Thursday, June 23, 2011

Moving on...(edited)

So the last post was about how Kylie was dropped from our Early Intervention program in Kansas. Since then, a good friend of ours from our church sent me some info about the Lee Ann Britain Infant Development Center.

Here is a bit of a description of the Lee Ann Britain Center and what they have to offer...courtesty of their website:

Dedicated to serving children with developmental disabilities from birth to six years of age, the Center provides a unique program that involves parents and siblings in the process of therapeutic treatment and education. Individualized programs are shaped for each child and family by a team of physical, occupational and speech therapists, early childhood special education teachers and music therapists. Through an emotionally supportive environment, the Britain Center staff helps parents, siblings, grandparents and friends adjust their expectations and way of life as they learn to raise and nurture a child with disabilities.

This is a place that our EI therapist had mentioned to us before, but never really went into much detail about, or gave us info on what they offer. It was more or less mentioned in passing. So after our friend told us about it, Kylie and I took a tour of the facility I felt that this would be the perfect place for her!

I had a mix of emotions after our visit: A bit sad that I had not known of all they provided sooner...I could only imagine how much more Kylie could have progressed had we known of this place. Then I was totally grateful that we now know of the Lee Ann Britain Center, and can only move forward from here.

Kylie attends the center once a week, on Fridays, where she has OT from 8:30 -9am and then she attends their toddler class from 9-11:30am. I am present for her OT, but leave while she is in her class.

I came early to pick her up on her first day, and sat in the last few minutes or so of her class. They do a music class as part of their daily schedule, and I was definitely in tears within the first couple minutes of seeing her. You see, they were passing around a little tub of animalss, as part of the song they were going to sing. She has always been very stressed when things like this happen, because all attention is on her to choose something...which is often too much for her. All I can say is that Kylie is in the best place for her therapy, because she was so ready for it to be her turn, and she excitedly selected her animal!

It gets even better :)

When she was called upon to say what she had...she told them "I got a chicken!" Yep...more tears for momma.

Kylie did get really anxious and didn't want to sit down, because she so very much wanted it to be her turn for the teacher to select her animal during the song. She kept shouting out chicken and was getting pretty hyper and all giggles...something that we will work on with her OT in trying to balance out that sensory system. For now, we enjoy that she is able to participate more and be excited about it, rather than stressed.

Oh yeah, and they said she ate the snack that was offered to her at snack time! She would never eat during snack time at her this is another HUGE step!

I had called Matt before I even left the parking lot to tell him that this is the place that Kylie needs to be right now, and how she made progress on the first day she was there. One more thing I love is that during her OT last week, her therapist said that she will help me plug things in throughout our day, to help Kylie and maybe find a good balance that works best for her. We will work together setting up a schedule of a typical day for us, and what we can do to help make the days go a bit smoother, and for Kylie to be less stressed and open up the window of when we can work with Kylie to do more things with her.

Kylie will miss class this week, because we are in Ohio for her follow-up apptmt with her neurologist at the Cleveland Clinic. We see him late Monday afternoon. I will be sure to post how things go there.

I totally forget to add this note in the beginning of the post, so I will put it here. Kylie's new Developmental and Behavioral doctor had sent a letter to us to forward on to ITSJC (our EI program here), stating that Kylie is in need of continued services and so on.

Even after that was sent to them...they met, and still said that the conclusion they reached is the same. They have provided all the services they can for Kylie, and she does not qualify....hence, the title and subject matter of this post.

Friday, June 10, 2011

Hide and Seek...time to hide

Okay, so this past week has been nothing but pure craziness, and I am ready to go into hiding....for good :)

Let me just recap with the last 24 hrs. After going out to eat at Applebee's of course, I take my ring off and get some gloves on to finish up my yard project. I had put 7 bags of mulch down earlier in the day, and just had 3 more to go, and my project would be complete. I was so eager to do so, that I forgot where I put my ring, and with my mind being crazy from the previous days, I could not even picture myself taking it off or where I may have possibly placed was lost.

I was worried that I may have been careless enough to put it in a place where Kylie could get it. So we talk to her about it, and she says that she had it....and takes us all over the her playroom, downstairs, outside...says it was in the garage, in the mulch, in the tree...after the tree comment, we figured she had no idea.

We searched the garage after we put her down, and search the yard with flashlights. Nothing. Paranoid, I sleep in Kylie's playroom, just in case someone were to come by and find it...crazy I know, but this is me when I am freaking out about something.

I have crazy, scary dreams and don't sleep well, wake up for good at 6am and search the garage and yard all over again. Nothing.

Once Kylie is up, I get her dressed and take her to a new place for OT and for a toddler class (more in an upcoming post). I share my ring dilemma, and they say that I can leave after her OT is done, while she is in her toddler class.

Kylie does amazing as I leave, and I got rent a metal detector...yep, a metal detector. Of course it is raining now, so I search the yard with the metal detector in the rain..neighbors must think I am crazy..oh well. Nothing.

I come in the house to scan the dog with the metal never know, right? As I come in the house I take my shoes off. I see a cup on the end table...a large plastic cup with a lid and a tall straw. I immediately think that I had placed my ring over the straw, and I look and see it there! The cup was on Matt's workbench in the garage, and while we were searching everywhere, he cleaned off his workbench and put the cup in the house.

Lesson learned: Never do yard work again :) And, perhaps not worry about my ring getting dirty, so not taking it off again.

So, onto the next and craziest part of all.

Matt gets a call today, that the server that waited on him over the weekend was being treated for bacterial meningitis. This is something that would definitely alarming to people, but even more so, to someone that has a child whose immune system was once severely compromised from a medication, as a result of a incredibly rare form of epilepsy.

So my ring fiasco, was nothing compared to Matt on the other end of the phone today, fearing that his exposure to this person could affect Kylie...our sweet girl that has been through more than we could have ever imagined.

The smart guy that he is had already called his doctor and Kylie's pediatrician to see what they had to say about it. They did say that symptoms should have presented them self by this point, but to keep an eye on her. They also mentioned that it would be pretty rare for Matt to have carried something like that back to us....but with IS being so rare, we can't take anything like this lightly.

Matt got a call back about 3o minutes after calling me, saying that the health department ruled out bacterial meningittis. So enough time for us to completely freak out, to then say it wasn't that, and that the diagnosis was still unknown.

Later in the evening, Matt saw that Kylie's pediatrician got back with us and left a message saying that if Matt was feeling okay, then there was no need to worry about Kylie. It all just makes me sick to know that something very scary could have happened again. I can't go through anything else right now, none of us can. I just feel that I could really break, so I will be guarding myself a lot for a while.

The hard thing is that it makes me feel like okay, maybe we need to revisit the idea of getting Kylie more of her immunizations. Then I recall the little guy whose blog I found, and his family was preparing his one year seizure free celebration. They were just one week away from the big celebration when he got one a shot at the doctor's office, and within hours he began seizing and still has seizures to this very day.

This is the very shot that we were thinking of allowing Kylie to get, but we can no longer go through with it.

I do not know that I can live with myself knowing that we said yes to the shots, and this very thing happens to Kylie. Oh, they say it is so is Infantile Spasms. I also do not know what I would do if she gets something that could have been prevented by a shot.

I know this is the obvious to so many, but not so much to some that feel like they need to get their point across...but anyhow, no need for lectures on shots or anything else...right now we need lots of support and love, because we are feeling pretty shaky right now.

So yeah, this is all in the last 24 hrs...actually it was more like 20 hrs, but who's counting. Thanks for following and staying with us :)


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