Surgery Success

Whitnee's Surgery went really well yesterday, it went better then they expected. She intubated and extubated with no problem :) Which is great for a child with SMA. She picked purple casts and she is constantly asking to take them off. (it will be a long 6 weeks). Her Dr. said she can start standing next week or as soon as she is feeling better, which surprised us but were really excited to here we could start standing rather then waiting 6 weeks.

I have kept her pretty drugged up with meds for the pain. But other then that she is doing great! We were able to come home yesterday around 8 p.m. which really excited us to not have to spend the night. That and you never sleep in the hospital, they are always touching, poking, etc... you the whole time you are there. I thought that sleep was one of the best things to help in recovering from sickness, surgery, etc... but I don't think hospitals believe that.

When Whitnee got home she slept till 8:00 this morning, and boy did she need it. She drove Wally (her wheelchair) around this afternoon for a bit which did perk her up some. Thanks for all of your support and e-mails we sure appreciate it. I will post pictures later.

Surgery Scheduled

Back in March I believe, I took Whitnee up to Shriner's for her 6 month visit. As we talked with the Dr. we were informed that Whitnee would need both her Achilles Tendons stretched. We have tried to prolong this procedure for as long as we can do to the recovery time and even the risk we take in intubating Whitnee again. We even contacted Dr. Swoboda hoping she would discourage it. But she was in support of doing it asap, so we can get Whitnee standing in her stander again for an hour. They told me that it would be this summer, we were thinking early summer.

I actually got the phone call today informing us that Friday Whitnee is scheduled for surgery. We will have a 3 day stay in the PICU and from what I am told she will be casted from just below the knee down to her toes for 6 weeks :( From then on I don't know what will happen.

So we ask that you remember her in your prayers that her surgery will go well with no complications (breathing etc....) and that her recovery will go well too.

Thanks for all your support. I will up date the blog on her progress soon.

Trying to catch up

We finally got to go to the cabin this year as a family! Whitnee's health was great so we thought we would try it. It was a success. We went up while Jesse was here in July (yes I am finally posting pictures) It was a nice visit, lots of fun!!!

Kortnee driving the 4 wheeler!

Whitnee driving the 4 wheeler (huge progress with her arms thank you PT)

Nic and Kaylen exploring.

Kaylen, Julia and Jayson on the 4 wheeler

(we could not get Jayson off of it)

My Family! I think the last time we had a family photo was about 6 years ago, before Dad passed away I wish we would of had time to do it professionally, oh well next time. I sure loved being with everyone. And being up in the mountains. (Mindi and Jill had to work we sure missed them too.) The Cousins what a cute bunch of kids!

Yet Another Hospital Stay!

Well, I was hoping my next post to be full of fun pictures from this summer that I have not had a chance to post yet. But sorry that is not the case.

Whitnee has had this allergy problem this summer (who hasn't) she can't cough like most of us and we have to use a cough assist machine to help her cough. Well the drainage she has had her pour body could not keep up with. So I continued to help her best I could but her oxygen levels dropped and I could not get them to come back up. So 911 is a number I feel I call way to much. It is pretty sad that when they walk in you know some of them by name, but the only way to transport Whitnee when she is sick is by ambulance so we love them a great deal. And they have been wonderful to drive her directly to Primary Children's rather then to the closest hospital.

So Wednesday we ended up at Primaries with the prognosis respiratory distress, collapsed lower left lung. We feel that is was a mucus plug. She did very well there, barking orders to the nurses and Dr.'s and of course using her manors too. Please and Thank you. (everyone thought that was cute). They never could figure out why she had a low grade fever. So they ran every test possible which traumatized pour Whitnee and really up set her parents. All tests came back normal. So on Saturday they felt that she was in a good spot to send her home they said where mom is so hands on they felt comfortable sending her home. (mom gets really over whelmed when comments like that happen and more stress added) They did not want her sticking around to long so she would not pick up anything there at the hospital-which we are very grateful for.

So I took Whitnee in today to see her Dr. Who looked at me and said as he looked in his ear. How were they treating her ear infection (I was upset about that after all the testing we did up at primaries) The one thing they never checked was her ears. So I am glad we had a follow up today it is nice to know what else we are fighting. He said to keep up the hard work and to check back if her fever does not go away.

We are now home and doing better, still having to do cpt and cough assist every 4 hours and everything else on top of that but it is nice to be home!!! Hopefully she will be able to get over this and we can enjoy what nice weather we have left. We are very hopeful this is not a sign of the seasons to come.

While we were at the hospital we met two other families with SMA type 1. We sure enjoyed talking and getting to know the Riggs family and want them to know they are in our prayers and hope that things continue to go well with their little one.

We have learned that when ever we are feeling sorry for ourselves it takes one hospital stay to realize we have it good, it could be a lot worse, and would not trade for the world!