A fever...seriously!

So we arrived at the Cleveland Clinic at 12noon today to check in for Ali's PE tubes. Went up to the PICU to get settled in, of course I packed like we could've stayed a week or so. Ali's nurse Mandy did an awesome job starting an IV, even though Ali was restless because she missed her nap. Still unhappy, Dr. Dad (aka Shawn) felt Ali's forehead and decided she had a temp. Now everyone knows that if you have a temp the day or night before a surgery, you are probably not going to have it. So we had the nurse take a rectal temp and sure enough Ali had a temp of 39 (102.2).  We talked it over with the PICU doctor, Dr. Dan and he called ENT and they said that they would have to cancel the surgery! Oh well, we'll just have to reschedule.

At least we had a nice 7 hour visit with the PICU nurses. They were all happy to see Ali doing so well and couldn't believe how much she has grown! I realized anyways that I don't think I am ready for Ali to be in the hospital again, even for a routine elective surgery. I want to keep my baby home! It was last year on June 14th that Ali was admitted to the Cleveland Clinic - the start of her 9 month hospital stay that included a 7 week trip to CA for heart surgery. So needless to say it was very weird to be at the Clinic today, in June, and actually to be in the same room we were in then too! I have goose bumps!

So back to the cold...Gavin is getting his 'I' teeth in and I thought I had allergies but apparently the three of us are sharing a cold (but Gavin is cutting two teeth!). After a dose of Tylenol at the hospital, a nap on the ride home and already asleep by 9pm, the princess is feeling better.  We'll see what tomorrow brings!

No news is good news...

...that's why it has taken me so long to post! Everything is GREAT here at the Kimble house! We are a busy family!  There are lots of new pictures on the 'Family Pics' link on the right side.

Since I haven't done a post in over a month, here is what we have been up to:

Easter was a busy day, egg hunt at Mammie & Dia's, early dinner at Aunt Heather's and then dinner at our house! Yes that's right - we had a house full of people! And thank's to my mom and Aunt for getting all the food ready and holding down the fort while we were gone!

Gavin and I went to story time at the library all April and most of May! He had so much fun with the other kids! The next session starts in a few weeks - can't wait to sign up again!

Ali and Gavin have also planted their annual pot of sunflowers with Mammie! They had so much fun! Gavin was even pushing the seeds into the soil, but when it came to the watering can he was watering himself not the seeds! The pots are outside Ali's window so we can watch them grow.

Ali has had a few doctor appointment and lots of blood draws over the past month or two. All the doctors are happy with Ali's progress! We were also able to take Ali off her thyroid med, a heart med, and finished her Ativan wean. WooHoo! 3 meds down and lots to go! Ali also had her first dentist appointment in May. She did a lot better than I had expected and the doctor said she did very well. Ali has all her teeth and no cavities! 

We have also been dealing with rash on Ali's face and forearms. We went to the dermatologist and he gave us 2 creams and a wash. It has been a week and her face looks great!

Ali has also been getting ready for preschool this past month. She had 2 assessments and Shawn and I just went to her IEP meeting.  We now have a plan for Ali and hope that the doctor's will let her attend school in the fall - otherwise a teacher will come to the house. I can't believe my little girl is going to school in the fall!

In the beginning of May we went to Preston's Hope playground on the east side with Mammie & Dia. This playground was made so that kids with and without disability could play side by side! Ali and Gavin had lots of fun! 

Gavin turned 18 months on My 20th. He is such a big boy and a big helper! Ali just lights up when she sees him - they have so much fun playing together! Gavin is a 'monkey see monkey do', something I didn't really worry about with Ali. I really have to watch what I say and do because he tries to imitate everything! 

Ali went out for a haircut last tursday at Roseann's shop! A cute summer bob! Ali is so girlie! Of course Rosa used the hair dryer, a round brush and styling products! That is not going to happen at home! Gavin is due to get his curl cut off, maybe sometime this month!

We have also had some visitors! Grandpa, Pam & John Maidens, Scott and Ashley Maidens, Cousin Charmaine from CA, Megan from the PICU, Cat from the PICU, and we are still waiting for Liz from the PICU (Liz if you are reading this start driving out here and visit Ali!) Still waiting to see everyone! Please call or email - Ali would love to see everyone!

So that's what been going on for the last month and a half. In June Ali is going to have surgery to put tubes in her ears. This actually was planned for last summer but she was not healthy to have the surgery then. Ali will have to be in the hospital for a few days because she is on Coumidan, a blood thiner, and the doctors want to monitor her after surgery. The surgery is scheduled for Monday June 8th.  I will keep you updated.

Also in June, Gavin is going to take swim lessons. Well it is actually just a parent/tot swin class to introduce the kids to the water. I hope he likes swimming!

I almost forgot...Ali has been working on lowering her vent settings and part of that has been putting in the Passy Muir valve (speaking valve). It takes her a while to warm up and know that she can make a noise, so she is not doing a lot of talking yet. But the other day I had my nephew over and he was running around and jumping and making Ali laugh so I put in the Passy Muir valve and was able to hear her laughing. I hope you enjoy hearing her sweet voice. (Don't forget to pause the music player on the right of the page.)

Back in the routine

Well Ali has been home for 2 weeks and things are finally starting to settle down and we are getting into a routine. It has been so busy and we even have 16 hours of nursing each day, my mom here to help with Gavin, and my in-laws and my aunt helping in the afternoon and evening with Ali! I am finally finding a place for all the medical supplies - I feel like I am calling the DME supplier every other day for more supplies! And everyone knows that I have to chart everything! I am constantly revising my charts and my info binder for Ali! Thanks Dad for teaching me how to use Excel and be organized with charts and such! 

Ali has been out twice since we have been home for blood work. She needs frequent blood tests because she is on Coumidan for her heart valve. Physical Therapy comes to the house twice a week and we are starting Occupational Therapy and Speech Therapy this week! Ali has one doctor appointment this week and two next week. By the end of next week we will have it down to a science getting her in and out of the Jeep with all of her equipment.

Shawn took Ali for a walk in the driveway over the weekend.  She really liked being outside, feeling the wind in her hair, and watching all the cars go by!

This past Saturday the city of North Ridgeville had their Easter Egg Hunt at the high school stadium. I took Gavin and my sister-in -law Heather and her two boys. The field was separated for age groups and when they blew the whistle all the eggs were gone in less than a minute! Gavin didn't quite understand what to do, but he had fun. All the eggs were filled with candy and some eggs had prize tickets. Gavin's cousins each won a prize. 

Yesterday I took Gavin to story time at the library. He had fun listening to stories, dancing and playing with bubbles.  I tried to look for some books or DVD's for Gavin and Ali after story time but all Gavin wanted to do was take all the books off the shelves! We will continue to go to story time every week - if we are allowed back to the library. LOL!!!

My Uncle Mark came over the past two Sundays with his mandolin. He played lots of music for Ali. She really had fun listening to the music and dancing! She enjoyed it so much that it put her right to sleep! Thanks Uncle Mark! Enjoy the video.

We are ready for visitors! Call or email me to let me know when you want to visit! Please wait to visit if you are sick or have been around someone that has been sick. We want Ali to stay healthy and at home. Can't wait to see everyone!

Check out the newest pictures. Click on the 'Family Pics' link on the right!