WooHoo! Ali is back in Cleveland!!!

We are so excited to be back in Cleveland and that Ali recovered so well from the last surgery. We left LPCH Monday morning to what seemed like a parade route thru the CVICU with all the nurses and RT's waving bye and Ali blowing kisses. The flight was uneventful for Ali but Gavin was tired and putting up a good fight for a nap! The flight and medical crew were great! (Thank you AeroCare - Peggy and Sarah!) We were welcomed back in the Cleveland Clinic PICU with a bunch of hugs from the nurses and RT's! Everyone was so excited that Ali is doing so well - and of course Ali was waving and blowing kisses to everyone!

So the plan is for Ali to be assessed in the PICU, try to switch her over from IV to oral diuretics, and then switch her to a Long Term Vent, and then be transfered to the Children's Rehab Hospital. At Rehab Shawn and I will learn to operate the vent, take care of her trach, set up home nursing, and get Ali back on a schedule. Ali will also receive all her therapies at Rehab -  PT, OT, and Speech. The whole process at Rehab will take 4-6 weeks and we hope to be transfered sometime next week.

We can't wait to all be at HOME again!

P.S. Check out the new pics - clink the link on the right of the page!

The best Christmas present...

...is Ali recovering so well from her surgery. And of course Mammie & Dia flying in on Christmas Day - we were so happy to see them! We all had a great Christmas together. Ali & Gavin were on the good list - they received so many presents from Santa!

More great news...we are departing for Cleveland on Monday morning! WooHoo! Ali is doing so well that it is time to come back to Cleveland and start the transition to get her back in our home. Ali, Gavin and I will be on a medical jet back to Cleveland Clinic monday. Ali will be in the PICU at the Clinic and then hopefully transefer to a children's rehab hospital (part of the Cleveland Clinic) soon where Shawn & I will learn to take care of Ali and her medical needs in a home setting. We are happy that Ali will be able to celebrate her 3rd birthday in Cleveland with her family and friends. 

There are so many pictures from Christmas. Click the link on the left "Family Pics" to see the latest pictures.

Thank you for all the support, thoughts and prayers! We can't wait to see everyone!

 

Christmas in CA...

...would be nicer if it wasn't so rainy and cold! (well cold for CA)

So we are going to stay in CA one more week. Ali is kinda borderline so we decided it would be best to stay rather than rock the boat with a plane ride home. Her fluid balance is getting better, we just want to make sure we optimize all her meds and such.

A few days ago Shawn, Gavin and I went to downtown San Jose to see the light display and the outside ice skating rink! 

Other than that we are just getting ready for Santa!  At the Ronald McDonald house they set up a "Santa's Workshop" and the parents come in and pick out 3 toys and a stuffed animal for their children at the house or in the hospital. The gifts are wrapped and placed under the tree on Christmas Eve and the kids wake to the see all the gifts under the big tree in the Great Room! I can't wait to see the look on the kids faces on Christmas.  The House really makes you feel at home for Christmas. 

I'll post another blog with pics on Christmas Day!

Thanks for all the thoughts and prayers! Enjoy the newest pics and videos.

A race to beat Santa's sleigh

Ali is doing well. The plan now is to fly home this Monday 12/22. So keep your fingers crossed! 

So, this past week, Shawn, Gavin and I went to the Winchester house in San Jose. This house has been known to have spirits haunting the place - all the people that had been killed by the Winchester gun. So Mrs. Winchester built the house non stop 24 hours a day for 38 years until she died. This house is known for all the doors that open to walls and the staircase that goes to the ceiling. We had a great tour guide. Now Shawn can't wait to see the Gohst Hunters episode where TAPS went to the Winchester. He is so into that show!!!

We aslo went to an Aviation Museum at a nearby general aviation airport. Gavin loves air planes! He had so much fun looking at all the planes and watching planes land and takeoff.  We even went into part of a 747 and sat in the cockpit! Daddy and his co-pilot were lovin' it!!!

I added more pics. Just click on the "Family Pics" link on the top left on the page, and go to "Stanford 2 " album.  Hope to see everyone soon! We love you and miss everyone!  

All I want for Christmas...

...is to be back in Cleveland with my family. Ali is doing well. She had a little set back over the weekend - we were scheduled to fly back to Cleveland on Tues 12/16, I hope Ali will be back on track soon so we can leave the beginning of next week. Ali had been slightly fluid overload and we were trying to catch up by increasing the frequency of her diuretics, but it didn't work and by Monday morning her breathing was very labored and her heart rate was out of this world. Within a couple of hours new tests had been done and Ali was much more comfortable. The docs were looking over all the latest numbers and were glad to see that the new valves were working well and that it looks to be fluid overload. So they ordered Ali to be on IV diuretics for a few days then try to switch back to oral meds after the extra fluid was removed. Soooooo... we are waiting to see how Ali responds to all this. 

On Sunday, Ali was able to take a short stroller ride around the unit! She was so excited to get out of her bed! Ali smiled and waved to all the nurses we passed.  It was a big production to get her into the stroller with all of her lines and such, but we did it! Hopefully we can go on another ride later this week when we are feeling better!

In other happenings... Santa stopped by the Ronald McDonald house with his elves (a local car enthusiasts group) to bring toys to all the kids. Gavin got a huge bag of MegaBlocks and Ali  got a holiday Barbie and a Barbie plane/cruise ship play set (we will be storing this in the attic when we get home, she is not quite ready for all the small pieces yet)! Gavin loves to empty the bag of blocks in our room and swim in them! Ali kept kissing the holiday barbie and brushing her hair! 

So we are packed and ready to go back to Cleveland...just waiting for my California girl!!!