As tends to be my pattern, I find the more that I write on my blog, the easier it is to write on my blog. Once time passes, however, the list of things to write about builds and becomes more complex and the task of updating my blog becomes more daunting. But I want to make sure not to let too long go, less because I have such avid eager fans, and more because this blog is my little scrapbook or journal and I value having my entries to look back on. And with my lofty goal of writing my book always being in the back of my mind, I want to make sure I do not let whole chapter go undocumented. So, an overdue update on life lately...
It always seems to make sense to start with Mr Max who is defining himself as the star of the story of our life. He is doing really well at the moment, but has, as most of you know, has an eventful past month with a 15 night hospital stay for a stomach virus. I suppose really his hospital stay was for dehydration and declining kidney function secondary to his stomach virus. From what we so far seem to understand, Max's kidney seems to be a bit dramatic and prone to stressing out. Which is actually pretty hilarious if you know Al and I because one would assume that my kidney would be the dramatic emotional one and that Al's kidney would be laidback, calm and slow to react. But, in an ultimate case of irony, Addie's new kidney seems completely unfazed and rock solid, whereas poor Max's seems to have a bit of a meltdown and pity party for itself quite frequently! So any time Max gets fevers, gets dehydrated or just generally doesn't feel as well, we see his kidney acting up in labs. Which seems to earn him long hospital stays. Thankfully his kidney perks up with heavy hydration and better health and we don't seem to see an overall kidney problem. But every time it happens, we have to take it seriously and unfortunately we have to panic over the dreaded 'rejection'. If you thought fear of rejection was a problem only plaguing teenage boys near prom time, you should just meet organ recipients! Thankfully about the time we are going to have to do a kidney biopsy and really look into rejection, Max's kidney seems satisifed with the level of attention is has raised and begins behaving again.
We certainly hope that a lot of this is still post transplant sensitivity and that Max's kidney and his tendency to get infections will settled down. I do suspect though that when Max does get sick, it will more likely be serious and involve longer hospital stays. Between his emotional kidney and his cerebral palsy, I think hospital stays are just going to be a part of his reality. And when it is happening, it totally sucks. Hospital stays are exhausting and scary and frustrating and we hate when our family is separated. But once he comes home, we are happy again and the frustrations quickly become distant memories. So far since transplant Max has spent about half his nights in the hospital but we do expect (or certainly hope), that as time goes on these hospital stays will become less frequent and the happy days of us all being home will become the norm. Because when things are good with Max, they are GREAT. He is smiley and delightful and easy and loving. Our home is so much better when he is there and without dialysis, instead of him being hooked up and unhappy, he is just hanging out smiling and being a part of everything. So as hard as these hospitalizations have been, it only takes a day of wonderful home life withou dialysis to remember that this has been totally worth it.
I will hopefully write a full proper post about the very exciting milestone that we are now within a week of- Addie's 1 year kidney anniversary. It is hard to believe that it has been a whole year since we were packing for California, juggling two 1 year olds on two different types of dialysis. We had actually been warned about all the complications and difficulties that can happen in the first year after transplant. Warnings that, now that we have been through Max's transplant, seem very fair and logical. But in reality, this year for Addie has just been amazing and easy and pretty stressfree. Addie is pretty much one of those awesome feel good stories about how a transplant can completely change someone's life in an instant. Organ donation is truly a miracle.
As for all other things Addie, she is such a delight. She still has her two year old moments but the tantrums are fewer and the laughter and chatter constant and precious. I love how she is developing her own little personality and sense of humor. Instead of laughing just at being tickled or things that are obviously funny, she has these quirky little things that she finds hilarious and we love watching her become this clever little person. Talking is coming slowly. She is now very vocal, no longer a quiet little thing, and good at 'using her voice' to ask for things. This is definitely progress and now we are working on replacing her gabber with true words. Hearing loss has definitely been a difficult hurdle and it can be disheartening and frustrating at times. But Addie has a great speech therapist and she wears her hearing aids all the time (well except for the time she thought it was hilarious to throw her hearing aid in the toilet... hmm, one of the less sophisticated aspects of her new sense of humor!) So no doubt talking will come and probably we won't be able to stop her then! Addie still does not eat which I always forget how weird that is to people. But yeah still have a long way to go on that but she recently has started with a new feeding therapist so hopefully that will take off soon. We need to tube feed her less for sure because she is never hungry so this summer I am going to make that my project to try and get her eating.
I had a wonderful weekend last weekend going to Scottsdale, Arizona for my future sister in law's bachelorette weekend. It was my first vacation sans babies since they arrived and it was a wonderful break. I took off the kidney necklace I wear all the time and left it at home so that I would not lose it and also as a symbolic reminder not to talk kidneys and medical stuff all weekend! It was weird and nice to reconnect with myself and remember there is more to me than just mommy me. The girls were so much fun and I loved them all and thoroughly enjoyed sunbaking, a massage, nice restaurants and sleep ins. It was totally relaxing and a much needed recharging after a difficult few months since Max's transplant (or more accurately, a difficult over two years since they were born!) But, I was also happy that I was really ready to head back on Sunday. Max and Addie, and honestly all their medical and developmental issues, are such a part of me and I felt a little empty without them around. I missed them and I was ready to re-enter the world of baby cuddles, laughter, toys everywhere and the constant background music of Elmo's world. Of course that much is obvious- all mommies miss their sweet babies when away. But I also was ready to get back to feeding tubes, medications, analyzing labs and pretending to be a baby therapist. All the things which admittedly can be stressful are also what have made my life interesting, and they are what give me purpose. I think a chance to breathe and be away from my crazy life just made me that much more ready to come back and embrace it.
Well as usual a very longwinded way of letting you know that we are all doing well and are happy. And definitely counting down until summer vacation all together in Houston, no surgeries and hopefully minimal drama!
