Monday, February 25, 2008

New pics

I just loaded a couple of pics of the boys.

Ryan's new accessory that he borrowed from Ella. He carried it around all day.

Ryan say cheese!

And Ethan fell asleep while playing X-box

I am so ready for warmer weather!

I made it back from Houston. It was very hard to come back though. It was 80 when I left. I love flip flop weather! We had a great time. We went to a tex-mex place for dinner and I had the best margarita (ok, I had 2), got pedicures on saturday and went out on the town that night. Here are some pics from my weekend.

Me and Lauren

Lauren, Michelle & Ryann

Stacey, Bre & Michelle

Stacey, the country rock star

Our weekend planner, Melissa. Poor girl was sick the whole time. You shoudl also check out her Kozypal Cart Covers. She does FABULOUS work!!

Stacey, Bre, Michelle & Melissa

And some random dude on the plane. I thought he looked like Chris Daughtry.

A couple more pics....
All of the girls


Me, Ryann & Kelly from NY

Friday, February 22, 2008

Houston, here I come!

Assuming my flight doesn't get cancelled because of the crappy weather, I am getting ready to leave for the airport for a much needed girls weekend in Houston. I can't wait to see everyone! I just know we are going to have the best time.

Have a great weekend everyone! Oh and if you are in this crappy Ohio weather, think of me! I am sure I will be enjoying Houston's 70 degree warm air, wearing my flip flops, and sipping on a margarita.

Tuesday, February 19, 2008

Another great therapy session

Ryan went to OT today and had a great session. He listened and when we redirected him, he was cooperative. He wore special ankle weights today to give him more of a workout and Ethan had to wear them as well. Ethan kept saying he was building his muscles. :) Today, in the swing, Ryan hung on all by himself and kept saying Wheeee! We moved into the food room using scooters and Ryan sat down and said bubbles! He knows that is his reward when he touches a new food so we got them out right away. He even blew some all by himself. He said lots of words too without being prompted. He played with applesauce & ate teddy grahams with a smidge or peanut butter oil on them. He gobbled them all down so this is something we will incorporate at home as well.

The best part was when Ryan's therapist even said she has taken note of all of the great strides Ryan has made in these past 4 months. Watching him today, you would never have guessed his first 3 sessions were crying fits. Transition has always been a very difficult part for Ryan and he transitions much easier then he used to. It is still hard for him but he recooperatess much faster.

It is so wonderful to see progress and knowing this is the place for him!

Monday, February 18, 2008

The day of 3 blood draws....

Today was one of the days I have been dreading. I had to take Ethan back to the hematologist so I could get trained on administering his medication. I was expecting him to have to be poked 3 times but they decided to do an IV instead. They put some numbing cream on him about 1/2 hour before and once we got back there, Ethan was all smiles. He watched them put the needle in and didn't even flinch. Numbing cream rocks! They took his blood and then gave him the medicine. It is a nasal spray and I have to admit that it did not smell very good so I can't imagine what it felt like in Ethan's nose. He did great though. We had to wait an hour so we went down to the cafeteria and had some lunch (pizza & ice cream!). He did complain a lot about the IV but I think it was more the tape they put on it. We went up again and had more blood drawn and an hour later had the last one done. They have a great waiting room complete with tv, a computer, toys & Gamecube so Ethan was in heaven. They did encourage us to get a medical alert bracelet or necklace, just in case, so we are looking into those now.

One other thing, I am so thankful to have healthy children. Hematology and oncology are in the same office. We saw a few kids, without any hair, wearing masks. I felt so awful for them but one thing I noticed was that they didn't seem to feel sorry for themselves. They were playing games and toys. They were all do adorable. One little boy, about 8 years old, was in the waiting room by himself. He had just had his blood drawn. The nurse came out with his results and asked where his dad was but apparently he was on the phone in the hallway. He asked the nurse about his platelet levels and his cbc. I couldn't believe how grown up he sounded and that he seemed to know what all of this terminolgy meant. I won't be surprised if he is a doctor one day.

Friday, February 15, 2008

Busy, busy day!

We have had a very busy day.

We started by taking Ethan to school. He didn't have school on Wednesday so he got to pass out all of his Valentine's today. He had to make special Valentine's for his girlfriends (yes I meant girlfriendS). He added 2 stamps and special sparkly stickers for the two Emmas & Sydney. I made sure to point that out to their moms. :)

Then, Ryan had his first speech therapy session. Ryan had a difficult time when we walked into the building and made it to the waiting room. He just seemed so unsure of everything and it resulted in a meltdown. His therapist came out within a few minutes and took us back to the room. She was wonderful with him and he recovered very quickly. He loved the shape sorter, putting the coins in the piggy bank and his all time favorite, bubbles. Even though it took him a little while to warm up, he did great and was trying to repeat a lot of what she said. He said pop, go, bubble and block.

After therapy, we went to get Ethan from school and came home to have more therapies through MRDD. His teacher started today and brought a speech therapist as well. He did wonderfully with both of them and by the end, was running and jumping them. They also gave us plenty of "homework" of things to work on in between visits. His teacher will come back again in 2 weeks but since we just started private speech therapy, we are no longer eligible for speech services through MRDD.

His teacher also mentioned summer programs that would be very beneficial for Ryan and they aren't quite as expensive as I thought they would be so we are hoping we can get Ryan into one of those. We are on the list to go to a center so we are hoping we don't have to wait too long.

Tonight, Greg and I are going out with some friends and Ethan's favorite babysitter, Kailey, is going to come and watch the boys. It's been a very long week so I think I deserve a beer....or 4!

Tuesday, February 12, 2008

Ryan's Autism eval part 2

Today was supposed to be a set of standardized tests with Ryan and the aide, Chaz. We walked him back and Ryan was fine being left in the room with him. Chaz is the same one that worked with him last week and Ryan just loved him. Greg and I went into a small room with a one way mirror so we could watch with the psychologist. Ryan was not very cooperative this time. Chaz would ask him to point to something in a book and Ryan wouldn't do it. When Ry and I look at books and I ask him to point to the dog or the ball or whatever, he won't do it either so I knew it wasn't because he just didn't want to work with him. I think he just doesn't know what to do with the question. Chaz was wonderful with him and tried for a good hour. They switched it up a couple of times and tried a different test with play testing instead of pointing things out in a book but at that point, they had lost him and he just wasn't interested anymore. They gave him a break in the OT room with balls and mats but again, he was past the point of getting him back so we called it quits. So we have to go back on March 10 to try again and hope they can score him on something. These tests are so we can go back in 6 months or so, test him again and see how far he has come.

While all of this was going on, the psychologist had a list of questions for us....another standardized test based on our thoughts. He didn't score the whole thing yet but thought Ryan is at least 10-12 months behind on speech, what he comprehends and what he says. That was hard to hear but we knew he was pretty far behind.

Today was also pretty frustrating for me. The psychologist and the pediatrician saw Ryan for about 45 minutes on Friday and based their diagnosis on that. I understand that they have to base it on what they see but I have tried to explain what Ryan is like in social settings with other kids and his lack of speech and the constant head banging but because they didn't see it, they cna't really make a diagnosis based on that. I understand that but it is very frustrating to think your child make have Autism and the doctors do not see it.

So for now, we are ok with all of this. They just see him with a langauge & developmental delay. I am still not 100% sure he is Autistic but I am not sure all of my concerns were heard. With or without the diagnosis, it isn't going to change anything though. We are still going forth with all of the therapies and with MRDD. Autism or not, he needs these therapies. This is the time where I wish there were some magical test to see if he is Autistic or not.

With all of that being said, we have noticed great strides in Ryan. He is making better eye contact with strangers and isn't always burying his face or covering his eyes when someone tries to talk to him. He has been having fewer meltdowns lately and doesn't seem to be constantly banging his head on things. I guess the occupational therapy he has been in has been helping more then we thought it was.

Friday, February 8, 2008

Update from Ryan's Autism Eval

Well, unfortunately, we don't really have any more answers then we did going into the appointment. Ryan did great throughout the whole appointment. In fact, he was an angel. He interacted with all of the doctors and therapists and played games. He threw the ball, showed them how he could run and played blocks. Now this is all wonderful but for those of you that see Ryan on a day to day basis, know that this isn't always the case with him. I am happy that he did so well but I wish he would have shown them just a bit more of his "true colors".

The doctors were wonderful. They were in there with us for well over an hour talking about Ryan's past history and where he is now and what we are doing to get him to where he needs to be developmentally. The whole time we were talking they were listening but also keeping a close eye on Ryan. One of the aides came and got Ryan and Greg and did some play therapy and testing in another room so they I could talk with the developmental pediatrician and psychologist. They said we are doing all of the right things: attending occupational therapy, speech therapy and home therapies through MRDD and trying to get into a center. There are a couple of options for the summer that we can try to get into.

After getting all of our thoughts, they met just to the two of them along with the aide and came to a conclusion. From what they saw today, they are leaning more towards Ryan not being on the Autism spectrum. In order to be diagnosed with Autism you must be delayed in 3 places: speech, socially and have some sort of repetitive behavior. Today, they only saw Ryan having a speech delay. He socialized wonderfully with all of them. Of course, this is good news, but we feel our questions are still not really answered. We go again on Tuesday for more testing like today and we should know for sure. Greg and I are going to sit down and talk some more and I am going to be sure we write down all of our questions to be sure we walk out of there feeling we really know what we can do to help Ryan.

Thursday, February 7, 2008

Friday is the day....

Ryan's first Autism evaluation is tomorrow. We have waited so long (not near as long as some families) but I also can't believe it is already here. I am very anxious and nervous to see how it will go. I just know I won't sleep tonight. We will go again next Tuesday to go over the results. I think Greg and I will be pretty shocked if it isn't, so we are prepared. We are also hoping to get some guidance on where to go next or to just continue with what we are already doing. I know this will not be a fun process for Ryan so I am dreading hearing him tantrum the whole time.

Please send good thoughts to Ryan!!

Monday, February 4, 2008

I knew I wasn't crazy.

So Ryan is feeling better and when he is feeling better, Mommy seems to have a constant headache. He has more meltdowns, is constantly throws things, bangs his head on the floor and just can't seem to be able to tell us what he needs or wants. When he had the high fevers, he was quite the mellow guy to be around. He was trying to talk to us and just all around communicated better with signing or pointing. He brought cars to Ethan so that he would come and play with him. He let me read him a entire book. Granted, it was a Little Einsteins book but we have never gotten through the whole thing before. He saw geese in the sky, pointed and said "GEESE". And even though the thermometer under his arm said he was very sick, he seemed happy....very, very happy.

A couple of nights ago, I mentioned to Greg how Ryan seemed to have a turned a corner and just seemed to be trying harder, instead of tantruming. Little did I know, that it was all because of the fever. I found this article and found it very interesting.

Friday, February 1, 2008

It's been a long week.

It's been a while so I have lots of updates:

Sickness--I am feeling tons better. My cough is finally starting to break up. Ryan, on the other hand, seems to be going in the wrong direction. I took him to the doctor on Wednesday for his 2 year check up. He still had a cough but for the most part was feeling better. He had 2 shots that day. Wednesday morning, he woke up with a fever but I just associated it with his shots. I gave him some Tylenol and he was up and playing and seemed to be feeling fine. By 1:30, his fever was 104. I know they say fevers in kids are different than in adults but they still scare me. I gave him some Mortrin and sent him to bed for his nap. When he woke up, his fever magically disappeared. But I knew we weren't out of the woods yet. Bedtime came around and it spiked again. 104.5 Great. More Motrin and bedtime. He woke up this morning and it is up again so we will be heading to the doctor this morning.

Ethan--We got the blood test results from the hematologist. He does have the blood clotting disorder called von Willebrand disease. We have to go back in a couple of weeks to go over medication and she will tell us more about it. I am dreading this day. Ethan has to have 3 blood draws in 3 hours. Since he is hypothyroid, he has to have his blood drawn several times a year so he knows what it is and that it hurts. Getting his blood drawn is like wrestling with a lion. Noone likes to get it done so I can't blame him. The nurse did say we could try an IV so that he won't have to be poked so much so we might try that but I have a feeling that won't be much better. He will have the blood drawn when we first get there, they will administer the meds, wait about 30 minutes, draw it again, wait an hour and then do the last draw. They have to make sure that his blood will react to the meds. The good news is that the medication is a nasal spray. Once we get this under control, we will go back to the ENT to have a blood vessel in his nose cauterized.

Ryan got into speech therapy. We were supposed to start today but with him being so sick, we are obviously not going. We will start 2/15. His teacher with MRDD will also start this day.

I think that is everything for now.

UPDATE: Got back from taking Ry to the doctor and she thinks he has another virus. Ears, throat & chest were all clear so we just have to wait it out....again.