A Forum For Those Touched By Pallister-Killian Syndrome
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Noelle & Nasaya Coleman
- Female
- Charlotte, NC
- United States
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Noelle & Nasaya Coleman's Discussions
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Profile Information
- What is your child's name?
- Nasaya TyMara Coleman
- How old is he or she?
- 6mths old 9/23/2009
- At what age was your child diagnosed with PKS?
- October 24, 2008
- How long ago was the diagnosis?
- I was 4 1/2 mths pregnant.
Hi
My name is Ayanna Coleman(Noelle). My daughter Nasaya(pronounced like messiah//means Miracle of God) was diagnosed by an amnio in Oct 2008. She was born on March 23 2009 weighing 9lbs 15oz. So far she's suffering from a arched palate(mild arch),and mild hypotonia(she can get floppy for a brief second then her tone kicks in and a little contracture for briefly then she normalizes)and a floppy airway(my husband and parents are scared by her breathing when she gets excited because its raspy). She's already smiling and can recognize voices and coos and trys to talk to you in her own way. I call her the diva.
My name is Ayanna Coleman(Noelle). My daughter Nasaya(pronounced like messiah//means Miracle of God) was diagnosed by an amnio in Oct 2008. She was born on March 23 2009 weighing 9lbs 15oz. So far she's suffering from a arched palate(mild arch),and mild hypotonia(she can get floppy for a brief second then her tone kicks in and a little contracture for briefly then she normalizes)and a floppy airway(my husband and parents are scared by her breathing when she gets excited because its raspy). She's already smiling and can recognize voices and coos and trys to talk to you in her own way. I call her the diva.
Latest Activity
Would really like 2 attend as well.....will b working hard on it.
PKS Kids Face2Face 2010 at Mount Laurel Marriot and Coco Key Water Park, NJ
June 24, 2010 at 6pm to June 27, 2010 at 12pm
Planning for our 3rd medical conference is underway right now. Although this is just to get us started (more emails and registration requests will be coming), please use the RSVP here to let us know if you're thinking of attending.
Please watch N...
I hope the little princess is feeling better! you handled the situation sooo well. Ive seen two siezures in my life time and both times freaked out ( i was 8 for first one( a man at church) and 13 when i saw my little cousin who was 5 then have on...
Glad you're home and everything is better.
Oh how horrible for you all - hope that Nasays is well again x
That sounds AWFUL! I hate that you weren't someplace you knew and trusted. I also hope that Nasaya is feeling better, poor thing :(
This weekend I took Nasaya out of town to my hubby's hometown to meet her GreatGrandmother......spending the nite at my sis-n-laws house @ 2am Nasaya woke up wit a fever and I couldnt check her temp bcause I left most of my stuff at home....Luckil...
Glad 2 hear everything is well......Praying changes everything///will send some up for Shelby and you for November........Smooooches to Shelby.
Look at that big girl!
Noelle & Nasaya Coleman's Blog
Fever, Bronchitis, & Seizures OH!!!MY!!!!! I betcha Nasaya is scared of Columbus County Hospital in Whiteville NC now.
This weekend I took Nasaya out of town to my hubby's hometown to meet her GreatGrandmother......spending the nite at my sis-n-laws house @ 2am Nasaya woke up wit a fever and I couldnt check her temp bcause I left most of my stuff at home....Luckily my sis-n-law had some motrin and I said I will run in the morning to get what she needs at the store.....well the motrin got the fever down enuff to get her thru the rest of the nite but she was very restless......@ 7am normal wake up time for breakfa… Continue
Posted on October 5, 2009 at 10:58pm — 4 Comments
Nasaya's gonna be 6mths old on Wed 9/23/2009
Time is definetely going by fast, I cannot believe Nasaya is going to be 6 mths old this week.....keeping "ya'll" updated on her progress....she's going through PT and she's already pushing up with her own muscles and popping up on her knees like she wants to crawl(YAY) she catches on very quickly and we can see her determination....she has to build up her muscles because her tone is still way too low....looking at her arms looks like some old persons arm with hardly any muscles in it. Her 2nd s… Continue
Posted on September 22, 2009 at 1:19am —
Up to date
Well as u can c Nasaya had PT evaluation on Monday......Wednesday she had a Bronchoscopy done to c y her breathing is sooo loud and raspy.....She has (forgive the spelling)Laryngo Malacia in which the flaps that cover her airway above her vocal cords are profoundly floppy. They're supposed 2 b out of the way when she's not eating or drinking but the 2 smaller flaps that fold down first (when u get ready to eat or drink), the two little flaps, they are curved down in her airway all the time so sh… Continue
Posted on August 15, 2009 at 9:07am — 4 Comments
Physical Therapy Evaluation 2day
We had our physical therapy evaluation 2day and they pointed out things I never noticed....she has one leg longer than the other so we have to add another "ist" as in specialist to the list, her ring fingers on both hands r the same size as her middle finger(sorry find that one very funny never noticed that lol) and she uses her left side a lot more than the right....ah well another day another dollar......looking forward to this challenge because everythings possible with Nasaya so that's just… Continue
Posted on August 11, 2009 at 4:04am — 3 Comments
Pulminologist appt
We saw her Pulminologist Tue.....things went well...she has a runny nose & a little cough so now congestion sounds exactly like what she's been doing since she's been born but he knows..he listened 2 her then explained in more detail y she's breathing that way....h.s. science 101 duh(the flap that covers our airway when we drink & etc is moving all the time instead of just briefly) but he wants 2 make sure. He's gonna do a bronchoscopy on Aug. 12 & explore her airway....she has 2 sta… Continue
Posted on July 30, 2009 at 9:14am — 3 Comments
Comment Wall (22 comments)
- At 9:45am on November 13, 2009,
Kelsey/ cammie said…
- Hello Noelle
Just a update on the 2010 Medical Conference for families with PKS Kids. This year the board has come up with a way to help families meet the financial need for attending the conference. If you are interested in attending and have questions on how this works please contact me at cammie_gray@hotmail.com
Everything will be keep confidential
- At 4:29pm on October 10, 2009,
Luis, Speshelle, Kennedy and Zoe said…
- they tell me zoe is getting out the way but im not listening lol. Kennedy and Zoe are too close in age if u ask me.
I read your blog and Hope Nasaya is doing better
- At 5:54pm on October 5, 2009,
Luis, Speshelle, Kennedy and Zoe said…
- Im loving the pics of Nasaya sitting up..pretty soon you are not going to be able to contain her lol..hope everything is baby proofed
- At 10:22pm on September 11, 2009,
Luis, Speshelle, Kennedy and Zoe said…
- Nasaya is getting soo big>> I havent been on from my comp in forever to look at the pics OMG she is a big girl now...As for Kenny and her new Big sister status she is really growing it well..Im so proud of her she is making more progress with her standing ans such..she is paying Zoe more attn now..Still laughing at her when she is having a melt down. She is even "talking" to her.. I love these lil girls but I think im going grey at 23!
- At 8:03pm on September 8, 2009,
Melody said… - I'm glad my story helped. I just don't like the way doctors always seem so pessimestic and only give you the bad information... :-| Anyway, glad to hear you are doing well :-)
- At 8:15pm on August 30, 2009,
Gita Pinto said…
- Thanks, glad you got to look at her pics. I also looked at your daughter's, she's cute too. I was amazed to see that she smiles and holds herself up quite well when on her stomach already. At 8 months, Francesca is still unable to push herself up with her arms while on her belly. She has very weak muscle tone in her upper body. I'm off to give her a bath but, I'll write more soon. Glad we can chat, I'm new to this too and it has been full of ups and downs. It'll be nice to support each other, talk soon.
- At 1:26pm on August 19, 2009,
Christine (Airyn) said… - Airyn still isn't "eating". She licks foods. She used to swallow foods but something happened. She does drink though.
Glad her swallow study went well. Airyn's last study showed that she pools liquids after a few sucks then swallows. No danger of aspirating though. Aren't those studies cool to watch? LOL (Too much time in the hospitals...getting to me haha!!)
- At 2:17pm on August 5, 2009,
Luis, Speshelle, Kennedy and Zoe said…
- Lol..Kennedy is probably tired of hearing I love you.. i say it after everything lol..Now when my aunty says "Kennedy I love you" she usually tries to say it..but i think she is just trying to mimic the sound..She does that when i say hello..she just answers back saying " ello" yeah without the H....Lol..These kids amaze me all the time..Keep up the good work Nasaya is obviously getting plenty stimulation if she is babbling..lol Kennys is a little old lady and is always listening to my convos..
- At 8:45am on July 28, 2009,
Abby Westover said… - hi, i just have to say that Nasaya is absolutely gorgeous! Love the pierced ears! Gracie turned 5 in march and is doing very well from what we were told in the very beginning! she has been a miracle all the way and with God's grace we have made it through everything. Gracie is working on trying to sit and put weight through her legs while in her walker or stander. she makes small improvements all the time. gracie doesn't talk, but she lets us know what she wants! what does nasaya do...is she sitting,etc? would love to hear more about her.
- At 3:52pm on July 10, 2009,
Alexander (Mommy=Blanca) said… - Hi, well honestly, i don't have a problem with the nose stud but she is going to have to convince her Dad. She's really a great young lady so i don't see this leading to any other piercings, etc (she's 18, she didn't have to ask or tell us but she respects us enough to (or fears us enough--not sure which...lol..)).
Alex is doing great other than a terrible sleep pattern he has started in the last few weeks. I think he is trying to keep to the same schedule as his sisters now that they are home for the summer---up all night, sleep all day. It's getting better. I love hearing about Nasaya's progress, she is a cutie...
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