Powerless

I hate feeling powerless. I hate when things are beyond my control. I never considered myself a control freak until I had Finn.

I always thought that if I followed all the instructions...did all the therapies...put my heart, soul, and energy into doing all of those things everything would get better. Not that Finn would suddenly stop having spastic quad cp....but that it would make a big enough difference that people would notice.

I always feel so defeated after our doctors appts. Finn and I try so hard and all I hear is "he still isn't gaining enough weight for us" "he is still really tight after his latest botox injection" "his head control doesn't look that good" "you have to think about what meds he might need in addition to botox"

I go in feeling good. I see changes in Finn...they might not be noticeable to everyone but I see it. And then to be told all of these things that aren't improving frustrates me. I feel powerless...

The future scares the shit out of me. I try not to think about it for too long bc I always end up in tears and having panic attacks bc of how terrified I am. I worry all the time. Then to be told today that he is still tight after botox and might need additional drugs to help with tone. It scared me. Finn is only 3.5 years old...he's only been on botox for a 1.5 years. I thought it would be years and years before we would be having this discussion since there is only so much botox a person can get....but you want to talk about this now?? I immediately think about the future and what this means for Finn down the road.. 

And I don't know the answer and it scares me....again...powerless.

CP Clinic

2 Weeks ago Finn had his first appointment at the CP Clinic here in Columbus. It was a 4 hour doctors appointment. In that time every specialist you could think of came in to evaluate Finn to see how he is growing and developing. Now, I have some experience with this because when Finn first went to his Complex Care appointment, as well as feeding clinic, we had multiple meetings with a handful of specialists at one time and it was all very repetitive and exhausting. But this was the clinic I actually had to fight for Finn to get in to....which is weird because he has CP! It took me close to 2 years to get Finn into this clinic... I wanted him and needed him to get into this clinic bc of the types of specialists that will be seeing him and evaluating him. First we saw the OT and PT. They came into the room and stretched and flipped him in different positions to determine his range of motion. We are very lucky that Finn has great range of motion, and what that basically means is all of Finn's limps can be stretched in ways that the typical person can move. With Finn's high tone and spacticity this could be a problem later down the road, but right now we are still doing good. They recommend that Finn wear a resting hand splint on his right hand b/c his wrist has developed wrong. Hopefully if we can get him this splint it will prevent it from getting any worse.

Next Finn got his hips x-rayed. The Physical Medicine doctor came into the room to tell us that Finn's left hip is slightly out of place. She didn't seem too concerned by it at this point in time, but said we will just have to keep an eye on it. This is why doing Finn's stretches a couple of times a day are so important. When I stretch Finn's hip out the left hip does eventually sit properly, but it could easily get worse if I decide to neglect his daily stretches...which I would never do.

Next we saw a pediatrician who specializes in seeing kids with special needs. I have heard wonderful things about him from my CP mommy friends, so I was really excited to meet him. The first thing he says to me is that he looked at Finn's MRI before he came into the room and that Finn's MRI is "pretty incredible....and not in a good way". He goes on to say that when you see an MRI that has the extent of brain damage that Finn's does, you expect the kid to look/act a certain way, but Finn doesn't. And that's a great thing. He is better than what he "should" be. Just another example of how much of a fighter this little boy is. So the doc, of course, wants me to relive my pregnancy and birth story which is always still incredibly hard for me to talk about. I am in tears and asking this doctor why this happened....why me? why Finn? No one can give me an answer or pinpoint what exactly happened. Then he asks if I saved my placenta. I kind of laugh off that question...no. of course not...why? And he suggests that perhaps a blood clot formed in the placenta, which could explain why blood did not get to certain parts of Finn's brain and why I suffered from hypertension, then it dissolved on its own. Unfortunately there is no way to find out if this is the case since I didn't save the placenta. I currently have 2 doctors reviewing all of mine and Finn's medical records trying to figure out what happened during my pregnancy. This was the first time I had anyone suggest to me that it could have been a blood clot in the placenta. Strange. We got a referral to genealogy to see if they can offer any further explanation. We will probably never know for sure....and every doctor tells me that the odds of this ever happening again is extremely minimal, but that doesn't stop me from being extremely gun shy about ever becoming pregnant again.

Next we saw a speech therapist. This is the one therapy that I don't feel like a complete failure at. This is the therapy that Finn thrives at. OT and PT are harder for him because his body doesn't cooperate as easily as he/we would like, but with speech, it is all cognitive and you can see Finn learning right before your very eyes. The speech therapist would hold out 2 different objects in her hands and ask Finn to point to a specific one. And he was able to answer correctly all the 3 different times she asked him. My heart swelled with pride.

That's the one thing I wish people knew about Cerebral Palsy. Just because a person's body doesn't function "typically" doesn't mean that their mind is broken. A lot of times people see Finn and just assume he can't understand anything that is said to him.  So many times I have had people talk over Finn or completely ignore him all together because they just assume that he can't understand. Finn might not be able to control his body like me and you, but he understands a HUGE amount that is said to him.

Back to reality

Vacation was great. Everyone had so much fun. We made some once in a lifetime memories. Took amazing pictures.  It was the best. But now it's back to reality.  And boy did I have a nice shock back to reality.

Earlier this week, I had a meeting with Finn's new service coordinator. Finn has aged out of the Help Me Grow program and now the Franklin County Board will look after him. With this meeting we basically just discussed where Finn was on the wait list for the waiver program that Ohio offers. There are 2 different levels of waivers...the level 1 waiver gives families up to $5,000 a year to help assist their kids who have a diagnosis. That money can be used for anything that the child needs: adaptive equipment,  adapting your house/car, nursing assistance....Finn is currently 3300 on the wait list and he has been on it since he was 6 months old. The next level waiver is called the IO waiver. This is the big one. The amount of money you get a year depends on how much care the child needs/requires. It can assist families up to $500,000 a year. This waiver is great bc it stays with the person their whole life while they live in the state. Although the drawback is you can't get this level of waiver unless someone dies or moves out of state. Finn is currently 5300 on the wait list for that one.

I was asking the service coordinator what I can use the money for...and she mentions the things I listed above...and I say "well I won't really need to hire nurses for finn". In my mind I'm thinking finn is fine. He's not bedridden,  not hooked up to machines...so why would I need a nurse?  And she responds, "well he's just going to get bigger. When he's 16 years old you will need help lifting him and stuff." And that just kind of shocked me. Like it didn't even occur to me that Finn will get bigger. I mean I hope he continues to grow and get bigger, but I never pictured him as a teenager,  an adult.  Maybe it's bc the past 3 years of my life has not changed...I still change diapers, I still get up in the middle of the night, every night, I still bottle feed and spoon feed, Finn is still immobile. Sometimes I forget that he's 3.5 years old. Some days I think I live in denial...this is just a phase ...that he'll wake up one day and just start walking and talking. Then for me to have to think 10 years into the future and face that our routine may never change is hard.

Now don't get me wrong. I am so in love with Finn. He is my favorite person on the planet. He is the sweetest little boy I know. And he is making great strides in physical and cognitive areas. He amazes me every day. He is the strongest person I know...way stronger than I will ever be.

So it was kind of jarring to have that meeting. Then a few days later I am at Finn's OT appt...discussing what I said earlier.  And she says, "you can use the nurses to be professional babysitters" (since I could never just hire the neighborhood babysitter) "let's say you have more children and you guys want to go to their dance recital or something and don't want to take finn. They would be the ones who could stay at home with him." Wait--what??? Why on earth would I ever want to exclude Finn from a family night? Omg. Just thinking of even considering that puts another crack in my already broken heart. I have accepted the fact that finn will go thru periods of feeling left out at school but I'll be damned if he ever feels that way at home. Not if I can help it.

This was an emotional week for me. Vacation is definitely over.

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!!