mamaVonna
Mouseketeer
- Joined
- Mar 30, 2015
12 years ago, my husband and I welcomed into the world a beautiful baby girl. We named her after our mothers Kathy Anne & Patricia Anne. Her name is Katyana Patrice and she was absolutely perfect!
Never did we imagine our baby would grow to be incapable of the many great things we saw in her future. Seemingly "normal" the first 3 months of her life, I started to notice little things that didn't seem quite right. Her legs didn't seem to move just right, she didn't roll over much-just seemed content to lay on her back and laugh and kick and squirm. Of course I addressed this with her pediatrician but he didn't seem concerned. Telling me that all kids develop at a different pace...not to worry. Fast forward a couple months and she just would not sit up by herself. Usually around that age babies begin to support themselves and can sit nearly unassisted. I start panicking, call the Dr. again to hear the same as before. When she was 7 months old she got a cold. Fever, stuffy nose, cough, etc. 2 weeks went by before she started showing signs of improvement. It was then that she refused to hold her bottle. She barely moved. She wouldn't hold her spoon anymore and had the toughest time getting and keeping food in her mouth. Back to the Dr. we went. This time, as soon as I told him what was going on he looked over her file and excused himself from the room. When he came back, he told me to get right over to our local children's hospital, they are waiting for us....WHAT?! He went on to say it's not normal for children to lose milestones, so NOW he was concerned about her neurological function.
After a tearful call to my husband we made our way to the hospital and began the whirlwind journey that has become our lives.
Katyana has severe spastic quadriplegic cerebral palsy, an almost 95% curve in her spine from Scoliosis (she can't be operated on; tried it, and there's nothing they can do about it). I feel so bad for her because she's very bright, but because her muscle tone is so incredibly high she can't do anything. Except smile. She has the most beautiful smile and some days that's all that keeps me going.
We've tried surgery, braces for her arms, wrists, feet, legs, back...she's so strong none of it has made a difference. Her little body is crippled all over and muscles are constantly firing. The only relief she has is while she's sleeping. She's also 100% g-tube dependent. Never had problems with swallowing or aspiration, I just can't get her mouth open long enough to feed her.
Ok, enough of the sad stuff...
Although she's non-verbal, Katyana speaks volumes with her big bright eyes and toothy smile. She loves Princesses and Fairies, jewelry, clothes, shoes, and anything pink. The brighter the better!
She's going into 7th grade and will be in the same high school as her big brother, and she is THRILLED!
I didn't think she would qualify for MAW so I didn't bother trying a few years ago when a nurse first asked if I'd ever considered it. I'm upset with myself now I didn't try sooner when she was doing better. Her cp and scoliosis has advanced so much she's uncomfortable sitting in her wheelchair longer than an hour or so at a time. So while we're in the parks I'll have to take her out every hour to get her stretched and give her a quick massage...I'm sure she won't mind!
She's so excited about her Wish trip! We watch YouTube videos of the rides she'll be able to enjoy, as well as many of the characters she and her siblings will be able to meet. She's especially looking forward to meeting Rapunzel (and Flynn) and Princess Tiana. She got a Tiana costume and crown for her birthday that she can't wait to wear!
Never did we imagine our baby would grow to be incapable of the many great things we saw in her future. Seemingly "normal" the first 3 months of her life, I started to notice little things that didn't seem quite right. Her legs didn't seem to move just right, she didn't roll over much-just seemed content to lay on her back and laugh and kick and squirm. Of course I addressed this with her pediatrician but he didn't seem concerned. Telling me that all kids develop at a different pace...not to worry. Fast forward a couple months and she just would not sit up by herself. Usually around that age babies begin to support themselves and can sit nearly unassisted. I start panicking, call the Dr. again to hear the same as before. When she was 7 months old she got a cold. Fever, stuffy nose, cough, etc. 2 weeks went by before she started showing signs of improvement. It was then that she refused to hold her bottle. She barely moved. She wouldn't hold her spoon anymore and had the toughest time getting and keeping food in her mouth. Back to the Dr. we went. This time, as soon as I told him what was going on he looked over her file and excused himself from the room. When he came back, he told me to get right over to our local children's hospital, they are waiting for us....WHAT?! He went on to say it's not normal for children to lose milestones, so NOW he was concerned about her neurological function.
After a tearful call to my husband we made our way to the hospital and began the whirlwind journey that has become our lives.
Katyana has severe spastic quadriplegic cerebral palsy, an almost 95% curve in her spine from Scoliosis (she can't be operated on; tried it, and there's nothing they can do about it). I feel so bad for her because she's very bright, but because her muscle tone is so incredibly high she can't do anything. Except smile. She has the most beautiful smile and some days that's all that keeps me going.
We've tried surgery, braces for her arms, wrists, feet, legs, back...she's so strong none of it has made a difference. Her little body is crippled all over and muscles are constantly firing. The only relief she has is while she's sleeping. She's also 100% g-tube dependent. Never had problems with swallowing or aspiration, I just can't get her mouth open long enough to feed her.
Ok, enough of the sad stuff...
Although she's non-verbal, Katyana speaks volumes with her big bright eyes and toothy smile. She loves Princesses and Fairies, jewelry, clothes, shoes, and anything pink. The brighter the better!
She's going into 7th grade and will be in the same high school as her big brother, and she is THRILLED!
I didn't think she would qualify for MAW so I didn't bother trying a few years ago when a nurse first asked if I'd ever considered it. I'm upset with myself now I didn't try sooner when she was doing better. Her cp and scoliosis has advanced so much she's uncomfortable sitting in her wheelchair longer than an hour or so at a time. So while we're in the parks I'll have to take her out every hour to get her stretched and give her a quick massage...I'm sure she won't mind!
She's so excited about her Wish trip! We watch YouTube videos of the rides she'll be able to enjoy, as well as many of the characters she and her siblings will be able to meet. She's especially looking forward to meeting Rapunzel (and Flynn) and Princess Tiana. She got a Tiana costume and crown for her birthday that she can't wait to wear!
From that point we were told a pair of volunteers would be appointed to her case and once that was done, we'd hear from them to officially get her Wish. Ok awesome! But then nothing...we waited 
and waited 
, and nothing. No calls, emails, or the welcome packet we were told should arrive in a few days. 
I almost cried!! She said she'd be in touch once she spoke to the other wish granter, Taylor. Woohoo! I got an email yesterday morning that we can meet this Friday evening. I am beyond excited and now all my furious planning has purpose!
. Anna and Taylor arrived right on time and with a gift for each of the kids. Tyana got a small Princess make-up case with lip balm and gloss and an iTunes gift card so we can download some new music onto her iPad. They brought Kavon a Target gift card (I've found teenage boys hard to buy for-we got him a 32"in flat screen for Christmas to replace his enormous really really really OLD big screen, terrible picture, doesn't work half the time...yeah, he didn't want it. Not big enough...so it's in our bedroom now). 
sorry....Kaylei got a cute Littlest Pet Shop set which was PERFECT for her because she adores animals. Keira got a Mega Bloks car set. 
Yeah, we'll see
I promised to try.
I really should "let it go" and let her do her thing. 
*Sigh*
. When you order from 
So worth it though! Everything has to be perfect!!!!!!! So flipping excited for your crew!
.
