World Prematurity Day

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.

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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

Sponsor-A-Therapy Kick Off & Day 1

Today kicks off the Hope for Mattie Sponsor-a-Therapy Week. Each day we will be highlighting the therapy, who sponsored it, and a picture of Mattie.

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.

Day 1

We are currently in Gainesville with our local ABM practitioner, Josie. We have been making these trips for almost 2 years! ABM (Anat Baniel Method) is Mattie’s main form of therapy. We have posted a ton about it so click this link ABM – to see what we have had to say and follow Mattie’s journey of learning to move.

We are grateful to have Mattie’s Nana, Ileana McCallum and one of my best friends, Rachael Garzaro sponsor todays ABM sessions. Thank you Ladies!!

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Whirlwind

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/

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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 🙂

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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. 20131025-124719.jpg

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.

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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.

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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

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.

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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 9th. 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 25th 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.

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Hope for Mattie Charity Golf Tournament – October 5th

Hope for Mattie

The first ever Hope for Mattie Charity Golf Tournament and Banquet Dinner is taking place October 5th… a few weeks away!

All the proceeds raised from this event directly benefit Mattie.
Want to help make the tournament a giant success and ensure Mattie gets the therapies she needs? We need players! Help get the word out by inviting your friends, family and coworkers to participate. Individual players and groups are welcome.

 Not a golfer? No Worries! Come out for the banquet dinner and spend the evening supporting Mattie. Raffles, a silent auction and music guarantee a great time for everyone!

 Thanks to some very charitable sponsors, we have a ton of individual golf prizes to win and items to raffle off, including golf bags, golf clubs, football tickets, restaurant gift certificates and so much more!

For more details about the event or to register, click here:

Hope for Mattie Charity Golf Tournament

If you are interested in sponsoring this event, we have a few sponsorship spots left. Email us at hopeformattie@yahoo.com or fill out the sponsorship form HERE!

Mattie