Love, Life and LillyAnna: To Make You Feel My Love

Thursday, October 31, 2013

To Make You Feel My Love

At work on Friday night I was talking to two customers and found out that we both have experience being the parents of chronically ill children. The gentleman started telling me a story about a doctor who would visit a very poor village in the heart of Africa. I will not in anyway do this story justice but I am going to try... I cannot be held accountable for details gone awry! There was a family this doctor saw on his visits who had a young boy that was just not growing. Every time the doctor went to the village, the child was more and more weak. Finally, on one visit, the doctor told the family that he believed he had found the source of the child's illness and unfortunately the child would die. The family was distraught and asked if anything could be done. The doctor told them that the only way to save the boy was to go to the nearest hospital and have surgery. The nearest hospital was hundreds of miles away and the family had no car. After a few days the mother created a sling, put her son on her back, used her family's life savings and walked for three weeks to get to the hospital. Along the way she was robbed, had no where to sleep, nothing to eat. When she got there the hospital told her she had to have an appointment and that the next available one was in three months but when they found out what she did to get there, they did what needed to do, completed the surgery and the boy lived.

This story has been haunting me. The strength of a mother's love is just astounding. I am reading a book about a mother who finds out her one year old has Ty Sachs disease. This is a disease for which there is no cure, your baby is going to die and it is not going to be pretty. There is nothing you can do about it. She calls mothers who have to watch their children die Dragon Mothers. She says the strength they need to smile through their child's pain and comfort others when their soul is shattering is something only a dragon can do, a mythical creature known for its sheer power. I know some of these Dragon Mothers and I can tell you it is accurate.

Lately LillyAnna has been having a lot of pain in her feet and legs. It is, as always, so difficult with her because I do not know if this is new pain or she is just better able to describe it as her baby ramblings form themselves into real sentences and discernible words. The swelling we have been seeing in her hands and feet is also confusing because her body is changing so much. My baby is losing her baby chub which is normal. But hers is falling off at an alarming (at least alarming to me) rate as it is exacerbated by her lack of eating and constant vomiting. Yes, she still vomits multiple times a day. So when her hands look swollen it is hard to remember if they looks chubbier than the day before or not. However, some things have gotten more clear over the last week. I had to buy her crocks because her shoes will fit in the morning and then not fit later in the day, that is more substantial evidence. Yesterday was just awful. Everywhere I touched her she told me it hurt and she cried most of the day saying owie.

I had a wonderful moment with the Rheumatologist when I saw her two weeks ago. She showed me how to tell if Lil is swollen in her knees and ankles with her practiced eye. It is hard to tell because of the extensive scarring on her legs. She also showed me how LillyAnna manages her own pain by compensating with the way she walks and moves her body. She was astounded by how happy and active Lil was. Then she prescribed me pain medicine. I just started to cry. Finally someone saw what I was seeing. So often, I feel like I have to prove to people that this baby is in pain. She is just SO happy almost all of the time. But that is LillyAnna. She has a little baby dragon heart.

The Great And Powerful Dr. R (oh if only he could see that!!! Hahaha!) changed one of her stomach medications. Whenever we do that we see a small increase in her eating, unfortunately, it does not generally last very long. For now though it is nice to see her actually swallow bites of food even if it is only one or two. Although it is done nothing to slow down the vomiting. In fact, the other night, after she threw up she said "eww Mom, chicken." I am a little worried that will be the end of roasted chicken! Dr. R also wants LillyAnna to have another scope since it has been a year and a CAT scan of her head.

Without Chris, I would not have the strength to do what I do every day. He literally keeps me going, he is my comfort at the end of every long and exhausting day. He is the one I know will always be at my side. Nine years ago today when I promised him the rest of my life I had no way of knowing what this life would look like. It is beautiful and horrible and he is there at every turn to hold me and to pick me up. The ways in which he supports me are not obvious but they are strong and they are real.

I do not mean to take away from those Dragon Mothers but we have all had our Dragon Mother moments. I do not need to list them. Sometimes I feel my strength falter and I feel oh so weak. I repeat my mantras "one foot in front of the other, Gina, just put one foot in front of the other" and Dory "just keep swimming" and, although I do not want to admit it Katy Perry's "Roar". I refuse to let this destroy me. I have to be strong, I have to find the good in it because LillyAnna, Chris and Nettie and even my husband need me to. I am a fighter. A champion. I will not bow down and let this thing that has happened take me down. I will be the phoenix who rises from the ashes and I will bring my family with me. We WILL make Lil's illness work for us. We WILL rise above the pain and the confusion. I WILL NOT let us fall.

"Make You Feel My Love"

When the rain is blowin' in your face
And the whole world is on your case
I could offer you a warm embrace
To make you feel my love.

When the evening shadows and the stars appear
And there is no one there to dry your tears
I could hold you for a million years
To make you feel my love.

I know you haven't made your mind up yet
But I would never do you wrong
I've known it from the moment that we met
No doubt in my mind where you belong.

I'd go hungry, I'd go black and blue
I'd go crawlin' down the avenue
No, there's nothin' that I wouldn't do
To make you feel my love.
The storms are raging on the rollin' sea
And on the highway of regrets
The winds of change are blowing wild and free
You ain't seen nothin' like me yet.

I could make you happy, make your dreams come true
There's nothing that I would not do
Go to the ends of the Earth for you
To make you feel my love.

2 comments:

AnonymousOctober 31, 2013 at 6:16 AM
Hoping for the best for lilly and all of you. You are a strong family. God bless you. Love you from Maryellenstrohm
ReplyDelete
Replies
AnonymousMay 7, 2024 at 10:24 AM
Hi mom. It’s me Bubby I’m 15 as you obviously know, me and Yahmir are going through the blog in biology class as freshman. I love you mom and Lilly and dad and Nettie.
ReplyDelete
Replies

Add comment

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

Thursday, October 31, 2013

To Make You Feel My Love

2 comments:

Down the Shore

LillyAnna in her Favorite Place