Wait--you're telling me it's NOT normal to spend 6 hours a day feeding your kid??

Finn is the busiest child. Ever since school started we do not get a day off until the weekends. Poor guy has to work 5 days a week just like an adult. School is going well for Finn. He knows the days he has school because he ends up waking up at like 5am. It's like he is so excited to go. Non school days he sleeps in until 7. He has a little girlfriend in his class. She stays next to him a lot of the day and gives him hugs. It is one of the sweetest things I have ever seen. She is one of the developmentally 'on track' kids in his class, which makes my heart swell up even bigger. Ahh young love...

Finn has been in speech therapy for a couple of months now. Progress is real slow. His therapist noticed that sometimes Finn coughs when he is eating so she told us we needed to have a video swallow study done. Her concern was that when Finn swallows some food may be going into his lungs instead of his stomach which is a reason why he could be coughing. If we find out this is the cause for the coughing then he would more than likely need a feeding tube. CRAP. Well luckily, I know my kid more than anyone and I told her that he does not normally cough often during feeding time...but she still insisted in a swallow study....So we had that procedure done in the beginning of October. All it involved was him swallowing barium in applesauce and in a bottle while the OT's watched the food go down his throat on the x-ray machine. GOOD NEWS! Finn's food is going exactly where it should be going. He is not aspirating when he eats. Ok awesome...at least I don't have to worry about a feeding tube! Before we left the swallow study, the experts told me that they are referring Finn to the feeding clinic in Dublin. They said because of Finn's 'poor motor development and poor weight gain' that they think he would benefit from seeing them.

Usually it takes months to get into the feeding clinic, but Finn got in 3 weeks after our swallow study. We just had our appointment last week. Finn and I met with a team of experts on how to get Finn's weight up. The experts on the team consist of a pediatrician, a nutritionist, psychologist, and an occupational therapist. Finn has weighed 23lbs for the last year. He is hasn't been on the weight charts for months. So their main goal is to get Finn on the charts, in addition to improving his motor skills, and shortening the length it takes me to feed him. Every time I feed Finn it takes me an hour. No matter what he is eating, what time of day it is, how hungry he is...it always takes me a hour to feed him! It is ridiculous. And it is not because he is crying or fussing...he just loves to talk and kick and dance while also trying to eat. The team said that some kids just don't enjoy eating...something I can not relate to. Anyway, they gave me some advice on how to shorten the length of meal times, things I can add to his meals to add extra calories (butter, gravy, peanut butter..) and then they tell me they want Finn to start drinking Pediasure....but not the Pediasure I can buy in stores...no no...they want me to buy Pediasure 1.5 that can only be ordered online...I got flashbacks to when we had to order Elecare for him. Pediasure 1.5 isn't as expensive as Elecare, but it would cost us $150 a month. That is a lot of money...Ethan and I racked up so much debt on our credit card when we had to pay for Elecare...now they are telling us we have to go back to spending that much money on just a drink for Finn? They are working with BCMH in hopes to get the Pediasure covered, but they didn't cover Elecare so I don't have high hopes that they will cover the cost of Pediasure. It makes me so angry that Abbott can charge this much for food. It really should be a crime. They also started Finn on an antihistamine in hopes it will make him hungry. Then they told me they want me to contact his neurologist and get his seizure medication changed. They think the Topamax could affect they way food tastes. I am very uncomfortable changing his seizure medication. Finn has always had eating issues and I have not noticed his eating habits change since he has been on the topamax. If it's not broke, don't fix it...and I really don't want to go switching medications if we don't really need to. In the end they want to see Finn back for a weight check in 8 weeks. We are going to try all these things in hopes of getting Finn to gain weight...if that doesn't work then they told me that a feeding tube might be in his future. CRAP. Not this discussion again...well hopefully the Pediasure works. I am crossing all my fingers and toes...

Then today we had an eye doctor appointment. Finn has a lot of specialists that he sees on a regular basis, but going to the eye doctor always scares me. I am gun shy..I never know what he is going to tell us. Today's visit wasn't too bad. We've had worse. Finn's eyes have not changed. But his doctor wants him to go see a Low Vision Specialist. This person will tell us what kind of school Finn should be in, if he needs magnifiers, special lighting..stuff like that. His doc said that Finn should probably not be in a mainstreamed school. He mentioned that it is a possibility that Finn will need to go to the Columbus School for the Blind. My heartbroke. Maybe I am just being naive, but that thought never even occurred to me. My poor baby. But it's a good thing we are talking about all this now, since Ethan and I are planning on buying a house this Spring, it would be nice to know where Finn should end up when it comes to going to school. We will know more after we see this specialist, which I guess is kind of a long wait.

That is pretty much everything that has been going on in the world of Finn the past couple of months. Needless to say, he keeps me busy...

A week full of firsts

Finn started school last Monday and I am so impressed with how well he did! The first day I decided to stay for a little while just to observe Finn, the other kids, and the teachers. I ended up staying for only the first hour. Finn didn't even seem to care that I was there. He was playing with the computer and other kids that I decided I was more in the way then anything else. So I left. I got a few hours to myself which was great, but the whole time I was thinking of Finn. Wondering how he was doing, were the teachers able to get him to eat snack...all these things that a typical obsessive parent would think. So I go back to the school a 1/2 hour early to pick him up and find him outside playing with tonka trucks with a few other kids. That sight made me so happy. He was fine. He was socializing with kids, and he was playing. So I just stayed back, kept silent until it was time to take him home.

The second day was pretty much the same as the first. I dropped him off, but decided to stay for a little bit just to help him get acclimated again. We sit on the floor and play with a toy when another little boy comes up to us. He has brought Finn a toy that he hands to me. He tries to get Finn to press the buttons that open doors that reveals sesame street characters...however, Finn is having trouble pushing the buttons. This little boy sees this and he decides he's going to help Finn push the buttons. He grabs Finn's hand and helps him. It was one of the sweetest things I have ever witnessed. I left shortly after that and couldn't help but cry on the way home. It made me so happy to see a kid Finn's age helping him. If Finn has a least 1 of those kind of sweet, caring kids in his class for the rest of his life, then he is going to be fine when it comes to school.

 

Finn also had his first dentist appt this week. Only good news to report. They said his teeth look pretty good, no cavities and just to keep brushing the way that I have been. I will have to start flossing his bottom teeth bc of how crooked they are, but no big deal. I can handle that. I was so surprised how well he did during the exam. He didn't fuss at all. Was just such a good boy opening his mouth for them to brush, floss, and scrape his teeth. So of course I had to take some pictures.

 

Finn has a locker at school and look at the picture they put on it! He looks like a grumpy old man! So funny!

 

Botox...it never gets easier...

Yesterday was a tough day for me. Finn has not been sleeping for the past 2 nights, and everyone in my house is completely exhausted.  I knew yesterday was going to be hard, but on top of the exhaustion it made it just that much worse.

Botox appointments are never easy. Wednesdays are Botox days at Children's Hospital and usually there are only like 1 or 2 people in the waiting room when Finn waits for his appointment. Yesterday it was crowded. Everyone was there waiting for their Botox injections. And these were kids who were about 10-12 years older than Finn, and very effected by CP. It hurt my heart. I almost started to cry right there in the waiting room. Luckily they took us back to our room as soon as I finished signing in. I was able to hold back the tears until we were alone in our room. I cried for many reasons...First, I was afraid that the kids I saw in the waiting room was a glimpse of Finn's future. A life bound to a wheelchair and not able to do much else. Second, I cried for Finn. How unfair this all was for him. He didn't ask for this. He deserves so much better. Like I in some way failed him...I couldn't even protect him when he was inside my womb. Third, going along with the second reason, I was questioning putting Finn through the Botox injections every 3 months. It's excruciating to watch. 8 shots he has to get in his body...in muscles that I am sure are already sore from the increased tone. And he can't even tell me if he wants to go through this. He has absolutely no say.

Between wiping away my tears I look over and glance at Finn. He is laying on the table smiling and kicking. I lean in closer to kiss him. He kisses me back and then touches my face. Almost like he is trying to wipe away my tears and tell me that he's ok. Then I came to my senses. Finn's CP is not as severe as the kids in the waiting room. Finn is extremely interactive, he talks back to you if you talk to him. He won't be bound to a wheel chair because he knows how to stand, and he is improving with walking every day.  He is amazing. He works hard every day and it shows. And while Finn has been dealt a hard situation...it could be SO much worse. He could be unresponsive and not be able to move any of his limbs. But he's not and he can.  And I am very grateful for that.

The shots were not any easier. I know deep down that this is what is best for him. He is able to do so much more when his muscles are loose. So I will continue to do the Botox shots every 3 months. Finn is so brave. He didn't really mind the first shot...it was the second one that really made him mad and the third one that made him cry. I was able to hold it together until shot 7. Finn was screaming and crying in pain and so was I. He recovers beautifully though. As soon as it was over I was able to hold him in my arms, he was fine. I, however, was still crying. I think the lack of sleep made me extra emotional, but Botox will never get easier to watch.

Summer of Finn

My little family has been so busy this summer. I haven't really had any time to update this because of all the fun we have been having. Finn has been keeping busy by having therapy 3 times a week and then spending his weekends at the lake. No body loves the water more than this guy

Finn turned 2 on June 1. I can't believe it's been 2 years since this sweet, lovable person has come into my life. He is my world. I am so proud of what he has accomplished in the past year, and it makes me excited to see what this year has in store for him. He has made some huge progress in just the last couple of months. The biggest one is taking 8 consecutive steps in his walker with his braces on. That is huge! He loves standing and walking. I am confident that he will be running around before I know it.

 

We took Finn to the Ohio State Fair a few weeks ago. He had a good time, but it is kind of disheartening that he can not ride any of the rides. I know he would love spinning around and feeling the wind in his hair, but he is just not there yet. Hopefully someday he will be able to experience carnival rides. But this summer he got to experience carnival food...which HE. LOVED.  Here is a video of Finn trying cotton candy for the first time. It's priceless.

 We found out that Finn was accepted into school. He will start in September and go Mon, Wed, and Fri 8:30-11:30. I am so excited for him and for me. He will finally get some social interaction with other kids his age. However, he will be the only kid in his classroom that will need adaptive equipment. I was kind of sad to hear that. I don't want Finn to ever feel different and this setting is kind of singling him out...I understand why they do it though. It is a lot of work for the teachers and aids. His classroom with be a mix of kids who have special needs and kids who are on track developmentally. He will also get OT, PT, and Speech when he is there. He will also continue with private therapy 3 times a week. So come September Finn and I will be busy busy busy.

And now I have something very special to share. My beautiful and sweet cousin, Amy is making a movie project about kids who have special needs. We were very honored to be a part of it. She is making this for her girl scout troop and it will be shown to other kids. She just sent me a teaser of the movie, and it looks so good! I got permission to share it here...

Speak Through the Silence

Eye doctor update

Finn had an eye doc appointment today. I always get a little nervous for these visits, because I never know how they are going to go. It usually involves the doc telling me just how bad Finn's vision is...and no mother wants to hear that. To recap last time we were at the eye doc he said that Finn was probably concidered legally blind and that was best case senario. We know he can see light, but he wasn't sure if he could see anything else. The doc also said that based on what he observed that Finn's right eye was the dominant eye and that his left eye probably didnt see much of anything....

TODAY after the doc examined him he said, with a huge grin on his face, 'He can see. And not just light'. I was pretty confident in that already, but I always liked to be reassured by a doctor. He also confirmed that Finn can see out of BOTH eyes. Finn's eyesight has improved since the last time he saw him 6 months ago. The doc can't explain why this happened...it just did. Don't get me wrong...Finn's eye sight is still pretty bad...he is still saying that Finn is considered legally blind, but not as bad as what he thought 6 months ago. I am still over the moon by the news. Just another reason why Finn is a medical marvel! He is just so amazing!

Baby steps for you, but big leaps for us

In the last few months I have noticed big changes in Finn. He really is growing up. For 23 months I have basically had an infant. Finn still drinks from a bottle that I need to feed to him, his sleep is still erratic, he is not mobile...so when I see changes in him I get so hopeful and happy that I feel like my heart could burst through my chest. Here are some of the new changes for us:

Car seat- This has always been a fight with us. Finn hated the car seat ever since he was alive...he would just scream bloody murder until you took him out. But in the last few weeks something has changed. Finn does not hate the car seat anymore. He just one day stopped crying in the car. He can even make it to my parent's house 2 hours away and not cry anymore. He will even fall asleep some times! This is HUGE progress for us. It was always a nightmare to go anywhere and now it's no big deal.

Stroller- This kinda went hand in hand with the car seat. But now he loves his stroller. He especially loves being outside. It is like is favorite thing to have the sun on his face and the wind in his hair. This is progress because now I can take him for long walks and he doesn't mind it...he will even fall asleep in the stroller.

Milk/Soy allergy- GONE!! Finn can finally have dairy!!! This was HUGE news for us. The formula that Finn was on was SO EXPENSIVE! But he is now officially off the formula and is drinking whole milk and he really likes it...especially when I add chocolate :)

Trunk control - Finn has strengthened his trunk control so much in the last couple of weeks. He only needs a little support when he sits on the floor AND his control helps him to be able to do this:

Standing on his own! Granted he can not pull himself up into this position, but he does not need his walker to stand anymore. He can keep his head up and maintain balance for a good few minutes. It's pretty great to see.

 

Finn has also added a new consonant sound to his babbling...L's. I swear he has said the word 'love' a couple of times, but every time I try to record him, he stops.

 

These changes might seem small to some, but they are beacons of hope for us. Finn continues to grow, learn, and change. And as long as he keeps doing this then I believe there is nothing this amazing kid can't do.  



Sleep Study Results

We got the results of Finn's sleep study and it was not what I was hoping to hear. They said that all of Finn's oxygen and CO2 levels were normal, even though he snored 90% of the night it is nothing that concerns them. Well this upset me a little bit because 3-4 nights a week Finn wakes himself up by gasping for air or his snoring is so loud that it wakes him up. I still think he has sleep apnea, but he did not do this during the sleep study. So they will not treat him for sleep apnea. They did however think his startles/twitches were the reason why Finn does not sleep well... (which I agree) so they wanted me to try giving him iron supplements. Apparently this is how they treat restless leg syndrome and they think that is what Finn has...even though I know he doesn't. So I have been giving him iron for the past 3 weeks and nothing has changed in his sleep patterns...so we can scratch that off the list of reasons why Finn does not sleep. After dealing with this issue for 23 months I have some theories on why Finn does not sleep. 

1.) Kids with neurological issues usually don't sleep well...maybe I will be dealing with this issue for the rest of my life...God I hope not
2.) Finn still can not roll himself over...whether it be from back to tummy or tummy to back. So when he wakes up after being a sleep for a few hours he wants to change position and can't get there by himself.
3.) I think his crib mattress is too hard for him. Finn has spastic CP which means he has really tight muscles and I do not think that a firm mattress feels good on his little body. Also he does really good in our bed which is a feather top mattress.


Even though Finn still is not the best at sleeping, I must say he has gotten so much better. He no longer gets up in the middle of the night to eat, which is great. Slowly but surely I think Finn will get there.