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. 

Oh The Places You'll Go

Face is thinning out, more sure on her feet. Words sound like words, makes her wishes known. Tries to comfort people when they are sad, hates the high chair. In the last week so many little things have happened that make it very apparent LillyAnna is growing up. She is my last baby. The part of my life where I get pregnant and have babies is over. There are not many other times when the line between then and now is so definitive. But this one is. Tonight as I rocked her to sleep ( got puked on and then rocked her again), she played with my hair and sat staring at me. A ran my hand down her arms and legs and felt the last of her baby softness and smelled her sweet baby hair. There is still time I know but I also know how fast kids change and how easy it is to forget things you once thought were a part if your memory forever. Like how it feels when your baby breastfeeds and what it is like to hold your infant on your chest.
It is hard work to take care of LillyAnna. But in some strange way, she manages to make me happy every single day in a way that is different than any other happiness. No.... She is not my "favorite". Contrary to popular opinion I do not have a favorite. Well, that is not exactly true. I do have a favorite. Each minute if each day the favorite changes and they all get their turn.

I have no idea what she is trying to tell me in this video but she is very serious about something on her foot!

The Many Troubles of Andy Russell

Well, the mystery of the last few days has been solved. Monday I took Lil to the doctor to get her ears checked. I knew something was wrong but just could not figure out what so when her ears were clear, I was a little downhearted (pathetic I know). Then last night she woke up around 1 am and could not breath. She was retracting slightly and was very upset. I slept with her on my chest the rest of the night because I was so shaken by it. She has no other cold symptoms but when I took her back to the doctor today, we found out she has croupe. It is a mild case ( we caught it early) but my girls on 3F are well aware of how horrible it was when she had it last summer. For some reason, when her disease is bad she has trouble breathing. Right now her lesions do not look that bad. They actually look good but sometimes that is the quiet before the storm. She looks quite pale to me but she also sits in the bath next to today's version of Annette Funicello with skin that looks sun kissed even in the dead of winter. However, I also put her next to Chris and she still looked pale to me. Now when she threw up this evening and got all worked up, her cheeks got flushed. Dr R used to love to tell me that there have to be red bloods cells to get red cheeks! I guess that is true (wry smile) but I wish there were enough to give the rest of her a little color too.

In true LillyAnna style, she is not down and out. She is a bit fussy but still had the energy to play at the park this afternoon. Of course, this adds to my worry that the Humira is losing its effectiveness but only time will tell that for now because AI is still working on the technicalities involved in doing a collection for a test this new. She still has that awful cut on her arm that she got last Friday. The doctor she saw today did not like how it looked any more than the doctor who saw it Monday but we have to give the high test version of Neosporin time to work. In the meantime we have an excuse to put our AC on full blast and we are just hoping the steroids do their job.

 

 

 

Are You My Mother?

 

 This post comes with a disclaimer that my father is the best friend I have ever had, the most important man in my life (next to my husband) and the most amazing father.

My sister and I

It is no secret that my mother and I did not get along.  By the time she died of a drug over dose four years ago, we were barely talking.  I do not remember when our problems started but I know that there were so many things she did that hurt me.  My aunt, her sister, told me once that she thinks my mother was just trying to get my attention and that is why she said so many horrible things to me.  It is true that one day when I was in college I had had enough.  I completely stopped talking to her.  Stopped receiving her phone calls, stopped going to see her, basically stopped acknowledging her existence.  That was when the letters began.  She wrote me page after page, so many pages.  Some told me she loved me, others told me she hated me and everything in between.  She did not have an easy life but although I am prone to saying things in this blog that I have trouble saying to my best friends, the things that happened to her when she was a child were so horrible, I cannot in good conscience repeat them even here. And so, it is hard to blame her although with her intelligence and her heart, it is hard not to be angry that she could not overcome what happened to her and live a decent life.

A friend of mine who thinks way too highly of me once asked how I got to be so amazing.  After laughing hysterically (me? amazing?) I answered that it was because of my mother.  She taught me everything.  I clearly remember being about four years old and going to a convenience store with her.  She loved to stop at convenience stores but I completely forget what she bought, although my guess would be coffee and gum.  When we got back in the car we were cheerfully chatting away (I was probably chatting and she was probably listening) when I began to chew on a tootsie roll.  She slammed on the brakes (driving skills are something I inherited from her) and whipped her head around shouting, "Where did you get that?!"  Something else you need to know about me is that I was spoiled rotten.  I was the first grandchild of two large, very close families and being doted upon was an art at which I excelled.  Bottom line: if I had asked for something in the store she would have bought it for me.  I innocently told her that I had taken it from the store.  She made me spit it out in my hand, turned the car around and brought me back to the store where she made me show the cashier a chewed up mess and apologize.  She did all of this calmly and with a lesson about stealing clearly in her mind.  She took the sobbing mess that was me onto the street and talked to me about why what I did was wrong, then took me back into the store and bought me a treat.  To this day, I cannot go without checking my receipt when I see that 12 pack of soda or whatever that may have possibly gotten forgotten at the bottom of the grocery cart and not paid for... and yes, I always go back in and pay for it. 

She taught me the importance of laughing at yourself.  While in the car getting ready to drop me off at my grandmother's while she went to work, she started cracking up.  I was pretty young, it had to be before I started school because she was a teacher and if I was in school I would have been going there with her.  But she started laughing hysterically and when I asked what was so funny, she told me she felt a funny breeze and realized she had forgotten to put on underwear.  This was way before any drugs.  This was a busy mom who was taking care of a house, a husband and although I do not remember the exact timing, I am sure she was in school because she was always in school working on some kind of higher education degree. 

My mother taught me how to be kind and truly empathetic, she taught me the importance of family, she taught me the magic of Christmas.  She taught me how to love, how to teach and how to educate myself.  After she got sick, she taught me how to pick up the pieces of a shattered life as that is what I had to do when the rug was dramatically yanked from underneath me.  She taught me how to make my own decisions and be strong.  Some of these lessons came from her example and some from her mistakes.  But now that I look back they all came in some shape or form and in part from her. 

This Mother's Day I had to buy seven gifts for the "mothers" in my life.  All of these women love my children albeit in different ways, they all love me.  They teach me things that my mother did not get a chance to: when to call the pediatrician, when to fight with my husband and when to let it go, how to be respectful of my marriage, how to clean up vomit, how to get out stains and how to enjoy Mojitos on the beach.  They babysit.  They work through the never ending questions surrounding raising kids.  They take my kids for sleepovers and they like it.  They encourage me and they understand when my house is a mess or I did not have time to wrap their gift.  Not one of them is my mother and they never will be.  My mother deserves a place of honor in my life.  She earned it.  But they are amazing women and I would not be who I am without them. 

LillyAnna still had a reaction to the Humira although it was not as bad.  We gave her a big dose of benadryl and a dose of tylenol an hour before her injection.  We continued to give her doses of benadryl and tylenol every four hours after for the rest of the day.  The spot was still swollen and red but not as bad as the last couple of times.  She vomited almost every night we were away and she has been very fussy.  It took me four hours to get her to bed last night.  This is very unusual for her.  I am going to get her checked for an ear infection just in case.  She could be cutting a tooth.  I don't know but her behaviors are not following the norm.  At this point I am not even sure there is a norm.  Hopefully this week Dr. R and the doc from Cincinnati will connect.  This Friday when Lil gets her blood work I am hoping the planets will align and we will be able to get the Humira antibodies test.  I am also following up with Senator Carper's office. 

There is one thing I left out of my last post.  LillyAnna only gained .1 ounce since our last appointment which I think was over a month ago.  I asked Dr. R if this concerned him and he said if she drops below the fiftieth percentile, it will but for now she is ok.  She is just above that now.  As in the hospital when we gave her that first bath, her lesions looked awesome after being in the pool all week.  There were only a few pustules one of which broke open and bled but just a little. 

                                                                     

                                                               

These two pics are for all of you non-believers who say Lil does not look like me!

I Am Running In A Circle

In order to attempt to prevent a reaction to Humira this week, we have premedicted LillyAnna with Benadryl and Tylenol. Dr. R told me to give her a dose of each every four hours after the shot. We will see how it goes. Her blood work looked ok this week. Sed rate was up from 8 to 9 but still in the normal range. White blood cell count is down from 9.3 to 8 and CRP is the same at <0.5. I have stopped seeing a clear pattern in her symptoms which Dr R and I agree could be from building up antibodies to the Humira but could also be her body adjusting to Methotrexate.

Dr R consulted with rheumatology on Tuesday about a test that determines if antibodies to Humira are present. They told him one did not exist. He went looking himself just to gather information and found a test. How did this happen? It was approved that day! We should play the lottery! First a disease that is rarer than rare and now this! Lol!

As soon as they can figure out the logistics we are going to test her. It is only a blood test, she gets blood draws each week so this will not be a problem for her. Dr R and I also talked about the fact that her blood work does not really correlate with her symptoms which is very perplexing. He mentioned that he is glad we are going to Cincinnati because if she is building antibodies to Humira, he would like some other opinions on where to go next. Enbrel is the only other drug in this category and he does not think it would be a good option. We did not get to talk about why.  One thing I did notice this week is that she was fussy and temps were elevated before her lesions started acting up.  She did not eat for two days either and was up at night.  She has been pulling at her lesions and crying saying they hurt.  She has been limping a little and falling over.  Hopefully now that she got the Humira she will start to feel better. 

Seeing him and touching base with him did wonders for me. We talked a lot about my options for being able to work next year,  my daily life with her and what is happening with her disease. We also discussed Nettie and her stomach issues. Nettie is going to see a GI doctor. After that, we will try to see if there is a connection between the girls and their stomach issues. Lil was supposed to get her shot Friday but we had issues with the pharmacy (not our local pharmacy, our local pharmacy is amazing) so she did not get it until this morning (Sunday). Last night was vomit city. Not much fun when you are on vacation! Luckily we have loving and understanding family who is willing to work through this time of our lives with us.

We are now in Cape Hatteras for vacation. Even with two four year olds and Lil our trip down was wonderful. The kids were great, no one threw up and we stopped for a nice dinner. After the hell of getting the Humira taken care of Friday, the drive was a welcome retreat. Unfortunately, when we got in and settled I attempted to put Lil to bed. Silly me, thinking I could go a day without puke! She vomited three times. And in my relaxed state, I was not prepared. Therefore I got hosed (think The Excorcist), literally. We both ended up getting a shower at midnight.

I am still waiting for Dr. R and the doctor from Cincinnati to connect.  They are both very busy and have been calling each other every day this week.  Once that happens, we can move forward.  Senator Carper's office has been phenomenal.  I sent my letter in an email format and paper.  Someone got back to me the next day and we are moving forward with that also. 

Things are moving forward and I feel good about that but my stress level is through the roof.  It is good because it is keeping me energized and I am not eating too much! LOL!  Nothing is easy.  Everything is taking ten thousand phone calls, I fill out paperwork and have to fill it out again.  It is times like this I am so overly grateful for the help we have been given and continue to get.  It comes in so many shapes and sizes, it comes from unexpected places and people and it warms my heart every day. 

Lil's first ice cream cone... she loved it!



 

Have you ever been to Trader Joe's around 4 PM?  It is a mad house.  Always.  Today I went with Lil and as we were walking through a man stopped me.  He was obviously a priest although I expect that his working days are long over.  He was a little dirty and a little confused.  He came over to LillyAnna and I passing by other babies and gads of people trying to get around with their over stuffed carts and commented on how beautiful she is while giving her a blessing.  He was so sweet.  I do not attend church any longer although I was raised Catholic.  But every time I see a priest I ask him to bless that baby and I come very close to crying.  I don't know why.  I ended up telling him our story.  He asked me to contact him and keep him informed of her progress.  This sort of thing happens to us all of the time now and I am always struck by the compassion complete strangers are capable of.  She is a special baby. 

Things are moving along with the Children's Hospital of Cincinnati.  A diagnostician there contacted me and we spoke about LillyAnna's case at length.  He is trying to get in touch with Dr. R.  Apparently they have been playing phone tag all week.  He will tell us which specialists we need to see and the 'complex scheduling coordinator' will make our appointments.  This will not be easy as we will probably be seeing at least three and up to five specialists. 

I have also written a letter to Senator Carper and his office got back to me the next day.  They are going to follow up with our case and give it a Congressional ____.  I have no idea what goes in that blank to be completely honest.  He emailed me the same day and I will be following up with him tomorrow. 

You will be glad to hear that I achieved all of the goals I set for myself in my last post as I have exercised 4 times since then. 

And then there is LillyAnna who is throwing me through a loop once again.  Every time I think I find a pattern in her symptoms something changes.  Every tenth day after the Humira has turned into the seventh day then she seems to get better and then worse again.  Her temps are still running around 99.8 in the am and 100.7 before bed.  The past couple of days she has not really eaten and today she did not drink much.  She was up three times in the middle of the night last night and has been fussy.  Once again the list runs through my mind... teething? normal baby stuff? fighting off a cold? horrible disease wreaking havoc?  Who knows...