Cynthia's Jr. Prom Part

Things are different for prom that they were in my day. Cynthia and her date had to be ready to take pics at the school at 3pm and then they came back to our house until they had to leave at 5:30 to be at the Sheraton at 6pm.


Here is a close up shot. I did her hair(pretty pleased with it)

Here is a side/back view of the dress


More of the back

Full Length view

Here is her date, who is her friend Phouc, too bad he didn't smile

I also made this shawl to go with her dress, the shades are not quite the same but it works

Facts of Life

Well, today I started a weekly routine of going to my Grandma's to help out. She is 85 years old and starting to become forgetful etc. She is healthy. It is sad to see her age showing. I don't want to go into details because this is a private matter. But growing old is one of the facts of life. I hope I live to be 85 and be as healthy as she is. I am so excited about this opportunity for a few different reasons. 1- I will get to spend time with my Grandma, 2-Pay it forward, 3- additional income for our family. My Grandma grew up during and after the depression so she saves everything and this has led her to be somewhat of a pack rat and she buys food, lots of food and saves it and then it ends up expiring. My goal is to keep her company while doing some housekeeping and hopefully organization. But I am also going to learn things. So today I told my Grandma "While I am here I want to learn about your life!" I am so interested to hear her stories of her life, who better to tell them and she has been around for some great events also.

So here are the stories I heard today:

How did you meet my Grandfather?
Well, I was in highschool and I met him through church. He was working on a barge at the time.
My grandfather was in the Navy and was stationed in San Francisco and my Grandma came to visit with my grandfather's dad, brother & sister, and another friend. They drove all the way from Florida. She told me that they had gotten a flat tire and a man stopped to help them and ended up giving the three girls a ride. (We talked about how you could never do that now days) So she arrived in San Francisco and my grandfather proposed and my grandma commented on how she thought he had that planned before she even arrived. So she sent a letter to her mother to send her things that she had gotten married. Can you believe that? what a story. Anyway today we were making a recipe for Kale and Grandma used this old cook book and she said this cookbook I bought right after i got married. We went to Sears to look at something and he (meaning my Grandfather) knew I needed a cookbook. How many years later and she is still using it. Only a cookbook that old is going to have a recipe for Savory Kale

Anyway, I helped my grandma out today and also learned some new information and also cooking tips. Go back next week for more.

Playground Blues

Well, yesterday we checked out the new park really close to our house. I was really excited that we had a park in bike ride distance. Well, my excitement has been short-lived. This park has 2 play areas, the standard 2-5 year old area and the 5-12 year old area. Now we get to the park and there is a tall play structure with a variety of ways to get up to the really tall slide. It has rock climbing, ladder, and some other types of things to climb up on but no regular steps or platforms. What the heck! Evan is physically unable to climb up this play structure at all and when he is 5 years old in about 6 months he will probably still be unable to do this. I do not expect all parks to be accessible, we have a park about 10 minutes away that has the wheelchair swing and has ramps and steps which are perfect for kids of differing abilities. I am very fortunate to have this in my area as other friends of mine have to travel around 20+ minutes to get to an accessible park.

I am just upset because Evan has come a long way in his ablity to play at regular parks, as long as the structure has steps that he can walk or crawl up he is good. He even managed the McDonald's play place for the first time ever, in the past he has made it up to the second level and then was either to scared or unable to get himself up any further. He just managed the McDonald's play place on Saturday with the help of his big brother but once he knew the slide was up top he was motivated to do it on his own.

Anyway, back to the park by our house. I helped him up to the top so that he could go down the slide because he now loves sliding. Anyway, I had to climb up and keep an eye on him because this thing does not have much railing and if a bunch kids were up there and trying to push past him then they could have easily pushed him off. Needless to say we only did that once. But I saw kids who looked to be 4 years old or possibly younger having no problems accessing the play structure.

Evan should not be limited to just the little kid play area because of his disability, especially not when he can access other playgrounds that provide steps as 98% of them do.

The other thing that annoys me is how kids who are faster than Evan always push past him , I can tell he gets kind of frustrated because kids push past him and he never gets a chance to get ready to go down the slide etc. At the park mentioned above Evan was going across a little bridge in the 2-5 year area and he decided to crawl because he probably felt more comfortable well this kid was getting ready to walk past him while he was crawling, ( he could have easily stepped on Evan's hand) so I said "Please wait your turn" and he started to go again and I touched his leg and said please wait your turn. I was standing and watching Evan go through and since it was the kiddie area I could reach. Anyway, I just felt I had to give Evan the chance to go through without some kids pushing past him.

Evan is pretty good all things considered, he does not get frustrated easily and he in my opinion does not see himself as different most of the time, he just does stuff in his own way. Like crawling across the bridge or laying on his tummy on a skateboard and propelling himself with his right hand. I hope that this is an attitude that he does not ever lose.

Ok, well hope that makes sense. I just had to vent about the park situation. I am thinking about writing a letter but I don't know if it will make much difference. The park does have a sprayground so that will be fun in the summer.

Evan's Dr. Visit Today

So I took Evan to the Dr. today because he has been sick for about a week with a runny nose, cough. The cough was getting pretty nasty and he sounded a bit wheezy last night. So we went to the Dr. this morning and she sent us home with an antibiotic, prednisone and nebulizer medications. She said that when a child with asthma gets exacerbated asthma symptoms in the beginning of a cold she does not worry but when they get the symptoms towards the end of it she suspects that there may be some kind of bacterial infection going on. So she did not officially say pneumonia but it is probably something that was developing. So needless to say I am glad I brought him in.

Before Evan was diagnosed with his CP, I brought him to his pediatrician and she would always dismiss my concerns. So I would leave the office second guessing myself. Well once he was diagnosed, she would still make remarks about how mild his CP was and always bring up other kids who were more affected that Evan. After a while I decided to leave this pediatrician because she never took me seriously. Our new pediatrician is so awesome, she always takes me seriously and makes me feel that my concerns are real. I have taken him in and he has been fine but she never makes me feel like I should not have been there. She always writes prescriptions for any equipment that I need for Evan. She is awesome. It is a bit of a drive compared to our other office but it is well worth it.

Fundraising

Ok, well I am bound and determined to raise money to take Evan to Canada to the Ability Camp for their Conductive Education and HBOT program. So here is a start. If you get magazine subscriptions and would like to renew and have part of the proceeds go to Evan then please check out this website.

http://www.magfundraising.com/GroupPage.aspx

I know times are tough and people do not always have extra to give, but this is a great cause and I think these therapies would be so awesome and helpful for Evan and contribute to his improved development and progress. Please share with your friends and family.

What a week!

Evan has had quite a week already and it is only Tuesday. Sunday he fell off the couch and hit his head on the coffee table and had a huge goose egg on his forehead from that. Luckily our table is rounded edges or we would have likely been in the ER getting stitches. Then the very next day he was walking on the freshly mopped floors(after I told him not to) and he fell right on his face. He had a toy in his right hand and so he did not try to break his fall at all. He had a major bloody nose, and cut his lip but inside his mouth by his front teeth. He has a fat lip from that fall. Poor baby cannot even drink from his sippy cup. This is probably a good thing because he is getting more practice with the open rim cup. To top it all off he has a suspicios cough and congested, gunky nose. Today I bought a battery operated nasal aspirator and it worked pretty well the one time I used it. We are heading to the Dr. this week to make sure Evan does not have any type of infection and to check on his breathing. Oh the joys of a sick child. I did not take any pics of his owies but here is one to enjoy.

Evan is using his desk to trace letters on the cards and also put the correct letters in the cards to spell words.

Alternative Therapies

When Evan was first diagnosed I was looking into all kinds of different treatments for him. Everything was so expensive and we were eventually getting six therapies a week and he was progressing so well in some of his development, he was crawling and then eventually started walking so I thought we were doing OK with what we had. But as I have researched some more and talked with other parents who are doing alternative therapy I see that Evan can still greatly benefit from an alternative therapy. I have a few that I want to do for him, but I think I would like to start with Conductive Education and Hyperbaric Oxygen therapy.

What is Conductive Education?
Conductive Education started in Hungary 60 years ago. Conductive Education helps children and adults with motor disorders learn to overcome problems of movement resulting from disease or damage to the central nervous system. It approaches motor disorders as a problem of learning or relearning - a problem that will respond to the appropriate teaching. If they can move and they can learn, they can learn to move. By repeating tasks and integrating intentional movement with learning, the brain creates alternate pathways to send messages to muscle groups creating the desired movements.

This therapy will work on the areas where Evan has the most problems, low tone in his trunk, neck and mouth, using and or moving his left leg and arm more, feeding himself, writing etc.


What does Hyperbaric Oxygen Therapy do?
At normal air pressure you are absorbing about as much oxygen as you can. Even if you were fed pure oxygen at this pressure you couldn't absorb more oxygen than you would get from normal air. However if the pressure was increased to about twice the pressure difference you would get on an airplane, you could absorb far more oxygen. This extra oxygen is said to increase the level of activity around the brain injury.


Are Conductive Education and Hyperbaric Oxygen Therapy more effective together?
If Conductive Education is trying to create alternate pathways in the brain and if Hyperbaric Oxygen Therapy is stimulating those areas, then it might make it easier to create those new pathways. The results aren't just theory, we have seen first hand over and over again. While the results can be good from either one, they are much better together.


I am not sure how much this would do for Evan because he does have a brain malformation but I think or feel that it would do wonders for him. His brain would respond very well to the oxygen.

At the specific place I am looking at the cost would be around $7400 for 5 weeks of therapy

120-145 hours of Conductive Education

40 hours of HBOT


This is located at The Ability Camp whose web address is http://www.abilitycamp.com/CerebralPalsy.html

So I guess my next step is to find out where this place is located, then find out how to start fundraising or getting sponsors for Evan's trip out there. This is a major dream of mine but I am unsure of whether or not this will happen because of the economy etc.

Can anyone give me pointers or ideas on how to start fundraising and getting sponsorships. I thought I could just start sending out letters for sponsorships and I would love to do a spaghetti feed and/ or scrapbook event for a fundraiser. So if you have ideas or experience with this please feel free to email me at stacyj@surewest.net

How could anyone resist this cute face?

Supporting Epilepsy - Purple Day

We will be wearing purple on March 26th to support the awareness of Epiliepsy. Seizures touch our lives as Evan has seizures and we have many friends' children who also suffer from seizures. So if you want to spread awareness wear purple and let people know why you are doing it.