Absolutely Almost

It took the nurses and social workers at AI a few months of kind cajoling to get Chris and I to attend our first support group meeting.  I kept thinking , and telling them, that we did not belong there.  I knew that so many people who went to that group had kids who are in wheelchairs or were as medically complex as our beautiful friend Lucy.  But the more groups we attended the more I realized that we did belong there. I realized that Lil's pain, her medical issues and how it affects our family put us right in the mix.  Last night at our meeting, a wonderful new family to our group leaned over to me at the end and whispered, "I feel like maybe we don't belong here.  She is not as complex as kids like yours."  I started with a smile and proceeded to tell her why she too belongs here. 

I truly believe we, our little family, is here in this place for a reason. 

So how is Lil?  We are a little perplexed to be honest.  She is not coming out of this flare as quickly as we thought she would, as quickly as she has come out of flares before.  This is especially strange because we just increased her Methotrexate.  If you remember, the docs at the NIH noted that the Methotrexate had more of an effect than the Humira.  So has the methotrexate hit its plateau? 

The NIH also asked us to get more blood work in their concern for her kidney and liver numbers.  Those numbers were still elevated.  They are not very high but elevated and staying elevated.  My concern is that she is saying she has pain in her belly and side and those numbers are elevated. 

She is limping when she wakes up telling me she has pain in her legs and hips.  This usually works itself out in an hour or so but it should be controlled with the increase in the methotrexate.  In reading the Facebook page on Pyoderma Gangrenosum I am learning so much about the pain that comes along with this disease.  The adults that have the disease say that even loud noises and vibrations can cause the "PG" pain to act up.  Lil has been having these crazy temper tantrums, it takes almost nothing to set her off.  I am wondering if she is just walking the line of keeping herself under control between having some level of pain and because she is three that when she loses it, she really loses it.  Little Chris had some serious temper tantrums at three but Lil is putting him to shame.  She does not have them often but they come out of nowhere and they are major and then she falls right to sleep. 

The other piece of the puzzle is that she is out and out refusing, and I mean refusing to take her medications.  It started about two months ago and I remember we were in New York visiting my friend Alana.  I was fighting with Lil to take her meds and Alana asked why I thought she was fighting so hard. My response was that I think she is just tired of it all.  I mean think about how you feel after being sick for a week or two.  For over two years, every night she has taken 4-8 vials of oral medication some of which tastes terrible no matter how they flavor it.  There is nothing she eats consistently enough that I can put it in food.  There are still days she just simply does not eat.  I reached out to the docs, our wonderful nurse friends... We are spending 2 hours a night trying to convince her to take the meds only to have to sit on her and squeeze her already ulcerated lips and cheeks so I can get the syringe to the back of her cheek which leaves me and her crying.  The best part?  She throws it all up in the end.  So I have stopped.  Thursday night we had a breakthrough!  I filled a couple of syringes with Gatorade and gave them to the twins and they all took 'medicine' together.  She took 3 of 5 with no fussing.  I was all smiles.  Before bed, she threw up anyway.  I just CAN NOT WIN!  My only consolation is that maybe she would have been throwing up every night anyway. 

Overall she is not as bad as she was before the NIH but she is not 100%.  It is just so frustrating to see this continue to go on and on and on.  The twins know she is better than before but they also hear us fight with her every night, they lay in their beds in the dark and hear her throw up.  They watch her run around and cough and us grab a bin.  I am so thankful for their school though.  Chris flat out told me he feels very safe with his teachers.  Both of their teachers told me how the twins are able to talk about Lil in school.  This is so huge for Chris.  Nettie is much better at talking about her feelings. 

We also had a talk about how the Congressional Visit went while I was at the NIH.  Here is what I have learned.  Families with kids with rare chronic illnesses have to do crazy things to take care of their kids.  They sell their homes and buy smaller ones.  They get divorced and sometimes actually have to live apart for a time to prove it.  When we applied for SSI the social worker was so touched by our story she was in tears.  Very kindly she told us if Chris could figure out how to lose his job she could help us because he makes too much money.  Too much money is over $25,000 a year.  We are supposed to support a family of 5, one who is medically complex, on $25,000 a year?!?!  I am glad Congress wants to help but it is going to take some serious legislation to help and I am worried that there are just not enough of us to make a change.  Someone mentioned they heard that there was going to be a change in that we would be allowed to have a savings account for our medically complex kids that would not affect their Medicaid.  Wahoo!  Thanks a lot (insert sarcasm).  One of the new things I have been reading about on the PG Facebook page is adults having to get amputations.  Once again, I have no idea what the future holds for Lil. 

The reason Chris and I have been able to keep living the life we live is you.  I am not blowing smoke here.  I am being totally serious.  We have actually talked about having to sell the house and downsize.  Or move to an area where houses cost less.  I just cannot work as much when she is very sick.  Is this fair?  I don't know.  Should we have a donation page?  I don't know.  It is something Chris and I talk about all the time.  How we spend money, how careful we are is a constant conversation in our house. I do not know what is going to happen but I can tell you we are doing the best we can to be responsible and we appreciate you so much.  You have kept life stable and normal for our kids, you have given our kids the little things that make their lives better, healthier.  I see how the government helps other people.  Should they be helping us? The conversation we had last night with others in our position was wonderful.  All we can do is keep pushing. 

I love how she is just chillin' talking to her aunt in this picture!  Aunt CoCo is trying to convince her to take her meds and Lil is calmly telling her all the reasons she does not want to!