Whew! Thanksgiving is over and we had such a great weekend seeing everyone. Boy oh boy am I glad it's over though! Isabella did wonderful the entire weekend, she is such a trooper. It was a busy 4 day weekend and Isabella was a happy clam the entire 4 days!! Sometimes I just marvel at how well she learns and adapts with what she has.....something for all of us to think about for sure. ;)
Last week we started therapy with her new Occupational Therapist and she is the BEST! I am so excited! We are ordering all kinds of neat equipment for Isabella that will really help her join the family and be more comfortable. Soonerstart is loaning us something called a tumble forms feeder seat that is just plain awesome. It looks so uncomfortable to Matt and I, but Isabella really likes it. In fact she falls asleep in it almost everytime she is in it! :) It's great for feeding her and also just great for her to sit in, it really helps her to sit almost upright...what a new world for her! We are also ordering something called a kidcart for her since she has almost outgrown her infant seat. Her therapist mentioned that some moms don't want a kidcart because it makes their childs disablity really obvious in public. Clearly I do not have that issue, although I don't really look forward to the stares we'll get, I know they are normal and I would glance too. The kidcart is a stroller just for kids like her. She will get to sit upright when I take her and Jackson places instead of laying flat on her back. I cannot wait to get it!!!
Ugh, we are battling seizures again. I know, I know, it seems like were always battling those nasty things. We thought the ACTH she has been on was going to work, but no. Now her Infantile Spasms are getting worse and worse, plus she's starting a new seizure type that I don't know anything about (uh oh time for more research!) ;) So, if you get a chance, pray or whatever it is that you do, that her seizures S T O P!
Well, I hope everyone had a fantastic Thanksgiving and has a wonderful Holiday season! I love this time of year and I know we all have so much to be thankful for :) One of the many, many lessons I have learned throughout this process is to cherish what you have today, right now. Things change in an instant and you never see it coming. We all have something to be happy about, so let go of the negativity!!!! You have no use for it and neither do those around you :)
Love,
M.
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2 comments:
Yes, Thanksgiving was a great time for everyone this year. Our family enjoys getting together and it was great as usual, this year. Jackson, Sydney and Isabella all did great. It was so much fun watching Jackson and Isabella singing Happy Birthday to everyone in the room when we were at Mom and Dad's on Thanksgiving. And, the next day, when we had the brunch at Jackie's house, the feeling of comradery with everyone was so nice. I loved it!!
Love,
RuRu
Hi Michelle! You have the greatest spirit! Bella needs that in you and you have an awesome one for her! You guys are very much in my prayers and will stay there. Also, I need to know how to find out about the run for her. Is it a marathon? I know some people from Stigler that are very interested in it because they have a son battling the same thing except he has other problems also and they don't have the privelage of keeping him at home with him. Anyways, please let me know so I can get her the info.
Love ya all!
Deena Farrow
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