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.

Catching Up

I haven't been updating this blog much because we are without a computer and it is too hard to do on the phone. So a quick update on my sweet little boy Evan.

Evan turned 8 years old on October 22, unfortunatley we were in the hospital for seizures but they made it so special and the bonus was we got to go home that day as well. The Child Life team at Sutter Memorial is awesome.

They made a huge sign for him, He loved it.

He also got a pillowcase full of toys and stuff.

The Bucket full of Dinosaurs was his favorite.

 

We had a small birthday party for him a few weeks later at home. It was nice and small and just what we needed.

 

Ketogenic Diet-

 

 Back in September when we started the Ketogenic diet it was more of a modified Atkins version of the diet. When Evan began having clusters of seizures again in the middle of October and we ended back up in the hospital we decided along with the dietician to switch to the more traditional ketogenic diet. This means that Evan has 4 meals a day and each item is weighed in grams. It is a high fat, low carb and low protien diet. It is a lot of measuring especially if I want to make him a recipe such as pizza, pumpkin pie, pancakes, muffins etc. I made him a Keto cupcake for his birthday party and he loved it. He was content to eat his cupcake and did not make too much of a fuss over the fact that other kids had different cupcakes.

So far the biggest challenge we are facing is that Evan wants to eat more than what is allowed. But his dietician has assured me that his calorie intake is the same. We usually just try to distract him until he can eat again. Evan still gets formula as well.

 

 

So the big question you are wonder I'm sure is how are the seizures now that we have started the traditional diet?

 

I try not to get too excited or get my hopes up but I am happy to report that seizures are being held at bay right now. We had an EEG in early November and visited the neurologist on November 20th. He was excited at how great the EEG looked while Evan was awake. We eren't able to get Evan to go to sleep so we will do that in a couple of months at our next visit. I have noticed some intense staring periods where I come upon Evan and he just has this horrible blank stare on his face and he usually takes a few seconds to come around or answer to his name. I'm pretty sure these are seizures but as along as they don't start coming every day or in clusters I'm happy.

 

School-

 

Evan seems to be perking up and being more active in his classroom. I am not getting daily phone calls about him so that is great. Right now I am working on getting Evan some important supports that he needs at school. The school district wants to move Evan to a lower functioning classroom.  The whole process is frustrating. I just want them to look past his medical needs and see the smart boy who can and will learn. I was thinking about just giving in because I thought they were right and he did regress due to seizures but after visiting the classroom they want to move him to I changed my mind. He is at a higher level than most of the kids. While I love the school I am afraid he will lose progress if he is not being challenged. I'm in the process of talking with an advocate to see what my next steps will be.

 

Here is a pic of Evan's birthday party and his pathetic little Keto cupcake that was too soft to hold the big old 8 candle I bought. LOL

 

All in all, life is going very well for us and Evan. If we can keep up his good run of few to zero seizures I will be thrilled.



Ketogenic diet update

So far Evan is doing ok on the ketogenic diet. He has some favorite foods that he can't have but he is getting used to the foods he can have.
This week we r noticing an increase in seizures. So we met with the dietician & have a plan. I definitely see an improvement in seizures when his ketones are higher. Behavior has been better too. I hope we can make it work for us.

Common Misconception about raising a child with special needs

It is hard for me to understand how someone can think that a child who has special needs & requires extra care & attention would be a burden on a family or that parents would feel relief if the child passes on. Every child I've met that has special needs is so happy & love life. They have a special something about their personality or spirit that makes you smile & feel happy. I see it in my own son & I've seen it in friends children.
Yes, a child may need to be carried or lifted & it may hurt the back. There are solutions to that. Yes, the child may not have good vision but they "see@ more than we know. Yes, a child may not talk but they say so much. They may have a feeding tube, a trach or other tubes etc. Yes we as parents may have to fight endless battles to get what they deserve. We may cry in our rooms at night. But we get up every morning put on a happy face & get ready for whatever the day holds.
I don't think it is always easy to raise these special children, it is hard & exhausting but it is usually not the children that make it so hard it is all the fighting insurance & red tape that is hard. It is seeing your child cry because they are being put through a medical test or them not crying because they are so used to it. It is hard watching them have countless seizures or even one seizure.
It is not the feedings or suctioning or diaper changes or therapy appts.
The best part is the child. The sweet smiles, the cuddles, the amazing spirit this child still has & the fight. It is something not everyone is lucky enough to experience. Some wont ever see it. A reality that we have to face is that our children's time on earth could be shorter. Some parents know this as a certainty & some don't know if it could happen but know there is a chance. Of course there is a chance anyone could die at anytime. But some special needs children are medically fragile, they get sick easier stay sick longer & r more prone to hospital stays due to illness. Others have epilepsy & that is a risk as well.
All of our children deserve a happy & full life. A disabled child needs more care in most cases. Being Evan's mom is so awesome! He makes it so special.

Home Again

 So we finally got to go home yesterday(friday). Evan's dr came in on Thursday evening and we talked about a plan for once we got home in regards to seizures. His Dr. wants me to call if he has more than 5 in a day and if I see more than 10 I need to get his rescue med. Evan did great with seizures and then about 30 mins after the dr. left he had one and then about 7 more the rest of the night. Of course it happens that way.

Evan hanging out in the ER, not too thrilled with the O2 monitor on his finger.

 

Evan always like me or his dad to hold his hand when he is trying to sleep. I think it comforts him. And we are of course happy to do it.

Pretty out of it from the dilantin he got on Sunday night

Still pretty out of it on Monday too.

Then we head to the PICU and give him lots of Vallium and he needed a bit of O2

Still kind of out of it on Wednesday but he hadn't eaten either. Was just getting IV fluids

He was still needing a bit of O2 support so the nurse did what they call blow by. She puts the tube in a cup and then puts it near Evan's mouth and he breathes in the O2 and it helped.

You can see he is feeling better because he was using the cup as a telephone. It was so cute. He was also twirling it around.

 

So needless to say we are so glad to be home. Seizures are still very few if any at all. But we have been here before. Evan is doing well tolerating the Ketogenic diet and not getting to eat anything he wants. He still is not wanting to eat too much so that helps. He loves hard boiled eggs and he can have those so that is great. He can have hot dogs and those are one of his favorites. My hope right now is that we can keep good seizure control and not have to be back on the EEG or in the hospital anytime soon.