Quick Update 6

We saw Dr R today because of Lil's iron deficiency anemia and the new things I am seeing with her skin.  Her temperatures have continued to fluctuate throughout the day.  She is getting new pustules quickly, they get very red and swollen and then go away almost completely on their own in a matter of a day.  She continues to throw up each night usually more than once and usually a few times a day too.  The biggest problem today was that she has lost more weight.  She did grow in length and that is a good sign that she is getting enough nutrition but losing weight is an issue.  I have also been concerned about dehydration because I now have to limit her milk intake and that is all our stubborn little girl will drink.  I am also trying to get her off the bottle but after three days I had to give in on something and today she drank about 15 ounces of pediasure but she won and drank them from bottle.  If she continues to accept the pediasure (something she has refused to drink in the past) that will hopefully help with her nutrition and weight.  I am afraid once she realizes she is going to have her precious bottle available more often again she will get mad about the pediasure and begin her strike once again. 

Dr. R is going to get his assistant on the NIH since I am not allowed to contact them to find out what is going on and if I need to I have Senator Carper's office still willing to help.  We are going to keep a food diary for three days to see if she is even taking in enough food.  Dr R is wondering whether she is simply not taking enough in or if she is not absorbing the nutrients from the food that is making it to her stomach.  We are also going to get weights from her regular pediatrician and plot them on the growth chart from the hospital to help us determine how dramatic the weight loss really is based on her whole history. 

Dr R did not look happy today.  Her blood work did not look bad from what I could tell except that her sed rate is climbing up little by little.  We will just have to keep an eye on things for now and stay the course.

Little Miss Birthday

LillyAnna,
I am not sure how someone who cannot speak in full sentences is able to inspire me but you do. Today is your second birthday. We celebrated with a beautiful birthday party surrounded by the people who love you the most. Last year we were celebrating in the hospital.  I have had to make some drastic life changes. In this last year, your strength has inspired me to do and be things I have only ever hoped.                                                                                                          Last year you were pretty obsessed with Monsters Inc. It is funny, your brother and sister were pretty much not allowed to even see a TV until they were two but you had already had a favorite movie at one! Of course, you have extenuating circumstances. Throughout this year you have stayed in love with Mike, Sully and Boo but now that the year is ending you are also enjoying Elmo and Mickey. Actually, Mickey is in the lead right now! Which is good because we are supposed to be going to Disney as a treat from your grandparents later this year. I hope that goes through for your sake. You deserve to smile.

You also really enjoy singing the Batman song. For Halloween this year you picked out a pink batgirl costume. I feel like that sums you up pretty well. You are not afraid to love what you love and it is a mixed bag. You will sit and play dolls with your sister and then turn and play trucks with your brother. I will be in the kitchen baking and turn around in response to "Mom!" only to see you smiling up at me with play high heels on your feet (usually mismatched), a Batman cape on and a princess crown holding hair in a birds nest on top of your head and pushing a good amount down into your eyes grinning from ear to ear.

You do not eat very much but when you do it is all about chocolate.... chocolate, chicken (which you call eggy), cucumbers and macaroni and cheese. Unfortunately, you throw most of it up. You also love my buttercream icing. One of my favorite things is when you sit in your high chair (although you  boycotted the high hair about a week ago) and I give you spoonfuls of buttercream icing while I bake. You get so excited and happy each time I hand you the spoon and you take your time licking the icing with your eyes trained on Monsters Inc. You have even started potty training and just today you went the whole day in panties. You had three accidents but you are only just 2! When the doctor asked why I  was potty training you I told him you insisted and that is exactly what happens with you. You insisted on being potty trained. You insist on continuing to use a bottle.  You insisted on giving up the high chair. You insist on enjoying life.

 

We spend a lot of time together, you and I. For the past year I have been on a leave of absence from teaching to care for you and this summer I resigned my position with the school district. You need me and it is that simple. You cannot go to any kind of daycare because the medicines you are on weaken your immune system and you have not had your vaccinations since six months. But really your disease just keeps surprising us and there is no other case like yours that we can find. So you need me. In order to make things work I am bartending and baking. It has been a hard transition. 

It goes against everything I did with the twins but I rock you to sleep each night.  You know how to put yourself to sleep and have been able to since about 6 weeks but you throw up so much at night that it does not seem right to make you go through that alone.  We are home together all day and while the twins go to school a few hours a day, it is just you and I.  I also rock you to sleep at naptime.  If I go to the store, you go too.  If I am in the bathroom, you are there too.  I can't even take a shower without you opening and closing the door every two minutes.  If I am being completely honest, I don't mind at all.

Your brother and sister who are now only 4 years old take such good care of you.  Whenever they are not around we have roll call. "Where Bubby?" "Where NetNet?" Where DaDa?"  They worry about you so much.  With all of that worry and all of the attention you get, one would think that they would be jealous or angry with you.  I have never seen Nettie get aggressive with you, ever.  No matter how mad at you she gets.  Your brother gives you a smack with his gaga every once in a while but nothing major.  Today I caught him holding his ears when we went to get blood work.  I was wondering what he was doing until a few minutes after they stuck you he took his hands away and said, "Is she done crying? Is she ok? "  Your sister swears she knows how much you threw up each night because when she tries really hard she can see through the wall to check on you.  They make sure you are in your car seat correctly, give you their last piece of candy if you are crying, and always check that you have a space to sit. 
I am so sorry.  I can't fix this pain for you and I can't figure out how to help you.  I am the one who is here with you all of the time and we are so close.  When you are in pain I can tell and when you do not feel good I can tell.  It is all up to me to stand up for you and to make sure everyone knows what it is like to be you, what you are going through.  I don't think I do a very good job.  Doubting myself is just something I have always done.  I wish I could say I am one of those moms who is like a mother tiger and springs into action when her baby is in need; but at this I fail you.  I allow people to talk me out of what I know in my heart to be true.  Being over sympathetic to my kids has been a fault for the last four years.  I guess there are worst faults in a mother.  But with you I know when I am right and most times I am right.  You just play it off so well.  The distractions of the world invigorate you.  You steal energy from being around people and it fulfills you.  At night when we are alone and you are squirming in discomfort from who knows what pain or when you are asking  for your bin to throw up for the umpteenth time, I know I was right.  Your love of life and your strength is what gets me up each day.  It is what keeps me going when I feel like the world is collapsing on top of me.  Because of your illness I have changed my entire life and my own strength astounds me.  But it is all for you and because of you.  Your brother and sister deserve me too and their annual birthday letters will show their special connections to me but this is your letter.  This is your second birthday.  I am so afraid for your future but I am so enjoying your present.  Happy Birthday little one.  I love you. 
Mom