Oh gosh, what has happened since I wrote last. Let’s see, we’ve got the girls over this weekend, we had a neurology test done on Selena, she’s back on her meds, we’ve had some pretty typical Selena behaviors pop back up and life goes on some more!
First, let me tell you about her EEG she had done. Selena’s behavioral pediatrician wanted us to get a neuro consult done, so naturally we followed through with doctor’s orders. We tried to prepare Selena for the test since Daddy filled me in that the EEG is where they put nodes on your scalp and they gather brain activity. So we tell Selena they are going to put stickers on her head, that it won’t hurt at all and that we’ll be right there with her through the whole thing. She was a bit nervous about it, but she was telling people that she was having a test on her brain done. She asked why she had to have the test done and I explained to her that they were going to show us just how smart she was and how perfect her brain was. I wasn’t sure what they were going to be looking for or what to expect so I didn’t want to scare her and tell her the ‘truth’. She would then tell me that they were going to tell us how smart she was. Good enough for me!! They said we had to get her as sleep deprived as we could and boy did we try! Now that she’s on the right medication schedule, she has been putting herself to bed around 8:45-9:00 every night. So, when it became about 9:00 she started with the, “It’s time to get ready for bed” routine. I told her she needed to stay up and about every 10 minutes she would remind us that her eyes were very tired and that she needed to go on the potty and get ready for bed. It was rather cute although she was getting more and more upset as the time went by. Me and Daddy each had a long day and we were pretty tired ourselves so it was a stretch for us to stay up ‘late’ too and I was curious on how in the world we were going to pull that off! Around 10 she was rather agitated and was to the point of arguing with us about how she needed to go to bed and how her eyes were very, very, very, very, very sleepy and that she just had to go to bed. Needless to say, she fell asleep on the couch around 11 and we put her to bed. Our destination was St. Pete and we had to be there at 8 am, so we had an early wake up call. She was not thrilled about that either, but we pressed on, made it up there and had the test. We went into the testing room which was pretty small and straight to the point. The woman who was doing the EEG was awesome with kids (well she should be, she works in a pediatric neurology office) and explained to Selena what was going to happen. Selena was naturally nervous and Daddy was right there to take her hand, per her request. I would like to note that I was totally unprepared for all the paper work, my purse was a disaster (which I had to sift through) and I was very thankful that Daddy was there for Selena. They gave her ‘rainbow’ hair with all the electrodes sticking out and wrapped her head up in gauze. She did everything asked of her, although she didn’t like to answer questions like, “Can you name something that is red?” or “What is your favorite color?”, she did pretty good and the result of the tests shows that she doesn’t have epilepsy or seizures. Her doctor wanted to rule that possibility out because children who have autism can also suffer from epilepsy and also that their behaviors could be linked to seizures. That’s great news! We were also complimented on being great parents, that’s always nice.
After the test, we headed back to Sarasota to pick up her medication and they counted wrong! They were 30 pills short! Good thing I counted before we left or I would have been extremely mad! I went back in and they said that it would be filled within the week, that is so frustrating! I could only make it there because it was my day off during the week, I don’t get out of work early enough to make it 30 minutes north to her pharmacy. So now I have to get up there Monday (they’re open till 8pm) and be home an hour late. Ugh. Oh and her pediatrician had said that her medication wasn’t covered by medicaid, well…it is and she just didn’t want to fill out the form? Either way, I got a copy of it and when we go to her next appointment, I’ll be sure to bring it and have her fill it out so we don’t have to jump through these hoops again!
We picked Emma and Hope up on Tuesday instead of Wednesday, and I had to work late so that was pretty stinky. I always love it when they’re with us and when I get home, they rush out to see me and it always makes me smile! Daddy had dinner ready, dinosaur chicken nuggets, mac & cheese and hot dogs for Selena. They always dress up in these really cool costumes and outfits, they definitely know how to play pretend! Dinner is always fun when we have the dino-nuggets, because they like to make rawrs and bite their ranch covered heads off. Just 3 more days until they get to spend the weekend with us! We’re always so excited when it’s our weekends with them, Daddy and myself talk for days about all the fun things we can do! This weekend will be pretty busy though, seeing how we have horses, my Girl Scout leader meeting (I’ll get to that), swimming with Mahja, possibly some cookie baking and who knows what else!
Nothing else really happened before the girls arrived, just work and sleep. Selena has been a bit more defiant but with her getting back on 3 times a day, she’s starting to mellow back out. Mornings have been really bad lately and she has been fighting me to do everything, throwing herself on the ground when requesting to do simple tasks like brushing her teeth. Something is happening to her lately and I’m not sure if it’s something at school, at home or this time of year. We are going to start seeing her do more things because holidays are about to start back up. I only hope we can keep her from chewing her fingers again, oi vey. School is going alright, she has settled in and is now starting her meltdowns at school, but they seem to be further apart (or at least they aren’t writing everything down). She has also not really been eating at all, which is odd because one of the side affects of her medication is increased appetite, and that really hasn’t been happening. I hope that her experience in after care doesn’t get worse since she’s starting to act out in school. Side note, Emma is rocking at school and Hope was nervous for nothing, she’s loving kindergarten.
Daddy picked up all the girls on Friday and the weekend has officially begun! We had salisbury steaks, potatoes, corn and of course dessert, which was fudge bars (the big ones!). Bath time, movie time and they were out. That’s good, because Saturday is going to be a busy day. Early morning wake ups by the girls and we’re off to a start before 7:30. Mornings movies and play time then it’s time for the library for the Girl Scout leader meeting. It was the first time Emma and Hope got to play in ‘our’ library, they had a blast! There are more toys there than at the library they are used to going to. I went into the meeting thinking that I was going to be a co-leader for Selena’s Daisy troop and I walked out of there being the leader for the troop. I am so stoked and nervous at the same time! That means that I will have more to post about! This is going to be a lot of fun and Daddy has said that he wants to help with the troop too!! So far we are up to 12 Daisy scouts interested in being in our troop. Holy cow! When I was greeted by the rest of the family, they all had their special movies they picked out and were very excited to get to watch them later. We were off to horses!
At horses they did really well waiting patiently for Selena to get done, visiting all the other horses and waving to Selena. InStride is having their annual Giddy-Up fundraiser and we’ve begun taking pledges on Selena’s behalf. They have an online donation page set up which will go directly under Selena’s name. If you would like to give a monetary donation or would just like to go check out our pledge page (has a cute pic of her and her horse) please follow this link. http://instride.dojiggy.com/ng/index.cfm/aa1a98e/regPages/pledge/SELENA/ I don’t like asking my friends and family for money because I know how hard it is right now financially and every penny gained is a penny earned but if you are able, willing and wanting to donate to a program, click that link. Hehe. Don’t worry, we still love you, no matter what you do!
It’s now Saturday night, Emma has been sitting here proofreading almost my whole post, we have a busy day tomorrow and I’m ready to spend some time with Daddy before we pass out ourselves.
*For the record, 8 year olds can try really hard to proofread but they don’t know all the rules of English or grammar yet, so it makes it a bit difficult. Although her input is greatly appreciated 🙂 I have edited the post now that she’s passed out.