Love, Life and LillyAnna: Are You My Mother?

Sunday, May 12, 2013

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!

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History

On June 19, 2012 we found a small pustule on our
daughter LillyAnna’s thigh. At the time,
she was nine months old. Until this time, she was a healthy baby who ate well and gained weight appropriately. She was also the happiest baby I have ever seen. Even though she was breastfed, she began sleeping through the night at six weeks and almost never cried. She was an absolute dream come true! Within a week there was a lesion about three inches in diameter that went down to her muscle. It was extremely painful. Later we were told that the pain was much worse than that of a burn but she still almost never cried. As per our regular pediatrician, we were treating her for MRSA. We were told to take her to the
Emergency Department if she developed a fever.
Ten days after the initial pustule, she developed a fever and we were admitted to the hospital. It took 24 hours to diagnose her condition as Pyoderma Gangrenosum. Those initial days were the scariest days of my life. Pyoderma Gangrenosum is
associated with adults who suffer from Crohn’s disease, rheumatoid arthritis and a few other auto-inflammatory diseases.
However, LillyAnna’s is only the 17th reported case in
infants in the world. Most of these infants responded to oral steroids and then are sometimes followed up with another maintenance medication successfully. These other infants were not followed past two years although we did find one who was followed for five years with no recurrences. LillyAnna does not follow that same
path. During the first week in the hospital, she developed another large lesion on the side of her abdomen and a few other small ones on her limbs. In total, she had 30 lesions during the first 2 months of her disease. We were forced to insert a PICC line. The PICC
line was necessary because she was refusing to drink or eat and she was on IV steroids. We also had a lot of trouble
keeping an IV line secure. Every time there was trauma to her skin, she developed a new lesion therefore we could not
use the standard methods for keeping an IV or PICC secure. We could not use any tape or even band-aids. Every time there was trauma to her skin it turned into a lesion. The
lesions were growing out of control and they grew very quickly. Watching our baby’s skin deteriorate so quickly was one of the most terrifying things I have ever experienced.
It was so difficult to control her pain. Because LillyAnna
was always a happy and vivacious baby who almost never cried or fussed, it was difficult to tell when she was in pain.
Even with all of this going on, she was pleasant as long as we controlled her pain. It was evident that she was in
constant pain even with morphine every four hours and oxycodone for breakthrough pain. It was difficult to
hold her and sooth her because she had so many lesions.
Finally the growth started to slow and we were sent home from the hospital about a week after our first admission with a PICC line and oral steroids. Unfortunately, in the thirty six hours we
were home, LillyAnna developed six new lesions that were about the size of a quarter on her limbs. We were readmitted
to the hospital where we stayed for the next two months. LillyAnna celebrated her first birthday in a
hospital conference room. It was
actually awesome. The hospital helped us
organize it and it was a blast. We immediately began using IV steroids again and added some other medications that
are meant to lower the immune system in an attempt to stop the remarkably fast growth of the lesions. In our first week
back, she had developed lesions on her face, scalp, and diaper area and most painfully at the PICC insertion site.
Every other day we had to change her dressings which took
sometimes over an hour. These procedures were extremely painful for her although the hospital did a wonderful job of
trying to make her more comfortable by premedicating her, using very special bandages and trying to distract her as much as possible. Although, even with all of that, it was
horrible for her and she would scream the entire time. In total she had about thirty lesions. This is a time in my life that I have to block out of my memory. No mother can hold down her screaming infant while doctors and nurses peel bandages off of her totally exposed muscle and be a whole person again. Finally we tried a treatment called Remicade. While
receiving this treatment, we were able to begin weaning her from the steroids and by the time we left the hospital she no longer needed the PICC line and was taking all of her medications orally.
Her eating and drinking were not totally were they needed to be but she was improving. It was during this admission that the vomiting began. I started to notice that the days when LillyAnna’s lesions were particularly sore, she would vomit before bed.
We were discharged from the hospital on Remicade treatments
and a plethora of other oral medications in late August of 2012. I was unable to work as her care took up the
majority of our day and we were at the hospital two or three times a week sometimes for a whole day.
Soon, I began to notice that LillyAnna was having some of
the reactions to the Remicade that we had been warned may happen when a child has an adverse reaction the first couple of infusions. She would get extremely fussy, had rashes on
her face and trunk, and was very flushed.When we went home, she seemed ok. However, we were supposed to be lengthening the time between Remicade infusions and we could not. Her symptoms would begin to worsen after two weeks and we would have to infuse again instead of waiting longer. When we would wean the steroids, she was uncomfortable and the symptoms were just getting worse. She began vomiting each night and
not eating or drinking again, she was very fussy all of the time and her lesions looked red, sore and like they were growing larger instead of healing.

Finally we had to readmit her to the hospital in November of
2012. There we found out that she was
building antibodies to the Remicade; that is why it was losing its
effectiveness and we were seeing a resurgence of symptoms. She most likely will never be able to use Remicade again. At this time we were faced with many decisions and LillyAnna was taking her first steps. We needed to find out why she was refusing to
eat and drink because it was such a problem that she was dehydrated and losing weight. Along with the advice of her doctor, we decided to scope her entire
digestive tract. This is something we had avoided in the past because of the fear that we would cause lesions to develop on the inside by causing trauma.

However, at this point it was necessary. The scope did not show
us much. There were some parts of her intestines that the doctors could not reach because they were too small even though we were at a reputable children’s hospital. Other than that, they did not see much. There were small signs of what could be Crohn’s Disease but because she was already being treated with the medications that are used to treat Crohn’s, this was non-conclusive. What they saw could also be signs of a
virus. We also did a modified barium swallow study which again was not very helpful. It showed that she had reflux which we already knew and can be caused by some of the medications she is on and some slow stomach emptying. However, she is now on the highest dose of a medication to treat slow stomach emptying and it has not helped. This is one reason we are pursuing a second opinion with our doctor’s support.
Keeping her safe causes us a lot of anxiety; we cannot keep her in a bubble but it is terrifying to think of the
sicknesses she could contract. We work hard to keep the house extra clean which is not easy because LillyAnna shares this space with her twin siblings. We keep hand sanitizer around and remind all visitors to use it often. This also means that she could not
go to daycare or school which had been a problem for us but she has since started Kindergarten. She just stays home when it is a bad day. I had to resign from my full time teaching job. There are so many expenses in a situation
like ours. They are things that Medicaid does not cover, things that you might not even think about. For example, sometimes I have to take LillyAnna’s temperature twice a day.
To keep that sanitary, we need alcohol wipes and Vaseline. The expense for over the counter medications adds up also. We have narcotics for when her pain is very bad but we always use Advil first. She gets a lot of Advil. Other seemingly innocuous stuff are things like the extra laundry detergent we need to properly clean her clothes, sheets, and pads after she vomits and the hot water.
Or the extra cleaning supplies we use to make sure the house is as germ free as possible. These are just a few examples of things that can quickly add up. LillyAnna is being followed by the National Institute of Health and even at that world renowned facility
she is considered extraordinary. There is only one case they have seen in an adult (which is only remotely related to her disease) that even comes close to resembling her disease. LillyAnna has been suffering day in and day out for years with this disease.I worked part time for awhile but now work full time with the help of an amazing Nanny. We are doing the
best we can but the strain of years of this is starting to wear on us. LillyAnn is such a happy little girl. Most days if you met her you would not know anything is wrong with her. People are
always saying, “But she looks so good!” The doctors have told us that she does not know what it is like not to
be in pain because she has lived with pain so much of her life so unless the pain is just excruciating, she is going to act like everything is fine. It is heart-wrenching. And I know this to be true because when we get home she will just sit for hours or limp around the room or on a bad day lay in my lap and cry.

LillyAnna is an inspiration to me. She embraces life to the fullest even with the intense pain she lives in, not being able to go to school and very often feeling far more exhausted than any child should. She loves to go to the zoo and observe the slow movements of the animals, especially the reptiles! She really loves to be read to all snuggled up with me or her dad and her brother and sister. Coloring is one her favorites too when her fingers are not too swollen to grasp the crayon. And when she is eating chocolate and spaghetti are her favorite foods, she is even pretty good at helping me roll meatballs. We have no prognosis for
LillyAnna. We do not know what the future holds for her. We take every day and enjoy it to the fullest. We try to soak up her zest for life and just love her.

Love, Life and LillyAnna

Sunday, May 12, 2013

Are You My Mother?

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Down the Shore

LillyAnna in her Favorite Place