Sunday, March 24, 2013

Chrome In The Dome

The other night we went to a car show here in Pocatello. there were some pretty awesome and old cars. There were also some not so awesome and not so old cars haha. We got to cast votes for our favorites. 
Lucy voted for a Purple car but I didn't get a picture of hers. Here she is standing next to this BMW, it was so tiny we had to get her next to it to compare. Apparently there are less than 1,000 of them left in the world. Crazy!!

This one was my favorite... Perywinkle... DUH!! It was pretty sweet looking

This one was Tyler's favorite, he also voted on a motorcycle. There were some cool bikes that I know my Dad would have loved!

We had fun, and we met up with Our friends, the Dutchers. Thanks guys for stopping in on your way to Salt Lake!

24 weeks

Ok so I know I just posted a picture 2 weeks ago... but look how much bigger I am! It is quite shocking when I see my side view, this baby is growing fast now.

The nice thing is now i actually look pregnant... bot just chubby. haha.  We are 24 weeks and 2 days.

On another note... we leave for Bellingham in 3 days!!! Ah, to say that I am excited would be a major understatement. It has been a long time since I have seen most of my family. They are all coming for Easter weekend and I can't wait! Some of them haven't even met Jake yet! Crazy..

I miss my parents most of all, it is so hard to live far away from family, but that is what makes times like these so special. We are going to soak it all up!!

Saturday, March 9, 2013

22 Weeks

hard to believe I am over half way there. He is starting to move a lot more, but still can't feel it on the outside. Hopefully in the next few weeks. It seems when I put my hand on my belly he just stops moving. Its always more fun when Daddy can enjoy it with you. I am going to really start growing now. I was looking back to when I was pregnant with jake and how huge I was at the end... why didn't anyone tell me?! I am not looking forward to that. But it will be worth it right?? I am excited to meet this little guy.

Thursday, March 7, 2013

looking back

It is really crazy to see where she was when we first found out about her RA. She wasn't walking, hardly moving even. This is her at 22 months, still not walking on her own. AS you can see she can't straighten her legs out. She has come so far. I am so glad that I recorded this important time in her life.

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.