Visit Rebekah's Page to get updates, read messages and send messages to Rebekah and her family through comments. This is a public "diary" of a family whose little girl started a battle with inoperable cancer in April 2005. In December 2007 our house burned down. And in September 2009 Mommy was diagnosed with a terminal disease (a genetic form of ALS) that took her to Heaven in July, 2011, leaving Daddy and two young girls to make it on their own. Over several years of ups and downs, you will get into our hearts, minds and souls as we share joys and sorrows. It can sometimes be very difficult to read. We hope it is also uplifting. Please find joy in what you read here.

Friday, November 06, 2009

Some Relief from Pain, Some Walking Difficulty

This post got lost in the past, being saved as a draft in progress and then never gone back and looked at. Posting it up here so that you are more up to date as to what is going on.

The blood thinners (or more correctly anti-coagulants) seem to be helping with the pain. Last week, Mommy’s pain finally let up and even some of the constant pain that she had before the trip to Atlanta has gone. That is really good news! She was able to stop the Lovenox shots last week and now she is seeing the doc weekly to get the Warfarin level just right. Each person reacts differently to the medication, so they need to check regularly until we find the “right” dose for Mommy.

Wednesday we saw the physical therapist at the new ALS clinic. We wanted to get her input on a brace for Mommy’s leg and also to look at what we need in a motorized wheelchair and will the one that was given to us meet all the needs. Mommy tried on several different types of braces and walked in them. They (the physical therapist and the representative from the foot brace company) wanted to see Mommy in a brace that goes under the foot and behind Mommy’s lower leg to help keep Mommy from “locking” her knee. The two of those she tried seemed like they were going to push her over. Then she tried one that went under the foot and in front of the lower leg. It felt better than the other ones, but not sure how much it would help. In any event, the physical therapist doesn’t feel that any brace will keep Mommy from falling. One might help, but it isn’t going to prevent falls. Mommy had to do a lot of walking, trying out the different braces and letting the therapist see how she walks with the cane and no brace, etc… She fell several times and it was very discouraging.

The therapist thought that it would be much safer for Mommy to be in a wheelchair most of the time and only be on her feet when moving from one seat to another (wheelchair to couch, bed to wheelchair, etc…). Mommy’s biggest concern with that is being able to keep up some strength in her legs. The longer she sits, the more difficult it is to get up and walk and the more balance problems she has when she does walk. Since Mommy can walk, most of the time with help, it makes some sense (at least to us) to continue to do some walking. Mommy doesn’t want to give up and wants to keep fighting to keep what independence and strength she can.

Then we looked at the wheelchair. It is missing some key features that the physical therapist expects that we will need. Insurance companies won’t pay for modifications to wheelchairs that they didn’t purchase. So, in order to get the features we need, we are forced to either purchase a new wheelchair ($25,000 or so) getting some ($5,000 or so) help from insurance or paying for the modifications (which aren’t cheap) to the wheelchair we have completely on our own. We can possibly borrow one from their “sharing” closet, but it will only be short term.

Health Insurance is a big issue for us. The plan we’re on now has some great features that we don’t want to give up (like price and no lifetime maximum for example), but it also has some limitations (like the $5,000 per year maximum for durable medical equipment and not paying for Growth Hormones). Any other plan (and we’re very limited in what plans might be available to us) will have its good and bad, so contemplating a change is difficult. We are approaching the end of the year and know our out of pocket amounts will begin again in January. With that in mind, we keep thinking that if we are going to switch insurance then January would be the time to do it.

Rebekah lost another tooth this week – the first from the top of her mouth. We are not exactly sure when she lost it. Monday, when she came home from school she was wiggling it and it was pretty loose. Somewhere between Tuesday Morning and Wednesday Morning, it came out. She didn’t say anything at school and they think it was still in her mouth when she got on the bus to come home. The bus driver didn’t notice anything on the trip home. Cathleen didn’t notice anything that afternoon. Mommy & Daddy didn’t notice anything that night. Mommy noticed it was gone in the middle of breakfast Wednesday morning. It is kind of hard for the tooth fairy to come when there is no tooth! We haven’t found it anywhere. It is a complete mystery. I know it was ready to come out. I just don’t know where it went.

Monday afternoon, we will go to clinic at the new ALS center. We’ll get to meet all the specialists and see what things they suggest for us and find out a little more about their clinic. It is a “marathon” afternoon with 4 hours of sitting in a room with the specialists coming in to see us. On one hand (the one that says we may get some help with some of the difficulties we are experiencing) we are looking forward to it and on the other hand (the one that gets tired after very long and doesn’t like to hear how life will never be the same as it once was) we are not.

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