Lyme Disease

Sometime back in October, I'd thought long and hard about what could have brought on William's condition. I wondered if it had anything to do with our trip to Arkansas 4 weeks before his symptoms emerged. I thought about Lyme Disease, as the area had gotten a lot of rain that spring and the ticks were rampant there. We looked for ticks each day of our vacation, but did not find any on the kids. A friend suggested that it might be Lyme Disease because she has learned a lot about it recently when her whole family tested positive. William was hospitalized again shortly after that and I requested a lyme test. I knew that the standard CBC test was highly unreliable, but I felt like it was a first line of defense. The results came back negative, overall, though one of the titers showed a positive value. This test frequently gives false negatives and positives.

Our neurologist gave good reasons why he did not think it could be Lyme Disease, but I did get the impression that he thought we were questioning his original diagnosis. I felt sure from my reading about CIDP, that William does indeed have it and the treatment is working, but I was more concerned about what triggered his immune system to begin with. The doctor eased our minds a bit that his collection of symptoms were not truly indicative of Lyme, but it still lingered in the back of my mind that we never really got a full answer about this disease. We let it lie for a while.

In mid-December, I was brave enough to ask our pediatrician to sign for a specialized Lyme Test for William. I'd learned of this test from the same friend as before and had ordered the lab kit from the company. The cost of the test is $500, which is part of what kept us from insisting on this special lab work before. The nagging feeling inside me continued and when we found out about another friend of ours that went to Arkansas with us, experiencing very similar symptoms to WIlliam's, I couldn't ignore it any more.

A few weeks later, the lab results returned and they were officially inconclusive. I referred our pediatrician to an out-of-state pediatrician who specializes in treating Lyme in childhood. They discussed the results over the phone. After a couple more tests, they agreed that William does have Lyme Disease. The treatment for Lyme Disease is high doses of antibiotics over extended periods of time. We started William on Azythramycin immediately. He has been on this medication for 1 week now. It will be months before we see an improvement and we are told that he can get worse before he gets better as the bacteria fight hard against their own destruction.

Lyme Disease can be devastating. The Borrelia burgdorferi bacteria can penetrate all the tissues in your body and cause devastating neurological symptoms. In William's case, we believe his immune system kicked into gear in response to the invasion and got confused and started attacking his own nervous system (CIDP). We are hopeful that treating the lyme will relieve his immune system of the responsibility of attacking the Lyme and allow it to relax enough to relinquish its hold on his nervous system.

Please read up on Lyme Disease and know how to protect yourself from its devastating effects.
http://www.lymediseaseassociation.org/
http://en.wikipedia.org/wiki/Lyme_disease
http://www.cdc.gov/ncidod/dvbid/Lyme/

That new-fangled money concept...

We found this quite amusing...



Should we be worried that the audience doesn't find it so funny?

Kid Prayer

We've recently been blessed by our children wanting to say Grace before our meals. To this point, when we asked if they would like to say the blessing, they replied with, "I want you to" or "I don't know how to." I figured no good could come of us forcing them to pray, so we kept leading by example and practicing with them when the moments arise.

William broke the dry spell with such a sweet prayer. "Thank you, God, for giving me a brother and a sister, a Gramma and a Grandpa, and a Mommy and a Daddy. I love them a lot." He completely forgot the food sitting in front of him, but we'll take what we can get. Since then, he throws in gratitude for any other special person he happens to be thinking of at the moment...and we're still forgetting the food. Mary has gotten on the bandwagon and we give each a turn to thank God for their blessings at meal times.

Tonight Mary said, "Thank you for my mom and dad, for my brothers because I really like them and like to be with them...and sometimes they do things that I don't like, but I like to be with them, even though they do things to bother me. Help me with that, when they do things." Sweet, and genuine. To which, William replied..."Thank you for my mom and dad and a gramma and a grandpa and my brother and sister. Sometimes they do things to me. Amen." We couldn't help but silently giggle at the contrast of Mary, who was so thankful for her family and seeking God's assistance in dealing with the things they do to bug her. Then William, almost with an air of tattling. "You gave me them, and they bother me...get 'em. Amen."

I'm just thrilled to hear them pouring their little hearts out.

A little lightheartedness

Robert likes to sing. And, he does requests. He also makes requests.

At least a few times a day, he will approach me or Doug, usually with a blanket in hand, and he requests "Rock a Baby." I've learned that the baby he would like rocked is himself, in a cradled position. He inevitably follows that request with "Twinkle Stars in da Sky." We finish the trio with "Happy Nose." Now, I required a translator (Gramma) the first time he requested this song as I could not think of any nursery rhymes or children's songs about a nose. We did eventually figure out that he was seeking "If You're Happy and You Know It." He only requires one verse (stomp your feet), so he can wiggle his feet (after all, you're cradling him like a baby) and add the sound effects, "boom, boom!"

Now, if you get a couple of people in the room, he just might sing for you. If you've got a piano, then you're in for a real treat. Last Sunday, he began his act with a new song, sure to be a hit across the nation, or at least at our friends', the Hebert's, house. It was a ballad, in an unusual key. The lyrics were the catchiest, being about our friends' dogs. "...Walter is black, Finnegan white...lick the nose...haha feet......um...wagg-a the tail...Finnegan...Walter black..." It is an inspiring number. The chorus is extremely "colorful." This 90 second ballad is like new every time he performs it. He'll finish his act by taking requests. We stick to our favorites, like Rock a Baby, Twinkle Stars, and one of his own creation, "Jesus of the Bible."

Next time you catch his attention, ask him for a live performance...he's likely to oblige.