Hi Everyone,
This is my blog to keep you updated on how I am doing. I know that my mama tries to keep you updated but after awhile it's hard.
My mama is going to fill you in then I will take over from there since I have to do things myself. I don't know where I get that from:) My mama swears it isn't from her!!! My
nana says it is:)
As a newborn, Lily had some pretty serious GI issues and major allergic reactions to all vaccines/immunizations. After every single one, she had a fever of 105+ and was hospitalized. At 3 months, she was started on cereal. Since she was born, she hasn't been a fan of eating. At 6 months when she wasn't crawling and didn't like standing up, I noticed her leg was
pronated. We watched it and the doctors just thought that it would work itself out. She didn't start walking till she was 16 months old, after Mike left. At that point, she didn't apply pressure to her left leg for more than 3 seconds. Still, doctors thought it should work itself out once she walked more.
When we finally got settled into life in Santa Barbara, I allowed her to get a few more shots that were in her best interest. Once again, allergic reactions. We moved to Santa Barbara in Dec. of 08 and mid-December, she started developing serious hives, fevers and
random swelling of her left knee. February we went to an infectious disease doctor at UCLA since she had such issues and
Roseola. They didn't know what was going on. When I started my own research online, everything came back to
CP or arthritis. In March we went to Dr.
McCurdy. She is Lily's Pediatric
Rheumatologist. Dr.
McCurdy was very
leery of formally diagnosing her because of her age. She had all the signs, but her young age was pretty alarming. We started Lily on
Naprosyn and
Prevacid to see how she would react. She was
ok for a few months then started having serious GI issues. She went through a phase of throwing up about 20 times in one bout. The worst of it was over Christmas of past year where we spent the surrounding days in the ER.
Since December 09 to now, Lily's arthritis has rapidly progressed. She has been to numerous specialist and her general care doctors more times than I can recall. Let's not go into what the outstanding medical bills are after insurance pays out. She is now on
Methotrexate once a week. From the very first dose, she had reactions to it. She got the mouth sores and some pretty serious rashes/hives. It seems to work for a few days.
This past Wednesday, Lily got braces for both feet/ankles. She has to wear them all day to help build up the
ligament that is lacking in her left foot. We are hoping that the braces help with the
pronation of her feet and knees, which will hopefully ease some pain for her.
Lily will continue with physical therapy and speech therapy. She receives both at least twice a week. There is talk of adding aqua therapy and occupational therapy to the schedule. Somewhere in there I wanted Lily to go to Preschool 2 or 3 mornings a week.
At this point in time, Lily is in constant pain. She pushes herself to do things herself. More often than not, she wants to do it on her own even though it hurts. My heart breaks when I hear her in the middle of the night screaming because she can't "bend hand, no bend hand" or "no foot move, no foot move mama" or "I'm hot. I'm hot" or "mama, I hurt. I hurt all mama". Talk about heartbreaking, I hear it most days. It was almost easier when she couldn't communicate. I love that she can be more specific, don't get me wrong. I'm just a mom who wants to take all of her pain and agony away. The rashes/hives and hot and swollen joints are tough to see, I can't imagine how it feels.
I dream of a week where Lily has no flare-ups or rough mornings. I dream of the night that Lily sleeps through the night and doesn't wake up in pain. I dream of the years down the road, praying hard that she outgrows it quickly. I can't let the fear rule my thoughts. I am realistic as to what is going to happen. I do everything to prevent it now. I fight the battle at hand and look to see what I can do to help ease it in the future.
I am thankful that Lily isn't as bad as other kids. There are plenty of healthy kids but there are also plenty of other families dealing with much worse issues. It's a different story when it's your own kid. I try to remain positive. I'm human. Some days I just cry with her because there is nothing I can do to take it away or relieve the pain. Some days I laugh all day with her because she is feeling
ok. Lily and I live hour to hour and day to day. It greatly varies.
Please keep Lily in your prayers and good thoughts. Please pray for me.
My motto is: "It is what is. Now what?" and my new mantra is "Superwoman ain't got
nothin' on me!!!"
Blessings,
Stephanie
