For those of you who don’t know we are in New York to do an intensive block of physical therapy with Jonathan Orgel starting on Sunday. He one of ten PT's in the world trained in CME treatment (Cuveas Medek Exercises). I have a really good feeling that this will work for Seamus, but i have to admit I'm getting a bit nervous about watching my baby get tossed around.
I don't think they will start with this exercise :)
I will post videos and blogs about treatment as it happens, but until then we are just going to relax and have some fun!
Seamus did very well on the plane! He barely napped on the way here, but was in a great mood almost all day. He made lots of friends (per usual) on the plane, and at the hotel. I think he was excited to go explore (i.e. wouldn’t sleep), so we went for a walk around the neighborhood, then up to the roof to see the view. I’ll have to post some pictures later today.
Anyway, Seamus and I LOVE it here! We are staying in the Greenpoint/Williamsburg area of Brooklyn, which has a great view of Manhattan. It is just the best neighborhood; everyone is way friendlier than I expected, and everywhere we have been so far seems family oriented. My Aunt Joan (really my mom’s best friend) met us up here last night and we hope to venture over to Manhattan in a bit.
We will have more family and friends here this week, including my sister Elizabeth (aka aunt Izzie). I so can’t wait until you see this place; sooooooooo your kind of town <3
Friday, January 15, 2010
Tuesday, January 5, 2010
Opportunity Enterprises
I work with adults who have various developmental issues. The company is called Opportunity Enterprises; they do great things in our community. Shappy sees a few theraipst from their early intervention program. Here is a video about their history:
25 Things About Me!
I copied this from my facebook. it was a a wile ago so i've made a few adjustments:
1. lighting is very important to me. it has a big affect on my mood.
2. unlike a lot of people my age, I have never wanted to go to las vegas.
3. I have been apart from most of the people I love for most of my life.
4. I will graduate sometime between july and december with a degree in English which is ironic because i have always hated white people :)
- that has since changed; just graduated last month
and jk i am white, duh.
5. My favorite food is soup. followed by coffee.
6. Shappy is the best thing that ever happened to me.
7. Besides provide for my family I have NO idea what i want to do with my life.
8. I LOVE beards.
9. I don't have time to do the things I love the most like shower, talk to my family, write, shop, cuddle, exercise, see my friends, cook, listening to music, facebook, read, bake, take pictures of shappy...
-I'm deterined to change this!
10. A perfect day for me would involve lots of HGTV, stand up comedy, cuddling, and mexican food.
-and hammocks
11. The closer I get to graduation the more i realize that i am not college material...
-meh...
12. I love to travel. Not only is driving is one of my favorite things ever, but also by plane, train, ect ....i love the feeling of being carried far away.
13. I can't wait to buy/own/decorate my own house.
14. i enjoy the oprah show way too much.
15. I just started my job at oe and i love it.
-still do!
16. I don't trust anyone. Its a problem.
17. I hope to move to chicago soon.
-not so sure about this one anymore...even though chicago is my soulmate <3
18. i wish i was more responsible, dependable, ect.
- I am now :)
19. I love being a mom.
20. I am a new aunt to Silias!
21. I am the female larry david...I have a talent for pissing people off :)
22. one of my favorite things in life is when you finally fully understand why a cliche is a cliche because you are froced to live through it.
23. what hasn't killed me has made me stronger.
24. I like to learn my own lessons/be independent and i hate being told what to do.
25. I want to learn to garden! haha
1. lighting is very important to me. it has a big affect on my mood.
2. unlike a lot of people my age, I have never wanted to go to las vegas.
3. I have been apart from most of the people I love for most of my life.
4. I will graduate sometime between july and december with a degree in English which is ironic because i have always hated white people :)
- that has since changed; just graduated last month
and jk i am white, duh.
5. My favorite food is soup. followed by coffee.
6. Shappy is the best thing that ever happened to me.
7. Besides provide for my family I have NO idea what i want to do with my life.
8. I LOVE beards.
9. I don't have time to do the things I love the most like shower, talk to my family, write, shop, cuddle, exercise, see my friends, cook, listening to music, facebook, read, bake, take pictures of shappy...
-I'm deterined to change this!
10. A perfect day for me would involve lots of HGTV, stand up comedy, cuddling, and mexican food.
-and hammocks
11. The closer I get to graduation the more i realize that i am not college material...
-meh...
12. I love to travel. Not only is driving is one of my favorite things ever, but also by plane, train, ect ....i love the feeling of being carried far away.
13. I can't wait to buy/own/decorate my own house.
14. i enjoy the oprah show way too much.
15. I just started my job at oe and i love it.
-still do!
16. I don't trust anyone. Its a problem.
17. I hope to move to chicago soon.
-not so sure about this one anymore...even though chicago is my soulmate <3
18. i wish i was more responsible, dependable, ect.
- I am now :)
19. I love being a mom.
20. I am a new aunt to Silias!
21. I am the female larry david...I have a talent for pissing people off :)
22. one of my favorite things in life is when you finally fully understand why a cliche is a cliche because you are froced to live through it.
23. what hasn't killed me has made me stronger.
24. I like to learn my own lessons/be independent and i hate being told what to do.
25. I want to learn to garden! haha
Public Expression of Positivity
For my first post I want to publicly vow to only write about positive topics. This blog will be an expression of faith, and to share all of the amazing changes that have (and will continue to) take(n) place! That said…
Seamus is much healthier than his diagnosis would suggest! Thank God!!!
Since this is my first post I thought I would start by giving some info on Seamus’ condition.
Shappy’s Diagnosis’:
1. Bilateral open lip schizencephaly (involving parietal lobes)
-“Batman-like” configuration
2. Semilobar holoprosencephaly
3. Absence of septum pellucidum
4. Digenesis of the corpus callosum
5. Normal interhemisphereic fissure anterior and posterior
6. Corpus callosum thinned
-Hyplasia of vostum
-Hyplasia of part of splenium
7. Periventricular calcifications
Migration disorders
1. Pachygyria
2. Polymicrgyria
Also noted
• Reduced white matter volume
• Normal paired thalami and basal ganglia
• Normal posterior fossa, brainstem, cerebellum
• Mildly dilated third ventricle
• Normal fourth ventricle
• No mass effect or middle shift
All in all…
He has a congenital brain malformation and cerebral palsy- that’s the jist of it. He struggles with developmental delays, hypertonicity and food allergies, but that’s all. It could be so much worse and I am so thankful that he has been the exception to the rule! All of his therapists agree that his intelligence does not appear to have been affected! Please pray for more good news.
Lastly I would like to send a shout out to Seamus’ pop pop Bill Reach(my dad) for all the help he gives us on a daily basis, and for currently filling the house with smells of pizzelles.
Seamus is much healthier than his diagnosis would suggest! Thank God!!!
Since this is my first post I thought I would start by giving some info on Seamus’ condition.
Shappy’s Diagnosis’:
1. Bilateral open lip schizencephaly (involving parietal lobes)
-“Batman-like” configuration
2. Semilobar holoprosencephaly
3. Absence of septum pellucidum
4. Digenesis of the corpus callosum
5. Normal interhemisphereic fissure anterior and posterior
6. Corpus callosum thinned
-Hyplasia of vostum
-Hyplasia of part of splenium
7. Periventricular calcifications
Migration disorders
1. Pachygyria
2. Polymicrgyria
Also noted
• Reduced white matter volume
• Normal paired thalami and basal ganglia
• Normal posterior fossa, brainstem, cerebellum
• Mildly dilated third ventricle
• Normal fourth ventricle
• No mass effect or middle shift
All in all…
He has a congenital brain malformation and cerebral palsy- that’s the jist of it. He struggles with developmental delays, hypertonicity and food allergies, but that’s all. It could be so much worse and I am so thankful that he has been the exception to the rule! All of his therapists agree that his intelligence does not appear to have been affected! Please pray for more good news.
Lastly I would like to send a shout out to Seamus’ pop pop Bill Reach(my dad) for all the help he gives us on a daily basis, and for currently filling the house with smells of pizzelles.
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