World Cerebral Palsy Day

Today is World Cerebral Palsy Day, a day that’s all about ideas that will change the world for people with cerebral palsy.

“Last year’s winners include a designer walker and a spill-proof cup. I have an idea—but the thing is, it already exists. The concept: More research for cerebral palsy. Some 17 million people across the world have cerebral palsy, and an estimated 350 million are closely connected to a child with CP. It is the most common childhood physical disability—and yet, there’s been a severe lack of federal funding for research into treatment and prevention.” – Ellen Seidman

So your asking what can I do on this day?

If you have an idea to change the world for people with cerebral palsy go to: http://en.worldcpday.org/

Or

Help fund the desperate need for research. Our US based cerebral palsy organizations that are funding research and leading national advocacy efforts for the CP community are:

LetsCureCPReaching for the Stars. A Cerebral Palsy Foundation,  Cerebral Palsy International Research Foundation

Or

Make a direct impact on Mattie’s life and help fund a trip to NY so she can get new leg braces by making a donation HERE.

Lets take advantage of this national recognized day and do something for the 17 million people across the world who have Cerebral Palsy. Please and Thank you!

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She is perfect

Mattie’s great-grandfather, “Papa”, passed away this past weekend. He was an integral part of my life and Mattie’s life. When I was on hospital bed rest with Mattie, he would come visit me everyday. Some days he would sit by my bed rubbing my back. Other days he would wheel me down to the garden for fresh air. He would always call first to see if I needed anything. He did this for almost 2 months straight, never missing a day.

When Mattie was born, he would tell me that she was perfect and she was going to be just fine. When Mattie was diagnosed with CP, he uttered those same words. Every time I called his house, the first thing he would ask me was how Mattie was. Every time he came to my house, he would come with a huge pocket full of change to put in her piggy bank. This is for Mattie, he would say. A few weeks ago I was visiting him in the hospital and he told me again “she will walk one day, I know its taking a while, but she will walk one day. She is perfect.” The day Mattie finally takes her first steps; I will look up towards heaven and tell him… you were right. Que en Paz Descanse Papa ❤

I know I owe everyone a Mattie update. So much has been going on the past several months that I have not had time to keep up with everything. I promise an update in the coming weeks.

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Papa and Mattie

 

The New Normal

I know that I have been silent for awhile now. I am not sure why. When I try to sit down and write an update I am not even sure what to write anymore. It seems like life went a bit crazy (whirlwind) last October with selling our house, moving, Mattie’s surgery in TX, and then a trip to NYC for therapy. November and December went by in a blur with trying to help Mattie with her new legs, unpacking, and trying not to get too stressed out about the upcoming holidays. Jim and I were spent. We were going through the motions. We had hit bottom.

Then one random morning, just after Christmas, I woke up and felt ok. Nothing particular happened leading up to that morning but I realized for the first time, we actually enjoyed the holidays. We ended up spending a ton of time with the kids and managed to find time to reconnect. We had no where to go but up, so we did. It was as if a blanket of calmness and peacefulness washed over us. For me, it was finally about acceptance of our life. I have written before about the acceptance of having a special needs child, but acceptance of the life that it brings is different.

We are out of town 2-3 times a month for therapy and travel every 3 months out of state for ABM. Mattie has some type of therapy every day. It is hard on all of us. We have finally accepted that this is our life right now and accepted that this won’t be forever. I guess this is our new normal. I am hopeful at some point in the next few years that things will slow down for us. I know that these are prime years for Mattie so we all push on. Our “non-new years resolution” is to take the time we do have with the kids and try to enjoy it. Our weekend trips for therapy are spent living out of a hotel, but instead of hating it like we have in the past, we have learned to have fun with it. We have managed to become more efficient and better at balancing our everyday life.

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Mattie is really making good progress. She had SPML surgery in October. This has allowed her to long sit, side sit, and pull to stand. She continues to have trouble with her knees and does not like to bend them, the one downfall of the surgery. This is not common at all according to her surgeon and ABM practitioner in NYC. So we work hard at bringing attention to her knees. Mattie will tell us “I want to stand up” “I want to walk”. I love hearing her say this. She is working hard everyday to do what we take for granted. She is determined and motivated. With those two traits this girl will be walking one day!

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Thanks to our very generous family, we were able to take Mattie to Disney for her birthday. For 3 months leading up to her birthday she would tell everyone she would see (strangers and all) that she was going to Disney World. We had no plans to take her at that point, so where did she come up with this idea? She is a bright one. I guess she figured if she told enough people that she was going, she would! I could not say enough amazing things about Disney and Magic Kingdom. They were great with her. Mattie and Joba had a lot of fun, stayed up late for fireworks, and had breakfast with Minnie & Goofy. Jim and I were worn out but it was a nice mini family vacation.

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Since Mattie just turned 3, we had her official IEP meeting a few weeks back. In our state we have a program for kids 3-5 years old that are developmentally delayed. It is a pre-school program to get them ready for mainstream kindergarten. We had to do several evaluations to determine where she would be placed and what services she would be offered. We were given a choice of 2 different schools. One school has a physically impaired (PI) classroom with a full time nurse on staff. The other school has more of a pre-school type setting (EELP). We were able to visit both classes and make the final decision. We both felt the PI class would be too restrictive for Mattie so we choose the other school. From what we saw, Mattie will be the only child not walking but we feel like that will motivate her more. The kids in the class were so cute! 5 little kids, all with different abilities, coming together to learn. We have opted to start Mattie in August since Joba will be starting kindergarten at the same time.

The actual IEP meeting went better then anticipated. We prepared by researching, reading a fantastic book on the subject, writing our goals and a draft IEP. We knew going into the meeting that Mattie would not be offered speech services because she had passed the speech portion of her evaluation. She really is doing well talking, but needs help with articulation (not everyone can understand her). So we will continue with speech therapy outside of school. Mattie was offered PT and OT through the school. At this point we left both on her IEP until we can meet with the actual PT/OT to determine what type of work they will do with Mattie.

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Today I will leave you with a promise to update more and post more really cute videos.

Here is one from this week. Mattie threw her bowl on the ground so I picked it up and told her that if she threw it down again she would go to time out. She looked right at me, threw the bowl down and said “I wanna go to time out like Joba” and started laughing. So with my most serious (hiding my laugh) face, I told her “time out is serious, it is not meant to be fun but a punishment”. She answered back with “I wanna go to time out”. So she did 🙂

 

 

 

 

 

 

 

 

 

Thank You!

We wanted to take a moment to say thank you to everyone who ran, walked, volunteered, donated, and sponsored the 2nd Annual Run for Hope 5K and 1 Mile Event. With your help, this year’s race was a huge success! We raised over $4,000, all of which will go directly to Mattie’s therapies.

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Congratulations to the male and female winners of the race, Jonathan Bing and Lisa Vaile! .

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Mattie was there on race day, cheering on each runner as they crossed the finish line. She had a blast. After the event was over, Mattie and her dad went in the bounce house together. Her giggles melted my heart!

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Check out all of the fantastic pictures from the day HERE

Race results are posted on Cool Running HERE

Don’t forget to mark your calendar for our next event, The 2nd Annual Hope for Mattie Charity Golf Tournament and Dinner Banquet. It will take place at Heritage Harbor Golf Course in Lutz on November 8th, 2014!

We are always overwhelmed by people’s willingness to help us. Your generosity is greatly appreciated and goes a long way towards helping Mattie reach her potential. From our family to yours, thank you.

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2nd Annual Run for Hope 5K and 1 Mile Fun Run/Walk

We are just 2 months away from the 2nd Annual Run for Hope 5K and 1 Mile Fun Run/Walk!

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This year will be even bigger and better! We are excited to announce that we will be adding a Family Post Race Party with Music, Bounce Houses, Food, Raffles and More!

Even if you are not a runner, come walk the 1 mile in beautiful Lake Park or become a volunteer. Help us spread the word by sharing our event with family, friends, co-workers, and schools!

 For more info please click this link: RUN FOR HOPE

 To register, click the link below:

Register

 We are still looking for Sponsors Please email us at hopeformattie@yahoo.com or click HERE for more details. Sponsorship opportunities are available for as little as $50.

 Don’t forget, all proceeds from this event directly fund Mattie’s therapies!

 Everyday holds the possibility of a miracle!

 We hope to see you on April 12th!

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The year in review

One of the most difficult things about being the parent of a special needs child is that progress isn’t linear. There are periods of time when Mattie seems to be improving in leaps and bounds, followed by months of seemingly static capabilities. This result’s in a constant emotional roller coaster: feelings of elation when things are going well; and downright depression when they aren’t. You see, as parents our efforts don’t change, they are constant and all encompassing. Jess and I have devoted the vast majority of our time, money and energy to improving Mattie’s prognosis, with the hope that one day, these efforts won’t be necessary. But it’s difficult. Time seems to exist in snapshots, from one therapy to the next. And sometimes I get so caught up in what we’re doing, that I forget why we’re doing it.

The end of the year provides a fantastic opportunity to look back at the year and attempt to put our efforts, as well as Mattie’s progress, into some perspective. In 2013, Mattie was able to attend:

96 ABM sessions
20 Occupational therapy sessions
21 Speech therapy sessions
27 Early intervention sessions
10 Gymboree group visits
17 Hippotherapy sessions
4 Craniosacral therapy sessions
1 MNRI session

Wow! When we added all of this up, we were astounded. The logistics of getting to all of these therapy sessions was no small feat, and included 4 out of state trips. Mattie also went out of state in October for SPML surgery to reduce the spasticity in her legs.

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Gym Time

2013 was a great year for Mattie. At the beginning of the year, her primary mode of transportation was rolling around. This past year Mattie first learned how to army crawl, then later developed her “frog-hop” (patent-pending). Mattie also learned to sit up on her own, albeit in ways you and I wouldn’t even think about attempting. Mattie’s biggest progress this past year came in her language and cognitive skills. A year ago, Mattie could only say a small handful of words. Now, Mattie is capable of talking to you in 4 -5 word sentences. The other day when I came home from work for lunch, she exclaimed to the nanny, “I want to play with my daddy!” It was the highlight of my week.

Just recently Mattie has started to develop her sense of humor. One of her favorite games occurs when Joba jumps on my back. The conversation goes like this:

Me: Mattie, is there something on my back??!!
Mattie: Yes.
Me: What is it?
Mattie: A monkey. (with a big smile on her face)
Me: What’s the monkey’s name?
Mattie: Joba! (Both kids laughing hysterically)

2013 was also a busy year for the Hope for Mattie charity. We held our first major fund raiser in April, the Hope for Mattie 5K and 1 Mile Fun Run. This event was a huge success, with over 200 runners coming out to show their support for our daughter. Later in the year we had our second fund raising event, the Hope for Mattie Charity Golf Tournament and Banquet Dinner. Over 100 people participated on a beautiful fall day. Between these two events we were able to raise over $11,500; all of which went directly to Mattie’s therapies! We are currently in the planning stages for the 2nd Annual Hope for Mattie 5k and 1 Mile Fun Run, to be held on April 12th, 2014. This year we are adding a bounce house for the kids and a cookout for all attendees. For more information about participating in this event, CLICK HERE! If you would like to volunteer to help or to become a sponsor, email us at runforhopetampa@yahoo.com.

2013 was a great year for Mattie and our family. It was hard work, but Mattie has really made amazing progress. All of this is possible because of the support and generosity of our friends and family. Thank you all for being a part of Team Mattie! – Jim

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Sponsor-A-Therapy Week: Day 4 & Day 5

Day 4:

So, I am super behind in posting this… like a week. I just can’t get caught up on life sometimes 🙂

Tuesday is our “EI” day (early interventionist). During the hour she comes to our house, she works on Mattie’s cognitive skills, fine motor skills, speech, and just about everything else. Some things Mattie is working on are stacking blocks, matching, sorting, and pretend play. Sounds fun!!

Mattie’s EI recently helped us learn that Mattie has a hard time thinking “backwards”. What I mean by this is if you ask Mattie what noise does a cow make, she will reply “moo”. If you ask her what animal goes moo, she looks at you as though you lost your mind 😉 (even though she can say cow and point to a cow). I find this interesting that she can’t process this the other way. There are a few more examples that have the same result. So we are re-training ourselves to start asking things a different way… ahhh variation (an ABM principal).

We have been going back through some of the HELP milestones to assess what Mattie needs work on. Although I briefly went through it, I realized that Mattie is not as behind as I thought she was as far as cognitive skills. Gross motor… well, I did not even go there 😉

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Most days Mattie does music therapy. She spends time relaxing, looking at books, and even playing while listening to therapeutic music. Therapeutic Listening is an evidence-based auditory intervention intended to support individuals who experience challenges with sensory processing dysfunction, listening, attention, and communication. Since starting music therapy and speech therapy, Mattie has made tremendous gains in her speech. We are very happy with how she is talking these days!

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Day 5:

Wednesday’s are hippotherapy (horse riding). Mattie has really come to love riding on the horses and since her surgery, she is sitting up really well on the horse.

Equine movement provides multidimensional movement The horse provides a dynamic base of support, making it an excellent tool for increasing trunk strength and control, balance, building overall postural strength and endurance, addressing weight bearing, and motor planning. The horse’s walk provides sensory input through movement. The horses’ movement is similar to human movement patterns of the pelvis while walking.

Mattie goes to Quantum Leap Farm. For more info on hippotherapy, check out Quantum Leap’s website.

We would like to thank The Goodwin Family and The Kryk Family for sponsoring Mattie’s hippotherapy this week!

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If you are interested in sponsoring a therapy for Mattie, please click the link below. We will be doing another Sponsor-A-Therapy week in January!

As always, thank you for your continued support, love, and hope.

Sponsor-A-Therapy Week – Day 2 & Day 3

Day 2:

Sunday was our last day in Gainesville. Mattie completed another 2 ABM sessions. Sunday’s ABM sessions were sponsored by two of my best friends, Roxanne Anderson and Mindy Bennett!! Mattie was pretty tired after our weekend, as you can see 🙂

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If you are interested in learning more about ABM, here is a great video highlighting the ABM journey of Cypress, a boy with Cerebral Palsy.

Day 3:

Monday’s are always a busy day for Mattie. She has speech at 9am and then takes a Gymboree class. Today’s speech therapy was sponsored by Donna Ottmer. Thanks Donna!!!!

Since starting speech therapy 5 months ago, Mattie has had dramatic speech improvement. She has recently been saying 3 word sentences and her vocabulary has really expanded. Here are some my favorite quotes from her: “Where Joba go”, “Mattie farted”, “How you doin?”, “Jimi Cat come”,

We recently had a meeting with our early invention program and they approved speech therapy for Mattie. This means that the state will pick up the bill each week (until she is 3) moving forward!! Pretty cool!!

Here are some pics of Mattie at speech therapy and Gymboree class!

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I was not planning on adding a video but tonight Mattie was counting her “22 toes” it is pretty cute so I had to post 😉

If you are interested in sponsoring a therapy for Mattie, please click the link below. We will be doing another Sponsor-A-Therapy week in January!

As always, thank you for your continued support, love, and hope.