Tuesday, May 5, 2009

A rough week is finally over!

Last week was a doozy!

On Saturday, we got news that my father-in-law, "Papa" to my boys, had lost his battle with myelodysplasia. We are all devastated and will miss him dearly! Needless to say, most of the week was spent in mourning and spending time with family and friends remembering this wonderful man.

And, because PIDD always seems to have perfect timing, that very evening I ended up in the ER with Jeremy with a 103 fever... poor thing was moaning and begging me to take him to the hospital (never a good sign). Turns out his neutrophils had plummeted again, and now his general white count and platelet count were also low. We narrowly escaped admission, I think mostly because the doc knew about what was going on at home. Jeremy was given IV antibiotics and fluids in the hospital, and we were sent home on an oral course and told to follow up with Hematology (yet again).

Hematology wanted Jeremy checked again on Friday, and kept out of school and crowds until his numbers improved. Like I said, great timing! Because of this, he was unable to attend the funeral for his Papa and was very disappointed! Thanks to some wonderful friends, we were able to arrange childcare so that the rest of the family could attend (THANK YOU Barbara, Mindy and Meg!!! You are all amazing!). My Dad, "Poppy" helped out during the week.

Friday did hold some good news for us... Jeremy's ANC was on it's way back up... not normal, but it never is for him. Thankfully his restrictions are now lifted and he is back in school! He will follow up with Hematology in June and at that point, he will have a bone marrow biopsy scheduled to investigate why these dips keep happening and why there are other cell lines now involved. Please keep him in your thoughts and prayers.

Thanks for checking in!

Tuesday, April 7, 2009

Welcome to our Blog!

Well, this is our first entry in our new blog...

As the title implies, this blog is dedicated to my three beautiful boys who live with Primary Immunodeficiency Disease (PIDD). They are: Benjamin (9 years old), Jeremy (7 years old) and Matthew (3 years old). We have created this blog so as to have a place to update family and friends on their health and progress. From time to time, Ben and Jeremy may wish to share something as well.

Thankfully, there is not too much to report at the present... all three are doing well now that they are on subq IG. Their infections have been pretty well-controlled as long as we up their doses every so often to allow for growth :) Once in a while we do have break-through bacterial infections, and they still seem to catch EVERY virus known to mankind, but all in all it has been a tremendous improvement in our quality of life...

Oddly enough, after years of trying to get myself diagnosed with a PIDD, I am finally getting a little attention from my own doctors! Now that the boys are relatively stable, it seems that I am sick more often than they are!! Hmmm.... there just might be something to this... stay tuned!

Thanks for peeking in! I'll try to post updates every so often, so come back soon to learn about our journey of HOPE! And BTW, check out the videos attached of Ben & Jeremy in Disney fighting Darth Vader... reminds me of how brave they are as they battle PIDD everyday!

Many thanks!