Wordless Wednesday
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Wordless Wednesday
Reaching Our Goals – One Milestone At A Time
It is not easy for me to ask for help. In fact I hate it. I know Jim feels the same way. So for us to make the decision to put ourselves out there to our family, friends and strangers was no easy decision. I knew we had to if we were going to give Mattie the help she needs. Hope for Mattie was a small idea that I never thought would grow to what it is today. We kicked off Hope for Mattie almost 6 months ago and the response has been overwhelming. It brings tears to my eyes just thinking about it. It is truly amazing. I have thanked you countless times, but countless times is not enough in my eyes. We are truly appreciative for the outpouring of support and love that has been shown for our daughter.
We know these are difficult financial times for everyone, but I wanted to share with you just how wonderful you all are and how thankful we are. To date, Mattie’s Signature Jewelry Line has been a HUGE success. HUGE as in 135 pieces of Hope have been purchased! Every penny that is donated to Mattie, whether it be in jewelry sales or direct donations, goes directly into Mattie’s bank account. The money is used for the sole purpose of paying for her therapy and travel. So far Hope for Mattie has funded 21 ABM sessions (1 NYC trip and 8 Gainesville trips), 15 cranial sacral sessions, and 23 physical therapy sessions!
The fall fundraiser that we were working on is not going to happen this year. I am disappointed by this but it has opened up other events that Jim and I are excited about! In the works for next year are a 5K race / 1 mile fun walk and a golf tournament / dinner. We really want to be able to take Mattie to the main ABM therapy center in March of 2013. We have estimated the cost of this trip to be $5,000 – $6,000. So to replace the fall fundraiser, we are going to unveil a new online fundraiser (in the coming weeks) to help fund the ABM sessions we have scheduled this year as well as the ABM trip in March.
Jim and I are currently working on our next Hope for Mattie post that is called “The price of success”. This post details our thoughts on ABM, the costs, the success Mattie has had with it, and your involvement in her success. Every milestone Mattie reaches is because of your help. We are in this hand in hand. You are helping us give the best life we can to our daughter and for that we are eternally grateful.
Wordless Wednesday
Muffled
Last week I posted on Facebook that Mattie was going to be able to cross another doctor off her “amazing long list of doctors and specialists”. Umm I was wrong. Mattie did not pass her hearing test last week. The beginning of the test was fine, but when the softer tones started, she was not responding. I knew it right then since I was holding her in my lap. It was both shocking and frustrating. My first thought was that fluid was in her ears although she had no symptoms of being sick or having allergies. Her eardrums were not vibrating and moving like they should. As soon as I left the audiologist, I called our pedi to try and figure out what was going on, and went in the following day. We started Mattie on allergy medicine (in case that was the cause) but I knew in my gut that it was something else and called the Ears, Nose and Throat doctor and made an appointment.
I read the audiology report from last week while at the ENT doctor, who by the way, was just added to the “amazing long list of doctors and specialists”. Hearing Loss. I knew she failed the hearing test, but to see it written down on paper for some reason just makes it real. Before I go on I will let you know that yes, Mattie can hear. Whatever is going on is making it so that Mattie hears muffled tones. It was explained to me as needing to pop your ears (like when on an airplane or high altitudes) but not being able to pop them. …
X-rays were taken and the recommendation is to have tubes placed in both ears and to remove her adenoids as well. Apparently Mattie has negative pressure in her middle ear which is causing the hearing loss. Putting in tubes will allow her to hear clearer and removing the adenoids is a longer term solution.
Now the question on my mind is how could I not have realized there was an issue? The ENT Dr mentioned that she breathes through her mouth and asked if this was common… ummm crap, no, I haven’t noticed! Should I have? I never really paid attention to that or to anyone’s breathing characteristics. None of the doctors on the “amazing long list of doctors and specialists” has ever mentioned this to us. She passed her hearing test this time last year. How long has this been going on? So this gets me to thinking… could this be why she does not talk?? Why she is verbally behind?? I am grasping at something, anything to make me feel like there could be a solution besides the normal “she has CP, she was a preemie, lets wait and see” comment that we get ALL THE TIME.
Soooo heading in for surgery in October 😦
Wordless Wednesday
Wordless Wednesday
What exactly is cerebral palsy? How does this effect Mattie?
Today is World Cerebral Palsy Day, the first one of its kind. To me this is a day to spread awareness, love, and hope. I know that most people don’t know what cerebral palsy really is. Heck, I didn’t really know until Mattie was diagnosed with PVL.
Mattie has been diagnosed as having moderate spastic diplegia cerebral palsy. Broken down this means that Mattie has brain damage that affects the way her brain controls the muscles of her body (cerebral palsy). Mattie’s legs have a tendency to be tight and stiff, which can limit movement. Her arms and hands are normally loose but the range of motion in her arms are limited (spastic diplegia).
What does this mean to me, us, her…
Mattie still can’t sit up, crawl or walk (she is 1 yr 5 mo old), but she is a bad ass roller! Her smile is infectious and when she blows me a kiss my heart melts a little. She works hard everyday learning and becoming more in touch with her body. This girl is one tough girl. I know our perseverance will rub off on her. We teach each other to be kind, compassionate, strong, courageous, ambitious, and hopeful. We take things one day at a time, one milestone at a time. We are learning and growing as a family with love and a little girl leading our way.
So… take a moment to read a little about CP
What is Cerebral Palsy?
Cerebral Palsy is the name given to a condition which affects the way the brain controls the muscles of the body. This results in difficulties in movement and posture. Cerebral Palsy has different causes, and affects each person differently.
What causes Cerebral Palsy?
Cerebral Palsy is the most common physical disability in childhood. It is estimated 10,000 babies born in the US each year will develop Cerebral Palsy and that 764,000 children and adults in the United States have one or more of the symptoms of cp. The condition is not hereditary and there is no cure. Many causes of cerebral palsy are still not known or understood. Injury or changes to the developing brain are associated with Cerebral Palsy.
Is Cerebral Palsy curable?
There is no cure for the developmental brain damage that causes Cerebral Palsy. Therapy, however, can help improve muscle function and coordination. Studies have found that children who receive early therapy are more likely to lead a more typical and improved quality of life. Recent advancements in neurological studies have vastly expanded knowledge of brain plasticity (the brain’s natural ability to form new connections in order to compensate for injury). Scientists have learned that the brain continues to reorganize itself by forming new neural connections throughout life.
Common Characteristics and Types:
– Persistence of primitive reflexes
– Involuntary movement
– Disturbance in gait and mobility
– Muscle tightness or spasticity
– Impairment of sight, hearing, or speech
– Seizures
– Difficulty in swallowing, feeding and problems with speech
– Learning and intellectual disabilities
– Abnormal sensation and perception
Cerebral Palsy can be grouped into three main types.
Spastic CP is the most common type of CP. Spastic muscles are tight and stiff, which limit movement. Spasticity may be very mild and affect only a few movements, or very severe and affect the whole body.
Athetoid is characterized by tremors, unsteadiness, lack of coordination, and constant movement. About 10% of children with cerebral palsy have this type.
Ataxic CP is the least common form of cerebral palsy. Ataxia means having a lack of balance. They usually have low muscle tone, a staggering walk and unsteady hands.
Specific words are used to describe the parts of the individual’s body that are affected.
Diplegia: Both legs and both arms are affected, but the legs are significantly more affected than the arms.
Hemiplegia: The leg and arm on one side of the body are affected.
Quadriplegia: Both arms and legs are affected. The muscles of the trunk, face and mouth can also be affected.
(source: United Cerebral Palsy: http://www.ucp.org/)
“World Cerebral Palsy Day, on September 4, 2012, is the world’ first! It will change the lives of people with cerebral palsy (CP). The theme for this unique day is ‘Change my world in 1 minute’. There are 17 million people around the world with cerebral palsy. A further 350 million people are closely connected to a child or adult with CP.
This website is a forum for people with cerebral palsy to express what they need to make their life more independent or more rewarding. The website also gives people with CP the opportunity to make these ideas a reality.”
Please go check it out here: World CP Day
Mattie and Joba taking part in Hope for Mattie’s World CP Day fundraiser!
Wordless Wednesday
New York, New York
Jim:
At the end of our family vacation in Albany, we placed our son Joba on a plane with his grandmother and headed to NYC for 3 days of ABM intensive therapy sessions with Marcy. Marcy is one of the most advanced ABM practitioners we have brought Mattie to for therapy.
Jess:
We stayed 2 nights and had 5 sessions with Marcy. Marcy has come highly recommend by several other moms and of course our local ABM practitioners. Jim and I were not sure what we were in for but we knew that we had to take Mattie to see her. This trip was well beyond our means and it was only able to happen thanks to all the amazing people that have helped us on this journey.
We stayed on the Upper West Side of Manhattan. I was excited to stay in this area since it was a new area to me. I loved everything about it. It was very residential. We were a block from the Fairway Market which has an entire 2nd floor dedicated to only organic food (I was in love). We were a few blocks from central park and could walk to each ABM session. Our plan was to avoid the subway, buses, and cabs. We knew that Manhattan is not very handicapped friendly as far as transportation goes, so we wanted to be able to walk everywhere we needed. This trip was for Mattie and not for us, so the extent of our sightseeing was Strawberry Fields in Central Park. It was perfect.
Jim:
We arrived on a Thursday and our first ABM session was scheduled at 4 in the afternoon. Typically Mattie is a lot more manageable in the morning and Jess and I were concerned that being in the car for the 3 hour drive to the city would render the session useless. Upon arrival, Mattie immediately connected with Marcy’s calm demeanor and enthusiastic encouragement. I was amazed at how calm Mattie was while Marcy gently moved her and studied her overall movement patterns. Marcy asked a lot of questions regarding Mattie’s previous experiences with ABM as well as the different things we did with her in traditional OT and PT therapies. While we talked Marcy continued to push and prod (for lack of better terms!) Mattie in different ways until, quite suddenly, the range of motion in her hips drastically increased. To our amazement, in that first session Mattie was able to sit “cross legged” or “Indian style” (I know that’s not a PC term, but I don’t know what else to call it) for the first time!
Jess:
We had been working with her sitting in the “W” position so I think that coupled with this ABM session, her brain made a connection. It was amazing to see this WOW moment. Jim and I left there that day with a spring in our step. We knew big things were going to happen on this trip.
Jim:
While waiting for the elevator to leave, Jess and I decided we had to find a way to get Mattie back to see Marcy again in the future
The remaining sessions were very similar to the first. Mattie’s connection with Marcy was amazing to witness. Mattie was fully aware of what she was doing, you could almost see her actively learning. She was calm and her movement was more fluid than usual. In one session Marcy worked on Mattie’s back, ending with Mattie being able to sit more upright and with more balance than usual. In another, Marcy placed Mattie on her back and encouraged her to push off her feet in order to move her body along the table in the direction of her head. She not only was able to do this but was able to lift her pelvis off the table in the process-another form of movement Mattie had never experienced.
Jess:
We left there with lots of new information and some new things to be doing at home with Mattie. Now the question that comes to mind is how can we get back there??? Even two weeks later, Jim and I are still excited to see the changes in Mattie.
Jim:
Mattie has continued to show improved range of motion in her hips, which in turn has allowed her to increase her balance while sitting. She has also continued to lengthen through her back and has started to avoid some of the small, improper movement patterns caused by her high tone.
Jess:
It goes well beyond these movement milestones. Mattie’s cognitive skills have really emerged the past month. Mattie can now blow kisses, claps her hands, knows where her toes are and gets them, and as of this week I think she is signing the word ‘more’.
Jim:
She has been copying people’s movements and sounds a lot more lately. She regularly waves to people (whether the timing is appropriate or not) and just yesterday she tried to clap her hands while watching us do so. She has also been mimicking the sounds we make and has finally been able to say “mama”, although indiscriminately.
Jess:
(my heart melting).
I am confident that we are on the right track with Mattie. It is hard to deny the changes that are happening to her. It is a combination of ABM, traditional therapies, having a fantastic nanny, and huge amounts of love and dedication from us, our family, friends, therapists, practitioners, and perfect strangers.
Jim:
These recent improvements in movement and cognition have really made it an exciting time in Mattie’s life and I feel so fortunate to have the opportunity to be a part of it.
Jess:
As I sit here in Gainesville finishing up this post (yes we are back for more ABM), I reflect on just far we all have come. Jim and I have both grown, not only as parents but as individuals looking for answers and finding them in a little girl who lights up our heart with her smile. Although this may not be the path I would have chosen for myself, I know it is the path that I was meant to take.
Hope For Mattie 