Journal entry by Barbara Bradley — Dec 29, 2010

How was everyone’s Christmas? Ours was wonderful and maybe our best ever. We got passes to come home and be together as a family, an anonymous elf bought the kids’ presents, and it snowed!

Tomorrow we are outta here!  It has been some kinda year for us. In the past 6 months Katie has been in the hospital 4 times. In April she had her first 24 hour VEEG, we stayed 3 days in September for increased seizures, in October she had a 5 day VEEG in preparation for surgery, and November 15 started her surgical and rehabilitation journey up until now. If you had told me that was how it was going to go down, I would have probably run away.

Since our stay here, which began just three short weeks ago, I have seen dramatic changes in Katie. The day we arrived she was still in pain and was agitated more than anything else. While here she has learned to sit unsupported, move her right arm and yesterday she started taking steps with assistance but without the walker. She went from mute to the beginning stages of finding and exploring her voice. She has also regained her spunk, determination, curiosity, sense of humor, and fierce flirting powers.

She is making great strides but I know there are still many struggles to overcome. We have lots more therapy in our future.  During her basic exam by the audiologist she suspects there may be a hearing loss on her left side as a result of the surgery which we will need to explore further. This is somewhat frustrating because she also lost her right field of vision in both eyes (which we knew would happen). This will cause her to turn her head so she can see out of her left field of vision. If there is hearing loss on the left side this will be unfortunate for her as that is the ear facing people as she turns her head to see. She will also need to see a neuro-opthomologist for her right eye. The basic needs in life must also get back to working order. I was convinced up until yesterday she just may be a vampire. How else does one explain a child that does not see the need in eating, sleeping or pooping?? She was living on air and giggles alone.

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Speaking of giggles…. Here is an example of a typical night these days. I should begin by saying we taught Katie to fake sneeze this weekend. It just may be the most adorable thing ever ….well..until it isn’t. Katie usually gets her meds between 8-8:30. She doesn’t really have a hard time falling asleep but she doesn’t seem to be able to stay asleep. Sleep is regulated by the brain and she needs to relearn to sleep. It doesn’t help that she is painfully spoiled these days. I have been getting in her bed and wait patiently. until she falls asleep. I know.  I have no one to blame but myself but what else can I do in such close sleeping quarters? It’s her hospital bed and then my little couch/bed is just feet away. She is also very affectionate and craves tactile sensation. Normally that is very sweet but not when I’m trying to sleep. She not only wants me to lay with her and sing to her but our foreheads must be touching. Right? She is also twirling my hair because well, she is a hair-twirler and she doesn’t have any to twirl right now so what is a girl to do?? I then say prayers and by the end of the third rendition of you-are-my-sunshine she is asleep and I can carefully break-free. This would be good and fine if she actually slept through the night but she doesn’t. Lately she wakes up 3-5 times a night and will grunt and point at me on my little cot by the window until I get back into bed with her. Yes, it is exhausting.

So, now that you have this little ritual in your mind, you can better imagine last night. She woke up around 2 am so I get into bed with her. She was not even trying to be tired so after 10 minutes or so I closed my eyes and “ignored” her. Parenting life skill, right? This is pretty hard to do when she is 2 inches from my face but I didn’t know what else to do. Then I feel it coming on…..that’s right….  a sneeze. I scrunched up my face and held my breath and did everything I could do to stifle it but there was no stopping it. I sneezed. I tried my best to keep my eyes closed and pretend it didn’t happen but I knew what was coming. I cracked my lids open the slightest bit and waited. Katie went from complete stillness to a full body giggles and then mocked me! She fake sneezes right back. She interpreted my innocent sneeze as an invitation to play but all I want to do is get some sleep. I lots it at that point and buried my face in the mattress laughing.

Katie will go home with a loaner wheelchair while we wait for insurance to approve getting one made for her so this could take several months. She has new leg braces. The one on her weaker side is a taller brace and the other is just at the ankle like before. She will wear a splint on her right hand/wrist at night to keep her fingers from contracting and getting stiff and a splint for the right arm to keep it in a neutral position when she “walks”. We are looking at weekly therapy for speech, PT and OT. The staff here has also been working with the school district to hopefully get her into a special needs preschool. This would allow her to have trained teachers and get therapy while in school too.

This has been quite the year for my family. It is certainly not an easy life but it is a good life. I have said this before; one little girl sure can bring a lot of people together in faith. Here is to the close of 2010 and to the start of literally a new life for Katie and my family. Bring it on 2011! Happy New Year!