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| Lily w/ her aunt melissa, Sleeping while her presents were being opened! |
We threw Lily a party for her birthday on Nov 19, 2011. The turn out was great success. We had family and friends over to celebrate. The theme was animal print. Gray, black, white and pink. I know it sounds tacky but it turned out really well. Lily's cake matched her party dress.
Even though my friends and family know Lily is not typical, I think it really came to light at her party. They seen a one year old who is closer to a 4 month old developmentally.She did not participate when I put her hands in her smash cake or opening her presents. I have to admit this was a bitter sweet day for me. It makes me sad that Lily didn't particapate in smashing her cake, to me its a 1 yr olds writ of passage. I almost felt silly even trying the smash cake because I knew the outcome while some of our guest did not. But I figured why not she only turns one once and I dont want any regrets.
Looking around the room of people watching my one year old was interesting. Everybody had a different expression on their face. Some were ready for her to dig into that cake and make a mess and others had a look of why are you even bothering to do this. I was somewhere in between. I knew she wasn't going to dig into the cake, but I hope that she might have some sort of reaction.
Lily has made some developments that I am very proud of. Her muscle tone has gone down dramatically.She use to be so tense that her legs were literally stuck together and crossed, called scissor legs. She now has great range of motion, even with an abnormal hip. She can roll over from her belly to her back and she was been working hard learning to roll from her back to her belly. She can sit supported for a few mintues as well. I know this doesn't sound like much for a one year old but in the world of Lissencephaly, it's huge.
I got some typical questions I hate answering especially when it comes from people who should know the answer already. No, Lily isn't going to be eating by mouth, EVER. Yes, she use to have pleasure feeds where she would eat about 10 mL's of baby food. This is not even a half of an oz, so no it's not enough food to sustain life, again pleasure feeds. This has dropped off dramatically in the last few months. We aren't sure why. It could be because she lost her newborn reflex to suck. After this goes away eating is a learned development. I do try daily and she has speech therapy bi-weekly, but it has come to the point where she doesn't want to swallow and feeding becomes more dangerous then it is worth.
In this first year of Lily's life, we have been to more doctors offices then I would care to visit in a life time. I have educated myself with more medical terminology then most medical students and have become a part time Physical therapist, occupational therapist, speech pathologist and Early interventionist. I have learned how t'o insert NG tubes, take care of peg and mic-key button tubes, operate a feeding pump, apnea monitor, suction machine and bipap machine.I have also educated nurses on feeding pumps, farrel valve bags, and ALOT of terminology. I learned alot about people and how judgemental and cruel they can be without even noticing they are like that. I learned to except the "R" for what it is. (retard for those of you wondering). I learned it is just part of people's vocabulary and most times they don't mean it to be hurtful. I think its just one of those words you learn as a kid that sticks with you and isn't meant to hurt or make fun of people with developmental disabilities. I think it's just something you can't understand unless you live it. This year has been a test, a test of strength , of will, and personal growth. I have learned to be realistic and accepting of all things good or bad. All in all, Lilyana has made me a better person. SO even though this year has been hard, we have been lucky. Lily only got sick once. The only hospital stays were for feeding tube placements and an EEG.
I would like to say thank you to everyone who came to Lily's party. To me it wasn't a "party" but a gathering to celebrate Lily's LIFE.
