Updates & Good Riddance 2009!

Dog rose leaves covered with frost in Sweden.

I hope you all had a wonderful Christmas with your family. We did. It was different that Christmases past, but it was still good. The girls were spoiled by Santa and grandparents alike….and so were we. We did a lot, saw a lot, ate a lot. It was good.

I’ve received a few emails and requests for updates on Chad. I really haven’t known what to say in the last few days, so I haven’t said much of anything.
For some reason, there has been a change in the last few days.
It started with Christmas day. He was in bed nearly all day — only up for 30-45 minute increments to visit with his parents, see what Santa brought the girls and the grab a bite to eat.
The day after Christmas, he had two seizures. Very simple, very mild — but they happened. He hasn’t had one since October, so it threw us for a loop. I was quite frazzled, until Chad remembered that he had forgotten his medicine that morning.
He forgot it the next morning.
And the next.
And the next.
Luckily, I am here to remind him and we now know that I need to stay on top if his medications again.

This morning, I told him to take his meds a few times, and he reluctantly got out of bed to do so. While I looked into his daily¬† medicine box, I noticed it looked a little light. He hasn’t been taking his second seizure medication. I restocked it, but I have no idea how long he has gone without it.
He was handling his medicines so well; but I now have to take that duty back.
He is mad at himself for not being to remember, and even told me that he feels like he is losing his mind. He probably is, very slowly, and I think that makes him even angrier.

He still is miserable; even more so in the last few days.
He has absolutely no appetite and I have to remind him (beg, really) to eat. He has lost about quite a bit of weight in the last two weeks.
He has been in bed a little more than “normal” and I’ve noticed he looks a bit gaunt in the last few days. He has deep circles under his eyes; which I wouldn’t expect with the amount of sleep he gets. Then again, I don’t think he gets any quality sleep which probably accounts for his appearance and mood lately.

I have been calling Dr. T’s office for the last two days to get Chad in as quickly as possible. Originally, Chad wasn’t slated to go back for a check up until the end of January. But we cannot wait that long. As of right now, the earliest they can see us is Monday, January 4. I would like him to be seen this week so they can get him comfortable NOW, but we will have to wait. Dr. T is out of town and we really do prefer to see him since we have such a long history with him and we feel comfortable with his suggestions.

As much as it pains me to say it, I seriously doubt that Chad will be returning to work. He is in bed around 16 hours a day, if not more. I should have started disability paperwork a long time ago; but he always seemed to get better just as I started the process. This time, I’ll complete it and get it done. I still hold out hope that he’ll get better, but the paperwork needs to be done regardless.

He does talk some, which is great. But he often starts a sentence and can’t finish it. He just loses his train of thought and nothing brings it back. When he chooses to take a phone call, he puts in on speaker so I can help him with the conversation if needed.

We are now looking at pain management — unless, of course, Dr. T wants to piddle around with adjusting the shunts. At this point though, I don’t think Chad or I want to go through that whole process. When speaking with the PA yesterday, he indicated the headaches and pain were probably not shunt-related because he had no other “typical” shunt-related symptoms. We may still try it though. It all depends on what Dr. T recommends and what Chad feels comfortable trying.

We have missed visits from many of our friends this week; friends that have come to NC from far, far away. Chad & I always look forward to the week after Christmas because it gives us a chance to slow down and catch up with so many people that we miss! I was quite disappointed that we haven’t been able to see any of them this year. Chad is just not up to it, and I appreciate their understanding. We miss all of you! Hopefully, he will feel better when you venture out this way again.

I am looking forward to putting this year behind us. Nothing has really turned out the way we hoped it would, and I hope that the New Year brings us some better times.
The girls are doing great, and are ready to go back to school! They love school and miss all of their friends.
I am hanging in there. I am ready for Summer to come back. Or even Spring. I’m ready for some S-U-N.

I am going to try my best to update on a daily basis, even if there is nothing real to report. Sometimes I just can’t update, so don’t hold it against me if I can’t. I am also trying to make it easier for me to blog, and you may notice a change in the blog format. I know I promised I wouldn’t do that again, but I feel the need to streamline and I think it’s long overdue here.

We wish you a peaceful, restful, healthy New Year!

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3 Responses to Updates & Good Riddance 2009!

  1. C. K. says:

    It is such a heavy feeling after reading the blog. However I am inspired by the courage, persistence and uplifting spirit of Skye. You are not alone. Many prayers as a rainbow are surrounding you and your family. may the hope and strength be with you, Chad, Carys and Cailyn in the New Year of 2010.

  2. carlabjones says:

    We love you guys! As always, you are in our prayers contantly.

  3. candacea says:

    Oh, Skye… my heart is so heavy for you. I hope things change soon for the better. Would you mind messaging me your mailing address when you get a minute. Take care and we're still praying for you all.

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