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.

Sunday, September 14, 2014

Annual BMT, Broken Bone, and the ER


September 4th Natalie had her annual Bone Marrow Clinic visit and hearing test.  Her hearing test showed a slightly different result than what we expected.  Slightly worse.  We will have her fitted for a hearing aid in one ear and see if this helps her sufficiently.

Natalie's overall counts look great.  She is doing very well, and remains at 100% donor cells.  Her titers to the immunizations have responded as hoped.   Her IG levels are good.  One IG level which ins't most important was low, but nothing to fuss over.  We will keep an eye on this level and have it checked again next year.  However, in a few months she will need a CBC checked for follow up purposes, in which surprisingly I can't even remember why.  Lately I have had a struggle remembering everything, detail by detail.  It's a good thing the girls' health is looking up, I'm slacking off with the details...I suppose having a newborn contributes to this matter.

September 6th Alice broke another bone.  Ahh!  Some months ago we teased that Alice has only one limb left in which she has not broken, her right arm.  Well it just so happens that her right arm is the one in which she broke.  The kids were playing in the family room having a great time, laughing and running around.  Matthew threw a stuffed animal at Alice while she was running...she tripped over it and landed with her hands on the floor (carpeted floor), upon impact her right arm buckled just above her wrist.  We put an ice pack on her arm and gave her some Tylenol.  She didn't seem to complain much.  The next day it was swollen, she still didn't seem too bothered by the pain.  We decided to have an x-ray regardless, because of her history, and sure enough it was broke.  She takes vitamin D and calcium regularly...it's just a slow process to recovery from a double transplant.

X-ray of Alice's right arm...just above her wrist you can see the buckle fracture, indention.
Also you can see the growth rings of missed growth :(
Hanging out in the American Fork E.R. with Dad.

She was treated right at the E.R.

September 7th on Sunday at our church Tyler blessed Isaiah.  It was a sweet blessing and a great day to celebrate him and to be with family.  We love Isaiah and can't get enough of him.  I still can't believe he is here and a part of our family.  I often find myself staring at him in wonder that I have him.  At his recent doctor appointment he weighed 8 lbs. 6 oz.  A pound and a half bigger than at birth.  Happy he is growing!

Tyler's sister Jessica took his newborn pictures...love them, this was my favorite.

Isaiah's baby blessing...just outside the church.
What a handsome boy in his blessing outfit.

I think this counts for a smile.
After Isaiah's blessing I saw the sun coming in the window and I told Matthew to grab the camera...he was a great photographer, I always wanted a picture of me smiling at my baby...I know, so cheesy!
Isaiah and his cousin Parks, we are missing him!  Only one week apart.  Parks had to go home, to Hawaii.

September 8th Natalie woke at 2:30 a.m. with a raging fever of 104 degrees and couldn't breath well with out pain.  She was acting funny and gave us great concern.  It is always scary when she has a temperature so high...her seizure threshold is lowered when ill.  Tyler and I decided it wasn't worth waiting until morning to have her seen.  Her lungs are so fragile, as well as her neurological status, it's best to be overly cautious.  I took her to the American Fork E.R.  The x-ray indicated possible beginnings of pneumonia, but nothing certain.  We had the regular labs drawn and a nasal swab done to check for the new virus that has been on the news (Enterovirus D68).  The nurse placed an IV to get cultures and to administer a dose of rocephin.  Natalie did quite well and was very brave.  We went home after 4 hours and she slept until noon.  We also started her on Azithromycin; since she has not had fevers, and her cough and nose have cleared up (mostly).  I think we caught a pneumonia in it's track.

Waiting in the E.R. for x-ray and lab results...her fever just broke.

Brave Natalie once again.
September 12th Alice visited the orthopedic doctor today and received a hard cast.  Tyler asked if they had contacted the social worker yet...they laughed at the irony.  This better be the last broken bone for Alice.  I am tempted to wrap her in bubble wrap until her bones are stronger.





More funny things the kids say:

Evie said to Tyler, "Dad, what are those dots on your arm?"  Tyler said, "Evie they are Freckles." Evie said, "Why do you have so many freckles?"  Tyler said, "You will have some freckles too...soon!" Evie then examined her arms.

Natalie came to me the other day seemingly discouraged about something.  I asked her what was wrong and she said, "I don't think Heavenly Father is answering my prayers." I wasn't sure what to say but questioned her as to why she felt this way.  She replied, "Well I pray every night that you will have a good night and be able to sleep, but it hasn't worked."  I was surprised by her response and touched at the same time.  I thanked her for thinking of me and told her that some nights are truly better than others.  I then realized that I must be complaining to my children about not getting enough sleep, or it's obvious when I'm dead to the world at 8:00 a.m.  Either way Natalie has been sweet to think of me.

We were all gathered around the table doing homework, when Blair announced that he was having a hard time focusing.  He suggested that he put his pet snake in the center of the table so we could all focus better.  So, we did homework with the snake.  It seemed to help Blair, but I can't say I was too excited about it.  Blair has been so persistent in having a pet.  My brother Josh caught the 3 foot long snake for Blair.  It was originally going to be a tarantula, but they were released so Josh delivered a snake instead.  Either way I wasn't so sure about it.  If I ever find the cage empty...I will move to a hotel until the snake is recovered...no joke.

I will post again soon, I have a fun video to share...it's from two years ago--fun to look back at where we have been and where we are now.

Lisy

Matthew read bedtime stories for me, Thanks Matthew!








4 comments:

  1. How you even still know the difference between day time and night time is incredible to me!!! Love all the pictures but that final picture of the kids is perfect and priceless. You have amazing kids, in great part to your and Tyler's examples of resilience and unconditional love!!!

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  2. Hi Lisy- This is Rachelle Albrecht. I am wanting to discuss something with you! Could you email me at rachellealbrecht@hotmail.com so I have your contact information please? Thank you in advance!!

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  4. very touching and emotinal this was <3 needed tissues too. i love the pictures you put along , melts my heart to see this little angel. lots of love and prayers from me....

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