If You Give A Mouse A Cookie

I know it has been awhile since my last blog post when the phone calls, texts and facebook messages start rolling in.... Thank you all for your continued support.  I am sorry it has been awhile but starting my new job has kind of consumed me. 

Things with LillyAnna have not changed much.  She is still vomiting profusely.  She vomits intermittently throughout the day and then at night the real fun begins.  My mother-in-law had the pleasure of sitting with Lil for bedtime the other night.  She summed it up pretty well when she said, "You just have to see it and experience it to really understand how horrible it is.  It is horrible." 

We saw the great Dr. R last week.  Because LillyAnna's blood work has been pretty consistent he said we do not have to get it done every week anymore.  On the surface that sounds like good news but the only reason we are not getting it is because it is not helping us help her.  He told me that it is up to me if I think she needs it more often.  In other words, if she does not look good- get the blood work.  That is good and I am so honored he trusts me to make that decision but it does feel like a little more pressure.  It is just one more decision I have to make based on "how she is".  I told a good friend of mine today that she was having a bad day.  She asked what a bad day looked like.  On  a bad day Lil wants to be held more, she grabs at her body and says owie, she will sit in her highchair for longer than any two year old should with her head slightly leaning to the side very quietly, and she just does not look good.  She is pale, a little lethargic and her eyes look sad.  The beautiful thing about Lil is that she will pick herself up and move past her discomfort.  All it really takes is a bit of distraction.  My well meaning friends and family sometimes tell me I need to slow down and not do so much but Lil always seems better when we are doing something interesting or we are around family and friends so it is worth it. 


For about a week, her hair has been falling out in clumps.  Dr. R says that it is most likely from the trauma she experienced last summer.  He said that they see it often in their transplant patients; they go through something physically traumatic and about 6-9 months later their hair falls out but grows back.  We are hoping that is what this is.  It already seems to have slowed down but I can see that it is thinner. 

Dr. R is going to talk again to GI about Lil and see if we need to do some repeat tests.  Apparently some of the medications she has been on can cause anatomical problems so the anatomical problems we looked for before that were not there may be there now.  Great.  He would like to do a stool sample to look for an inflammatory marker that indicates Crohn's Disease.  The problem is that we are already treating her for Crohn's.  If we are already treating her for it and it is still this bad, that does not seem good.  Of course I screwed up the first stool sample because it sat in my fridge for over 24 hours (sealed tightly in a cup AND a bag!).  Thanks to lots of badgering from my dad I got a new specimen cup and should be able to bring a specimen in Thursday. 

Despite the adorable pictures I like to post of Lil seemingly eating, she is not.  She eats very little and vomits all of it up.  Which is why she is losing weight.  The good news is that she is still growing taller which means she is getting enough nutrition... for now.  This week's news is that she is suddenly drinking an obscene amount of milk.  I mean like a lot.  It has been going on for about three days.  I was hoping to get one of Dr. R's glib remarks when I emailed him about it.  You know something like "drinking is good".  What I got was "keep track of how much she drinks tomorrow".  People we are with get so excited when she eats something.  I try to share their enthusiasm but in my head all I can think about is how the more she eats the more she is going to vomit later.   

I am enjoying my job.  I really do love working in restaurants and bartending is especially fun for me.  You are so busy and in the moment, it reminds me of practicing yoga.  It takes focus and your brain does not have room for worry.  That is until it slows down and I have time to think but I am getting better at that too. 

You were right about working.  It does get my mind off of things and Chris has been amazing.  So have our friends and family who have really stepped up and offered to help with bedtime on the nights that I work.  Chris is thinking about some strategies he can use to be able to do it himself and so we will not need someone every night but for now, I cannot tell you how much your support has meant to us.  Besides being messy it is just emotionally exhausting to watch Lil throw up for hours each night.  Having someone here to give him the chance to clean up, get a shower and take the stress off of making sure the twins are in bed is so helpful. 

In our society people are always saying "Hi!  How are you?"  I always felt proud that I answered "Good!" and I really meant it.  No matter what is going on in my life, I am usually able to keep my head up and find the positive.  When people ask these days I find myself saying "ok" or just smiling.  I have never been a good liar. 

Just Me and My Dad

When LillyAnna was in the hospital for two and a half months last year Chris was basically a single dad of 4 year old twins except for one thing.  He had a very sick baby and wife to take care of in the hospital.  I remember one time after we had been in the hospital for about a month.  I came home for one of my very short visits to lay with the kids and read a book before bedtime while my dad was at the hospital with the baby.  When I walked in the kitchen looked different.  I could not figure it out the whole time I was there and then finally on my way out I did.  Chris had been hanging the kids art work up all over the kitchen cabinets.  There were hearts and rainbows, stick people and scribbles with Nettie and Chris careful handwritten in the corners.  I marveled at this; I always wanted to be the mom who hung up her kids' work but to be honest after working all day, doing dinner and laundry and everything else, getting out the tape and taping down the corners of their stuff seemed like too much work.  (Insert Mom guilt here)  I idea that after working all day, taking care of the kids, getting my stuff together to bring to the hospital, doing laundry, cleaning up and worrying and staying up to date on Lil he would take the time to do that just simply amazed me, made me fall in love with him all over again and reminded me of what a wonderful dad he is. 
This is the memory I am holding onto as I go to work tonight for the first time in a year.  I want to be home with my family and my sick baby but knowing that Chris is here with them and knowing what he is capable of will keep me from crying all the way there and back. 

Short Love Poem

Short Love Poem
By Judith Viorst

It’s hard to love

The tallest girl

When you’re the shortest guy

For every time

You try to look

Your true love in the eye

You see

Her bellybutton

 

Chris and I are feeling a little like we are looking into the bellybutton of life right now and it is very overwhelming.  This year has been difficult but one thing we have not had to worry much about is money thanks to the generosity of the employees in the Brandywine School District.  Now we are looking at making some very difficult decisions.  I will receive my last pay check in a week and we are on our own.  Due to more help from very good friends, I now have a part time job.  It has been years since I have worked in a restaurant and if I am honest with myself, I have missed it.  I love teaching.  Teaching is my heart and soul but I do truly love waitressing and bartending also.  They seem like opposite ends of the spectrum but they are not as far apart as you might think.  So back behind the bar I go. 

 

I am terrified of being away from the baby even if it is only a few nights a week.  I am terrified of making the decisions I know we have to make.  Sitting with a baby while she gags and throws up for two hours a night takes a mother's love. But as I have said, this is our life now and we have to live it.  Chris and I know how blessed we are.  We have so much for which to be thankful but Lil's needs are wearing on us.  She is so wonderful and happy and that sometimes makes it worse.  I mean, she thinks this is just life.  That it is normal to throw up nine times before bed or to have boo boos all over your body.  We know better. 

 

LillyAnna's blood work is almost all in the normal range.  Her platelets are high but Dr R assures me that he is sees no reason for concern at this time because her other inflammatory markers are within the normal range.  In some ways it was easier when what I was seeing with her clinically matched what we were seeing in her blood work. 

 

We had a lot of fun at a party the other night but the mosquitoes had the feast on most of us.  We are not sure if Lil has some hard core mosquito bites or if they are something else.  I am one of the lucky ones whose blood is not tasty to them apparently but boy do they love Chris.  He says he has had bites that resemble these but they should be clearing up and they are not.  We are keeping a close eye on them now.  Although her other lesions have looked very good since the steroids she was taking for her croup, the past couple of days we are seeing some pustules and she is saying they hurt.  How much do you believe a two year old when they tell you something hurts?  I do not know.  But I do know that she knows when she is going to throw up and when she is done.  And she is almost always right.  When she says her boo boos hurt, I think she is telling the truth but who knows.  And what can I do about it?  Advil has the potential to make her stomach worse.  Anything hard core just messes with her stomach more.  And even though she says they hurt when we touch them she is generally so happy....that is such a blessing but it sure confuses the hell out of us.  Her vomiting is just simply out of control.  There is really no pattern at all anymore.  She vomits all day.  Sometimes it is only a little bit and she just swallows it back down (gross) and other times there are just huge amounts that come shooting out of her mouth.   She chokes and gags and seems so uncomfortable.  Of course, like most two year olds she has to give us a run down afterwards.  "I frow up. I frow up." until we acknowledge her "yes lil, you throw up."

 

And it is all just getting to us.  We are down in it right now.  We love this kid so much and she makes us all so happy.  The twins are just infatuated with her and are so good to her. She feels the same way about them.  We are coming up on our one year anniversary of Lil's disease and life is going on. 

 

The Mysteries of Harris Burdick

So any and all patterns I was seeing with the activity of Lil's disease and Humira is gone.  Her lesions act up whenever they feel like it and she is vomiting constantly.  And by constantly I mean she is vomiting morning, noon and night.  Once again I had what I consider (and so does Dr. R)reassurance that her vomiting is related to her disease and not to medications or some other outside factor.  For seven full days last week I saw her eat three bites of food, not three bites a day, three bites total and she was still vomiting every day.  The fact that she continued to drink kept us out of the hospital. On Saturday night she decided to start eating again.  She ate all different kinds of food and did not throw up that night.  I thought we had turned a corner.  The next day she continued to eat but also continued to vomit.  Last night ( on the advice of a good friend) we taught her how to throw up in a bin.  She was so good about it.  She felt it coming, pointed to her mouth and said throw up and then pointed to the bin.  She held the bin in her little hands until it finally came up and would not let me put the bin down until she was done.  This happened three times.  She was so proud that she got it all in the bin.  I was so sad that this is what I am teaching my almost two year old. 

It concerns me that she pulls on her arms and legs (near her joints) and says owie.  Dr. R does not think she has any inflammation there because there is no evidence of it.  Also, her blood work does not show signs of inflammation.  Other than all of that she has been very happy the past two weeks and her lesions look awesome.  I mean really awesome.  I have not seen a pustule or papule since we started the steroids for the croupe.  Unfortunately Sunday I saw two papules and last night I found a putstule.  The papules are on the back of her leg and seem to be painful.  When we touch them, even if she is distracted, she reacts.  She woke up miserable after her nap yesterday and has continued to be pretty miserable.  Temps are elevated slightly.  Before bed her temp was 100.8 but I did not want to give her Advil because I was afraid it would upset her stomach even more.  Not that it mattered last night. 

 

Finding Nemo

Recently someone I love found out their unborn baby has Down Syndrome.  She is young, has no other children and is surrounded by family who love her including parents who would do anything for her.  However, her doctors told her she had to option to terminate her pregnancy.  She told me that she did not feel like she had anyone who understood her situation.  Her friends either did not have children or had new born "perfect" babies.  She felt I understood better and could give her some advice.  We talked a lot about her life and what it would be like no matter what she decided.  But there was one message I wanted her to understand more than anything.  I told her that the only opinion that matters is hers and her husbands... maybe even only hers (even though he is one of the most amazing men I know).  I told her that at the end of the day when the work is done and she is exhausted, when the baby grows older and so does she, it will come down to two people, her and that baby. 

 

As I said, her parents are amazing and so is her brother.  So many people were already offering their help and support.  We talked about how wonderful that is and I believe everyone means what they say.  But I also told her that it fades.  Life goes on.  When you have a chronically ill child, people will do extraordinary things; plan benefits, donate money, deliver dinners to your door for 9 months, listen until their ears fall off, visit the hospital, pray... the list goes on and on.  However, at some point having a sick kid becomes life.  You stop living like you are in crisis and start living.  Medical supplies pile up in your closet like old shoes.  The people at the hospital know you and your kids by name (and some even know how you like your coffee).  Even more than that, doctors and nurses you have never met before say things like "oh, YOU are LillyAnna!"  Instead of playing house, your kids play sick babies and instead of pretending to put them to sleep they pretend their dolls just threw up five times.  At some point it ceases to seem odd that the valet drivers at the hospital know your name and car.  At some point, you don't even flinch then you hear your baby retching in the back seat.  You just calmly pull over and clean it up.  And at some point it all just becomes part of your routine.  People around you sense this and start to calm down too.  As it should be, eventually people will actually talk about themselves instead of only asking about the baby.  Eventually your life is your life and you live it.

But does that make it any less difficult?  Maybe a little but only a little.  And the part that gets easier is that you are not in crisis constantly.  It never gets easier to take care of a sick child.  It just simply wears you down.  And then it gets lonely.  I am only at the beginning of this journey compared to some people I know and already I can feel it happening.  I walked into our support group meeting the other night feeling very alone.  When it was my turn I talked about how it seems as if people are taking Lil's illness less seriously now that it is not so obvious.  Her lesions were so gruesome and terrible.  It was so in your face but now the lesions themselves look better but she is still suffering.  Granted, she is not suffering as much but now she is suffering and we can't tell why.  The medications she is on are scary; the side effects are serious.  She is not gaining weight and has not eaten in a week (except a few bites of pasta, a donut and maybe a few chocolate chips) and what she has eaten she throws up.  She is drinking so that is good and that is what is keeping us out of the hospital. 

I shall call her Priscilla and she shall be mine.

And life is happening.  Chris and I had to get a new car.  I made the plunge into the world of so called soccer moms and bought a minivan.  With our financial situation being what it is the van is old.  Don't get me wrong, I love it but it is old and has a lot of miles.  We bought it Monday and it has had to go in the shop twice this week which is a lot of running around and as moms know, your car almost becomes like your purse when you have little kids so it was a big disruption.  My father in law is having some health issues and his attitude is less than mature and helpful to say the least.  My husband who is usually my rock and is very close to his father is beside himself.  I had two cakes to do yesterday and did not even have the fun of decorating them well which is my joy these days (if you have not heard, I am in the cake business).  I took my mother in law to get some testing done at Temple which took all day but I was happy to do.  Antoinette, our four year old, is having gastro-intestinal issues and we are working on that.  She has constant abdominal pain and her weight gain is just barely sufficient.  They want to be more aggressive finding her diagnosis because she is LillyAnna's sister (has anyone read My Sister's Keeper?) Her twin brother, being the oldest and a caretaker, is beside himself with worry.  In a four year old that presents as less than desirable behavior and my heart is just breaking for him.  He told me he has two sisters to worry about now.  I told him that is our job.  You can imagine how much that helps.  The therapist at the hospital says time and attention from me will help and I know that is true.  Oh and I have to make a decision about taking a part time waitress job by the end of the weekend.  I loved working in restaurants but it just feels like the lid on the coffin of the life I used to live.  I know that is dramatic but I am in a dramatic mood.

After all of this the past two days, I came home and cleaned up the vomit from the middle of the night last night which by this point was dried and stuck to the crib, walls and rug.  (Don't think me disgusting, I just did not have time! and she did not sleep in it).  I put the twins to bed.  Then I soothed LillyAnna while she wretched and spit and waited to throw up for twenty minutes and cleaned up the vomit that finally came, then put her to sleep.  For the third night this week I ate dinner at ten pm. 

I am not trying to feel sorry for myself and (please believe me) this is not a call to arms.  Everyone we know and some people we do not know have done so much for us.  It is time for us to begin living our new life.  It is scary to not know what that life looks like but that is life. You just keep on swimming and that is exactly what I plan to do.