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...