Wednesday, June 6, 2012


This morning Addie had one of her clinic visits and her nurse practioner came in and said 'Well aren't you thriving!' to which Addie of course flashed her a huge smile and went to her for a cuddle! I loved her word choice because it is definitely true! Addie is thriving indeed! 

In general after we hit about 10 days post surgery, Addie has just been unbelievably happy and full of energy and enthusiasm.  She had her hiccup last weekend with a urinary tract infection which was scary but a very typical complication.  She has a catheter that was surgically placed still in place and is on heavy immunosuppresant medications so infections like that are a fairly expected problem to encounter at some point.  She felt pretty awful for a day or two but perked up once the antibiotics hit! And has just been non stop smiles, waves, kisses, giggles and full blown belly laughs ever since.  She is loving having new visitors every week- since being here she was had not only me and my parents but my Aunt Debra, my brother Adam, my Uncle Mark and Aunt Kim, Miss Becky, and currently Al's mom and sister (her Marnie and Aunt Emily).  Next week my friend Shannon comes in and after that Adam returns with his fiance Jenny.  And then it's pretty much home time.  So we've been very blessed by all the visitors and they bring such enjoyment to Addie and have made this time a very happy time for Addie.  She hasn't just been sitting around in the apartment but being played with by her loved ones around the clock!

People say that after transplant the patient feels better than ever and gets this new energy and lease on life and we have certainly seen that with Addie!  A little girl who is 5 named Bella got a transplant one week before Addie at our hospital and it's amazing to hear her describe it- she says she feels so good and food tastes so good and she has so much energy and feels better than ever.  Addie can't verbalize it quite like that but her laughter tells us the same thing!  You can tell she suddenly feels like babies are supposed to feel and it fills her with joy! And of course those of us watching her even more so.  To see a baby who has never been healthy, who was born sick and has been reliant on intensive medical treatment every day for nearly 18 months, suddenly be well and feel great and have this normal life is just a miracle. 

One of our kidney Doctors told us months ago that transplant was just trading one set of problems for another which we found super encouraging and inspiring! Having now gone through life with bad kidneys, peritoneal dialysis, hemodialysis and transplant, we feel we are somewhat of experts of renal treatments and I will say that in the most literal sense, he is correct.  Transplant does bring NEW issues/problems such as being immuno compromised and having to ensure she takes in enough fluid to satisfy an adult kidney.   So there are new things to follow.  BUT, they are just nothing in comparison to the issues on dialysis and the demands of being on dialysis.  So I suppose we did trade problems but we traded a huge list of big scary frustrating and quality of life limiting problems for a small list of manageable problems so we just cannot express enough how amazing this transplant has been for Addie and how grateful we are that it has happened for her and been so successful!

We are here in Palo Alto for another appr 3 weeks just to remove her catheters and make sure her medications are all stable before they release her.  She goes to the doctor twice a week to get blood draws and see her team.  The team here is fabulous and have these specialized tranplant nurse practitoners and physicians assistants that have been instrumental in this process.  We really enjoy seeing them and appreciate the balance they are finding between cautiously following Addie and letting her have lots of doctor free play days!  She is also getting lots of physical therapy, occupational therapy and speech therapy.  Addie has some delays from being in the hospital so much and only just now feeling really great.  And she is already making huge strides since transplant but the goal for the next few months is to get her fully walking independently, get her eating and get her talking.  We're not rushing those things, we know they'll come and we are just so happy to see how much progress she is making! Therapies are always play oriented and Addie generally loves getting to go play and rarely realizes she is learning new skills in the process!

Meanwhile back home, Max is doing well.  It's easy to lose sight of his progress and milestones while Addie has been involved in this huge life altering miraculous change.  But we have learned over the past year and a bit to embrace all small miracles and steps of progress and Max has had plenty of those.  In January Max was on his machine nearly 21 hours a day and now he is down to 16.  Those extra 5 hours have allowed him to go out more and eat out and play more.  His super stroller arrived and he is loving being able to sit upright and see the world from this new perspective.  Al reports they strolled him around Wal- Mart and he loved it (probably judging all the crazies at Wal Mart from his new vantage point)!  He also has been doing really well with his breathing and it has been over 4 months since we had to give him CPR at home and this has been a huge relief for us! They told us his airway would harden around a year to 18 months and they were right.  He no longer has to sleep with an oxygen monitor and Al feels safe to sleep downstairs and not next to his crib. We actually felt comfortable to leave him with his grandpa while we went to dinner when I was home.  So while not a sudden huge change like a transplant, this gradual hardening of his airway and lack of breathing episodes has made a huge difference in his life and of course in ours. 

So great news all around!  We are so appreciative of all the prayers and support the past month, of all the visitors and text messages and phone calls and facebook cheering on.  It's been wonderful to be able share these highs and blessings with people who have stood by us and prayed and loved us during the lows and scary times.  No doubt we'll have plenty more of both but for right now we delight in the good and enjoy this long awaited new life for Addie!

(yes, she is being trained to take over the blog soon!)


Auntie Peg said...

Absolutely marvelous news! You go, girls, and Max, too! Love from Auntie Peg

EssMick said...

So thrilled the news is so good - you have two such beautiful and special little people Steph!

Lindsay said...

Great pictures and a great update! You are just such an awesome Mom, Steph! I am so proud of you and how you & Al handle everything that has come your way. You are always on my mind!!