Saturday, April 16, 2011

A post from Jen!

OMGosh! I am actually sitting at a computer viewing this blog instead of on my cell phone and it looks sooo good. I can't thank my sister enough for starting this blog! A doctor in the beginning of our journey recommended doing a blog as a way to keep friends and family up to date with everything that was going on and it was the best idea! For the first couple of days, we spent every free minute texting, emailing, updating facebook, and making phone calls. Every conversation and post was a repetitive, emotional mess. I owe my sister Heather big time for making timely and accurate updates. She spent a lot of time doing this and it took time away from her own family time. Heather, THANK YOU! I feel like I could spend every minute of the next year thanking everyone and it wouldn't be enough. My own customers who never once bothered me about pending orders that are now almost 2 months old. The many emails and comments with words of encouragement, thoughts, prayers. You don't even begin to know how especially during some of the worst times at the hospital, sometimes just the smallest little comment would help. My husband's fire department who brought us dinner almost every single night, their support and gifts. GREAT neighbors who showed my Mother in Law support by bringing meals or taking our older boys out for the afternoon, or just stopping by to see how SHE was doing. My MOTHER IN LAW especially! I don't know what we would have done without her! She basically missed worked for the last month to take care of our boys and pets. Became a "mother" again for the last month...dealing with school work and behavior. I know it wasn't easy. She also has stayed with us this last week while we got accustomed to our new normal. My own family who came and visited with us at the hospital many days. A change of face to look at, a shoulder to cry on (many times), a conversation other than "medical" stuff, somebody who could be strong for us and allowed us time to not be, was so nice! There are so many of you who I haven't mentioned and I want you to know that my husband and I sincerely appreciate every thought, prayer, and donation. We are truly blessed with the people in our lives and I didn't even realize just how much! Now for what you probably came here update on Hailey! This past week we had evaluations with the rehabilitation place Hailey will be going to. She continued to amaze everyone there with her quick progress! Occupational Therapy determined she would like to see Hailey 3 times a week. This is for Hailey's fine motor skills. The neurologist who oversaw Hailey's care in the hospital said he first thought Hailey's feet (walking, etc) would be the last thing to come fully back, but he now feels its going to be her hands. The therapist in fact said "The hospital sent a report of what Hailey could and couldn't do and I shouldn't have even spent time reading it because what they said she couldn't do then, she can already do 2 days later. I should have just asked you guys for a report this morning!" We also saw the physical therapist. She has determined she would like to see Hailey twice a week, one day of which will be spent in their pool. The water temperature is kept in the low 90s which is a therapeutic temperature she said. The other day will be spent either outdoors or in their "play room" working on things. It's always very interesting to watch them interact with Hailey. They would have her do things and Dave and I weren't even aware she could do them yet! For instance, she had Hailey walk down the stairs. Hailey held onto the railing with one hand and the therapists hand with the other. She had a little tykes slide Hailey wanted to go on and the therapist helped Hailey and informed us Hailey had pulled to a stand all on her own. It's like watching Hailey go through the milestones she accomplished as a baby all over again, only at a much faster pace. They are as exciting the second time around as the were the first! We now have a regular therapy schedule which starts next week. 4 days a week will be spent going to therapy sessions. We also had an appointment with Hailey's pediatrician. I can't even begin to tell you how happy I am with the practice we belong to. They quickly diagnosed Hailey with the Guillian Barre from the beginning. If she had been misdiagnosed, this blog could be about something I don't even want to think about! For something this rare, I am so impressed with how fast they picked up on it! The pediatrician is going to be seeing Hailey again in another month to keep up with her progress and refill her prescription for her nerve medication. Dave and I? We're hanging in there. I think about the events of our last month constantly. Flashbacks of the most horrible parts. I am hoping time will heal this wound and it will be a distant bad memory. Dave goes back to work this week full time. He was approved for Family Medical Leave Act so if he needs a day off to take Hailey to therapy or drs appointments if I can't, he can do so freely. He also plans to start back on his duty nights at the firehouse very soon as well. Things are getting back to "normal". A new normal. A different normal. A much happier normal than the last month. To close, I want to wish the BRAVEST, STRONGEST, little girl I know, Hailey, a Very Happy 4th Birthday! We're having a VERY small party for her tomorrow at our house. Her real birthday is Monday and we are over the moon that she is spending her birthday at home instead of in the hospital! Her immune system is dramatically weakened by the plasmapheresis treatement she endured so we have to watch how exposed she is right now, however, we had a big party reserved for her at Pump It Up...a big moon bounce filled place. We had plans on inviting all of her friends from school and the neighborhood and we plan on throwing this big shindig at some point this summer. Instead of a "Birthday" party it will be a "Hailey can jump and run again!" party! We can't wait to see everyone there! I plan on writing updates often to keep everyone updated! Keep checking back! And let me say once again.... THANK YOU FOR EVERYTHING!!!

1 comment:

  1. Greetings. I included your blog and or video in my website. It's a list of first-person accounts of people who are battling GPS and its variants.