Change of Plans -Serial Casting instead of Botox 2/08

As many of you know today was the day Evan was scheduled
to get Botox in his left let/foot at Shriners. We were a little nervous about this due to the news story that came out on Friday. We decided to go in to the Dr. and ask him about it and go from there. We knew that we would most likely go ahead with the Botox because the benefit of Evan walking on his left foot flat is great, not doing so will likely cause long term affects in his hips and back. So we talked to the Dr. and he felt that it was ok to go ahead with the Botox and that the children who passed had received Botox but it was not certain that it was the cause of death but could have aggrivated an already ill child.
After the Dr. examined Evan he explained that Evan had a contracture which in our case means that he was not able to straighten Evan's leg and get his foot into neutral. (think 90 degree angle)The Dr. mentioned that there was a study done on children with contractures and using botox, serial casting or a combination of the two. The study showed that the serial casting alone brought a longer lasting and better affect than Botox alone or Botox combined with serial casting. So we decided to go ahead with the recommendation of the Dr. and do just the serial casting with the option of Botox at a later date if we were not getting desired results with the casting alone.

Botox Tomorrow 2-2008

Well tomorrow is the big day. Evan will get his first round of Botox in his left leg/foot. One one hand I am really excited to see how he does it would be great for him to walk on his flat foot on the left side and not be so tight. But I am nervous as this is a new thing and I do not know how he will handle it. Plus there was the big news story about Botox and some kids that have died. But Rudy and I talked about it and we feel that it is still ok to go ahead and do it. We are of course going to talk with the Dr. before hand. Evan will also be getting Botox on his left hand in May but he has to be sedated for that because it is a bit more painful and precise procedure. I think it would be really hard to keep his left hand still. Our appt starts tomorrow at 12:15 when we go to the motion lab and then we have the appt with the Dr. at 1pm. I really like the Dr. at Shriner's who is going to be doing this and I feel confident in his abilities. I of course will be taking pictures and posting those tomorrow or the next day.

Official Seizure Diagnosis 2-2008

Well, we got the official word from the neurologist that the episode that Evan had earlier in the month was definitley a seizure and when I voiced my suspicions about another possible episode this past thursday the Dr. decided we should put Evan on an anti seizure medication. So we will see how things go. I am really sad, angry, frustated and scared about entering the world of seizures. For me it is so unknown and now so many new things have cropped up for me to worry about. I hate that my sweet little boy has to go through this among all the other stuff he deals with. It just seems so unfair. I feel the same way about other kids I know who have special needs and seizures along with it.

First Seizure January 2008

Evan starts back to school tomorrow after being off for 4 weeks. I am so excited about this. We had a great visit with Dr. Hart at Shriner's, Evan will go on February 12th to get Botox injections in his leg and foot. Botox injections help paralyze the muscles in order to get more stretching and flexibility out of them. Very good for kids with spastic CP. One week after the injections Evan will get a walking cast on his foot and wear that for two weeks and then we will be re-evaluated and he may get another one and may not just depends how it all works out. After the botox and serial casting then Evan will be re-evaluated for a new pair of orthotics. In May we will go back to Shriner's and have botox injections in his hand and arm. I am also hoping to get a hand splint out of this as well.
On the same day as his Shriner's appt which was January 2nd, we believe that Evan had his first seizure. Now this is what is called an absence seizure so it is not the typical grand mal seizures that most people think of seizures as.
Here is what happened. Evan fell asleep on the way home from Shriner's so Rudy took him to the couch and laid with him there, they both fell asleep and Rudy woke up to Evan gagging, so Rudy sat Evan on the floor with a towel in front of him in case he vomitted. Rudy went to the bathroom and then ordered a pizza he then walked back into the living room and Evan was sitting in the same spot staring at the couch with his right hand out Rudy called his name and then picked him up, Evan was still staring and did not respond to his name or Rudy trying to turn his head to face him, this went on for about 30 seconds to one minute not to count the 5 or so minutes while Rudy was in the bathroom, Cynthia was watching Evan during this time and she said he was just staring at the couch. So the next hour Evan was basically doing three things crying, lethargic, gagging and laying on the couch or our shoulders. He did not want his milk, he did not want to eat his favorite food Pizza, nothing would console him.
I was holding him and he vomitted then we walked down the hall and I laid him in my bed and was asleep within 10 minutes, he then woke about 30 minutes later and vomitted 2 more times then was out again. And his vomit was mostly mucous and not really any stomach contents although he had not eaten well that day. So all together he slept 4 hours. He woke up at 10:30pm back to his regular self and ate some pizza and drank milk and the went to sleep around 12midnight and slept very well.
I was at the dentist with Gabe when this all started so I did not see the staring part, but I was there for the crankiness and the rest of it. I called the neuro the next day and he did not call me back. But we see him on Feb 1st. I cannot say that this was 100% a seizure but my gut and some research I did online tells me that this was an absence seizure. Even though I do not want to Evan to have another seizure, I would like to be able to get one on film to show the neurologist because I know he is going to tell me to videotape it. Double edged sword for sure in that one.

To My Sisters

Another Mom from my yahoo group for cerebral palsy mom's posted this on her blog and it really describes our lives in detail, so I have decided to post it on my blog. You may need a tissue.
To You, My Sisters
by Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be.Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like anyother sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail. We were initiated in neurologist's offices and NICUs, in obstetrician's offices, in emergency rooms,and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, bloodtests, x-rays, MRI films, and heart surgeries. All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs. We are united, we sisters, regardless of the diversityof our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as"special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes. We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the"specialists in the field. We know "the" neurologists,"the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know"the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychology. We have taken on our insurance companies and schoolboards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis. We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during"tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies fromwell-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try. We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother". We keep them by our bedside and readand reread them during our toughest hours. We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family. We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it. We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip. But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs.We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world. But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

Riding the School Bus 11-07

Well, now that Evan is in his special ed preschool he is eligible to ride the bus to school. I was very nervous about this because of the restraint system. He is strapped in a 5 pt harness in the morning but the afternoon bus does not always have this so he is in a vest system. I still might have him ride in his wheelchair but we will see how it goes. He is so excited to ride the bus and I imagine he thinks he is a big boy getting to ride with the other kids. Mommy on the other hand cried the first day. I guess it is the whole label the "short bus" gets and what it was called when I was younger, it could be the fact that he is in special education that makes it hard and the fact that he has only been in school two weeks and I am already having to fight to make sure he is getting the services he needs. Oh, well that is the life with the school district and having a special needs child. But all in all Evan is loving school and having a great time. He is even taking naps a couple days a week.

First day of school October 29, 2007

Today was Evan's first day of preschool at Elitha Donner Elementary in the special ed communication based classroom. He loves school but he did cry on Wednesday and Thursday when I left him. He may be riding the bus starting on Monday if they have a good restraint system.

Ready to go to school like the big kids

Evan is playing at the beginning of his class


Evan is wiped out after a long day at school

Update on Evan 10-07

Well, Evan had his IEP on Friday October 19, 2007 and it went a lot better than I was expecting. Of course once he starts school we will see how it goes. Anyway, he will be starting school on October 30th at a special education preschool that is a communication based program. His class will have no more than 12 kids in attendance. He will get group speech therapy and OT, as well as individualized services as well. He is going to get a adaptive PE evaluation which hopefully, they will recommend that he still gets Physical therapy as well. Another big concern is feeding therapy. I am hopeful that the speech therapist knows enough to work on that but if not then we can contract out with our past feeding therapist. Basically it is a wait and see game right now, I have to wait and see how things go at the school and with the therapists and then if it is not to my liking and Evan's benefit then I will have to do what I can do to get it changed. I will post pics of Evan's first day of school soon. I am so excited for him to start school I think he will do very well.

Evan's 3rd Birthday 10-2007

We celebrated Evan's 3rd birthday with a Thomas the Tank Engine party. We played pin the #1 on Thomas and had a pinata. Here is the cutest picture of Evan blowing out his candles. His low muscle tone in his mouth make it hard for him to make the proper formation to blow so he closes his eyes and blows through his nose. It is so cute.


Evan loves this horse he got from Aunt Donna


Hitting the Pinata


Evan and Mia on his new Thomas couch

Evan loves the playhouse

Transition Meeting 9-2007

We finally have a date for Evan's transistion meeting, Thursday September 27, 2007. I am happy to finally have this happen. Those of you outside of this special needs world may not know what this is so I will explain how the system works.
Special needs children are serviced by the Sacramento County office of Education Infant development program from birth to age three. After three everything is transferred to the school district. So first you have a transistion meeting to talk about what will happen with therapy, preschool etc. once the child turns three. The next and most important meeting is the IEP(individual education program) which is where everything is written down and the parents and school district agree to and sign. (and hopefully the district follows through).
Evan is going to be enrolled in a special ed communication based preschool which is what he needs. All of these meetings need to be done by the time the child is 3yrs old. Evan will be 3 in 5 weeks so I am anxious to get everything in order, so he can start preschool.
I will keep you posted as to how these meetings go.

Liberty Swing August 2007

Evan loves being able to swing

check out that smile

Today I took Evan to Kloss park to try out the new Wheelchair swing which they call The Liberty Swing. I had to go to the community to get a key which unlocks the seat belt and the ramp that holds the swing stationary. It was interesting because everyone at the park was certainly curious about what we were doing. But Evan's smile says it all. And I would ask him "Evan do you want down or do you want more and he would always sign more. He loved it and I loved that my son was able to experience swinging. We have tried the baby swings but Evan is just too big and last time it took two people to get him out in addition to taking his orthotics and shoes off. I tried to push him on the regular swing but he just cannot hold on with two hands and almost fell off. So I am really glad that we can take advantage of this option. There is not doubt that I will be sharing this with as many other special needs families that I can. I was in tears watching Evan smile and laugh as he swung on the swing. It was the best part of the day.
Notice that he has a grip on his train, he had that all day. But check out that smile.

New AFO's August 07

Check out the fancy Answer 2 shoes


Horses on the straps(of course)


All together now


Evan is checking out his new shoes.


Look at me sporting my new shoes.

Evan got a new pair of AFO's today. We were really excited about this because his last pair were getting way too small for him and had been causing bruising. Also this new pair has horses on the straps so Evan is really excited about that.

So for Evan's first pair of orthotics he had to wear a size 12.5XW shoe because they are so bulky and had the slip guard and padding on them since he was not really walking when we first got them casted. His second pair were a lot less bulky and he was able to wear a size 11.5XW to start with but he was wearing them with a 12XW since his feet had grown and the 11.5 XW were looking very worn out. (i was excited that he actually wore out a pair of shoes). So I figured either the 12 or 12.5XW should fit with the new orthotics. Well they did not so I was not a little worried since there was really not money in the budget to buy a new pair of shoes until next friday.Well, God was certainly blessing us today, because after doing the final adjustments the orthotist walks in with 3 boxes of shoes and not just any shoes these specific types of shoes that are made for orthotics called Answer 2 and he says that he is now giving away a pair of shoes with every pair of new orthotics and if we wanted additional pairs they are $35. Rudy and I were so thrilled the answer to our problem was solved. We are so blessed. So needless to say we will be going to Hangar orthotics for as long as we can.I also have to give thanks that we have insurance, and medi-cal and also the Alta California regional center to cover the cost of these orthotics because I signed the bill today which stated the cost as being $1300. And I know of other states where there is not this type of coverage. So in spite of all of the not so fun stuff we get to endure on this journey with Evan, there are great moments as well and today was one of them.

Dynavox Trials August 2007

Evan has done very well in his development but speech is a big area where he is very behind, we have been working on signing but their is frustration with both Rudy and I as parents and Evan as the child who cannot get his needs or wants across to us. We have decided to get a DynaVox communication device for Evan, this is basically a personal computer for him that has a program for communication, it has pictures and scenes that he can choose from. He has done a great job in learning to choose and navigate up to 2 screens. Hopefully we will get Evan's device sometime in September so he will have a chance to work with it before he starts preschool in November. These pictures are of Evan and his speech therapist Jane and the DynaVox rep Jamie.

72hr EEG March 2007

Evan was at Sutter Memorial in March 2007 to undergo a 72 hr EEG which is a test that measures brain waves. We did this test to see if Evan has seizures at night that are waking him. For those of you who do not know Evan does not sleep through the night and often wakes up screaming at night. The EEG started around 12noon on Wednesday afternoon and ended on Friday evening. The neurologist said that Evan does have seizure activity but is not have full blown seizures at this time. So we are just going to continue giving Evan medicine that helps him sleep and hope that things will improve as his sleep system matures.

Please see this link if you would like to see pics-http://justinichfamily.blogspot.com/2007/08/evans-72hr-eeg.html

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.