6 months today!

It is incredible to think that at this point six months ago we were hours into the transplant, waiting for news.  Kids playing in the park always looking up the hill at the hospital prepared to sprint with news.

As we think back it sure seems like a long time ago.  Unsure why or if that is good but it does. The details of that day have not faded they are all as vivid now as they were then.  It just seems like that was a different life.

Life today is amazing.  Laura could not be doing any better, seriously could not be doing any better, her tests are through the roof. As we take small local trips they all have activities planned, paddle boarding, biking, hiking and food.  All simple things that most take for granted but were not even options.

Weekends now start early with flag football and then the rush to soccer.  A birthday party or basketball tryouts squeezed in for good measure. The chaos of kids and sports is in full swing and it is pretty great to do it as a family.

Six months post transplant is another milestone. One of many on the road map but a big one.  This one will enable us to travel a bit more in the Continental US which is very exciting. What ever that next trip is we know it will not involve letters to airlines to allow oxygen, letters to hotels to receive oxygen shipments, wheelchairs and a full piece of luggage with just supplies. The fact that we have options is and of itself pretty cool.

The comments, emails, cards and general kind words that are shared with us on a regular basis are terrific.  Those comments and your support are enabled us to achieve this milestone.  We do not take it for granted that we have the best support network possible.

Cheers

The Zs

A busy Summer

It has been a couple of months since the last post and from what I have been told, it is way over due.  My apologies.

What a summer!  To say our world has been turned upside down would be an understatement.  To say it has been for the good would also be an understatement. It has been amazing.  Laura is doing amazing. Everett is going great and everyone is happy!

If you were to meet Laura today you would have no idea what she has gone through in the past 5 months. She is back in full force with a big smile and vibrant laugh.

Since coming home in June she has been on a path of continued recovery and improvement. With each passing month she gains more independence.  From being able to exercise (hour+ a day), drive (oh to feel like you are 16 again) and actually do go out and enjoy life with friends and family.   Cooking is fun, food tastes good and the thought of activity is exciting.  

Her new normal could not be more different than it was. As an example today Everett had an 8 a.m. flag football game (a pick6 was in there), 2 o'clock basketball tryouts, overlapping with soccer and the normal errands. Drop E off at 6:30 and off to the city for dinner (with plans for her first cocktail!) Impossible to do one let alone all of them 6 months ago.  

As for that transplant thing, all is great.  Weekly blood draws are still a requirement and she still has a port to manage but that may be removed soon.  They did remove here g-tube as tube feeds are not necessary.  

The medical routine still consists of monthly clinic visits with both the CF and the transplant team.  A means of measurement to test is based on an predicted status.  As an example they may predict here lung function to be at 95%  if she tested at 97% they would consider her 102% of predicted.  In the last test Laura was 100%+ of predicted on every test. The progress she has made has been as good as anyone could ever have been imagined.

As we move forward, they will continue to monitor drug saturation levels and continue to optimize her meds.  Today she is taking 50+ pills a day.  As time goes on that number will decrease a bit with the optimization. She has a solid routine now and it is just part of her day.  The changes in meds are still making managing her blood sugars hard but that too should become more regular with time. All in all medically speaking she is doing great.

We won the lottery of life.  Not a day goes by that we do not appreciate what we have been given.  It is fun to watch the reactions on people faces who do not see Laura often or have not seen her since the transplant.  The amazement, excitement and joy in their expressions are awesome.  All of you were as invested in this as we are and to celebrate the success together is great.

As always a huge thanks to everyone for their love and support.

Hope you are all well. Enjoy life!

Cheers