Ali is home!

It has been 283 days since Ali had been home! We are so excited this day is finaly here! We said our goodbye's to all the great nurses, and therapists at rehab, passed out heartshaped cookies, and pictures of Ali to everyone! Ali traveled over 5000 miles to CA and back to get a life saving heart surgery this winter. We drove countless miles back and forth to the Cleveland Clinic and to CA and back. And Gavin has been such a trooper this whole hospital stay. We couldn't be more blessed to have our Ali Rose home again! 

We left rehab around 12noon (and everyone at reahab said no one gets out that early!) and Ali took a nap in the car on the ride home. Mammie, Dia, and Grandma were waiting for us to arrive. Grandma drove up to stay with us until we get settled. (Thank you Grandpa - wish you could be here with us too!) After we arrived home it felt like we did when we brought Ali home from the hospital when she was born! We had to get her settled, get her feed started, switch her onto her other vent, and get her meds ready! And ofcourse lots of kisses in between! Ali is so happy to be home and Gavin is happy too - he even started to bring her toys to her and she gave him a hug! Too cute!

Thank you for all the thoughts and prayers. They really helped to bring Ali home! We are so fortunate to have amazing family and friends that have supported us in every way! While the chapter is closed on the 9 month hospital stay, we start another chapter of continuing to help Ali get stronger and to hopefuly get her off the vent! 

In a week or so, once we get settled, we would love for our family and friends to come and visit Ali!  I'll let you know when we are ready for visitors! Can't wait to see eveyone! This includes all the PICU nurses too - we miss you!

Check out the new pics on the 'Family Pic' link on the right!

The Power Chair

Last weekend Ali's PT tried a power chair with head controls for Ali. She did really well! Andrina, PT, let us keep the power chair in Ali's room over the weekend so we could work with Ali and let her explore. It was amazing to see where Ali wanted to go and to watch her explore and make her own decisions on where to go! It has been 9 months since she was able to go where she wanted to. Ali even follower Gavin into the small Kitchen area in her unit at rehab! Check out the videos and remember to click on the 'Family Pic' link to the right to see more pics! And remember to pause the music to see/hear the videos!

This one is just for fun! She is just too cute!

Thank you for all the thoughts and prayers!

Spring Fever

There is a courtyard at Rehab and we took advantage of the nice weather and outside on Saturday.  Gavin had so much fun on the playground and slide. We even cleaned off a cozy coupe and he cruised around (actually he really just wanted to push it around the courtyard)! Later, Shawn took Ali for a walk thru the building and went outside for some fresh air - she loved it! 

Our Dining Room is finally starting to look like Ali's new bedroom - Shawn and his dad moved out the dining room set and Shawn brought down crib and dresser. We still need to add all the decorations and pictures from her bedroom walls to warm up her new room! We can't wait until she comes home!

Shawn and I wanted to hear Ali's voice today so we changed her vent settings and put in her speaking valve (without Respiratory or Nursing...he he)!  I put Gavin in the crib with Ali and they were having so much fun! Ali was saying "Hi" to us and babbling to Gavin, it was so cute! We only kept her at that setting with the valve for a half hour, we wanted to see if she would tolerate it and she did awesome! I promise I will take video next time! It is so wonderful to hear her 

Save the date for the Up Side of Downs Northeast Ohio Buddy Walk. It will take place on Saturday August 29, 2009 at Progressive Field. I am going to organize a team this year so watch for details...Ali wants all her family and friends walking next to her this year!

Check out the new pics in the 'Family Pics' link on the right!

Enjoy the videos! (Remember to pause the music player on the right!)

Yummy peaches!

Yeah for Ali - she is taking small amounts of food by mouth! I can't even remember the last time that Ali wanted to eat any food by mouth! We are soooooo excited! Other than eating some food it has been a therapy packed week (thanks girls!) Ali is getting stronger by the week - everyone is so impressed by her achievements! We also received the official word that the staff at rehab feels Ali will be ready to go home in 3-4 weeks! Hip Hip Hooray! Of course this all depends on Ali's Medicaid waiver getting approval so Shawn and I can arrange nursing for Ali's home care. But we are on it!

On another note - Gavin has 2 molars coming in! Poor Gavin - it has not been the best week for him! Ouch!

We are eagerly awaiting the day we can bring Ali home!