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