Thursday, October 29, 2009
Another week at home
Linley and Piper...or "mini-Susanna" and "mini-Chad" as a friend calls them.
Well, we are not back in the hospital as expected. When we went on Monday morning, Pipers blood counts had dropped again and they cannot begin the next phase until she is up to a certain level. So we are home again for another week and while I most prefer to be home with my 2 girls and husband, I do want to get going with all of this. We know that the first 6 months are the most intensive and important and I just want to get it all over with. That said, the extra week at home couldnt come at a better time. Linley is out of school for fall break so we are able to spend even more time together. Halloween is Saturday so now I get to have both girls to go trick or treating with...pictures will come of them in their respective costumes soon. And Chads birthday was yesterday so we were able to celebrate as a family and still squeeze in a Date Night last night for me and him. Wonderful!
Pretty much Piper is naked unless we are in public. The air is the best for her bum but just in case we have to cover her up we have a wicked mixture of neosporin, desitin maximun relief, A and D ointment and some perscription stuff to ward off a yeast infection. I can now add pharmacist to my newly acheived "nursing degree" and "diapering pro of the year".
Linley as usual is rolling with the punches. She is an incredibly flexible 4 year old and I am so blessed to have her sweetness in the midst of all of this new, sometimes chaotic life. As some of you know she is Growth Hormone deficient, meaning her body does not produce the hormone required to grow naturally. She has the growth hormone injections each night and since beginning last November, has shot up and is now in the 2% for both height and weight. Unfortunantly, her insurance dropped her GH coverage about 3 months ago and even though we have jumped through all of the hoops they asked us to, we have yet to receive a new shipment of the medication. Please pray that it gets cleared soon.
We are still praying that God heals my sweet Piper. When you look at her she is such a normal 3 month old, its hard to remember that there are life-defying cells running through her veins. And being at home makes it so easy to forget the battle we are faced with...which is nice sometimes and disappointing sometimes when we inevitably are reminded of it.