|
All About Emma
Welcome to Emma's website. We have created this to help everyone stay up-to-date with Emma & her many journeys.
Emma has a smile that melts your heart. She's very shy...but if you give her time, she'll flash you the cutest smile! She is a tough little chickie...in fact, her sister's nickname for her is "Little Tough." We don't know where Madi got that name for her, but it surely fits Emma!!
Emma has been through quite a bit, and continues to come out stronger after each hurdle & amazes everyone! She has come so far, and has done so much quicker than anyone ever imagined. She still faces physical health problems, growth issues, and developmental disabilities—and we continue to face each challenge with great hope. Our greatest desire for Emma in her life is to be happy. We strive every day for that.
We keep this website up to inform all of our friends & family on Emma and how she (& our family) is doing. We’ve also come to know many other families through this site, and we are so grateful for their kindness & friendship. We hope that, in addition to updating family & friends, we are able to educate and inform others. We, as a family, have changed a lot over these past 3 years. Our wish is that others may be touched by what we have learned, and will join us as we strive for acceptance of children and people, regardless of their diagnosis, disability, or other differences. Underneath all the labels, behaviors, and health issues, our daughter is a just that—our daughter. And, on some days, she’d even say she’s a princess too!
To learn all about Emma's journey so far, click here.
We have gathered some links here which may be helpful as you read Emma’s page. For more information, please click:
Static Encephalopathy, Autism, Sensory Processing Disorder, Speech Apraxia, PDD, and Seizures.
Also, we use these acronyms:
ST=Speech Therapy, OT=Occupational Therapy or SI=Sensory Integration, PT=Physical Therapy, SPD=Sensory Processing Disorder
And,
“Tubie” & “mickey” are the words we use for Emma’s feeding tube & gbutton.
Check out Emma's adorable quilt!
Emma Byrne
Born: May 12, 2004 Weight: 6 lbs, 6 oz Length: 18 inches 
Remember that happiness is a way of travel - not a destination.
R.M. Goodman
*HUGS* TOTAL!
give Emma more *HUGS*
Get hugs of your own
Please visit Eli’s Angels
Please say a prayer today for the many children & families affected by metabolic & mitochondrial disorders. Some of our dearest friends that we have made on this journey battle these disorders everyday.
Please visit my buddy, Caden!
A dream is a wish your heart makes when you're fast asleep. In dreams you will lose your heartaches. Whatever you wish for, you keep. Have faith in your dreams, and someday, your rainbow will come smiling through.
~ Cinderella
Thank you to all our family & friends for their continued support & prayers. We appreciate all you do, & the love you've shown to our Emma & Madison more than words could ever express. From the bottom of our hearts, thank you!  These are a few of my favorite things:    Emma’s theme song…and a few others we enjoy!
Click to play!
Who's to say
What's impossible
Well they forgot
This world keeps spinning
And with each new day
I can feel a change in everything
And as the surface breaks reflections fade
But in some ways they remain the same
And as my mind begins to spread its wings
There's no stopping curiosity
I want to turn the whole thing upside down
I'll find the things they say just can't be found
I'll share this love I find with everyone
We'll sing and dance to Mother Nature's songs
I don't want this feeling to go away
Who's to say
I can't do everything
Well I can try
And as I roll along I begin to find
Things aren't always just what they seem
I want to turn the whole thing upside down
I'll find the things they say just can't be found
I'll share this love I find with everyone
We'll sing and dance to Mother Nature's songs
This world keeps spinning and there's no time to waste
Well it all keeps spinning spinning round and round and
Upside down
Who's to say what's impossible and can't be found
I don't want this feeling to go away...
Please sign our guestbook!
Journal
Friday, August 1, 2008 5:40 PM CDT Hi all. Thank you, Jo (Hannah's mom) for bringing those nasty spam guestbook entries to my attention. I will contact CaringBridge to see what they can do about that. Sorry everyone!
Well, things here are going well. We had a wonderful vacation--the girls saw and did SO much. A ride in a FDNY firetruck (and visit with the firefighters), a Yankees game, Central Park, Empire State building, museums, and more. In New Jersey, we saw all the cousins on my side, and they had a blast at Nanny & Grandpa's. We also went to the beach, the Crayola factory, and lots of other fun things. I was able to meet up with friends I hadn't seen in years, some since high school!
The transition to Keppra has gone wonderfully! No seizures (YEY!!!!) and, as an unexpected bonus, a cloud seems to have been lifted from our Emma. She is more alert, even more social, and comes out with these amazing things now. Neuro said the trileptal very well could have been "dulling" her. We are so welcome with this change. She's so much "with us," it's terrific!!!
We are all getting ready for school, 3 more weeks! Emma can't wait, Madi too. Emma will still be half-day, but afternoons, with same teacher and most of the same students. I'm excited to see all the girls will do and learn this year.
We saw the neurologist this week, and he is concerned about Emma's lack of progress in potty training. She still wears diapers, shows no signs of readiness (she does not: wake up dry, hide when going, squat, etc.). She will be standing next to me, playing, and I realize she's passed a bowel movement--only because of the smell. He is concerned that it is something neurological (possibly a spinal lesion) or anatomical (especially with her history of urological and gastrointestinal issues). So, he was making phone calls this week, brainstorming and planning with our pediatrician, a new urologist, and our GI doctor. We should hear back next week what the plan is. She'll need some new tests, to see the function of her bowels, kidneys, etc. And, depending on what they all decide, an MRI to rule out a lesion or other spinal/neurological problem. This came out of left field, and seeing how concerned he was, really stressed me out. Anyone whose had a sick or special needs child knows that when doctors have a conference about your child--it's just not what you want to hear. But, I am glad they are all working together for Emma, and I know she's so strong, it will all be okay.
I will keep updating here on that & on the new blog...
http://themarkhams.blogspot.com/
(if you want to leave a message their, since there's no real guestbook, just click on "comment" at the end of an entry).
Read Journal History
Links: http://www.autismarts.com/index.html Autism Arts
www.plotkindesigns.com/tynietoes Tynie Toes by Plotkin Designs
www.eparent.com Exceptional Parent--lots of great info & resources
|
|
