Catching Up

Wow it has been a LONG time since I have posted anything on here. I figure I need to start posting again so family can keep up with what is going on in Lucca's life! Alot has happened since my last post. For starters, Lucca and I have started a life on our own and we are doing just fine :) We make a great team! Don't get me wrong, life as a single mom is definitely tough, but seeing how happy my little man is makes it all worth it. Lucca started Kindergarten in August 2014 and in November he had corrective surgery on his foot/ankle. His ankle was starting to turn inward and after 2 rounds of botox shots to try and correct it, the doctor said surgery was the only answer. So, surgery it was. His Achilles tendon was lengthened along with another tendon in the back of his leg, and he was put in a cast for 7 LONG weeks. In December we took Lucca to Disney World! He loved it! December 29th Lucca turned 6 years old! Where has the time and my little boy gone?? I threw a superhero themed birthday party for him and it turned out so cute! On Jan 5th the cast finally came off, but we have been having issues with swelling. Right now he is having to wear a compression sock to help. Hopefully it does. ALso a HUGE accomplishment on Lucca's part. He figured out to move around in his stander! He uses his hands to move the tires and scoots around his classroom and the hallways at school. His teacher said one day during "quiet time" in his class, he pressed the handicap button on the wall and tried to escape the classroom! That's my boy :) God is working in his little body and brain every day and I couldn't be more proud of him! Here's a few pics to show what he's been up to the past year :)

First Swimming Lesson 6.13.13

Lucca had his first swimming lesson today at Episcopal School. He did a lot better than I expected he would and actually held his breath a few times when the teacher put him underwater. Although after the lesson was over, water started coming up, so he definitely swallowed some down. Hopefully these lessons will help him learn to swim and/or help build leg strength!

Horse Therapy

Lucca started horse therapy a few Mondays ago. We went for an eval day and he did so great! I wasn't sure how he would do on the horse considering he has never been on one, but he did so well! He held onto the saddle perfectly all by himself and after 15 mins he was already starting to sit up better and straighter. I think this is going to be a very beneficial therapy for him, as well as enjoyable :) Not only does riding the horse work on his balance and posture, but the therapist stops in the shade and works on OT stuff with him as well. Can't wait for our next session!! 

Lucca's Makeover was in the News :)

Boy with rare disease getting more sleep after dream room makeover | jacksonville.com

The Florida Times Union chose to do a piece on Lucca's room makeover! I hope this allows work of this special organization (The Starlight Project) who did his room, to get more recognition for the wonderful things they do for children with special needs!

Lucca's Room Makeover 4.13.13

A few months ago a team called "The Starlight Project" contacted me about making over Lucca's bedroom. I had applied for it last year but it just wasn't the right timing. So this time around I was super excited that they wanted to do his room. They got in contact with his PT and ST at Wolfson and collaborated some ideas about how to incorporate some therapy type things in his room. Their goal was to allow Lucca to have a functional and safe place to play and sleep. Lucca has outgrown his infant crib (yes, he was still sleeping in an infant crib) but wasn't cognitively ready yet for a toddler bed. This goes to show you how perfect God's timing is. Here are some before and after pictures of his incredible room transformation. 

 "THE REVEAL"

 The Starlight Project Team! Such amazing people!!

The drawer underneath the bed pulls out into a changing table.. they put it down low because soon I will not be able to lift Lucca very high. Talk about good thinking!

 

 Sensory boards on the end of his bed

 Love all these quotes! They are so applicable.

 Lucca's incredible new bed that he will be able to sleep in for years to come! LOVE the quote they chose for above the bed!!

 Lucca's new bookcase! How awesome is this?!

 Zach Strom, the mastermind behind thinking up and building Lucca's bed!

 Cherie and Craig Sussman. The couple who started this project.

Thank you so much to the incredible group of people of the Starlight Project for choosing to make Lucca's room a more functional and fun, but safe place for him to play and grow up in. You have changed our lives and we are forever grateful and thankful to you guys for doing so.

GroopDealz

So there is this website, GroopDealz.com, that I have recently discovered..... LOVE it! I have already bought several things from them! Right now they are doing a giveaway of these chevron bags that I REALLLLLY want to win!
http://blog.groopdealz.com/chevron-bag-giveaway/ 

*crossing my fingers*!! Go check them out on FB and Pinterest! Super cute stuff at great prices :)

Come and Gone

Wow, where has the time gone? The holidays have already come and gone and now we are in another year! The holidays for us this year were pretty good. Not a lot of rushing and hustle and bustle. Christmas Eve we went and spent time with Randy's grandparents. Christmas morning (for the first time since Lucca has been born) we woke up, I made a egg, bacon, hash brown casserole and Lucca some Reindeer pancakes, we opened presents and just relaxed!  Every other year we have had to wake up, hurry and do our Christmas to meet family somewhere by 11:00. So it was nice to have OUR family time this year. Then after we were done with our stuff we went over to my Mamama's house (Dad's mom) and had dessert with that side of the family. Everyone loved their crafts that Lucca made for them this year :)

So crazy to think we are in 2013 already. 2012 was so full of ups and downs (mainly downs) and I am very hopeful that, even though with Obama Care and all of our medical stuff going to hell and back, that it will be a year full of blessings and accomplishments! Hope everyone had a safe and Happy New Year!!

(Just a few pictures taken over the Christmas Break)

Christmas Crafts

I mentioned in a previous post that this year I really wanted to get in the "holiday spirit" with Lucca. I have been trying to do small crafts with him that I know he is able to do and this is what we have come up with thus far. There is also another craft that I cannot post yet, as it MAY be a gift :)

  Lucca's gingerbread house :) With a little help from mommy.

  2012 Christmas Tree made out of Lucca's handprint.
Making crafts has really turned out to be quite fun with Lucca. He LOVED the paint, and it proved quite a challenge for me trying to keep his hands out of his mouth! (As you fellow P-MS parents can relate to that one). Nonetheless, They have been totally worth it! Love making memories with my little man!

Happy Thanksgiving!

..A roof over my head & food to eat..

..A job to help provide for my family..

..Wonderful parents who are supportive and encouraging..

..The few TRUE friends that I can go to for anything..

..For a God who forgives and loves me no matter what, that allows me to have him in my heart so that one day (very soon) I will be able to live with Him and watch my son walk and talk and live with no pain.. 

..For family..

..For my blessing of a child, who has changed my thinking and the way I look at life..

There are so many things that I am thankful for,  but I think one of the tops on my list is that I have been blessed with the title of being "Lucca's Mommy". It is by far the best title/job I have ever had and ever will have. Even though my life is NO WHERE NEAR what I had "planned" or saw for myself, I cannot even begin to imagine NOT having Lucca in my life. (Jeremiah 29:11)-This has become my favorite verse to live by. "For I know the plans I have for you," declares the Lord. "Plans to prosper and not harm you, plans to give you hope and a future."  God has everything in control, and continues to remind me of that multiple times when I start to lose faith. Some people I have met have told me that they do not believe God gives us our children for a reason, or that He doesn't choose us as parents for these special children. I'm sorry but I absolutely have to disagree with that. There are times when I have thought, "Why me? I am not strong enough to handle this." And then I quickly think, what if Lucca had been born to a crack-head, or someone who is too lazy to make anything of themselves? They very well might have abandoned him, or neglected his needs or not had the patience to try and figure out what he is trying to tell me, or know to look out for signs that he is sick,etc. I believe with every piece of my being that Lucca was given to me for a specific reason. He has made me a stronger person, has taught me to love unconditionally, to cherish every moment, PATIENCE, and  among many other things, to appreciate every small accomplishment  that he meets. Do I wish that Lucca could walk and talk and color? Of course I do. Do I wish every day that he could tell me he loves me, or play with other kids his age? Absolutely. But then he wouldn't be my specially made little Lucca. My Lucca that God gave to ME. You know another way I KNOW Lucca was made just for me? Lucca's syndromes are very special, and complicated. He has two very rare syndromes. He has a "Unbalanced translocation between chromosome 22 and 10". More than 80& of the time, children with UNbalanced translocations, have them because one of their parents have a BALANCED translocation. The geneticist told us to prepare ourselves for finding out that one of us carried that balanced translocation. NEITHER one of us did... and on top of being the only child in Jacksonville with his arrangement of chromosomes, 3 different geneticists have told us that they have never seen an unbalanced translocation between chromosomes 22 and 10 before... Now THAT is a child specially made by God! And I am SO thankful to call him my little dude! 

Parents, don't take for granted the little things your child can go. Hugging you. Telling you they love you. Telling you they are hungry or they don't feel good. Running around the house-getting into things. Some parents would do anything to experience these things a LOT of parents take for granted. Be thankful for the gifts God has given us! and HAPPY THANKSGIVING TO EVERYONE!!

Blessed Beyond Belief!

As most of you know, we have been trying to purchase Lucca a walker for the past year or so. We have held several garage sales in order to raise enough money. We finally raised enough for half of the walker. On top of trying to raise enough money, we have run into obstacle after obstacle with insurance.  Once we got Lucca's wheelchair, insurance told us that since he requires a wheelchair then he doesn't need a walker, since he is non-ambulatory. So we have been trying to fight them on reasons WHY he needs a walker. We finally got them to agree to "pass" the request. So, when we finally raised enough for half of the walker, we told Lucca's PT to go ahead and try to submit the order to the company to have it started. That was more than several months ago. Then we get the message that Wheelchairs Plus (the same company who made his wheelchair) doesn't take my insurance anymore. So...on to the next company. We wait several more months, and keep getting the message "There is a hold up with your insurance." After hearing that response multiple times, I call my insurance just to find out-guess what-they are not an authorized provider through my insurance either! My insurance gave me a list of people that they take and said to contact one of them. Well, this is back in October, and in January my work is switching to a different insurance....So i was faced with, do we start the whole process over with one of these new providers just for my insurance to switch in the middle of the process, or wait until January? Then a few days later my mom called to tell me someone from the company we were currently dealing with had called her and told her that the request for the walker had been approved and they were going to go ahead with the process of making Lucca's walker, AND at NO cost to us!!! All I can say to that is PRAISE THE LORD! He has once again blessed us beyond belief! God's timing is absolutely perfect & He has everything under HIS control. He will take care of His children! What a wonderful, wonderful Christmas present to my little man. Thank you Lord for once again providing for your children.!  Lucca received his walker at Physical Therapy last Wednesday :)