A very not so scary day 4!

We have been having so much fun that I forgot to blog about day 4 of Finn's wish.  Since we all felt like all we have been doing is running around since we got here, we decided to slow down on thursday.  Finn was given tickets to Mickey's not so scary Halloween party for later that night and we knew we were gunna be out pretty late so we wanted to have a lazy day. Yesterday was the first sunny day we have had since we got in! So we decided to soak up some rays at the GKTW pool. It's such a nice pool that is very wheelchair friendly with a no entry.  We spent all morning getting some sun then we went back to the villa to have lunch. It gave Finn a chance to take a nap. Now Finn hasn't been napping for months and if he does its like only for a 1/2 hour...but yesterday he went down for 2 hours!  Poor little guy is so tired from all the fun we are having!

We dressed Finn up for Mickey's Halloween party... (he was a pirate) and were off. Now maybe it was all the fun we were having...or how exhausted we are from all the fun...but the adults failed epically last night. Our tickets to Mickey's Halloween party was included in Finn's wish and on our tickets it sounded like we couldn't enter the park until 7 last night or we would have to burn one of our hopper passes if we went any earlier. So we didn't get to the magic kingdom until 7....which is when the party started. Then we try to enter and they tell us our tickets are for Friday nights party instead of tonight's party. DOH! It had the date, October 3 on there, but none of us realized it...and all of us read the tickets and directions.  So there finn is all dressed up and no where to go!

Luckily for us Disney has been so amazing this whole week that they let us in for Thursday nights party...but by the time we got in the parade was about to start...we had a hard time finding a place to stand....on top of all that I forgot Finn's cooler that had his pediasure in it so he could drink something...it was just kind of an unorganized night all around for the Sheets/Hines party. But it was fine. We were able to find a spot to see the parade and had a nice spot to watch the fireworks. We even took Finn to a couple of the trick or treat spots. Finn had a great time. He giggled the whole time the parade was going on and was fascinated by the fireworks. We didn't get home until after midnight so I'm glad we took it easy earlier in the day.

The Wizarding World of Harry Potter

There are so many fun activities planned on any given day at GKTW and yesterday morning was horseback riding! Finn got to ride a horse for the first time yesterday and he really liked it! Look at him all smiley! 

Day 3 took us to Universal Studios,  mainly bc I have had the burning desire to go to Harry Potter world since the day it opened. So yesterday was more for me than for Finn (sorry Finn). Ethan had never been to universal before and I could tell he was enjoying himself. I was really grateful my parents were with us bc they were able to watch Finn while ethan and I rode a few rides.  We didn't spend too much time in Universal since we knew there were a ton of things to do and see at HP.

Diagon alley, Hogwarts,  Hogsmead,  Hogwarts Express, Gringotts did NOT disappoint! It was so amazingly real there. I was tickled pink that I was able to have a butter beer while dining at the Leaky Cauldron! Ethan asked for a coke when we were there and our server replied back in her proper British accent,  "no soda products are served in the Wizarding world" and I just thought that was hilarious. I knew I wanted to ride all the Harry potter rides but felt guilty leaving finn while my parents watched him. I knew they would love to see the inside of these amazing structures (like Gringotts and Hogwarts) I got a tip from one of the GKTW volunteers that told me to flash them our pass and GKTW button and tell them you want a tour of the ride. So we did that for both the Gringotts and Hogwarts rides and it was awesome. We got to bypass the line and take our time walking thru the buildings.  My parents were able to see inside these awesome places and then right when we were boarding the ride, my parents would take finn out the exit and then ethan and I would ride.  It was just so amazing how authentic everything was! But I must say the whole time I was there I kept wishing Betsy and Brian were with us. Being that they are huge HP fans I know they would have loved it!

The one thing Universal Studios taught Ethan and I was that we are getting old. We only rode a handful of rides and we are both hurting today. I rode a roller coaster yesterday for the first time in about 8 years. My neck has a little kink in it today. As much as I thought the Hogwarts ride was awesome...it made me a little nauseous.  I found myself wishing the ride would end! I never used to be like that! :( at least I can say I did it, it was fun, now let's go back to the kiddie rides that Finn can ride! My body handles those better!

Disney day 2!

Today was a fun, soggy, tiring day. We got up and ate breakfast at the Gingerbread house. We ran into an old coworker of ethan's who is here with his family for his daughter.  She is also a fellow spastic quad cp. How amazing is it that we are both here, getting a wish for our kids, at the same time?! It really is a small world! I had to get a picture of Finn and Lucy.  Then after riding the carousel we were off to Epcot. Epcot is more on the adult side, but I was the only one who had been there and I really thought ethan and my parents would enjoy it. Plus there were a few rides that Finn could ride. It rained off and on the whole day so every picture we took we all look like drown rats! We were tired from walking around all day but that didn't stop ethan and I from taking Finn swimming at the adaptive pool here at GKTW after we got back.  It rained the whole time we were splashing around the pool but we didn't care. Finn was having a blast!

I love being here at the GKTW village. Like my mom says, it feels like a big hug. I can't tell you how amazing it feels to be around loving and caring strangers.  To not have people stop and stare at your child in a wheelchair, say ignorant comments, or ignore you completely. Everyone here accepts Finn as he is and aren't afraid to walk up, introduce themselves, and talk to Finn. This is the kind of community that I want to live in. And it kind of breaks my heart a little to know that after this week is over we can never come back.

Disney day 1

Oh my gosh! We are having such an amazing time down here. I felt the need to blog about it so u can recall every amazing detail...plus I know a few people are interested in hearing all about Finn's wish. Finn did awesome on the plane.  He is such a well behaved boy! We arrived early Sunday morning, but we were all so exhausted from the early travel that we just napped and were kind of lazy. Ethan and I had to go to an orientation at Give Kids The World to get all of Finn's swag. They provide 3 day hopper passes to Disney with a special fast pass as well as 2 day Universal pass with a fast pass as well. Not to mention permission to use the VIP lounges at both parks, a picture card so we get all unlimited professional pictures taken of us at the park, a pin Finn needs to wear at all times so he gets treated like royalty...those are just the park perks. They have so many fun activities planned for all the kids that get to stay at GKTW. This is the most wonderful place filled with the nicest people you have ever met.

Day 1. I made everyone get up early bc according to our GKTW itinerary a bunch of disney characters will be at the village taking pictures and signing autographs!
Finn got to meet Mary Poppins, Mickey, Pluto, and Goofy! It was awesome to meet the characters at the village bc they took time to really interact with Finn. Finn was always trying to grab their noses! They took as many pictures as you wanted with them and there were like no lines to meet them!

After that we headed to magic kingdom where we were treated like royalty. No waiting in line for this party! We got to walk on every single ride we went on! And we rode a lot, surprisingly,  I was a little worried finn wouldn't be able to ride much. But he was and he enjoyed it so much. His favorite ride so far has been it's a small world...which is surprising bc everyone hates that ride. Haha. It's great to see finn have a great time, but one of my favorite things is seeing ethan have such a great time. He has never been to Disney before and never really had a desire to go, but you can't help but get sucked in to the magic here! Ethan's 12 year old self has been coming out to play and I am really enjoying seeing him have a great time!! Actually that goes for all of us! I think my mom got star struck when she met Mary Poppins!  I feel like we have already done so much and we just got here!!

Switches, the kindness of strangers, and Disney!

I want to start this entry by saying how amazingly kind people are in general to Finn and our family. I started this blog with its sole purpose to be an outlet for me to get a lot of things/feelings off my chest, to be a therapy tool to help me cope with this situation we are in. But the longer I do this I am realizing that this is a great way to keep people updated in how Finn is doing, what challenges we are facing, what he has accomplished, and the struggles I face as a mother to a special needs child. My target audience was of course family members who live far away from us, but I am finding out that way more people keep tabs on Finn than I realize. I have gotten such amazing feedback from people I haven't talk to since high school, friends of family members, and even strangers who have reached out to offer advice, words of comfort, and even gifts for Finn. Most recently Finn received this in the mail from someone I have never met.

I feel very lucky to have people in this world who are in Finn's corner and rooting for him and thinking of him. So from the bottom of my heart I thank each and every one of you.

Finn has started preschool in August and since then our schedule as been pretty busy.

 

 He goes to school 4 days a week on top of going to therapy 3 times a week. So he is always doing something. Our latest thing is getting Finn to communicate through the use of switches. It is amazing how awesome this technology is. He is learning how to find his voice and tell us what he wants and needs. Unfortunately, he is only able to use this technology once a week. I am hoping to get one funded so we can have one to use at home b/c he does awesome! We were at speech therapy this morning and just look how awesome he does with this technology! The first video is early in the session, and he hadn't had speech for 2 weeks so he was a little rusty, but the other videos posted are later that same session and he is speedy with his switches!

He does that well with only using this once a week!! Can you imagine how expressive and talkative he will be when he has one of these full time!? God, he makes me so proud!

Our family leaves for Disney in less than a week. We are really looking forward to our vacation. I know Finn will have such a great time, and I am sure I will be taking like 1,000 pictures that I will be sure to share once we get back!

BIG EXCITING NEWS!!

Finn has been so busy this summer..between all of his therapies, school, and play dates, and traveling...I haven't been able to update and fill everyone in on the EXCITING NEWS!!!

Finn has been granted a WISH through a fabulous foundation called Wishes Can Happen. They are sending us on an all expense paid trip to Disneyworld!!! Included in this wish are passes to ALL of the Disney parks and Universal Studios. We will be staying in this amazing village called Give Kids the World. It is apparently pretty awesome, and is equipped for all adaptive equipment. Ethan and I are so excited and so grateful for this opportunity. I have been saying for the past year that I want to take Finn to Disney because I hear that they are very good with special needs kids, but there would be no way Ethan and I could afford to take Finn anytime soon, so to be given this chance is just amazing and we can not wait! We are going at the end of September/early October.


Finn has been seeing a lot of specialists lately...We just saw Neurology bc I had a suspicion that Finn was having seizures again. The feeding clinic put Finn on an antihistamine to make him hungry, which will make him eat more and hopefully put on some weight. He was on this drug for a month, and it was working...Finn became a little piggy and he actually gained over a pound in 3 weeks. It was great....but then I started noticing Finn do some weird things.  He would do something weird with his eyes...every instance was quick but I knew something was not right. The feeding clinic told me there was a small chance that this antihistamine could affect the topamax, but not likely. Well leave it to Finn to prove everyone wrong. I pulled the drug and kept an eye on him.  Seizures are so hard to spot bc they can manifest in so many different ways. Finn had infantile spasms which are easy for me to spot, and I am happy to say that he did not have any of those...but he would just kind of zone out for a few seconds. I couldn't bring him back to me no matter what I did. Then he would come back and act like nothing happened. These episodes could not be predicted, they did not happen every day, they didn't come in a cluster, and they only lasted maybe 15-30 seconds. So Neurology decided to up his topamax. So far so good...

Finn has always been a terrible sleeper. Ever since he has been born, sleep has been such a struggle for him/us. All the experts kept telling me 'you just need to give him more time...he'll get the hang out it' 'you are babying him...you need to be more disciplined' blah blah blah. I am exhausted...Finn is exhausted. Its been three years and I can't take it anymore! So when we were at Neurology, I discussed with his doctor that sleep is not getting better...it is actually getting worse! Finn has terrible muscle spasms/startles that wake him up! His Doc said 'well let me talk to a colleague of mine and I will call you in a few days to see what he suggests' and I told her I was not leaving the office until she wrote him a script for something to help him sleep. We can not keep going on like this! Finn needs sleep!! It's not healthy for a child to keep waking up in the middle of the night...never getting the healthy REM sleep that we all require!! So his Doc leaves the room, asks a colleague of hers that is a neurologist who specializes in body movement and sleep...which is right up Finn's ally...why haven't we ever seen this doc before!?!? So they come to talk to me about putting Finn on a small dose of Baclofen. I immediately have serious doubts...Baclofen is a medicine that helps kiddos who have high tone issues, like Finn, however the reason why Finn cannot be on this med is because it can cause seizures....and since he has a history of seizures Ethan and I, and the doctors, decided that Botox would be a great option for all of Finn's tone issues....So when I hear these docs wanna put him on Baclofen to help with sleep I have serious concerns. Their plan was to put Finn on .5ml only at night. That is like such a super small dose. It will hopefully be a small enough dose to not affect his seizure medications, but large enough to help calm his muscles when he sleeps. When the doc sees how hesitant I am about this plan she looks at me and says 'you need to try something. Lack of sleep can cause seizures, and this is such a small dose of Baclofen that the risk is minimal, plus we upped his Topamax.'  So I went ahead and agreed to try this med. He has been on it for about 2 weeks now and his sleep has improved. He is not having his twitches/startles when he sleeps anymore. He has been doing like 5 hour stretches in his bed by himself, which is amazing! So far this is working, and I hope everything keeps going well!!

Dealing with the school district....

Finn is rapidly approaching 3 years old! I can't believe my baby is growing up so fast...I still see him like this:

But Really he looks like this now!

Finn turning 3 is bittersweet because once he turns 3 he will age out of the Help Me Grow program he has been in since he was 4 months. The team of professionals following his progress, helping me with any and all questions I have about therapy, funding, education, adaptive equipment, doctors...will be gone. Of course Finn will be going to another program, Franklin County Board of MRDD, but I feel like we have to start over again. On top of all this change, Finn is now old enough to go to preschool which means now the school district get involved with Finn. I have always been nervous about meeting with the school district, bc I don't know if they are capable of meeting all of Finn's needs. After meeting with our school district TWICE, I am confident that they are DEFINITELY not the school I want Finn to go to. At our initial meeting, the school psychologist came to our home, sat down at our kitchen table with me, Finn, and our service coordinator, and did not even acknowledge that Finn was at the table with us. She didn't look at him, talk to him...nothing. As his parent and advocate, I am extremely conscious of how people interact with Finn, especially professionals having meetings with me about Finn. If someone acts like Finn is invisible, I am pissed. Especially a school psychologist! Who's job is to go to the special needs children homes and start the paperwork to complete their IEP! This woman never reviewed anything about our case. She didn't know are history or anything...even though she had all the paper work in front of her. I was immediately turned off. Then when I told her that Finn has vision issues, she didn't know how to go about getting a vision specialist in to see Finn to do an assessment on him that will help write his IEP.  So obviously this school has no experience with kids who have low vision.  After that disastrous meeting, I cried to my service coordinator. This first impression of this school district was terrible, my confidence in them was shot. Luckily she talked me off the ledge, gave me some great advice on how to handle the next coming weeks when the school will do their assessment on Finn, and then his initial IEP meeting. 

Last week Finn had his assessment with the school district, and I wish I could say that it went better. I tried going in with an open mind. That day Finn met with a school psychologist (a different one that came to our house) a PT, OT, and a speech therapist. The PT was very nice. She was great with Finn. The OT was pretty good too...the speech therapist however, was ignorant. The PT and OT were on the ground playing with Finn, seeing what his gross and fine motor skills were and asking me questions about how he is at home. The speech therapist asked me a few questions trying to determine how Finn communicates with us. While I am on the floor talking to the PT, I overhear the speech therapist say to an assistant that is in the room with us,  "I can't ask any of my questions bc he can't really do anything".  I couldn't believe my ears. This ignorant professional said this within shouting distance of me and my kid. The mama bear in me wanted to go over and choke her. But I kind of just laughed to myself and thought 'over my dead body will Finn ever attend this school'.  For the record, I have been asked those standard communication questions a 100 times by different professionals and they all have been able to adapt the questions to fit Finn's skills. For what Finn has to work with, he is very perceptive, and understands a lot of what Ethan and I say to him. And for someone who doesn't know him and just assumes that Finn can't communicate his wants or needs to people is just ignorant. and it's obvious that these professionals do not have the experience with someone with Finn's condition. So he will be going somewhere else. We have our final meeting with the school in 2 weeks. and I plan on telling them that I think they were unprofessional and left a terrible impression on us. 

For now Finn will continue to go to the school he is at right now. He loves it there, I love it there, and the teachers, therapists, administration staff, everybody is incredibly nice and they have the experience and knowledge of special needs children. Finn can stay there until he is 6 so we have time to figure out where he will go from there.