Super Hero Day

Friday was Super Hero shirt day at Evan's school. So funny because I had bought him a Super Man shirt at Wal Mart hours before I got the text from my friend asking if I knew about it.
My friend Kate who is Gavin's mom always referred to Gavin as her little Super Hero. Gavin recently passed away and so many people changed their profile pics on facebook to Gavin's super hero logo.

 

 

It really got me thinking about all of our children with special needs. All of the kids that I have met personally and know online are some of the happiest kids. Lots of smiles and laughter in spite of their challenges. These kids say so much and often times without saying a word. So I was very excited that Evan got to have a fun day at school being a Super Hero. And in typical Evan fashion he took his Super Hero role to the next level.

Flying down the hallway!

 

Here he comes to save the day!

It's Super Evan

He was so excited for me to do his hair this way!

 

 

Even on the bus he is flying away

He was flying to the bus!

 

Evan just goes with the flow most of the time and he really shows his personality in times like this. He just makes me smile and a cuddle or hug from him definitley perks up my day. I remember as a teenager when I was having my blood drawn once a week and a shot once a week to help with my arthritis. It got to me after a while and I only did that for a couple of years.

 Evan has had too many blood draws to count. At least 40 EEG's and a lot of those close together and hooked up for days. Many, many IV's and being sedated. 2 surgeries. But in spite of all of this he rarely complains. In fact, he gets excited to go to the hospital because he gets to lay in bed and watch TV and sometimes the child life team brings him an iPad to use for a while.

 He is so easy to please. He gets excited when he gets to have the syringe that comes in his gtube kit. He gave his Auntie a high 5 when she finally got his extension tubing hooked in. He loves his little cousins. He happily will sit and watch his big brother play video games. He just loves life and wants to be a part of typical things. He loves his mommy so much. When I was sick he pretty much spent the weekend in bed with me. When I was crying because I was reading that our friend Gavin wasn't going to make it he gave me a tissue. Anytime I cry he comes and pats my back. I have to be careful because it makes his sad and he will sometimes start to cry.  

And it is just not Evan that is this way. Most of my friends have children with special needs and a lot of them are non verbal or have limited speech. But one thing that I can say across the board is that these kids are happy. They are well taken care of and they love their families. But they can just make you feel so special when  you are given a smile.

Raising a child with special needs is certainly a roller coaster of ups, downs, straight aways and loop de loops. And there are days when you wish you could change it. But it's a life that teaches you to cherish the little things, not to take anything for granted, to be more compassionate and less judgemental because you don't know what a person is going through. And my favorite parts are meeting other parents and their kids. There is just something about being able to call a friend and talk about IEP's, bathroom problems, diapering your 8 yr old, wheel chairs, walkers, AFO's, EEG's, MRI's etc, and know they won't look at you like you are crazy that helps make this journey a bit easier. So here's to Dylan, Gavin and the other special needs Super Heroes that are flying up in heaven and for all of our Super Heroes smiling, and loving life here with us.



 

Baseball 2013

Evan is very fortunate to have an opportunity to play baseball on a league for children with special needs. It is an awesome experience and he has played for 4 years now. We just started up his 4th season. My husband always says that it is just as much for me as it is for Evan. He says this because during baseball season I get to meet up with some of my dear friends and other moms every week and we get to watch and help our kids play baseball. It is so awesome. We are so grateful for this opportunity especially because our kids may not fit in well at the typical leagues. We don't worry about them having a melt down or not wanting to participate or throwing the ball the wrong way etc. We are all on a similar journey.

This past Saturday was our 3rd week and my parents came to watch Evan. He was so excited to see them and this season he has really been interested in the outfield just as much as he is in the hitting and running bases. He is ready to catch the ball and throw it if it is hit to him. He is such a ham as well. After he hit the ball everyone was clapping and cheering and he was waving to his "fans" as he ran to first base.  Then he was on 3rd base and the ball was hit near him so even though he was on the opposite team he picked up the ball and threw it. He is so funny!!!

Opening Day

Evan picked out his #1 jersey

Love how he winds up to throw the ball

Got the ball!

He loves the sports wheelchair but he can only go in circles so he doesn't really use it. Plus he never wants to get out of it. LOL

Grandpa giving him pointers of how to throw the ball

Seizures

I would like to give a quick update on Evan's seizures. We had a great run with no visible seizures. Around mid March they started picking up again. So we had an EEG, had a consult with the nutritionist to tweak the diet he is on in hopes that this would help. We also met with his neurologist. Evan was put on 30mg of Valium for about 10 days to see if that would help the seizures. It did pretty much stop the seizures and when we had the follow up EEG it was one of the best he has had. The D r. was so excited to tell me how great it was. Because it made Evan so tired we have lowered the dose to 20mg and I have leeway to lower it to 15mg if I want. It is very exciting that we were able to quickly get Evan's seizures under control because I was worried it was going to be a repeat of last year.

One thing we are doing is keeping Evan on the valium as a more long term option. It does make him a little more tired but he is able to function. He is only going to school for about 3 hrs because he is usually ready for a nap in the late morning or early afternoon. Since there is only 4 weeks of school left he isn't missing out on a lot of activities at school and a lot of his instruction time and therapies happen in the am.

So for now things are going well with seizures and we hope to keep it that way as long as possible.

Even though we've never met in person- special needs Moms and social networking

For the most part when I say that being Evan's mom is a blessing and the hard parts are not really because of Evan himself but because of having to deal with insurance, school districts, countless therapy and Dr. appts etc. I really mean it. I mean I have days where my patience is short with him but that is true with any kid. One of the most important things in my opinion is having other moms or parents to connect with who are on this special needs journey as well. Both friends that I know in person and see on a semi regular basis and also the friends that I only know online and probably won't ever meet. I feel connected to all of these people. We are each others support. We celebrate our kiddos milestones and we sympathize with the frustrations and things we deal with. And we worry about each other's kids when they are sick or in the hospital. Checking facebook for updates and praying. When Evan was in the hospital so much over the summer with his seizures it was so great to read the encouraging comments or to ask questions and update people as to what was going on.

So I am checking facebook and praying along with many other people when there is a child or Mom in a critical situation. And when the worst happens and a child passes away our hearts ache and we cry for the family and I think for ourselves as well. When we started this journey with Evan and I started to meet other Moms and Dads with a special needs child I never really thought that any of my friends kids would pass away. Then almost 3 years ago my dear friend's son passed and then another online friend's son passed away and now my online friend Kate has had to say goodbye to her son Gavin.(you can follow her on facebook page Chasing Rainbows) So of course I worry about Evan. These other kiddos were just as physically healthy as Evan but like a lot of kids with special needs they held on to colds longer or needed breathing treatments etc. It just shows that it can happen to anyone. One thing having a friend who is grieving has done for me is helped me be more aware of what I say or aware of dates that are the anniversary of 1 month, 1 year, 3 years etc. birthdays and holidays I am always thinking and say an extra prayers for the families who have children in heaven.

When  you have a child with special needs your life revolves around them. You worry about them, you fight for things that they deserve in school, you take them to countless appointments, spend hours doing research and of course caring for them. If you have other children you worry if this is affecting them and try to make sure they have one on one time with you and time away from their special sibling especially if it is not as easy to do outings with that child. You worry about your spouse and your relationship. I could go on and on. So imagine if that child passes and a lot of that is gone.

I am not sure how to not worry about Evan or even other friends kids. But I just try to control what I can. I make sure Evan gets his seizure meds because if something happens I know that I was doing everything I could do. I take Evan into the Dr. when my gut tells me to, even if it turns out to be nothing at least I had him checked out just in case. Beyond that I don't think I can prevent anything happening to him. I will cherish everyday I get be on this journey with Evan. He has taught me so much and I have amazing friends and experiences because of him.

Awesome Drs. & hopes for communication

Evan had an appt with one of our favorite Drs.- the awesome Dr. Hart, he is a physiatrist & also deals with a special needs child or two of his own. ( the rumor is he's got 2 with autism). He used to work at Shriner's and we followed him to Sutter. Anyway, we decided that Evan will see the ENT & get set up to do both Botox in the saliva glands & also in his left hand like we used to do. He talked & made good points as to why he felt Evan was not a good candidate for the tendon transfer hand surgery. I'm kind of bummed but I don't want to do surgery if it won't help him. So we will just do hand splinting for now.
We also talked about my frustrations with school. And Dr. Hart wrote a letter stating that Evan should have an aide that is experienced in behavior therapy & also someone who will be able to help him use his communication device. Dr. Hart totally gets Evan & said that Evan is smart & communication should be his most important goal. I love that he gets Evan & we are on the same page as far as knowing that he will not have a functional speech & a communication device will be his main form of communication.
Speaking of communication devices- Evan currently has an ALT-chat & it really doesn't seem to be very user friendly. I find that it's hard to find things or it takes too many different pages to go through. It's frustrating to me. Evan was using with consistent prompting & encouragement at his last school placement. This school year he's not using it at all because nobody is prompting or encouraging him. Also, the speech therapist isn't using it either. This is something I will bring up in his IEP! I feel that they are doing a huge disservice to Evan in not continuing to push him to use the device.
At home it is harder to remember to get him to use it because he can get his needs across for the most part.
So hubby & I agree that we want to get Evan an iPad ASAP. But in the meantime I will start using his device & other communication options more. I'm excited to see Evan grow in this area. He's made so many strides this year as far as maturity & cognitive age goes.

EEG & Neurology Follow Up

Last week on Wednesday January 9th Evan had an EEG. Probably his 15th in the past year. He hates them and I hate taking him and putting him through the EEG but I know it is needed. He said No, the minute I rolled him into the building. He did not want to lay on the bed. He was playing on my phone and that helped keep him occupied. The part that he hates the most is the exfoliating scrub they have to use to clean the skin. He sits mostly still for the rest of it. Sometimes he does this thing where he kind of just goes limp and breathes funny, I wonder if he is just checking out because he hates the process so much.

We had to get him to sleep in this EEG do he had 2 doses of Zanaflex to get him to sleep. During the EEG before he fell asleep the tech suggested I take the phone away because it was distracting him from falling asleep. I understand her saying this. But I had to laugh inside of myself. Really? This child is going through a tramatic event in his life and he doesn't want to be doing it and you want me to take away the thing that is keeping him calm. Seriously Lady. Well, I had given him his first dose of Zanaflex as she was hooking him up in hopes of calming him. So about 20 mins into the EEG I gave him the 2nd dose and he was asleep in about 15 minutes. Given the fact that Evan does not like the EEG he really does well. He fusses and kicks but he's not screaming or crying and we get the test done which is important.

Once the EEG was hooked up and running I was looking at it to see what was going on. I feel that I am pretty well versed in reading Evan's EEGs. I can tell when he is having a seizure and when things are calm. Well, I guess I don't know as much as I thought.  I thought I saw seizures happening and I was concerned that something weird was happening in the sleep portion. I had worked myself up into quite a mess that night. The next day was his neurology follow up and I was certain I was going to hear that he was having seizures and the ketogenic diet was not working as we had thought. Well..........

That was not at all what I heard. His neurologist is happy with the EEG. Of course it is not perfect as Evan has a brain malformation. But he said he is having spikes but not seizures, the absence activity is gone and the continuous spike wave in sleep in only happening on the right side now. This is good news. Each day that goes by I feel myself relaxing a bit. But then he does something weird and I go on alert mode again. Of course my hope is that Evan stays seizure free but I feel that in reality that will not happen. So I am doing my best to enjoy life and not stress too much about seizures. Way easier said than done. But I am so happy to share good news in regards to seizures.

Stay Tuned next time for School Drama!

Quick Update

This will just be a quick update. Evan is doing so well. I feel like I am waiting for the other shoe to drop but hopefully, we will have a long run of nothing to exciting happening.
Lately, Evan is just talking so much. It is mostly not understandable but he has been saying mommy, dad, gabe, oh yeah, I want that and a few other words more clearly. Now his speech is far from clear and it would probably take an outsider a while to understand him. He basically says words with vowels and misses the other sounds. This is caused by #1 his brain malformation and the speech area of his brain is very malformed. Other children with the same type of malformation-polymicrogyria usually have some sort of speech delay or are mostly non verbal. This new burst of speech is awesome and it is showing some cognitive maturity on  Evan's part which is so awesome as well. He has really made strides in the last 4 months. And we noticed even more once we started the ketogenic diet and got a better control on his seizures.
Seizures are doing awesome. Which means we aren't seeing them at all. He did have one after christmas and has had a few suspicious episodes. But really that is nothing compared to the crazieness we went through with him having 40-100 a day at some points. I have a love/hate relationship with this diet. I love that it is working and I hate that I have to weigh and measure all of his meals and mostly that I have to tell Evan no to foods or in some cases more food. Lately, he is wanting to eat so much and I feel like I should be encouraging that and not telling him no. But how can I not continue this diet if it is working. We see Evan's neurologist on January 10 and have an EEG on January 9th. I am honestly freaked out abou the EEG. I am worried we have lost our good control and Evan is having a lot of subclinical seizures which are the seizures we do not see but happen in his brain. This in not an unfounded fear because in March 2012 that is exactly what was happening. I will be holding my breath when we have the EEG until it turns on and I can see what is going on in that sweet brain of his.
We had a great November and December. I am happy that he is doing so well and I hope it continues well into 2013. Next post will have pics and some more fun info. I am trying to update this blog a few times a week.