Friday, April 18, 2008

MOVING ON!

Well, I have been feeling better about things over the past few days and Mike is coming home today from his business trip so that is great. So thank you for your prayers, but please keep them coming. Kaidence has been doing great. She is trying to move around more and I think that she is getting frustrated with not being able to get around as she would like. We are working on that and therapy is coming today. She has started getting "stranger danger" and does not like people to wear hats around her at all. This all started in the PICU from all of her surgeries and the scrub downs they would do of Kaidence's VAD cannula sites. Sometimes she was still awake for it and they always wore the blue surgical hats for it. Kaidence does not want anyone to feed her. She thinks she will do it herself. Therefore, I don't think she eats much at all, but Kirby our doggy sure eats well thanks to Kaidence. She is still tube feed a lot but that is slowly getting better. Yesterday was cardiology and to tell you the truth I did NOT want to go. Sometimes you just don't want to be reminded of everything when you are trying to move on and be normal. Anyhow, I did get a little down after her appointment, but feel better today. Her echo looked the same, not better and not any worse. Her ANC is at the moment in "normal" range and so they are slowly starting her back on one of her immunosuppresives. We will watch closely to see if it causes her ANC to fall again. The doctors are meeting today to try to figure out what happened with the biopsy and how. So many people live with this regurgitation problem but Kaidence's happens to be worse and has a high possibility of continue getting worse as the years go on and more heart cath's take place. Intervention will all depend on Kaidence's body response to what is happening. She may handle it just fine or she may have issues that lead to surgery or needing a new heart sooner than we wanted. I can't make things go away or get better and I know that things could always be worse. We will just pray that Kaidence's is happy and as healthy as the Lord wants her to be. I don't have time to waste on worries that I can't fix. I need to enjoy and embrace every moment that I do have with my children. My life will be happy because I am choosing to make it happy.

9 comments:

Seth, Caralee and Sydney Jo said...

Hi my name is Caralee Baker, I found your blog off of the IMHH database, anyway I am a heart mom to, and I was reading about your sweet little Kaidence and just had to leave you a message. My daughter has two regurgitating valves, they don't seem to impact her life much now, but there is a chance that something could happen in the future that may impact her future surgeries. I kind of know a little about what you are going through, I am sure that my baby's heart is so much different than Kaidence's heart, but I will be praying for her and her heart!
Caralee
Sydneybaker.blogspot.com

Spencer and Becky Wertz said...

It is nice to see an update we were worried. Keep up being positive and let us know if you need anything

Marie said...

Amen Shantelle! It was nice to see you yesterday, but I didn't have time to chat. Sorry. But I'm sure that it was so nice for you to be in and out in a jiff...good change there.

Keep on trucking girl! Things will turn out.

Allysa said...

I was on the Gracie blog and saw that you were also there. I just wanted to let you know that even though you don't know me, you are in my thoughts and prayers as well as the rest of the ppl there. You and many others have been such an amazing influence on many many ppl!
Much Love and Many Prayers~
Allysa Barkdoll

Gourley Family said...

Shauntelle,
Thank-you so much for posting, Mike and I have been worried. They say no news is good news, but after you see a special little girl for 7 weeks straight, you can not help but become attached and worry about her. She means a lot to us and countless others. Please know we will pray for Kaidence. Thank-you again for keeping us informed on this special little girl!It is hard to not get frustrated at what you can not control, but you guys have a great attitude about just living every moment to it's fullest.
All our prayers and hugs,
Emily and Mike Gourley

Brenda said...

Shauntelle - You need to get away, even if for just a few hours. Leave Kaidence with Mike, bring your boys to my house to play with my monkeys and you and I will go to dinner and window shop...the best therapy there is! AFterward we will indulge in a huge hot fudge sundae. Doesn't that sound like fun???? CAll me when you get a second and we can make the plans!!

Spencer and Becky Wertz said...

I agree with Brenda. I would love to join the girls night out if you guys go!

Mike & Rebecca said...

We're thinking of you guys, you have been through so much...keep moving forward...do what you can today and let heavenly father take care of the rest. Kaidence is truly teaching all of us life lessons through her trials hear on earth.

Thoughts and prayers,
Mike & family

Debbie said...

I am glad that Kaidence is making progress. What a nightmare you have been through. It sounds that she is getting a lot more independent. Thank Heavens spring is hear and you can get outside more often. I think about you and we continue to pray for you and your family. I agree that you need a girls night out. It's the best therapy. Love to you all, aunt Deb