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.

Monday, December 30, 2013


ANC: 1100

HGB: 13.8

PLTS: 94

This past week I’ve have to stop a couple times and realize just how long this stay has been for Alice. We’ve had so many stays over the years that most of them blend together now. If it were not for the records we keep as a family, many of the details of our daughter’s journey would be left to the fleeting memories in our minds. It’s been a tough month, and a great month. So many of you have come to our aid and provided to us the love and generosity we could have never expected from the beginning of this journey.  It has been difficult to watch Alice endure a virus that seems to linger far past the expected time it should have taken to expire. I noticed today on her left hand new shingles are presenting themselves. I know when the doctors see this it will tack on more days to Alice’s stay. I hope not, but we know the drill too well.

Yesterday we received a call from the hospital informing us Alice had gagged up her NJ tube. She will require another tomorrow morning. So, tonight some of her medicine would be required to be taken orally. That of course was an event unto its own. Patience and selling were required and after only thirty minutes I had exercised both and achieved success. I really do wish this stay was over with and that we had Alice home. To be honest, it can be much more difficult to have her home, because so much care is required for her. At the hospital the nurses are able to do much of the work. However, there is nothing like having your family all together. The schedule of taking care of a family when one is in the hospital can become confused because it is so difficult to stay on the same page with all of the logistics involved. Many times the kids feel like they have taken the back seat. Helping them understand that we love them just as much can be a difficult sell sometimes.

Above is a time laps I made over the holiday. Usually I will get a full day in, but this time I forgot the camera at the hospital so it ran for a couple days. It may be longer but it shows how often Alice requires care day and night. When it becomes dark you can see the periodic visits from nurses during the night as their headlamps illuminate the room. In addition to the night shots, you can see Alice’s foot movements because of the red light on the toe.

 Some of you have asked how I do the time laps shots. What you need is a camera that has a setting to take a picture automatically every minute or thirty seconds. I think most digital cameras now come with this particular setting. Once you have the pictures you will need some multi-media software to combine all your pictures into one shot. The time laps below was shot at thirty second intervals and combined into one shot at 23.98 fps (frames per second). I'm not an expert, but its been fun to learn.


Tuesday, December 24, 2013

Merry Christmas Eve

December 21st (Day +64)

ANC 500
Hemoglobin 9.1
Platelets 144

Infectious disease doctors stopped by today, the rashes along her face, foot, leg, and back are looking darker, which means they are beginning to heal.  The sooner she can clear the shingles the better...obviously, but then her immune system can focus on the CMV.  Currently her forces are split between two major viruses, she needs to win first one battle to be able to successfully win the next.  So anyway, the infectious disease doctors were happy enough with her improvements.  By next week we should know how well the CMV is responding to treatment.

My Sweet Grandma Duncan passed away this past week.  We will miss her.  I was blessed to live so close to her and would visit with her as often as I could.  I have learned so much from her over the years.  She is someone I wish to become.  Even her last words to me were..."How is Alice?"  I know she will watch over Alice...she worried about her just as I do.

Grandma Duncan and I...this picture was taken at my Grandpa's funeral just a handful of months ago.

Jake and Tami visiting from Huston, Josh visiting from Hawaii.
We've had some visits from our far away family, who have come into town for Grandma's funeral.

Little Evie, picking out a few of Alice's things...hoping maybe she can get out the door without Alice noticing.

A lovely visit from Grandma Schellenberg...all the way from Spain.

And of course Cooper....we love Cooper visits.  He knows how to cheer Alice up in a hurry.

December 22nd

ANC 100
Hemoglobin 10.9
Platelets 110

Alice will start receiving neupogen daily.  The gangcyclovir that she is receiving to fight the CMV has a side effect of knocking down her counts.  Her counts should recover when she no longer needs gangcyclovir.

Each of the nurses have been asking Alice if Santa knows that she is in the hospital.  Without hesitation, she nods YES.  I do believe Santa is very aware that she is here.  I told her that Santa always goes to the children in the hospital first.

December 24th

ANC 100
Hemoglobin 8.0
Platelets 143

Today the doctors came in to deliver some good news.  Her CMV level dropped to 4.2 from 4.4, this is excellent news...because it could mean that she is responding to some of the treatment and we are heading in the right direction.  I was so happy to hear this.  Honestly, this is the best Christmas surprise I could have asked for. 

It seems as though she still has some new shingles (spots/bumps) appearing around her body.  We keep thinking that the shingles should be on it's way out, but not quite yet...although, the pain seems to be slightly less.  The morphine continous pump was reduced from .5 to .2 with the ability to add an additional dose of .5 when needed.  I almost feel like her nausea has improved with less morphine, however, we still have to push for the additional help when her pain flares up.  Eventually we can drop the continous.

Alice needed blood today, her hemoglobin wasn't quite low enough but because tomorrow is Christmas they decided to give it to her today.

Lisy--Merry Christmas!

Having a very sleepy day
Cousin Paige came to bring Alice some Christmas cheer.  So cute, thanks Paige.  When Paige found out that Grandma Schellenberg  was coming home from Spain to attend the funeral of my Grandma Duncan, Paige asked her mother Amy if she was coming from Space...where she had been with the stars.  Kids are funny! 

Little Everett, sweetest boy ever!  Paige and Everett are Joe and Amy's children.

This darling note came with the LDS representative when he delivered The Friend Magazine.  I agree, we hope for Valentines Day we are home. :)

Friday, December 20, 2013

December 20th

ANC 500
HGB 9.1
HCT 26.1

The past couple days I will admit have been really bland. We seem to have been in a lull that will only change once we see more improvement in Alice. I came up on the 18th and once I entered the room and saw her countenance I could tell she was still a long way off from being herself. Her eyes were long and her frown permanent. Her communication is still to only point and grunt. She will speak, but only when the two initial lines of communication won't do. I was able to get her out of bed and walk over to the couch where some toys were. As she sat and stared out the window, the snow fell on the parking garage. It had stacked up several inches and I decided to change things up. I asked her if she would like to see me go outside, on top of the garage and wave to her. She nodded and I went. I wondered perhaps the idea was more for me than her. In the end it benefited both of us. I was glad to get out of the room for a minute and she was happy to see a change of scenery.
This stay has been a tough one. Mostly because we didn't expect it. Which makes being at the hospital through Christmas that much harder. We are so grateful for what Primary's and others have done for us during this time. Christmas at the hospital really is a great experience. Santa comes and visits and there is all sorts of activities provided to the children. The tough part is having the family split up on Christmas Eve and Christmas day. However, we will make the best of it and feel grateful that we still have our little Alice with us. That of course is most important. Both Lisy and I again  are so grateful for the acts of kindness to us during this time. We would not be able to handle this schedule and the emotional ups and downs without all of you. Really, its true. We could not do this with out you. We love you. Merry Christmas.


Tuesday, December 17, 2013

Dec. 11th - Dec. 17th

I haven't posted in a while, so I will give a quick update and for record purposes I broke each event down by the day.

Alice is doing a little better.  Her shingles seem to slightly be improving.  Her morphine dose has increased so it's hard to say how much of her improvement is real or just masked by the pain killer.  Her rash continues to spread down her left leg and onto her left foot.  The rash on her mouth and along the left side of her face seems to be improving.  She has been talking more.  This is always very reassuring.

Oh how we wish she didn't have to experience the shingles.  A friend asked me how she got the shingles. We are realizing it was inevitable, apparently we have learned that the antiviral that she was receiving (foscarnet) which was to protect her from the Zoster virus (chicken pox and shingles) from reactivating, wasn't effective.  Her body has created a resistance to this drug.  Unfortunately we learned this the hard way.

Also we have learned that CMV (Cytomegalovirus) isn't responding completely to the treatments.  This virus has mutated within her body and therefore will become harder to clear.  The infectious disease doctors said they have had some success in the past with treating mutated CMV.  Mutated CMV and resistence to foscarnet are both rare.  We aren't so worried about the shingles as we are the CMV.  At this point we believe that CMV is only in her blood...with that said, CMV being in her blood it has the potential to enter any area of the body, including organs...anywhere.  Currently she is on gangcyclovir (anti-viral) to help combat this virus.  We will know by next week how successful gangcyclovir is/was.  Truly the best treatment for CMV is a mature immune system, unfortunately Alice's immune system isn't considered's working though!  And this we are thankful could be a much bigger battle.

We anticipate she will be home in time for Christmas if the NJ tube holds true. :)

When came to be with Alice a few days ago I began cuddling with her and loving her.  I said, "I'm going to eat you!"  She said to me, "If you gobble me up the nurse will say, 'Where is Alice'?"


December 11th

ANC- 700
Hemoglobin- 8.9

Received IVIG--this will help her immensely with her battle in fighting these viruses.

A visit from Natalie, of course before we knew Alice had the shingles.

December 12th

ANC- 300

Received blood.  Also she needed a dose of neupogen to boost her white count.

Feeling the pain of shingles, with no outward signs.
So happy to be back with Alice tonight.  Our new room with the double doors.  Her smile is the best and biggest smile I have seen in days.

December 13th


You can see that she responded well to neupogen, her ANC bumped up, this is new for Alice.  In the past it had little effect on her because her body was so full of mal-functioning antibodies, the antibodies would gobbled up any new cells the minute the neupogen stimulated them.  So this is good news.

Aunt Amberly stayed the night with Alice tonight.  Thanks Amber.

Little Zoe came to give gifts to Alice.  Sweet Zoe is familiar with hospital life and oh so cute.  She explained to Alice a little about Disney World.  Alice seemed interested and when she is feeling better, I'm certain she will have more questions for Zoe.
A visit from Barbie...always fun.

December 14th


Grandpa stayed the night with Alice tonight.  Thanks Grandpa.

Just being cute even with the shingles.

Grandpa sent me this picture of the Elders bringing the sacrament to the room...later Alice was able to have a Primary lesson too.  We are thankful to be a part of this even away from home.

December 15th


I came in from doing laundry and she had this crown on...just hanging out.

December 16th

Hemoglobin-14.5 (not sure how accurate this is)

Such a disappointed princess look.
Now that's a little better...maybe her recent win helped her feel better.

This is the game...Pretty Pretty Princess.  She loves it.

Enjoying her new nativity set.

And of course Mom's make up always helps boost her spirits, and provides a little moisturizer on those dry lips...there is some benefit to her using my make-up.

December 17th


Today we placed a NJ tube.  It was time to take the next step in helping her along.  The oral medications were becoming too overwhelming.  An NG tube wasn't an option as every time she vomits it would come up.  I made sure the doctor knew that I wanted this to stay down.  Her feeds will begin to run 24 hours a day into the NJ.  The rate will start very slow and continue to increase as she tolerates it.

Going to fluoroscopy to get an NJ tube.

A little nervous, but she did awesome and held still.
All done Brave Alice.

Wednesday, December 11, 2013

Here through Christmas, but good news.

December 11

Great news for Alice. The tests came back negative for GVH and CMV in her organs. Such a relief, we can now focus on her shingles virus and CMV in her blood. She will receive a steady dose of anti-viral medicine. The trade off will be that it will cause her counts to go down. It will still be a difficult recovery but a more possible recovery none the less. We will be here for at least a couple weeks, which puts us here through Christmas. That part is a bummer for sure, but it still feels better to know that the situation could have been worse. Her rash has been progressing and her counts dropping, but that is to be expected for now. She will probably need blood tomorrow. In terms of her recovery it has been necessary to take a step back in order to move forward again.


Tuesday, December 10, 2013

December 10

It has been a tough few days for Alice. Most of her time has been spent muscling through the uncomfortable pain on the left side of her face and leg. Her vomiting was so consistent that I could plan on every half hour to be by her side with a pink bucket to catch whatever came up. Sometimes there would be blood in the mix and others only bile. Understandably she has no apatite and certainly does not want anything to do with anyone touching her. It is so sad to see her this way. I can tell the doctors and nurses are more concerned too because they usually see an Alice who is excited to be in the hospital. We don’t know what is happening to her. Both Lisy and I are of the opinion that GVH has set in. Nevertheless that doesn’t explain the pain she is having in on her left side. 

Alice’s face has broken out in what seems to be a small rash on her left side. From her bottom lip up to the left side of her head are red dots. I called the doctors in to show them the new discovery and it became more clear to them why she the pain exists on her left side. Shingles. I’ve never had shingles before, but our Matthew has. I recall him complaining of pain in his back for a couple days before the rash presented itself on his leg. The doctors reported that Alice’s rash placement is not common. Usually the symptom is pain in the back and rash on the legs, shoulders or back.

 Another bit of bad news is that Alice’s tests have shown that she has CMV in her blood. The CMV is very concerning because of the possibility of it making its way into her organs. In addition, we have still not received word on whether she has GVH. If the tests come back stating she in fact does have GVH and CMV in her organs the doctors will have to play a difficult game of balancing the way they will treat her. When fighting GVH an increase of steroids is the path. When fighting CMV and the Shingles virus an increase in anti-viral medicine is the path. The balance game comes into play with how each of the paths cause the other to react. An increase in steroids will suppress her immune system which will slow down GVH, but allow the Shingles virus and CMV to run amok. An increase in anti-viral medicine and decrease in steroids will allow the GVH to progress. It would be a difficult situation that could turn in to a more difficult circumstance. We should know the results of the biopsy by tomorrow. 


Monday, December 9, 2013


Sunday, December 8th

ANC 800
Hemoglobin 8.8
Platelets 173

Today was one of the hardest days for Alice, so far this stay.  About the time I came into her room at 4:00 p.m. to switch Tyler places, she did not look good.  I watched her for a moment and she didn't seem to respond normally.  Also her oxygen levels were dropping.  It was disturbing and the nurses were worried. They called the NP who was on for the day to peek at her and examine her.

I quickly sat beside her on the bed, rubbed her back, aroused her some, talked with her....within moments she seemed less distant and her oxygen level bumped back up.  She clung to me for a long time and insisted that I lay in her bed with her all night.  She improved each hour.  I obviously didn't sleep much, but I wasn't worried about sleeping.  I was just incredibly relieved to be with her and adhering to her every request.

She was placed on a very small Morphine drip this morning because of the pain; due to her despondency in the afternoon we felt it best to remove the continuous Morphine drip.  She seems to be feeling more normal already.  Her pain management will be given as needed now.

Alice continues to complain of pain and nausea.  Tomorrow we hope to fit her into the surgery schedule for a gut biopsy.

In the evening Alice sat on my lap and watched the church's Christmas Devotional.  I wondered if she would even enjoy it.  She was so content to watch and listen to the music and speakers.  It was comforting and peaceful to both of us.  

Monday, December 9th

ANC 700
Hemoglobin 8.8
Platelets 175

Today Alice seems slightly better.  She interacts with me more.  Of course you can imagine how comforting this is for me, although, she continues to vomit often, I feel there is a bit of improvement.  The operating room was able to get her in much sooner.  I was happy.  She did well with the biopsy.  I just waited outside the room.  It was fast and soon we were back upstairs to our ICS room.  The doctor said her stomach and esophagus looked very irritated in certain areas.  The irritated areas were biopsied.  We should hear the results of the biopsy within a day or two from pathology.  

It's possible that her pain and stomach sensitivities are from tender and over active nerves.  This can happen to kids who have been given a lot of medicines and chemo-therapies.  It's possible that she is allergic to something she is on, it's possible that it will be GVHD, and it's possible that we are seeing Campath rearing it's ugly head.  Campath can have delayed effects around day 50.  Campath was part of her aggressive preparatory regimen for this second transplant.  She was given Campath back in September.  I sure hope we aren't going to see mouth sores all over again...and really hope it's not GVHD.

Anyway we had a pretty good day today.  She didn't say but three words all day, she was more awake and willing to paint with me.  We read many many books, including some Christmas stories.  She will motion to me and pat her bed...letting me know that I need to lay beside her and read.  We decorated her room with many little purple stars the primary children made for her; on each star is written get well wishes...we read them all.

Just as I was tucking her in and saying good night, she said her third word for the day..."lullabies".

Sleep Well Alice!


On our way to surgery

Saturday, December 7, 2013

Clinic, Clinic Again, Impatient

Monday, December 2nd--Clinic

ANC 1300
Hemoglobin 10.1
Platelets 191

When I took Alice to clinic today I wasn't sure if they would keep her or send us home.  She has been struggling to keep her medicine down.  She complains her tummy hurts more each day, including her ear/face.

Dr. Pulsipher decided to cut back the Foscarnet to once a day, since her CMV level from last Monday was very good.  He felt like the Foscarnet could be contributing to her increased nausea.  I feel like her nausea and diminishing diet has followed the same trend as her steroid taper.  Foscarnet hasn't changed.  But the doctors always start ruling out the little things first before jumping to the bigger things.  I understand that.  It can be frustrating at times though.

We held off on the NG tube, we want to see if her stomach will improve with cutting back the Foscarnet.  Dr. Pulsipher decided to stop the steroid taper.  I was happy to do so.  Her calorie count was increased via TPN.

Alice loves the new toy in clinic...she knows every toy they have and enjoys seeing a new toy when they come in...and always wishes she could take them home with her, but understands and appreciates the fact that they will be there when she returns. 
Exhausted after a long day.

I thought I would post about Natalie's project she did with the help of many others.  I want her to remember it.  My dear friend Nicole is the Young Women's President in her ward and learned of a girl Natalie's age who is in need of a cleft palate surgery.  Nicole arranged some of her young women who were in need of a project and some service hours to put together a boutique and bake sale, in the meantime they included Natalie by helping/teaching her how to sew scarfs and make crafty things.  I was so thankful for this opportunity given to Natalie.  Nicole, the young women, and Natalie did all the work.  They were successful and were able to raise over $600.00 to give to Sparrow's family to help pay for her surgery to fix her cleft palate.

Wednesday, December 4th--Clinic Again

ANC 1400
Hemoglobin 9.9
Platelets 182

We were scheduled to come in tomorrow (Thursday) but we didn't think it would be a good idea, Alice needed to be seen sooner.  Her ear was hurting more and she was struggling even more to keep the medicine down.

Dr. Boyer decided to put her back on Foscarnet (anti-viral) because her CMV numbers increased...apparently the lab results from last week must have been incorrect because her CMV labs were not consistent...darn!  I really liked the mistaken value.

We inserted an NG feeding tube.  She wasn't happy about it but willingly held still.  Sweet Alice, I am so sorry you have to go through all this.

We will start the feeds at 5ml/hr, this is hardly anything, due to her stomach sensitivity we want to start very slow.  The NG feeds will run for 24 hours.

Still the doctors were not able to see any infection in her ear....and no fever.  She is obviously in pain, with no explanation.  Her teeth look fine and her face isn't red or swollen.

She didn't feel like seeing anything on the way home from the hospital.
After replacing this tube six times in one day due to vomiting bringing it up...I was done with the NG tube, I'm sure Alice was even more done with it.  I made a decision to leave it out and stop the feeds.  I also feel this is best for her tummy anyway.

Thursday, December 5th--Impatient

ANC 1500
Hemoglobin 9.5
Platelets 170

After last night Tyler and I knew Alice needed to be admitted.  She vomited around the clock and wasn't able to keep any medicine in her tummy.  Her cyclosporine levels are dropping because she can't keep it down.  She acts miserable and in terrible amounts of pain with her ear/face.

Upon arriving to ICS, the medications that are available via IV were switched over.  This will give her tummy a huge break...phew!

The doctors ordered a CT scan, to help them determine what is going on in her ear, etc.  She went down just an hour after being admitted.  She is so cooperative and willing with the's second nature to her.  The technician commented about how many times she has done scans, etc. on Natalie and Alice.  We've been here too long.

Alice was given morphine for her ear/face afterward and seems more content and relaxed.

Friday, December 6th (Day 50)

ANC 1000
Hemoglobin 8.7
Platelets 185

CT scan came back mostly normal...little bits of sinusitis.  Nothing helpful showed up in her ear or elsewhere indicating such reason for pain.  She is being treated for an ear infection with IV antibiotics (cefapine) anyway.  I would imagine she will start feeling better shortly, and will want to talk again.  I am more concerned about her tummy than I am her ear.

By Monday if we have not seen improvements in her tummy and nausea the doctors will likely order a scope of her GI track to really learn what is happening.  Maybe it's a virus and will pass...wouldn't that be great. Alice will be here at least until Tuesday, if not longer.

Alice hasn't said a word all day (now it's 7:00 p.m.--nurse shift change)...shortly after a bout with the pink bucket, she looked up to me and said, "Who's my nurse today?"  I can't tell you how happy I was to hear her voice.  I smiled so big.

Alice is such a funny girl, since she came home from transplant...she continues to say in her prayers, "Bless me to get back to the hospital" --Alice please stop praying to go back to the goodness! We know what she means in her prayers...she is praying to be better and associates getting better with staying in the hospital, and she does like the hospital.  Anyway, we are going to get better and will be back home soon.
Thanks again to everyone for your love, support and prayers.

Alice is on Day +50...we're taking it one day at a time...and already 50..WOW!
I can't believe this but I think I forgot to post some time ago that Alice's chimerism was at 100% even before she was discharged from transplant.


Last Week--Just for Fun

 Alice swinging under the willow tree.  It was the last warm day to rake the leaves before the snow storm.  I love willow trees...oh boy, they are a lot of work.  After we raked all the leaves and filled a huge trailer, it looked as though it had not been raked.  
The pumps go with Alice, where ever that may be.

This is the willow in the summertime.   When Alice was a little baby we got that green swing for her.  The older kids just swing on the vines.
Natalie's tutor Amy, took Natalie and I out to lunch to celebrate Natalie's hard work.  We had a great time and enjoyed some awesome food.  I have never been to Tia Siam, only heard it was good.  Natalie and I loved the food.  It was a fun little outing for us.  Natalie ate much more than I thought she would.  I was so happy to hear that approx. 80% of their food is gluten free.

Snow Days are Back
Here's the first snowman of the year...Natalie made him with green olive eyes, a carrot nose and an almond smile.

I am so happy to have these boys...they keep each other entertained.

Sunday, December 1, 2013

Clinic--Tummy Trouble

This past week in clinic (Monday November 25th), Alice's counts were still good.

ANC 3100, Hemoglobin 10.3, Platelets 184

This is the first time in a long while that her platelets have been considered in normal range.  Her Hemoglobin is getting there.  ANC still good, dropped a little but plenty high as it is.

We considered placing another feeding tube, but decided to give her another week of eating and taking her medicine on her own.  Likely next week we will place the tube and try to take her off TPN in the next week or two.

When Alice woke this morning for clinic she was crying...I asked her why and she said, "my doctor is leaving".  Yes it's true Dr. McManus is moving to Tennessee.  We will miss her.  This was Alice's last time to see her.

During The Week--

Thanksgiving Day...Trampoline time.

Tyler made some awesome gluten free banana bread with the kids.

Sunday Dec. 1st

Here is a quick update since this past Monday.  Alice has declined, regarding her diet.  Her appetite is shrinking each day.  It hurts too much to eat.  She vomits more and her tummy is in more pain.  Her steroid medicine has been tapering more and her decreased appetite could be related to less steroid in her body, or it could be her new marrow having more reign under less immune suppression, which might be causing some acute GVHD.  Obviously we hope this isn't the case.  Tomorrow in clinic we will place a NG tube and hope the following week will improve.  If not, I assume they will do a biopsy of her stomach and gut to see if something is happening in regards to GVHD.

She complains of ear pain.  Tomorrow the doctors will take a peek into her ear.

She has energy and is happy.  Still keeping us laughing, she is very entertaining.

More tomorrow....or when I have time to post in the next few days. :)...sorry for the dry and to the point post.  I have thought through every scenario in my head as to her declined appetite, it can be very exhausting.


Friday, November 22, 2013

A Week at Once

Boo Boo the Bear

This is a darling video the hospital produced...they wanted Alice to be a part of it, and were willing to wait for her to get better to come film. Enjoy!

I have fallen behind with posting.  I am not surprised, here at home my time is limited.  While in the hospital I could find more gaps of time to post while Alice was napping or asleep for the night.  I hope to post again once a week, here on out.

So here is what has happened this week.

Monday Nov. 18th (Day 32)--Clinic

ANC 4700, Hemoglobin 10.9, Platelets 123

All things looking up!  The doctors increased her feeds to 15ml/hr.  Her CMV increased slightly, not to worry as we have dropped her Foscarnet to twice a day.  We hope to keep it at twice a day and not three times.  CMV can be a real bugger if it gets out of control.  For Alice her CMV numbers are very manageable.  No infusions needed in clinic.  It was a smooth and fairly fast visit.  Our first visit back to clinic in nearly six weeks; a nurse had pointed this out to us.
Leaving Clinic and she refused to wear was raining/snowing outside.  Crazy girl.  She at least agreed to let me wrap her blanket around her legs.
She wanted us to notice her hairdo.

Helping Aunt Amberly put up her tree.

That next to the tree is Alice's IV pole.

Helping Dad rake leaves...not really.

Who would have known this 'handy cart' would be so fun.

Tuesday Nov. 18th--Good-Bye NJ tube

Alice said good-bye to her NJ tube today, she was happy to see it go.  Unfortunately we hadn't planned to pull her feeding tube, but it was clogged and we had no choice.  I spent at least a total of 4 hours today trying to unclog her tube.  When we increased the rate of the feeds in clinic yesterday it allowed the feeds to complete before her morning oral medications are scheduled to be given through the tube.  The medications are very sticky and even flushing with the proper amount of water, the line clogged.  Normally the feeds help push the remaining residue through the tube; something to remember next time when we change the rate.

We called the doctor and we decided to leave it out until clinic next week.  She is keeping her oral medications down nicely and surprisingly she'd rather take them by mouth than in the tube, at this point.  I really didn't like the tube myself, however, we want to get her off TPN asap (TPN is hard on the liver), so therefore she may need another tube to bridge the gap between her diet now and what it should be without TPN.  She isn't eating enough calories to be off TPN and tube feeds yet.  The next tube we place will most likely be a NG tube (stomach), in which if it clogs or is removed we can replace it at home ourselves.

No Tube :)

Wednesday Nov. 20th--Natalie

Today Natalie had an appointment with Neurology.  We saw Dr. Bale, and reviewed her current tapering schedule of Keppra.  So far so good.  We hope to avoid trouble as we come completely off Keppra, of course still on Oxcarbazipne.  Natalie actually cooperated well for this appointment.  I was so impressed and proud of her.  Normally she is very upset and unwilling to communicate with the doctors...she is burned out; but surprised me today.
Natalie couldn't wait to get back from her doctors apt. because she had plans to make Alice a princess club (behind the couch).  Only people who are wearing pink, purple or have a dress on can come in the club.  

Thursday Nov. 21st

I think Tyler and I are slowly acquiring a routine, I just noticed that Alice's backpack of clothes from the hospital has yet to be unpacked. (No wonder I can't find those particular outfits)  Had it not been for Tyler's mother who came to help one morning nothing from the hospital would have been unpacked.  I spend all day running around with pumps, medicine, saline flushes, alcohol swabs and more in my hands; setting them down and not remembering where I put them; forgetting what I started and didn't finish; forgetting to pick up a child from school and sometimes even forgetting to brush my teeth for the day...okay I'm sorry but that might have been too much information.

I did manage to make chicken soup today using a whole chicken.  Alice wanted it, so I made it.  She took two bites and was done.  Then she wanted rice, potatoes, tomatoes....the list goes on.  Tyler and I will go to great lengths if it means she will eat.  Some foods hurt to eat, others just don't sound good...but we spin circles around her.  In a few weeks this phase will get easier and life will slow down.

Her favorite food right now is a Kipper Snack, with a side of fresh cut tomatoes...I wish I could eat this way, I would be much healthier.  Go Alice!!  When she can't finish her kipper snacks (sardines) then Evie or Blair will clean them up...sloppy seconds.

We have Grandpa Schellenberg to thank for introducing the kids to Kipper Snacks.