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, October 28, 2012

Catch Up

The last three posts (which I did today) are back dated for my records.  I have been slacking.  As long as I have the main things recorded...I'm happy.

Sunday--Home With the Girls

Tyler took Matthew and Blair to church with him today, while I stayed with the girls.  We had a good time playing and eating.  Evie was in heaven to have much of my time as I just played with her.  Natalie was a little sad she could not go to church.  We played UNO, Flippin Frogs, Blocks, played in boxes and baskets, and read from The Friend Magazine (Natalie's favorite).  It was fun...until I turned on the church music (Mormon Tabernacle Choir singing Primary Songs).  Natalie bursts into tears and said, "I want to go to church!"  She misses that feeling of church.  It's true there is a special feeling at church.  I know she feels it at home as we read scriptures, sing primary songs, etc.--but you really can't replace being in church.

I tried to console her, she said, "Mom I wish the doctors would let me go, can you ask them again?" 

Who knows...maybe it will be sooner than we think. 

Usually kids don't want to go to church because it's too long and boring.  I remember thinking this when I was little.  Maybe the trick is to tell them they can't go...then they will want to go ;)  Isn't that how everything works. 

MAYBE...we are closer than we think we are.  I hate to speak too soon, however, it's been almost a week since the girls' flu shots.  So far, no hospital stays, and no fevers.  I know for a fact, had they had a flu shot with their original immune systems it would have been disastrous.  Tyler mentioned that he wrote in his journal that possibly this is the first moment of evidence that things are working the way they should in a healthy immune system.  I said to him, if this be so, then it is a reason to rejoice.  I pray that our feelings are true and continuous.

Natalie was able to have her friend Grace over for a late night recently and they had a great time.  It was awesome to see Natalie interact like everyone else.  Of course Grace and Natalie are two peas in a pod, and entertaining each other is effortless.  I need to say for journal purposes that Grace has been a HUGE blessing for Natalie.  She totally understands and relates to Natalie.  They act like's so cute.

No clinic tomorrow...we are carving pumpkins.  Tyler's favorite thing to do with the kids...and sometimes without them ;)  I have no idea what he has up his sleeve this year.  I'm sure it will look great.


Our favorite toy...A Box.  These two can't hear music and not put on a tutu.  They dance to everything.  I'm so glad we have plenty of princess things and tutus.

I asked Natalie to watch Evie while I took a shower.  This is what I found.  

She had to find a basket somewhere...which means whatever is inside is now on the floor.  It was worth the shower.  It doesn't matter anyway...all things are dumped out.  My least favorite is when they tip over a garbage can for a stool and it doesn't matter whether it was full or not.  Some things we will only miss when we our children are grown and gone.

Natalie requested her favorite dinner...baked chicken legs.  Evie loves them too...and doesn't like help eating them.

Saturday, October 27, 2012

Long Night For Alice

Sometime after I went to bed, I had a hard time falling asleep as I listened to Natalie cough on occasion.  I got up to give Natalie her Albuterol when I heard Alice coughing/gagging.  I quickly ran into her room and saw that she had vomited all over.  It was terrible.  Her central line was drenched.  I had to give her a bath to clean it all.  She wasn't happy about being woke in the first place then placed in the tub.  She just wanted to sleep.  Unfortunately I also had to change her dressing.

I was thankful Tyler came to help.  I didn't want to wake him, but was relieved to have his help.  We put her back to bed.  This happened another three times along with terrible diarrhea.  All hours of the night, she would cough and I immediately had the pink bucket under her as I sat her up...then would have to change her diaper each time.  By morning I wondered if a train ran over me. 

Tyler and I were confused as she did not have a fever.  We were thankful yet confused.  We wondered if maybe she ate something bad, or the flu vaccine was making trouble, or she had caught something.  We were expecting to have another hospital stay, although, by morning she was okay.  She kept her breakfast and medicine down, and hasn't had trouble since.

We are not sure if we have only seen part of something or if her body really managed to get over something on it's own.  We hope it's gone and that the other children do not have similar symptoms.

Tyler wants to sleep with her tonight and keep an eye on her.  I am looking forward to a good night's rest.


Thursday, October 25, 2012

The Purple Cast Comes Off

Alice went to the orthopedic doctor today.  The x-ray indicated more healing.  The lower inner part of the bone has begun to fuse together.  The top portion is coming along, however, needs more time.  The doctor removed the hard cast.  We considered leaving it on longer, although did not because she walks on it anyway and it creates more risk of falling because of how tricky it is to walk on. The boot will be easier for her to get around and will protect her leg equally.  In two weeks we will return to the doctor and check her leg again.

I was so happy to give her a bath and wash her leg.  Baths were tricky even before she broke her leg, then the cast complicated things more.  We can't get her chest wet (Broviac line) we can't get her ears wet (ear tubes) and then we couldn't get her leg wet.  This left us with very little room to wiggle.  Not much fun for playing in the tub, although, she managed to play some with the inch and a half of water and a leg propped up.  There is always a way to manage...we just have to accommodate.


 I came down the stairs last night and Alice was wearing this hat.  She stopped me and said, "I'm Pirate Alice!"  She pretended she had a sword and was going to fight me.  We have been teasing her that she has a Pirate peg leg.
I wanted to toss the cast in the garbage at the doctor's office, but I thought the boys might like to see how it is made, so I brought it home.  When Blair came in from school and saw the cast, he wanted to put it on the porch to scare people on Halloween.  He said it would be spooky.  I think it's more creepy than spooky.  It is no longer on the porch...

Alice's new outfit.  A walking boot. 

It must be the smallest size they make.  It was special ordered.

Monday, October 22, 2012

Clinic and Flu shots

Day 306--Natalie, Day 279--Alice

Clinic was a little busy today.  The girls did okay regarding their numbers.  Natalie's ANC is 1600 which is great, and Alice's is 600 which isn't great, Alice's counts should be higher because she received Nulasta two weeks ago.  The truth is that Alice's body does it's own thing.  She doesn't like to follow any rules or trends.  The doctors are very surprised how healthy she has been considering her consistent low counts.

Natalie had another x-ray today and her lungs show no sings of pneumonia.  Hooray!!  She does however cough plenty.  Her labs were done with a finger poke.  This was a huge blessing.  She is very cooperative with a finger poke.

Sometime later the happy atmosphere changed when the nurse entered the room with the flu shots.  Alice was crying because Natalie was beyond upset and was a rough 10-15 minutes.  I wanted to start crying with the girls.

Of course I was worried about giving the girls a flu shot.  The doctors had to keep reassuring me that it will be fine and it is very important they are protected.  In the past I would feel sick to my stomach about immunizations.  I didn't feel strongly either way this time, just worried because of our troubles in the past.  I had to keep reminding myself to trust the doctor as well as the girls.  I will be on watch for the next week as the girls' immune systems processes the virus.  It was not a live virus, thankfully.

Alice does not need to be seen in clinic for two weeks and Natalie a whole month.  This is another first for us!  We hope and pray that we don't have anything unexpected arise in the meantime.

The other night I asked Natalie to read books to Alice so she might become sleepy.  Natalie found plenty of cute books to read to her.  Alice said, "Natalie you're a nice sister."  Tyler and I wanted to pause the moment.  It was so sweet to see them together happily.  We wanted to capitalize on this because it's not always peaches and cream.  Both tease plenty and even being almost 6 years apart...they get at each other more than enough.  It's worth the struggles for the moments of harmony.


p.s.  Natalie is mostly on a normal diet and so far so good.  I am not sure if I want to get excited yet, until more times passes.  I hope this continues.  We are still cautious with wheat and dairy, however, I can't has become easier in regards to cooking.  I have a little more freedom and I have learned more about substituting certain ingredients as well.

My next post I should dedicate to Matthew and's due time.

When Alice comes to clinic she knows which toys she wants to play with.

Natalie keeping a heat pack on her flu shot.

Natalie wanted to enter the art contest at the school.  She is so proud of her work and has been telling everyone that she is in a real art contest.  Reflections.
Some mornings we find Evie trying to go to school with the boys.  She grabs any backpack in reach, puts it on and heads out the garage door.   This time I caught her before she left the house.
Alice asked me to take a picture of her doll because of her red smile.  I love it...dolls are always happy.  This doll and another like it have become the favorites around our house.  When Evie is around she insists on holding both together.

Tuesday, October 16, 2012

Clinic Free Week

Natalie and Alice did not have clinic yesterday.  This is a first for Alice to go two weeks without labs, etc.  Natalie was so happy to have a week off.  Alice didn't seem to care either way.

Natalie developed some itchy skin, possibly hives two days ago.  We wondered if maybe she was experiencing some graft vs. host.  I called to Salt Lake and they said to give her Benadryl every 6 hours for 24 hours.  If the rashes respond to the Benadryl then she does not have GVH.  So far so good.  It is possible her antibiotic is creating the rash.  This is something we are sorting out.

We always worry about the girls regarding the good flora in their systems after such prolonged uses of antibiotics.  They eat a lot of yogurt, however, the doctors suggest not to use probiotics just yet.  It will be a hard transition for both of their bodies to find a good balance.

Sometimes when I find myself in la la land I imagine that I am microscopic and can travel inside the human body.  I envision myself investigating all the processes of the body and solving all mysteries and wonders of what is happening inside and what to do about it from an outside approach.  I'm sure one day when we learn the mysteries of God we will realize how simple it all is.  Simple yet fascinating.

Alice had an appointment with the orthopedic doctor today.  Her x-ray indicated that her leg is healing, however, she is required to stay in the long leg cast for another 10 days.  She is almost two weeks behind schedule of a normal healing process.  We expected this to be the case.  When they switch it to a short leg cast she will be allowed to walk on it.

It hasn't been as hard as we expected with her in a cast.  Because of her forced stationary state she has lengthened her attention span and can play for hours by herself with only a toy or two.  Whatever is in her reach becomes entertainment.  I think some good is coming from of late she has been trying to walk on it.

Maybe I could use a broken leg...all the reading I wish to do might come to pass. ;)

Thanks again for your love and support.


Matthew's game...who would have thought there would be an owl at a flag football game.  It was awesome, Natalie couldn't keep herself away from the owl.  The girls don't normally go to the games, but this was a nice surprise.

Alice found her money bank and said, "Mom, I am ready to go buy ham!"  She loves ham sandwiches, and we were out of ham far too long according to her.  It's one of those things when you head out to the store and your kids tell you what they want and somehow you forget to get it....over and over again.  I counted her money and she had enough to buy a quarter pound of ham.


Thursday, October 11, 2012

Over Looked Updates

I keep forgetting to record some additional updates.  They are worthy of recording. 

First of all I did hear back regarding Natalie's counts from Monday's clinic visit.  As we suspected, they were good.  Her ANC was 1800, platelets were 126, Hemoglobin (red cells) 12.5.  We are still waiting on her more recent chimerisim.

Good news...over the past several days Natalie has not needed oxygen at night.  She is doing awesome on room air when she sleeps.  We know the pneumonia she has battled is improving, which helps her oxygen levels, as well as more aggressive therapy for her asthma. 

Recently the doctors suggested giving Natalie gluten again, very little amounts here and there to she how she does with it.  The doctors as well as us, are very interested in knowing if she truly does have celiac or just couldn't tolerate gluten due to the chemo damage done on her gut.  As her gut heals from the chemo she should be able to tolerate the gluten if she does not have the celiac disease.

I received a great tip, I gave her raw beets unpeeled for several weeks.  This is believed to help with gluten intolerance.  Not sure, but I did it anyway.  So far she has not complained about tummy pain when she has a little gluten.

Three things could be happening.  #1.  She is not telling us whether it really hurts or not. (I don't think that is the case) #2.  Her gut is healing more and she is able to tolerate the gluten.  or #3. Either the beets helped, or she isn't able to detect the symptoms of the gluten immediately.  Hmmm...we'll see.

Regardless, I hope to always be proactive and aware of what is in the foods we eat.  Being gluten free avoids a lot of processed foods and junk foods.  It forces you to find better quality.  As everything...there is a balance.

The other day I came in the house from running an errand. Natalie had a little smirk on her face.  I asked her what was so funny.  She said, "I keep sneaking on my bike to the school...I look in different classroom windows".  I was a little caught off guard.  I told her she needed to tell us when she goes.  I understand why she peeks in the windows...she wants to be there.  I wish she could be there now.

I took a big stuffed elephant to her classroom.  It will sit in her chair until she is able to be in class.  The elephant has a backpack and will bring her homework home each week.  Also we included a disposable camera for the children to take pictures of what they are doing in the classroom.  We have sent pictures with the elephant of what Natalie is doing at home.  This will help the class and Natalie to feel connected when she is able to go back to school.  The child life specialist at the hospital gave us this wonderful idea.  Thanks!!!


Tuesday, October 9, 2012

The Would Ifs and If Onlys

Clinic was good good as expected.  Natalie had plenty of labs, which is always a struggle, but she did it.  Alice received another shot of Nulasta.  Counts are okay, we assume.  Natalie's were still pending when we left...I have yet to hear back on them, however, they should be okay.  Alice's ANC was 400...thus the Nulasta.

I was able to visit with the doctors for a bit (non-related to our day's visit).  We do have some great conversations, however, this time they just listened to me as I expressed my emotions regarding Natalie's recent hospital stay that gave us quite a scare.

We discussed the oddness of her seizures going so long (3 years) undiagnosed.  They had no tangible characteristics of seizures, thus they were overlooked as something less complicated and serious.

I shared with the doctors all the things I wish I would have done differently during her illness of swine flu (in which these seizure problems stem), as well as all the things I wish the doctors and nurses would have done differently.  Also I was expressing concern and frustration as to why it took three years to realize that her little "funny feeling" episodes were actually seizures.  I told them I just wanted to vent for a they let me.

Let me tell you what happened...something I want my children to know.  Something that will be a part of any life's experiences.  As I was sharing my feelings about the would ifs and if onlys; I began to understand something I thought I knew.  It will be hard for me to explain.  I will do my best.

Over the past eight years since Natalie became ill for the first time, Tyler and I have wondered on many occasions:  Did we do it right?  Should we not have given her those immunizations?  Should we have taken her to the doctor sooner?  Was there something we could or should have done differently?

There are more questions of the sort than there is time to write.  Regardless of what did or didn't happen, the most important thing to understand is that we did our best.  Everyone did their best.  It occurred to me at that moment in clinic that we HAVE received the best case scenario regarding the well being of our children.  The nature of the beast has left its mark, but only a mark.  I felt a peaceful feeling come over me as I allowed myself to accept the idea that Heavenly Father has provided the best case scenario.

Another influence less desirable would want us to adopt the concepts of...if only we did this, or if only we did that.  This is a dangerous way to think.  It cannot change the past nor will it better the future.  It's safe to take comfort in the truth that when we are striving to do the best we know how--the if onlys and would ifs carry no's best to abandon them. 

When we left the hospital that day, I thanked Heavenly Father for teaching me a lesson that I needed and one that I will continue to need.  Of course we will experience sorrow, heartache and regret in this life; this is mortality.  However, the Lord does not intend for us to carry this in our pockets all day long.

Lastly, Tyler and I feel relieved that Natalie is doing well.  This last scare was a blessing in disguise, as it surfaced something more threatening.  Its funny how many "blessings in disguise" we need to experience...I think we have filled our quota for a while...that's my vote anyway. :)


I love the children's book Zen Shorts---this post reminds me of that book.

Natalie liked the Halloween decor in the gardens.

As always...requested by Alice to make a wish in the pond.

Natalie said, "Mom I just want to touch the water without sanitizing my hands after".

Good Morning Alice...ready for clinic?

Friday, October 5, 2012

Natalie Came Home Yesterday

I haven't had a moment to post since Natalie came home yesterday afternoon.  We are so happy she is home.  She came home with no lines and only two additional medications.  She wanted to be home badly.  Yesterday she was still not feeling well enough to be herself and play, although she did ride her scooter for a few minutes.  Most of the afternoon and evening I rubbed her head and back.  She has had a terrible headache since she came home.  We suppose it must be from what she endured over the past several days.

Her back still seems to be very sore from the spinal tap.  Thankfully today she complained less of headaches.

We wanted to do something special today for the kids.  We took them to a pumpkin patch and let them pick a pumpkin.  It was therapeutic for all of us to be outside in this type of setting.  October is a lovely time of year.  It was perfect weather today.  I didn't even take a picture...what's wrong with me.  I need to be able to prove to my children someday that we did do something besides hospital stuff.  I suppose I was just enjoying the moment.  I wish to have a giant pumpkin patch someday...just like the children's book Spookley The Square Pumpkin.  Natalie must have been expecting Spookley's kind of patch, because she asked where all the different colored pumpkins were.  I realized then that our children have never been in a pumpkin patch...until now.

For some reason I feel like I just ran a marathon...more so an emotional marathon.  I will admit that this last hospital stay with Natalie caught me off guard.  I didn't see it coming and felt unprepared emotionally.  I remember as she was leaving with Tyler, I felt like I needed to give her an extra long hug.  I did.  Two hours later when the doctor was finally able to get a hold of me, she briefed me on the situation and emphasized the seriousness of it.  The doctors know I don't like anything sugar coated; therefore, she wanted to prepare me in the event that it became worse...she did mention this is how they loose some of their children.

The drive to the hospital was filled with thoughts of every kind.  My most frequent thought was..."Was that the last hug I would give Natalie"...then would follow thoughts of hope and trust in Heavenly Father.  I know there are many mothers in this world who have given their last hug to a child.  I wish to express my most sincere love and empathy to you.  Yes, there will be a time when a mother's arms will be embraced by those they ache for.  To me, this would be worth it all!  I was reminded of my older sister who has given her last huge in this mortal life to three of her sons.  I have amazing people in my life, in whom I admire and wish to become more like.

W express immense gratitude for your prayers and faith in what you believe.  We're very blessed with more than we deserve.  Thank you!


I know I have unfinished information on my posts regarding tests/results/medications, I feel satisfied to have something recorded.  I just hope someday It will somehow make enough sense for the girls to understand.

Natalie was happy to be home with her favorite buddies.

Natalie could not keep her lips off Evie.

It's always a good time when we are all together again...Tyler was the tackle target this usual.  After a while he had to free himself before things got out of hand.
This is how Alice gets around these days.
Jessie came to visit Natalie and play games with her.

Wednesday, October 3, 2012

Neurology Visit--More Answers

This morning neurology and ENT came by.  The ENT doctor felt Natalie's sinus status wasn't the source of her problems.  However, we think we found some new puzzle pieces through neurology.  I do not feel adequate explaining it at this time for reasons # 1. It is not entirely confirmed.  # 2. I can't remember some of the terminology to report accurately.  

I will make a summary of what I can.

Since Natalie's swine flu incident in Nov. 2009, she has had reoccurring episodes of a "funny feeling" in her head causing her to curl up in a ball, requesting we rub her back and head.  This would happen anywhere between several times in a day… to once a month; sometimes nothing for two or three months.  We asked many doctors about this.  Nothing was determined by doctors.  We felt it was related to her brain injury from swine flu.  The damage done in her brain was mostly in the area of her right Occipital Lobe (a less threatening area).  

We thought the episodes could have been related to her eye sight.  She was seen by ophthalmology two years ago; all was well.  After consulting with other specialists, we concluded that it could easily be post traumatic stress syndrome, or something similar to anxiety.  We seemed to notice the episodes more when she anticipated a needle draw or anything related with the hospital.

She managed them well and they would improve.  However, we are told today that those "funny feeling" episodes have been seizures; subtle and hard to pin point.  This recent batch of seizures indicates that she is becoming more vulnerable.  

The MRI (from neurology perspective) of yesterday showed new traces of scar tissue in another area of the brain; the right Mesial Temporal Lobe.  This area, if altered can contribute to unexplained seizures...or can also be known as Epilepsy.  

They aren't diagnosing her with Epilepsy because they are not sure she fits the mold entirely.  However, because of this new scar tissue she is more susceptible to seizures especially when illness is present.

The neurologist wants to keep Natalie on Keppra for three months and repeat another MRI in order to determine the change.  

The dizziness she was experiencing is gone.  We learned that she was given Dilantin in the ER to stop the seizing.  This drug stays in the system for a few days and causes dizziness and confusion.  Problem solved.
The last few days have been interesting as it has provided more depth to Natalie's condition, in which we were mistaken.  We are thankful her body manifested itself now rather than later in a more threatening way; in order to find proper treatment.  Had we not discovered this (her episodes continue untreated), it could have become a much bigger problem.  

With proper management she should not know any differently.

Natalie is feeling homesick and wants to come home.  When I left today she broke down.  Tyler played a lot of games with her which helped cheer her up.  We are wondering when she might come home.  It could be tomorrow, it could be in a week.  

Because they know she was septic and haven't been able to source the bacteria, they may be more conservative in discharging her.

So much has happened over the past week…our heads are spinning.    

As for everyone else, things are looking good.  Thanks again for your love and support.


I have a few pictures to's too late so I will add them later.

Tuesday, October 2, 2012

Back to ICS

Another day moving forward.  Natalie has improved tremendously today.  Her mental status is coming back more.  The anti seizure medication can cause her to be slightly loopy.  It's called Kepra.  Possibly she will not need to be on this medication too much longer.  We are anxious to see if the Kepra is in fact causing her dizziness and loopiness....not sure if that is a word.

She had an MRI taken today.  They had to sedate her again to accomplish this.  The results have not been clearly stated at this point, although the MRI does indicated sinus surprise.  Neurology will explain more tomorrow about their findings.  We do know already that the injury on her brain that occurred during her swine flu intubation three years ago is still prevalent.

The area of the brain where the damage occurred with swine flu is in the back section.  It has affected her memory and ability to process information, which we had noticed three years ago.  It has improved over time and we hope it continues.  We really hope this recent trauma did not increase the existing damage.

Natalie ate food today and loved it.  She ordered a huge meal by request, we let her knowing she would only eat a little.  Her tummy needs to start simple...but her eyes are big.

When we came to ICS it was like coming home ;)  She was happy to be in a familiar setting.  She went straight to the window to find the temple in the city.  I heard her say; "Yep, there it is...I see it!"

We played games and watched National Treasure.  She enjoys American history or anything that has to do with the American flag; she kept asking if the treasure was real.  I started to read the Declaration of Independence to her...she feel asleep.  A little too young still.

I have another couch bed tonight...wahoo!

More news tomorrow and many thanks for the continued messages of encouragement.  We are so lucky to have many amazing people praying for us and cheering for us.


stretching as we walked to MRI (about 10 yards)

Just drifted off and ready for MRI


She was so relaxed afterward and slept for a while

Lunch was welcomed graciously

Monday, October 1, 2012


Today was completely busy. Many things happened. The most important event occurred around 1:30 p.m. Natalie's breathing tube was removed. The respiratory therapist and the doctors felt like the tube was creating too much anxiety with her and felt they needed to bite the bullet and just remove it. This was the greatest news to us and came without warning. This idea was no where in the works today, but it was exactly what needed to happen. Tyler and I just feel like the nurses and doctors have been very in tune regarding Natalie's care.

The breathing tube was becoming very difficult for her to manage. She was mostly awake while intubated. It can be the most freighting and uncomfortable thing. She struggled the entire morning desperately trying to communicate things to us. She couldn't talk because of the tube. She acted like she was yelling to communicate. We tried to remind her that we understand that she wants to tell us something. She often pointed to places on her body that itched or needed attention.

Occasionally she would show some signs of relief and comfort.

I asked her if she wanted Daddy to give her a blessing. She nodded; Tyler gave her a sweet blessing.

I finally realized that she must be incredibly confused as to what was happening. I climbed up next to her on the bed and gently spoke in her ear. I explained to her from the beginning of how she became in this situation. It was apparent that she needed that and could not remember how she became in such a situation.

She would point to things and I would explain what it was. I introduced many new faces to her.

Alice came to clinic today and afterward came to Natalie's room to visit. Natalie seemed happy to see her.

I knew that I needed to take Alice to her orthopedic appointment. at 3:30 for her hard cast. I really wanted to be able to take her....however; I felt I couldn't leave Natalie while she was so agitated.

Tender Mercy #1-- I was getting ready to leave with Alice, but feeling horrible about it--just then the doctors walked in with the respiratory therapist and announced that they are going to jump ahead and remove Natalie's breathing tube. I immediately felt a huge sense of relief and knew it was the right thing. It was done in 15 minutes; in fact the respiratory therapist asked Natalie if she wanted to do it herself. Of course, she wanted it out. The very moment it was out she took a huge sigh of relief with a big breath of room air. It was a beautiful thing for all of us. My eyes began to swell with happy tears.

We thought Alice was unaware as to what was happening, she was sitting in a chair away from Natalie, but over in the corner as the tube was removed we heard Alice cheering..."Hooray, Natalie!"

One of the first things Natalie said was, "Am I in the white hospital? Where is the window? Is this the basement?" She is so familiar with the fourth floor and beautiful views that she felt disoriented here in the PICU.

The next thing she said was, "Who is spending the night with me...MOM?" Of course I am Natalie....Of course! Grandma Schellenberg was visiting at the time, which also gave Natalie more comfort.

It was time to take Alice to get her hard cast. I felt 100 times better leaving Natalie knowing that she was happy and comfortable. Tyler stayed with her while I left with Alice.

Alice was very excited about a purple cast. She will wear the long leg hard cast for two weeks, receive another x-ray, and then change to a short leg cast for another couple weeks. She thinks the next one will be pink, in which we hope for the kind she can walk on.

When I arrived this evening to be with Natalie again she was happy to see me. Tyler had been playing UNO with her. Later Grandmother Fish and Aunt Amberly came to visit. She enjoyed the visits.

Tender Mercy #2--Natalie is hungry, can only have clear liquids, she's upset she can't eat. She decided that a slushy would suffice. The nurse asked her which flavor she would like. Natalie said lemon. The nurse explained to Natalie that they only have orange and pink. Natalie really wanted lemon. The nurse said, okay I will see if there is lemon, knowing there is only orange and pink...this is all they ever have. A few moments later the nurse walked in with a surprised look on her face. She handed a lemon slushy to Natalie. I asked the nurse if they change the flavors ever, she said she has worked here for a long time and has never seen other flavors.

It is very obvious that Natalie's improvements and sweet moments are delivered to us through answered prayers of so many...THANK YOU!!

Just before Natalie fell asleep she said to the nurse, "Oh dang it...I was home, riding my bike and scooter, I was at school, I woke up and it was a dream."

Medical Status Update:

CT Scan indicated nothing.

Cerebral Spinal Fluid was clear, however her white cell count was elevated at 25. It should be 5. This could indicate a type of meningitis (inflation or infection), but not likely. At this point nothing has grown from the CSF.

Her VRP (nasal swab) was negative.

Nothing has grown yet in the blood cultures.

Aspergillus was positive (fungal infection)...more information to come.

Tomorrow she is scheduled for an MRI on her brain.

Natalie is dizzy, still not at her mental status baseline. She comes in and out. She is looking good, compared to this morning and yesterday. We hope her mental status will improve each day.

She has two IV's, One artery line, a central line in her leg and a catheter.

She has a scratchy and sore throat from the breathing tube.

The infection she has is/was septic. When she was given meropenem her body went into a spin as it was breaking up the infection. It later stabilized and had improved. This was hopeful and helped her septic status greatly.

Septic infections create low blood pressure.  Seizing creates high blood pressure.  It has been a challenge to keep her blood pressure under control.  She is taking Norepinephrine keep her blood pressure up.  As long as she is on this medication she will be in the PICU.

Maybe tomorrow they will move her to ICS.

Tyler and I feel much better today. I will admit that yesterday shook me pretty good. Tyler was calm and confident that she would be well. I drew strength from Tyler and it helped me greatly.

It's hard loving someone so much and wondering over and over again if they will be with you one day and possibly not the other. I know Mom's have to be tough, still it's hard to protect your heart where it hurts most. Many times I have reminded myself that Heavenly Father knows what he is doing, I trust him...I do.

Thank you for the texts, words of encouragement, messages, etc. It makes a big difference.


This is a long post and must have plenty of errors...I just needed to hammer it out so I can get some sleep.

Natalie was trying to smile...and that is one tired/worried Mama.

The artery line in her wrist.  It looks very tender.

pumps and monitors

Listening to Grandmother's voice on the phone.

Alice came to visit after clinic.

Natalie smiling so cute with Grandma Schellenberg.  So happy to have the breathing tube out!
I had to get some pictures of "the white hospital" for Natalie to help her confusion, her PICU room is in the center of the second story of windows.
South Side
North Side/Main Enterance

Alice's purple cast...I think she was winking for the camera.  Anytime I carry Alice she will  say; "Can I take my leg with me?"

Aunt Amberly and Grandmother Fish with Natalie...getting sleepy.