Our Backyard

Well, I can't post the pics but if you have been reading this blog you know that our backyard leaves something to be desired. We bought our house new and of course that means no landscaping in the back, well we have not had the means to do much with it because pretty much all hell broke loose the month we moved in what with Evan's diagnosis etc. Anyway, in summer 2007 both sets of parents helped us with a retaining wall and patio, so this meant we just had to get the grass in. Well, this weekend we picked up a rotatiller for free from some good family friends as they are done with it. Rudy got in the backyard on Sunday and was the Rotatiller King, with his dad and Gabriel's help. So what this means is that we are so much closer to being able to plant grass, and once the grass is in we are going to have a Backyard party.

You can see our backyard photos in this post http://justinichfamily.blogspot.com/2007/09/backyard-in-progress.html

due to the location of our house our backyard was not flat, it was slanted so we had to put in a retaining wall in order to flatten out the dirt. So now the dirt is totally flat where Rudy has rotatilled. He still has more work to do and would like to add some better soil to the mix but we really just want to get the grass out there so the kids can play on it insted of dirt.

Botox/Anesthesia Reaction

Evan had his 3rd round of Botox today. He had a really bad reaction(in my opinion) to the anesthesia called Emergence Delirium:



Delirium is a complex psychiatric syndrome that includes perceptual disturbances, hallucinations, and psychomotor agitation (6). At present, there is no unique definition of ED because of its heterogeneous clinical presentation. Some authors have described such an event as a dissociated state of consciousness in which the child is irritable, uncompromising, uncooperative, incoherent, and inconsolably crying, moaning, kicking, or thrashing (7,8). Typically, these children do not recognize or identify familiar objects or people. Paranoid delusions are also possible (9). Combative behavior has been more often described than simple restlessness and incoherence (5). Sikich and Lerman (10) defined ED as "a disturbance in a child's awareness of and attention to his/her environment with disorientation and perceptual alterations including hypersensitivity to stimuli and hyperactive motor behavior in the immediate postanesthesia period." ED usually occurs within the first 30 min of recovery from anesthesia, is self-limited (5–15 min), and often resolves spontaneously.



He was crying/screaming and kicking his legs, hitting and trying to get off the bed. It was like he was in a lot of pain and trying to get out of his body. I do not think he was in pain but he may have been having some pain from the injections. Evan has been put under with IV anesthesia 4 times and then 3 times with the gas method they use at Shriner's. He is usually a little cranky when he wakes up and is usually fine about 5 minutes afterward. This reaction today was so over the top compared to what he usually goes through. I held it together while I was in the room with the Drs. and nurses but once on the elevator I just had to cry. I was alone with Evan because I felt that since this is pretty routine Rudy does not need to miss work to be with us. Well, Rudy must have had a 6th sense that he needed to be there. He called me during Evan's episode to let me know that he was out in the lobby of the 4th floor. It was good because the child life specialist took Evan for a little walk and he calmed down a bit after he saw Rudy. He was starting to come out of it anyway but by that time it had been the full 3o minutes. So if he ever reads this "Thank you honey for being there today". I never want to see Evan go through that again. So I talked with both the anesthiologist and his orthopedic Dr. about other options because I do not want him to go through this again. I cannot handle seeing it again.

So here are the options:

1. use an IV anesthesia next time

2. give Versed beforehand

3. Do Botox w/o anesthesia

4. Discontinue botox and go to an oral medication



For right now we are going with option #1 and see how he does with that. I am just so scared that he is going to start having bad reactions to the anesthesia, having a special needs child can mean that even if they did Ok the last time, things can change and they do change. I really cannot see him that way again. I know I will be scared the next time we go. I have already decided that if he has this reaction again then we will not do Botox anymore. Maybe in the leg where he does not have to be put under, he can try oral medications.

Evan goes back next Wednesday for us to start his serial casting.


I leave you with this pic of Evan and his Daddy

Feeling Old

I don't know if many of you know this but when I was 15 years old I was diagnosed with Juvenille Rheumatoid Arthritis. It began with me getting a rash on my body and having sore joints and fevers the Dr. originally thought I had Lyme Disease, so I was put on antibiotics but the rash got worse, so I think I did more antibiotics. This was the summer before my freshman year in highschool so 1991 I think. Anyway, over the summer I was away for 3 weeks, first to yearbook camp and I felt fine except for some pain and swollen joints, then I went to my Aunt and Uncle's cabin and I would have weird swelling and pain in certain joints, the I went to my cousins house and more of the same. So long story short I went to an internal medicine Dr. and they did all kinds of tests and everything was coming back either negative or normal. I ended up with a high fever one night and my mom took me to the ER. My Dr. at the time said he was admitting me to the hospital and not letting me out until they figured out what was wrong with me. While in the hospital I had all kinds of tests done. I remember getting an ultrasound of my heart. I will never forget the day my rheumatologist(although I did not know that is who he was) walked in my room. He examined my and tested reflexes and asked questions and it was about 10 minutes later and he said "I think you have JRA." And that is indeed what I had. I was in a lot of pain and had to get water drained from each of my knees. I had to get Gold shots 1x a week and then get my blood drawn 1x a week as well. I lost a bunch of weight and I missed a lot of school. I remember hearing that there had been rumors that I was either dead or had gotten pregnant. I thought boy the people who thought I was dead sure got a shock when I showed up to school.
I suffered with this for about 3-4 years, taking medication, getting gold shots, getting blood work taken. I went into remission and was feeling good for quite a while. I would have some hip pain because I had degenerative arthritis in my hip. I felt great during my pregnancies. I would say just in the past 3 years I have been having more pain and problems with my hip.
So I went to the Dr. and got an xray and found that I have arthritis in my neck, my hip is really bad and I am actually going to get x-rays of that tomorrow for my rheumatologist. So it is very likely that a hip replacement is in my future. I heard the recovery is not too bad now with the newest technology.
I have a plan for exercise and weight loss with my Dr. so that I can take some weight off of my hip. I just need to stick to a plan and have more will power to stay on a diet plan.

On to more exciting news. I signed Gabriel up for Soccer and will possibly be signing Evan up for the special needs part of the program. Evan is getting Botox tomorrow, which is good because he is tight again. Not so good that I have to be at the hospital at 6:30am.

Love/Hate

Another special needs mom and blogger did a post about things that we do not like about having our child have a disability. That and a comment that was written by a teenager with CP have inspired me to do a Love/Hate post, things I love and hate about this world of special needs.

Let's start with the good stuff first.

I love:

Evan's smile

determination

Can Do attitude

the great ladies I have met in person and online

the things that being Evan's mom has taught me

Hate:

I hate that he has to go through this

I hate that people call him a baby

I hate the stares we get when he is in his wheelchair

I hate being sad when I hear other kids talking

I hate having to fight for what my son needs and has a right to have

I hate long days at therapy and dr appts

I hate when people say or write comments and probably without meaning to hurt my feelings

I hate when people assume that since he is walking that he does not have a lot of issues

I hate that I have to buy special shoes for him due to his AFO's

I hate that I can't just take him to any park to play

I could go on and on but enough is enough. Sorry this is such a downer post. But I should have some awesome baseball pics for our next post.

Our own Guitar Hero

Gabriel entered the Talent show at his school, he played a song on his guitar. He has not had lessons or anything, he just plays his own way. I don't know if you can tell but he got a little bit nervous once he got up on stage.

Easter 2009

Our traditional Easter pic- Cynthia 17, Gabriel 8 & Evan 4 1/2

Evan got a head start

Getting the hang of the Egg hunt

Cynthia is looking for the higher eggs

Gabriel already has a full basket.

The whole crew

Grandparents at Baseball

Well, first you have to check out Evan's new baseball bib that I made him. Turned out pretty good if I do say so myself.

When I was growing up my brother played baseball, he actually still does sometimes. My dad was an umpire for the longest time. It is so funny to watch him at my nephew's and Gabriel's games because he stands there and silently critiques the umpires. Last year he helped out a young umpire that was doing one of Gabriel's games. Gabriel played 2 years of T-ball and 2 years of regular baseball and then decided that it is just not his thing. I was so excited when Evan got a chance to play. My parents and Rudy's parents came out to see Evan play this past weekend. My dad offered to help Evan since there were not enough highschool kids.

I love that my kids get to be active with their grandparents. Evan thought it was pretty cool that his Grandpa was out there helping him out.

Isn't this the sweetest picture?

Grandpa and the boys

Evan wanted Grandpa to try on his hat.

Grandma helping him run the bases.

Everyone that watches this baseball league just thinks it is so awesome.
This weekend coming up is the clinic with the Sacramento Rivercats called "baseball for all" that should be full of picture opportunities.

Giveaway on Better than Normal

My friend Melanie who also has a special kiddo is doing a giveaway on her blog. She makes the cutest crowns. So go on over and check it out.

http://danieljohnmaxwellspranger.blogspot.com/

More Baseball

While we were out on the field before the game Evan had to stand on the base to throw his ball, it was so cute.

Here is one of the highschool students(Glen) playing catch with Evan

Evan is all ready for his turn up at bat

His buddy for the game was Mike. He did an awesome job helping Evan out.

Out of the park!!!

Here they are running to first base

The kids on base get to tag the runners but nobody is out

Evan really seemed to like his buddy and really was paying attention to what he was doing.

As you can see there are kids in wheelchairs and kids who walk

Evan is listening intentlyto what his buddy Mike has to say


Evan saw the other players kneeling and he had to do the same thing


Home Run


At first I was sad that I just could not sign Evan up for regular T-ball like I did with his older brother, I was feeling annoyed at his disability. I do not feel that way anymore. It was so great to see him playing ball and totally being a part of the whole process. I cried but I was crying because he was getting this great opportunity and I had no worries at all. Every kid there had a blast, these were kids of differing disabilities and they were all playing baseball and laughing and smiling as they did so.

The highschool kids were so awesome, they friendly, patient and really made an effort to get these kids involved and what a great experience for them to learn about kids with special needs. I encourage other parents to look for this type of program in your area. As we all know certain dreams die when our kids are diagnosed with their disability but this is one that can be realized. We can't wait for the next game.

Evan's First Baseball Game

Evan started baseball today. It is through the park and rec district and there is a field which is completely accessible called Rivercats Independence Field. The field is all a flat hard surface which is user friendly for wheelchairs, walkers etc. Here is the first set of pics. I will add more but it is time for me to get to bed.


All decked out in his Rivercats jersey and hat


Evan loves this shirt so much he did not want to take it off and slept with it on

Evan and big brother, for once Gabe has to be the one to sit and watch Evan play


Evan and Mommy

Sophia's First Birthday

My brother's baby girl turned 1 year on April 7th, she is so adorable


Trying my hand at candid shots

She is all over the place walking, talking.

A boy and his Dog

I snapped these pics one afternoon


Our Silly Bishop rolling in the grass

Evan is telling me that Bishop is digging

Giving his Doggy some love

Enjoying the sunshine together

Bishop found an old bone

San Francisco

The first Saturday of April we went our seperate ways. Cynthia went to her Mom's, I went scrapbooking, Evan went to My Friends and Rudy and Gabriel went to San Francisco with Rudy's Mom and Dad


What can I say?


I bet he would have loved it if this was one of the infamous hills

A candy shop in China Town

Rudy mainly went to get Sour balls and ginger

Happy 35th Birthday Rudy April 2nd

We had Cake and Ice cream for Rudy's birthday
Here he is with the boys and his parents


Evan is standign at the counter because he really wants some cake and he also helped Daddy blow out candles

helping Daddy

Rudy is such an awesome father and husband, I hope we are able to live a long life together