Oh the specialists you will see

Neurologist- that one is a given, he gave us our diagnosis and continues to see Evan for follow up and regarding his sleep issues.

GI- Evan has reflux so we see the GI dr. and he is on reflux meds

Opthamologist- This is mainly for follow up and to keep a check on Evan's vision. So far it is fine.

Pulmonologist- Evan has asthma and is a risk for aspiration which can cause pnuemonia so he see the pulmonologist for these reasons.

Orthopedic- We see Dr. Hart at Shriner's to deal with Evan's spasticity and we do Botox injections and serial casting to manage this.

Entering the World of Therapy

Evan started physical therapy in August 05 and Occupational therapy in September of 2005, he saw each therapist on an alternating week basis. They both wanted to see him at least once a week but did not have enough room. We saw them at Sutter Memorial hospital, and in physical therapy Evan was working on transitioning from sitting to all fours and almost a year after starting he was sitting independently and transistioning and he began to crawl on all fours at about 14 months, it was so exciting. Evan started in October 06 with CCS and this is where he used his first walker and began to take independent steps at around age 2 1/2.

In OT he was just working on fine motor skills but his left had is so affected that this is something we are still working on.

Speech - Evan started speech at 1year old. He was with the same therapist until he was 3 years old and transistioned to the school district. He will most likely never have a functional speech and we have acquired a Dynavox communication device for him. He is slowly learning to use it. Speech at the school district started at age three and he also had speech with his feeding therapist as well.

Feeding Therapy- Evan had a modified barium swallow and was considered a moderate risk for aspiration so we started feeding therapy and discovered just how far behind he was in oral motor skills. We were lucky enough to have the school district approve feeding therapy as well so Evan has had the most awesome feeding therapist since March of 2006.

Warm Water - We also started warm water therapy in March of 2006 and we had the best therapist for most of our time there. Evan loved warm water therapy and he to this day prefers warm water for swimming instead of just regular temp water.

Music Therapy- We did music therapy for a year and evan liked it but had some issues with the early morning appt.

In the prime of Evan's therapy we had 6 different therapies every week. All of this changed when he transistioned to the school district.

What is Bilateral Perisylvan Polymicrogyria

This is a description of the brain malformation that Evan has. This is what causes all of his issues, sometime during his development inutero he had neuromigration problems and the pmg is what resulted. This description really fits Evan's characteristics but I think his speech is worse, he has more than just a speech impediment, he does not say any words, he is unable to get the message from his brain to his muscles to produce the right position to make sounds.



Bilateral Perisylvian PMG (BPP) Also called Cogenital Bilateral Perisylvan Syndrome
The sylvian fissure is a feature found on either side of a normal brain. In BPP there are areas of polymicrogyria around these fissures. Of all the PMG conditions, this type appears most commonly.
Individuals with BPP may have learning difficulties, cerebral palsy, and seizures. What is more distinctive about this condition is that individuals often have problems using the muscles of the face, throat, jaws and tongue – when this is mild it may lead to just a speech impediment or a tendency to drool but if more severe it can lead to difficulties with feeding as a baby.

This really describes Evan well.

Evan's Story-The beginning

We decided that it was time for us to add another child to our family. Gabriel was 3yrs old when I found out I was pregnant with Evan. Cynthia was 12years old. We found out in February 2004 that we were expecting again. I was of courese nervous since I had the miscarriage in my first pregnancy. Everything was fine expect for the fact that my asthma seemed to by aggravated early on, which was different from my pregnancy with Gabriel. It seemed I kept getting chest colds and having asthma problems. I was in the hospital when I was about 7 months pregnant, I was there for about 4 days. I honestly think they kept me mostly because I was pregnant. My oxygen levels were always good and evan's heartbeat was always great as well.

Here is our sweet little boy about 2 weeks before he was born.

Evan was born on October 22, 2004 at 4:33 am, he was 10lbs 9oz and 19 1/2 inches long. My labor was quick about 6 hours in all. Evan had meconium staining in the amniotic fluid and was a little off color when he was born but for the most part the labor was quick and uneventful. Evan came home 1 day later and did well for the first couple months of his life. He had his first ear infection at 7 weeks old and what seemed like continuous colds and respiratory problems in that first winter.

Evan met milestones such as holding his head up on time, he did roll over but only one way and did not do a complete roll until he was probably close to 2 years old. I had a feeling something was wrong when we noticed that he did not use his left hand much. I mentioned it to his Dr. at his 6 month check up. She gave me the whole speech about how every baby develops differently and not too worry. I left the office thinking maybe I was wrong and he would just do things at the end of the spectrum where Gabriel did it at the beginning of the spectrum. Well I had an opportunity to see a friends baby who is 3 months younger than Evan. Evan was 8 months and she was 5 months, there was really no difference between them developmentally, he was not sitting crawling or pulling to stand. So when I handed this baby a toy and she reached for it with both hands I just felt my heart sink because I knew something was wrong with Evan. So I made an appt with his pediatrician to address this issue again. She looked at Evan and said that she would refer us to a neurologist, and physical therapy and she suspected he had a brachial plexus nerve injury in his shoulder.

So on July 22, 2005 was the day our lives changed forever for the first time. We saw Dr. Asaikar and he diagnosed Evan as having a left hemiparesis which is a mild form of cerebral palsy, he stated that he probably had a stroke either in utero or at birth and doing an MRI could tell when it happened etc. Great we had an answer and it was not a life threatening condition. The Dr. was very positive with us and said Evan would basically be like other kids but his movements would be less smooth. Boy that was not totally wrong but it just did not prepare us at all for what was ahead.

So on August 10 we had his MRI and EEG done. On August 19th we had the follow up with Dr. Asaikar and he had a different diagnosis for us than what we had thought. Evan has a brain malformation called Bilateral Perisylvan Polymicrogyria and that is what caused his Cerebral Palsy. Dr. Asaikar said he was a little more worried now. He did not really give us a prognosis but that is good because I do not think he could really say what Evan would and would not do, he stated that if he had seen the MRI before Evan he would have expected to see a severely mentally retarted child. Evan is a miracle because he is defying what his brain says he should be doing.