You are a Strange Kid!

The other day we had a doctor’s appointment Jordan’s Neurologist.  First we talked about the problem with her eyes.  He like everyone else thinks there might be some connection between her eyes and her seizures although all of her blood work comes back normal.  He called her a strange kid, which she didn’t seem to mind.

She has a few questions for him and the biggest one was swimming.  I think she has wanted to swim from the moment she could talk.  She loves being in the water and loves pushing her limits even more.  We have been letting her swim in the back yard for a few days now so I was really interested to see what the doctor would say.  He told her she could swim, although not very long under water, which made me happy because I am constantly telling her to not swim underwater.  After talking some more she said “Can I dive?” and he said “No” Another point for mom and the doctor being on the same page.  She asked about riding a bike, which she can do as long as we watch her like a hawk.

The appointment went well and he decided we need to get her off another medication.  Over the next 2 months she will be coming off the Topamax.  Keeping our fingers crossed that everything will go as well as the last time.  He also doesn’t want to see her for 6 months.  While I am happy about this because it means she is getting better I am still a little scared.  I know he is just a phone call or email away and it still doesn’t make me feel better.  It is like when we left the PICU.  You become so comfortable with the doctors and the security they give you.  Moving on means something good yet I still am afraid.  

She has gone 6 months without any seizures and every day we get away from the seizure the better off she is.  She is so excited for school to be almost over and she can’t wait for summer to really begin.  There will be lots of time swimming in the pool, riding our bikes and just having fun.  We go back to Boston for her eyes in a week.  Maybe the blood work they did will have some answers although at this point I don’t know that I care.  She is happy, healthy, kind and funny.  She makes me laugh, cry and sometimes even scream yet I wouldn’t trade it for anything.  Enjoy your summer and we will keep you posted.

Another First

Last Friday night Jordan had her first sleep over at someone else’s house since she first got sick. She has been asking and was very cute about it this time. She called me on Tuesday and said “Mom, Sarah and I were talking and since her mom is a nurse can I sleep over. If I have a seizure she will know what to do and then she can call you.” When her friend’s mom got on the phone she was like “I am glad they have so much faith in me.” Since it was a Tuesday I dodged that one.




Well of course although Jordan has short term memory loss she didn’t forget this conversation so last Friday night she slept over her friend’s house. She actually went over right after school and I did not see her at all. Jeff picked her up from school while I was taking Devon to art. When we got home she was already gone so I guess I didn’t have time to even think about it. I did want to call her right away; I wanted to drive over there just to make sure she was okay. I know crazy mom that I am I could not get out of my head all the bad things that might happen. I ended up in bed early and actually getting good night sleep.



The next morning Devon and I left before she even called; he had a soccer tournament at 8:30. I finally couldn’t take it anymore and called Jeff about 10:00 to see if he had heard from her. He had and she was fine, she ended up spending the day with her friend and not coming home until about 4:30. She was fine and had a great time, another sign of her strength and determination to not let this seizure disorder bother her.



As for Devon his team did not do that well at the tournament. It was definitely a learning experience for his team and his coaches. It was a beautiful day outside and I can’t wait for the weather to continue to be nice. Our craziness is just starting with all the kids activities, although I would not have it any other way.

Frustration

Jordan has been back at school for about 5 weeks now.  She is doing great and enjoying being with her friends and being a kid again.  The problem is that the school department now wants to take her tutoring away.  I for the life of me cannot figure out why since she has missed like 100 days of school.

So I started calling the Assistant Superintendents Office because he is the one that made the decision to stop tutoring.  After calling 4 times I wrote a letter to the Superintendent, which I had planned on mailing yesterday.  Well my husband decides that he is going to call and low and behold he gets a call back in about 5 minutes.

I was really what the hell I have been calling for 2 weeks now and I am getting no where you make one call and puff they want to talk with us.  Well the Assistant is at a conference and his secretary needed the information regarding our concerns.  I called her yesterday and explained the situation.  She told me "Oh, he is going to call you husband back tomorrow afternoon."  Again REALLY.

I am a Stay At Home Mom so I can take care of these things.  First, my husband is working and doesn't need to  be bothered. Second, my husband is working and doesn't know everything that needs to be talked about. Not because he doesn't want to know, because I am the one who is talking with the school and going to the meetings.  My husband and I talk, although I spend more time with our daughter than he does and I know what she needs.

Now I am fuming because this Assistant is totally ignoring because I am a woman, a Stay At Home Mom, who must not know anything.  Well let me tell you, I know enough and I have now started writing many letters.  I do believe this is the last straw for me.  Now only am I fitting for my daughter who needs extra help and I fighting for my son who is top in his class and totally bored at school.

I think this Assistant should have thought twice before pissing off this mom.  I will not back down when it comes to my kids so watch out!

The Radio, the Doctor, and Absence Seizures!

Jordan had a great time Friday at the hospital. I must say right before we went on they played my recorded interview, it was the first time I had heard it. I was standing there listening to it with Jordan by my side and after a few minutes I started crying. Jordan looked at me and said “Don’t cry” as she wiped away my tears. All I could do was laugh at her, give her a hug and kiss her over and over again. Once I composed myself she said “Are you going to cry when we are on live” I told her I didn’t know although I would try my best.
She was very nervous but once she started talking it was very easy for her. She sounded great to me and again amazed me with her strength and courage. Of course when she started talking about the nurses Dina asked her if the nurses were a source of comfort. Next she asked her something like “What was the best part about being in the hospital” or something like that and Jordan said “Having my mom by my side every day.” And she thought I wasn’t going to cry while we were live. Really, at least I know when she is older she will understand how much I really did mean well.
After her interview we went and visited the PICU doctors. She was not really interested in that and wanted to leave so she just started walking away. One of the doctors said “It is nice to see she has attitude.” I wanted to ask him if he wanted to keep her. Instead I had her say hello and then we left. It was a great experience and she asked if she could participate again next year.
Friday night Jeff and I went out and I just want to say “Thanks to all of our wonderful friends. It was great to get with everyone and have a night of no worries. We had a blast and are looking forward to doing it again.” As I have learned life needs to go on, if she gets sick we will deal with it.
Saturday we went to Sarah’s for Cades birthday party. She was tired form being up early with her cousins, although she did great. When we were getting ready to leave she was giving me a hard time and just sitting on the couch. At first I thought she was being her usual self, although I picked her hand up and starting hitting herself with it and she didn’t respond. She fell over and was smiling at me when I moved her hair. While this may be nothing I really think it was an Absence seizure. What this means I am not really sure, if it was a seizure it only lasted about 2 seconds.


Last night after she went to bed, she was up at 9:40. I am not sure if she had a small seizure at this time either because I was not with her. I thought she was asleep when I left her at 8:30, although when Jeff got home she was awake. She ended up going back to bed and not getting up again last night.
Hopefully when we see the doctor tomorrow he will give us some answers. I believe we will get the results of her EEG and we will talk about the next step in all of this. I am hoping that if he thinks these little changes are something going on he will just start her on something.

In School Again

After having an ear infection on Friday and resting over the weekend Jordan is in school again.  I actually think everyone is going to be in school every day this week.  I am not sure the kids are going to know what to do with having a full week of school.

As for me I am going to turn the music up high, grab a drink, and dance around the house.  I think this is the first time since Thanksgiving that I have the house to myself.  No one asking me to make lunch, or wash their clothes.  No one looking for me to play a game with them or take them  out because they are bored.  I think I might go crazy having all this time on my hands.  Who am I kidding I am actually loving right now.

Don't get me wrong if my kids could stay home every day I would love that.  I would set up all these wonderful things to do and places to go.  In the winter though it is just to hard to have everyone in the house all day everyday.  The cabin fever gets to us.

We are getting more snow tomorrow, just a dusting so there should be school.  Thursday storm is heading out to sea, so No Snow for the first time in 4 weeks.

Yippee!

School..No School

Jordan has not been in school since the week before Thanksgiving.  She didn't start the school year on time because of everything that happened and then she only went one week.  Since she got sick on Thanksgiving and then the first and second weekends in December I wasn't really forcing her to go to school.

Well, after a month being with just me she is ready to pull her hair out. She wants to be with her friends doing 9 year old activities not running errands with her mom.  Plus there are only so many games of Go Fish and Rummy we can play in a day.

On Monday January 26th Jordan got up thinking that she could go to school.  I was not sure if the school would let her go although I figure I better let her try so she realizes it is the school and not me keeping her home. We get to the school and they tell her "You can't stay because we need this paper work filled out and a plan in place in case something happens."

I brought all the paper work to the doctor’s office hoping they would get it done as soon as possible. Today I got a call from the doctor to go over some things and it was actually great to talk with him. I was going to call him anyway because her behavior has changed and I wanted to know if we could lower a medication. After talking with him I figured they would send the paperwork right away and I called the school. Well, I didn’t hear from the school and it was 2:15 so I decided to call and they still hadn’t gotten the paperwork. I understand that these things take time, but I wanted to be like “come on this kid already hates me because she can’t go to school. She is probably the only kid on the planet that wants to go to school and she can’t.” After talking with the nurse I found out that there is another form that needs to be filled out, and the one the doctor sent was not really good enough for the school. At this point I will be lucky if Jordan starts school on Monday. I want you all to know, I UNDERSTAND WHY it has to be this way and I AM NOT UPSET with the SCHOOL or the DOCTORS. I just have a 9 year old child that yells and screams and me every day because she wants to go to school and cannot stand spending all her time with me.


She never made it to school Monday because she woke up at 4:30 with a fever, so we didn't send her.  Then we added 16" of snow on top of our 25" of snow and they canceled school Tuesday and Wednesday.  Thursday when she woke up she said "I can go to school? There is no delay and I can go on Friday too?"

"Yes you can go to school, there is no delay and yes you can go on Friday."

That was short lived.  She still wasn't feeling well, stayed home Friday and now she has ear infections.

I've decided she is never going to make it back to school, so she is never going to pass third grade,she will be emotionally devastated and be with me for the rest of my life. I did tell her she is probably the kid on the planet that wants to go to school and the only one that the school won't let in.

Snow Days and Science Experiments!

We had another snow day today and I really think that while I love snow days, the kids needs to go back to school.  Either that or I am going to have to start giving them school work to do while they are home.  Since we have been in the house for almost 4 days they are getting on each other's nerves.  I have no idea why sitting in the house for 4 days would be bad for you.

Today we did a science experiment and it was so much fun.  First Devon boiled some water and then threw it into the air.  The thought would be that the water would evaporate before it hits the ground, while Jordan through cold water into the air.  Her water would just come straight down and not evaporate at all, also her water would not freeze because it is not cold enough out.

Devon's water did evaporate as it was thrown into the air.  It is such a cool picture!

Jordan's went up and then came right back down.

It was so much fun to watch what would happen and see if we were right in our predictions.

We also made cookies, which was another whole adventure.

All and all another great snow day, wonder if there will be school tomorrow?