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Jan. 28, 2009
VERY big day tomorrow - please pray
It has been beyond crazy at our house lately!! The history kit closeout sale we've been having has yielded about 6-8 months worth of sales in the last 2 weeks. We sold out of kits within just a couple of hours but have been ordering supplies and building kits and shipping orders like madmen in an attempt to fill as many of these orders as possible. We are thankful for the work and the business, but we'll also breathe a sigh of relief when this is all over.
Tomorrow is a huge day for lots of reasons. First, it's Mary Faith's first birthday!  I just can hardly belief that my little princess is already turning a year old. It really almost doesn't seem possible.
The second issue is that we have finally been approved for Noah to start getting Sub-Q Ig. He's been getting IVIG which is an IV form of human immune globin. This is done every three weeks now and requires an all-day trip to Greenville. There are lots of unpleasant side effects, it's disruptive to the family, and the big huge boost gradually falls lower and lower - which means that Noah often gets sick right before his next dose is due. He used to get it every four weeks but was being consistantly hospitalized on week three, so we dropped it to every three weeks. Lately he's had to have it at 2.5 weeks a few times. The Sub-Q Ig is given weekly at home. It's a smaller dose (less side effects) given more frequently (more stable levels in his blood). The fact that we can do this at home means less disruption, less exposing Noah to sick kids at the peds infusion center, etc. The big downside is that it doesn't go IV (into his central line). Instead it means sticking at least three needles into (gulp) his tummy every week. We'll put numbing cream on his little tummy so the needles shouldn't hurt, but there will be uncomfortable whelps afterwards. (And, of course, there is no numbing cream for my heart which hurts at the thought of putting needles in his little tummy.) We feel VERY strongly that the benefits far outweigh any small discomfort on Noah's part and are thrilled that we got approved.
The first dose has to be given in Greenville under doctor's supervision. There is a risk of some very grave reactions with the first dose, so it's essential to have a doctor standing by. Once we get past the first dose, we'll do the second one under supervision of two nurses in home, then we'll be flying on our own from then on. We'll have epinephrin on hand in case of a reaction at home, but don't anticipate a problem IF the first dose goes smoothly.
Noah will be getting his first dose tomorrow afternoon in Greenville. The medical folks are a bit nervous because Noah has so many allergies to drugs - in fact, we are using a totally different protocol than is usually followed for this reason. (Don't get me wrong - his doctors are thrilled he's getting Sub-Q Ig, they are just a little antsy about this first dose.) Part of the different protocol has involved letting Noah go past his usually scheduled dose of IVIG to run down the amount of Ig in his blood. This has put him at a much higher risk of getting sick, but we've been sticking close to home and it looks like we've made it to the finish line! :-)
We deeply, deeply covet your prayers tomorrow. Side effects could range from the merely unpleasant (pain, vomitting, etc.) to the very serious. We're praying for none at all!! Jeff and I both feel that this is the right thing to do, but I have to admit to a sense of unease about tomorrow.
Of course, if you're a mommy you've probably thought of another prayer request - that I can give Mary Faith a happy birthday even being gone all day. I'm bringing her with me, of course, but won't get home until dinner time. I'm hoping I show up at home before the whole family shows up for her birthday dinner LOL. I'm almost through baking her cupcakes and hope to frost them before I go to bed tonight. The house isn't exactly "party ready" and we've had cold rainy days which seem to produce draggy cranky kids who are less than enthused about helping clean up.  Hannah is coming to Greenville with me tomorrow to help with Mary Faith when Noah needs me, so it looks like it's going to be up to the guys to get things ready for the party. Gulp. Jeff is the King of Delicious Smoked Foods and he's volunteered to smoke some chicken. I've got homemade rolls in the freezer and my mom is bringing a salad. Add the cupcakes and some ice cream and I think the menu is all squared away.
I know that Mary Faith won't remember tomorrow, but it's really important to me that her party is great. She is the dearest little thing that you can imagine and she has been so consistantly patient and flexible and happy during so many days spent in clinics and doctor's offices and hospital rooms. I wish we could have scheduled Noah's treatment for a different day, but this seems to be yet another time where we need to do the big balancing act.
I'll update tomorrow or Friday morning. I have a bunch of pictures all set to share (yes, including one of me with short hair!) but just haven't had much time to breathe lately.
Mr. Noah has dissolved into a quivering ball of despair because I won't let him eat Mary Faith's cupcakes that are cooling on the table. Gotta go.
Blessings,
Kate |
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