Wednesday, September 1, 2010

Results and Other Fun Stuff

The Immunologist, today, said that L's blood work results came back and everything tested normal, except that she has low antibodies for Hib and Pneumoccocal. ( I am assuming this means there isn't any sign of an auto-immune disorder, but we may have to see what Rheumatology says about that, to be sure.) So basically, when it comes to those 2 vaccinations, she is considered immune compromised. Her diagnosis is called Hypogammaglobulinemia. Say THAT five times fast! Specifically, her immunoglobulin levels are low in the following areas: IGG, IGA and IGM. (That's a note more for me, than for you. I just want to remember this.) :0) Our whole family was sick 3 weeks ago, for a duration of about 2 weeks. Ladybug's illness seemed to go away, and yet 2-3 days later, here she is with a liquidy cough again. (Sorry, for the graphic description.) The Immunologist is concerned about her and has prescribed Zithromax to kick whatever sinus infection may exist, and has sent instructions to our family practice doctor, that he wants her treated aggressively for any and all flu symptoms, coughs, colds, etc. that she gets. The immunolgist says that given her age, he wants to treat these low antibodies aggressively, to stave on any later severity that could progress as she gets older. We are to get her another pneumonia vaccination and then he will do another blood test 6-8 weeks afterward, to see if her body responds appropriately. He will see us back in 3 months, unless she isn't responding to the vaccination, in which case he will see her sooner. He wants to re-test her immuno-globulin levels again in 6 mos. to see where they are at. He said this could all have something to do with her gene deletion, or could be it's own thing. He is going to research more about her specific gene deletion and see what he can learn about it. He instructed us to purchase a pediatric Netti-Pot (spelling??) of sorts, and to use it any time she gets the slightest hint of sickness. He also told us that we need to be careful with her being around other kiddo's that are sick, as she will get the flu, pneumonia or whatever...worse and for a longer period of time than the average person. I told him all about her sleep stuff, and he said the melatonin is really only designed to help people GET to sleep, not to STAY asleep. He said her sleep could be aggravated by her cough and sinus symptoms right now, too! So...next up, we will report back to the Rheumatologist and see if he has anything to add or look into to. Our next big hurdle for her, is to see what's up with her sleep. The Immunologist and I agreed today, that since her sleep meds, weren't really helping her sleep anyway, that having her on them isn't a good idea. They seem to worsen her limb pain. All in all, I feel good about the appointment today. We have indeed found some clues to the puzzle that is our Ladybug! We still have a few missing pieces to find, and we will do just that! If we can get to a point someday in L's life, where she can sleep peacefully, have a day without limb pain and be generally healthy, happy and developing well, then and only then, will we think about resting. I am so grateful that Heavenly Father sent her to us! He knew that I would be the kind of gal to be a squeaky wheel for her! It's the squeaky wheel that get's the grease, as they say! I am determined to be her voice as long as she needs me too!

In news about Snug, Luv, Cuddle and Wiggle...they are happy and mostly healthy! Cuddle Bug still has a touch of a cough, but not near like Miss Ladybug! They have been enjoying our learning time with the "school cabinet", and have been interested in many different things lately! Lincoln Logs are a big hit around here! Snug-a-Bug and Luv Bug particularly love them! Cuddle Bug has been into counting and using a stamp pad and letter stamps lately! Wiggle Bug really like puzzles and books! Both Mr, Snug and Miss Ladybug have been sensory seeking lately, more than usual. I had a nice talk with our OT today, about ways to satisfy their seeking! I also had a nice talk with her about Miss Luv Bug and some calming techniques for her! It was a pretty good day today! :0)

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