Friday, January 1, 2010

2009 in Review…

Well 2009 was a very busy year… full of joys and challenges, and knowing us of course, also full of doctors!

Benjamin is now 10 years old and is getting so tall! I think my mom is shrinking, because he is actually taller than she is now! He is still an avid reader, preferring the fantasy genre (Harry Potter, Lord of the Rings, Artemis Fowl), and believe it or not, his list of books he wants to read next is longer than mine  Ben is also once again competing with a Destination Imagination team (which I am managing this year) and I can’t wait to see what they do this year! Baseball is still a great love, as is Cub Scouts… it’s hard to believe he will be a true Boy Scout next year… And as if that’s not enough, Ben has just acquired a guitar and keyboard for which he is begging lessons (note to self: asthma & the trumpet do not make good bedfellows)! Health-wise, Ben has been the most stable of the 3 boys this year. His infections have been very well-controlled with his weekly SubQ IG treatments, his blood counts have stabilized, he had only one suspected seizure this year, and his asthma is also well under control. Migraines continue to be an almost daily problem, however, and we still struggle to find a medication that will work for longer than a month… Ben continues to amaze us with his intelligence and his passion for math and reading. He is a huge help to me around the house, and I am so proud to have him as my son!

Jeremy will be 8 at the end of this month and is also getting incredibly tall. He still has a passion for animals and all things natural that rivals Jacques Cousteau or Steve Irwin! He still prefers to read an animal encyclopedia or watch a PBS documentary over storybooks and movies… Jeremy has similar activities throughout the year: baseball, Destination Imagination, and Cub Scouts. He is also hoping to learn to play the newly acquired family keyboard  Of the 3 boys, Jeremy had the most challenging health issues this year. He has had a few nasty break-through infections despite his weekly SubQ IG therapy, and he has struggled throughout the year with very low blood counts (white cells, neutrophils & platelets), requiring homebound isolation on a few occasions. Because of this he underwent a bone marrow biopsy & aspiration over the summer which thankfully yielded normal results. In addition to his CVID, he is now also being considered for Schwachman-Diamond Syndrome (SDS) which may explain his blood count issues, fatigue and inability to maintain his weight. He is being watched closely and may need annual biopsies to keep an eye on things. Thankfully, his asthma and allergies are well under control, and he has had no seizure activity this year, leading our neurologist to believe that the 3 seizures he had in May ’08 during a long illness were caused by an unrecognized case of viral meningitis. Jeremy is full of life… and has an empathy for the natural world that is truly inspiring. I have learned so much through him and I have no doubt that his passion and intelligence will take him far.

Matthew is now 4 ½! It’s truly hard to believe that my baby will be kindergarten age next fall! Matty’s favorite things are still anything with wheels… especially the Cars movie characters and Thomas the Tank Engine. He is enjoying preschool and making good progress in his speech and sensory therapies. It will be interesting to see how his kindergarten screening will go. Even with a big dosage increase to his SubQ IG, Matthew has struggled with the most infections this year. Thankfully, although several of these infections were stubborn, none required hospitalization. I can finally say (without jinxing 2009) that we actually made it an entire year without one of the kids needing to stay overnight in the hospital! This is the first year EVER that this has happened since we had children  Matty’s blood counts have fluctuated throughout the year, but not as dramatically as for Jeremy. His asthma and allergies are doing well. Matthew is my little angel (OK, my little devil with angel-wings)… he is always ready for a bear hug and can always be counted on for a smile or laugh. He has an amazing sense of humor for a 4 year old, and his energy knows no limits!

As for Neal and I, 2009 seemed punctuated by medical challenges. As we rang in 2009, both of our fathers were seriously ill. Neal’s father passed away in April, and my father has spent most of the past year in and out of hospitals, and undergone 5 surgeries. He will have surgery again this coming Monday, and then hopefully 2010 will bring with it healing and rest. Our moms are both healthy… Neal’s mother coping with losing her husband, and my mother living with the challenges of Alzheimer’s, but otherwise well. We dealt with news of autoimmune issues for me this year, but thankfully I have not had too many problems with pain or complications. I still struggle to get adequate treatment for my own PIDD, and my big resolution for 2010 is to focus more of my time and energy in getting my own health under better control.

We continue to be grateful for Neal’s job stability during this terrible economy, and for all of the wonderful people I have met through my cake decorating business (now on FB)… While it hasn’t always been easy, it has been much, much worse, and we are still so very fortunate to be surrounded by such wonderful friends and family who are always there for us. Thanks to all of you, my work with Stefani Bush and Team Hope was recognized by the IDF at their National Conference this year! Our 2nd Annueal Wine Tasting Benefit was a huge success (raising over $11,000 for the IDF in a bad economy)… save the date: Saturday, May 15, 2010 will be the 3rd Annual Wine Tasting! We continue to sponsor blood drives in the local area and are grateful to all of you who have come out to donate throughout 2009. Thanks to you, Team Hope has helped to collect over 1000 pints of blood! If you consider that each pint can save 3 lives (or 4 children), then together we have saved 3-4000 lives… and that is just truly awe inspiring to me.

As we enter 2010, I wish all of you peace, health, and prosperity!

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!