Love, Stargirl

It has been awhile... I know!  Our computer has been having so many problems and I am learning that getting your computer fixed is like getting your car fixed; if you do not know what you are talking about you get taken for a ride!  We have spent an obscene amount of money (ok maybe not obscene but a lot) trying to fix our computer only to find out that the problems were not being fixed at all.  Finally a very very kind friend offered to fix the computer for us and did it over one night.  We are going to try in vain to repay him and his family with food and baked goods:)



And now I have so much to share with you, it is hard to know where to start so for this morning I am going to update you on Lil and leave some of the deep stuff for a late night and a glass of wine.

I could not leave this out, it was too cute:)

Are you the type of person that like good news first or bad news first?  I have always been the type that likes to get the bad news out of the way and end on a good note so here it goes:

Lil is having a very difficult week.  She has not been feeling well and the very sad part is that it hardly even affects us anymore.  When people ask how she is I can say, it is her normal stuff and they know exactly what I mean.  I wonder at what point that will stop bothering me.  She has been in a lot of pain and as usual it is very difficult to figure out the source of her pain and with her demeanor it is hard to determine the extent of her pain.  We can usually distract her from it pretty easily but this week it has even been hard to do that.  She has developed some papules and pustules but nothing extreme.  The pustules did surprise me as she just had her doses of Humira and Methotrexate so this should have been a good time for her.  She tells us that her boo boos hurt and points to small cuts or papules that cannot possibly be that painful.  However from what I have been reading and discussing with the doctors, this is how toddlers are notoriously bad at describing their pain.  She has also been saying that her belly hurts but this is new.  With all of her vomiting and not eating, she has never said her belly hurt before.  This week she would actually grab her belly and scream that her belly was hurting.  After a week of sleepless nights for her and I (she was just too uncomfortable to sleep) I gave in and started giving her doses of oxycodone on top of her other pain meds at night and if I time it just right I can get it to settle in her stomach before the vomiting begins.  At least I think that is what is happening and I have my reasons for thinking that but they are too gruesome to share even here!  And then there are the mom instincts... it is in the eyes.  I can just see it in her eyes.  She does not look right.

Going to AI is like Christmas!

Her blood work confirms my gut feelings.  White Blood Cell count is slightly elevated, CRP is 1.6 which is decently high for her right now, Sed Rate is 8 which is not too bad but high for her at this time.  All of this shows us that something is going on and as usual we just do not know what.  I am most concerned that some of her other numbers are elevated and these are related to her liver.  They are higher than I have ever seen them (double than the top of the normal range).  Dr R says they are high but not high enough that he is concerned.  This is the rub for me. I feel like we fall into this grey area in the medical field where a typical pediatrician would have one opinion and a hospitalist (especially one like Dr R who we like to call House because his group sees some of the most rare and severe cases in the hospital) has a completely different perspective and with it a different opinion.  So as a mom in this grey area I am worried.

Hands red and swollen

But then we go to the mall and she carries the bags and eats ice cream and plays and well... there you have it.  We stay out of the hospital.  If we can control her pain at home and she stays hydrated we stay home.

Now good news.... and there are two things.

One: I have learned a lesson.  You will probably think I am slow but this whole thing has been a bit overwhelming and I am going to take the excuse that trauma has significantly slowed my learning curve!  Lucy's funeral was horrible and beautiful all at once.  It was the first funeral I have been to for a child.  Her mother honored her life, death, suffering and family so gorgeously.    And on a personal level it put some things in perspective for me.  One of those things is that I cannot let Lil's disease stop us from living life.  With LillyAnna that can be tough because if she does too much or pushes too hard she pays for it with pain.  Chris and I always have to make the impossible decision of guessing whether or not some activity is going to affect her (and believe me it is a GUESS) and how badly and whether or not it is worth it.  Impossible decisions.  One decision we made was to take her tubing.  All I could think was ' if she gets hurt Dr R is going to say... You did WHAT?' but we did it and she had sooo much fun!  Did she pay for it?  Yes.  But I would say this one was worth it.

Two: the other piece of good news is that we have been asked to present LillyAnna's case at AI DuPont Hospital for Children's Rare Disease Day on May 19th.  There are only four families being highlighted so I feel this is quite an honor and hopefully it will bring us some much needed recognition.  In honor of LillyAnna for this event we will be selling t-shirts and sweatshirts.  Our hopes are to continue to spread the word about Lil and her disease.  We will be ready to begin to sell hopefully by the end of next week.  I will keep you all updated and let you know how to purchase a t-shirt if you are interested.  We are so excited!!!! And thankful to our friends from AI for this wonderful opportunity!

Someone learned how to take their own medicine!