Saturday, May 28, 2011

The Funniest Cough

Jerry Seinfeld watch out.....looks like Mer Bear would pay top dollar to simply hear somebody cough on stage!! Sorry about the Mommy talk - it seems I have no control over this.

Saturday, May 21, 2011

We found our school!

Meredith will be attending a classroom that is part of the local regional Bi-Co program at the Jordan-Jackson School in Mansfield. Or as we are having fun calling it - the Michael Jordan Michael Jackson School : ) We are so excited! The thing that stood out most to us about this school is the sincere warmth of the staff. It's was really a beautiful thing to see. We loved everybody we met there, most of all her teacher, Sara. We just clicked with the staff. We parked our car in the lot and started walking up to the entrance when a side door opened and a nice lady leaned out and said "you must be the Lewis family, I'm Sara, the Bi-Co teacher!" Before we even walked in the door, things were feeling good. It just felt like a warm comfy shoe being there. The space is HUGE with plenty of room for lots of equipment and group activities. It's clean, organized and feels established - it's been there since 1992. We met 4 of the other students, 3 girls and a boy, ages 5-7. Come fall, there will be 6 total students including Meredith. One girl ran up to Greg and gave him a hug. The children were really happy, lots of smiles and laughs. They were having circle time (with switches and a huge projected "movie"on a wall) when we showed up. Lots of clapping, laughing, singing - all things Meredith will adore. Meredith was full of smiles just watching the other kids have circle time. The staff was super attentive to Meredith, interacted with her a lot and showered her with lots of love and smiles, which us parents eat right up. It was clear they had read through all her reports and seemed quite familiar with what she's been up to. It's a 12-month program with a week off in August - so Meredith will be a busy lady! But since Greg and I work full time, this actually works quite well. She'll go to school 5 days a week and will be picked up at the house in a van or bus around 8:15 and she'll be dropped off at home around 3:15. There is a nurse in the classroom at all times and there are 3 aides. They have a big bathroom off the classroom where they work on potty training with all the kids - even if its just sitting on the potty for a few minutes each day to get used to it. They have nap time after lunch where kids can sleep, stretch out or just rest. We knew pretty much right away on our tour that this place was the winner, so we just came out and told them we wanted to send her here. They were thrilled and a couple of phone calls later, we are almost buttoned up. I feel really good about this transition to school mostly because I really think meredith is ready for it. She's ready for the interaction, the curriculum and all the learning. She's going to do great there! She should start right around her third birthday - June 13th : )

Friday, May 13, 2011

Saw our first school

Monday morning, we toured the first of the 2 collaborative programs we have to choose from for Meredith. This classroom is in Medfield at the Wheelock School. There are 3 other students in the class, Meredith would be the fourth. The teacher seemed great, we liked her a lot. She is very eager and enthusiatsic about the kids and the program. She was warm and friendly. There is a nurse in the classroom all day which is awesome, since all the other kids in the class have seizure disorders. This school would be about a 20-25 minute ride on the bus for Meredith and she would be picked up at 8am - which is good because this leaves me enough time to get to work by 9 without needing a morning sitter! I was a little surprised how much older the other kids were. There were 2 boys, both age 8 and one girl who is 6. They reminded us that since we are really focusing on developmental level here, the ages of the kids is slightly less important. Our coordinator keeps using the term "low incidence". Really driving home the fact that there just aren't many kids around with these kinds of needs. Makes sense, just wasn't what we expected. Since these classes can move from town to town depending on where the low incidence kids are, we liked that it really felt like a classroom - it didn't feel transient or temporary. We got to meet one of the boys on our visit. His name was CJ and he was really sweet. It's definitely a very low functioning class and I found myself looking around the classroom thinking - I can't believe this is where we "fit". It's crazy. Sometimes it's still a lot to wrap my head around. As much as I feel at peace with everything now, there are these moments that hit me like a truck where I still can't believe this is my life. Even though I love it and even though Meredith fills my life with more joy than I could have ever imagined. I still can't believe this. I wonder if that will ever go away. Overall, we liked the school and think Meredith would do just fine there. Since we have a choice, we are keeping our options open and are excited to see the other program to have something to compare it to. There seems to be mass confusion around where this other program actually is. It's moving and our coordinator isn't sure where or whats going on. So we'll go tour this other mystery class in its mystery location as soon as we can!

Meredith has been doing awesome. Happy, feeling good and full of smiles. She easily tolerates an hour and a half in her stander at a time now. We try to get her in there a couple times a day so she's getting 2-3 hours in there. You can really see the progress she's making with her vision and ability to focus on an object. You can actually see the coordination starting to develop while she watches her own hands while playing with toys - especially in the stander. We haven't seen her roll since November, hopefully that comes back again. And she still won't push up on her arms while on her belly. We work on that a lot since a little arm strength would go a long way for her! For example, she doesn't use her arms at all to stabilize herself when she's sitting, so she falls right over. Arms serve one purpose for Meredith - entertainment - because they have hands on the end of them! We've seen huge progress since we got her Dilantin levels straightened out, it's obvious she's feeling much better. We are loving all the watching she does now. Watches Greg and I everywhere we walk and follows us with her eyes or watches us while driving in the car. I love turning around in the car and seeing her looking right at us. Her favorite thing to watch is still her own hands, but now she looks at us and her environment so much more. Greg jokes that if he dressed up as the Hamburger Helper guy (giant hand) she'd be a lot more interested in us : ) She's still not sitting on her own or weight bearing on her feet without the stander but is definitely getting stronger. We saw a Physiatrist a couple weeks ago who told us to never give up hope - he has some kids he sees who didn't walk until age 8. It's still definitely a possibility for her, even if she always needs assistance with a gait trainer or walker. It could still happen!! We are not as hung up on this as we once were, but I'd be lying if I said I didn't REALLY want that one thing for her. We do. And hopefully someday it will happen for her : )

Monday, May 9, 2011

Sneak Peek of our Pix!

Our awesome photographer Melissa posted a few samples from our session to her blog so we could have a peek. Here they are, we can't wait to see the rest! Here's a link to Melissa's website in case you are local and love her work like we do : ) If you click on "enter blog", thats where she posted her Meredith pix.

Friday, May 6, 2011

Inspiration Through Art

A few months back, Meredith's PT Arlene told us about the Inspiration Through Art project. It's a great non-profit organization where local Photographers and Artists donate their services to our nation's little hero's free of charge. Meredith applied and was selected - woohoo! Tomorrow is her big day, she will be having her very own little photoshoot at our house! We are excited to meet our Photographer, Melissa, who will be coming over for the big event at 10am. Last night we ran out to get Meredith a proper haircut since I've been trimming her bangs since her last "real" haircut - and we all know how well home haircuts turn out : ) I will post some pictures from her shoot here once we get them so you can all see. Crossing my fingers for a happy, smiley, seizure-free morning so all goes smoothly! And I will try not to back-seat Art Direct, but no promises...

Sunday, May 1, 2011

Our big IEP Meeting

Friday morning Greg and I brought Meredith to ECDC where we had our big IEP meeting. We were nervous because we were about to find out whether or not the Franklin special needs preschool felt they could accommodate Meredith. Also Meredith had 3 seizures early in the morning and needed Diastat. She has molars coming in and has been quite sleep deprived, so maybe that triggered them. Since Meredith had had Diastat, she slept soundly through our whole meeting. There were 13 people there including Greg and I. We sat around a big round table and discussed the results of Meredith's assessment. Then we put together some goals for her for the coming year - things like assisted feeding with a spoon and using technology to help Meredith communicate and make choices. After we were all in agreement on what areas should be worked on while Meredith is in school, we had the talk. They felt Meredith's needs would be best met at a bi-county collaborative program, not at ECDC. After talking through the reasons why, it became very clear that this would be a better fit for her. Franklin is part of 2 collaborative programs so we'll have our choice of 2 classes. One is in Foxboro and has 5 kids and the other is in Medfield and has 2 kids. One of the programs is actually moving to another town, but we don't know where yet. They have things like standers, seating devices, and most importantly - other children like Meredith! We are very excited to meet some other kids with similar needs and their parents. Now we wait for a call from the out-of-district coordinator who will arrange for us to tour both schools and then we'll make our choice. Meredith was approved for a full day program, 5 days a week, which is great. The town will provide transportation to and from the school and she'll have an aide on the bus with her in case she has a seizure. We are very excited and feel great about the bi-co programs. We are also relieved to have the meeting behind us and to have an idea what will be happening in the coming months. So Friday was a really good day overall even though we were battling seizures. They continued into Friday night and Saturday and Meredith needed Diastat 3 times. The last seizure she had was Saturday at 3am and she's been clear since then. Which was great because we wanted to go to cousin Ellie's 3rd birthday party yesterday and since Mer was in good shape by then, we could!!! We had a lot of fun celebrating Ellie's big day and seeing everybody. I got to put a tony-pail in Ellie's hair and play golf and football with Daniel. We are enjoying the warm weather so much and spending as much time outside as we can. Sunshine feels so good. I'm still savoring every second after that loooong winter : )