February Fun!

February was a month of great fun! With my birthday, Valentine's Day, and an unexpected record snowfall all within a one week timeframe, there were many opportunities to get out and play!

David whisked me away for an overnight hotel stay without the girls for the Valentine's weekend. Then, he took the girls on a special daddy daughter date to make them feel special too! He is such a wonderful husband and daddy. I feel very blessed he's in my life.

Just as a side note, it is a published fact that the divorce rate among couples with special needs children is somewhere around 80 to 90 percent. I am grateful to the Lord for both our individual relationships with Him and our deep love and commitment to our marriage. When stressful times hit, we have those things to cling to, not to mention the love and prayers of those who care for and encourage us as a couple in so many ways.

And, oh, I almost forgot. Lizzie's got her cast off! Woo Hoo!

Lizzie's Leg

We are so relieved! Words cannot begin to express our relief and gratefulness to the Lord. We took Lizzie to Scottish Rite on Tuesday morning for her orthopedic doctor to take a look at her x-rays and give us his opinion. Based on the opinion of the ER doctor and the orthopedic nurse I spoke to on the phone for Scottish Rite, I had mentally prepared myself for the half spika cast for four to six weeks and possible surgery.

The first person to come into the exam room at Scottish Rite was some sort of resident in training. He was nice, but seemed concerned that I had no explanation for her broken leg. He took a look over Lizzie and her leg and said that we could probably get into the casting room today, he just needed to check the schedule. She needed the half spika.

Okay, so he leaves the room to go double check her x-rays and and check the casting room schedule. He is gone for at least 25 minutes. We wait and wait and wait. Suddenly the door opens and in walks the very gray haired orthopedic surgeon who operated on Lizzie's clubbed right foot last spring. He is followed by a group of residents and nurses in training who speak in hushed tones around him. Dr. Richards! We love him, and he has taken a special liking to Lizzie. (Or at least it seems that way.) He is the oldest and most respected orthopedic doctors at Scottish Rite and we are grateful Lizzie's case was assigned to him.

He tells us that after looking at the x-ray he believes that a soft cast will do the trick this time and she should be all healed up in three weeks! He let us look at her x-ray and explains that there is no birth defect or brittle bone disease. She's just a kid with Spina Bifida with bones that aren't real dense do to lack of use. Unexplained broken legs are normal in these cases and the healing process actually makes them stronger. No surgery or anything was needed and in his opinion she looked otherwise great!

Wow! We did the happy dance after everyone left the room. After so much bad news over the years, it is really nice to hear the word "normal" and "Lizzie" used in the same sentence.

Broken Leg - Again

Wow! Where to start? Lizzie has just been doing fabulous! She has new cute glasses, a new hot pink wheelchair, and a very smart mind that runs nonstop. She loves to laugh, she is learning her colors, and her favorite phrase is, "No! I do it! Hand off!" She loves Elmo, Barney, and Boz. She freely hands out hugs and "pat pats." We feel so blessed.

Okay, the broken leg part. I took Lizzie into the ER late Saturday night for a few concerns with a fever, pain in her left ear, and some apparent irritation with her trach and g-button. I figured I could be up all night with a miserable child, or I could be up all night with a miserable child and a staff of doctors and nurses that could do something about it. They asked me to strip her down to her diaper for the doctor to give her a comprehensive exam. As I was taking her pajama bottoms off I noticed that her left thigh was swollen. It wasn't huge, but I think that the way she was sitting in my lap as I was undressing her gave me the perfect view. Everything with her exam came back clear and within normal range, except for the leg x-ray.

This is the second time her leg has been broken. The first time was right around her first birthday. It was the same leg, and very near the same location (just above the knee). The doctor said that she does not have brittle bone disease (we already knew this to be true from her first incident), but that the bone there in her left leg was really thin, maybe as another secondary condition of her Spina Bifida. I'm just wondering how many "secondary conditions" a child can have. We are up to like number ten or eleven. The doctor said that there is no telling how it happened. Anything really could have caused it. They temporarily splinnted it until we can get to Scottish Rite to get the big cast on.

The "big cast" is called a half spika. It's basically like a half body cast with her right leg free. It goes up above the waist so you can't bend in the middle. Our appointment is set for 8:45 AM in the morning. So we are spending the day prepping and preparing for the appointment. We have to re-think transporting her, her clothing, and seating issues. It's a lot, and looks different now that she is two-and-a-half versus 12 months old.

She is not in very much pain but is easily agitated. Please keep her in your prayers for the next six weeks!
(The picture is of Lizzie with her temporary cast.)

The Results (Sort Of)

We finally got the call for the doctor's office about Lizzie's sleep study results. The doctor has cancelled her decanulation (trach removal) procedure set for next month. We are all very bummed because we want the trach gone for so many reasons, but on the other hand, we understand that Lizzie needs to be safe while she is sleeping. They found that when she sleeps with her trach capped off, there is some obstructive apnea occurring. This is where the "sort of" part comes into play. Obstructive apnea can have several source, like enlarged adnoids or tonsils, or the tongue falling back too far in the mouth to block the air passage. The source of her obstruction is unknown at this point. It may be related to her partial vocal chord parallesis. It will take more time and tests and procedures to determine exactly what is happening there. And, the main point is that the doctor did not feel that she was safe enough to remove her trach.

I spoke only to the nurse whose job it was to report their findings and conclusions to me and had very few answers to all of my questions. They set us up with an appointment on the 18th of August to see the doctor, and I plan to come ready to ask a lot of questions. My fear is that the appointment to remove Lizzie's trach was cancelled pre-maturely. I sure hope the doctor did not forget that Lizzie already sleeps with bi-pap at night which can be a solution for obstructive sleep apnea. I guess we will find out soon enough.

Go-Go

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!

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.

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.