Wednesday, December 26, 2012

Merry Christmas!!

Preston's first Christmas...I knew it was going to be pretty wonderful being a parent, but today my heart feels so warm. Although my parents are both recovering from colds and weren't able to come over today and we didn't do our normal Christmas scurry to all of the various family members houses, it felt amazingly nice to stay home with Preston and reflect on our year, and be thankful that we have him at home in our arms.

He is blossoming like crazy the last two weeks and getting interested in standing and pulling up, wanting to do the motions of walking (assisted of course), and tolerating more time on his stomach, reaching for things and attempting to crawl. We've come to terms that the three months inpatient and his medical condition(s) will likely mean he will take longer meeting his milestones, but we've watched him come along way. He is saying Dada, Da do, Baba, dog, book and mouths mom...but won't say it......darnit. He recognizes us in pictures and lights up when he sees us after arriving home from work.....and that feels so amazing.

Sometimes it takes a little reminder from someone that isn't by our sides daily. Tim, Tyler's dad was down from Idaho today and mentioned how impressed he was with the progress that P has made in three months time since his last visit. And he reminded us of what Preston's capabilities were just that short time ago and how much more he's doing now.

Also today we find ourselves reading a blog of another family who's baby was transplanted this past week down at LPCH. This baby is a twin and his sister had a transplant earlier in the year and they are going through the same experience again with their second twin baby. I'm sure it's extremely hard to be inpatient for Christmas.....well, it's tough no matter what day of the year it is, but Im sure its extremely hard for them today. The baby had some complications earlier in the week and briefly stopped producing urine, which is always a worry with a transplanted kidney, and so Tyler and I were both hoping for the best and then were relieved to find out that he was creating urine again. It's amazing how a little pee can make you excited, especially when your rooting for, and praying for a family that you've never met. I know I've said it before but its been a huge help to know we're not the only ones going through this and that it is being treated by world class doctors so close to home.

As I get ready for bed tonight, I find myself wide awake, my mind is racing. I had such a wonderful day here at home, even if we did just stay home, relax and not do much. I won't be sleeping anytime too soon. My racing mind is thinking about what's to come, what lies ahead and the planner in me is trying to think....just how are we going to do "this". I guess it's knowing that Christmas is now done, another year has almost gone, and we have some pretty HUGE things were about to encounter this coming year.....and I feel like I'm going into it with a blindfold on. Since we know that his surgeries are inevitable and his kidneys aren't going to fix themselves, I've been trying to mentally prepare. Preston has come so far this year already and I know that we will have a few bumps in the road but it (hopefully) will not be as trying as the as trying as this past year.

So everyone, hug your babies matter how big/old they are, count your blessings, live every day to the fullest, and just ENJOY the ride.......MERRY CHRISTMAS!

Friday, December 14, 2012


It's getting to be Christmas and I have a lot to reflect back on this past year.  A lot of wonderful....a lot of not so wonderful, but overall a TON to be thankful for!

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.

Relinquish the Control

My mind has been the biggest tornado lately. So much on my mind and so much is still uncertain of what lies ahead for Preston. Work has been crazy busy and thanks to Chelsie, our friend and new hire, we've been able to keep up with most everything and even continued to take on new properties with the management company. I constantly think to myself, am I crazy? Only a crazy person would be taking on additional, new business right now. Preston has not only been a gift, but a true lesson learned for me. And that lesson is: "Relinquish the Control." Tyler's always told me that I have an issue delegating and deep down I've known he was right, but I had no idea how much of a work hoarder I really am/(was?...) Well I have had to get over my habit of work hoarding and I can honestly say now that delegating is getting easier. I have learned to depend on people to help me with things that I never thought I would need help with....even down to the grocery shopping. For the last few years Tyler and I have been on the verge of needing assistance at work with the real estate and property management. Our situation with Preston has forced us...but in a good just let go to the things we cannot control.

We have two appointments coming up in the next few weeks that will likely be an indicator of what's next and we may even be able to tentatively plan for his surgeries, but then again I don't know that for sure and maybe I'm just hoping for some answers. I would love to just get this whole transplant thing done and over so that we can put this chapter to bed. I know that we will never be truly done with doctors and but it will be so nice to see the day when we have an annual, or even a twice annual trip to the nephrologist...

Next week we will be down at LPCH at Stanford for some clinic appointments with the nephrologist, neurologist, endocrinologist. At lease we can try to clump them together to minimize trips. We'll probably end up staying two nights because our appointments are spread out beginning at 8am and ending late in the afternoon. With a 5 hour drive on each side it's impossible to accomplish in one day.

Holy smokes a month has passed since first drafting this blog post and the above is now old info, but still not a lot is unchanged.  Rather than deleting my thoughts I'll post this blog and move forward with the next......