Conversations with my son

Even though Evan cannot talk we still have conversations with each other, these conversations usually consist of him using a few signs, pointing or nodding his head yes or no and me asking questions and thinking in my head what would he be saying. For example we were sitting on the couch watching a show that I recorded for him called Horseland, I recorded it simply because it was about horses and I thought he would like it. So we played it and he was sitting on the couch and kept patting me on the shoulder and signing horse, he was so excited and I was thinking in my mind that he was saying "mommy, look at the all the horses, I love horsies." I would love to hear his voice and maybe someday I will hear him say Mommy. He does have a sound for me that he yells when he is looking for me, it sounds kind of like Ma, but it is definitley distinct for me. Evan is able to say vowels so everything sound similar.

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Justinich Look-alike Meter

We thought it would be fun to see how this worked with Rudy, Cynthia and I since we do not have a digital pic of her mom. Just shows you that this fun stuff is just that and not too accurate.

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Justinich Look-alike Meter

Funny that between Gabriel and Evan, Gabriel looks more like his dad and Evan looks both of us.

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Justinich Look-alike Meter

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An Eventful Thanksgiving

Well, we had a great Thanksgiving with the in-laws, it was small at our house and we watched movies after having dinner. The fun started around 10pm when I was laying with Evan in our bed. We were back to back when he started crying like he was in pain and I look at him and his eyes are doing the jumping thing and he is staring all the way to the left and knew immediatley that he was having a seizure, so I yell at Rudy to get in the room. I mention that we need to get the Diastat just in case and he say well it has not been 5 minutes it is only 10:09, so then Evan is still crying and staring to the left with his head turned to the left, it is like he was aware of what was going on but could not control his body. So then he starts with the gagging and vomitting and we get the Diastat. I just froze because I was not sure if I should give it to him and we were coming up on 8 minutes now so I decided just to call 911 and while I was on the phone with them he started coming out of the seizure. We brought him out to the couch to wait for the paramedics who arrived in a pretty decent amount of time. They took his vitals etc. and we were transported to Sutter Memorial Hospital, Evan was starting to return to his normal self and shortly after we arrived he fell asleep and woke up when they put the IV in but was asleep again a minute or two later. They did his blood work and found that his Depakote level was low so we are increasing his dose again and have to follow up with the dr. We left the ER around 3am, and I can't sleep even though I am really tired.
All in all, it was a good experience with the paramedics and the hospital although it was a long wait as usual. I think I know now that I should administer the Diastat and then call 911 if it does not stop or if he has other abnormal symptoms. In this case he was fine afterward and we probably did not need to go to the hospital but we were scared and unsure of what to do because has never had a prolonged seizure like that before and this whole thing of starting out with the eye movements and then progressing to the vomitting/gagging is a new development for us.
I think what bothers me the most is that his seizures are progressing and doing different more serious things even with the medication. I don't know if I will ever get used to dealing with the stuff we deal with because of Evan's special needs. So I have to say that I am thankful that my son is OK, that we are home and not in the hospital, for my husband and also my in laws who are watching Gabriel so we could deal with Evan. Speaking of Gabriel I wonder how he felt seeing his brother wheeled out of the house into an ambulance. Rudy said he seemed fine but it had to have freaked him out a bit. I will talk to him later today when I pick him up from Grandmas.
Update*** I spoke with Grandma and she said Gabriel was really quiet last night and she asked him what was wrong and he said "my brother" so he was really scared and worried. So much for an 8 year old to have to deal with, it is a lot for anyone to have to deal with really. I don't really know how Evan is going to be since he is still asleep. I am taking advantage of the time to just get some cleaning done and reflect on what happened and what I would do differently next time. Rudy and I talked about having a plan and basically we will give the Diastat at 5 minutes and then call 911 if it does not stop. I think we will be more calm next time and follow this plan that we have in place. Pretty crazy to be thinking I will be more calm the next time I have to call 911 for my son, but this is just part of the special needs world, I knew that Evan had a higher risk of having seizures and I knew that there would be the chance that I would have to call 911 for him. Knowing all this and talking with friends, hubby and Dr about it certainly did not make it any easier to do and I did panic a little bit when it was actually happening. As it usually is with Evan that just when I think we are going down a smoother path we get a big bump in the road, but we will get over this to. Rudy said he hopes there is not a next time and I said I am sure there will be, we have a special needs child who has only been having visible seizures since January and here it is only in the first year and we have had to call 911. While we can hope that it does not happen again we are now prepared with our plan of action. Enough talk about this incident. I am going to go clean up my house and check on my little boy.

Evan's Parent Teacher Conference

Well, on Monday 11-24 we had Evan's parent teacher conference for preschool and I will admit that I was very nervous about it. But it actually went really well.
Basically, Evan is on track to meet the goals that were set out for him in September. These goals are:
Drinking out of a regular cup and not tipping his head back while drinking
Using left hand to hold paper while coloring or using scissors
Toileting
Socializing with peers
Riding an adaptive bike

They keep a log at school and Evan has actually peed in the potty about six times at school, so now I am going to work on getting him some type of adaptive toileting system so that we can perhaps work on this at home as well. I would love to be done with diaper changes but I still have to figure out how Evan is going to tell me he is ready to go potty. I guess we will just have to put him on the toilet according to a schedule.

Evan loves other kids and does well playing with them
He is doing so well with drinking out of a cup and is not tipping his back too often and is able to take a verbal que to change the habit. We are however having problems with him working with his feeding therapist. He is totally non-compliant if she is there at school and tries to hit her, pushes his food away and just acts up. She is going to try it one more time and if he is the same way then we will see if she can see him at home instead.
Evan's teacher has a theory as to why this is happening, she thinks it is because Evan does not want to be different from other kids. At breakfast he does not like if the teacher brings his food to him already cut up, he wants to put his food on his plate and then let her cut it up.

At school they have a few different types of adaptive bikes but Evan does not like to ride them because they are different than what the other kids ride. They have a tricycle that has a second seat so one child can pedal and ride another child around on the bike. Evan tries to pull the other kids but gets frustrated because he is not able to pedal. When the teacher tries to get him to ride the adaptive bike he does not want to do it.
I think if Evan had any more language than he does now his frustrations would be a lot less, I always try to imagine what he is trying to tell me. I think it is great that he does not want to be different than other kids, I think it shows that he is aware of what is going on around him as well. And I am very glad that he does not get to discouraged easily either, this is something that will take him far.
One thing I am so nervous about is whether or not to put Evan in a special ed kindergarten or a regular ed kindergarten. I just feel that he will not be ready for it and the teachers seem to think that he will be. We do not have to decide until May and they will be setting up visits to various classrooms to help me make a decision.

Twilight Movie

Cynthia had a great time on Friday night as we went to see the movie Twilight. We both loved it. We went with my friend Francesca and a few other girls and we had fun. We topped it off with desert at The Cheesecake Factory and it was both of our first times there. It was yummy. One of the other girls brought her 5 week old baby so it was fun to hold a little one. My friend posted about going to see it again and I could almost do it. It was fun to do something with Cynthia.

Our new Cat

We have a cat - again. We were carving our pumpkins for Halloween on the front porch and we heard the meowing of this little kitten. I just have a soft heart for animals so we fed it and continued to do so for the next few days. I swore that we were not keeping it as a pet and it can be an outside cat. Well, it was cold outside so we let it come inside. And that was the beginning of the end.

The cat is now ours and we have again bought all of the needed items such as food and a litter box. This little contraption was given to us by Rudy's parents, and then we gave it to my grandma for her cat and she then gave it back to us. This new cat loves it. She is the sweetest kitty and is a bit scared of Evan though. She does not try to scratch or bite him though, she just runs away. Gabriel and Cynthia are pretty much hooked and they have litter box duty.
Our cat does not have a name yet(at least not one that I can post on here) I named her a name because she took a day or two to learn the litter box is where you do your business. It is all good now but she was almost sent to the pound because I am not going to have her going potty in my house. So for a name we are thinking Smoky or Tiger?

Friendship Spotlight

Ok, I am copying from my friend on this. I am sure she won't mind. I think this is a great idea. I don't have a picture though.

My first spotlight is going to be for my friend Karen Kiesel.

Let me tell you how we met.

We met when our two oldest sons were in Kindergarten together. While waiting to pick the boys up after school I would watch and be slightly envious of her having her two typical boys. We got to talking one day and she was saying how her almost 3 year old was not talking but she was not worried because her older son did not talk until 3 years old either. I really tried to foster this friendship because I really wanted be friends with moms of typical kids for Gabriel's sake. So that summer which would have been the summer of 2007 we began spending more and more time together and became friends and we both had two boys who were about the same age so it was nice. I just have to laugh because that summer Karen became the parent of a special needs child, or more correct her son was diagnosed, and she was brought into the world of special needs with me. Even though Evan and her son have different diagnosises I was so glad to be there to help her through the process of getting evaluations from Alta and the school district.

Fast forward to now and we are in a carpool together and most weeks we have a coffee or run errands together once a week. So here are the reasons Karen is a great friend and all around person.

1. She is always honest and straightforward
2. She listens
3. She gives ideas when I have a problem
4. She is always finding new ways to help her son
5. She always helps out with Gabriel in a pinch or just because
6. We treat each other for coffee every now and then
7. She makes me laugh
8. She understands my life
9. She is an awesome Mom
10. She finds ways to do things for her kids even when if seems impossible because of money or other reasons
11. She takes Taekwando

I am so grateful that when I tried to make friends outside of the special needs world I found Karen and now she has joined me in the special needs world we can be supportive of each other.

Stay Tuned to see who is in the spotlight next week.

We got it!

Well, the IHSS person has left and she said she would grant our case, which means I will be getting something for taking care of Evan. I am so happy, I am sure it will not be too much but I am happy to just get my foot in the door.

What does it mean to have a Special Needs Child

I was having this conversation with another Mom. What does it meant to have a special needs child?
Basically when your special needs child is born or diagnosed with their "issues", you are thrown into a whole new world that you probably did not know existed.

You are constantly going to appts for different specialists, therapy appts, sick child appts, ER visits and tons of extra things that do not usually happen with typical children.

Then there are the different types of equipment that is sometimes needed, walkers, wheelchairs, feeding chairs, gait trainers, standers, orthotics, and splints etc. And don't forget the stares and/or comments when your child is using these products.

And of course there is the constant worry that some little weird thing is something serious, for me it is seizures. Is that blank stare a seizure? Or is the twitch a seizure? When is the big one going to hit and will I be able to handle it if it does? Is Evan breathing too fast? Are his lips looking a little blue? Is he going to sleep through the night tonight? Is he going to get into food that will make him choke? What if someone gives him something that will make him choke? Did he just aspirate and is he going to get pneumonia? I could go on and on but I would probably meet the word limit.

Other issues to deal with are the follow up phone calls or emails to make sure equipment is being ordered or that the people that need to turn in paperwork are doing it. Phone calls to make sure people do what they say. Different people and therapists coming to the house. Spending more time in the car than you want to. Finding a capable trustworthy person who will show up when scheduled to take care of your kids.

Dealing with the ups and downs and moods that accompany this life. Dealing with friends with typical kids who do not always understand and make comments that hurt your feelings. Even though you know this is not their intention it still hurts. Feeling like you can only relate to others with special needs kids.

Trying to deciper cries from your child who should be able to talk and tell you what they want. Crying yourself when you just can't figure it out. Spending time and money on alternative treatments and researching new things and old things about your kids diagnosis.

Knowing that you are experiencing something that most people do not get to. You have this awesome kid that teaches you so much. The greatest smiles. Support from family and friends.

I know this sounds negative but this can be a really lonely world sometimes. Knowing that your child cannot always participate in every activity or that even if a place says it is handicapp accessible it is not always the case. I do not know what I would do without my group of special needs moms, they are the ones that truly understand, it does not matter what level of functioning our kids are at or if one is higher functioning than the other, we all support each other and help each other through the hard times.
And I am not forgetting my family and other friends either, we would be lost without them.

I have to tell a little story that just warms my heart. Yesterday Gabriel was talking about how it would be if Evan could go to school with hima nd he asked me if it was possible to fix what was wrong with Evan's brain. I had to tell him no, that his brain did not develop correctly and that is why he is the way he is. Gabriel was a little dissapointed. Oh, how I wanted to tell him yes we could fix it and he could have the little brother I am sure he misses just like I sometimes miss the little boy I imagined I would have. But just like me I know Gabriel would not change Evan for the world. As I was typing this I hear Gabriel trying to figure out what Evan is trying to tell him and the other day he built Evan a train track because he was bored. I just smile and think how lucky I am to have the kids that I have. Cynthia is good with Evan also and takes him on walks and helps us out a lot. I know that her role will change and I hope that Evan's struggles help Gabriel and Cynthia appreciate the little things and also be tolerant and understanding of those who are different from us.

Cross your fingers

Tomorrow we have an appt to see if Evan qualifies for IHSS which is a program that will pay me to take care of Evan. This is for children with special needs and it is something that I hesistated applying for because of Evan's capabilities. But as his behavior has become more and more to the point where we cannot leave him alone I decided that it was worth a try. It is hard for to work outside the home and if I can get some sort of income for what I do for Evan that would be so great. It would certainly help us out financially. Anything would be great until I can work while Evan is in school all day. So I wronte out this schedule of what I do for Evan and how long it takes, and I am going to use this as reference tomorrow.

Evan’s Daily/Weekly Schedule

6:30 -6:45 am – Wake Evan up
7am – change diaper, get Evan dressed and put on orthotics (20 minutes)
7:15 am Prepare thickened liquid or yogurt with medication in it (feed yogurt)(10 )
7:30 am brush teeth (5 minutes)
7:40 Bus Arrives (Monday –Thursday)
11:45 am Bus drops Evan off (Monday-Thursday)
12noon change diaper (7 minutes)
12:30 prepare lunch and feed lunch to Evan (30 minutes)
Keep watch over Evan
2:30 change diaper (7 minutes)
4:30 change diaper (7 minutes)
5:30pm prepare dinner and feed to Evan (30 minutes)
7pm give bath (20 minutes)
7:30pm get dressed, change diaper
8pm prepare and administer medication
8:15 lay down with Evan until he falls asleep
Wake up in the middle of the night to give Evan milk or console him during crying or seizures
Weekly appointments
Tuesday 1pm OT at CCS (30 minutes x 2
Friday 1130 am Hippo therapy at Ride to Walk (1hr drive x2)
Dr. appts during the month
Behaviors
- Open up doors
- Turn on gas stove
- Flood toilet and sink
- Eat food that is dangerous
- Open refrigerator
- Turn on water (hot)
- Run away down the street and not stop until a parent catches him
- Run into street
- Has to be in wheelchair out in community


My hope is that I can get about 40 hours a month but I will take what I can get just to get my foot in the door. Wish me luck.

Update on Dental Work

Evan's dental work went really well. He walked back to the surgery area without me just fine, he was holding the hand of the dentist. Poor guy did not know what he was in for at all. They gave him a little gas to relax him and then put in the IV to start the IV sedation. I believe the dentist also numbed his mouth as well. They took x-rays which is something they cannot do when he is awake. He ended up getting silver crowns on all of his back teeth and a small filling on his front tooth which was chipped and the dentist fixed the chip so he has a whole tooth now. He woke up fine from the anesthesia but he was really cranky and I think he was in some pain, the nurse gave him some stuff to help with the pain and I think it finally kicked in about 30 minutes later. The plan is for the crowns to prevent any fursther cavities.

Grandma Josie met up with us and took us to McDonald's and got Evan an ice cream and a kids meal which he only wanted the toy from. Evan was back to his old self today with the added look of silver teeth.

Dental Work Today

Evan has to have dental work done today. Because of his special needs he is going to be put under anesthesia for this procedure. He has always done fine with anesthesia but there is always a first time for everything, especially with a child like Evan. I feel guilty that Evan has cavities and even has to have this done, but I know that I am doing the best I can. He makes it hard to brush his teeth especially in the back where most of the cavities are and then you add in the fact that he is a drool monster and packs food like a little chipmunk. So when we went in a couple weeks ago for the pre-op visit the Dr. decided that he wanted to put silver crowns on Evan's back teeth to help prevent further cavities and I felt that was a good idea because if his cooperation in teeth brushing does not improve then we will just be back in this position again in 6 months to a year and I do not want to have him under anesthesia uneccessarily. So our appt is at 9:45 and Evan is not allowed to eat which is hard for him especially when others are eating. I will be there by myself in the waiting room reading a book or talking on the phone. Rudy has to work and this is not a huge thing and if I need to call him he is only in Elk Grove while I am in South Sacramento which is only about 15 minutes apart from eachother. So I will let everyone know how it goes.

8 Things

I was tagged by Francesca

8 TV Shows I watch(not in any order)
1. Army Wives
2. Cold Case
3. Without a Trace
4. Law & Order SVU
5. The Starter Wife
6. Days of our Lives
7. Jon & Kate Plus 8
8. 17 Kids and Counting

8 Things that happened to me yesterday:
1. The boys spent the night at my MIL's
2. I spent a nice evening with my husband
3. I did not clean at all( I took a day off)
4. I scrapbooked
5. I watched TV without being interrupted
6. I got freaked out on the freeway driving in the rain and saw another car spin out
7. Ate chinese food for dinner
8. Slept most of the night

8 Favorite Places to Eat:
1. BJ's
2. Chipotle
3. Buca di Beppo
4. Panda Express
5. Pizza Guys
6. My house
7. My mom's house
8. Out with my hubby or friends

8 Things I am looking forward to:
1. Christmas
2. Tuesdays from 8am-12noon
3. Next time I get to go scrapbooking
4. Having a little more money in the budget
5. Seeing my extended family
6. Christmas Shopping
7. Faces of the kids on Christmas morning
8. My hubby being on day shift for good

8 Things on my wish list:
1. House problems to get better
2. Rudy to make a little more money
3. Being approved for IHSS
4. Healthy Parents
5. Healthy children
6. For my choices in the election to be the winners
7. A scrapbooking day with my friends
8. All of the special needs kids I know and even the ones I don't to make progress and have a great year.
9. A new wheelchair for Evan

8 people I tag:
Heidi, Rachel, Melanie, Chasity, Jannette and anyone else who would like to participate.

Take the Quiz and Share Your Results!

I think I was one of the last people I know to get on the Twilight bandwagon, I bought the first book with a giftcard I found and then halfway through that book I knew I had to get the rest of the series. I saved money because I bought two in paperback and 2 in hardcover and I had giftcards to cover most of the cost. I really liked these books and I thought they were very tastefully done especially since I usually read pretty racy romance novels. It is nice to see an author writing about the morals that I find important(at least in the romance department). I can't wait to see the movie. I am going to let my 16 year old daughter read the books and we are going to see the movie together.

Halloween 2008

We had a pretty quiet Halloween this year, we got together with my sister and her kids and our friends the Kiesels and went Trick or Treating around our neighborhood. It started to rain so it cut our time outside short but the kids still had fun. Evan wanted to ride in his wagon the whole time and it was hard having to lift him in and out of it at each house but it was convienent for the walk back and much easier than having to carry him the whole way.

Here are all the kids, we have two Drs.,(Nathan & Celeste) a cheerleader(Mia), Thomas the Tank Engine(Evan), Karate Kid(Connor), Plo Koon(Gabriel) and Darth Vader(Nicholas) from Star Wars

Gabriel and Nicholas having a light Saber fight

Cynthia in the Greek Goddess costume that I made her

She went to a Halloween Party at her friends house and had a lot of fun

Pumpkin Farm

We went to the Pumpkin Farm with some of our friends on Sunday the 26th.
The friends that we went with all had special needs kids so it was great to be there with people who understand how these outings can be a challenge at times.


The day before was Evan's Birthday party and towards the end he got really red in his face and hot and was not sweating and it took him an hour or more to get back to normal and that was with us putting a washcloth on his head and taking off his shirt and shoes. Anyway we were a bit worried that the same thing would happen on this trip, it did not but he got a bloody nose which kind of put a damper on things.

I did not get as many pics as I wanted, and I missed the pics of the kids in the pumpkin patch area. But things were just a little hectic.

The place that we went had animals to feed, a corn maze, hay ride, train ride, haunted barn and fun stuff to do. Evan loved the horse.

Not the best picture of Cynthia but here she is feeding the goats

The boys feeding the animals


Gabriel with our friend Bailey

We went with about 5 other families it was great. It sure was hot though.