Growing up Finny

It's been awhile since I've had a chance to update, but I hope everyone had a lovely holiday. Finn had a great Christmas this year. This was the first Christmas that I felt Finn was really aware of what was going on. He looked at the presents that were in front of him, and he showed true excitement when he got to play with his new toys. This video is one of my favorites. You can see just how happy and excited he is for Christmas morning!

There have been some BIG changes we've noticed in Finn the last month. It's like all of a sudden things are clicking and falling into place. He has been making progress in PT. I have noticed his trunk getting stronger which helps his independent sitting. The other day he was able to sit by himself for 10 whole seconds and he did this multiple times during that therapy session. He has taken 3 consecutive steps in his walker completely on his own while wearing his leg braces. I always knew Finn could do these motor skills as long as we kept practicing. In my mind there is nothing Finn can't do when it comes to motor skills...it just might take him a little longer to figure out how to move his body. Speech therapy/feeding therapy is where I always feel deflated. Finn has been in this feeding plateau for so long and I don't see light at the end of this tunnel. I try to do everything the professionals tell me to do, but I haven't really seen any changes in Finn's feeding...that is until last week. Finn has finally learned a new oral motor skill! He has figured out how to move his tongue from side to side in his mouth (depending on where the food is placed). His tongue has never been able to do anything else besides thrusting it in and out of his mouth. That is one of the reasons why feeding can be so frustrating. But seeing Finn do something new is always exciting to me. It just proves that information is getting to his brain...it's just taking a little longer to process it.

The biggest change we have seen in Finn in the last month is his sleep. All of a sudden he just started sleeping through the night...on his own...in his bed. It's been amazing! The first night he did it I woke up in the middle of the night in a state of panic b/c I thought something was wrong with him. He never slept this long without wanting to be in bed with Ethan and I. I go to his room, check to make sure he's breathing...sure enough he was fine. I thought it was a fluke...but he did it again the next night. I finally feel refreshed in the mornings! Granted he still has some nights where he comes in our bed. Like the other night Finn woke up in tears b/c of a nightmare (I'm guess it was a nightmare anyway) so he slept with us. Some nights he will sleep from 10-8....the next night he will sleep from 9:30-3 then come to our bed until we need to wake up. Last night we had a night where he slept all night in our bed. You never know just how long he will stay down but he's at least giving us 5 hour stretches. It makes me so happy. Again, it's like something just clicked in him and now sleep has improved by a million percent!

I have always believed that Finn understands WAY more then we think. Sometimes I don't think people give Finn enough credit or they underestimate him. Sure he can't talk, but that doesn't mean he can't express his needs/wants. It must be incredibly frustrating to understand what is being said to you, but having a body that won't let you say or do what you want. I took a video of Finn the other night proving just how much he understands what you say to him. When I see this kind of behavior from him it just reinforces why I am doing this. I chose not to go back to work so I could stay at home and work with Finn, even though the extra income would be very helpful. My house is always messy b/c I spend most of my day working/teaching Finn. Seeing him learning and growing just makes my heart so incredibly full and confirms that the decision Ethan and I made for me to stay at home with Finn was the right one. He pretty much makes me a proud mama every day!

a few videos of Finny

Finn tries so hard to crawl...but he just can't seem to figure out that using your arms is key in crawling!

Tis the season to put on some weight.

Well it has been about 6 weeks since Finn had his consultation with the Feeding Clinic, and I am happy to say that since that time Finn has put on over a pound! He has been the same weight for about a year, give or take a few ounces. I am so pleased. He is gaining this weight just drinking the regular Pediasure...imagine how much he could put on if he drinks the Pediasure 1.5 (which they want him on...I just hope BCMH comes through with funding). We went to his CP clinic appointment earlier this week, and I was feeling good. Finn weighs over 25lbs and 3 feet tall. But his doctor comes in and says how he is concerned about how Finn is growing...and if things don't start picking up then we will have to go see an endocrinologist. UGH! Okay people, I am trying my hardest to get Finn to grow, it's only been 6 weeks since the feeding clinic...give us some time to get things rolling. So I just left that appointment feeling kind of deflated. Finn and I bust our butts trying to get results and when we finally gain a little ground it is still not good enough for the professionals. I just need to let it go, breathe, and be thankful that Finn is growing...even if I am the only one who notices...

In other news Finn had a meeting with his team at his school to discuss the start of his IEP (individualized education plan). This IEP is important because it will help teachers understand what Finn needs to work on, how he learns, and what his strengths are. I was actually pretty pleased with what his teachers, therapists, and specialists concluded about Finn. Especially what the vision specialist said about Finn. She says that he tracks objects, makes eye contact, looks at toys that are put in front of him, as well as tries to touch the toys placed in front of him. Obviously these are all things that I know Finn is capable of, but after our latest eye doctor appointment I was feeling pretty down about Finn's vision. I was relieved that this professional was able to see the same abilities in Finn as I do...just another example of how doctors do not know everything....Her conclusion of Finn makes me feel pretty positive that he might do okay in a regular school's special education program and not have to go to the school for the blind...but we shall see...In February we will have a meeting with Finn's team, Westerville school district, and the school for the blind where we will be able to ask them questions about which school will best be able to meet all Finn's needs. So no pressure mom and dad...His teachers and therapist all pretty much said the same things about Finn's personality, how he is a sweet boy, how he likes to be the center of attention, and likes adult interaction more than with his peers. That last statement I can't blame him because adults are all he knows. But I agree, Finn is a very sweet boy...he is the best.

Finn has been enjoying the holiday season so far...he got to see Santa and help me bake cookies...

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