An Update..., Finally!

Sorry for not posting in a while. We’ve been very busy. After the trip to Atlanta, it was time to get ready for Christmas (including all the shopping). The girls were home from school, which meant that Mommy had less time to get other things done. Right after getting out of school for Christmas break, Rebekah was very upset that she couldn’t go to school for a “long” time. She wanted a paper chain so that she could take one chain off each day and know how many days were left. She wanted her chain to tell her when she got to go back to school. Not until Christmas, but back to school. Sarah decided it was a good idea, too, so we made one for each of them.

I have to start off with a couple of stories. Sarah came to me today to “tell” me something. She said “You should never tell a crocodile ‘good morning’ but you should tell it ‘good night.’” “Why?” I asked. “Because he might eat you.” “What will happen if you tell him ‘goodnight?’” “Uh, I don’t know. I think maybe he’ll fall asleep.” I’m not sure where the story came from, but I thought it was very cute.

We were sitting in church last week and Sarah was sitting next to Mommy while we were singing. The words of the songs are up on a screen up front and we’ve been working with the girls on looking at the words and singing with us. Sarah asked Mommy what the name of the song was. Mommy said “Knowing you”. Sarah said “How can the first word be Knowing when it starts with a K?” At school, she has been working on letters and their sounds. Mommy was tickled by the question and happy that she is paying attention at school and at church. She is starting to grasp some of the concepts that will be needed for reading. .

Rebekah is beginning to be more independent in her thoughts and actions. She likes being responsible for getting to different places at school (recess, physical activity time, library, lunch, etc…) on her own. She is taking a bigger part in choosing what to take for “weekend news” – kind of show & tell about something that happened over the weekend.

Rebekah is also remembering things from the beginning of the day to the end of the day and asking about them. It is not uncommon for her to ask about something we talked about at breakfast when she gets home from school. I’m happy to see the improvement.

Now for some of the events of the last month… We were very busy over the holidays!

We were invited to a Christmas party at Mommy Debbie’s family’s home. We had a fun time. Thank you Dunham Family!

The girls and mommy got to have a “spa” day at home provided by some business associates. They brought lunch for all of us (including Daddy). The girls (including Mommy) all got pedicures. The little girls got finger nails painted, too. The girls were able to decorate an insulated cup which they got to keep. Mommy got a massage, too. Then we got a little makeup and the girls got some hair pretties. The girls got their pretty Christmas dresses on and we took some pictures. We ended with some hot chocolate. The group brought dinner for us, too! What a special day.



There was the Fire Department Family Christmas Party, Christmas Eve at Grandpa and Grandma C’s, Christmas morning at home, Christmas lunch at Grandma M’s, Sunday with Grandma A at our house to celebrate Christmas, New Year’s Eve celebration at our house, the girls’ nanny’s wedding rehearsal and wedding and then finally getting the girls back into the school routine. Each of the events was fun and enjoyable.

January has started with a change in health insurance which has a lot of implications for our family. We aren’t even half way through the month and I can’t tell you how many times I’ve had to give out the new insurance information.

Next month - February will be 4 years since the completion of her cancer treatment. Assuming that all goes well with the scans and there is no evidence of disease (NED), then our next scans will be in 6 months and then another set of scans a year from now and then it will be annual tests but no more regularly scheduled MRIs, Chest Xrays and Panorexes. It is kind of exciting and kind of scary at the same time.

We have lots of scans (MRI, Chest XRay and Panorex), tests (heart echo & ekg and audiology-hearing) and doctor appointments (oncology follow up, endocrine follow up, ENT follow up) to schedule for February. And it is a short month. We’ve started the process of trying to get things scheduled. With the change to insurance, we have to look at each piece and make sure that we get appropriate authorizations when needed and determine if the physician is in network or out of network. If a physician is out of network we need to determine if there is another reasonable choice that is in network and should we switch.

One of the things that is different with the new insurance is that they do cover some Growth hormone. Of course they don’t cover the one that Rebekah has been on. So we are working with the Endocrine doctor’s office to try to switch her to one that is covered on the new insurance. We have some time, as we still have some of the old one. We mentioned to Rebekah that we might get some new medicine instead of the one she’s been using and would it be ok if Daddy gave her a shot each night. She says that it is ok if Daddy gives her a shot every day. She’s ready (and I do mean really ready) to “throw” out the “old” one. “It’s old” she says.

“It’s old” seems to be a favorite phrase. It applies to food & beverages when she wants them thrown out. She’s been saying that about her booster seat. She seems to think that she can get a new one by telling us the one we have is old. She doesn’t understand that the one we have is very protective and was bought for her specifically. She will stay in it as long as Mommy & Daddy feel it is the safest place for her. She tells me that some of her toys are “old”, but then wants new ones just like it.

Earlier this month, the home health company brought out a new breathing machine (BiPap) for Mommy. She is supposed to use it at night time. It takes some getting used to. When Mommy takes a breath, it will help force more air into her lungs. The ALS Doctor has suggested it because they think that the earlier breathing therapy is started the better. One of the breathing tests (breathing in) shows a low score, so Mommy qualifies for the breathing machine.

Both Mommy and Daddy have been fighting a cold over the last couple of weeks. That hasn’t made Mommy’s breathing any easier. It is hard to tell if the breathing machine is making Mommy “feel” any better because of the cold.

Mommy’s left leg (the bad one) has been feeling cold. Mommy went to the doc earlier this week to have it looked at. Doc decided that it made sense to do another ultrasound to make sure there were no more problems with blood clots. So we had the ultrasound and there are no signs of blood clots. That is good news. The ones seen in October have disappeared. Mommy continues to take medication to help prevent the blood clots.

The consensus is that the feeling cold is probably related to the ALS and at this point Mommy should wear wool socks to help keep the foot/leg feeling warm. In other words, there isn’t anything they can do about it so it is up to Mommy to try to make it more comfortable. Just one more thing for Mommy to “deal” with.

Mommy has been falling a lot more lately. One day last week, Mommy fell and hit the ground twice. And that was before 8:15 in the morning. It wasn’t the best way to start the day. Lately, she’s been able to catch herself and keep from falling. Usually, she gets more prone to falling later in the day, so starting the day off that way was not a good sign. She’s spent a lot of time sitting and being very careful when walking. She has to keep her cell phone on her at all times, in case she needs to call for help. Adapt, adapt, adapt.

That is really just the tip of the iceberg as to what has been happening in our lives. We’ve been busy. We’ve had lots of decisions to make. Lots of planning to do and just trying to figure out what is best for us right now and what we think will make the most sense for the future.