William's updated diagnosis

We visited our usual neurologist this morning. He observed the decrease in William's abilities and also commented that his hands are curled more than even the first visit we had. His reflexes are missing in his legs and now in his arms, which is new. Due to the unknown onset of this condition (sometimes it can be linked to a surgery, stomach virus, vaccinations, etc, but we have no indication of that in William) and the continuation of symptoms past 8 weeks, he has diagnosed William with the Chronic form of GBS, called Chronic Inflammatory Demyelinating Polyneuropathy. The condition is the same as Acute IDP/Guillain Barre, but does not resolve itself in the brief time that GBS patients experience. This does not mean that he can not spontaneously recover from the condition, but his condition could continue on for a very extended amount of time. Treatment for CIDP includes the IVIG treatment he has been receiving and possibly steroids. Other treatments can include immunosuppressants, but those are not even on the table at this point.

We know that the IVIG is effective in relieving William's symptoms and given the drastic side effects of Prednisone, we'd like to avoid that if possible. Of course, steroid doses can be administered at home and are far cheaper than hospital admittance for IV blood products (which run $30-$50K per treatment) and we will pursue them if necessary. The doctor really wrestled with whether to begin a steroid treatment today or whether to begin a course of regularly scheduled IVIG treatments. Before he continues treatments, he needs to do a nerve conductivity test. This is the test we've been fearing. This test involves electrode stickers placed strategically on his arms, legs and hands, through which they run electricity and measure the reaction times of his muscles to determine where and how the nerves and/or muscles are failing. In a person with healthy nerves, it feels like the shock you get in the winter when you're wearing wool and touch the door knob. For William, who is extra sensitive right now to all stimuli because of his nerve damage and because of his prior diagnosis of Sensory Processing Disorder (SPD makes his clothing tags feel like sandpaper on his skin and walking flat footed on the floor feels like walking on jagged rocks), this will be unbearable. On top of that, the doctor will have to use a higher setting to get a reaction from his nerves at all, since they are damaged. Which begs the question, "WHY exactly are we putting our 4 year old through this??" The doctor and I discussed that very thing at length. This test will not alter the treatments at this time, but now that we know we are dealing with a chronic problem, it is important that we have a benchmark test to assess any future downturns to determine the necessity for drastic treatments, like the immunosuppressants. By now you are thinking what I was when the doctor said it...if this test is the benchmark, we'll have to endure another one at some point to be able to compare. And now you are thinking, like I was, that this guy is just sadistic to put a young child through that not once, but twice (or more). I honestly feel like he would prefer not to perform this test on William and there is no guarantee that we will have to do another one, unless William continually worsens, but it will become an essential tool if we continue down this horrible path over the next months or years. The doctor has prescribed a sedative that should not interfere with the test results, but will make William relax for the test without actually making him unconscious. "Schnookered" as the doctor called it.

William seems to be following a 4 week cycle with the IVIG treatments and subsequent weakening. We will perform this test on Wednesday morning, allowing us to enjoy William's 4th birthday party at the fire station this weekend and also to see how his condition progresses without IVIG intervention every 4 weeks. We will be watching for signs of distress, breathing difficulties, changes in his voice, or his ability to hold up his head, all of which will send us immediately to the hospital for intervention with IVIG. Also, any further weakening even without distress will warrant hospital admittance after the test on Wednesday for IVIG, but if he remains stable through Wednesday morning, we can pursue a path of allowing his own body to balance itself without hospitalization. Regardless of potential intervention he will continue with physical therapy until this condition becomes a thing of the past. Continual exercise of his muscles is essential for preventing permanent paralyzation and weakness.

So, as it turns out, we're in this for the long haul and it won't be pleasant. In a condition which normally repairs itself in its own time frame, there are no easy answers and no rushing things. I'm confident that God will heal William at the appropriate time, perhaps when I've learned the lesson from this that I need. (So, let's get on it with it...hit me over the head with that lesson and let's get better!! ) :-) On second thought, maybe a lesson in God's timing is in order here.

In case you were worried, William is still the brilliant and sweet boy he's always been. He's frustrated by his lack of abilities now, especially when trying to keep up with his sister. But, you've never met a more cuddly boy and he's so forthcoming with expressing his love too.

Thank you for your prayers.

William is Weakening

I've observed a continued weakening in William over the last two
weeks. I've taken the "wait and see" approach to this point because
the neurologist warned us that the next test they perform will be
painful and long and because the last time I took him in, they
admitted him, but he appeared fine the next day. It was 1 month
since his initial admittance and treatment, and it is one month now as
well.

The physical therapist told me today that she feels he is getting
weaker as the days go on and that she is concerned. I knew it and saw
it too. I've called the neurologist's office but am waiting to hear
whether they can work us in for an appointment before December.

He's weak. He's struggling to dress himself again and struggles to
get up when he falls, which is frequent again. He is climbing the
stairs, but it is very slow and labored. He's in pain when I squeeze
or pick him up. I fear we are quickly approaching right back where we
started. He responds well to the IVIG treatment. The other option is
Plasmaphersis, also known as plasma exchange, where they remove blood,
extract his plasma and return the red blood cells, but one method is
not better than the other.

Whatever happens, I just hope he's able to attend his own birthday
party this weekend. Poor guy.

For those interested, some information on GBS

Election Day

I found this site while looking for information regarding National Housewives' Day (Nov 3rd). HaLife maintains a list of daily trivia, but there is nothing trivial about what our country does today.

Today is the big day, Election Day!! I think the only thing I can say today to make a difference is, "Please go vote!!"

According to HaLife, it is also, Use Your Common Sense Day. Let that apply when you go to vote today, too.

National Housewives' Day

Today is National Housewives' Day! That'd be me!



I manage my household. That's my job, my occupation, if you will.

I must say that some days I do it well and other days I need a manager to manage me, but I’m proud that I’m a housewife! I'd love to cook breakfast at dawn with my apron on, have full meals emerge from the oven with beautiful garnishes promptly at 6 each evening and have floors you can eat off of. I don't wear cocktail dresses and heels to chase my kids and I've only vacuumed in pearls once, which was a little exhilarating, actually. I don't mind the stereotypical images...I kind of idealize them, but the truth of the matter is that being a house wife is very little like that (at least for me).

The funny thing about me being a housewife is that I’m really not that good at it. I hate to fold laundry. I very much dislike sweeping. I actually like vacuuming, but there is usually too much clutter around for me to push the machine through. I let toothpaste build up on our sinks and mirrors and I don’t make my kids make their beds everyday. Regardless, I’m truly honored to be able to stay home with my children and serve them and my husband. It would be dishonest if I said there weren't days that I would prefer to be somewhere else (usually browsing a craft or home store). But, I know that my time and energy are much better spent in the managing of our house and raising our children.

Mainly, in keeping a house, I work to make it a home. In raising our children, the goal is to turn out well-balanced, stable human beings with a love of others and a passion for Christ. In being a wife, my job is one of support, confidante, companion, lover and best friend.

So, today I want to apologize for my shortcomings and pledge a dedication to improving myself toward those goals. It's an important job and I'm honored to get to do it.

I congratulate all housewives out there for their dedicated work. May your sink be ever-sparkling and your dinners never burnt. :-)

(Edited to Add: Today is also Sandwich Day, so see if your housewife will make you one. November 3rd is also Let Someone Have the Last Word Day, so...)