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!!!!!!

Our Philly Trip

We took a quick trip to PA a few weeks ago. Will's first cousin Caleb got married, so we enjoyed a little getaway to the beautiful fall weather. First we spent some time with my Aunt Rhea and Uncle Steve. They took us to a really fun Kid's Castle in a neighborhood park. The kids LOVED it! We also spent a little time at a Fall festival as well with Molly and Alan. They it was wedding time. Here are some fun pictures from our trip!









I hope you enjoyed! :)
Love, Holly

Whoooosh went the month! :)

Catching up as usual! How can it be mid-October???

First I of course want to post about our amazing trip to Las Vegas! Will and I went there to celebrate our 10th wedding anniversary. We did this with in the wonderful company of our friends Rachael and Paul, and Elisa and Will. The kids were well cared for by Will's parents so we were able to relax and enjoy! We stayed at the Luxor. We spent a LOT of time poolside. We strolled the strip. We saw the Cirque Di Soleil Show LOVE (Beatle's themed) which was incredible!! We love our children, but wow, it was nice to get away and just "be" for a few days!!! Our favorite part of the trip was going to the Little White Wedding Chapel to renew our vows. We were mostly going as a goof. An adventure. But it turned out to be quite romantic, fun and meaningful!














So... now that I've finally posted pics from Vegas, I can start posting about all the fun festive things happening this month!

Love, Holly

I'm back!

Hi!! It's been such a long time. Life has been busy. I just taught 5 Kindermusik classes and can't keep my eyes open.. so a longer post will have to follow this weekend, but just wanted to check in. Will and I had a GREAT vacation in Las Vegas. Lots of pictures to come. We will be headed to Philly, PA next week for Lesnick wedding and we look forward to a quick visit with lots of family! Stay tuned. I'll be back with pictures and updates on the last month. Until then, here's one to tease you with. :)

Off she goes.....

My little girl just left for First Grade!!! I have been pretty calm about it until about right now! After she walked out the door, I definitely became emotional. It's really baffling to me that I just sent my confident daughter out the door. My daughter who is missing a tooth, has another loose one, is reading chapter books by hearself and was wearing a Hannah Montana backpack -- the one she HAD to have! Pacifiers to Hannah Montana... it only goes downhill from here... JUST KIDDING! I'm just SOOO proud of her.


























Have a perfect day all!
Holly

All I want for 1st grade is my two front teeth!!!!

Our little girl lost her first tooth today!!!!!!

Will and I actually got VERY emotional when it happened. We can't believe she is starting first grade this Monday, and just before that, the tooth fell out! Here's a picture....





















We took Anna to her "Meet The Teacher", and we met her new teacher Miss Coleman. Here's a pic!

















Is Anna REALLY turning 7 in October? OH MY GOODNESS!!!!!!

Nick Hotel

We had a GREAT time at the Nick Hotel this past weekend. It was a great way to end the summer and gear up for school. Here are some videos to enjoy! Aiden loved the toddler slide and Anna has become an AMAZING swimmer this summer!!





Here are some pics!

WE WON!!!!!

My program, Grow and Sing Studios is the winner of Nickelodeon's 2008 ParentsConnect. com Parents' Picks Award for "Best Artsy Class for Little Kids in Orlando, FL"! Parents from all over the city picked us as the best.
Check out our listing on ParentsConnect. com/ParentsPicks !

Lot's of happenings!

An entire MONTH has gone by without a post. Honestly, I have no excuse but that I've been doing "other things", and haven't taken the time to spend on this. But, I'm BACK and ready to blog some more, and keep all my loyal readers updated on the happenings around here. :)

Actually, I guess now that I think about it, and look back at my last couple blog posts, it's been since school ended and the kids have been around a lot. Also, my huge summer Kindermusik program is in full swing! There are 150 children in the program this summer.. so needless to say, it's been GREAT but busy busy busy!


Okay, so I want to reverse a bit and continue where I left off. The last I posted, we had gone to Anna's Kindergarten picnic, and then that awesome dog park. Well, Miss Browne (Anna's teacher) invited me to join the class for a bit on the last day of school. I got a huge reception when I walked in the door, and immediately felt sad! I realized how much I was going to miss going to that class each month and doing music with them. They asked me to sit in the reading chair, and presented me with a gift. A frame of pictures with me and the kids. The children signed it as well, and made "fingerprint" musical notes. This gift meant so much to me, and is currently hanging in my foyer.

















I stayed for a while that day, and helped out with their ice cream party and just breathed it in while I could. Being there that day and receiving that gift meant much more to me than most would realize. After my father died, I was raised by a single mom who did the most she could while keeping our little family afloat. I always promised myself that if I could, since my mother couldn't, I would be a strong presense in my children's classrooms and various activities. It all sort of came together for me that day that I accomplished that.

So, we've been keeping busy with lots of activities lately, both child centered and NOT child centered. heehee...

Let's see.. first we went to a Luau party some friends threw. It was lots of fun. Without posting any "inappropriate pictures", here's a bit of that party. We also just went out and celebrate my friend Beth's birthday.. but we'll leave those pictures out of the blog --- for now. :)

Rachael and Me

















Kathy, Kristin, Me and Beth
















We took the kids to a place called Monkey Joes. It's bascially a huge warehouse full of bounce houses. I have to admit, Will and I had just as good a time as the kids! I LOVED going down the huge slide. Anna and I did races down that thing. Good times!





















We went down South to visit Will's parents over the Father's Day weekend. We all went to a really great aquatic facility so there a pic from that, and also a family of ducks paid us a visit as we were leaving to go back to Orlando.
















Will's cousin Bill Schmitthenner was in the Orlando area and came by to see us. We hadn't seen him in years so it was great to visit.
















We took the kids to Epcot recently and had a great day.



















The kids have been doing swim lessons, and actually are getting much better. Anna has turned into a little fish. Aiden, well.. he not too keen on the swim lessons, but he can now swim to the side and pull up -- so we know he could save himself which was the goal this year.





















We have officially had Sagan (our black lab) for a year now. Rachael's brother came into town last week, and of course had to visit him. We got this cute picture despite the fact that Sagan is AFRAID of cameras!!
















and finally... 4th of July! We had a GREAT time at Kathy's house this year. Great food, fun and fireworks!

So that is a month in a post! Wowie! I hope to get better again with the blogging since when I'm doing it, I actually love it. I'm going into week 4 of my 5 week Kindermusik session, and then I'm OFF from teaching for an entire month!! While I'll be busy gearing up for Fall session, I look forward to the time off.

I hope anyone reading this is doing well, and please comment or touch base and say hello!

Love, Holly