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, May 31, 2015

Past Two Months

I have started several posts with great intentions to publish them...I seem to be interrupted plenty and think, I'll get to it later.  Many of the pictures and videos on this post are old but have been just waiting on the blogger server to be published.  Even if they might be from months ago I will still post them...after all I got as far as uploading them.  I think I need to make a goal to post something, anything once a week, so I can keep my records straight and so the task of posting won't be so overwhelming as I try to recall the last months events.

Just for the record, I really do love posting.  It's so good for me to take the time to's very therapeutic.  Journal writing serves many wonder we are encouraged to do it.

Okay, Our life is feeling more stable all the time.  We still see the doctors plenty and have illnesses, most in which we can manage without medical attention.  This spring has been tricky.  The weather can't decide what it wants to be, hot, cold, rainy, and it has confused everyone's immune systems. Everyone has been passing and sharing the next bug that is going around.

So to begin.  Life has been good to us, as we have been settling into to our new neighborhood.  The kids have wonderful friends.  Tyler is working hard at his new job--he is so dedicated to his work. He always has been.  It's bizarre to think another school year is ending....summer break is here.  Of course I have great expectations to do lots of catch up work, reading, and projects with the kids this summer. I have it all figured out in my mind...the hard part is implementing and following through with this plan.  Sound familiar?

The children are however, very excited to attend Camp Hobe' again this year.  Camp Hobe' is a cancer camp for patients and their siblings.  Last year the older three had such a wonderful time they can't wait to go again.  Alice will be able to attend this year finally, as her health is better.  She will go for just the day camp.

And I can't believe I will be registering Alice for Kindergarten!  I honestly can say that there were many moments when I wondered if she would be able to go to school, as well as many other things. We have been so blessed.

I've made a list of the past two month's events--this is the easiest way I could think of to catch up.

--Lost Hearing Aid.  Natalie has been congested again and experiencing fevers...I'm almost convinced that gluten can cause fevers with Natalie, she broke one night and ate croutons.  I made a really good gluten free meal for an evening with company, I had offered a separate bowl of homemade croutons for the salad.  Natalie helped her self with them...PLENTY TOO!  The week following she was ill.  I suppose it could have been coincidence with something else, however, I wonder if I am seeing a pattern here, as I look back over the years.  Sinus infections or Gluten? Likely sinus or something but unfortunate timing with gluten. Hmmm, I wish I knew the cause of her reoccurring fevers.  Anyway the fevers cause her seizure threshold to lower.  A few days post eating the gluten, I was driving home with Natalie in the car, knowing she had a fever I began to get concerned...and she began to seize, I felt like I couldn't drive fast enough to get home to her rescue which I normally have with me.  In the meantime she lost her hearing aid.  Has no memory of taking it out or what happened.  I have searched the car over many times, why is it that cars can hide things so well? Ha ha, including rotten milk bottles. She lost it already once on the plane to DisnelyWorld.  I literally took apart the airplane seat and found it, but no such luck this time.  Thankfully the insurance allowed us to get one replacement. Hopefully the new one will stick around.  I still check the car in hopes that the old hearing aid will show up.

Since Natalie received her hearing aid several months ago, we still have not been able to do a proper hearing test to ensure its correct settings, etc.  We have tired plenty of times, however, she has frequent fluid in her ear which isn't feasible for hearing aids.  We'll get it though.

--April 7th, ER for Alice.  The past couple weeks have been long.  Evie hasn't been well, poor thing. It isn't like her to be still and tired.  Possibly a rotavirus.  This bug is yucky, causing diarrhea, vomiting and stomach pain.  Shortly after Evie recovered, Alice came down with the same thing. However, Alice's reserve is still limited.  She became quickly and severely dehydrated.  We took her to the local Emergency Room where they treated her with plenty (double bag) of IV fluid.  She began to perk up. Labs were drawn and then we headed home shortly after midnight. I recall the doctor telling me that he hasn't seen a child so dehydrated.  She hadn't been sick long.  It goes to show that she is still fragile.  A symptom of dehydration is severe vomiting.  She was vomiting on the dot every 5 minutes. we would give her drinks and 5 minutes later it was back up.  That was a hard virus for Alice at this time.

--Blair's Birthday, April 13th.  He turned Eight!  It's great to be eight.  His birthday wish was to go to the Museum of Natural Curiosity at Thanksgiving Point.  He went once with his school class and hasn't stopped talking about it.  We decided to surprise him, so we blind folded him.  When we arrived Matthew was guiding him, the task was more than Matthew realized as he unintentionally ran Blair into the handicap sign...I still have some small doubts that maybe it wasn't unintentional.  After a few tears Blair was ready for the surprise.  We had a wonderful time and the perfect time to go, as nobody was there...rare for this museum.  Blair broke the record as the longest hanging Sloth.  He hung on the rope for approx. 10 minutes.
Had to get a picture of the handicap sign, just for memory sake.

--CT SCAN for Natalie.  The new CT scan at PCH is awesome.  It's 80% less radiation than the old machine.  Natalie was schedule to have a CT scan done in Riverton, however, I was more than willing to make the drive to the main Primary Children's, Salt Lake to avoid the extra exposure of radiation.  They decorated the new machine to look like a pirate ship.  It helps the kids to feel less anxious for the scan.  The scan was to analyze her sinuses as she has had constant sinus congestion, minus the weeks she is on a heavy course of antibiotic.  We are tired of antibiotics, her system is stronger now and it's time to merge off as much medicine as we can.  In a couple weeks we will meet with ENT again and discuss Natalie's sinuses.  In the meantime I have learned from my dentist brother-in-law that he has had a lot of success with XLear nasal spray.  He has been recommending it to several of his patients.  It seems to help with sinus congestion.  I thought I would give it a whirl.  I started it on Natalie as she was feeling sick and congested, I was very surprised as it seemed to clear her sinuses...and I didn't need to start her on another antibiotic.  Hopefully this trend will continue.  It may not ward away everything but if it helps, hooray!

Isaiah crawls April 22nd.  I love this boy! I can't imagine my life without him.  He looks at me like he knows what I am thinking and has this way of communicating that is hard to describe.  Many times as Tyler and I were gathered around with our children (before Isaiah) it always felt like someone was that he is here that feeling of missing someone has been replaced with completeness and gratitude, and peace.

Alice BMT Clinic April 27th. Good day in clinic, Alice's red cells are normal 13.9, platelets normal 226, and ANC is great 4300.  Her liver tests are still a tad elevated.  I requested a consult with GI and additional liver tests to be done, including an ultrasound...just to make sure we are good.  Also it is good to have a baseline for this point in time.  No additional blood was drawn they were able to use the blood that was drawn earlier in the day for the liver test.  Her stool sample showed elevated fecal fat, but nothing alarming.  The GI doctor was not concerned.  The ultrasound looked normal as well...Phew, good for mamma to know.

--Blair's Baptism May 2nd.  Can I just say this is one of my favorite moments as a mother.  There's something about a child being baptized, or anyone for that matter.  The feeling is so sweet and the reality of the event is so amazing.  We are so proud of you Blair.  You are a wonderful boy and we know your future is bright and you will do great things.  We were lucky to have so many family and friends there to celebrate this moment in your life.

Blair loves to be with his cousins.

Grandpa and Grandma Schellenberg

Grandpa and Grandmother Fish

Mother's Day, May 10th.  I think this year was my favorite Mother's Day of all.  Natalie made me breakfast in bed....I love my kids, they do this every year.  Usually breakfast includes eggs with salt chunks or something strange with it...but I just pretend it's the best thing I've eaten.  The kids crowd around me as I'm eating, so I ask if they want a bite and sure enough they help me finish it which I'm thankful. ;)  This year's Mother's day was different.  I finally decided to not expect my family to pamper me, and instead I chose to serve them with an extra happy "motherly" heart and it ended up being far more meaningful than year's past.  And my favorite gift came from Tyler.  His gift was a journal entry from his journal on April 17, 2015.  It was such a tribute to me and funny all the while. I love that he keeps a journal everyday, I love everything about him.

Growth Hormone Level/Unexplained Fevers.  Alice's growth hormone level was tested and it was high, so we decided to reduce her dosage.  This should help with her aches and pains.  Alice has been having random unexplained fevers over the past few weeks, including bad headaches...maybe the headaches could be from the growth hormone, a known side effect.

IV in Clinic for Alice May 23rd. Two weeks of random fevers and headache is long so I called the on call doctor with Endocrinology to discuss the growth hormone and it's side effects.  Fevers are not a known side effect but the headache could be.  They suggested we take her to BMT, so the next day we were in clinic getting an IV placed and labs tested.  labs indicated elevated inflammatory markers, but nothing else.  She was given a dose of IV rocephin (antibiotic) and we stopped the growth hormone.  Since then the fevers and headaches have subsided.  Growth hormone and the dose will be our next discussion.

***Something huge to note...I was browsing through my blog to see when our last overnight hospital stay was, If I am right it was April 2014.  That is more than a year ago.  Sure we have had ER visits and blood transfusions, etc.  But we have not been admitted for over a year.  This is incredible.  Never have we gone this long without a hospital stay, not even close to this long. And this is real, not a dream, not wishful thinking.  I used to day dream of days when we were not always in and out of the hospital.  So thankful we are!! My dad always said with every new baby comes a great blessing...maybe this is the blessing Isaiah brought to us, this first year of his new life, as Natalie and Alice are experiencing their new lives.

The rest of the post is just This N That...every day is a wild adventure.  If it's not Alice peeing in her bed and our bed all within the same night, then it's Evie leaving silly putty on Blair's pillow so it can cake into his hair all night long.  We just roll with the punches and more often than not we're on the ground trying to punch with all our might.  It's like when you fall over on your bike but you just keep peddling while lying stationary on the side of the road.  And that's the way it goes...would we wan't it any other way....probably not. :)

Wishing everyone well,

The top left corner of the bed is my spot.  I managed to wake up before Tyler and snag this picture.  This is how our morning starts.  I can't say it's the most restful way to sleep.

Hmmm...what could she be eating? Have we not grown out of this yet!
The queen of chips and dip, and she makes her own.
Styrofoam....not good. I'm still finding it weeks later.
Sitting on the bench at the Little Redd Schoolhouse
Alice and Mrs. Redd, Alice went a handful of times to Mrs. Redd's preschool.  She enjoyed it!
I had come home from the store to find that Grandpa Schellenberg gave Evie a make over.  I laughed so hard, but apparently she bugged him about Grandma's new package of Make up until he finally put some on her.


The weren't getting along so they had to put their arms around each other until they could be nice.

Listening to Tyler read to them.
Tyler's favorite thing to do is read to the kids.  That is the first thing he talks about when he gets home from work.
This is usually what Natalie does while Tyler reads...she finds a book that interests her more.

Our neighbors have a pet snake.

Grace came to have a 'late night' with Natalie.  Best Friends in all the world!
When all else fails and dinner isn't ready, kipper snacks save the day.
Since DisneyWorld, Alice sleeps with Mickey every night.

This is what happens when you have girly girls, they try to make their own styles with anything available.
Look close, this is a hat for the toilet used to catch samples for testing, and measure output.  Well I had to recently get some samples from Alice.  Thankfully I sterilize everything afterward because Evie thought it would make the perfect bowl for her almonds.  I almost gagged when I saw it...needless to say Evie had a bowl of almonds all to herself.

Wrapping up the last week of school with some festivities.

Just loving the beautiful tulips at the Bountiful temple.
Pickle Juice!

Isaiah waving, an old video taken in Jan. (5 months ago)--he is growing too fast!!