Wednesday, July 23, 2008

Relief Has Arrived!!

The new A/C is in and working great! AND Lizzie got her half body cast off this morning! AND I get to go spend time with some of my girlfriends this evening! Woohoo!

Praise the Lord for giving us the strength to endure!

Tuesday, July 22, 2008

How Do YOU Spell Relief?

This weekend several commercial slogans from my childhood kept resounding in my mind. Mostly, the one for Rolaids, “How do you spell relief” and the one for Calgon bubble bath where the frazzled lady exclaims, “Calgon, take me away!”

“Why is that?” you ask. Well, let me tell you. Friday morning I heard a water trickling noise coming from the heater closet at the end of our hallway near Lizzie’s room. When I went to go check on it, the flooring that the unit sits on was completely soaked. I quickly called our landlord who made a few phone calls until she was able to find someone to come out to take a look at it. However, I had to leave to go pick up David from the airport. This was the third week so far this summer that he has been gone, and every time he left, some big crisis happens. Week 1, I broke my toe, week 2, Lizzie breaks her leg, and now week 3, our A/C starts to die and leaks water.

“No problem,” I tell myself, “our landlord’s wife will meet the A/C guy at our house while I’m gone to the airport, and he’ll fix the leak. We’ll blow a fan in the closet until it’s dry, and boom! Problem solved.”

Ha! Ha! Ha! Apparently, the emergency A/C guy was a quack trying to rip desperate customers off. An honest and dependable A/C repairman couldn’t come until the next afternoon. In the meantime, water is starting to come out of the unit in the hall and getting the carpeting wet. By Saturday morning the carpeting around the closet was so wet that it would come up between my toes when I stepped on it. And to top it all off, we discovered that the majority of the water was not in front of the heater closet, but has been pouring out the back into Lizzie’s closet where we store all of her medical equipment!

David had an event with the students most of the day on Saturday, so I was on my own to empty Lizzie’s closet and start trying to soak up the water with towels. It was a completely futile effort. I called for back up. “Mom, Dad, I need HELP!”
They came to my rescue. Our landlord also came on Saturday night to help with the efforts.

Anyway, we had to move Lizzie into Becca’s room, this is no small undertaking. And Becca has been sleeping in Lizzie’s room with the fans blowing on the now bare concrete floor of Lizzie’s closet in an attempt to prevent mold from growing.

We are supposed to get a new A/C installed today . . . we hope.

“Calgon, take me away!”

Sunday, July 13, 2008

A Seat For Lizzie

Lizzie’s condition and developmental delays have created some unique needs for specialized adaptive equipment. One of her issues is that she is unable to sit up yet. We have therapists that work with her, and they are very optimistic that she will be able to at some point. (Of course the half body cast has slowed her progress down, but it is just for a few more weeks.) Lizzie has outgrown most of her baby gear designed to support an infant. This includes her baby bathtub. We put in an official request with Medicaid for a bath chair for the tub that will help support her. We were initially denied. Medicaid won’t pay for one until a child is a minimum 30 pounds in weight. Lizzie is just under 20. But praise God, we appealed it, sent them some more info, and got approval!!! We are expecting it to be shipped to our house any day now. I will post pictures of Lizzie in her bath chair as soon as it arrives, and she is out of her cast.

But, there is more. Because of her reflux, we have to keep her upright for a while after each feeding. So, we have been using her bouncy seat to accomplish this, and to allow her to play with her toys in a more upright position. Well, as you can imagine, putting a 12 month old in an infant seat is somewhat precarious. Her legs hang off the end of it, which is a potentially dangerous situation. I can’t help but wonder if this is how her leg was somehow broken. Also, there are challenges with transporting Lizzie’ from room to room in a bouncy seat without wheels. We sent in a request for a seating system called an x:panda. This will provide a safe place for Lizzie to sit while offering proper positioning to help her develop the muscles needed to sit upright unassisted. It is on a wheeled base so that we can more easily move her from room to room. It raises and lowers for floor and table time, and it comes with an optional tray table. The really nice thing about this seat is that the chair portion can one day be removed and placed into a wheelchair frame. This would just be ideal for Lizzie.

However, we have received two denials from Medicaid so far. This seating system with the particular bells and whistles we need for Lizzie costs over $1200. But, we are not giving up. We are trying to send as much info as we can to prove her medical need, and we are praying like crazy. We know that the Lord will provide just the right thing at just the right time.

Please join us in praying for this seat for Lizzie.

Tuesday, July 8, 2008

We're Singin' The Reflux Blues - A Lizzie Update

Ever since Lizzie was a newborn she has suffered with reflux. Not just an occasional spit-up, I mean full force projectile vomiting anywhere from one to five times a day. When she was a little bitty, I kept expecting her to grow out of it like most infants. When she hit about six or seven months old, it became so severe that she started loosing weight and did not want to eat. I don’t blame her. I wouldn’t want to eat either if I thought it would just make me vomit.

It has been very heartbreaking to see her suffer like this. I cringe every time she coughs, because it’s not that uncommon for it to end with her throwing up. She just looks so miserable when it happens, and it takes her a few minutes to recover each time.

When she started loosing weight, I took her to a GI doctor. He put in a feeding tube to use when she doesn’t want to eat. We found that it had the added benefit of getting the air off of her tummy from incorrect swallowing. All this helped for a while so we decided to start on some solids. Big mistake! Things only got worse again.

We have tried just about all the reflux med’s on the market, and continue to be unsuccessful in getting the reflux to stop. We have also had several tests and scans done to make sure everything was “hooked-up” okay, and it has all come back normal.

We have to feed her like a newborn, small amounts every three hours and keep her upright for at least thirty minutes after each feeding. Sometimes this helps, sometimes it doesn’t.

The other day we had a visit with our development disabilities doctor at Scottish Rite Hospital. He said that because there is an underlying brainstem issue, as evidenced by her breathing problems, medications would not help. She needs a surgery called a Nissan. This is a procedure that I don’t know a whole lot about, but basically they can tighten the sphincter muscle at the base of her esophagus/ top of her stomach. The problem is that there is a fine balance between making it too tight – you can’t eat solids, and not tight enough - you still reflux. You have to do just right, and there are only a handful of doctors in the area that do this procedure.

Please be praying for two things. . . well make it three:
1. Complete healing from the reflux, and no need for surgery at all
2. The upcoming doctor appointments with the GI surgeon
3. For the surgery to be a complete success and Lizzie’s ability to eat normally with no concern for reflux