April has probably been one of the best months we have had in quite some time. April has been filled with good news, and happiness over things to come :)
April was kicked off by our camping trip with our Cub Scout family. I had really been looking forward to this weekend as a little vacation. I was hoping that Emily would be ready to run around with her friends, but she actually wanted to be with me for 98% of our time there. The first night I think we kept everyone awake :) She has some, ummm, flatulence issues. Honestly, my little princess can let 'em loose better than any guy I know. Our first night in the tent she had gas so badly that she woke up her brother, and across the campsite her farts were heard. Kevin got a text saying "Gas gas gas :)" and we all about died laughing! This was around 4 A.M. We had a few people come over to the tent to see what all of the commotion was about. We were hysterical!!! What a great day that was. I love being out in the woods, and being there surrounded by family (including extended!) was really cool. We took a nice hike the next day. I wish I didn't have to push the wheelchair, that Emily wouldn't need the chair, but I'm so happy that she was able to come because of it. We saw some beautiful plant life along the way, & even stopped to grab some wild blackberries! That weekend was just what I needed to feel back in tune with reality.
Though it's not a huge, noticeable difference yet, Emily is definitely losing some of the steroid weight. She is so excited about that! She keeps telling me about different things that she can do, like button her pants more easily. I see a huge change in her attitude this month, likely due to the last steroid decrease. She has more energy, she wants to do more, she has some goals set. Because of this she is happier, doing things like walking more and playing Wii Sports again, and finally she is back to loving her brother like a friend! That has been the hardest part of all of this. She & her boy were always so close; suddenly she was cranky towards him more often than not, yelling at him and just being mean to him. I'm so glad they are playing together again. As Kevin said recently, harmony has been restored. It's the little things that we've missed, like that. She actually wants things again! I never thought that would make me happy! Yes, truly April has been a turning point.
She's doing well in school, too! She had the 2nd best grade in her class on her Time test. That is exciting partially because she missed that chapter & she worked extra hard to catch up! For a while she didn't care at all about her school work, or anything else. She's really determined right now, & I'm so thrilled to watch it happen. We had a fantastic IEP meeting in school for her. They are increasing her time with the school Physical Therapist, trying to pull her out during PE since she has such big limitations in there. She can do low impact things like walking, but nothing that could potentially cause injury as the steroids can cause brittle bones. Her teachers are very proud of how far she has come this year not only with her school work, but also with her attitude. She used to have "math breakdown", but she seems to have moved past that. We are very, very blessed that our school is as caring as they are. Before placing her in this class they really stopped to think & talk about where the best place for her would be. They were absolutely right to place her in this class. She isn't just taught; she is cared for. Obviously, any parent would want their kids cared for in school, but when it's a child that has dealt with so much, that really needed to be nurtured and loved, it is much more appreciated. I love these teachers in a way that I don't think they could understand. You just couldn't know how much their love for her has meant to me, or to her. They have impacted her life in a huge way. Truly that is God watching out for us, trying to make some things easier. They have been a gift.
Our Make A Wish volunteers called just the other day to say that we have been approved for our Disney Make A Wish trip! We are all so excited! All that I need to be happy is to watch the kids be happy; that makes this a dream come true for me. I was so happy that as soon as I hung up with our volunteer, I burst into tears. The kids kept asking me what was wrong :) I was just so happy. There have been so many things that Gir has wanted to do, but we haven't been able to accomodate her because of time or money. There are many things that this trip will address for her. And it will be wonderful for my dear, sweet little man. He's such a good boy, so tolerant & sensitive. He needs something really good. My mom told me the other night that he was telling her how things were going so well that he was worried about what was going to go wrong next. That's how things roll around here. I swear, it's always things that we could never have controlled in a million years. But hey, life is never boring!
More good news is that Kevin went for his yearly physical to find that everything looks good! His labs are where they should be, too. He is getting better slowly but surely. We go on our trip at the end of May. My hope is that by then Kevin & Emily will feel so much more like themselves. I want them to both feel good & have a great time. This trip needs to be magic, especially for Em, but for Kevin & the kids, too. I am so excited that I could burst! May is also our arthritis walk, too :) We look forward to that every year. It's so nice to be with people that understand you, even if you don't know them. I'm sure that I'm forgetting to mention a bunch of things, but I've covered the big stuff now.
I found a blog post that really hit me. It made me stop and think about how Emily must feel. Here is the "Arthritis Angels: A Walk In Someone Else's Shoes" post.
Hey, it's spring! Don't forget to look around at some of the beautiful flowers, including weeds, that have popped up :) I truly believe that these are gifts to us, meant to put things into perspective. Will you stop to smell the roses today? You really should....
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