Monday, July 23, 2018

Lucky Fin Project Weekend

Holy Crap. That is the only way to start this post. What an amazing weekend Jude and I just had up in Troy, Michigan with the Lucky Fin Project. For those of you that haven't heard of it, please go check it out here:



This organization was started by Molly and her daughter Ryan who was born with a limb difference on her hand. When Jude was born I found this organization online through Facebook I believe and as a new mom with a son effected by ABS, it was a lifesaver. It was nice to know that I wasn't alone and that there were other kids out there like him. As Jude got older I kept seeing this thing called Lucky Fin Project Weekend and I always thought how cool it would be to take him. Well this year we got to go! Within 3 weeks, I decided that this would be super beneficial because he is starting VPK this year and I wanted him to know that he wasn't alone, that there were other kids out there like him and that it was ok to be different.

So Friday morning we got up super early and drove to the airport, the whole way there he was so excited to fly on a plane! It was adorable, until he asked me for the 1,000th time, "are we there yet." I finally had to tell him that I promised to let him know as soon as we got to the airport! Well we get there and all goes well and we are sitting by our gate with this young lady walks by who is missing part of her arm and she is wearing pants that say Lucky Fin Project on them. Now, we just drove almost 2 hours to get to the airport so I said, "you must be going to the Lucky Fin Project weekend I assume?" Of course though, why else would she by flying to Michigan?! Either way it started an awesome conversation with her and the young man that was with her who was missing an arm and a leg. They were so sweet to Jude and showed him their "robot" arms and legs and he was in awe. This is where I think it all started to make sense in his little head.

The first night we were there was just a socialization for every parent and child that was going to be part of this weekend. Jude met friends right away and started running around the hotel with the other kids while the parents and I talked. It was amazing to hear their stories and see each childs difference. Not only that but the kids didn't seem to notice but when asked, they all showed you their limb difference. As the kids were running a mom and her daughter came up and started playing and talking to us. We immediately hit it off and hung out the rest of the weekend and the kids became inseparable, it was beyond adorable and we can hear the wedding bells now! We will call her miss lucky fin. We ended up hanging out at the pool with them and Jude got to show off his amazing swimming skills. Really won over his little girlfriend ;)

The next day was the picnic and this is where it hit home for me. There were 500 people registered for this event. 500! So picture this, 500 people there either as part of the family or the person with the limb difference, but here, it was normal. Siblings were used to it, parents talking to other parents about their stories and their lucky fin kid, and kids playing with other kids that were just like them. Unique. It was amazing and I don't have quite the capacity to describe the feeling as a mom. But Jude lite up and would come running back to me and say "mom! There are so many other people like me!" It made me smile and get tears in my eyes. The other cool thing was when the Lucky Fin ambassadors would dote on my child. They entertained him when he wanted to see their "robot" arm and he was fascinated.

Side story: 

We went to Starbucks on our way to the picnic and one of the Lucky Finers was there who we hadn't met the night before. Jude saw her and said "Mommy, she has a cool robot arm, can I go tell her that she's my hero?" I immediately said yes and we walked over to tell her and she was so sweet about it! She came back to our table to talked to us while we all waited for our drinks and she showed Jude her amazing arm and all that she could do with it. She was so amazing with Jude and made such an impact on both of us, I can't thank you enough! You are why he became so comfortable showing his hands and he talks about you still. 


Anyway, so after the park we went back to the hotel to rest and clean up before our Lucky Fin concert that night! Tony Memmel is a one handed guitar player and is amazing! He was playing baseball with the kids earlier and then put on a concert for us later that night. It was so cool to see so many people try to jam into a tiny conference room and to know that everyone had been through roughly the same thing. If you want to see more about Tony his link will be at the bottom of this post! So Tony played and all the kids sang and Jude loved it and said he can't wait to play guitar one day like him! After the concert was over we hung out with little miss lucky fin and her mom, as we had been doing all weekend but this was our last night :( . There were so many people hanging out and playing together as parents continued to talk and share stories. It's just something that can't be forgotten.

The next morning we woke up and met up with miss lucky fin and her mom to have a fair well breakfast as they live in Chicago and we are in Florida. So the kids ate and played and then we sat with some other ambassadors from the Lucky Fin Project and put stickers and gems all over each other with some Stump Kitchen tattoos (see that link below too!!) It was a perfect way to end the trip. To say we were sad to leave is an understatement but to be able to have taken my son and see how much he changed in the matter of a few short days. By the end we would take pictures and they would all show their lucky fins, so proud and happy. It makes me tear up when I think about it and to have seen him grow so much. Not only that but I was able to talk to other parents. I went into this all for him, to make sure he had a good time and knew that even if he was the only one in his school like that, it was ok because there were other kids out there just like him. But I was able to get ideas off other parents, share my story and my struggles with people who understand exactly what I am going through. With that, I was able to see older kids with no problems whatsoever and it gave me hope. Not that I thought Jude wouldn't be able to do anything but it's comforting to see that he is not alone. That we are not alone.

We flew back on Sunday with reluctance. Jude did not want to go and neither did I, we had made such good friends and memories that we are counting down the days until next year! We got on our plane with the pleasant surprise that the young lady and gentleman who were on our flight there, were also on our flight back. Jude was quite excited to see them as we had hung out with them a few times this weekend. As we got off the plane and looked and me and said, "there they are mom! Can I go say goodbye?" And with my yes, he ran up yelling their names to make sure he said goodbye to them.

Lucky Fin Project was a big aspect of our lives before this weekend but since then it has become even bigger. Jude has come back talking about our trip and showing people his fingers and toes and telling him that he is not alone, that there are people like him and that he is super cool! It brings so much joy to see him be so proud. Thank you Lucky Fin.

Here are some pictures from our trip:



Waiting to board our plane! 


This kid had the hook up for the flight over! Finding Nemo pillow included ha! 


Making sure he looked cool in all his new swag


Molly and her daughter Ryan! Can't thank her enough! <3 



Miss Lucky Fin! Melt my heart! 


Jude loved Brian who was a one handed drummer



Ashley, one of the ambassadors who flew there and back with us! 


Rebekah who is also an ambassador! 


This is the lady who runs Stump Kitchen! 


How cute are they?!



Tony Memmel before his concert




Rocking our Lucky Fin gear


Love our new friends! 


Saying goodbye to Molly :( 


Some of the amazing kids Jude met! 



Tony Memmel - http://tonymemmel.com/wp/
Stump Kitchen - https://www.stumpkitchen.com/


Sunday, January 7, 2018

1 Year Later

Wow. I can't believe that it has been a year since I last wrote! There has been so much going on in our lives its hard to think of where to start.


It's been a busy year for the Spenceley family and not always in the best way but I will start with my perfect little lucky fin. (Pardon as this blog might be all over the place trying to catch everyone up!)


My lucky fin had surgery again in August to separate his toes and release the last band around his pinky finger on the right hand. It was supposed to be about 2-3 hours depending on how long the fingers and toes took. They were only supposed to be releasing one toe from the other 2 because of how the toenail continued to grow back and risk infection in the other toes. Well when the surgeon came out he told us that he was able to release all 3 toes and he now had 5 toes! And his finger was nice and simple as well. This was the pinky finger that we thought he would lose the tip of on the last surgery because they weren't sure they could keep it and get blood flow to the tip of the finger where the bad was. Luckily the surgeon was able to release that bad with no complications and our lucky fin did awesome.
 
 

 




(Top two on the left are before surgery. Next 2 are post surgery where he insisted he walk himself out of the hospital. Following pictures are right after the casts came off and then a few weeks after when they are healed)


Next!


We escaped for the crazy hurricane that was trying to run over Florida this year! We went up with my mom to her friends house in Alabama. It took us about 8 hours to go 6 so that's not bad all things considered! But we got there around 11:30 pm and when I opened the door I was greeted by 4 donkeys and a horse. I thought I was seeing things but no, it was for real! And then I got my youngest out of the car and he was petting a donkey and I tried to push him away so we could close the car door and he bit me. Ok, maybe not really bite because they were super sweet animals, but he definitely nibbled my arm and took my sons sock off. Needless to say, my kids had a great time on this mini farm and it was a nice little get away while the weather was bad back home.

 



The oldest (the lucky fin) has been growing into such a little boy over the last year that it's hard to believe that he is 4 years old now. He and his little brother started preschool in October and they absolutely love it and it's awesome to see them grow and learn. One of my favorite things is when they come home with project or art work and they are so excited to tell me all about what they made. I have a huge stack of their artwork in my room and my lucky fin always goes through it and wants to go over every piece of art he's made. Every time he is in my room this happens! His little brother does the same but he is still learning to talk so it can be comical listening to him try and tell me about what he has made. This was their first day of school!



Short funny story: The boys were supposed to be batman and robin for halloween. Their dad got them their costumes and they lived in them the week leading up to halloween. Well come day of and my youngest wants nothing to do with his robin costume... totally refused. So his dad put him in spiderman and here they are! 





The boys also had their first airplane ride up to Virginia! This trip was such a last minute (stressful) trip and when I say last minute I mean super last minute. My parents went up there for a wedding and I didn't have anyone to watch the boys on Friday while I was at work so I had to take off unfortunately. But it worked out because late Thursday night I was on the phone with my mom buying plane tickets to have a weekend getaway with the kids and we flew out Friday morning at 9:30 am! Talk about crazy but they boys had so much fun that it was well worth it in the end. 


                                 


 I think I have hit all the major life updates for this last year. It was a busy one that's for sure (clearly since I didn't post for a year!) but we are now in 2018 and I'm sure this will be a better year to come. The boys are growing up into sweet little boys that have a love/hate relationship. My lucky fin protects his little brother and the youngest does his best to annoy him :) Here are a few more pictures from our year.




We had a girlfriend of mine take some photos of me and the boys




Some good friends got married and I was in the wedding and my lucky fin was the ring bearer! 





They loved seeing Santa! 


After their first school Christmas play



Merry Christmas and Happy New Year from the Spenceley boys! 












Saturday, January 7, 2017

Flip Flops

I know it's been a while and I feel like every time I post I start with that! Whatever haha. Anyway, our life was very crazy starting in October through December. I started my own wedding and event company and we had 16 events between those few months. I wasn't fully prepared to be that busy but I loved every minute!! Shameless plug - you can check us out at facebook.com/chelsearaeweddingsandevents ! (We travel too ;) )

Anyway back to my kiddo! So he has grown up so much the last few months. Each time he gets up in the morning I look at him and think "how in the world did he get so big over night?!" He is a wonderful brother - for the most part - and loves helping his little brother and tries to help take care of him, sometimes too much and annoys him haha. He also loves to clean! How did I get a 3 year old who loves to clean? I don't know but I'm ok with it all! Our lucky fin loves to play outside and ride his little 4-wheeler and laugh as he goes on by, it's so funny to watch!

However, as we go I wake up, often, dreading, the fact that he will notice his fingers and toes more and more. He has brought up the fact that Cooper has bigger fingers and his fingers are still baby fingers. To that I just tell him that God made his special but he insists that his fingers are just babies haha.

But this morning was different. We were walking around Target and made it into the shoe section and saw some Paw Patrol flip flops and said "mommy! I want those flip flops." To which I proceeded to tell him that no, we were not getting him flip flops. Fast forward and he is telling me how Cooper can have flip flops but not him... This is where I died a little. I knew it was coming. I had to tell him that God made him special, that he couldn't wear flip flops because he doesn't have toes on one foot. I had to stop and explain to him, a 3 year old, why he couldn't have these flip flops. It was heartbreaking but it was the first step in what is to come as each day passes. He ended up crying, I think it had more to do with the fact that he couldn't have the flip flops rather than not having toes, but it still stayed with me the rest of the day. One day he will fully understand and that is the day I am not looking forward too.

As far as surgeries go, we have an appointment at the end of the month with Shriners to go over his next surgery on his hand. That should take place probably February or March I would assume. I will have a better update after we meet with the doctors in a few weeks.






Have A Blessed Day!





Thursday, September 1, 2016

Inside the womb!

I found this amazing video! I may have posted it before but I don't think so... Anyway, It's a great video that shows ABS inside the womb! It's an awesome insight into what it looks like from the inside!

https://www.youtube.com/watch?v=UurH8SsVoIM


And now for a short update on our awesome lucky fin!

We went to Shriners a few weeks ago for a check up since it's been over a year since his last surgery (crazy! I know!) Well let me back up. A few days before his appointment I noticed something rough on his foot - the one with ABS - and I thought it was just a calace and it turned out to be his toenail growing back. The one we had removed with the very first surgery! So needless to say, I was happy to have an appointment a few days later.

While we were there we saw our wonderful surgeon who has taken great care of my baby. He was very impressed with how everything was progressing but... more surgery to come. Yes yes, we knew there would be more but not this soon. The pinky finger tip that he saved, well he didn't release the band because he was focused on saving the tip like we asked him to do. This means that we need to go back in and release the band and potentially remove the toenail again. With that he will separate the 4th toe from the 3rd, this way if the toenail ever grows back, we won't have to worry about it!

Talk about shock! I was expecting a "good job, looks great, see you in a year!" and instead we got the news of surgery much sooner. On the bright side, they all were very impressed with our lucky fin! He would walk around showing people his hands and toes because we have asked him so often to do so; which they had never seen. He sat politely and used his manners; it made me proud :)

And as far as the littlest one goes, well he is doing fantastic! Growing and eating like a weed and is trying so hard to keep up and copy his older brother :) I couldn't ask for better boys!
!



The day before he screamed because he got the red spoon... he loved it the next day.. Life of a toddler!


My sweet little one! 

Monday, April 11, 2016

My Miracle From Heaven

Have you heard of the new movie that is out called Miracles from Heaven? If you haven't, I highly suggest watching the trailer and then going to see the movie! Anyway, a little back story on the movie (no spoilers, I promise!) It's about a little girl who was diagnosed with a very rare digestive disorder that consumes her life and ultimately would lead to death. There is no cure for what she had but yet here she is, alive and well! How you might wonder? Well, after a routine hospital visit she went back home and although was told not to, she was climbing a tree with her sister and fell head down 30 ft and was knocked unconscious. Amazingly enough she came out of that (3 hours later) with only a minor concussion and some bruises and cuts. Over the next few days and weeks she starts getting better! They go back to visit the doctor and the results show that she is cured of the disease that had taken so many lives! Miraculous right??

What does this have to do with ABS or our lucky fin? Everything.

Throughout the entire story you sob and ball and cry and end up with make up all over your face by the end of the movie. For all the obvious reasons because it is a tear jerker. But for more, un-obvious reasons as well. 

I remember when our lucky fin was born being so angry that God had picked him because we had specifically prayed that our child would be healthy with "10 fingers and 10 toes." That may sound silly to some but we prayed it and our son came out missing fingers and toes. My husband and I had so many late night talks about being frustrated or mad at the situation. About possibly loosing faith because God had clearly ignored our prayers. Why would He do that? I still don't have the answer, so if that's what you're looking for; I'm sorry. But this movie was an eye opener. I realized that although I knew I wasn't alone, this reassured me that there are others out there going through things far worse than I and having the same questions I had/have. 

Not only did I cry because it was a sad movie, or because I am a mom and couldn't imagine going through what this mom endured. No. It was because all of her emotions were the same as that I had. All of her reactions were the same. Everything about it was so similar to me and my story with my son. 

Now please don't get me wrong, I know that our lucky fin's condition was and is not life and death like this mother had to endure. I can't even imagine. But the hospital scenes of a child hooked up to monitors, crying, wanting to go home. I've been there. To see your child like a limp noodle because of the surgery they have gone through.. I have been there. And although we are done with surgeries for now, there is no guarantee that we are done forever. 

I feel like this post is such a hot mess of stories and emotions that nothing is coming off clearly... 

Either way, I highly recommend all my fellow ABS family members to go watch this film, whether you are a Christian or not, I think you will be able to relate to all of the emotions that mom dealt with and all the questions she had during the time her child was sick.

It was an incredible movie! But be prepared to be emotionally drained after ;) Don't say I didn't warn ya! 




Have A Blessed Day!

*No, I am not getting paid to advertise this movie! But here is a link to the trailer!*


Tuesday, January 12, 2016

Eat, Poop, Sleep, Repeat

As I was looking over the blog thinking "hmm maybe I should write a post, let me see the last time I wrote something.. Nov 8th?!!" My apologies for such a long gap in posts; I will try and be much better about it from here on out! Although I will say, I started this blog to help anyone out dealing with the same situations and now that surgeries are done we seem to be in limbo. I am however, preparing myself for the questions to come about his fingers and toes now that he is getting older as are his friends.

Speaking of which - There was a friend not too long ago that we play with almost every week, he is 3 and Jude is obviously 2. Anyway. He has never noticed my sons finger or toes until the other day and he pointed and said "what happened to his toes?" And my friend ever so sweetly just said, "God made him extra special." Why can't every parent respond this way?! Oh how I wish. Melted my heart as they moved right along to play like nothing was different.

Anyway back to how he is doing.

We started potty training and it's actually going very well!! I am impressed with how little accidents he has. Except... when he does have one, it's massive. I mean... pee is just everywhere. But! We started and that's all that matters. He is officially a big boy! We started with the three day method which seemed to work very well. And I know most parents do the full on naked day one, we decided to start with pants, this way he got used to it straight from the beginning and it worked perfectly! Needless to say I am happy to only have one in diapers now!

As for his little brother, well... not so little anymore. Out little chuck (my linebacker as I call him) is roughly only 10 pounds lighter than Jude and he continues to grow! He is trying to crawl and even though he can't get around by crawling, he is a huge mover.


Here are some updated pictures :) 



He was trying to copy mama :)


Our newest baby - Ellie Mae 



Cutest ever right??



These were their "matching" Christmas Eve jammies! 



Have A Blessed Day!

Sunday, November 8, 2015

A birthday Never To Forget!

So our lucky fin turned two on October 19! It was totally awesome too because my husband has been working 6 nights week to help pay off some bills that we have and don't want to worry about anymore. Anyway, he is only off Sunday and half day Monday before he goes back to work on Monday nights. (I know, he's my hero too ;) )Well, Jude's birthday happened to fall on a Monday! Talk about awesome timing! Jude got to spend his birthday with both his parents and of course his little baby brother. And boy did he have a blast. Let's see... We went to his swim class that morning, he loves to swim and is just like Nemo when it comes to being like a fish. After that he had a celebratory breakfast where he got to eat whatever he wanted. Mostly ended up being bacon though; just like his father. After, we went back to swim so he could watch his little brother float around in the pool. Next we went to the store and he got to help pick his present! We had a few things in mind and as silly as it may sound (letting a two year old decide) we let him pick hi gift and he chose an awesome tool table! Daddy was able to set it up during his nap so when he woke up it was all there and ready to play with. His face was priceless. - I should mention he got to help dad build it and then threw a fit when it was nap time but was a brand new person coming down the stairs to play with his toy the rest of the day. -

After that we helped dad get ready for worked and gave him a big ole hug and kiss goodbye as he went off to be mommies hero <3 Soon after I took the boys to Sams to get some pizza for Jude's dinner. I think if I let him, he would eat pizza every meal and eventually turn into a pizza haha. So he of course loved that and got a celebratory Sprite so obviously he was in heaven over that! 

Then what came next melted my heart. 

So every Monday night we go to our friends house to have dinner and fellowship. Everyone there (sometimes 25 people) love my kids and let me take a break as a mom for just a few hours. Since it was Jude's birthday they were extra awesome to him. But here's where it gets super sweet. Some of our friends were going out to the store and while there made a phone call back to the house. My friend on the phone asked Jude if he wanted chocolate or vanilla. Jude immediately answered with "vanilla" and before I knew it they hung up the phone and were at the house with a vanilla cake for Jude. We all sang and he got to blow out the candles (many times I might add). He is so blessed and he doesn't even realize it. Needless to say he had a blast and ate way to much cake I'm sure.

So there was his actual birthday.

Throughout the week people kept stopping by with gifts for him and he just kept saying "happy to me" - meaning happy birthday to me! haha - 

The following Sunday we threw him a nice big spiderman birthday party (he's obsessed with spiderman) at the park near our house. Everyone came and Jude was in heaven! He got to eat more junk food, play on the park, eat more cake and get presents. What kid wouldn't like that? 

Needless to say he had a wonderful birthday party and has adjusted quite well since. He got his last 4 teeth we have been waiting on what seems to be forever and so now just for the molars. - Can I skip that process please? - 

He has also transitioned into a semi big boy bed. His crib turned into a toddler bed so we took the railing off and he is now officially a big boy! He only attempted to escape once, on the second night, and I was in there so fast I think it scared him to ever try it again! (No I didn't yell to scare him!) 

All in all I am blessed to have such an amazing little boy to share life with (two now!) and I can't wait to see what bithday's 3, 4, 5, 6.... you get the point, may bring for us! 

I love you my lucky little fin! Keep On Keepin On! 



Some Birthday Pictures for yall :)





The cake our wonderful friends got him. 



His GIANT cupcake on his birthday. What a little ham :)


Thank you to our wonderful friends who helped make Jude's birthday special! 


First picture as a 2 year old! 




Have A Blessed Day!