(Making goofy faces in the hospital)
I am hoping we can get her blood tests only once a week soon because everytime we have to go and get her blood drawn it is a horrible experience. She has such tiny veins and all of the veins in her hands and arms are completely shot. They have to get the blood out of a vein in one of her feet and even then they have a really hard time finding a spot. We have now requested the NICU nurses do the blood draws because they are better with little veins.
Lizzie is a trooper though - she hardly cries and is really patient most of the time. We have been soaking up the sun going on wheelchair walks every day. Lizzie has a very low tolerance for being outside very long or really doing anything for too long. She gets extremely fatigued easy and takes a couple naps a day and sleeps 12 hours at night - we're just glad she's catching up from the lack of sleep over the last month, although we're a little jealous because we desperately want to catch up too!
(outside at the hospital with Grandma)
Today we went to about half of church with Lizzie - she got super tired and a little agitated towards the end, but it was good to be out and see what her tolerance levels are.
(Lizzie cussing out Mickey Mouse - she told him "Get Away You Stink!")
Lizzie's short term memory is not all there still and her personality is definitely altered right now, but we just have to remind ourselves that the neurosurgeons told us it would take 6 months to a year to get any sort of the child we used to have back as far as personality goes.
It is still hard though to have her here and for her to be so changed. We went walking yesterday and we saw a few friends that Lizzie has played with in the past. They were just being kids and having a blast running all over and my heart hurt a little for Lizzie. It is just heart-wrenching at times being in our home and normal routine, but having her be so un-normal from who she was. She is still a giggly little girl and happy so we are grateful that she still is fun-loving and loves to laugh.
We continue to feel such gratitude for everything that has happened and for all the help we've received. We wish that Lizzie didn't have to suffer - but we have seen miracles happen in our lives as a result of this experience. We feel much closer as a family and extended family, we have better relationships with people that were already our friends and we have made new lifelong friends - we are so grateful.
(Lizzie this week soaking up the sun)
7 comments:
My heart hurt for you reading this. If not for the miracle in the mix . . .sheesh. I loved seeing your cute and saucy Lizzie in pics :-)
I'm so glad everything is staying stable with Lizzie. That's fabulous! It will take time for her to recover. She will just get a little better every day, but it will come. Has Lizzie started PT at home, yet? It is very difficult to see children doing things your child can no longer do (at least right now). Matt had just started playing football when we found his BT. His team wanted him to come to a game when he got home and it was the absolute WORST thing we ever did. Matt was upset. He still had no short term memory, but he knew enough to understand that he couldn't play and would never play again. It was truly awful. The things we took for granted, huh??? :)
Lizzy is beautiful...... so so glad that her sodium level is in normal range.....:) You know that as soon as Lizzy came home the sun came out and tulips started to pop out of the ground what a wonderful sign....:) Love you all ... Rallison's
Every time I read one of your posts and think about everything you guys are dealing with I want to weep. Heaven knows its hard enough just having kids and dealing with the everyday stuff, and you have been pushed above and beyond what any parent ever imagines. You have an amazing way of expressing it with your words.
Carol, you're such a wonderful Mommy and Lizzie is in such good hands. You guys are going to be ok!!! Will keep you all in my prayers. Hang in there.
Cindy
My heart sure goes out to Lizzie and you guys! Thanks for posting the pics! She looks like she feels so much better and is loving being home! I hope the blood draws are over soon too! So sad she has had to go through so much in such her short time here on earth, but so glad she is doing sooo much better! It's amazing how these giant trials in our lives turn out to be a blessing in disguise so to say and make us really learn and grow from them! Love you guys!
I'm sorry that life is so up and down right now.I hope things will get easier soon. Lizzy is so sweet and looks so good! I hate that she has to go through all of the shots and needles. She really is amazing!
p.s. Carol, you look so beautiful and I love your hair cut. I hope your spirits are o.k.
She is so cute! I love to see her pictures. There's something about her smile that just touches your heart.
I'm glad she's home. What a relief. I can't wait to see her this summer.
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