Thursday, March 7, 2013

Here we go again.

I have been delaying writing this post, because I like to talk about happy things. But I know there are some family members that check this regularly that are not on Facebook (where I do most of my posting)

We headed down to Salt Lake for another Rheumatology appointment for Lucy. She has been having some problems with a stiff neck and her wrists have almost no range of motion. So we needed to get down there to get her checked out.

I wish so much that we had someone closer we could take her to, it would be so much easier. But I guess life is not about easy. Sometimes you just have to do what you need to do for your children. I really just wish she didn't have to have this at all in her life. But like my Mom said, this is our cross to bear. and I say "our" because I am in this with her. It is my job to keep her healthy and make sure  she is taken care of. I cannot take her RA away, but I can make sure I am doing all I can to help her live a normal and happy, pain free life. And I have been HORRIBLE about keeping regular appointments, and I regret that. I have learned that sometimes I do not know what is best for my child. sometimes I just have to suck it up and follow doctors orders. Lesson learned!

So about the appointment. We went through all of the things that we as parents have noticed, as far as what seems to be her "sensitive spots". Then they did their evaluation. The diagnosis was that she has flares in her knees, wrists, neck, jaw, and some in her hips. This flare is not as bad as she has had in the past, but still pretty serious. they were worried most about her neck and jaw. most kids her age can open their mouths to 3.5 to 4 inches. She can only open hers to 2.5 inches. She can still eat just fine. just has problems biting hard things, like carrots. So for now they are putting her back on medications, and if that doesn't work for her jaw, then she will have to have a sedated MRI to determine the next point of action, which may be steroid shots straight into the jaw. So lets PRAY that the meds work. I do not want to have to do any of that other stuff.

The hard part about this age is that she has just learned to live through her pain. We ask her almost daily, especially if we notice her walking weird or something, we ask her if she is hurting? Because I can give her motrin to help with inflammation. but she always tells us no, she is fine. I think she has just accepted this as her life, and thats just the way it is. So its not that I am a bad mom for not knowing or worrying. Of course I worry. But the thing is, this is how it is. This is her life. She will have good days and bad days. Bad flares, and remissions. That is what RA is and does. It really sucks. and I know someday she won't have to deal with this. Some day she will be perfected and be pain free. But while here on this earth she needs that medicine. She is only 5. I want her to be able to live like a normal kid. And that is my job. Her Doctors are there to help her. So I am trusting them. And I am trusting Heavenly Father to help us all through this. He will protect my baby.

So for now, this is our lives.

Lucy gets her own medicine shelf. She is currently taking Methotrexate, Enbrel, Meloxicam, folic acid, and her daily vitamins.

The Methotrexate and Enbrel are once a week subcue injections given by me. The Meloxicam is an anti-inflammatory oral medicine that she takes once a day. The Folic acid pill, I have to crush up and mix with something, and she takes that once a day to help with any nausea or stomach problems she may have. She is also taking two multi-vitamin, and two omega-3 gummies each day to help with her immune system. This seems like a lot,  but in the next few months we will be able to taper off some of the medicines, as her inflammation reduces. We are better off than a lot of other kids in this world. Lucy is tough, and she will get through it all.

Thanks for all of your prayers. We love you all.

1 comment:

M. Harrison said...

Love you guys. You are amazingly strong Bonnie. We are sad that Lucy is showing more symptoms but hopefully she can get feeling better quickly. It is sobering to know what some kids have to go through and that they are humble and truly don't know what the norm is. Lucy will be blessed because of this trial that she has to go through, and I know that you guys will too.