Eye Update

Well we had another appointment at the Children's Hospital yesterday. I can't believe we've been trekking out there for over 6 months now? Time flies. Kalea was so well behaved while we were there and I found myself noticing how much she's changed just since our visit in March. She was SO friendly with everyone, the staff and all the other patients and their mom's. Her favorite conversation starter lately is "What are you doing here?" and she used it lots yesterday. We kind of love going there, someday when her vision is all sorted out I think we're really going to miss seeing all those friendly faces. We lucked out and even got to see the hospital "I.T." guy bring in some new computers, which all the kids were pretty interested in. When we went to the exam room Kalea knew right where to go sit and says to Heather(optologist), "Now you get the dragon toy"- because they put these little dollar store toys on their lights so the kids will follow it, etc... pretty hilarious that she even remembered the dragon, luckily there was one in this particular room or I'm sure we wouldn't have had a very good visit. She cooperated really well for all of the "eye games" that we played and she even let Heather patch each eye individually this time to get a more accurate reading on her vision in each eye separately. That was HUGE, she's never cooperated very long for that, so we were all thrilled that she left it on and was fairly focused on what we wanted her to do. When she was done that part of the exam she was sitting in the big exam chair and I realized how much she's grown, she wasn't looking so small in it and then the following happened:
Kalea: What are you doing?
H: I'm writing my notes about how you did with your games today.
K: Oh...Heather?
H: Yes Kalea?
K: I love you Heather. (biggest squinty smile ever)
H: (all of a sudden much perkier than before) You are SO sweet Kalea, thank you!

This girl just melts me lately.

Anyways, we were grateful that we didn't have to wait nearly as long as we normally do this time around and while we waited Kalea just sat nicely beside me and ate her snack and then curled up next to me on one of the couches. This is SO not how she normally behaves, but it was so nice. We went in to see Dr.Cooper and talked about the drops we've been doing and there's no real big change in her vision in the bad eye since our last visit, so we can stop those now. It's kind of nice to not have to battle it out with her every day to do those anymore, she's starting to really not like them which is another sign that we've probably topped out at how much they're actually helping her. Patching isn't going to help things at this point either so we don't have to do that. So we are moving forward with what I guess are the first steps in the actual correction of the position of the eye. Our doctor has put us on the cancellation list for an MRI so they can get a look at what's happening with the nerves of the eye. This is a huge relief for two reasons, one being that I have been curious since the ultrasound I had with her when they freaked me out and pointed out some things in the brain that could've led to huge genetic disorders that she wouldn't have survived, and two because I've been feeling the need to speed things up for the last little while. We're lucky that we live in the city and we're especially lucky that we have the doctor that we do. She wasn't willing to just throw us on a 6mth waiting list and put us on the cancellation list because we can get the MRI in the next 2mths that way. She also asked me about Kalea's tics because the more "neurological type symptoms" that she can identify the faster we can get up the list. This is all great stuff for Kalea, and again, just more evidence of how aware of our situation Heavenly Father really is. All my prayers from the night before were answered and when the doctor was asking if I was really okay with all of this I couldn't help but smile and tell her that it was exactly the direction for treatment that we were hoping for. She gave us the option of a CT scan but because of the amount of radiation involved and the fact that Kalea would have to be in a super cooperative mood to hold still for us, we opted for the MRI. The MRI is great for so many reasons, they'll get the clearest pictures possible, she'll be "put under" so it won't be a scary experience, and lucky for us, they just got a new MRI at the Children's so she'll be going somewhere familiar to her, they'll give us 48hrs notice and we'll have the results by our next eye appointment in August, the week before her birthday.
I'm not immune to the thoughts of dread or fear that come along with having Kalea have an MRI. We're hoping for the best and that it really is just a weak nerve or something, but at the same time, the more research we do about these things the more possibilities that there are, and I have a sneaking suspicion that Dr. Cooper is curious to see if there might be more to this than just a vision problem and she's just not saying it yet. She asked me some interesting questions yesterday, so if everyone wants to join us in some prayers to get the MRI sooner rather than later- just in case there is something scary in there, we'd really appreciate it.
Until then we are just enjoying the weather (when the sun appears) and keeping ourselves busy with playdates and trips to the park/lake/temple (see below!)


Megan said...

I'm so glad that your family is receiving awesome care! I'm curious when your trips to the NW will bring you to my place... You know you are welcome anytime!

Allison said...

I know, I'm horrible though, when we're done I just wanna go home and take a nap. Depending on whose watching Brynlee next time, maybe we can swing by for lunch before our appointment?

Sheri said...

You are an amazing and strong Mom! You are in my prayers.