Cathing up once again!

Hello faithful readers,

Sorry it's been a bit of time since I've posted. Seems like such a long time ago now since that last update. A lot has happened that has just kept me from sharing, but today feels like a great day to catch up.

Last week was sad for me as I found out that my great Uncle Al passed away. He was so special to me (and everyone in his life) and he will be so missed. I have so many wonderful memories of Uncle Al, including but not limited to his talking banana trick and magic that he did for us kids. Not sure if Aunt Gladys reads my blog, but I want her to know I love her, and miss her and really hope to see her when we go up North this summer.

Also my love goes out to my Uncle Scott, Aunt Bonnie and cousin Meagan (and family) as they go through a really hard time right now as Uncle Scott battles cancer here in Orlando. I love you all and am here for you with whatever you need.

On the Aiden front -- Aiden is doing REALLY well with his speech therapy. Each week he improves on things that according to the therapist usually takes children months if not years to acheive. His situation just continues to be incredibly strange. But, he's improving, so HEY we'll take it!

Aiden started his new school at UCP this past Monday. He's adjusting really well to his new environment. The teachers are wonderful and Will and I really feel he's in the wonderfully safe and theraputic environment in which he needs right now. He's definitely a bit "shy" speech wise in school, but that is to be expected on week 1. The speech therapist at the school seems great, and we are excited that both the school and private therapists are going to work together (via email/phone) to be sure they are on the same page regarding Aiden. He's such a unique case so I think they are probably thrilled to be able to discuss and strategize together! A new and exciting development came about this week that we weren't expecting. Aiden had originally qualified for "Part time" school which was 1/2 day, 4 days a week. So we thought he was going to go just Mon-Thur 8:30am - 11:30am. Well.. it seems once you are IN the program, they can adjust things a bit. We were offered FULL TIME SCHOOL for FREE for Aiden. WOW!!!!!! Now, I'm not quite ready to let Aiden go full time, especially since he's still getting private speech therapy. So we settled on a schedule that works great for all of us. Mon/Wed until 11:30pm (and then go to private speech with me). Tues/Thurs until 2:30pm, and Friday is OFF to spend with me! We are really excited about this schedule and the fact that this is an option. We are so impressed by the resources being provided to us for our little guy!

On the medical side -- we have an appt. with the pediatric neurologist on March 31st. We'll go over Aiden's latest bloodwork, and discuss what to do next (or what NOT to do). All signs really point to Aiden having a mini-stroke that night. We have been doing a bit more reading and thinking, and it's quite possible that if it was a stroke, that by the time we went in for the MRI (which was about 3 weeks after it happened) it wasn't traceable. Again, just another theory.. but who knows? All we know is Aiden is healing every day, and we are SOOOOOOO thankful for that. I honestly didn't know if I would ever have my son back to the way he was. So, this is just a miracle to me. Please keep praying that whatever it was that happened doesn't happen again, or pray that we find out what it was so we can prevent it from happening again. Thank you.

Since Aiden is doing better, and we still want to keep things as normal for the kiddos as possible, we have been doing some fun things. We took the kids to the Orlando Repatory Theatre to see the play "If you give a pig a party". They loved it. In fact, Aiden was so excited that he couldn't resist labeling everything out loud during the play. "oh my, there's a bicycle!", "oh my they are eating ice cream", etc etc. It was darn cute! Here's a couple pics from that day:


































Last weekend, Will was working at a wedding, so we went over to my sister's place to hang out. We all went to a park and then back for some swimming...





































We were invited to a fun birthday party of one of my Kindermusik families last weekend, and I have some fun shots from that. Thought I would share!







































Also some park pictures at Lake Eola.. we took some on my phone, which I haven't quite figured out how to get to my computer, but also a couple taken with the camera for the batteries ran out...

































I had the chance to get out and see my girlfriends last night.. which was VERY needed. We took a pic (of course).

















Looking forward to the coming weekend and seeing Molly and Alan (will's parents), along with friends. I'm also in crunch time for releasing my Kindermusik summer schedule. I have many people ready to sign up for summer already! wowie.

Okay, now I'm off to spend time with Aiden, as it's our Friday "off". Will suggested taking him to Chuck E Cheese.. hmm.. shall I brave it? heehee..

Have a perfect day everone!
Love,
Holly

An information filled day...

Hi everyone,

If you are still keeping up with our saga, thanks! :) We are back home from the 24 hour long EEG test for Aiden. As we predicted and expected, that test came back normal/inconclusive. So.. we still haven't yet found any medical explanation for what happened to our little guy. We will be going back to speak with the neurologist again to see where we go from here, and what further testing Aiden may have to undergo.

In the meantime, while searching for a medical explanation, we are still trying to figure out where and what to do about Aiden's options for school and speech therapy. So as I mentioned in my previous post, we were offered a spot for Aiden in the 4 year old class at the UCP Charter School near UCF. We went today to speak with them, take a tour and find out some more information.

I'm happy and RELIEVED to report that this is most definitely the perfect match for Aiden!!!!!!!!!!!

The school is a charter school, so because Aiden has qualified for special school and therapy, he can go there for free compliments of Orange County Public Schools. This school has a waiting list of 180+, and there is ONE spot available, but because we have the blessings from Orange County, we get first dibs!!! How crazy is that?

This school believes in making all their classes "inclusive". This means that 1/3 to 1/2 of the kids in Aiden's class do NOT have any special needs of any kind. Their parents put them there because they believe in teaching their children about compassion and caring for all kinds of people *goosebumps anyone?*. They state in their literature that a benefit to a child without dissabilities attending this school is that inclusion provides opportunities for children to learn that being different is acceptable and not something to be afraid of or shamed by. Wow. Some of the kids are children of the staff at UCP. Some are children of professors at UCF. Some children just have parents that get the concept of an inclusive school, and know what a great school it is. Even if Aiden gets better, and doesn't need help anymore, this is something that is truly powerful, and something I WANT Aiden to learn about. The class has 15 children, and 3 teachers. So.. on a full day with perfect attendance.. the ratio is 5:1, which I think is pretty phenominal.

The teachers and therapists work together so that Aiden's "care plan goals" will be worked on by a team, and will be well integrated into his day. As I mentioned in previous posts, Aiden qualified for free GROUP speech therapy 2x per week for 30 minutes. Well, UCP will provide Aiden 1:1 therapy if they believe that is what he needs (still free to us), but also use the "group therapy" concept if it works for his goals. Basically they will do what is best for Aiden.

The school will give us a written report of Aiden's progress and what they worked on with him EVERY SINGLE DAY when we pick him up. I think that is amazing! Also, there will be a meeting offered to us every 3 months with Aiden's teachers, speech therapist, the director and us to go over Aiden's goals, how he is doing and what changes or adjustments need to be made to his goals, basically assessing where Aiden is developmentally every 3 months, verses the once a year we would get at the public school. WOW!

The class follows a daily schedule of course, but what I LOVED was on the door an newspaper article was posted. It discussed the fact that public schools (especially at pre-k) age aren't encouraging physical activity at school. In fact, that is one of the reasons we knew we would NOT be sending Aiden to Bonneville Elem. We were told at Bonneville when we toured there that there is no playtime, all academic (at 4 years old????). At UCP, Aiden will have playground time (which is amazing for socialization and speech), and then also in his day will be "walking" time. WALKING time! I LOVE THIS. I mean, how often to do you find a school that IN their curriculum they encourage taking a WALK as a group. Walking, talking, looking, exploring, socializing, smelling, and the list goes on. I don't know why, but this really touched me. Aiden's class also gets MUSIC THERAPY once per week. Umm... you think I like this? How absolutely AMAZING!!!!!!

In August, their new facility will open. This is a brand new state of the art facility with double the classrooms all the way up to Grade 3. It will have 2 playgrounds, indoor gyms and much more. We do hope and pray that Aiden does well over the next year and a half or so, and can go to Kindergarten at East Lake Elementary School where Anna goes, BUT.. if need be, this school will be there for Aiden.

So... we called Orange County Early Intervention to let them know that we have found the perfect match for Aiden, and the paperwork is in motion. We plan to have him start at UCP on March 17th. He'll go Mon-Thur from 8:30 - 11:30am. Afternoons and Fridays are for private speech therapy and MOMMY time!!!!

As of right now, we go back to the neurologist at the end of March to discuss the results of Aiden's latest bloodwork, and talk about what to do next.

Things are finally falling into place though and we look forward to Aiden getting what he needs to get better and caught up.

Alright, there you have the latest and greatest!

It's nice to be home, sitting in my family room with Anna and Aiden and Will. Not the easiest 24 hours, but at least we can resume the week with more normalcy. :)

Love,
Holly

The 24 hour EEG - The Day Time Stood Still

Here we sit, in the EEG room for 24 hours to rule out any seizure activity with our precious Aiden. My last post was primarily about the therapy side of things, and what we are going to do regarding all of that. I failed to talk about the MEDICAL side of things. We still have ABSOLUTELY no idea what happened to Aiden. As a brief recap - we have already gone through a 1 hour EEG, MRI of the brain, blood tests. Everything came back inconclusive.

So now (as in right now) we are going through a 24 hour long EEG. The doctor also is having more blood checked for other things (lyme disease, metals, other things). If that comes back inconclusive.. Aiden is most likely going to undergo a Spinal Tap test.

All the therapists we have seen since all this started strongly feel that some sort of brain injury or trauma happened to Aiden (be it a stroke, seizure, or something else). Hopefully one of these tests will give us some answers. But I have to admit I'm preparing myself for NO answers. We may never know what caused all this. I hope that isn't the case but one must be prepared for all possibilities.

The good news is that Aiden continues to improve. His speech and communication is better and better everyday. He is absolutely 100% no longer ticking in any way. No more rapid eye blinking, throat clearing, arm flailing. Nothing. (YEY!!!!)

It would be nice to get a medical diagnosis though so we can do EVERYTHING we can to prevent this from happening again!!

In the meantime - I do have an update on the school and therapy decision. My last post talked about 4 options that we have. Well we have definitely narrowed it down. We went to Bonneville Elementary to check out the public school special needs class. Without getting into details, this is NOT an option to us any longer. We will NOT be sending Aiden there.

We JUST a few minutes ago found out that Aiden HAS been given a spot at UCP Charter School if we want it! This is HUGE news. We still haven't toured there yet, and talked with someone about Aiden's situation, but this is a VERY exciting option for us. Here's the website if you are interested in this particular school. http://www.ucpcfl.org/. What is really exciting is that a new building is being built right now and the facilities come next school year are going to be state of the art!!!! Check this out: http://www.ucpcfl.org/EO_Bailes_Campus.shtml.

We have an appointment there tomorrow at 1pm to tour and speak with them about Aiden... I'm guessing that by the end of day tomorrow we'll have our answer on what we are doing. If we choose UCP, it will be FREE because Aiden qualified through the school system AND he'll get his FREE speech therapy right there at school as well. This could be really great for him. At the same time, until we see the school, meet the people and decide if it's right for Aiden.. we will not get TOO excited.

So.. that is where we leave things for now. I'm attaching a picture of Aiden at the EEG taken with my phone so not the best quality.. but you get the idea. We are here at the EEG ALL night until the morning. Send good vibes and prayers!!!!!!!!
















Love, Holly

The Curious Case of Aiden Lesnick

Hi Everyone,

Thank you everyone for all your love and support during all this. It really means so much to us, and brings us comfort as we go through the trials and tribulations of this entire situation. Will has appropriately deemed this "The Curious Case of Aiden Lesnick". :)

Last Wednesday, Aiden started private speech therapy. For the first session, it went well, though Aiden was very reserved. However, IMMEDIATELY following the session, he started talking like crazy. More than he was. It was quite interesting. Over the weekend he continued to talk, label, and surprise us in so many ways. Yesterday (Monday) was Aiden's second private Speech Therapy session. OH MY GOODNESS what a difference!!! He was amazing. I won't describe it too much yet because I have a letter from the therapist which describes it so beautifully. Yesterday, we were sort of gearing up mentally for the meeting scheduled today (Tuesday) with Early Intervention Services. In preparation for that meeting, I thought it would be helpful if Aiden's therapist Jane wrote a brief letter detailing Aiden's weird and rapid progress. Mainly because the meeting we attended today was reporting on the Aiden they assessed 1 month ago. An entirely DIFFERENT Aiden. Here are some of the things she said:

"I have seen Aiden Lesnick for two, 30 minute speech-language therapy sessions. If I didn’t know better, I would have thought that I was working with two different children.

During the first session, Aiden did not greet me and used very little eye contact. The few words that he used were all imitated and were typical of echolalia. Aiden did not comment on things in his environment and he did not make any requests. Aiden’s attention span for tasks was very short except when we played with cars. Aiden had a very flat affect—showed very little emotion.

During the second session, Aiden came in with a smile, looked at me, and said “Hi” when he was given a prompt. When given a verbal prompt, Aiden was able to attend to tasks, name common objects, and use short phrases and sentences. Aiden made a few requests and said a few things spontaneously. Aiden’s demeanor was very different than it was in the first session. His eye contact was much improved and he smiled and clapped his hands appropriately during songs and a game of bowling."

She does go on in the letter to say that he is still speech/language delayed and will benefit highly with more help of course.

So today we went to our Early Intervention meeting. In attendence was the developmental specialist who assessed Aiden, a speech therapist, and a staffing specialist. Everyone was so warm and kind. They first reported on Aiden's results, but acknowledged that they understand he is different now. Then they read the letter that was written by Jane, our private speech therapist. With all that new knowledge they re-wrote (with us) new goals for Aiden that are more appropriate with his new skills that he has re-aquired. They explained to us that Aiden has qualifed for FREE speech therapy 2x per week for 30 minutes. He has also qualified for part time Developmentaly Delayed school. We did find out that free speech is a Group Speech environment, not 1:1. SO... we are SO happy that he is getting the 1:1 therapy already through the private practice. We intend to keep that going along with the free group therapy. We were offered two options. 1) just speech therapy - this would be done at East Lake Elementary where Anna goes to school. 2) Developmentally Delayed school at Bonneville Elementary where he would get speech during the school time. This would be 2 1/2 hours per day. Not a full day each day.

Our dilemma really is towards the Developmentally Delayed school. All the therapists agree that children learn from their immediate environment. We are concerned that if we put Aiden in a classroom with children that may have more severe delays or behavioral problems, that this could affect him negatively. At the same time, it would be a small group setting where Aiden would get WAY more attention and focus. hmm... We decided to leave the meeting without deciding yet. This means we have to go back downtown to sign the papers when we figure out what we are doing. We really feel we want to OBSERVE the actual class Aiden would be joining at Bonneville Elementary before we agree to put him there.

So, Will and I went to Panera for lunch to talk things over, and just de-compress. Sitting next to us was Anna's Sunday School teacher. She said hello, and engaged us in conversation, and asked us about Aiden. Her friend sitting opposite her contributed to the conversation by letting us know her son had serious delays a few years ago, and goes to a school nearby called UCP (http://www.ucpcfl.org/). She spoke so highly of the school, and then told us that it is a charter school, and if Aiden has qualified through Orange County (as he has) then it would be FREE to send him there! Oh my, something else to investigate and ponder. Anyone find it strange and interesting that we ended up next to this woman in Panera RIGHT AFTER our meeting at Early Intervention services. Wow! She gave us their business card which she had with her, and Will and I decided to run over there before picking up Aiden from school. We went in, and requested a referral to speak with someone there. We were told that we would be called back within 48 hours.

We picked up Aiden, who had a pretty good day today at school. He just LOVES it there. We spoke with his teacher who loves having Aiden in class, but did express that sometimes she wishes she could do MORE for him, but with the class size and her lack of qualifications that folks would have at the special school, she sometimes is frustrated. At the same time, Aiden doesn't "stand out" often in class as "different", and for the most part does very well there. We did discuss the fact that on Mon/Wed/Fri at Aiden's current school there are only 5 children in the class. So.. we could move days and have him in a smaller class setting so the teacher can work more closely with him. hmm....

While we were driving to pick up Anna from school, we got our call from UCP. 48 hours? More like 30 minutes! Wow, quite impressive!!! They asked some questions, and explained that they are having a meeting on Friday and will find out if there is currently space for Aiden. If so, we'll go in and speak with them.

We also spoke with the staffing person over at Bonneville Elementary. We arranged to go TOMORROW to observe the class that Aiden would be in if we chose this route. So.. we'll see what we think about that option tomorrow. So much to think about!

As I see it, we have 4 options:
1) Pass on the special school, keep him in his current school, and have therapy 4x per week for 30 minutes (2 group, 2 private)

2) Accept special school at Bonneville where he would get group therapy 2x per week, while continuing private therapy 2x per week.

3) If an option, send him to UCP where he would get therapy 2x per week there, while continuing private therapy 2x per week.

4) Pass on special school, but change days at his current school for smaller class size, and have therapy 4x per week for 30 minutes (2 group, 2 private)

To be honest, we have NO idea what to do. We really don't. We are torn. We are confused. Aiden is changing so much everyday, that we really don't know what would be best for him. We want someone to just give us an answer, but the fact of the matter is, there is no right or wrong answer.

If there is anyone reading this who has any information on any of this, or the different schools, opinions and feedback are welcome.

We don't want to wait too long to make a decision, but we want it to be the right one.

A side note: Anna's Sunday school teacher couldn't say enough about Anna. She can't believe after only being in Sunday school just a few weeks, that Anna virtually knows the entire Hebrew Alphabet. Anna has studied that completely on her own, and is pretty much caught up to where the rest of the kids are at who have been going all year. That's our girl!

Sorry this one was so long, but I guess I had a lot to say. :)

More soon.

Love, Holly

Love is in the air....

I first want to wish all my friends and family a belated Valentines Day. We had a nice weekend. Will and I went to one of our favorite restaurants, Colorado Fondue on Friday night to celebrate V-day. Here's a picture before we left.





















We had quite the family weekend after that. First a birthday party to go to. Then we went to visit my mom, where we of course had to pratice our Guitar Hero skills. Then we took the kids for some Valentines Day ice cream.



























































Then on Sunday, Anna and I had a date at the Orlando Repatory Theatre to see "Junie B. Jones and a little Monkey Business". I buy season tickets for her and I each year for shows I think she'll enjoy. This one was a sure fire hit! And.. the most exciting part.... Anna has always been quite tentative and shy to go meet the actors for their "meet and greet" after the show. She told me a few months ago that when she turned 7, she would do it. Well, this was the show she decided to go for it. So, after the play was over, we waited in line to meet "Junie B. Jones" and got a picture.



































Sunday night we had our friends over for dinner and hanging out so that was fun!

The week has begun and on the Aiden front, we are scheduled to start speech therapy tomorrow. I'm SOOOOO relieved and look forward to getting started. I spent a whle on the phone with our therapist today and she seems quite baffled (along with everyone else), but also very excited to meet Aiden and help him the best she can. :) YEY!

Well, I believe that's all I've got for now! Until next time!

Love,
Holly

A few more birthday pictures

A friend just shared some pictures that she took at Aiden's birthday party. Thought I would post here. :) Enjoy!

more on the Aiden front....

Okay, I have some form of an update on Aiden.. I'll address that first, and then share some pictures from his birthday party.

Today we took Aiden back to the private speech therapist to try again for that initial assessment. Aiden was definitely more willing to work today, thank goodness. The first 10 minutes he sat pretty quiet and shy.. then he started to open up and answer questions, or at least point to the pictures, etc. There was a period of about 15 minutes where Aiden was doing great. He even spoke in 4 and 5 word sentences to the therapist. We were really happy about that because she could really hear his speech. She also just observed him in general and noted that he makes great eye contact, smiles and interacts, follows directions for a period of time, and scans the pages well to find the correct answers. He did not tick AT ALL, and hasn't been for a bunch of days now.

At the end... she talked to us, and we realized we have THREE different things we are looking at:

1) She concurs that whatever happened to Aiden a month ago is medical. She feels this is pretty obvious, which is the same thing the other therapists said at our other assessment. So, we must push forth with trying to get some answers that way. The 24 hour EEG is in our future, more bloodwork, and a possible spinal tap.

2) Regardless of what is going on medically with Aiden, she feels he should be assessed by a behavioralist. Why? She thinks Aiden is possibly CHOOSING to not answer questions at times and choosing when to comply and not to comply. She said Aiden displayed today that he knows the answers in his head. What does this mean? Well, that Aiden is strong willed, and if something seems "hard", he just says "forget it" and would rather not try, and gives up. She thinks a behavioralist could really help us with this area.

3) Today the therapist let us know that Aiden's speech is FINE. She said his speech is completely clear and intelligable, and the few letters that he struggles with are completely age appropriate. Yey, great news! BUT.. she said his area of struggle and delay is in the language/communication area. So this still falls in the realm of needed Speech Therapy - just not specifically to work on his speech, but more so how he processes his thoughts into forming his language. (hope this makes sense). Again, this goes back to helping his behavior from his frustration.. so we can get somewhere on this end.

So... we are going to set up a HOME assessment with a behavioralist. Apparantly this team also has a psychologist on the team as well, so if we need that it's there for us. Unfortunately, this is the first "service" that is NOT at all covered by insurance. Scary.. but we will figure something out.

As I have said before, right now we are watching Aiden in developmental fast forward. This kid is catching up on what he lost each and every day. He is "recovering" from whatever it was that happened to him. We feel SOOOO blessed by this. The question is WHAT HAPPENED?? This is truly the scariest part of this whole thing.

Okay, so Aiden's birthday party. A few weeks ago, Aiden wouldn't have handled it very well. But WOW did he have a good time. He got right into the spirit. He greeted some of his guests by name (his greetings and salutations are coming back, yey!). He sang along with every song I did. He danced, played with his friends, sang along to Happy Birthday, blew out his candles, ate his cake and was the happiest birthday boy on earth that day! Our friend Paul made the cake as you will see below. Aiden LOVES any transportation.. so his cake was a racecar. So cool!!!!! So.. here are some pictures below to enjoy. I'll be back with another update soon!












































Love, Holly

Our Aiden is four years old!

Our little boy is officially FOUR years old. We can't believe it!

On Thursday (Aiden's birthday), we had two appointments for him. The first was his 4 year well visit with our pediatrician. We were glad to be there to update him on what has been going on since he referred us to the neurologist. He is just another one that is simply perplexed as to what is going on with Aiden. Aiden however, was NOT happy to be there. I think he has finally made the association that visiting the doctor means getting poked, prodded and messed with. It was his birthday, so he had every reason to object! :) Anyway, he definitely was in a "mood".

Then we took him for his 1:30pm Speech therapy assessment with the private practice. Again, he didn't want to have any part in it AT ALL. So.... we are scheduled to try a re-do assessment on Tuesday morning. We really hope Aiden is up for it, so we can get him started on speech therapy.

Once a month Anna's dance friends and the moms go out for pizza night. It just so happened that pizza night this month happened on Aiden's birthday. Usually boys are not allowed, but we made an exception and celebrated Aiden's birthday with pizza and cupcakes!













It is now Saturday night... and today was a great day. The last few days Aiden was not really a happy camper. We didn't see him regress neccessarily, but at the same time, he was ticking a bit and very grumpy. I actually think he was a bit under the weather. Today however, was a GREAT day!! He has now started to greet certain people with hellos, he's doing a lot more talking in general. He is starting to answer questions here and there. Again definitely moving in a forward direction from where he was when this whole thing started.

Tomorrow is his birthday party which I decided to keep pretty small and calm as not to have him get overstimulated and overtired. I hope he has a good time and is up for it tomorrow. I'm doing some Kindermusik fun at the party which is his favorite thing in the whole world. So.. lots of pictures to come from the party.

I'm really hoping that on Tuesday we can get somewhere with the private therapy. So keep your prayers going because I think they are working. Our little guy IS doing better (of course we still have NO idea what is causing this).

Today we had a nice day at a local event where the Orlando Philharmonic played an outside concert of Peter and the Wolf. We met up with Rachael and her kids, and Will's parents are visiting this weekend. We had a great time, and Anna and Aiden LOVED it! Here are some fun pictures from that! Another birthday party update coming soon, and then of course more news about Aiden's tests and therapy as it comes in.





















































Love, Holly

Good day for Aiden!!!

Today is definitely a good "Aiden" day. It really is like we are watching our son in "Developmental Fast-Forward".

First, Aiden slept really well last night and woke up reasonably 0n time to make it to school. We know that when this happens, it's going to be a better day, than either a broken sleep or LOOOONG sleep (like the one he had the night his episode happened).

Aiden's teacher told me about something that happened today that shocked them. I guess the kids were asked to clean up and whoever helped would get 2 M&M's to eat. After the cleaning session and they were in their circle, Miss Kelly went to each child and thanked them for putting away this or that. She got to Aiden and said "Aiden, I didn't see you put anything away, did you?". He replied with, "I put away the doll". They were SOOO happy to hear him speak clearly, and also express himself. Of course he got the M&M's. :)

Then after I picked him up from school, we had a bit of time before we had to pick up Anna.. so I took him to a nearby playground to play for a few minutes. I told him we had to get Anna soon. He said, "I want to go play". Again, he amazed me!!!! He just hasn't been expressing himself like that at all.

Just a week ago, Aiden was barely speaking.. and now he is sporatically using 5 word sentences. wowie!!!!

He is still quite quiet most of the time, and sometimes still gets very frustrated.. but boy, what a difference a few days make. Sooooo strange that he has come this far without any therapy or anything!

So....... tomorrow is AIDEN'S 4th BIRTHDAY!! I can't believe that!! We do have an appt. with our pediatrician. Then we are going to the private therapy assessment to hopefully line up some speech therapy. I'll keep posting...

Love, Holly

Overdue for some pictures....

Just wanted to post pictures since it's been a while... things have just been too upsetting and overhwhelming lately so I had sort of stopped. But today was a good day and I snapped some photos. We went to a birthday party, and it was wonderful. The kids had a ball, and Aiden was AIDEN today. He climbed like a monkey all over the playground, swung the bat for the pinata, and didn't tantrum once because he was able to express himself verbally. Mostly Aiden is speaking with 2 or 3 words at a time. What a HUGE difference from a few days ago! :) So hope you enjoy these!

I love the 2nd one of Anna and Will on the bench. They didn't know I was snapping pics so this was just a sweet moment between the two of them.
































































































Hope you enjoy. I will continue to update on the Aiden front of course as things develop....

Love, Holly

Small update and a little fun...

The last two days with Aiden have been WONDERFUL. He is starting to answer questions. He even used a 5 word sentence! As each new day comes, this thing gets more and more bizarre as he continues to improve. It really makes me think something medical happened. Not much to report on all the testing/therapy from except that we have an appointment with a private therapy practice on Wednesday. We feel if we can start this NOW he will only continue to get better and better...

Please pray that whatever happened to Aiden doesn't happen again. That is what we are scared of the most.

We are going to enjoy a fun weekend together with lots of events to go to... and we'll just watch Aiden and see how he does.

And now for something fun...
There is this thing going around Facebook right now to list out 25 Random Facts about yourself and share them with everyone. I finally put mine together and thought I would post them here. What better place than my personal blog?

So here we go:

1) I love Rainbows, they can instantly make me happy despite what kind of day I'm having. The people closest to me know this, so I tend to get calls when someone spots one.

2) Music is what makes the world go around, and I'm blessed each day with the magic of it.

3) I wasn't admitted to FSU based on my SAT scores and grades. The School of Music let me audition, and because they wanted me, they overrode the admissions dept. to let me in. (thankfully I became a good studier in college)

4) I have serious test anxiety

5) My biggest phobia in the world is roaches. My heart starts to palpitate

6) I get stage fright. I feel this has kept me from fully acheiving my goals and have considered hypnotherapy.

7) I am NOT a morning person. If I go to sleep before midnight, I feel like I've "missed" something.

8) I have a weakness for bloody mary's.

9) I met my husband Will at FSU in 1992, but we didn't start dating until after we became roommates after college when I realized I couldn't live without him.

10) I love sarcasm.

11) I live way outside the box

12) My mom is my hero

13) I'm addicted to my blackberry, starbucks, chocolate and sushi

14) I never knew how much I would love my children, but I'm bursting!

15) I have a very strong Jewish identity, but am not religious. I rely on my own definition of faith.

16) The glass is usually half full (I'm the eternal optimist).

17) I have a weakness for indy movies that have shock value.

18) I'm logical

19) I don't mind being short except when walking with a group of people who I can't keep up with. My husband had to learn how to "walk" with me, and shorten his strides.

20) I'm very freaked out about my son right now, but have faith all will be okay

21) Before finding Kindermusik, I was a music therapist where I worked with geriatrics, drug rehab and pyschiatric patients.

22) I am so thankful for my friends and family.

23) I love going out with my girlfriends

24) I want to travel SO badly... I hope life leads me in that direction someday

25) My life has been wonderful so far, but filled with a lot of loss. I choose to consider life a gift and each day I am thankful I am here. I love being a part of this world.

Thanks for reading and have a perfect day.

Love, Holly

A good day....

Hi everyone! Here's my update:

Today we took Aiden to Early Intervention Services with Orange County Schools. I was a nervous wreck because I had NO idea what Aiden would be like as each day is a new adventure. Well, as is Aiden's trend, he was better today than yesterday. Each day he shows more and more of his old self from before the episode.

We were brought into a room with 2 therapists who were very nice and great with Aiden. They assessed Aiden in many areas. Tested him on all sorts of cognitive things and skills. Aiden did GREAT! In the speech department, he DID speak as related to pointing out pictures, etc. He didn't answer questions. He DID give high fives. He smiled, made eye contact, play games and laughed. He was a little gentleman and did as he was asked. He was not ticking. We explained Aiden's story to the therapists and answered all their questions.

At the end of the assessment, both therapists expressed how completely confused and baffled they were about Aiden. These are people who see hundreds of kids,and they were baffled. Yikes! What else is new right? They both felt that this really feels like something medical. That SOMETHING happened. They agree that it's strange that a child would lose abilities overnight and then start progressing back right afterward, without any therapy.

One of the therapists left the room for a second and came back explaining to us that she went and spoke to the "head honcho" who they refer to as the "Oracle" because she has seen it all and knows everything. The Oracle said that in her 30 years in this field she has only seen 1 other child like this. We have yet to find out what happened with that child and what was diagnosed.

Regardless, Aiden will most likely qualify due to his language regression. We are scheduled to go back on February 24th for a meeting to learn how Aiden scored and what he qualifies for in the school system. The therapist did say that he will most likely qualify for speech therapy and "maybe" qualify for school. The school would be a Mon-Fri schedule where he would have lots of therapy. While we know it's great he did well in the assessment, Will and I both agree that developmental school could be a great thing for him and probably help him move forward even faster.

The assessment took a bit over 2 hours and Aiden handled it wonderfully. Just to clarify some things from previous posts about the "spectrum". It was explained to us today, that if a therapist feels a child is on the autistic spectrum at all, they call in a specialist person at the assessment to further check things out. Both therapists told us that there was NO WAY they were bringing that person in to look at Aiden because he is most definitely NOT on that spectrum. They do agree that what is going on is strange, and mysterious, and weird. So, we feel comfortable ruling that possibility out. So that is where we are left with today's early intervention experience.

A couple weeks ago right after Aiden's episode, we brought him to Kindermusik and it was SOOO upsetting to watch him freeze in place, confused, wimpering, scared, and silent. Today, we tried again. Will brought him into my Kindermusik class. Aiden was AIDEN today!!! :) He clapped, danced, played his instruments to my instruction, twirled, jumped, and had a ball. He really is changing back to himself each day. It's SOOOO weird. But it's SOOO wonderful.

So, us, the therapists, and doctors all agree that at this moment in time, Aiden is a case study. We will follow through with the medical testing while praying another episode doesn't occur. We will return to Early Intervention in 3 weeks to find out what he qualifies for and get him started RIGHT away. We also have already looked into what our insurance covers regarding private speech therapy, and it seems they cover so we'll be calling a private practice tomorrow to possibly line up speech therapy that way too because the sooner we start the better.

We are on a high today after watching our precious boy have such fun in Kindermusik. It broke our hearts to week ago to see him and today has been a HUGE sigh of relief to see some of our Aiden return!! Now for the language!! :)

In other news, Anna is VERY excited that tomorrow is the 100th day of school. She had a glowing report card. We are so proud of her!

My update for the day is complete. Have a perfect night!

Love, Holly

My thoughts today...

Yesterday was just so overwhelming and we just didn't know what to think. Well, we still feel that way today...but here we are a day later, and of course have had some time to let what information we DO have sink in.

I do think all this stress and worry is affecting my immune system... as I just got home with some meds to treat a bladder infection. OUCH! I've never had one before. Not fun! I was also at the dermatologist for my routine bi-yearly check where they biospied 5 spots, 2 of which are on my NOSE. I'm currently walking around with a big bandaid on my face, and a bladder infection. Good times..

Anyway, Aiden has had another REALLY good day. He has been happy go lucky. Woke up this morning and worked on potty training. Still not having the easiest time with that. Then he proceded to pick out his clothes and get dressed all by himself. He was using a TON more words than yesterday, this time putting 2 words together. He wasn't ticking hardly at all.

So, honestly, Will and I are a bit perplexed! While Aiden has a FAR way to go to get back to where he was 2 weeks ago, and then of course move forward to catch up to age level, he is progressing along again. Regress, progress. This further makes us question what is going on with him. I mean, we know that overnight "something" happened. We now know that since that episode (whatever it was), he is getting better. This is before any therapy, AND during a couple of pretty stressful weeks for the little guy.

I'm feeling good that we are going for further tests on anything that could have physically happened with him. At the same time, we don't want to discount that this could be deveopmental delay only. It's just SO weird because from what has been observed by the doctors and us, what is affected is his speech/language. His cognitive abilites are in tact. His activities of daily living are great (aside from the potty thing). The ticks seem to be diminishing. What to think? what to think?

Well, we are VERY happy that tomorrow we'll talk with some therapists and get the perspective on that side of things. Of course we are happy that Aiden seems to be improving. At the same time, it seems odd to us that if this IS only a developmental issue that he would be improving that QUICKLY after what we call the "episode". From what we have read, that just doesn't happen.

*sigh*

Futher confusion ensues.

I'll keep updating. It feels good to blog and get this stuff out there, and through blogging we have had some really great ideas, resources and referrals from people.. so I plan to continue! Keep reading...

and now, my darling wonderful husband has brought me home Sushi for dinner. He knows I needed that!!!! I'm going to go enjoy my amazing family. :)

I'll update after the therapy session tomorrow. It's supposed to go at least 2 hours and is scheduled to begin at 12:30pm.

Love, Holly

Still no conclusive answers...

Okay, so we just got back a bit ago from the Pediatric Neurologist. The first surprise, his EEG came back normal. We were almost convinced something was going on there... We still aren't convinced it isn't.

The doctor looked at Aiden, and did some cognitive testing etc. Aiden did really well on some things, not so well on others. When asked to identify colors, animals, etc. he did great. Would he give the doc a high five? No way! (but he is giving them to us! :) )He wouldn't answer his questions like his name, age, etc. But.. behaviorly like following directions, mannerisms, etc., the Dr. acknowledges that Aiden is great. hmm...!!!

Since the weekend Aiden has been doing GREAT at home. He IS talking to us more, and not ticking quite so much.. though it's still there of course. It hasn't gone away. He is still behaving great - follows directions, etc. But is still having lots of trouble expressing himself verbally.

Okay, so what to do? What to think?

The doctor is NOT ready to rule out that something is going on seizure wise.. so Aiden is now to undergo a 24 hour EEG test, along with more blood testing. Yes, 24 hours of EEG. We are not sure when that will be yet.

BUT.. the doctor (and us) wants to be pro-active and not wait any longer to get Aiden some therapy help. We all know that with whatever is going on with him, he needs therapy and help.. so he gave us a prescription for Occupational Therapy and Speech Therapy. Yey! We don't have to wait until Feb. 10th to try to "qualify".

Will called over to Early Intervention Services, and they have us coming in on Thursday of THIS WEEK. Yey again! So.. Aiden is to start his therapies ASAP! I look forward to updating with only good news in those areas very soon.

As for what we think is going on? We really aren't sure. Will and I have to look at the possibility that Aiden is NOT having seizures, and that this is a purely developmental disorder. As we ALL know, Autism is the buzz word out there right now. Well, the doctor agrees that he exibits only 2 symptoms for that (language and ticks), so he doesn't quite fit into that description. He could very well, be on the developmentally delayed "spectrum" but be a VERY mild case. While this isn't great, it could be way worse right? We (and the doc) are not really focused in on "labeling" him. All we know is we want the very best for Aiden, and to get him the help he needs. Not in a week, not in a month but RIGHT NOW -- which is what we are doing.

So.. Therapy starting this Thursday, 24 EEG coming soon, then we move forward and help this little guy the best we know how.

There you have it! I'm hanging in there, though Will and I are having a hard day. At the same time, since we have been home has been enjoying our lovable, fun, somewhat talking Aiden who does nothing but makes us smile! :)

Love to all --- I'll update soon.

Holly

What we know, what we don't yet know.... - Aiden update #3

Hi everyone,
Well, here we are, Sunday night. We have only another day and a half until our appt. with the pediatric neurologist. This time can't go fast enough.

On Friday afternoon we did find out some good news. Aiden's results for his MRI and Bloodwork came back. They all came back normal. This is great news as it rules out any physical abnormalities in his brain such as tumors, etc, which could have been life threatening.

This also further leads us to our working theory that the EEG is where our answers lie. I have been doing a bit of research about Complex Partial Seizures (the disorder the EEG tech told us about) and while we are in no way doctors and in a position to diagnose, boy does he match up with what is explained under that disorder.

Aiden was doing a bit better with his language at the end of this week, but once again on Friday night/Saturday morning, he had a VERY long sleep. He went to bed at 8pm and woke up at 10:30am. We are starting to realize that his "bad mornings" are going to be after these long sleeps that he's been having lately. He woke up and basically had his ticks, or what I have now learned are called Automatisms for at least 2 hours straight (I was alone with him because Will and Anna were at the Vet). He was clearing his throat/swallowing, blinking his eyes, biting his lip and curling his tongue and now a new "tick" of flinging his arm involuntarily. I tried to keep things calm for him during this time so he could calm down a bit (but I was freaked out, I'll admit it). After about 2 hours he did calm down, and while he "ticked" throughout the day.. it got a bit better after that. By nighttime he was happier and playing. Still not a lot of talking, but at least he wasn't constantly ticking like first thing in the morning. Poor thing. Today he has been ticking on and off, but relatively happy, and has been using more words than he has been.

Well that is our Aiden update... for now. More info to come Tuesday afternoon. Please send us good vibes for a diagnosis so we can help our little guy!

Anna has been such a trooper through all of this. I know it can't be easy for her to not only see these changes in her little brother, but also see her parents worried and quite consumed with this right now. On Friday night my mom came over and spent some 1:1 time with Aiden, and we took Anna out on a date to the movies. It was nice to spend some time with her, and relax. :)

Also, Anna has recently expressed a strong desire to go to Sunday school and learn more about being Jewish. This is not something we have pushed her to do, but something she came to us about. So, of course to embrace this.. we looked into the newer congregation that is in East Orlando and Anna has happily begun religious school to learn Hebrew and jewish traditions. She absolutely loves it, loves her teacher, and the new friends she's made there already. We are so proud of her!!!

That is my update for now. Good news, and not so good news, but these are the days of our lives.... ;) Keep praying!

Love, Holly

Please pray for our little Aiden - part 2

Since my last posting below this is what has happened and where we are at:

Last week Aiden had blood drawn for testing. This week on Tueday, Aiden had his EEG test. We had to keep him awake almost all night, so he could go into the test sleep deprived. While this wasn't the most fun we have had, Aiden was quite a trooper. We showed up for the test, and the tech couldn't believe how easy he was to deal with. :) Aiden handled the "awake" part of the test fine, but did start "ticking" at we have started calling it, the minute the strobe lights starting flashing. Then as if right on cue, Aiden fell asleep and they were able to administer the test smoothly. We did find out that they are mostly looking at something called Partial Seizure Disorder. Who knows if that is what is is though until we hear it from the neurologist. Just a theory.

Wednesday we were all recovering from being sleep deprived!

Today Aiden had his MRI of the brain. He had to be sedated for this test which was a little unsettling.. but Aiden did great. He was woozy and wobbly for a couple hours after, and went to bed happy.

As far as Aiden goes, this week.. he is coming back to us a little bit each day. He is saying a few words here and there. Still no hellos, goodbyes, name recognition, conversing, etc. But.. we can see his personality coming back more and more and are hopeful with each day that he'll start talking to us again. Of course we are quite fearful that something else will happen to further set him back before we are able to diagnose and get him help.

The good news is thanks to our doctors, all his tests were done really quickly, and our meeting with the Pediatric Neurologist is on Tuesday. So, hopefully Tuesday we'll have some answers -- because then we can do something. So, over the next 4 days, please think about our little Aiden and our hopeful diagnosis. Our appt is on Tuesday morning at 10:30am.

Love, Holly

Please pray for our little Aiden

Hi all,

I don't even know where to begin, but wanted to fill you in on what is going on in our world right now. As some of you may know, Aiden has been a bit delayed in his speech. We hadn't been too worried. We took him to Early Intervention Services back in November to have him assessed to see if he qualifies for Speech Therapy. He did incredibly well on that assessment which included a hearing and eye test, and LONG cognitive test. He passed all with flying colors, but his speech did show some signs of delay, so they asked to see him back around his 4th birthday (Feb 4th) to assess where he is at. This assessment is scheduled for Feb. 10th. After that initial assessment, his speech actually improved and we thought we were moving in the right direction and all would be fine. He started doing GREAT in school, and other areas.

However, about a week or so ago, Aiden went to bed his usual self. Talking up a storm. Working on his speech to the point where if he wasn't happy with how it sounded, he would stop, go back and try again. All was well. The next morning Aiden woke up and was "different". He wasn't talking. He was squinting his eyes repeatedly. He seemed VERY "off". We thought at first that it was probably a phase, as Aiden has had lots of phases that he has gotten past and moved on from. But... after a few days of no talking, and weird behavior, we took him to the doctor. The doctor examined him thoroughly. On the outside physically Aiden appears to look fine. He is also playing like normal and is as friendly as ever, but his signs of language regression and ticks (the blinking of the eyes and constant clearing of the throat) is very alarming. We have been put on the fast track to test him and see what is going on. They are testing for any trauma to the head/brain, and also brainwaves to see if he is having seizures, along with blood tests. Tomorrow Aiden will have his EEG. This entails us having to only allow him to 5 or less hours of sleep tonight (so we are putting him to bed around 2pm, and waking him before 7pm).

Aiden has improved in some areas since his initial wake up on that very bad day. Cognitively he still has all his information, thank goodness. For example, if we show him a number and ask him what is is, he can answer as clear as day! If we lay out a pile of letters, and ask him where a "W" is, he picks it up and says the letter CLEARLY! But.. if you try to have a conversation with him - no dice. He will not answer. He sometimes will try, and all that comes out is babble, followed by STRONG frustration. It's like a 2 year old who has his thoughts but can't get them out clearly and in turn tantrums. Thankfully we can still reason with him, so if we talk to him, we can easily calm him down since he understands as a 4 year old would. He just can't verbally express himself right now. He used to be great at greetings and salutations. Now he doesn't say hello or goodbye, doesn't use name recognition and just usually won't respond. Not our Aiden at all. As you can probably imagine, Will and I are quite distraught about all of this. I'm having a very hard time right now and just trying to stay as positive as I can but finding myself falling pretty depressed.

Soon Aiden will have an MRI of the brain (not sure exactly when that is yet), and will have to be sedated for that. Our consultation with the pediatric neurologist is on January 27th where we hope to find some answers. This is a doctor that has been repeatedly recommomended by many people I know who have children with seizures. He is apparently the best in the area. Only the best for our little guy.

We are finding that Aiden does best in his home environment right now. We can quietly work with him, and play and he seems calm and therefore less frustrated and not a lot of ticks. We do find the more stimuli the more aggravated he becomes right now. Having said that, we took the kids to Disney yesterday, and as usual it was a very nice day with our two amazing children. So... aside from the language/communication issues, Aiden is doing okay in public situations. We are trying to be as honest with Anna as we can, without scaring her too badly. Of course, she is quite tuned in to what is going on, and notices the changes in her little brother.

I'm sending this to my friends that are in my inbox, and any family that is also in my inbox. If you see I've missed someone, or there are other family members who would like to know what is going on, please feel free to forward.

We will keep you updated as we get information.

Love, Holly (and Will, and Anna)

Where in the world is AIDEN?

I'm totally behind on my posts, but this just couldn't wait!

Will was panicked looking around the house for Aiden. Normally all we have to do is whistle the spongebob squarepants theme song and he responds.. well, not this time. I became panicked and started searching with Will. This is what I found!




Apparantly Aiden was tired, so he decided to get cozy in his Halloween costume and take a snooze on our foyer bench! How cute is that???? So... he's either growing, or getting sick. We hope it's the first!

Have a great night!

Love, Holly

Anna's Operatic Debut!

We are SO proud of Anna. She was chosen by her school music teacher to sing with the visiting Orlando Opera singers that came to her school today! They practiced last week, and today, she got to dress up and sing on stage! She had a GREAT time and Will, my mom and I were there soaking in every second! This was the amount of video my little digital camera would let me record... but you can get the idea!







Yey Anna!!!!!!