The Natalie & Alice Fish Story

We are the Fishes. In 2011 two of our five children; Natalie and Alice were diagnosed with a rare gene disfunction called Leaky SCID (Severe Combined Immune Deficiency). Their condition is so rare that only two cases are reported in the U.S. each year. Both girls have endured much, and have spent most of their young lives in and out of hospitals due to common illnesess a healthy immune system would overcome. The required treatment for our girls is a bone marrow transplant.
Although the new marrow could mean a normal life for them, it will be a long and arduous road. This blog is to share our experience as parents and the courage of our children.

Wednesday, September 12, 2012

Catch Up

There isn't enough time in the day. Lately by the time the kids are settled for the night Tyler and I are spent and therefore everything we intended to accomplish is bumped from today's list to tomorrow's list.

In my mind there is much to record/blog...things I wish not to forget, however, by the time I find a moment to write them down I've already forgotten what I wished to remember. I'd like to say "oh well' it must not have been important. But I can't fool myself, I forget even the most important of things.

For today the kids had a great meal around the dinner table...they are happy, we are all together--everything else somehow manages.

Evie has been sick the past couple days, requiring more of my undivided time. As challenging as it is to have a little one sick, It requires me to spend extra time with her. Sometimes it's okay to have an unfavorable reason adjust our routine.  She has been on my hip or lap more, I've rocked her more...maybe this is all she really needed.  Little Evie can be so independent, I was happy to be there for her when she needed extra comfort. She is well now and back to her mischief.

Update on Natalie and Alice this past week.

Monday was BMT clinic--Alice's counts were great...thanks to the Nulasta she received last week.

It was a long day as Alice received an infusion of IVIG. This made her vomit during the infusion, but seemed to be fine the rest of the time. So far, no headaches from this batch of IVIG.

Most of Natalie's counts were good. Her platelets are low. Many things can cause platelets to drop, therefore, there is no real concern unless the trend continues.

Natalie and Alice have been dealing with irregular bowels. We are adding some more acidophilus into their diet to create a better balance. So far, so good.

Tuesday Natalie met with the pulmonologist regarding her need for oxygen at night. We are going to treat her asthma more aggressively with an inhaled steroid twice a day. This should help her lungs with possible inflammation. In 6-8 weeks from now she will have another pulmonary function test done to see if the steroid has brought improvements.

Natalie's lungs have endured much over the years, she has had several severe lung infections and several basic pneumonias. Also the chemo drugs used in bone marrow transplant can be difficult on the lungs, we hope and pray that her lungs will grow healthier as she grows older.

Recent studies show that the lungs still develop and grow new air sacs into adulthood, unlike previous studies indicating that it no longer produces new air sacs past childhood. If this is true Natalie's lungs will have a healthier chance. Hopeful!


p.s. We have another missing tooth in the family.   Matthew has spent the last hour in his bed wiggling his tooth.  Good luck tooth fairy...this is your chance to redeem yourself.

Alice was playing cowboy with Evie.  She found some great cowboy least she thought.  Anyone who has spent time in the hospital knows exactly what kind of cowboy hats these really are.  I was so glad I had sterilized them since their last use.  These hats are one way to monitor a child's out put...not the most enjoyable. 

Sweet Grace takes good care of Natalie.  She made her a darling quilt and brought her some gluten free cookies.  Two peas in a pod they are.

When leaving clinic on Tuesday Natalie asked to sit down on the chairs outside to observe the birds.  She had me take some pictures.  Children are so great at recognizing the beautiful creations that surround them.

Now this little bird is the silly bird that Natalie caught weeks ago...which I posted about.  She was so excited to see it again.  She wanted a picture of it.  Moments before it made it's appearance she was trying to describe to me what the bird looked like that she caught weeks earlier.

Enjoying herself.

A sweet day for Tyler and Natalie.  Sometime ago I reserved a couple tickets to the Brigham City Temple open house.  I didn't expect to go, knowing that our plans change all the time, but hoped that by reserving them somehow Natalie would be able to go.  I then forgot about the whole thing and the morning of our tour Natalie asked if she could see the inside of the temple.  I remembered the tickets and asked Tyler if he wanted to take her.  The two of them had a great time.  Natalie was sincerely thankful for the opportunity she had to be in the temple.  It couldn't have been better timing.  She had a difficult morning and needed something to cheer her up.

Silly Alice doing what she does best....making everyone laugh.
Once you put a three year old on the swing good luck getting them off.  Why is it--that they never tire of swinging?

Trying a new hair style.  Looks cute Alice.

Tyler was so excited to make me the most tasty tomato ever.  He melted mozzarella cheese with olive oil and pored it over a fresh garden tomato, then sprinkled some Parmesan cheese and fresh garden basil over the top.   It was awesome.

1 comment:

  1. So good to see things are going pretty well for you guys! You have our love and prayers always!!