Tyler last night said, "I guess I can finally settle into the idea that we CAN have Christmas this year." Here it is December 14th and we just put up the tree, although it still is undecorated, the lights went up on the house last night, and we're finally feeling like we can let a little guard down to celebrate the season. We've been so gun shy to do the normal things in life because we're so scared that at any given moment we could end up back in the hospital for the next round of........
The original plan was that Preston would likely have his nephrectomy in November/December and then move forward with the transplant around February/March. I think that he has shocked the doctors that he has been able to maintain as long as he has on his albumin/lasix infusions without the risky complications that go with. We hold our breath daily and know the risks of infection, blood clots, etc. He seems to be doing so well that it's hard to want to move forward with the kidney removal. So because we were kind of planning to spend our Holiday's in the hospital, it almost doesn't feel really yet that it's really Christmas.
We've become fans of a few other Parents' blogs that have babies with CNS as well. The one family with twins now have both children transplanted! It's been a little silent celebration for us that their second baby is now with his new kidney and past one really tall hurdle. We've never met, or communicated with this family, and they may never know how HUGE of a help they have been for us in knowing that there are success stories. I admire their strength in having two babies to care for, both in different stages and having such different medical needs. I am very thankful to only have one baby with this condition.
So everyone asks, "How's Preston Doing?" I feel like I have the same canned speech in telling everyone how he's doing, and I hope people don't mistake that for an unwillingness to share or that I'm being impersonal. I basically tell them that he's growing well, eating like a champ, loves to read like crazy, loves his Dad like crazy, nearing his weight goal in needing to be 22lbs to be prepared for the surgery. I don't go into huge detail, because I also don't want to seem like the obsessed parent who is overly involved in their own child, but I guess that's my own insecurity?
So aside from the generic canned speech......Preston really is doing awesome. There are some milestones that he's a bit behind in, and there's no doubt that the prematurity and the excessive time in the hospital will set him a bit behind. He still is not eager to crawl, hates being on his stomach, we think it's because of his central IV line, he has some weakness in his right hand and arm, stiffness in his left leg attributed from his brain bleed. Once in the sitting position, he'll sit by himself totally content for a LONG time and play with his toys, reach as far as he can sometimes falling over. We trick him into crawling for things on the couch or bed where it's more squishy and he doesn't get as frustrated. He's pulling to stand and wants to stand, starting to motor his feet and walking with help. We drive our PT nuts because he's skipping milestones (like the crawling and sitting up on his own). I know it's important that he learn to pull him self up off the ground, but right now, he just has no interest. So more PT in helping to strengthen those extremities so that he'll be able to "toddle" on his own.
It's really hard to admit (both to myself and to other) that Preston may have some physical disabilities. He will be getting a splint for his right hand so that we can encourage him to use both hands instead of only his left hand, and it sounds as if he will have splints for at least his right leg, if not both legs, so that while he learns to walk he can learn to use both sides symmetrically. I know many friends and parents say that they as kids or their kids work some sort of device as children, and then grew out of them later in life. I sure hope this is the case for P, but as we have learned, only time will tell. I know that life is so uncertain and you never know what hand you will be dealt, but I want a few more Aces, and a few less Jokers darn it.....
So in reflecting back on this year, I'm very thankful for my time at home, my wonderful family and the support of my friends, family, and co-workers. I'm thankful for this crazy life lesson that for some reason God has given to me, because I really do believe that I am a better person, mom, wife, sister, daughter, co-worker, boss, etc. because of it.
So, in looking ahead, my goal for the future is to blog more not only to keep you all in the loop, but to document this journey for Preston so that he can later see how he started as the tiny 4lb 12oz super sick baby and became the awesome man that I know he will someday become.
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