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.

Friday, August 31, 2012

Girls are doing well and Blair goes to school

Day 254-Natalie, Day 227-Alice

Natalie and Alice are doing great.

Natalie's cough has improved since we started using a minimal amount of albuterol.  She uses a nebulizer on occasion.  Hopefully this is all she needs.  She still requires oxygen while sleeping.
Alice continues to improve.  When she eats wheat or dairy she has loose stools again.  We have decided to eliminate (as much as possible) those items from her diet until her gut is completely healed.

Blair started school this week.  He likes Kindergarten so far!  When I picked him up from school two days ago, he said, "I met a new friend today."  I asked him what his friend's name is, he said, "I don't know, but he has a plain shirt".

Evie is becoming very vocal.  She has learned that screaming can get her what she wants.  Tyler and I fell into this trap easily.  Anything to quiet a screamer, right?  Well, now we are trying to undo this process.  Sometimes we say things out loud...thinking no one is really listening; of course until you hear your child repeat it.  This morning Evie was screaming; we overheard Alice say, "Oh garbage Evie, stop screaming!"
Tyler and I looked at each other with a uhhh sort of look.

It may be a good idea to be a little more cautious with our words or how we respond to a certain situation.  These times of observation seem to sink in more when we are flustered or react with less control...which can happen around our house.

Mostly, problems can be resolved with simply just communicating better.  Recently Evie was screaming again, I looked down at her without saying a word holding back my urge to pat her mouth with my hand in disagreement.  I noticed that she was doing something funny with her face.  It took me a minute but I realized that she had puckered her lips for a kiss.  Once I kissed her, she ran away as happy as can be.  So thankful...I was, that I took that moment to understand what was really happening before denying her the attention and love she had solicited.


First day of Kindergarten...Blair used this backpack in joy school, he had picked it out himself.  He pretended he was flying to school.  So cute!! 

Matthew helped Blair get dressed.  When the boys came up stairs they were excited to show us that they were twins.

Saying good-bye to the girls.

Mom and Blair

Taylor and Blair
Blair, Sophie and Taylor

When I came in to help Blair find some pants he was playing a trick on me.  He wanted me to grab a pair of pants from his closet and when I did so he would scare me.  I told him to stay there so I could get a picture.  I thought it was so funny.
Alice was helping Mom help Blair.  By the looks of this picture you can guess who was next on my list to get ready for the day...or not. ;)

Okay, how many Binkies does one baby need?  Obviously at least five.  Evie loves to help me unload the dishwasher.  She immediately sorts through the utensil tray until she has retrieved all the bottle tops.  We always know where she is because there is a little squeaking sound that accompanies her.

Monday, August 27, 2012

Welcome Home Again Alice

Tyler and I both agreed that this past hospital stay with Alice felt like two days is all, however, she was actually there five days.  Somehow the time passed without knowing.  That might have been a good thing.  As far as her condition, she is stable and well.  Nothing really changed.  She still has diarrhea.  It should clear up soon, if not, we will reevaluate her medications.  Her current situation is definitely better than several weeks ago when she experienced true graft vs. host disease.  We are thankful that nothing major came from this past hospital stay.   Welcome Home Alice!!  It's always better when you are home with the family.  She gives us all direction and keeps us on our toes.

When I tucked Alice into bed tonight she checked to make sure the stepping stool was beside the bed so she could get out of bed by herself in the morning.  She likes to sneak into our room bright and early and scare us.  She does so by pounding on our mattress, which makes her giggle so loud that we all wake up, including Evie.  I will say that I'd rather wake to her giggling than the alarm Tyler downloaded for my phone....Dukes of Hazard Horn.  Not sure which I prefer; my other alarm to remind us to administer the girl's medications is a rooster crowing.

Natalie came into clinic today.   She did well.  I was worried that she might have pneumonia again because her lungs sounded bad as well as her cough.  Her chest x-ray looked great.  The pulmonary function testing was great.  Most likely she is having some asthma flare ups.  We considered this as well, however, wanted to make sure it wasn't something more serious.  The bone marrow team is setting Natalie up with a pulmonologist to help sort out the issues she is having at night with her oxygen.  Possibly she just needs her adenoids removed...who knows.

Natalie saw a little pink stuffed elephant in the gift shop as we walked by.  She asked to touch it, so I let her.  Once I saw that it was only $5.50 I told her that I would buy it for her if she was really brave when they did her labs.  She did awesome, I was so proud of her.  I guess elephants are the key.  She is crazy about elephants.  This little elephant has now joined Jerome under her arm as she sleeps.

Tyler had a great time with the other children while I was away with Alice.  He introduced the kids to the show MacGyver.  The kids thought it was awesome...although, Tyler was disappointed to see that The Italian Job copied MacGyver's idea with the mini coopers in one of the episodes.  I thought it was impressive that he even cared.  I remember watching MacGyver with my Dad when I was a kid...great memories.  My favorite episode was when MacGyver was snow skiing and was caught in an avalanche.  He managed to  blow a marker flag out his ski pole so others could locate him.  I always felt safe skiing in deep powder because I knew I learned some very valuable things from MacGyver. ;)

Enough rambling on...all is well at our house.  Thank you everyone for your kindness.


Pulmonary Function Testing...if you look close you can see that some of Natalie's hair is sticking up in the back.  It's so cute.  She keeps asking me if I will cut it so it won't stick up.  I'm trying to help her understand that it will have to grow out sometime. 

Natalie did awesome.

Checking out the gift shop.

Sunday, August 26, 2012

Back to the Hospital

Alice was still loading up her diapers on Thurs morning, 4 to be exact. So, we took her up to Primary's and the doctors checked her in. We think it is her GVH acting up again. She will be there indefinitely. They also placed her on a clear diet, which is always tough. However, Alice is always up for having a sleep over at the hospital. She settled in by climbing up onto the bed herself and pointed to the television and said, "Barbie Secret, Dad." So, while the nurses checked her vitals and Alice happily watched her latest muse; I eased into my own ritual of scanning the room and tried to remember how many times before we have had the chance to stay in room 4410. So far tests for bacteria and viruses have come back negative, but she still has a loose stomach which has puzzled the doctors. They moved her up to a Progressive 1 diet today, which means clears and a couple of selected vegetables. She is happy enough except when she is hooked up to the monitors. Hopefully tomorrow we will have more answers in regards to her levels and GVH.


Thursday, August 23, 2012

Who's Afraid of the Big Bad Wolf?

Today I struggled to remind myself that I was having fun and that I really do love being Mom.  I wouldn't rather be anything else, however, some days we do need to remind ourselves that 'it's all good'.  Usually discouragement sets in when things spin out of control.  I'm not sure what Evie ate, maybe a rotten bottle she found under a couch or something, but she has terrible diarrhea and a painful little bum rash.  She has needed a constant diaper change...the kind you do in a bathtub with warm soapy water to avoid wiping such tender skin.  She has been extra irritable and loud.  My ears hurt and my nerves are severely damaged.

Poor sweet Evie!

Alice had also needed many diaper changes due to her separate situation.

I had a list of tasks which needed my attention; my first failure of the day was that I did not include on the top of my "To Do List"constant diaper changes.  I would have felt successful if that were all I had on my list.  The real test of success is if I managed to adjust my list and attitude to accommodate the unexpected changes.

I caught myself saying today that I felt my agenda was too hard and I needed a break.  This got me nowhere fast.  I was on a downward spiral for a miserable day.

Something happened later in the day that changed things for me.  I over heard Blair singing a sweet little tune.  Here it is:

Who's afraid of the big bad wolf
Big bad wolf, big bad wolf?
Who's afraid of the big bad wolf?
Tra la la la la.

I quickly realized that I had forgotten something I already knew--I'm not afraid of the big bad wolf!  The big bad wolf is fear of carrying a heavy load, fear of chaos, feeling overwhelmed and feeling discouraged or feeling unmotivated.

Several weeks ago I was visiting with my sister and she told me a story when she was afraid and nervous during a particular time in her life.  She was driving down the road when this same little tune popped into her head.  She immediately remembered that our Grandpa Schellenberg used to sing it to us when we were children.  He taught us many lessons in life about working hard and keeping our chin up.

I began to sing along with Blair, and before I knew it I was laughing and playing with the children.  I was happy to just be doing what they wanted me to do.  I also noticed later that I accomplished more from my list of 'things to do' once my attitude changed.  Funny Thing, eh?

So why do we have to remind ourselves every day that we are not afraid of the big bad wolf?  Maybe it's because we are human!  That darn natural man seems to get in the way a lot!  The truth is...the more we make good choices the easier it becomes.  The more we tell ourselves that we can do it, the more we believe it.  I'm thankful for the small and simple things that keep us facing the right direction.


p.s. there was a comment on the Hula Dancer post about the music played in the video.  It's called "Baby Mine", Classics Songs For Bedtime, produced by Shadow Mountain Records.  Tyler and I have played this for our children at bedtime for a few years's our favorite lullaby collection ever.  So sweet, so peaceful.  I always look forward to bedtime when this is playing.  I just want to rock my babies forever!  My sister gave it to us, I think you can get it at Deseret Book.

Wednesday, August 22, 2012

Hula Dancer/Matthew in School

Here is a quick update.

Both Natalie and Alice are doing alright, each have been dealing with minor issues lately.

Alice's stools are looser again.  We realized there was an error in her medication dosage on our part, so we have fixed the problem and hope that her body can get back on track.  She looks great and feels good.  Her swelling has improved a lot.

Natalie's feeling more tired and looking pale.  We feel it is due to her oxygen situation at night.  Monday we will have the pulmonary testing done.  It's possible it is something very simple and easy to correct, or something less favorable.  I have arranged a better oxygen distribution for her at night.  She now sleeps with two blow-by cones on each side of her pillow.  It's working so far.  We have tried the nasal cannula and it's far too stressful to deal with.  The next step...if needed would be to create a sort of oxygen tent on her bed.  More news to come on the subject.

Matthew is as happy as can be.  He had a great first day of school.  Blair can't wait to join him next week.

Matthew's first day of school.

Evie seems excited for Matthew.
We all came out to see Matthew off.

The gang.

Here are some funny stories:

Today Evie pulled my hair and I said, "Ouch that hurt," as she held a strand of my hair in her hand.  Alice looked at me and said, "Don't worry Mom, there's another one hair," pointing to my head.  Yes, Alice you are right I do have more hair, I shouldn't let it bother me.

The other day Natalie came running to me laughing.  She wanted to tell me a funny story.  She said she was outside playing and over heard some other children talking, they said, "Why is that boy wearing a pink shirt?"  She found it funny that they thought she was a boy because her short hair.
I was happy to understand that she was able to see humor rather than embarrassment.

Yesterday I was trying to make my bed and became distracted with the two little girls.  We began playing and dancing.  I had my camera close by so I took a video of Alice and Evie.  If possible watch it on fast will be more funny.  When I showed it to Alice I set it on fast forward.  She laughed so much I wondered if she would loose her voice.  We have nicknamed Alice the Hula Girl.  I have no idea where she learned how to dance like that...the clip is a little long.


Monday, August 20, 2012

Awesome News!!

Our clinic visit today greeted us with great news.  The doctors were smiling from ear to ear as they delivered the news.   Here it is....Alice's whole body chimerism went from 55% to 88%!!!  This is amazing.  This means her cells are now 88% donor.  She is now that much closer to 100%.

It's quite interesting because her body has taken an opposite approach to what is normal under her medication circumstance.  Several posts ago we expressed concern that the large steroid doses would jeopardize her graft significantly, when in fact it has done the opposite.  Being that Alice has been a wild card on every agenda thus far, it was only partly surprising to learn of such a unique trend.  The doctors were taken back and had no solid explanation for these contradicting results.  However, they were pleased none the less.

Alice's white count is 3.3, ANC 924, Hemoglobin 12.0, Platelets 125 --- Great Numbers...we'll take it!

Good news for Natalie too.  She had great numbers from her labs last week.  Whole body chimerism is 96%, T cell is 94%, B cell is 100%.  She is doing great.  Although, she still has a lingering cough, it has not worsened over the past couple weeks.  She continues to require oxygen at night.  Next Monday she will do more testing in the pulmonary function lab to analyze her lungs and airways.

I asked the doctors about Natalie's official time schedule as far as returning to school and church.  They are confident that she can return before the first year is completed since transplant.  She can hardly wait to return.  The original date has been January (for school and church), however, she tapered off the cyclosporine medication sooner than planned. The general rule is to wait until a patient is off all immune suppressants for at least three months.  If this is the case and she remains healthy she will be eligible in October this year.  Sooner than we anticipated.  Of course, it all depends on what kind of flu bugs we are dealing with this fall, etc.

Matthew set out his clothes tonight for school tomorrow.  They are lying on the ground as if they are on a body.  He wanted to make sure he was ready.  I have filled his backpack with Clorox wipes and sanitizer to donate to the classroom.  He also has sanitizer attached to his backpack, and he knows that it is to be used often.

When Natalie needs some cheering up tomorrow I will pull out one of the great activities that we have received from sweet family and friends.  Honestly, we are surrounded by tender mercies...Thank You!!


When I woke Alice today I told her to get dressed so we could go to the hospital...this is how she came out of her room.  A beautiful princess dress and the crown to go with it.

We had a princess tea party while waiting to see the doctor.

And while we said Hello to some friends in ICS she gave us a show.  She was dancing for Emily's camera.

Saturday, August 18, 2012

Stylish Hair -- Zumba Fest

Thanks again to those who are heading up the Zumba Fest.  To the right is more information about the event.

This morning when Alice woke she said, "I feel better Mom!" with a giant grin on her face.  She also said, "look, my feet are little."  It was true they were much less swollen this morning.  She proceeded to explain to me that she wanted to get ready in a dress and wear shoes.  Note: her little feet have been too swollen for shoes.
We combed her hair and tried on a dozen different hair clips until she found just the right one to match her dress.  In the picture below are the boots she wanted to wear...Natalie wore them when she was little.  Honestly I was surprised and happy to see that Alice's feet squeezed into them--she was right, her feet were littler today.
She actually wore them for nearly two hours.

So cute Alice!  Her hair is getting longer.  Alice's hair is darker and more curly then before transplant.  The back side is more curly than the front.

We are going to miss those cheeks when they are gone.

Here is Natalie's stylish hair.  I tell her all the time that she looks great with no hair, short hair and long hair.  Anyway she does's cute.  It's amazing how quickly the girls' hair has come in.  Natalie's hair came in darker yet still straight.

Natalie, Matthew and Blair met their new teachers today.  Matthew and Blair are very excited to start school next week.  As we were leaving the school today Tyler and I noticed that Natalie was holding back some tears.  We asked her what was wrong.  She expressed her disappointment that she won't be able to start school next week.  She feels as though January cannot come soon enough.  Despite her disappointment she was glad to meet her new teacher.  Tyler and I reassured Natalie that we would play a lot of games and read a lot of books while the boys are away at school.  Natalie reassured us that we will be too busy taking care of Alice and Evie.  She does have a valid point.  It seems as though we will need to make some appropriate adjustments in order to satisfy both parties.  It is true that we will feel an absence of Matthew and Blair when Natalie is needing someone to play with.  On another note; when she complains that they tease her and bother her to the point of complete frustration, Tyler and I will remind each other that some good will come of the this.

This past Monday as we were leaving the hospital, Natalie saw another bird--she decided to chase it.  She actually caught it.  I didn't see it happen, so when she came running up to me she was laughing so hard that her words could hardly form as she tried to tell me what happened.  Then she said, "Mom, I need some sanitizer."  She must feel a surge of excitement to touch things that typically she isn't able to.  Children are supposed to interact with animals and such.  I was happy she caught it and that she felt the bird's feathers.

It's amazing sometimes what simple things we take for granite.  Naturally we don't realize what that is until it is challenged.


Many many thanks to all those who helped with the 5k.  We had a lovely visit with Julie and Jillyn last week, they have done a lot in our behalf.   They did go home with pedicures/manicures from Alice.
Natalie, Julie, Jillyn and Alice

Monday, August 13, 2012

Moving Forward

Day 236-Natalie, Day 209-Alice

Clinic went well today.  It was a long day as Alice received IVIG, so far she hasn't had any headaches or other unfavorable side effects of the drug.  Alice is still very puffy and swollen from the fluid retention due to the medications she is on.  Thankfully her blood pressure is stable...something we will continue to watch.  The doctors are going to speed up the tapering process of her evening steroid dose in order to manage her fluid retention.  Also she will begin taking Lasix, a medication which helps rid the body of excess fluids.

Alice's ANC was only 200.  She was given another shot of nulasta to boost her white cell production.

Natalie is doing great.  Although, she struggled today with the blood draw.  We requested the j-tip.  It numbs the skin so she can't feel the needle...still it was a challenge for her.  The vein stopped bleeding before they collected the proper amount of blood needed for testing.  She ended up getting her finger poked to collect the remaining blood.

Natalie's labs look great.  Her white count is slightly low, nothing of concern.  Good news, her B-cell chimerism is 100% donor.  Last month when they checked zero B-cells were detected.  The B-cells are the last cell line to recover from transplant so this is wonderful news.  They may not be functioning up to par yet, but they are there and this is great.  Her oxygen levels at night are still an issue, therefore they want her to do some further pulmonary testing.  Within the month she will have this testing done to indicate if there is a restrictive airway or something that might be causing her oxygen level to drop.


Alice's poor little ankles are so swollen the blue hospital band was on the loosest setting and still snug.  Alice spent most of the day in clinic eating. She had something in her mouth constantly.  It's great to be able to feed her when she says, "I'm hungry".

Trying to smile like Natalie.

I took this video of Alice and Evie a couple days ago.  They love being together most of time. ;)  They especially like to chase each other and giggle.  Evie is such a love bug.  She gives the best hugs and kisses to everyone.

Wednesday, August 8, 2012

Happy Birthday Alice!

Day 231-Natalie, Day 204-Alice

Alice turned three today, and was home to celebrate.  The first birthday of her life to be celebrated at home.  Her first birthday was spent in the American Fork ER.  Her second in ICS at Primary Children's.  It was wonderful to be home for this one.

She has been doing very well over the past week.  She is still very swollen due to the steroid.  She gained a fourth of her body weight in two days shortly after they placed her on the steroid.  Often we rub her feet and elevate them to help the swelling go down.  When she stands too long she complains that her feet hurt..they must be quite tender.

As for Natalie she is doing great.  She started eating dairy, but we think it's too soon, so we are cutting it out once again.  She continues to require oxygen at night while sleeping.  We are not sure when this phase will pass.  I don't know that she will ever get used to wearing the nasal cannula.  She complains about putting it on.  She sneaks it off during the night.  Some nights it's tempting to just turn off the monitor and let her be.  I know she dislikes being bothered while trying to sleep, as Tyler and I equally dislike getting out of bed each time to fix the problem.  Hopefully soon whatever is causing her level to drop will clear up so she can sleep without the tube in her nose.

Since the hospital golf tournament at the Homestead two weeks ago Tyler has been wearing his prescription sunglasses non-stop...including indoors and evening.  While at the tournament he handed me his regular glasses as he switched them, and somehow I vaguely remember him handing them to me let alone what I did with them.  We have searched and searched since.  They must be gone.  I keep teasing him about wearing sunglasses at night...I just think it's so funny.  Not so funny that I am the reason of his obnoxious situation.  I decided one day I would wear my sunglasses all day and night too.  It didn't last very long before I couldn't stand it.  Tyler is a good man, he hasn't complained a word.
 He found his written prescription and sent off for new ones...phew, hopefully they come soon.  I believe that when you are living in sheer survival mode you tend to follow the philosophy of 'out of sight, out of mind'.  I'm afraid I put his glasses out of sight.

The boys are getting excited for school to start soon.  I have mixed feelings.  I am happy for them to start and be around more people.  However, it has been awesome for our family to have no agenda except whatever we make of it each day.  Natalie is wishful that January will come she may join them.


She wanted a Care Bear cake...Aunt Jessica made the best Care Bear cake ever! 

She was so happy when she saw the cake.

We played pin the belly badge on the bear.

Pretty good Alice.

Evie could be a Care Bear herself.

Cinderella panties!

A perfect dress for twirling.

She can hardly stand the excitement.

Care Bear blanket and pillow case, and Ken and Barbie.  Alice loves Toy Story 3.

She put on a dancing show for everyone in her dress.

This says it all.  

She loved every minute of her party except when something didn't go her way.  Is there a name for the birthday melt down thing.  She was trying to pout in this picture.

Thank you everyone for helping make Alice's birthday so wonderful.  She had both grandparents there and some of her aunts and uncles too. 

Saturday, August 4, 2012

Cake for Evie

We love having Alice home.  She is still very swollen with fluids.  She asks to have her feet rubbed often.  The more she gets around the easier the fluid can move through.  Being home is great for her movement.  Interestingly, Alice is having a hard time keeping up with Evie.  At this point Evie walks fast than Alice and does the stairs.  It's hard for Alice to do stairs and tires easily when on her feet too long.  Truthfully, we are all having a hard time keeping up with Evie.

We celebrated Evie's 1st Birthday.  It was fun to be was LOUD.  Not exactly your fun playful party kind of noise, it was more that Evie has been experiencing with her vocal cords.  Wow, it's amazing how one so small can be so loud.  Alice does not like loud noises so when Evie hollers and screams it makes Alice get louder to try and stop her.  Finally I started to whisper to the kids and suddenly everything became quieter and calm.  They had to be so quiet to hear me...I love that trick.

Tyler and I feel like we stepped back in time with the many added medications Alice is on.  We have to remind ourselves that we need to be friends with the clock again in order to find efficiency with her med routine.

One of my favorite things is when I wake to one of my children standing beside our bed or even better when they climb inside.  Since Alice has been home she has come to the bedside each morning making little noises and giggling. When I look over at her she is holding my eye glasses and hands them to me.  Then she says, "I hungry Mom!"  This phrase is something we hear almost every 10 minutes...even after she eats.  Sometimes she rubs her tummy and says, "My tummy is hungry."  Her little belly is very extended and often hurts.  We are helping her understand that once she has food in her tummy she needs to let it rest before she eats more. She will physically feel full after eating but mentally she still craves food.  This hard for her to understand.  This is one of several side effects to the steroids.

And just for the record, we will someday regularly wake up before our children...that's when things get done.  However, Evie is an early bird, she is up no later than 6:00/6:30 but loves to come into our bed and play while Tyler and I pretend like we are still sleeping.  I think pretending makes us think we are getting more sleep. Tyler and I have to remind ourselves to be patient and that someday a full night's rest will come.  With that said, I think the majority of people regardless of circumstances find sleep to be a delicate thing and restful sleep often hard to come by.


                Before cake we had to have our spaghetti and of Evie's favorite dinners.

The cake turned out alright it was gluten free, dairy free, yet tasty.  It doesn't look very good, decorating cakes is definitely  not one of my talents.

This little cradle is a Total Class Creative gift.  It is so cute and simple, Evie played with it over and over, putting her doll to bed many times.  She would take her baby out, kiss her and then tuck her in.  It never got old, she did this for at least an hour.  I wondered if she would be old enough for this kind of play.  She knew exactly what to do and was completely content...nurturing truly is inherent.

Friday, August 3, 2012

Alice Came Home Today

The Doctors told Tyler that Alice was ready to go home.  He was so excited, called me and said, "We're coming home and we will be there by noon.  I quickly called pharmacy and made sure all the medications were ready for him to pick up before they left the hospital.  Alice's medication list is lengthy, but hopefully we can start eliminating them one at a time as she continues to improve.  She also has two added IV infusions in the evening.  It took me a minute to sit down and create a new chart for us to follow with the proper doses, etc.  We are so thankful that Alice responded so well to the steroid treatment in order to control her graft vs. host disease.  The doctors told us that they were pleased with how well she did.  They anticipated it being much more difficult...even weeks longer as it often can be for most patients.

When troublesome news comes along, in general people immediately search for something that may be to their advantage despite the trouble.  In this situation we agreed that at least her new marrow is strong and wants to be active.  We just need to give it more time to play nicely with Alice's own tissue/cells.  Hopefully in the long run it will pay off.

She is happy to be home.  When Tyler pulled up in the driveway I was waiting outside.  I opened the car door and she said, "Hey where is everyone?"  She walked into the house and again as always, said, "I'm home!!  It's me, Alice. I'm home!"   

Since she has been home we have been dancing around her, making little meals here and there and filling the tiniest requests--it's a busy job...but a great one!


Thursday, August 2, 2012

Happy Birthday Evelyn--Update on Alice

Today Evie turned ONE!!!  Because Alice is still here in the hospital we will wait to celebrate Evie's birthday.  I have yet to find a few more ingredients to make a gluten free chocolate cake for everyone to enjoy.  Of course Evie will not even know the difference and if I do it right the rest of us won't either. ;)

                                                    Here's to the birthday girl!

And this is Evie's invention...this is the way she likes to have a Binky.  It works for us.

As for Alice--she had a great day, with the exception of a few bumps in the road this morning.  She had a couple temper tantrums and was difficult to console.  I tried to make things better and failed at least twice.  The physical therapist came to work with her; I saw this as an opportunity to slip out before I had a temper tantrum myself.  I slipped on my running shoes and headed for the nearby gym.  I decided I was going to run for two miles.  It sounds pathetic, I know; however, right now two miles is a big accomplishment for me ;).  I did it!  It felt great and I was ready to come back and tackle whatever came.

Alice had a normal diaper, YAY!  She has been taken off TPN and Lipids because she is eating plenty.  This is wonderful.   I gave her a lovely bath and pedicure, she enjoyed it.


Wednesday, August 1, 2012

Munching Alice

Alice has been here two weeks today.  In a way it seems as though it has been longer than two weeks, thankfully she has made huge improvements over the past couple days.  She is now on a progression two diet.  She has an appetite of a bear due to the steroids she is on.  She will drink up to 3 liters a day in watery apple juice and she eats and eats.  We hope her diapers will have more substance to them with her increased diet. 

The steroids create quite the emotional roller coaster.  It has been a challenge for Alice to control her emotions as she is on a high dose of steroid.  It would be hard for a small child to understand why they feel frusterated and such.

I was home with the other children for the past two days, so when I came today to be with Alice I was surprised to see how much she has changed.  I think she has gained almost 5 pounds in two days.  It was a wonderful thing to see her eating to her hearts content.

I showed Alice a picture of Evie today and she said, "Ahh...I lost my Evie!"  I know she misses being with her siblings.  Natalie asks often about Alice and calls her many times to talk.  The boys miss her too, however, they have been busy making booby traps for the bad guys.  They had taken yarn and made a cob web like trap in their room.  Sometime later I could hear Evie crying.  I went to folllow where the crying was coming from and there she was all tangled in the boys' booby trap.  I told Blair and Matthew to come quickly because they just caught the bad guy. 

Blair then decided that his bad guy trap wasn't all that practical so he said, "Ahhh...I have a better plan".  He and Matthew worked again for some time until the new plan was ready.  They then demostated to me the new plan.  Blair walked into the yarn, which was tied to the sink, causing the tension to pull the sink handle forward to make the water run.  He said, "Now when I get up in the morning it will be easier to brush my teeth, because the water will already be on."  You're right Blair, maybe this will help motivate you to brush your teeth...was my thought.

Here is a great quote.
       "What lies behind us and what lies before us are tiny matters compared to what lies within us."
                  --Ralph Waldo Emerson


This is the face she had when her food arrived.

A lot of food for a little girl!!
  We love the people in food service, they searched the hospital for the last three purple popsicles...they know what Alice loves.