The New Normal

Posted on April 25, 2014 by hopeformattie

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.

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.

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.

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!

Posted on April 23, 2014 by hopeformattie

We wanted to take a moment to say thank you to everyone who ran, walked, volunteered, donated, and sponsored the 2^nd 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.

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

Winners

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!

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 2^nd Annual Hope for Mattie Charity Golf Tournament and Dinner Banquet. It will take place at Heritage Harbor Golf Course in Lutz on November 8^th, 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.

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

Posted on February 14, 2014 by hopeformattie

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

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:

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 12^th!

The year in review

Posted on January 22, 2014 by hopeformattie

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.

Cold Wind

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 2^nd Annual Hope for Mattie 5k and 1 Mile Fun Run, to be held on April 12^th, 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

Mattie

Sponsor-A-Therapy Week: Day 4 & Day 5

Posted on November 27, 2013 by hopeformattie

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 😉

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!

Music

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!

Horse

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.

World Prematurity Day

Posted on November 17, 2013 by hopeformattie

Today is World Prematurity Day. I keep seeing picture after picture of so many amazing kids who beat the odds. It is pretty cool to see 🙂 Mattie was 9 weeks early, born at 31 weeks. With only a 23 days stay in the NICU, we were hopeful.

Here is a pic of Jim holding Mattie’s hand when she was 4 days old.

In honor of World Prematurity Day, March of Dimes is offering two kangaroo plush beanies for just $20, including shipping. From their website: “We’ll send you one to keep and we’ll send the second to a family in a newborn intensive care unit (NICU). By sending a beanie, you help spread the word about the important health benefits of kangaroo care. You also bring a little bit of comfort to a family during a difficult time.”

As I look back and remember those difficult days, I remember when those little acts of kindness made the world to me. If you would like to read about the day Mattie was born CLICK HERE. The 9 weeks that followed with her in the NICU, coming home, and then back to the hospital with pneumonia follows.

Tonight my thoughts and prayers are for all the babies, moms, and dads who are currently going through this. Sending love your way. XOXOXO

Whirlwind

Posted on October 27, 2013 by hopeformattie

The Hope for Mattie Charity Golf Tournament was an amazing success! We raised over $6,500 for Mattie. Every penny raised will go to fund her therapies. We owe a HUGE thank you to all those that participated, volunteered sponsored and donated. We are forever grateful for your generosity. Mattie’s success is a direct reflection of your support. Thanks for being on her team!

The pics from the event are posted here: https://hopeformattie.shutterfly.com/

We hope to see everyone back next year!

Now for an update 🙂

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I asked Jim how he was holding up last night and he just looked at me and grunted, which was probably the most appropriate response if someone asked me the same thing. It has been a crazy few weeks.

In 16 days we accomplished: running a 100 person golf tournament fundraiser for Mattie, a 3 day trip to Texas for surgery, a 4 day trip to NYC for therapy, followed by moving the day after we got home from NYC. It has been pretty stressful. We have managed not to kill each other…yet. We said goodbye to our old house with a late night jump in the pool. It brought back many great memories. I will miss that house but we must move on. So here is an update from the past few weeks.

Our whirlwind trip to Texas for Mattie’s surgery went well. The day before surgery we met the surgeon and discussed everything in detail. He wanted to release Mattie’s lower legs which had not been the plan. He thought her ankles were very tight. Mattie’s foot doctor in NY, just 5 weeks prior, said that Mattie had the most flexibility in her ankles he had ever seen in a kid with CP with no surgery. Surgery on her lower legs would mean Mattie in casts for 4 weeks! I was seriously not prepared for this and had to hold back tears toward the end of the appointment. As we walked out of his office, I had tears coming down. How can 2 doctor’s opinions be so different in just 5 weeks? Could Mattie’s ankles become that much tighter in that short of time? The surgeon had me feel her ankles and he was right, but Mattie’s tone/tightness can fluctuate sometimes… How will we handle Mattie in casts? How will Mattie do in casts? I am not good with sudden changes of plans, so I felt overwhelmed and confused. I called Jim from the car and he told me to call Dr. Jordan in NY. I didn’t want to bother the doctor and I knew his office was just about to close, but I called anyway. Dr. J spoke to me for almost an hour. His kind, slow demeanor really helped me to understand a little more about the surgery. He reassured me that Dr. Yngve was fantastic and that if Mattie had tone that day in her ankles she might not the next day and Dr. Y would see that and adjust accordingly. Dr. J also said that we could use Mattie’s AFO braces that he had made in August instead of casts. Also, Dr. Jordan was going to call Dr. Yngve as soon as I got off the phone to discuss Mattie. Yes!!! Man I love Dr. Jordan, he is truly amazing! I was feeling much better about this change in plan. That night I took my mom and Mattie to my favorite Texas steakhouse 🙂

SaltGrass

The next morning we had to be at the hospital at 11am. Mattie went into surgery around 12:35. Surgery was to take around 1 – 1 ½ hours. At 1:37 Dr. Yngve came out to tell us that Mattie did really well and he was able to use her AFO’s instead of casts. Yea!!!!!! Now the wait to go back to see Mattie started. We could not go back to see her until she woke up. After an hour I was getting panicked. I had my mom go check in with the nurses and within 10 minutes I was finally able to go back and see her. She looked good. She had on huge knee immobilizers so I could not see where any of the incisions were. 20 minutes later we were upstairs in her room and discharge would be in an hour. Before Surgery

Once we got back to the hotel Mattie kept saying that she wanted to play on the floor. Talk about a quick recovery! The next day we flew home. Here is Mattie taking up the entire queen bed with those knee immobilizers!! Bed Hog

Mattie had 5 days home to recover from surgery before heading to NYC for 8 ABM sessions. I had 5 days to catch up on work and pack my house! Mattie is wearing her AFO’s 24 hours a day and using the knee immobilizers at night while she sleeps. We were concerned that Mattie had lost some of her abilities since surgery. She could not get into a W sit nor was she crawling, but she was able to long sit for the first time.

I was not too concerned as another mom I spoke with had the same things happen. I think Mattie had been using her tightness to move then suddenly she has all this flexibility and range. She was not sure how to move anymore. It was a little upsetting to see her get frustrated and just lay on the floor but I had faith that she would figure out new and better ways to move. This is why ABM sessions were important to have done right away. So off we go. This time it is my Mother-in-law (aka Grandma), Mattie, and I taking on NYC with 4 suitcases, 3 carry-ons, a cooler, car seat, and stroller. I am sure we were a sight to see! I wish I had a picture 🙂

Hello NYC!

UWS how I have missed you. (for you non-new Yorkers – UWS – Upper West Side). I fall in love with this area more and more. Day 1 we squeeze in 2 ABM sessions and dinner with my good friend from Long Island. We take Mattie with us. Mattie can’t sit in a restaurant high chair (not a high enough back) so we cart a portable high chair around everywhere we go. This time I leave it back because the other day after surgery Mattie was sitting up really good in a shopping cart, not even using the back, so I wanted to give the restaurant high chair a try. I put her in it and WOW! She can sit up with no issues. With her legs more relaxed, she can sit more on her butt. It was so fantastic to see!! Good bye carting around a portable high chair!!!

Day 2: ABM in the am and pm. Mattie is doing well but Marcy says her back is very tight. We take off her AFO braces during the sessions and Mattie is able to move a bit better. She is not used to wearing them so I feel like it really restricts her movements. Mattie is still having trouble with her right leg. It does not seem to be as loose as the left leg. After ABM, Mattie and I take a walk to Central Park and stop by the playground but it is swamped with kids… maybe tomorrow.

Leaving Marcy's

Day 3: Mattie is getting better movement and has been able to get into a side sit. Her back is releasing a little, and she is able to stand up a bit taller then she had been after surgery. After ABM Mattie and I take another walk up to Central Park, this time we take another route and go by the Museum of Natural History. Along the way I see a ton of people on benches eating…. Shake Shack. Hmmm what is this Shake Shack?? Why are like 20 different people eating it?? I must go check it out! We turn around and wait in a ridiculously long line, $10 later I am eating the best cheeseburger EVER (it has been a long time since fast food cheeseburgers) and Mattie and I are sharing some fries, on a park beach, in the middle of New York City…. Ahhh this is the life… granted it is only 3:30pm, and I am not sure why so many people are randomly eating Shake Shack at 3pm, but somehow it feels like the right thing to do 🙂

That night I take Mattie and Grandma to Rosa Mexicana. We go early as to not annoy everyone that we are bringing a 2 year old to a nice restaurant. Mattie does fabulously, as always, and I get my guac fix 🙂

Day 4: 2 more early ABM sessions before taking a cab to catch a 4pm flight home. Mattie did not nap between them so I was worried that the last session was going to be a waste. Mattie was super tired and almost burned out. This ended up being her best sessions so far! Mattie was able to get into a W sit! Marcy went over some stuff to work on at home and we said our goodbyes. Until next time UWS… See you when it gets warmer!

Overall the trip to NYC was exactly what Mattie needed. She is moving better since we have been back home. She feels better in my arms and her back is looser. She is W sitting again and is crawling army style. I think once she feels a bit more comfortable in the W sit we may see her frog-hop-crawl move again or even better, a real 4 legged crawl. She is able to long sit and side sit, which she has never done before. She is standing up really well compared to the first few days after surgery.

Side Sit

Hi!

We go back to Gainesville for ABM sessions in a few weeks. This will give Mattie some time to integrate what she learned in NYC. Today at hippotherapy, Mattie sat up on her horse for the first time with a straight back. Check it out! Yes… I cried.

Hi Horse

This surgery is going to open up a ton of new possibilities for Mattie. I can’t wait to see what the next few months bring. Thank you again for everyone who sent us good thoughts, prayers, and love. Everyday hold the possibility of a miracle!

Ultimate Goal

Posted on September 30, 2013 by hopeformattie

It has been 5 weeks since we have been back from our trip to New York. Jim, Mattie and I flew into Long Island to have a consult with Dr. Jordan about Mattie’s legs, SPML surgery, and the possibility of getting custom AFO’s made. Dr. Jordan has come highly recommended and I was excited to finally meet him. We had a 2 ½ hour consult with Dr. Jordan and his wisdom and insight is truly remarkable. We were able to cast Mattie for custom AFO’s since Dr. Jordan did not believe she would need surgery below her knees. Here is a pic of Mattie doing music therapy & wearing her new AFO’s.

Mattie

After the doctor appointment we hopped into a rental car and drove up to Albany to pick up Joba and my mother-in-law from the airport for 4 days of camping in their mountain home. It is a trip we all look forward to each year; a chance to unplug, catch up with family and friends, and just be stress free for a few days.

After 4 days at the camp, we headed back down to Long Island to pick up Mattie’s new AFO’s before taking the train into Manhattan for 6 ABM sessions with Marcy. Mattie did really well with her ABM sessions. Marcy was able to get her into criss-cross sitting and side sitting after the first session. Jim went to a few sessions with Mattie (since I had Joba) and Marcy was impressed with his ability to play with Mattie in ways which allowed Marcy to get some good ABM work done 🙂

We were able to do 18 ABM sessions in 6 weeks between the New York trip and 2 trips to Gainesville before and after. The results of these 18 sessions are pretty impressive. Mattie has been able to pull up to a stand and she started to frog-hop-crawl. I think it might be her signature move. It is pretty cute to see. Check it out for yourself!

In this short clip, Mattie surprises us by coming up into a stand the day after returning home from NYC.

Jim and I had gone back a forth about having SPML surgery hundreds of times. We kept getting different opinions on it and I knew that whatever Dr. Jordan had to say would be the final decision in my mind. We had started the process of speaking with the two SPML surgeons but no date had been set. It was a reassuring feeling to get Dr. Jordan’s approval and input on just how much this surgery can help her. Here is a little info about the surgery and why it is the option we are choosing for Mattie.

So… the surgery is right around the corner… like in 8 days!!!!! My mom, Mattie, and I are flying to TX next week. Her surgery is October 9^th. It is an outpatient procedure and we will be coming home the next day. The very following week we are heading back to see Marcy in NYC for 8 ABM sessions. It was important to me that we see Marcy right away since Mattie will have new use of her legs and she needs to learn the correct way of using them. Marcy has seen many kids right after surgery so I felt like the surgery followed by ABM sessions with Marcy went hand in hand. We lucked out in that Dr. Yngve accepts our insurance so the surgery will be paid 100% by insurance and the rest of the trip is being funded by Hope for Mattie donations! (thank you 1,000,0000 times over!)

So with our Hope for Mattie Golf tournament coming up this weekend, surgery the following week, and then back to NYC the week after, I am feeling a little stressed out. Then I get the email that topped everything off….

I am sitting at a red light checking my email and I see that the email we have been waiting almost 2 years for, is sitting there. I quickly scan the email and call Jim. I have tears in my eyes and as he answers I ask him if he has seen the email. He has and I start crying harder. I am not sure why I am this emotional. I had not cried like this in a long time. I knew this day was coming. The timing is horrible. I wanted to throw up.

Our short sale was approved and we have to close by October 25^th and move out before that. We have nothing packed and no place to go. I will not even be in town 2 of these weeks and we have a 100 person golf tournament / banquet dinner in 6 days!!!!!!! Are you kidding me??? Seriously???

Breathe in. Breathe out. Listen to Dave. Call my sister. Put on my big girl pants. Say a few prayers. Hug Mattie… Mattie.

That girl knows just how to calm my heart and my head. Her smile is addictive. Her personality has been shining. Her vocabulary is expanding. She is getting better maneuvering her wheelchair. All of her therapists are very happy with her progress. There is a lot to be thankful for. I am really looking forward to the weeks after the surgery to see just how much it will help her move forward. I find myself having high expectations, but I know how detrimental that can be so instead I will have faith that we are making the right decision and hope that this surgery is one more step toward our ultimate goal of Mattie walking.

Hope For Mattie

Everyday holds the possibility of a miracle

Tag Archives: Cerebral Palsy