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.

Mattie

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.

Us

6 thoughts on “Ultimate Goal

  1. the sight of mattie standing up and down brought tears to my eyes……jim’s voice is so soothing and I could tell he was trying to contain his excitement so mattie would continue to STAND up and down and then say again………….your little girl is such a joy and I follow her progress on here and from joanne on a daily basis…..the two of you are wonderful parents and I don’t know who is the lucky one, you two or mattie…….fondly joyce

  2. WOOOOOHOOOOOO!! Sending strength, energy and major good vibes your way for this next month!! You guys have to close your eyes, push thru and just think- in 30 days- you’ll be fine and settled:) I really wish I could be there to help in some way- if I had any vacation time- I’d be down there to help in an instant!

  3. We want to wish you the best of luck with everything.. I enjoy following Mattie’s progress. She is a very remarkable young lady and she couldn’t have asked for more loving parents, lets not forget Joba. What a great brother.. We are praying that all works out..even the house deal.. Good luck

  4. It is great to see Mattie progressing so well. I have a grandson who is 13 months and has been diagnosed with PVL. We just started with ABM last month and already I think we see results as far as awareness and calmness. Who do you use for Mattie’s ABM?
    Good Luck on your continuous journey

    L. Stumper

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