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)