Wednesday, June 29, 2011

Round two

For those who don't know, Lucy was diagnosed with Juvenile Idiopathic Rheumatoid Arthritis in June of '09. Was declared in remission last November and has been medication free since then. About Two months ago she started flaring up again. She was having morning stiffness, and having trouble walking up and down stairs, and cannot open her mouth wide enough to take bites of food. among other things. So after much prayer and discussion Tyler and I decided to get her back on medications, this was NOT an easy decision.

What a day yesterday was! We left Pocatello around 12:30ish after Tyler got done with his class, and headed to Salt Lake. Lucy was so excited to go see her Doctor... little did she know. we got to Salt Lake at like 3 and Tyler and i decided to introduce ourselves to In and Out Burger, since neither of us had ever been, and all our friend to is RAVE about it. Results: eh.... I know some of you will probably disagree, but I didn't really think it was anything special. I would much rather go to 5 guys, they have way better fries, and you can put whatever you want on your burger! Although the price was great. I would probably go again if given the chance, but not my FAVORITE.

We finally made it to Primary Children's and we checked in, well tried. They told us the wrong Hospital. Dr. Bohnsack was not at Primary Children's that day, he was in Riverton... so they called over there and asked if he would still see us and he said he would. So we drove the extra 40 minutes in rush hour traffic to the Riverton Hospital. It was now 5pm and we were the only ones in that section of the hospital. Last patients of the day.
Bernadett came in (the dr assistant) and checked Lucy out. And suprisingly Lucy did really well with her, this was a huge change from a year ago. She noticed that Lucy had flare ups in her neck, jaw, knees, hands, wrists, and elbows... to name a few. This all happened in a matter of two months. Since Lucy first came in in such bad shape and the disease was so prevelant in her body, that a flare up like this needs drastic, fast action to get her feeling better and also to make sure her joints and bones don't get damaged from the swelling and inflamation. Then we started talking about a plan of action. They put her on 4 different prescriptions. This seems like a lot.. and it is a lot for me to remember. Especially because two of them are everyday! She will be  doing the two injections every week that she was on before, Enbrel and Methotrexate. And those will be given sub-cued by me. Lucy gets a little nervous now that she is a little older, but she did really great this morning. Only nervous of the thought of the needle, but after  it was done she was fine and realized it wasn't that bad. she is also on a folic acid pill, which I will have to crush up and mix with apple sauce or yogurt every morning - this is supposed to help with symptoms from the Methotrexate like nausea and such. And she will be on Prednisolone everyday for the next 6 weeks. This is a steroid that will probably be the most fast acting to get her to feeling better. The Dr told us that this will also increase her appetite and hopefully help her gain some weight. They were worried about her being so little, she weighed in yesterday at 27 lbs, which is low for a 3 1/2 year old. Especially since a year ago she weighed 23, so she has only gained 4 lbs in a year. But seriously.... she does eat, and we do feed her! She just has a small stomach I guess.

They also wanted to take some blood and do some x-rays, so we headed down to the lab, they kept it open just for us. I was so grateful. Lucy did awesome with the blood work, only cried a little bit and was so excited that she got to get a special band-aid. then we headed over to medical imaging, and this was the rough part of the day. I of course couldn't be in there with her because I am pregnant, I just stood behind a wall and could see through a window what was going on. They got her hips and hands done, but when they moved her into the next room and had to do her neck, she flipped! She was not having those ladies touch her anymore! Yes... she is a red-head, and yes she has a temper and can be so stubborn when she wants to be. I almost started crying I felt so bad. Nothing feels worse than not being able to be there for your child. Tyler could be in there but she was crying for Mommy. But we got through it and she got to hug me all she wanted after it was all done.
Then we headed to See grandpa Haas! What a great treat after a LONG day of Doctors and nurses. we were only able to visit for a couple of hours since it was so late. So we headed home back to Pocatello. we arrived in town about 11:30 so I decided to drop Tyler and Lucy off at home so he could get her in bed, and get some studying done. I went over to the pharmacy to get all her meds. they told me it would be 10-15 minutes, what he should have said was it will be 10-15 minutes for EACH ONE. finally they were done at 12:30am. and I was beat! I went home and straight to bed relieved that my sweet daughter will finally start feeling better and stop hurting.

This was a big decision for me to get her back on medications. I am not a fan of just medicating everything, especially for her being so young, but she went from bad to worse so quickly that I had to do something. There were days in the last two months where Tyler would be helping her get dressed and Lucy would just cry in pain and he would cry along with her because he couldn't bare to see his daughter like this. I think for me it is something that I see and deal with every day, yes I get sad, and have my moments, but it really hits him hard because he doesn't see it as much when he is at work or at school. But we are on the mending track again. and hopefully she will get back in control and her arthritis will yield.
We love you all and are so grateful to feel the love and support. This is an on-going battle that hopefully someday we will win.

4 comments:

amber malmberg said...

You are a strong, brave woman. And it's amazing what you fight with every day. You may feel like your trials are unlike any others, but you are NEVER alone. There are many people who love and pray for you all!

Chris, Lori and Morgan said...

Sorry that you guys (and especially Lucy) are going through this again so soon. Hopefully the meds will help and she will start feeling better. Can't wait to see you guys next week! Morgan is excited to play with Lucy and her other little cousins! :)

Kayla Conover said...

Sorry to hear about that. Hope she gets better soon.

M. Harrison said...

I am so sorry that you guys have had to watch her go through this again. To see you child have to go through pain is probably one of the hardest things that we will have to face in this life. I hope that she starts feeling better quickly. Love to you all, and happy birthday Bonnie! We hope that you know that we love you. Have fun with your family and hopefully we can catch up with you next Wed.