Brisan and Parker Stults | Living with Niemann-Pick Type C

Man time really flies. It is so hard to believe that in this past few weeks we have celebrated Parker’s 7th Birthday and Monday is Duncan’s 5th Birthday. It seems just like yesterday we were bringing Parker home from the NICU and Duncan from the hospital. As you all know I go BIG for Birthdays around here. We had a “Jenn style” party for both Duncan and Parker last weekend. The theme was “the Lorax”. I have to say that I think this was one of my favorite parties yet. We had a great time with our friends and family even if there was like 60 people here!

The Lorax Party for Parker & Duncan – 2013

Cough Assist Machine

On a heavier note we have some new doctors appointment and new equipment for Brisan and Parker. A few weeks ago we took Brisan and Parker to their pulmonologist for a check up. She was amazing and we feel her, Mike and I are all on the same page in regards to the boys and their care. She is very much being proactive and watching both of them closely! That being said their pulmonologist has put Brisan on what is called Cough Assist. This is a machine that forces a positive amount of oxygen in his lungs then 2 seconds later “sucks” with a negative amount of oxygen. We have to do this for about 25 breaths (with breaks). This is to help get some of the increased mucus out of his lungs before it causes another pneumonia. I have to admit that this was really hard to watch for the first time. But now that he is starting to get used to it he is not fighting us as much. It just takes some time to get used to this machine stealing your breath away!!

So at this same pulmonary appointment we decided to do another sleep study on both Brisan and Parker to see how bad their sleep apnea is. We know that both boys are having some but we are not sure the severity on either boy. So we are pretty sure that they will then go on either a Bipap or a CPAP. I am not telling you all this to freak you out. Many people have sleep disorders and live healthy lives. While we know that Brisan and Parker are not healthy their sleep disorders very well may be causing more problems that we CAN control. So really this is a good thing. The boys will have their mask fittings in the next few weeks and then go in for their sleep studies.

Michael, Jennifer, Duncan, Brisan, Parker 1-19-2013

On a much lighter and exciting note, Mike and I are super close to a dream coming true. All of our home study is completed and has been reviewed. We had a few setbacks that we have now worked out and should have our licensing number soon. Now we are just waiting for the call that Children’s Division has a placement for us. I know that I am over the moon at the idea of finally getting to love on a little girl. I know that God has the perfect little girl for our family and I just can’t wait to meet her!