is determined she still needs bi-pap, the trick is how to get her used to a mask between now and the 21st of September. Bi-pap masks suction hard to your face in order to function properly, and to ask a two-year-old to suddenly accept that is near impossible. I don’t think we could just one night suddenly strap in on her head and expect her to be all right, but on the other hand, if we show it to her and play with it too much ahead of time and she doesn’t like it, she may see it coming and never learn to tolerate it. And, we can’t practice a few hours at night and take it off and switch back to the tube connected to her trach, that might confuse a sleeping brain and potentially cause her to stop breathing altogether. AHHH! Please pray for wisdom and insight for our good but very big dilemma.

Now here’s the other part. If we are able to get the trach out, we will go overnight to the hospital for the big event. The doctor will place a special bandage over the whole in her neck and will give it three months to heal up on its own. If it heals on it’s own during that time it will leave an ugly scar on her throat, and Medicaid, Lizzie’s secondary insurance, will not pay for plastic surgery to make it look pretty. If the hole does not heal on its own at the end of the three months, the doctor will do a surgery to close it, and while he’s at it, he can make it look pretty. Go figure. So, for this reason among everything else, we are praying for non-healing. : )