Monday, January 12, 2009

A POST........SHOCKED ARE YOU?

Are you all shocked that I am posting? So I must say that I am very behind on my posting, but it does seems to be the trend (hint, hint to everyone else). Here is a very brief summary of everything. I am so far behind that this just seems too overwhelming. So no pictures for now and here it goes....... Kaidence was discharged from the hospital on December 23rd. I hope that she doesn't make this a traditional way to celebrate her "Angel Heart anniversary" but we will wait and see what she decides to do next year.

Christmas was so much fun this year. The kids set out cookies and English toffee ( a whole plate full) along with some carrots. The problem was that they placed them down by the fireplace. So after they settled to bed, I looked over and was shocked to see that Santa must have already come because that plate (minus the carrots) was completely empty. Well, our little dog had taken care of the Santa treats for us. Needless to say that she spent the night in the laundry room, just in case she got sick. We celebrated Christmas with our family and had a very relaxing Christmas day. The kids were all so excited to see what Santa had brought for them this year. What a blessing it was to have all of my family together at home for Christmas. Then, a couple of days after Christmas I got the wonderful stomach flu, most likely courtesy of Kaidence.

For New Years we went and stayed at a hotel by our house with my parents and ordered pizza and let the boys swim( Kaidence still can't swim in public pools) as long as they wanted. My dad spent most of his time making bugs with the boys (they got a"creepy crawler" maker for Christmas......huge hit). I figured that I brought in last New Year's in the hospital so this year we decided to bring it in relaxing.

"C" has had strep throat but has been on antibiotics for a couple of days and I think that I may have it so I am going to get tested tonight. I started "M" on antibiotics, just in case. Mike has been working his fanny off between work and school. Hopefully he will be done this year, but has recently informed me that he wants to go on to get his Masters.

Kaidence is doing very well. She has started walking everywhere and is much more confident. She can move pretty quickly. She is looking more and more like a little girl and not my baby. She is talking and signing more and more everyday. We have some follow up appointments coming up with genetics and the sleep doctor and hopefully we can be done with genetics FOREVER!!! We have an appointment next Monday to check her kidneys for some things. She has been getting a lot of UTI's. I am very excited to announce that we are going to cardiology every 6 weeks. Can you believe that??? 6 whole weeks without having to go to the hospital (I hope). We do still have to get her Prograf levels drawn because they have been all over the place lately but I have started having them drawn at a lab by my house and it saves a lot of time.

Saturday, January 10th marked one year to the day that Kaidence came home from the hospital after 3 months straight in the PICU and getting her heart transplant. It has gone by both slowly and quickly if that is possible. We spent that day at the movies with Hope Kids and then at the doctors with "C" for his strep test. My mom went with me to the movies because Mike had work and homework to do.

Feb. 5th 2009 -
Early intervention came to the house today for Kaidence's yearly evaluation. I am so excited to let you all know that she is caught up in all areas of development, except eating of course. However, we have seen progress in that area as well. I took her to an eating specialist that is supposed to be great at getting kids eating and off the g-tube (feeding tube). I call her the "G-tube Whisperer". She suggested that I start giving Kaidence pureed food through her g-tube. She said that there is no official study on this but that they have seen for whatever reason it helps to stimulate the kids desire to eat by mouth. I have to say that after doing it for a few days it does seems to be helping. Two days ago she took 4 oz of baby food in a sitting. I know that some are reading this thinking that I am crazy for being so proud ,but all you heart mommy's that know what I am talking about will agree. Kaidence still struggles a great deal with being able to swallow her food. Therefore her Pediasure is still her source of nutrition. We have days that she takes a sippy cup ok but we still have to tube feed at night and then we will go a week with having to tube feed everything. Oh well, baby steps I suppose. We are still further than we were a year ago.

Since Mike has been working so much lately he surprised the family this last weekend and took us all up to the Homestead to get away and spend time together. We had such a great time with the kids. The boys had a great time swimming and playing games with their mommy and daddy. I also must mention that Kaidence was able to swim with us as well. It was the first time that she has been swimming since our family vacation in 2007 when she got sick at 5 months old.

Other than that all is well at home. The boys are doing well in school and keep me busy with life. I love it though and find that I often keep telling myself "Come what may and love it".

10 comments:

Julianne said...

I brought my little baby to cardiology yesterday hoping to see you, but alas. You guys are doing SO well that the appt I scheduled for you back in December just wasn't needed! I was sorry to have missed you, but am thrilled you and Kaidence and the whole family are doing so well. Perhaps I'll catch you next time!

Christina said...

Glad to see a post and that things are going well.

Hugs & Prayers,
Christina
Jacob's Momma

Becca said...

I am so glad that you are all doing so well! Every six weeks is amazing! And walking and eating? Wow is Kaidence making progress! Hopefully we'll see you at a HopeKids activity!

Rebecca

carolyn q said...

Hurray. .I had been wondering what was going on. I am glad that you were able to get away and spend time at the Homestead. I am sure it was very needed.
I will give you a call this weekend and chat.
(((HUGS)))

Abby said...

Thanks for the update! I am so glad to hear that Kaidence is doing well and that she was able to swim with her family and that she is eating well. You continue to be in my thoughts!

paula said...

Shauny I'm so glad that things are going good for Kaidence. Your family will stay in our prayers. Love ya!

Paul Cardall said...

We are so happy for your beautiful little miracle Kaidence. Our prayers are with her and everyone involved. As difficult as these things are, I know from experience that they are special gift from God which make us that much more compassionate and loving towards his children. Thank you for sharing your lives with us through the blog.

Gourley said...

I'm so glad to hear that Kaidence is doing so well!!!!!!! Carter actually had something that sounds similar. We checked into the hospital January 1st at 12:10am haha! I love hearing the accomplishments that Kaidence is making. I'm so excited for her and you! It give my encouragement with Carter's "baby steps". One day when they're older, we'll have to get these little heart babies together and they can tell their war stories :)

Andersonfamily said...

You don't know me but I found your blog through a friends. My daughter currently has a GTube and we are working with her to try and get her to eat. You mentioned in your post about a "GTube Whisperer" lol. Just wondering if you could tell me her name! I would love to get her working with my little girl!!
Kristi

Spencer and Becky Wertz said...

I am glad things are going better for you. Sounds like you got some much needed R&R. And even though our stay at Primary's with Whitney last week was MUCH shorter then yours with Kaidence, I have a better understanding of the feelings you express about the place, if that makes any sense. Our prayers are always with you :O)