Happier girl!

Wow, I can’t believe it’s almost been a month since Kaitlyn had her surgery! So much has been happening lately that time has really flown by. Kaitlyn continues to be recovering well. 

We took her back to have the surgeon take a look at her yesterday. We had noticed that you could hear a little bit of air coming out from her belly, where the tube meets the body and we were concerned. The surgeon said that it’s fairly common for that to happen. Upon exertion, like crying or using her belly muscles, some air and stomach contents can get pushed out around the tube. He did notice that there were a few hidden stitches that went unnoticed when they switched her from her original tube to the one she has now. He said that the stitches may have been causing some irritation as well so he removed those. 

You can see that the 3 small incisions and one in her belly button are healing up great! You will notice that Kaitlyn's belly is very big. The reason is because her liver and spleen are severely enlarged due to Niemann-Pick. Her belly will just keep getting larger over time as more sphyngomyelin is stored in her organs.

We have been closely monitoring how much she has been eating by mouth/bottle as it seems like she’s not as interested in bottles now. It takes a lot of time and encouragement just to get her to drink a fraction of what she used to eat. We don’t know if that’s because she gets tube fed at night and her appetite is less during the day, whether she has some discomfort from the tube, or whether she is losing some of her ability to suck on the bottle. We have a notebook where we keep track of everything she eats so she doesn’t end up losing weight. 

We have also been really busy with our fundraiser  to raise funds to help with Kaitlyn’s medical bills, and getting her the equipment she needs for daily living, like a medical stroller and supportive seating. We are really excited about the fundraiser. Many people donated items and services for the silent auction and it’s really become bigger than we ever imagined. Here is the link to the fundraiser.  http://niemannpicksilentauction.blogspot.com If you can’t make it to the event, you can still place bids online for the auction! We will be updating the site with bids the night of the auction too up until 9:30pm ET.  

We have been able to borrow a Tumble Form Seat for Kaitlyn through her Physical Therapist until we get our own. It is amazing to see how much move she moves her arms and legs when her body is supported. It is much better than just laying on the floor.

It doesn’t come with a tray so Chip custom built her a tray! I do have to say that his building skills are amazing! It is awesome and allows for her to play with her toys in an upright, supported position. Just this small change has allowed for a better quality of life for her, which is what we are focused on right now. 

We know that we can’t change the outcome of her disease, but we can change how she lives the life she has and we want her to be comfortable and happy for as long as possible.