Rolling Along

When Jess told me that she had signed us up for a wheelchair fitting, my first reaction was to resist. I thought up several excuses in my head why Mattie didn’t need one. She was too little-she won’t know what to do with it-we will use it as nothing more than a glorified (expensive) stroller. Then I started to think about what it meant. People would know something was wrong with her. More importantly, I could no longer deny that something was wrong with my daughter. It would be a monstrosity – a constant reminder of the difficulties we had faced and the hurdles that lie ahead. However, the fact remained that it was getting more and more difficult to transport Mattie as she continued to grow. Her inability to move on her own was also keeping her from interacting with other kids. It hurts my heart to see her lying on the ground, stuck watching her cousins and her brother run around, squealing and jumping and playing, knowing that she has no way of participating. Jess and I talked about all of this, and I reluctantly agreed to look into buying her a wheelchair.

The day of the fitting, I left work with my head full of negative thoughts and expectations. When I got home, I walked in to find Mattie sitting in a wheelchair wearing the biggest smile on her face! She was happy. Just as important, she was using it correctly-all by herself! She whizzed back and forth until she rammed into a wall or a cabinet. We would then turn her around, only to watch her take off again. It was as if she knew what she was doing. She loved it! Seeing her so happy was a shock and I immediately realized that I had thought about this all wrong. I stopped worrying about what a wheelchair meant and started thinking about all of the things Mattie would be able to do with it. She could play outside. She could play with others. She could chase her brother!

As I sit here now, I can’t wait for the wheelchair to arrive. I’m excited to have it specifically fitted to Mattie and see what she can do! This could really be a good thing for her….Sometimes a little perspective goes a long way. Check out her video from the wheelchair fitting:


A diagnosis is not a prognosis

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

Mostly Smiles

The progress Mattie has made cognitively the past 6 months is so significant I sometimes can’t even believe it myself. Mattie was not even talking last November. She finally passed her hearing test in December (on my birthday) and has made so much progress. She has at least 50 words she uses along with 20 signs she still uses. I can almost breathe a sigh of relief knowing that she is progressing cognitively. We are still asking her to answer for everything rather then assume we know what she wants. She will respond with a “yea” or “no” but as of this week is finally using the word Yes.

We finally received our “GAP Insurance Exception” for speech therapy which means the price is now $20 a session. So as of a few weeks ago Mattie is doing speech therapy 1x week. I am happy about adding speech back into our program. In just the few weeks we have been having speech therapy, Mattie’s speech has already improved.

Mattie continues to see her OT once a week as well as her EI (early interventionist). A few weeks ago we had our consult with hippotherpay, which is a type of PT done on a horse. Riding a horse imitates the same movement we have for walking. We have been waiting for Mattie to turn 2 to try this type of therapy out. I will say that Mattie looked really good on the horse. She was sitting up much taller than I thought she would. The PT in charge of the program thinks Mattie will do really well so we are going to be adding this to her program once a week. I am hoping that Mattie will gain some balance and improve her core muscles.

Riding Hi!

This is a summary of Mattie’s week:

Monday – Speech

Tuesdays – OT and Library Toddler Group

Wednesday – (something will be added here soon)

Thursday – Hippotherapy

Friday – Early Interventionist/Cognitive Play

Sarah, Mattie’s amazing nanny, still does our home program each day with her along with these “extras”. During the day they work on reaching, sitting criss-cross, side sitting, using a spoon/fork, speech/language, puzzles, sorting, and the list goes on and on.

Weekends: We are either in Gainesville, Sarasota, or traveling to another city for ABM therapy. In fact as I write this post, I am sitting in a hotel room in NYC at 8pm on a Thursday night with nothing but time on my hands since Mattie went to bed an hour ago. How times have changed! If you would have asked me a few years back if I would picture myself holed up in a room in NYC for the night, I would have laughed. I have an entire beautiful city right outside my door and here I am, drinking a glass a wine and writing (along with playing candy crush… my new favorite addiction). We are here again in Manhattan for 7 sessions of ABM with Marcy. This trip was made possible by the Ortiz and Gronkowski Jersey fundraisers and the “Masters for Mattie” fundraiser earlier this year ((Thank you!!))

HI NYC! Dinner Central Park NYC Marcy

As most of you guys know, Mattie started to Army crawl after our trip to California to the main ABM Center. We just completed 13 sessons of ABM in the past 3 weeks (between Gainesville and NYC). Mattie is starting to use her knees and legs while crawling, it still isn’t a perfect crawl but progress is progress and I will take it!!

With so much time dedicated to Mattie, life is just going by in a blur these days. I feel like we never stop. We never do stop which is probably why I feel that way. As soon as we are back from an ABM trip, there is something else looming the following weekend. I just told my mom that I am booked until August. How ridiculous is that?!? I keep telling myself the progress Mattie is making is worth it all, but sometimes I feel like at what cost? Will Joba regret traveling around for Mattie, always on her schedule instead of having fun weekends? Will Jim be resentful because I only have so much of myself to give and sometimes there is nothing left for him? Will Mattie ever have a “normal” childhood that does not revolve around therapy appts and the next “best thing” to get her to move? How do we do it all and still enjoy it???

As the days and months pass, Mattie continues to show us what determination and persistence can achieve, and in that, I find my strength, hope, and resolve that it can all be done with mostly smiles on our faces.