Monday, July 1, 2013

The 6th relapse.


Most of the people who read my blog read my posts on Facebook. It's just so much easier to post a little blurb on there and have everyone caught up. I still feel like people don't really read this blog. I'm told they do though...It's odd for me to think that because this was once my diary and everything was so private.
Two weeks ago when I went to Hailey's room to get her ready for the day. I noticed she was blinking a lot. When I sat her up she couldn't hold herself in that position and when I put my hand on her back she started to do her little body relapse circles she does when things are going to start to go downhill. I just looked and her and said, "oh no..."
I texted Josh and pretty much wrote, She's relapsing again. He had said that it was early in the day give her some time to wake up more and let me know how the day goes. I texted back and said, "I've seen this 5 times before, I know what it is. It's happening again." Hailey's speech was slow and she asked if she could crawl. I put her on the floor and she bobbled. I put her in the crawling position and just yesterday she would take off, this day she fell over. She was very lethargic. All things/signs we've seen before. 
Since there wasn't anything medically that could be done for her this would be the first relapse that we would not admit her to the hospital, no IVIG treatment, no poking, no blood draws, no sleepless nights in a hospital room alone, just me and her with me crying myself to sleep.
Dr. Sarah did come over in hopes that maybe an adjustment on Hailey would either relax her or even reduce the duration of the relapse. We are so grateful for Dr. Sarah. When Hailey can't see Dr. Sarah, Dr. Lisa is there for Hailey as well. 
She started the vomiting and it seemed to stay with her for a longer time then any of the rest of the times. Her eyes were "getting stuck." Another thing with eyes was that when she was sleeping she would get startled and do a moro reflex followed by her eyes rolling up in the back of her head and not being able to snap out of it and focus. That was pretty scary, still is.
I called her pediatrician to ask for a refill on anti nausea medication and to let her know about the eye thing. She said that she would suggest an 24 hour EEG. She also suggested maybe hyperbaric treatments, and maybe also going to a children's hospital in California that does research studies and trials. 
It's a tough call. Doctors tell you that basically there is no cure, treatment or even hope your child will ever get better or survive past age 8 so you try to live life and be a family and enjoy your time together. Then on the other hand what if there is something more I can do, some where else I could take her. Do I want to live this life we have in and out of hospitals again? If we travel I want it to be fun, not be to go to another hospital to be poked and scanned and have her cry. What if they suggest something that could help? What if it's a brain biopsy again? What if we put her through more tests and they find what they always find...NOTHING. We've done 3 lumbar punctures, 8 MRIs dozens of blood draws, 4 IVIG treatments, 1 PIC line, 1 Central Line, and a blood transfusion all in less then 2 years! It's too much right now. 
There is 1 thing that was different this time around and it's kind of bugging me. I don't know if there was too much going on with Summer School on the horizon, Therapy appointments we went to, the days just weren't long enough for everything I had to do, but the thing that didn't happen this time was that...I didn't cry. I was tired and I was mad, but I did notice I didn't cry that whole time. 
I cry every time. Why not this time? There is a time when you want to do everything in your power to make your sick child better and you cry and you're mad and there is nothing you can do and then you just want it all to be over with. You want the pain to end. But when that pain ends I think another begins, so you are just stuck. "Living" each day. It gets worse for me when I have nothing to look forward to. We took Hailey to Disneyland, we went on our Make a Wish trip, we had family come visit for Hailey's birthday. Those were all things that kept us excited for each day. I also wasn't alone, I got temporary breaks. When this relapse happened it felt like it rained on a parade we just started. Hailey was sitting up on her own. She was crawling again and just as fast as the sun sets and rises it was gone again. All that work, another memory now. Hailey has to start fighting all over again and I can tell she's tired, but she won't give up, so we can't either. 
Josh says he wants to take Hailey to the Grand Canyon this year. While that doesn't sound like the most exciting thing in my eyes for a 5 year old, it's something he really wants to do with her so maybe I can try to look forward to that? This month is packed with appointments and school, but I'm hoping to get a break in August. 
Josh and I are also trying to live a Paleo lifestyle while I just call it a diet. I hear that people who are Paleo are be more energetic, sleep better, or just feel better in general while you help reduce the risk of lots of health problems people are running into now a days. I might not be very happy or enthusiastic about it (in fact I'm kinda bitter about it), but I only want to give it a whirl for 45 days. If anything else happens besides losing weight I might consider maybe doing a 80/20 diet. Giving up sugar cold turkey along with my Cherry Coke Zero has been BEYOND rough! Finally after 3 weeks I've lost 8 pounds so I have 30 days to go! 
If Hailey can learn to live without the regular diet she was used to then I guess I can at least give this my best try, but seriously no soda is HARD!