Sun Up, Sun Down

With LillyAnna you never know what is coming next.  It is like riding a roller coaster while wearing a blindfold.  I hate roller coasters, always have.  LillyAnna will be perfectly fine, temp of 98.6 and then within 2 hours her temp will go up to 104.5 and everywhere in between.  Her lips become ulcerated and start bleeding.  Only for all of this to calm back down again within the next couple of hours.  The lip sores are always there, they just get worse and open up and then get a little better.  It is the same with the sore in her mouth (the pustule we were concerned about when she was hospitalized after New Year's Day), it will become ulcerated, red and swollen and then calm down.  Due to all of this, she is not eating and drinking consistently and is in a lot of pain but it is all very inconsistent.  She is sticking to her stand off with the medications.  She will not even take anything for her pain.  I can put the Meloxican in her bottle; this is a long acting pain med that acts like Advil but is kinder to her stomach and helps with arthritis.  This is only helpful when she drinks the whole bottle which does not always happen especially when her mouth really hurts.  She has also started vomiting again.  We have an appointment with the behavioral psychologist on Tuesday. 

It is very hard to see in this pic but the lesion is right behind the front teeth.  You can see the dark spot.  It hurt very much for her to open her mouth so this was the best picture I could get.  You can also see the sores on her lip.

I was also very concerned about this spot on her lip near my thumb.  It was actually filled with pus and surrounded by red, sore tissue which is what happens right before a lesion opens.  It did not open.  However, although her lips get very sore and ulcerated, I have never seen this on her lips before.  This cleared up after about 6 hours. 

The scariest thing that happened so far is at one point the pustule on the roof of her mouth completely opened up into a full blown lesion.  I could not get a picture of it, it was just too painful for her to open her mouth.  In the hospital we (the doctors and I) thought we saw two other lesions on the insides of her cheeks.  Because this is so rare, PG is rare but PG in the mouth is so rare I could only find 3 pictures of it, we were questioning what was a lesion and what was not.  It turns out those two spots on the insides of her cheeks were lesions because when the one on the roof of her mouth ulcerated so did those two spots.  They developed black spots in them and opened up slightly in the middle.  For my fellow PG sufferers, you know that once a spot opens, it is much more likely to open again.  And so, the spot on the roof of her mouth has been sore and surrounded by puss since then. 

These pustules showed up the morning of the ear infection/ ear draining.

Then yesterday the bomb dropped.  It was not a huge bomb... maybe just a firecracker. I came home from work and about an hour later found that Lil's left ear was draining, she was complaining about her right ear hurting and her nose was once again running like a faucet which caused her face to look almost as bad as it did when we were admitted to the hospital.  So today we will be going to the pediatrician.  The trick will be getting her to take the meds and then keep them down.  That is the only thing that will keep us out of the hospital.  Dr. R and I did talk about doing a round of steroids... in his words "suck it up and give her a round of steroids" (love him).  We save this as a last resort.  I have put this out to the NIH and am waiting to hear back from them.

If you look closely you can see the redness on her face. 

It has just been constant worrying about her, for all of us.  We are all on watch.  Little Chris got into the car the other day from the bus stop, looked at her smiling and said to me, "well someone is feeling better!"  It just made me realize once more how the twins look for her ups and downs just as much as we do.  They run and get her a tissue when her nose starts to run or offer to grab the thermometer.  I do not even think about it as our daily lives go on but when your just turned 6 year old asks what medicines your 3 year old took or runs to grab her a bin because even they know the signs of her upcoming vomit, most of the time it is just normal life.  But every once in awhile it hits you like a slap in the face how abnormal it really is.   I try to shield them from it but it is who we are as a family.  They have been talking about it more and more which is good but so hard to hear.  Nettie said she wished Lil did not come out of my belly because then maybe she would not be sick.  Then she quickly said she still wanted her to be her sister.  Then quickly said she still wanted me to be her mom... You could clearly see how she was struggling to find words for her feelings.  Finally she landed on, "Mom, I just wish Lil was not so sick."  I told her we would not be who we are as a family if Lil was not sick, this is our journey.  I know she does not understand that now but I want that to resonate with her and someday she will.

To top off all of this loveliness, the icy roads got the best of me yesterday.  Driving through my neighborhood, I could not stop and neither could the other car and he hit me.  We were both being very cautious, going very slow, so it was not serious and everyone is ok.  Thank God the kids were not with me.  But it is one more thing to deal with.  I told a very good friend of mine I feel like I have a black cloud attached to my back. She replied with one of the best things I have heard in a long time: yes but most people mistake it for a cape and you wear it well.  I love that.  I have big girl boots and now a cape.  All I need to complete the set is a Super Hero name.