Make A Wish Radiothon August 2010

In August 2010, we got invited to participate in the Make A Wish Radiothon put on by KNCI, I have listened to this station and this radiothon for years. It was so nice to be a part of it.

Evan and Mommy up on the stage talking with the DJ




Telling our story

Look at my big boy, he is almost as tall as me.

New Seizures

*To all my Facebook friends sorry if this is a repeat of what I have been posting about all week but I am using this blog as a journal and a resource for other people who are interested in reading about the special needs life. And also family and friends to keep up on our lives. Thanks for reading.*





So about 4-5 months ago we started noticing a new behavior in Evan. His head would go back and he would lose his balance and sometimes fall. It would only happen about 3-4 times a month, and at that time I thought maybe these could be seizures. I ended up calling the Neurologist's office after Evan had a prolonged seizure about 4 weeks ago. When I talked to them about the seizure I asked about doing an EEG to see if these new behaviors were seizures and to also see if his EEg had changed at all. The next day I got a call back that the Dr. would order a Video EEG and someone would be calling me to set it up.

Last week on Tuesday I got an email from Evan's teacher that he had been falling a lot at school and did I think that maybe he was having small seizures. I told her that I had suspected it and I was working on getting an EEG. The next day she called at 11am (only 3 hours after school started) and said that he was constantly falling and it was becoming a problem. I decided that I should pick him up. Already after Tuesday I had decided to call and see what the progress on the EEG was. I talked to the nurse about what was happening and she said she would inquire as to what the hold up on the EEG was. I got a call back from her and she gave me the number to Digitrace which is the company that does the EEG. This is so we can do an ambulatory EEG vs having to be stuck in the hospital. I called the company and was told the person who schedules those is out of the office at lunch. I left a message but she did not call back that day.
The next day Thursday I got a call from our Neurologist's office again and they wanted to know if I had heard from Digitrace. I told them not yet but I would be calling again. At that time I was at the lab with Evan getting his med level checked. The nurse gave me the number for the EEG Tech Dawn, and I called her. She was very understanding and scheduled Evan's EEG for Monday morning at 10 am. (monday 9-13). Dawn is so awesome and she also has a child with special needs who has seizures so she gets what I am going through.
Over the weekend on Saturday Evan had about 3o seizures, at that time I was not for sure that they were seizures but my gut was telling me they were. On Saturday afternoon after seeing too many of these seizures I decided to call the Dr., I was not sure how many were too many. The Dr. said he was not sure they were seizures and thought maybe it was a Tic. I was pretty certain he was wrong and decided that he should get the benefit of the doubt since he had not seen them yet. And since we were doing the EEG on Monday I could wait it out. It was so hard to wait and see my son suffer these spells over and over again. Thankfully, they were short and did not affect him except for him falling. I was so happy when Monday morning came. I was worried that he would not have any spells while the EEG was on. Murphy's Law and all that. Well, turns out I did not have to worry at all. I logged 23 episodes in a 22 hour period. Since this was a Video EEG we had video of it also which was great. Evan's Neurologist sure got an entertaining look into our family life. LOL.
I have to reiterate what a great Dr. we have. And this includes the office staff and the other Drs. in the office as well. Once Evan was disconnected from the EEG, the disc was given to the Dr. later that day. Evan was disconnected at 10am and the Dr. called and left me a message at 1:41pm, 2:37pm and called again around 4:30pm to tell me what the results were. I was so impressed that he called 3 times to make sure he got a hold of me.
So the Dr. reported that Evan was having seizures and he wanted to see him in the office the next day to talk about medication options. He told me that the seizures were starting on the right side and then progressing to both sides of the brain. He asked that we give Evan 1 dose of Diastat (rectal vallium) at 5pm, and then another dose at 8 or 9pm to see if that would help slow down the seizures. Already on Tuesday at almost 5pm he was at 12 seizures. So we gave the first dose of Diastat and then about 10 minutes later Evan had a BM so we don't think too much got absorbed. The 2nd dose was given at 8:30pm and it sure made Evan lethargic and floppy. It also made him really cranky and he had a harder time going to sleep. He woke up fine and so far today has not had any seizures.
At our appointment with the Dr. today. He told me that Evan's EEG was the worst he has seen on Evan. He said that he is having almost constant activity while sleeping. He showed me a few sheets of the EEG during seizures. I love this about him, how he explains things and shows visual images not just words. So we talked about medications. He wanted to put Evan on a medication that is approved in other countries but not yet in the US, it is perfectly safe and has been used in Europe and Canada for the last 10 years. But it would cost us $50 a month and that is just not in the budget right now. So we decided to try another drug called Topamax and see how that works.
So the plan is for Evan to take his current med which is Depakote, instead of taking it 2x a day he will now be taking it 3x a day. Adding to that will be the new med also 3x a day. Along with these he takes his medication for drooling. So now I have to arrange for him to have medication at school. I am going to start this process tomorrow and then have the school start giving him the med on Monday. I figure it will take a few days to get it going.
Finally, we talked about the plan of action for cluster seizures and when to use his Diastat. So the protocol will be to use the oral Diastat when he has had 3-5 seizures in a day and then if that does not stop them I can give the rectal Diastat or give it for more that 5 seizures. This is such a weight off my shoulders because I felt so helpless watching him have 20 seizures a day or 7 seizures in an hour and not being able to do anything. Now I have a plan and it seems that this would work to stop the clusters.
I really hate seizures but this is just a part of our life so I can hate them but I still have to deal with them. Having Evan have multiple seizures in a row and have them during the day while he is awake is new territory for us. But I feel that I am doing all I can for Evan to help keep the seizures under control. Hopefully, these new meds and stuff will work.

Toys For Sale or Free

This Fisher Price Pig counts and also plays music when kids put the coins. We are missing 2 green and 1 orange coin-Free

These are the cool blocks that you match together to make certain sounds-$5

Same as above just farm sounds -$5

Ok, we got this put it all together and it has been sitting in boxes with all of our other Trackmaster train stuff, so I am not sure if every piece is ther but I am 98% sure. This along with all of our other Trackmaster stuff is $75

Same goes for this set, I am 99% sure we have all the pieces to make this track but not 100%. Never the less, I have 2 big boxes full of trains, tracks and buildings for the Tomy/Trackmaster system. You could buy this and your train lover will be in heaven. This set along with the set above-Thomas at Action Canyon is $75. It is probably about $400 worth of stuff. I also have the Thomas and Percy Remote control trains in with this stuff as well. Really great for fine motor for our special needs kiddos.

Ok, I will take off my sales lady hat now LOL. Please contact me through email or Facebook if you are interested. Oh and I also have a bag of pegs but I cannot find my peg board.

Evan's Health Concerns

Good thing he is so cute!!!

So Evan has been healthy the last couple of years, with only an occasional cold that usually goes into his respiratory and causes him to need breathing treatments and sometimes prednisone. He did have H1N1 this past winter but came out of it with no problems. His seizures have been under control as well.

However, I think he is having migraines which are causing him to vomit then sleep which is what he does when he has seizures but there is not physical seizure activity to say for sure if it is a seizure or migraines.

Lately, I have noticed Evan wheezing a bit when he is excerting himself such as walking fast. I even bought a stethescope so I could listen to him to see if I hear wheezing or any crackling. I am beginning to have to thicken his liquids again as he is having a really hard time with thin liquids in that he is coughing a lot. The other day he coughed so much that he caused himself to have bloody nose. Even this morning when I thickened his juice he was still coughing and sounding rattly or wet until he had a good enough cough. He does not always have the good cough. I am thinking we need to get back in to see the pulmonolgist and perhaps do another swallow study.

I have worried about his health detiriorating and I do not know if his brain malformation causes this or not. I know plenty of kids who are not as mobile as Evan but have a similar brain malformation and a lot of them have g-tubes and some got them when they were a little bit older. Not that I would be against a g-tube, it would make medication so much easier but I don't want one if it means that we have it because Evan can no longer drink by mouth. I probably would not even be concerned if his coughing had not gotten bad over the last few months.

I think Evan's health is always on my mind whether it be seizures or anything else. But I have learned to just trust my feelings because they are usually correct.

That Boy- Evan

Look at that face! Evan is the sweetest boy. He shares in everyone's emotions, if I am crying he will come up and give me a hug and sometimes cry with me. Which makes me cry even more. He will go up to a smaller child or a friend if they are upset and give them a pat on the back or give them a hug. He has started giving some kids kisses. Last week he gave one of our baseball friends a kiss. Now mind you a kiss from Evan is bound to be wet, slobbery and open mouthed.

Evan was my 10.9 lb baby and he was my most painful and eventful labor. The nurse probably never left my room. I was dilating really fast, Evan had mecconium staining so they were watching that as well. Plus, my epidural did not full work it really only took the edge off of the pain. Anyway, he came out and was reddish blue if that even makes sense but did fine and 2 days later we took home this baby not know what life had in store for us with him.

I remember that once Evan hit 4 weeks he seemed to start getting sick. First he had a bad cold and was breathing weird to me and I take him into the Dr. and he ends up having an ear infection. I was giving him breathing treatments and it seemed from November - the end of January we were in the pediatricians office every week. Finally, at the end of January they gave him Prednisone and that just seemed to be the fix that he needed to kick his illnesses. So after than life went on.
Evan was diagnosed with a brain malformation and cerebral palsy at about 10 months old, and we then got into all of the therapies, dr. appts etc. Evan did so well and had a great team.

Evan is now 5 1/2 and he is such an awesome kid. Evan is basically non verbal in that he does not have a functional speech, but he has about 10-12 words that he says off and on. He is smart and very aware of his environment. He loves other kids and other people. He has the greatest smile and laugh. He loves his brother and sister and like every little brother he is into all of their stuff and sometimes hurts his big brother because he is wrestling with him or throwing stuff at him.

Even though Evan has challenges and is often times a challenge himself, I would not change him for th world. He is such a blessing to us and has taught us so much how to not take the simple things for granted. Often times the stresses that come with raising a special needs child are from the red tape and all of the other problems that we encounter getting everything the child needs and not from the child itself. It is that way for Evan. Sometimes when I am having a bad day, I just get a hug and a smile from my sweet boy and I feel better for a while. I can't wait to see what the future holds for Evan. As long as he is happy and healthy that is good enough for me.

This Boy- Gabriel

This boy is the sweetest, most caring, loving, smart, compassionate, imaginative, handsome boy that I know. He is my first born son, my big 10lb sack of potatoes baby and I love him with all my heart. He is Gabriel Rudolph Justinich.
Gabriel was my 10lb, 10 day late baby boy. He was the cutest, sweetest baby the perfect 1st baby. He is a great 9 1/2 year old right now. He is so caring to his little brother who is Evan. Evan is 5 1/2 and has special needs. He has cerebral palsy, seizures and is verbally impaired. Because he has a brother with special needs I think this gives Gabriel an earlier learning of being compassionate, understanding and accepting of people's differences. Gabriel from what I can see is really friends with anyone. He makes friends very easily and seems to be friends with both girls and boys.

I am a little worried about Gabriel as he has developed what I think is a mild-moderate case of anxiety. It manifests itself in different ways. He has had a lot of constipation issues over the last 9 months which resulted with him being hospitalized for some medication to help him have a BM. He had to have an NG(nasogastric) tube placed down his nose into his stomach and the medication administered from a bag through the tube to his stomach, and then after about 9 hours of that he started going to the bathroom. The goal was to get him fully cleaned out and keep up a regimen of Miralax to keep him regular. This has worked well, with just one flare up of the constipation where I was using a product called magnesium citrate to clean him out at home. The experience in the hospital is not one I would like to repeat. Since school has been out Gabriel has been having pretty regular BM's and has not woken up with stomach aches or gone to bed with stomach aches and I can't really figure out if there was something going on at school or if he wanted to stay home from school so that he could spend time with me. I had talked to his teacher about Gabriel having any problems with other students and I had also talked with Gabriel and neither had anything to say about issues at school being the reason Gabriel did not want to go. I even had to go as far as telling the office not to let Gabriel call home unless he was running a fever or really sick. I felt bad but Gabriel was missing too much school.


I have been noticing an increase in Gabriel's anxiety over the last few months. Well, maybe I should backtrack to June 2006 when we were in a car accident and Gabriel was about 5 years old. He was really traumatized and would sit in the back of the car and say"please stop, please stop" when I would be coming to a stop light. He freaked out everytime we had to go on the freeway and was always asking how long we were going to be on the freeway. This went away after about 6 months and I did not really see too much of this after that. Now that I think back he probably started having constipation issues that were him having a stomach ache and then feeling better once he had a BM, but these were probably 1 or 2 times a year and then increased a little bit over a 3 year period, so maybe he had anxiety and it has been manifested as constipation.
Now in the last year it has increased and so much more in the past 3 months. From being really worried about going to the Dr. and asking me questions about what they are going to do, to really freaking out about getting blood work done and don't even let me tell you about how he was when he was admitted to the hospital. It was so heart breaking.
Now, he is showing more and more anxiety over his brother and him having seizures when he is staring off or doing something weird. He will look at me and say Mom are you sure Evan is OK. We recently got a pool and Evan is swimming with his head under the water and Gabriel will pull him up because he is afraid he is going to drown and Evan will be smiling and happy. I watched Evan in the pool and I could see that he could guage when he needed to get up from the water. Gabriel anxiety has been showing up more and more in regards to Evan.
So what I am going to do about this. Well, I think he needs to talk to a counselor and probably someone who deals with children and anxiety. I think it will be good for him to talk to someone and maybe help resolve some of his fears.
I also think it would be good for him to have other kids to talk to. He does have 2 friends who also have younger brothers with special needs but neither of those boys have seizures or the other issues that Evan has such as aspiration risk. So I want to look into sibling groups.
I really want to help Gabriel get over his issues because he is such an awesome kid and has such a bright future ahead of him and I don't want anxiety to inhibit him in anyway.

Frustration with School District

I just have to share my frustration with the school district. First of all the communication between myself and the program specialist is basically one sided. I even got up the nerve to tell her that I was frustrated with the lack of communication at Evan's IEP and that still made no difference as I have sent an email regarding getting outside or additional speech services for Evan but have not received a response. I am going to send another and then start calling in the beginning of August. It is ridiculous though.

My second issue for the 2010-2011 school year(because 09-10) would be a whole other post. Anyway, because of Evan being on the bus for an hour each way this year I had inquired about a bus attendant. I asked because Evan usually has his seizures going into or coming out of sleep and he will be likely sleeping on the bus sometimes on the way to school and 98% of the time on the way home from school. His new school day is from 7am-3:30pm(this includes bus time). I met with the nurse last month so that we could discuss the reasoning for my requesting a bus attendant. So anyway, she calls me the other day and says she is going to put in the information to the program specialist and then that person will make the decision but that she(the nurse) is going to also suggest perhaps moving Evan to a school that is closer to our house so that the ride will be shorter. I basically tell her that is not an option because I am very happy with the school he is in now and I love the teacher and evan loves the school so far. She says "this program at Castello is really good as well." I have to get more firm and tell her that in no way am I budging on the placement for Evan and I also bring up the fact that his ride from Franklin (his Kinder full inclusion class and our home school) to My Friends(Evan's Daycare less than 10 mins from school) was almost an hour long so how can she guarantee me that he would not be on the bus long enough to fall asleep if he went to Castello.
Basically, the conversation ended with her saying that I should call her if Evan starts having seizures on the bus and then we will look into in then. She did not really do her job, basically her solution was not acceptable to me so the subject was dropped. It is ridiculous. I am going to just let it slide for right now because it is going to be summer break and I am dealing with enough trying to get ready for my surgery but if Evan has any seizures or if I notice anything weird going on I am going to be back at pushing the issue and it will not be a pretty picture. Look out for the lady with the cane and a new hip.