Friday, May 27, 2011

Care Package Etc

After getting home from the long awaited appt with the neurosurgeon, what to my wondering eyes should appear? But a priority mail box from a friend not so near. It was filled with lots and lots of fun stuff from my friend Missy and her family and it made me feel so loved! Here are its contents:*not pictured: a wonderful card with messages from Missy, her husband, her brother, her sister, her mom, and her dad! Oh and Lindor Truffles!

  • Neurosurgeon Visit: It went well in the regard that he was very informative and showed me my mri and ct scan from the hospital. He showed me the part where he saw bleeding around L3 vertebrae and pointed out that it was actually a clot (go figure, I can't get away from those suckers!) and it was right in the vertebrae fracture line so he was worried that if it continued, a chunk of that vertebrae would have actually broken off. Let me say I'm glad he caught that one because that sounds pretty painful. When he was scrolling through the testing I had done from the hospital and radiology ltd, he was like 'oh you got a dexa scan?' Which is the bone density scan I had just done 2 days earlier and I asked if he could look through the results of that since none of my drs had called me about it yet. So after he showed me the other stuff, he read through the dexa scan and kept saying 'Ooh. Oh. Oooh.' Like not in a good way. Then he said that I have Osteopenia. Specifically the 'socket' part of the left hip was like -1.8 and the 'ball' of that hip was around -2.4. Normal is 0, anything between -1.1 and -2.4 is Osteopenia, and anything lower than -2.5 is osteoporosis. He agreed that the bone loss could be part of the reason that my vertebrae got fractured from my fall into the soft sand. He said since I'm so young (I seem to be hearing that a lot lately) I could probably reverse the bone loss with tons of supplements and I need to have my level of vitamin D3 checked. He said it would be a good idea to do strength training to improve my bone strength and that I could start trying out yoga and really low impact things like a recumbent bike in about a week. Oh and big news is, I get to try to take care of the girls by myself starting Tuesday! Nola is about the heaviest thing I should try lifting at this point at about 16 lbs, wish me luck! Silver lining in all this is that the rheumatologist that my hematologist wanted me to see is willing to see my now even though he's not contracted with my insurance. So yay for getting away from the sucky rheumatologist I have now!
  • Rheumatology Visit: eh well, you know, it sucked as usual. I don't like this guy. Basically he just checked my head for lesions because my hair has been falling out in masses since I was in the hospital the first time. No lesions. I told him I wanted to get on Benlysta (the first lupus drug to be approved in over 40 years with some amazing testimonies to it's effectiveness) as soon as humanly possible. He said that he doesn't know exactly what the point of their trials were and he's seen no reason it should be used over the other treatments they have like using cellcept or other extremely harsh meds. Hello!? Benlysta actually stops your B cells from attacking like maniacs and allows your body time to heal itself! Just the thought that at some point in my life I might be able to feel 'normal' again makes me giddy. Other than that, it's dang expensive, like 2k/month and I'm not sure my insurance would cover it.
Today was our 6 year wedding anniversary! We took the kiddos out to my parent's house at around 11am and left them there to spend the night. They're so adorable! I just want to love on them all day long! Embry says the cutest things and I laugh all the time at the crazy stuff that comes out of her mouth. Recently as a response to her doing something good, she says, 'You will be so happy for me!' The other day Tony was wearing his pajama shorts and she goes to Tony, E: 'are these your shorts?'
T: 'yes those are my pajama shorts.'
E: 'that's your butt in there!' while pointing
The cutest part though is how much she accentuates the 't's on butt. Argh, so cute!
And Nola, well, she's just adorable. I love her big cheekies and her little rosebud lips. She's got her two little bottom teeth now too which makes for even cuter baby smiles. She's doing 360 rolls all over the place and she's kinda started to figure out how to scoot herself backwards. She laughs at things Embry does all the time, it's so cute!

Anyway, I got on a tangent there. The anniversary was good! We had lunch at the Olive Garden and then did some shopping where we found great deals on workout clothes for both me and Tony. I also got a few new tank tops because not only did I need some in general but with this back brace all of my tops are super tight to pull over it and try to hide it. The shopping was hard for me, hard to stand and walk that long, but we took many breaks to sit and rest. Then we went to see 'Thor' which, surprisingly, I really enjoyed. Then we came home and our wonderful friend Katie made us a delicious pot roast (seriously, one of my favorite meals) and we watched 'Beyond Borders' from Netflix which was quite depressing, but I got an anniversary foot massage, so it was worth it.

I've been thinking a lot about life lately. Why certain things happen...I guess I won't know for a long time. In the meantime, I'm going to enjoy every second I have with those who I love, especially my kids. Recently a girl that I knew from school in Wisconsin lost one of her 6 month old triplet boys. They don't even know what happened, he just stopped breathing, I mean how terrifying must that have been for her? I can't even imagine, I don't want to, but I know it's been weighing heavy on my heart ever since I read her blog. I don't know why these things happen, but I've been making sure to love on my babies so much more because of them. Please stop by Melissa's Blog and pray for her and her family or leave a word of encouragement. Life is precious, please don't waste a moment of it.

The other night, Nola was uncharacteristically whining in her crib long after she had gone to sleep. I decided that maybe something was wrong, so I went into the nursery and checked on her. Besides having a wet diaper, she was fine, so I changed her and then sat and rocked her for as long as my back could stand. I hadn't gotten the chance to do that with her yet. I went into the hospital when she was 6 weeks old and when I got out, I could barely hold her. Then she started sleeping through the night so she never needed me. Then this horse accident happened and once again I wasn't allowed to lift her. Things happen, people get busy, but I'm determined to remember what is important in this life and make time for long snuggles and saying 'I love you' and really meaning it.

1 comment:

JoAnn Nehs said...

Sometimes you have to almost die before you really appreciate life. You learned a very valuable lesson in all that you have gone through since Nola was born. That is a great lesson to learn to appreciate every minute of your life, You are such and inspiration to so many people. Keep smiling, life is hard. Love you so much.