Tag Archives: Milestones

The year in review

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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 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

Mattie

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A diagnosis is not a prognosis

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A diagnosis is not a prognosis. I can’t tell you how many times I have repeated this 6 word sentence. Mattie’s Neonatologist told us this when we were called into his office the day we learned Mattie had PVL (brain damage).

As Mattie grew and failed to meet milestone after milestone, I would almost chant these words in my head each time I saw her struggle to do things that she “should” be able to do. I have always believed that with hard work and perserverence anything is possible. I started to doubt these words I lived by.

How can Mattie sit, stand, or walk if her brain does not know how to tell her body to do it? Each time Mattie struggles to sit up or buckles to her knees when stood up is a consistent reminder of her diagnosis. Wait – a diagnosis is not a prognosis. So we push on. Mattie pushes on.

Then something incredible happens, Mattie accomplishes a new milestone! I think to myself, a diagnosis IS NOT a prognosis and with hard work and perserverence anything IS possible!

Until… the next time I start to have doubts and then this ridiculous cycle starts over again. But today is the day. The day that I promise myself and her that I will no longer question or doubt our decisions as far as what therapies we do, how often we do them, or wondering if we are doing enough, because I can only do what feels right to me and what feels right to Mattie. Progress is progress no matter how we get there or in what time frame we get there.

Mattie continues to prove to me that I was right; with hard work and perserverence anything IS possible! Check it out for yourself. Mattie has learned to sit up on her own!

Mattie Sits

Perseverance and Determination

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Every now and then I get sucked into the milestone checklist. I did it today. Mattie just turned 15 months old. When we adjust for her prematurity that technically puts her at a 13 months old level. So I decided to look at the 1 year milestones again since I have given her a few months to “catch up”.

What most children do at age 1:

Social and Emotional

  • Is shy or nervous with strangers – Yes
  • Cries when mom or dad leaves – Yes
  • Has favorite things and people – Yes
  • Shows fear in some situations – No
  • Hands you a book when he wants to hear a story – No
  • Repeats sounds or actions to get attention – No
  • Puts out arm or leg to help with dressing – No
  • Plays games such as “peek-a-boo” and “pat-a-cake” – No

Language/Communication

  • Responds to simple spoken requests – No
  • Uses simple gestures, like shaking head “no” or waving “bye-bye”  – No
  • Makes sounds with changes in tone (sounds more like speech) – No
  • Says “mama” and “dada” and exclamations like “uh-oh!” – No
  • Tries to say words you say – No

Cognitive (learning, thinking, problem-solving)

  • Explores things in different ways, like shaking, banging, throwing – Sometimes
  • Finds hidden things easily – No
  • Looks at the right picture or thing when it’s named – No
  • Copies gestures – Sometimes
  • Starts to use things correctly; for example, drinks from a cup, brushes hair – No
  • Bangs two things together – No
  • Puts things in a container, takes things out of a container – No
  • Lets things go without help  – No
  • Pokes with index (pointer) finger – No
  • Follows simple directions like “pick up the toy” – No

Movement/Physical Development

  • Gets to a sitting position without help – No
  • Pulls up to stand, walks holding on to furniture (“cruising”) – No
  • May take a few steps without holding on – No
  • May stand alone – No

So we failed…pretty miserably at that. It is not surprising but it still hurts. I want to make sure that I am doing everything I can. So I read A LOT, I ask A LOT of questions, and I try and learn from other moms who have traveled this path already. I know we posted a video of Mattie taking steps, and yes we are very excited that she has the concept down of one foot forward, but she is no where near close to walking. She can’t even sit up or crawl! I think she gets frustrated too. When she is lying down on the floor, she struggles to sit up and I can see the determination in her face but time after time she fails, then she gets frustrated and starts to cry. It is heartbreaking to watch.

It is almost incomprehensible how easy it is for us to move yet it is so hard for her. Language/Communication is starting to play a bigger role in our lives. We have been doing sign language with her. Basic signs like eat, more, milk, bath… but she has not used any of them. She babbles more and more each day, but nothing like what she should be doing…. Ah there I said it “should be doing”. Damn these milestones charts and should be’s… I hate it but every now and then I need a reality check. It is not always butterflies and rainbows. This is the cold hard reality that I sometimes have to check myself with in order to keep moving in the right direction and persevere. Hmmm…

Persevere: to persist in anything undertaken; maintain a purpose in spite of difficulty, obstacles, or discouragement; continue steadfastly.

Determination: the refusal to let anything prevent you from doing what you have decided to do

Maybe with Jim and my perseverance and Mattie’s determination we will one day be able to cross off every one of these stupid 1 year old milestones!

Steady as we go my friends.