Cinci Appts

This is why I love Cincinnati. They do all of the work for you when it comes to scheduling with the other team specialists. I have already gotten the calls to schedule Simon's sleep study and Sydnee's Rehab appt. No searching on my part needs to be done. I just look at my calendar. We're still waiting on a few more.

The Results are In!

Drumroll please..... I got up a little earlier than usual. I needed to get the kids to school early enough to get gas, and head to Cinci again. Mike and I went up to meet with Dr. Ryan for the results of both kids testing they had in March. Some of the things were things we kind of already knew, but there was many new things too. Some of them surprised me. I think it's because I have focused on the obvious things we had been dealing with. Now I am in information overload. I am extremely tired and I think it's just from driving for 2 1/2 hours, listening to a major amount of detailed information for 2 1/2 hours and driving for another 2 1/2 hours back home, picking up the kids from school, going to Mom's for about an hour, taking Simon to scouts and getting home and rushed to bed at 8:43pm. Then started over today. I think I am trying to catch up on sleep from last week too.

End results.....Simon was confirmed to have FASD. He has the physical characteristics that I never saw. I guess you don't see the forest for the trees. But his upper lip, shape of the philtrum, his ears and his hands. His palms are small compared to his fingers. He will also have the depth of the Aspergers defined by the geneticists as well. His IQ is all over the chart because of high areas and very low areas. So that part wasn't surprising. The main thing is they want him back in speech therapy, in behavioral therapy, cognitive therapy, and we'll have to see if the school is willing to offer a little different method of learning to read. He is struggling pretty hard in that area. But she asked if he memorizes quotes, etc. I looked at her and said "how about whole movies". She said his ROTE memory is huge. That is going to be a big advantage for him. That area for IQ was 122. That is extremely high. But when you look at the whole picture you would never know he could do that. They don't recommend any kind of team or contact sports. Competeing with others doesn't work. He'll need to compete against himself. They did recommend karate. I have heard this several times and I guess it's time to give in. At least football is out. It just so happens that this doctor is the brain injury specialist for the Cinci Bengals. So I guess she knows what she's talking about. LOL. She got through to Mike that these sports are not good for a child who is already lacking in corpus callosum. We are trying to help it along, not damage what he has. She is really wanting to remove some meds after getting all of the doctors lined up. Sounds good to me.

We have noticed just this year that Simon seems to have a huge pain tolerance. It takes a hard hit for him to really complain. And then it's just that, a complaint, not tears and all. well come to find out that kids with these issues seem to have this in common. They told us it also is why he doesn't understand why if he hits someone or throws something at someone that it will hurt them. Because he doesn't know what pain feels like himself. Makes sense when they described it all in detail.

He doesn't recognize others space. He is an in your face kind of kid and now we know why. When he wants to speak, he does it regardless of when is a good time.

Sydnee was confirmed having the OCD. She has bilateral hand tremors (which she has started seeing a neurologist for). Her IQ is all over the place too, but in the lower range. So we have a lot of work to do there. She is also having reading difficulties. She has FASD. This was a huge surprise to me. But I should have seen it. When I look back at pictures, there is no doubt. There were many signs, but we always just thought she was small and would grow out of it. Again, you can't see the forest for the trees. She struggles in many areas. They would like to see her come off her meds too. Again, that sounds good to me. They also told us she will be considered PDD like Simon. That made sense, but just hadn't been far enough in testing yet until now.

End result is Sydnee will be evaluated by Dr. Michaud for the tremors.

Both kids will also see more doctors for many things. They plan to start the evals now and then start intensive therapy as soon as school is out. They want to get as much done this summer as possible. They will combine as much as they can also to help with the trips back and forth. And it will help keep things in one facility. Right now we see the providers in many locations. I think most will be downtown Cinci. That'll be great because it's the closest.

They want me to go ahead and look into the Jeff Co IEP program to see if that's an option. From what I hear from others I know, that can take until fall to get lined up. But with us living in Bullitt, and going to private school in Jeff, we don't know what we'll get. Mike does pay Jeff Co taxes, so I hope that helps.

I have been given some good information to check into about the U of L Autism Center and Feat of Louisville. Their websites have tons of information. Now I just have to absorb it all and make some lifestyle changes to be able to incorporate all we learn this summer.

It's funny because I was looking for a notebook today to keep my notes in from all of this. I had gone to Staples and the first one I walked up to said "Trust in the Lord with all your heart". Wow! How fitting. I will need to do this to make it all work and come together. This will all require somewhat of a life change for us. There are so many things you take for granted that just don't exist with our kids.

Cincinnati Appointments

We got to Cincinnati on Sunday evening. We have a total of 3 appointments. Since it was Spring Break I was trying to combine some to save school time missed later.

The Childrens Hospital always sets us up in the hotels. They have contracts with them and we get a much lower rate than normal. Not to mention that I don't have to sit on the internet trying to figure out which hotel is closer to which facility we are going to. Depending on the doctor we are seeing as to where their office will be. There are many campuses.

So Sunday night we are set up for "Six Acres" Bed and Breakfast. The pictures on the internet looked nice. But we stayed in the "annex". Mainly because we had the kids with us probably. Well, we got there and the kids went nuts. They were running all over the place checking every nook and cranny there was. And believe me there were tons of them. This house was 3 stories tall plus a basement (or cellar). It was very old and had all of the neat things that make these old houses look so wonderful. There was a large bedroom off the foyer that was probably the old dining room. Then there was an old sunroom where they had one twin bed in and we added a rollaway. The kids slept there. The other two upper floors were full of bedrooms too. But we stayed downstairs. The funny thing was the bathroom. When you sat down you could feel the floor was leaning to the right. Sure enough the floor had sunk. It felt very solid, but you had to hold on to keep from sliding to the right.

The Annex

The kids thought they were in a mansion. They absolutely loved it and couldn't wait to tell everyone where they stayed.

My bedroom

Below is the dining area looking into the "sunroom" that was where the kids slept. I think they liked it best because they felt like they were on their own. The livingroom was quite large so it seemed like they were in another house.

They had a nice breakfast for us this morning. The kids did a wondeful using their etiquette. Napkins properly in their lap, manners while eating, not reaching, saying please and thank you, etc. They were so cute.

Tonight we are at Fairfield Inn, Marriot. Heated pool for the kids. So that was fun. They were tired by nighttime, but Sydnee absolutely was determined she wasn't going to sleep. I know it was nearly 11:00 before she even attempted to close her eyes. But she finally did.

We hit a few local quilt shops too. But you'll have to see my other blog for that one. We rated each store on content and personality. You can go to my other blog to see that information.

On the way home, we stopped at IKEA. Oh my gosh! This place is too cool. I had no idea. I've seen commercials, ads, etc. We got there about 4:00 and didn't leave until 8:30. The kids loved the idea that they had a sitting service for kids. They would let you drop them there with toys, games, crafts, etc for one hour. They loved it. My only disappointment was that it's a German store, but many things were made in China. We have been trying very hard not to buy things not made in USA. And yes, that is extremely hard to do. But I also find that I don't buy as much junk that I really don't need. If you ever get the chance to go to IKEA, you need to go. The prices were good too!

On the way back home on Tuesday, I had the opportunity to find and take a picture of the two places I lived while in Northern KY after I was born. I was born in Covington at St. Elizabeths, but lived in Erlanger. We lived on the top floor of this building.

This is the apartment building we moved to for more space. I guess after I was born, we needed the space. We lived there until we moved to Fairdale. It was close to a year I think. This was on St Joseph's Avenue. The funny thing is that one day I was talking to a friend of mine. You know how you get on the conversation of "when were you born"? I just happen to ask her where she was born and she told me it was a small town that no one had ever heard of. I asked her to tell me anyway, because you never know. So she went on to tell me it was Covington. The next thing you know we find she was born in the same hospital, same town and we all had lived in the same apartment building at one point. She was born a few years ahead of me. But her Mom described it to Mom and I several years ago and sure enough it was right across the hall from where we lived. There goes that small world thing.

After getting back home this week, there was the one night with storms. For some reason Sydnee was getting the idea of what bad weather was like. Usually when we get these storms, Mike is at work. So it's just the kids and I. Sometimes we'll go to Mom's if they are going to be in the middle of the night because we don't have a basement and that way I can put the kids to sleep in the basement and we don't have to wake them up to get them in a car, etc. Well this time she decided that she wanted to save her animals and dolls. So she loaded them up in her playpen so they would be close to her if we went downstairs. We have a garage that sits 3 feet lower than the rest of the house. So it's there if we are stuck. But at this point, we won't be able to get in there because she has stuffed it with her toy.

That night we went on over to Mom's house (and the storm wound up being a bust). But the kids had been wanting me to make their birthday invitations. So Sydnee wore the dress that her cousin Kim and Aunt Beverly gave her. She looked to cute. Simon kept pretending that he was her prince charming.