Micah Lee Rock & Family Blog

Church today & was loving it!

2010-11-14T14:33:00.000-08:00

How Glen Doman Started Helping Brain Injured Children

2010-10-30T17:18:00.000-07:00

Glenn Doman: Children are Linguistic Geniuses!

2010-10-30T16:07:00.000-07:00

Philadelphia March 8 2010

2010-03-10T05:02:00.000-08:00

Hi Guys,

We are back in Philadelphia this week. March 8 - 13th

This is me at the Optometrist appointment.

I saw many familiar faces,
Anna from London and Petros from Greece

Tuesday and Wednesday I stayed at the apartment with Grandma and Scott, while my mom attended lectures. Thursday and Friday we go back to the Institute to get my new program for the next six months.
-----------------------------
I am now reading at above High School level, can speed read faster than my mom can turn the pages. They think I am pretty smart I suppose that's kinda cool. My mom is going to look into MIT and Harvard college study information on line so I don't get bored. I am starting my program soon as we get settled into our new place. I will be doing leg patterning and a few other therapies. I grew taller and gained a little weight. I am supposed to work my way up to eating everything 75% from my mouth and I am excited about that. Eating is hard for me, I am just not sure how to work my tounge and everything. It sure is fun trying though! Shhhh ( I had pancakes the other night) Yummy! Mom is getting a recipe so I can have them more often.

Thanks for looking guys! I will see you soon! - Love Micah

Philadelphia August 22 -- 29th 2009

2009-08-27T04:35:00.001-07:00

Hi guys,

The plane trip was great. The flight here was at night, the skys were pitch black and all the lights lit up the sky. I was good on the plane because I like to watch everything, it keeps me very busy.

Monday Morning August 24th 2009,

This was our first day at the institute and first stop is the optometrist. Thats me and my grams on top - great picture mom! First off I met a new friend Anna, she is from the U.K. she is one of a twin. She is so beautiful, she said hi to me with facilitated communication, I was excited because it showed me how easy it was to use FC to communicate with people. Then while we were waiting for the doctor to come in we saw Calem, he is another friend I met last trip, he is from

La Verne California.

First they checked to see how my eyes were. Last time my left eye was weaker than my right.. This time my left eye was considerably better so they said I probably won't need to be wearing my patch on my right eye anymore during the day. So we are taking these results back to the institute, I can't wait to see Anna and all my friends again.

Monday afternoon.

We all wait in the big room at the institute for our turn to do our different activities. We were called in by Kathy for our history and evaluation. I am pretty excited because mom got the green light to start facilitated communication with me. Kathy asked me a few questions with it, Grandma Cary cried when she watched me point to the letters to form the word I wanted to communicate! I guess I am ready for it. So much to learn! Now with practice I can tell mom what I want and what I am interested in learning.

Results of the evaluation: I am reading independently at a 9 year old level. My developmental age is 21 months (only 15 months behind). I received an understanding victory! I love it guys!

I will post more later, this is so exciting.. We get to learn my new program today.

Tuesday and Wednesday I spent the day with Grams, we went for walks and read books.

Thursday

Today we learned my new program - it is very detailed so I will try to summarize all of the information.

Since I am reading at a nine year old level and my program instructor this time Kathy Myers has established that I can read regular book print which is great because mom was making all of my books herself.

I get to read all of my own educational material independently now. Today Kathy let me read a page of a Junior High School Algebra book indepently. It was about Pythagorean Theorem which I had never heard about. I scanned the page and then she asked me to tell her the Theorem I had just read about and I spelled it on my FC board. Mom and Grams were just beside themselves, I could see them covering their faces so I could not see. Later I heard mom telling someone she was so amazed she couldn't help but giggle and she didn't want to distract me. I love it all and I have been so happy this week, because this means so much to me. This has given me a way to communicate with my family.

I will write more later I am tired...

Back To Philadelphia week of August 24th!

2009-06-19T18:40:00.000-07:00

Hi Guys!

I am getting my lab work done and getting my muscles toned to go back to Philadelphia soon.. Next trip is planned for Week of August 24th 2009! I am excited I get to see all the friends I have met there and I am so healthy right now I am pumped!

Mom is teaching me stuff! I am so smart you have no idea! Just ask me stuff!

People think because I can't talk it doesn't mean I don't know how to communicate.. You just need to learn how! I anwer Mom and Grandma Cary all the time! Just need to know how to ask!

I had my first cousin Reece arrive in April and she is so beautiful.. At first I was so jeolous because everyone loved her so much and her legs moved and mine didn't... I told mom I didn't like her! But when my mom asked me again later I decided I liked her. She is truly beautiful and it isn't her fault my legs don't move and she is so pretty how can I not like her.. Plus I am going to get my own legs to move because I need to protect her.. She crys alot! I kinda laugh at her like Baby Reece why are you crying Don't be afraid I will protect you.. sshhhh...... and I smile!

Philadelphia March 7th - 14th 2009

2009-03-12T14:55:00.000-07:00

I am in Philadelphia right now.

I have been sort of grumpy for a few months because I kept throwing up all my food and stuff.
But my mom worked real hard at finding a new diet for me. I will explain that later because that's alot of words.

I have been in Philadelphia since Saturday with mom, dad and Grams (Grandma Cary) and by Wednesday I was smiling like the old me.
Grams took me to the book store and got a book because I was a good boy and I took my nap. Yep she just told me if you are good boy and take a nap we will go for a walk and then to the bookstore. I decided it is better to just cooperate and get the book, it is frustrating for me. I have all these words and thoughts inside my head, but I don't have any way of getting them out. Mom decided that she will start back giving me my choice board that way it will be much easier for me to communicate. I can breathe good, but it takes alot of breathe and energy to point to that choice board, but I am gonna keep on trying.
I was so proud of myself I was given two seven step math equations the first day at the Institute and I got both answers correct. That was great, I like making everyone proud.
I got two story questions correct too! Gotcha guys! I am gonna be really really smart one day.. Ha ha, go go Micah.... Well I will show you all my new stuff when I get back thats all for now.. - Micah Lee -

Out for a walk

2008-10-01T15:21:00.000-07:00

Hi guys, just out for a walk with my mom. I was in the hospital all last week, it is okay my mom was with me and Grandma Cary & dad visited me every day so it was fun. Now I am home feeling much better. The doctors said I was dehydrated.. I know the real reason was that one of my doctors prescribed formula that was too concentrated for my weight.. Hmm.. those doctors.. you always have to check up on them, oh and plus I kept throwing it up- maybe I was a little sick too. They put my feeding tube back in for a while. It is a good thing too, that way I can concentrate on getting very big muscles and doing therapy and stuff. I still eat, but I don't get so worried anymore because sometimes I just get tired.

Respiratory Patterning

2008-01-26T15:06:00.000-08:00

This is me falling asleep while Mom and Grandma Cary do my respiratory patterning, it makes me feel so relaxed! I didn't like it at first but now I love it!

It's helping me learn how to breathe better!

Scooting on my couch with a new hair cut

2007-12-28T17:18:00.000-08:00

This is kind of different I scooted all the way down my couch!

Check out my new haircut - My Mom cut it with her new clippers she got for Christmas while Grandma held me. Now mom can keep my hair all cute and stuff! I think my hair cut makes my ears look kind of big! Oh well they are my ears got to love them. I hear lots of good stuff with them.

Helping Micah is helping me!

2007-12-26T20:57:00.000-08:00

My name is Cindy, and I am one of Micah's many volunteers. I met steph years back through micah's dad. I followed micah's story from day one and finally decided to help. I am so glad I did. My niece and I go together on tuesdays, and we are learning so much. Each time we go to pattern micah we are reminded of how blessed Micah is to have come thru this, how strong stephanie has been each and every day of micah's beautiful existance, and how lucky we are to be part of his recovery. We look forward to the day that micah can walk, and talk, and tell us exactly what that cute little mind is thinking....I have faith that that day will come.

Stephanie is so dedicated, and micah is progressing so well!

Sweet Micah

2007-12-12T22:39:00.000-08:00

My name is Ruth Rannis and I am one of the volunteers in helping Micah through his therapy. I was introduced to him by my friend Trina who I have known her family for years. I have been helping for the last few weeks with Micah and I am so impressed on his progress. He is such a joy to see every week. He is so sweet . I am so happy I can help Stephanie. I am also so impressed with her and how much dedication and determination she has and I admire how strong and loving she is. I thank Stephanie for allowing me to help with his patterning and Trina for introducing me to Micah's story. God Bless Micah and his family.
love
Ruth Rannis

Trina

2007-12-09T19:43:00.000-08:00

Hi! My name is Trina, and I'm one of Micah's many volunteers. I live in Ladera Ranch, and am the mom of eight kids. Our Big Happy Family

I just want to say that Micah is very special to me and has become a BIG part of my life. I look forward to Wednesdays because that is my patterning time with him! (if only we lived closer...I'd be there everyday to help!)

Patterning is very familiar to me because it's the same program that we did on our daughter, Audriana, back in 1997 after her brain injury. We did this for almost three years with her, so I think I can safely say that I am an expert patterner!

I admire Stephanie for taking on this very demanding, time-consuming intensive program. I truly think it is the hardest therapy to carry out, as it requires many, many hours a day to complete. Not many mothers are up for the committment it takes -- believe me, I've met many who turned down the chance to do this program on their child because they simply didn't think they could do it each and everyday. My heart goes out to those kids, because who knows how much they would have improved if given this chance? Micah is so very lucky to have a mom like Stephanie, and the support of her family to help.

I get so much joy from just holding Micah and hearing him make cooing sounds. I love to see him smile. I love when he throws his head back in excitement. I enjoy watching him interact with my kids when they come with me to pattern. And I love those fat feet of his :)

Micah is in my daily thoughts and prayers. I know God will heal Micah, I just don't know how long it will take. I do know that everyone is doing all that they can to give him the best chance in life. And I know that Micah has touched the lives of all those who have met him.

I love you Micah Lee... very much! God bless you, sweet boy! I'll see you on Wednesday!

Christmas 2007

2007-12-09T18:21:00.000-08:00

Hi Everybody I want to thank all the volunteers that have devoted their time to help Micah with his patterning schedule! I haven't met you all of you but the ones I have met are absolutely wonderful! I believe things happen for a reason and all of you are in Micah's life for a reason!

I am going to try to teach Stephanie how to do this blog so she can can keep you more up to date.

June 7, 2007 Beggining his patterning program

2007-06-07T14:31:00.000-07:00

Today Steph and Grandma Cary started Micah's patterning, after only one leg patterning session we can see a noticeable difference in his legs. So far today we have done 4 sessions. Stephanie just keeps saying Wow what a difference! We look at eachother with amazement. Micah has been completely relaxed all day. He cries during the sessions that are two minutes each session. However; as soon as you pick him up he is all done crying and calm. The only way I can explain the leg patterning, is to simulate a bicycle movement, where you are moving one leg at time. A little difficult to get the hang of at first, but it gets easier. ... to be continued

March 19 2007

2007-03-19T09:57:00.000-07:00

Today is Micah's last day for his steroid injections. He hasn't had any infantile spasms since Saturday February 10th, which was 4 days after his first injection. Stephanie and Chris both had to learn how to give the injections. WOW!

Chris (daddy) gave Micah his first haircut yesterday. He looks so cute with his little boy haircut.

I believe that everything in life happens for a reason, even though sometimes we do not know the reason at that very moment in our lives. There have been so many miracles in Micah's life so far and they just keep happening for this little boy.

He had an orthopedic appointment a couple of weeks ago for his legs and the specialist recommended that Micah have hip surgery within six months, which would also entail cutting some of his thigh muscles to release the tightness in his legs. He would also be braced after the surgery for 6 weeks. We were almost completely convinced that this would be the best thing for Micah to give him a fighting chance to crawl and walk eventually. Honestly Stephanie was going back and forth on the decision unsure if this would be best for Micah. She was playing telephone tag with the institutes for Achievement of Human Potential in Philadelphia - http://www.iahp.org/ for days leaving messages with the secretary about Micah's proposed surgery. Thursday she talked to someone at the Institute in detail about the surgery and all of the sudden a space was available for Micah in April 2007 to go to the institute with his parents. Wow what a blessing! For now any decision for surgery is on hold. God has big plans for this little boy. Stephanie continues to feed him a bottle daily, however he gets most of his milk through his feeding tube. He continues to suck a pacifier but has become lazy at sucking his bottle, unless he is really hungry. He eats rice cereal with no problem, we are excited to eventually introduce baby cereal into his daily routine. Micah continues to coo and smile. His developmental stage is about that of a 3 month old.

2007-02-07T10:56:00.000-08:00

Micah started having infantile spasms (seizures) at approximately 3 months. The neuroligist's attempts at trying to control them with phenobarbital hasn't been successful. A couple of weeks ago they added topamax in hopes of slowly weaning him off the phenobarbital and getting the seizures under control. Micah still continues to have seizures several times through the day and night. Yesterday at his Doctors appointment the Neurologist called in an order for steroids which will be injected twice daily. They wanted to exhaust all medications before giving him the steroids. I have read many success stories about the steroid treatment for the seizures. With the phenobarbital and topamax his brain is sedated which interferes with his stimulation treatments Stephanie performs. The steroids will not sedate him and there are no long term side affects associated with the steroids. This is all a little intimidating as Stephanie is expected to learn how to give him the steroid injections. Micah continues to coo and turn over from his stomach to his back on his own. His legs are a little looser, yet he does not bend them on his own. Baby Micah is an angel..

Please continue to pray for Micah for his little brain to be healed, for his sucking to improve and for these seizures to stop.

For those who want to read about Infantile spasms click on the link below.

http://www.neuro.wustl.edu/epilepsy/pediatric/articleInfantileSpasms.html

Grandma Cary's beginning logs of Micah's life...

2006-12-12T08:45:00.001-08:00

Born September 1, 2006 at Kaiser Permanente on Lakeview in Anaheim, California.

Day 1 - When I was born my heart stopped beating and I could not breathe on my own.. The doctors did an x-ray and found I had a collapsed lung. They removed the free air from my chest cavity and brought me back to life after at least 30 minutes. I was put on a breathing machine and have had a few seizures and I'm on on medicine for them, it makes me really sleepy.
Not sure why this happened? I do know I was perfectly fine when I was in my mothers tummy so warm and cozy. She took such good care of me in her tummy.

Day 4- I was transferred to Choc.. the nurses here are nice.. They gave my mom a little doll to get her smell all over it and then she gives it back to me. It makes me happy to smell my mommy. I love my mommy and daddy so much they come every day to visit me. I need to get better at breathing and stuff.. My mommy pumps milk for me.... The nice nurses are giving it to me through a tube in my nose.. I don't care how I get it because it's so yummy and It is going to make me so big and strong. I'm off the breathing machine now and have this silly mask on my face that's helping me breathe kinda on my own.. I do not like it. It makes my face all smushy and stuff. My Aunt Melanie called me a Hefalump she is so silly.
See there is a picture of my hand around my daddy's finger.

Day 10 - I had seizures tonight so bad that they had to give me 4 doses of medicine.

Day 13 - I got a little blood transfusion today I am still so sleepy from seizure medicine.

Day 17 - I got my mask taken off for the whole night and I have kept it off. My Grandma Terry brought me a radio so I can listen to soft Christian music. I love it, it makes me feel so special, when I grow up I am going to already know how to sing to God.

Day 18 - I am getting stronger and I tried sucking the doctors finger today.

Day 19 - I started sucking therapy today. It kinda tickled my tongue. But the therapist said I did a good job and it will just take a few tries. My mommy started physical therapy with me today so she can learn how to get me in shape. I am going to get so good at all this stuff. I love my mommy and Daddy! Today my mom said other people can hold me now because I am getting so strong. Grandma Cary, Aunt Melanie and Uncle Joshua held me today for the first time.

Day 20 - Grandma Terry and Grandpa Gary held me today, they turned my oxygen cannula down to almost room air, so they can take it off of me soon. The neurologist came to see me today and said WOW you look like a different baby! They took my oxygen cannula off some time during the night and the nurses take turns holding me all night long. I'm trying so hard to get big and strong to show everyone what I am made of! I am not alone when my Mommy and Daddy go home to sleep God has never left my side.

Day 21 - The therapist gave me 5 cc's through a bottle today and I love it. For now she is going to feed me.. What she doesn't realize is that God is with me and I am strong willed.. I will show her tomorrow...My Mommy and Daddy can't stop staring at me.....it's just me " Micah your little boy"

Day 22- I am kinda getting cranky and stuff from being in here so long, all the drugs are wearing off and I just want to go home with Mommy and Daddy

Day 23- I keep spitting up. You know all baby's spit up... I think they are feeding me too much.. I can't tell them when I am full and I get so frustrated because I just don't want so much milk.. My tummy is so little it can't hold that much.. Silly doctors...

Day 24- I miss my therapist she's teaching me really good stuff and she doesn't come on the weekend.

Day 25- Today I was so excited because my therapist was supposed to come, then some strange lady shows up.. I am like "who are you and what did you do with my scushy therapist? She tried to help me but I just wasn't comfortable.

Day 26- Today is my mommy's birthday and I wish I was home with her.. My therapist came today and I drank 10 cc's of milk from the bottle I was so excited. She is warm and scushy and she loves to help me with stuff!
September 26 HAPPY BIRTHDAY MOMMY!!! Your little boy Micah Lee Loves you xoxo

Day 27 - I got my feeding tube put in today, this is so they can make sure I am getting enough food when I go home. Mommy and Daddy and the Grandmas are going to take CPR class I think they are getting ready for me to come home soon Yippee!!

Day 28- I have a little fever today so the doctors are giving me medicine.

Day 29- I'm still taking my medicine and am getting better, my mom and dad are kinda sick too!

Day 30- The doctors are going to let me go home soon. They are ordering stuff for my mom and dad to take home to take care of me. I am excited about all of this. I can be with mommy and daddy always.

Day 31 - I am a month old today and my grandma's and grandpa's and my beautiful Aunt Laura came to visit me but I was sleeping. My silly Grandma Cary tried to wake me up, but mom said no.

Day 35- I went home tonight and cried all night long. My mom and dad think I am cute, so does everyone else.. I like to cry It makes me feel good.. gotta show everyone who's boss.. I have a little dog name Bowie he doesn't understand me, when I cry he barks and then we are both crying and barking. I only went home with the feeding pump nothing else..

Day 36- Everyone in the house is tired but me.. I'm trying to nurse on my momma but I just can't quite figure out how to do it. But I am going to keep trying because she loves me so much.

Day38- Grandma Cary made me drink from the bottle like my therapist and I decided I like it. I'm in a bad mood and stuff from being at the hospital but I like it at home. I have a new bed and new room it is so cozy. My dog Bowie loves me and he is kinda cute always trying to protect me and stuff.

Day 44- Mom and Grandma Cary decided I don't need to eat from my tube anymore because I like it better when I suck on my bottle. All day today I ate like a big boy. Mom's tired so Grandma Cary stayed home and helped today. I eat 50 cc's or more by myself every 2 to 3 hours. It makes me burp and stuff.

Day 45- Grandma Cary babysat me today while my dad took my mom to get her hair cut. My mom is so pretty I love her so much. I went for a ride in Grandma's car and she took me to lunch with Aunt Laura and Uncle Kory. I heard them say I was a such a good boy today. I am just Micah! I am so strong and I have to put up a fight all the time, it is what has kept me alive and I refuse to stop fighting... I am alive and I am loving it. It just feels good to feel the wind in my hair and fresh air in my lungs. When I got back home my grandpa Dave held me so tight,

Day 45- My mom is trying so hard to nurse me... I want too, but I just haven't figured it out yet.. I love my bottle though. Other than my feeding tube I am just a regular little baby. I do all kinds of fun stuff, like roll from my tummy to my back real fast in my cozy bed. I have this fun vibrating chair that makes sounds when I touch just the right spot. My Grandma Cary says I am very strong. She is just so silly always kissing on me. I like it I have never felt so loved as I do now that I am at home..

Day 57- WOW... My life just keeps getting better and better.. I am going with Mom and Dad to the Brain Institute in Philadelphia the first week in December 2006 so they can learn stuff to help me just in case I may need it in the future...

Day 84- I went to go meet my Great Uncle Danny and his family and I got to dress up in big boy clothes. Here is a picture with my Mom, cousin Kathryn and Aunt Melanie. I was so tired. I love my pacifier.. I've kinda been spitting up alot, I am not sure why but I just think my tummy is so full all the time. The doctors say I need to keep gaining weight.. I am trying I say, but it makes my tummy so full.

Day 88- Today I went to the doctor and I weigh 9.61 lbs. and am 21.5 inches long. Yahh I am growing up a little...