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.

Thursday, June 07, 2007

School Planning, Ear Ache, Kiddo Updates

I'm not sure what I was thinking when I thought we might get back to a "normal" routine. Is there really any such thing as "normal"?

We have been busy. Daddy has been busy in the office after being gone for two weeks. Mommy hasn't had a lot of time to help him. And we're all trying to catch up on sleep after vacation. Earlier this week, the girls took a 4 hour nap. Tonight, they really didn't want to go to bed.

Rebekah was complaining Tuesday night that her ear hurt and she wanted booboo medicine for it. I gave her some tylenol and asked if we needed to call the doctor and see if he could look at her ear. She said yes. So, Wednesday morning I called and scheduled an appointment with one of the other Pediatricians in her doctor's office (her pediatrician didn't have any appointments available - except for one that would have meant no school). The doctor looked at her ears and they looked fine (no infection). The left one looked gray and flaky (thanks to radiation), but not red and inflamed.

She used the machine to test her ears and the left one tested pretty flat. It looks like she has a fair amount of fluid in the ear. The same was true in early May when we were in. And she complained about it hurting a couple of days while we were on vacation. So it seems that she has probably had some fluid for nearly a month. Starting to be chronic. She suggested that we see an ENT and wanted to know if we have seen one before. So, I called the ENT's office to schedule an appointment. If there is concern of chronic fluid, he will want a hearing test before he sees her. So I've got those scheduled for the 25th of June. Hopefully it won't bother Rebekah too much between now and then.

Today we had a planning meeting at the local grade school to plan for Rebekah's Kindergarten (IEP Meeting). We met with the Kindergarten teacher, the special education teacher, the speech therapist, the nurse, and the special needs coordinator. The normal Kindergarten schedule is from 8:25am to 2:45pm on Monday, Wednesday and Thursday. The staff was open to anything including using the regular Kindergarten schedule or having Rebekah attend 5 half days or any combination. We are going to start the year with having her attend the regular 3 full days and add an additional morning to use for therapies, repetition, etc... We will have to evaluate how well she is doing with it as we start into the school year, but at least we have an idea of what it will look like.

Rebekah will be in the regular classroom for most of the time with some modification to "projects" to fit her capabilities. Part of the reasoning for the "extra" day is to avoid having her pulled out of class for therapies and other special needs (at least to the extent that we can avoid it). For the most part, we'll continue the goals that are in her current plan. We will need to reevaluate regularly as we see how she is doing.

She'll have an aid with her all the time and she'll have multiple aids that work with her (so she doesn't think she has a second mommy). The aids will need to know her special needs and concerns - and she's got a few of them. We (Mommy and Daddy) put together a list of some of our concerns for Rebekah and took several copies of the list with us to the meeting. Some of the concerns are medical (eye problems, ear problems, brittle bones, and needing sunscreen and a hat to protect against solar radiation), some relate to the therapies she needs (speech, PT, and OT) and some relate to social and self care issues (toileting, needing to interact with her peers, and accustomed to early afternoon naps). It is one more step in the education process.

I spent some time Monday and Tuesday working on Rebekah's therapy schedule for the summer. Then Wednesday found out that her school schedule will be changing. I wasn't expecting that one. So much for planning! I think we can still make it all work, though. It just isn't what I thought it would be.

Gage is home now after his bone marrow transplant. He still has to be very careful and he isn't out of the woods yet. Please continue to pray for him as he recovers.

McKenna is in Boston preparing for Proton Radiation treatments. Her mom and dad are with her. Dad will be there for a week or so and then come home. Please pray for the family as they are split up and will be for several weeks as well as for McKenna as she goes through the treatments. Pray that the treatments will be successful and with minimal side effects.

Josh had his wish granted last week - a pirate for a day. Check out his page for the details. Also, he made the local news. Here is a link for you. He continues to have issues with his esophagus. Josh's doctors have come up with a possible plan, but it might or might not work and would not be "easy". His parents have decided not to move forward right now, but are not eliminating it for the future. Please pray for them as they continue to make decisions for Josh.

Rachel continues to have issues. They don't really know the cause of all of them. Her family continues to believe that she will be healed on earth. Please continue to pray for her family as they wait for the cure. Check out her page for all the details.

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