Author Archives: hopeformattie

Hope for Mattie Holiday Fundraiser

Posted on by
Reply
Yesterday we kicked off our Hope for Mattie Holiday Fundraiser!
In the spirit of the upcoming season, we have created the first ever Hope for Mattie Holiday Ornament. We are starting with a goal of 100 ornaments! All proceeds raised from the sale of the Hope Ornament go directly to pay for Mattie’s ABM therapy.
We also have a new Tote Bag and Keychain available to show your love and support in style 😉 Check out our new page by clicking HERE
Everyday holds the possibility of a miracle!
Thank you!!

Change for Mattie

Posted on by
3

Somehow, someway an entire middle school was able to raise $1,306.83 for Mattie. The amount is amazing. The day my mom told me the total, I was in shock. So many amazing people came together to make this happen. A special needs class civic project taught me more about giving then I have ever known. The thought of other special needs kids helping out Mattie is just amazing. What a beautiful lesson to be taught 😉

Jim recounts our experience:

Ms. Emison, a special needs teacher who teaches at WeightmanMiddle School, (the same school as Jessica’s mom – who is also a special needs teacher) started a civics project called “Change for Mattie”. The basic idea of the project was for the students to learn how they can and should always give back to their communities in some way, shape or form –  life lessons in community service! The students began by using the brainstorming process to learn how each student’s idea should go on the board without rejecting anyone’s idea.  Then they discussed the different ideas on the board to determine what would be the best idea for their civic project. Many of the students had seen pictures of Mattie after she was first born and knew about all of Mattie’s doctor appointments and therapies. So when Mattie’s name came up, the class had made up their minds to ask the rest of TEWMS to help them raise money for Mattie!

The entire student body was told that the class which raised the most money would be treated to an ice cream party where they would have the opportunity to meet Mattie. Each morning a video would play of Mattie. This video showed how hard Mattie worked to try and do what most children take for granted.  The students and staff pulled through from their hearts and piggy banks to donate, showing tremendous support for her and the classroom’s project. The talk on the campus was how much they wanted to meet Mattie, they weren’t interested in the ice cream!

One sixth grade girl especially took the challenge to heart. She went home and told her mom that she was going to help raise money for her new friend Mattie who couldn’t walk. The girl had her mom bring her to a local bakery and bought cookies. She then set up a stand in front of the cafeteria before school every day and sold the cookies at a profit. The little girl raised $78.00 for Mattie all be herself!

This past Friday Jess, Mattie and I headed to the school to accept the money the students, teachers, and administrators had raised and to participate in the ice cream party. When we arrived, Jess’ mom met us at the front desk and we proceeded to sign in. We had about 20 minutes before the ice cream party started, so we went to her classroom and had the opportunity to meet the children in her class. It’s really easy to get caught up in the everyday efforts it takes to raise Mattie. Meeting these kids with other difficulties really put things in perspective and reminded me to be thankful for the capabilities Mattie does have. My heart breaks for the parents of other kids with special needs and it is important to realize that while Mattie has her own difficulties, she also has a lot of things going for her and that not all kids are as well off as she is. This thought also extends to Joba and how lucky and blessed we are that he is healthy and fully capable of doing anything he decides to do in this world. I wish everyone could have an opportunity like this and to truly gain this perspective (the world would be a better place!)

We also had the chance to go to Ms. Emison’s classroom and meet her students. All of them immediately recognized Mattie from the posters that had been hanging around the school and the kids were all very excited to meet her. It was immediately clear that these kids had personally invested in the project; you could see it on their faces as soon as they caught a glimpse of Mattie. It was also very touching knowing that these kids were all dealing with many of the same issues that Mattie has or will be dealing with.

On the way to the cafeteria we had to walk across the school courtyard where hundreds of middle school aged kids had just been let out of lunch and were getting some fresh air. As we made our way across the courtyard we could hear the voices “Hey, there’s Mattie!” and “That’s Mattie!” We were quickly surrounded by scores of kids wanting to take her picture. It was great to see how excited all of the kids were to get to see Mattie-especially knowing how much effort they had all put in to help our little girl. She was a rockstar!

Once we made our way to the cafeteria, two classes of about 25 kids each were led inside. Several teachers and school administrators were there as well. Again, the kids were excited to see Mattie and were taking her picture, commenting on how cute she is. After everyone sat down, a young girl with cerebral palsy used her walker to come over and give us an amazing gift.

The girl who presented us with the check had told her parents about the fundraiser and they had also decided to come to the party. It was interesting to hear their perspective on raising their daughter and some of the difficulties they had overcome. They told us that Mattie had a lot of the same mannerisms as their daughter and that their daughter didn’t speak or walk until she was 6 years old. Everyone says not to compare kids with CP because no two kids or their circumstances are the same, but it is difficult not to. While it was exciting to hear a similar story as ours and where they are now, it also put into perspective the long road we have ahead of us. This is part of the emotional back and forth parents of a special needs child have to deal with.

Going to the school to see all of the kids was such an amazing experience and very uplifting! With all of the money these kids raised we have decided to bring Mattie back to the ABM practitioner in New York City that we had so much success with this past summer. Thank you Ms. McCallum, Ms. Emison, all of the teachers, administrators and of course, all of the kids for your amazing efforts! We are truly blessed to have you be a part of our journey.

* We took some amazing pics of the ice cream party but for privacy reason we are not going to post them… Instead enjoy some pics from my “photo shoot” with Mattie and her BIG donation check 😉

 

Follow Up

Posted on by
1

Mattie’s surgery went well. Tubes were put in both ears and her adenoid was removed by Mattie’s ENT doctor. After those procedures were done, Mattie’s general surgeon came in and removed a “mass” from her vagina (nothing to be concerned out). I figured since Mattie was going under for her ears, we might as well do a double surgery.

I got a little panicked after 35 minutes passed from meeting with the surgeon and they still had not called us back to see Mattie (the nurse said it can take 20-30 minutes for her to wake up). By 40 minutes, I was about to lose it. I sent Jim to talk to the nurse b/c I was about to be in tears. At 44 minutes, they finally called us back to go see her. Poor baby. She was whimpering as she was being held by a nurse. I took Mattie from the nurse and almost cried. It took a while for Mattie to open her eyes and for us to get a smile. We were in recovery for 30 minutes before we were allowed to go home. On the way home she puked but since then she has been a trooper. I have not noticed any change in her hearing, I guess time will tell. We follow up with the ENT doctor in 3 weeks to re-test her hearing. Thanks for all the positive thoughts and prayers!

20121011-075822.jpg

Another Opinion

Posted on by
Reply

Last week I was feeling nervous about Mattie’s upcoming surgery. I had opted to not get a second opinion, but of course at the last moment, I changed my mind. I was able to get in with another highly recommended ENT doctor. I took Mattie last Wednesday. Dr. H could not find anything wrong with Mattie’s ears. They looked fine!! In my mind I was saying “are you kidding me? What if I went through with this surgery for no reason?” Now more questions had to be answered. Dr. H decided to do another hearing test right on the spot. For the second time in 4 weeks, it was concluded that Mattie had hearing loss and her ear drums were not moving. Mattie’s eustachian tubes are not working property. Dr. H’s opinion: tubes in and adenoids out. I left there feeling better about this surgery. For peace of mind, it was the best $35 I’ve spent in a long time!

Mattie’s surgery is tomorrow at 9:45am. I know this is a common surgery for kids but I am still nervous. Lots of positive thoughts and prayers are needed. Please and thank you. 🙂

20121008-205926.jpg

The Price of Success

Posted on by
3

In a recent post we discussed the differences in traditional therapy (OT/PT) and ABM and the resulting clash of theories. The simplest way I can describe the difference is that the traditional theory wants a special needs child to mimic the development of a healthy child in milestones and timelines, while ABM focuses on the child’s current capabilities regardless of what they “should” be doing. This means that while OT and PT want us to put Mattie in the standing position on a regular basis, using her walker to practice walking, ABM doesn’t want us putting her into any position she can’t get into by herself, including standing. This dichotomy often puts us in a position of having to decide between the two theories and the multitude of therapists helping Mattie. This is not the only source of doubt and second guessing for Jess and I.

Like everyone, we have a finite amount of resources. While traditional therapies are covered by insurance, alternative therapies like ABM are not. There are other alternative therapies that we would like to try as well, cranial sacral massage (we did this for a while, stopped, now we are thinking of starting again) and hyperbaric oxygen therapy (HBOT) are two which we have discussed. In addition, there are some different types of surgeries and treatments which have been shown to help children with high tone/CP, as well as different orthotics-specifically a doctor on Long Island who makes customized AFO’s which some other parents we know rave about. This leads us to the question “is this the best use of our money?”

So far we have devoted most (if not all) of our money to ABM. We’ve done this because we believe in its benefits and we believe it has helped Mattie a great deal. This doesn’t mean that something else won’t help her, which is where the difficulty lies. As the money spent on ABM adds up and zero’s are added to the total amount we have spent, it is difficult not to second guess yourself. Would that money be better spent on HBOT? Is it worth the money to fly up to Long Island and get Mattie fitted for special AFO’s? Answering these questions becomes difficult when you realize that our resources are a zero sum game; spending money on a particular surgery is going to mean that we don’t have enough to go to the ABM center in California for therapy. More of one equals less of another.

For me, the questions and doubts can add up and sometimes result in feelings of guilt and inadequacy. As a father, I feel responsible for providing for the needs of my family. What kind of father am I if I can’t give my daughter everything she needs to have the most normal life possible (whatever that is)? What kind of man am I when I have to ask people-family, friends, even strangers-for money to help me take care of my daughter? This whole experience is incredibly humbling.

Jess and I are extremely lucky to have such a generous group of family and friends. We realize there are families out there with children that have more difficulties than Mattie and fewer resources to turn to for help. And so, at the end of the day we go to bed feeling fortunate. Fortunate to have such a large group of doctors, therapists, practitioners, family and friends to turn to for help. And ultimately, fortunate to have Mattie, secure in the knowledge that we have done everything we can to help our daughter, and will continue to do so.

Good morning Momma!

I am learning to get my legs underneath me…

and to lift myself up…

and to almost sit up, all by myself!!