Scooting on my couch with a new hair cut

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.

Christmas Cookies

Helping Micah is helping me!

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

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

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

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

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

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.

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