What an Experience

Well, we were adventurous and took pictures of my 3 kids and my nephew and 2 nieces (sisters kids) . What an experience trying to get 5 kids to smile and look at the camera at the same time. My daughter Cynthia who is 15 is pretty experienced at smiling and looking at the camera while me and the photographer try to get the boys to look and smile so she looked great in all the pictures. Evan has discovered that he can crawl behind the backdrop so I told the photographers that we needed to keep him contained(hence the sleigh). All in all it was pretty fun, but there was not one pic that was so great we had to have it. I think that was the hardest part. Everyone did not look great in one pic, we would have 5 looking great and one not etc. But these were my two faves. The one without the sleigh is the one that we chose. We will be doing this again next year since my brother and sister n' law will have a new baby, which will bring the total for my parents up to 7 grandkids.

Cynthia 15 1/2 (almost 16)

Nathan 9 1/2 (almost 10)

Celeste 7

Gabriel 6 1/2 (almost 7)

Mia 5

Evan 3

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 youon the Internet, on playgrounds and in grocery stores.I've become an expert at identifying you. You are wellworn. You are stronger than you ever wanted to be.Your words ring experience, experience you culled withyour 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 ofus were invited to join immediately, some not formonths or even years. Some of us even tried to refusemembership, 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 sombertelephone calls, consultations, evaluations, bloodtests, x-rays, MRI films, and heart surgeries.All of us have one thing in common. One day thingswere fine. We were pregnant, or we had just givenbirth, or we were nursing our newborn, or we wereplaying with our toddler. Yes, one minute everythingwas fine. Then, whether it happened in an instant, asit often does, or over the course of a few weeks ormonths, our entire lives changed. Something wasn'tquite right. Then we found ourselves mothers ofchildren with special needs.We are united, we sisters, regardless of the diversityof our children's special needs. Some of our childrenundergo chemotherapy. Some need respirators andventilators. Some are unable to talk, some are unableto walk. Some eat through feeding tubes. Some live ina different world. We do not discriminate againstthose mothers whose children's needs are not as"special" as our child's. We have mutual respect andempathy for all the women who walk in our shoes.We are knowledgeable. We have educated ourselves withwhatever 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 wehold our breath while our children are tested forthem. Without formal education, we could become boardcertified in neurology, endocrinology, and psychology.We have taken on our insurance companies and schoolboards to get what our children need to survive, andto flourish. We have prevailed upon the State toinclude augmentative communication devices in specialeducation classes and mainstream schools for ourchildren with cerebral palsy. We have labored to proveto insurance companies the medical necessity of gaittrainers and other adaptive equipment for our childrenwith spinal cord defects. We have sued municipalitiesto have our children properly classified so they couldreceive education and evaluation commensurate withtheir diagnosis. We have learned to deal with the restof the world, even if that means walking away from it.We have tolerated scorn in supermarkets during"tantrums" and gritted our teeth while discipline wasadvocated by the person behind us on line. We havetolerated inane suggestions and home remedies fromwell-meaning strangers. We have tolerated mothers ofchildren without special needs complaining aboutchicken pox and ear infections. We have learned thatmany of our closest friends can't understand what it'slike to be in our sorority, and don't even want totry.We have our own personal copies of Emily PerlKingsley's "A Trip To Holland" and Erma Bombeck's "TheSpecial Mother". We keep them by our bedside and readand reread them during our toughest hours. We havecoped with holidays. We have found ways to get ourphysically handicapped children to the neighbors'front doors on Halloween, and we have found ways tohelp our deaf children form the words, "trick ortreat." We have accepted that our children withsensory dysfunction will never wear velvet or lace onChristmas. We have painted a canvas of lights and ablazing Yule log with our words for our blindchildren. We have pureed turkey on Thanksgiving. Wehave bought white chocolate bunnies for Easter. Andall the while, we have tried to create a festiveatmosphere for the rest of our family. We've gotten upevery morning since our journey began wondering howwe'd make it through another day, and gone to bedevery evening not sure how we did it.We've mourned the fact that we never got to relax andsip red wine in Italy. We've mourned the fact that ourtrip to Holland has required much more baggage than weever imagined when we first visited the travel agent.And we've mourned because we left for the airportwithout most of the things we needed for the trip.But we, sisters, we keep the faith always. We neverstop believing. Our love for our special children andour belief in all that they will achieve in life knowsno bounds. We dream of them scoring touchdowns andextra points and home runs.We visualize them running sprints and marathons. Wedream of them planting vegetable seeds, riding horsesand chopping down trees. We hear their angelic voicessinging Christmas carols. We see their palettessmeared with watercolors, and their fingers flyingover ivory keys in a concert hall. We are amazed atthe grace of their pirouettes. We never, never stopbelieving in all they will accomplish as they passthrough this world.But in the meantime, my sisters, the most importantthing we do, is hold tight to their little hands astogether, we special mothers and our special children,reach for the stars.

Auntie Again

Well, I am going to be an Auntie again, my brother and his girlfriend Alicia expecting a baby in April of 2008. We got to see an ultrasound last weekend and found out they are having a girl. We are all so excited. Evan was the last grandbaby born into the family. My brother has found his equal in Alicia, she loves to fish as much as he does and keeps him on his toes because she can dish it out as well as he can. So we are anxiously awaiting the arrival of our newest little one. I am so happy that my brother has found a great person to start his family and new life with . So keep checking in April for pics of the baby.

A cat has adopted us

Over the weekend this cat found it's way into our backyard. After about a day and a half I felt sorry for the cat and fed it some tuna. I know what you are thinking big mistake. Well, it has made itself at home and comes in the house to eat (to reduce flies and ants) and plays with the kids and cuddles with whoever will let it. But the cat goes outside at night and most of the day. Evan loves the cat he follows it everywhere.(i am not sure of the sex of the cat) The cat is pretty tolerable of Evan. Gabriel and Cynthia are excited to have a cat also. We are going to put flyers up because the cat does have a collar but in the meantime we will make sure it is fed and gets some love from a family. The funny thing is this cat reminds me of a cat I had as a child, her name was Bud and she was not always the nicest cat, but my parents got her before I was born and thought she was a boy until she had kittens, they had already named her bud so we just say her name was Rosebud and called her Bud for short. We are enjoying having a cat.

Riding the Bus to school

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.

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.


Evan is playing at the beginning of his class

Evan is wiped out after a long day at school

Update on Evan

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.

Happy Birthday Evan

Evan had fun playing in the playhouse outside

Evan and Mia are buddies, here they are sitting on Evan's new Thomas the Tank Engine couch that Grandma Barbara and Grandpa Steve got him.

Auntie Donna got Evan this cool horse and he sat on it right away and pretended he was riding it. He thought it was so cool
Check out Evan in this last picture. He is trying to blow out his candles but he does not have the skills to actually blow, he has a hard time getting his lips together in the right position. Anyway, I think it is so cute how he tries to blow his candles out. He does the same thing when we are blowing on hot food.

The Boys

Here are some pics we took at Picture People in June. I bought Gabriel and Evan these jerseys just so we could take a picture in them. These pictures really show their personalities.


Our friends Nicholas and Connor Kiesel got these cool ride on toys, Gabriel and Evan had fun trying out the motorcycle

Evan's Transistion Meeting

Some fun pics of the boys

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.

Build a Bear Workshop

So after Mia's party, Rudy, Evan and I headed to Arden Fair Mall just to look around. Gabriel had decided to stay the night with his cousins and Cynthia was with her mom. We decided to let Evan do a build a bear because he had never done it and he is at a good age to do one. We were hoping to find a horse but decided to choose a puppy. Evan had fun with it. We did not pick clothes and just did the simple version. Evan stepped on the pedal that controls the stuffing put into the puppy, he also got to give his puppy a bath. It was fun to do this special non therapy or cerebral palsy related outing with Evan.

Mia's Birthday Party

Look at that Bananna Split

The cousins- Mia, Kennedy, Gabe and Parker

My niece Mia turned 5yrs old on September 16th and her Birthday party was at Leatherby's. I ordered Gabriel a kids size bananna split, which was really big. He shared with his Uncle Morgan. Everyone had a great time.

Camping in Downieville

We were right by a river stream and the kids had fun in the water. Evan loved it.
Evan Eating some pancakes

We went camping in Downieville with Rudy's side of the family over labor day weekend. We had a lot of fun. We were right by the river and stayed in a cabin, it was really fun to get away from the daily wind and grind of school, housecleaning, therapy etc. Gabriel did not go with us because he went with Grandma and Grandpa Bon camping with his cousin Nathan. Cynthia and Evan loved the water. Evan hung out in the wagon for most of Sunday evening. We all decided we want to go back again maybe for 4 nights instead of three.

Backyard in Progress

I am not sure how many of you know that we bought our new house in July 2005 and due to many things that happened we did not get a backyard put in. Well, we finally have a retaining wall and cement patio.(thank you to our parents for helping out) Now all we have to do is haul away a lot of dirt and put in sprinklers and a grass and we will have a full fledged backyard. We will be getting a patio set from my aunt and uncle who are retiring to the mountains, and my dad is giving his bbq as he has upgraded. So next spring we should be ready to have some bbq's at our house. We are so excited and the boys just love playing in the dirt and mud, Evan got so muddy the other day but he just had a huge smile on his face, I could not find the camera. I will keep you updated on the progress of the backyard.

Liberty Swing

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.

First Day of School

Today was a big day for Cynthia who started 10th grade at Franklin High School and Gabriel who is now a 1st grader at Franklin Elementary. Here are the traditional first day of school pictures. Gabriel is happy to have his friend Rodger back to start school with.

Evan's New AFO's

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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 thrilled 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.

Six Flags Discovery Kingdom

On July 31, we went to Six Flags with Grandma Barbara & Celeste. The kids had tons of fun and Evan was even able to ride a few rides. Celeste and Auntie road the water ride and we sure got soaked. The Thomas Town was good but it took three tries for us to be able to ride the train because they were having mechanical difficulties that day.