The Hope for Mattie Charity Golf Tournament was an amazing success! We raised over $6,500 for Mattie. Every penny raised will go to fund her therapies. We owe a HUGE thank you to all those that participated, volunteered sponsored and donated. We are forever grateful for your generosity. Mattie’s success is a direct reflection of your support. Thanks for being on her team!
The pics from the event are posted here: https://hopeformattie.shutterfly.com/
We hope to see everyone back next year!
Now for an update 🙂
I asked Jim how he was holding up last night and he just looked at me and grunted, which was probably the most appropriate response if someone asked me the same thing. It has been a crazy few weeks.
In 16 days we accomplished: running a 100 person golf tournament fundraiser for Mattie, a 3 day trip to Texas for surgery, a 4 day trip to NYC for therapy, followed by moving the day after we got home from NYC. It has been pretty stressful. We have managed not to kill each other…yet. We said goodbye to our old house with a late night jump in the pool. It brought back many great memories. I will miss that house but we must move on. So here is an update from the past few weeks.
Our whirlwind trip to Texas for Mattie’s surgery went well. The day before surgery we met the surgeon and discussed everything in detail. He wanted to release Mattie’s lower legs which had not been the plan. He thought her ankles were very tight. Mattie’s foot doctor in NY, just 5 weeks prior, said that Mattie had the most flexibility in her ankles he had ever seen in a kid with CP with no surgery. Surgery on her lower legs would mean Mattie in casts for 4 weeks! I was seriously not prepared for this and had to hold back tears toward the end of the appointment. As we walked out of his office, I had tears coming down. How can 2 doctor’s opinions be so different in just 5 weeks? Could Mattie’s ankles become that much tighter in that short of time? The surgeon had me feel her ankles and he was right, but Mattie’s tone/tightness can fluctuate sometimes… How will we handle Mattie in casts? How will Mattie do in casts? I am not good with sudden changes of plans, so I felt overwhelmed and confused. I called Jim from the car and he told me to call Dr. Jordan in NY. I didn’t want to bother the doctor and I knew his office was just about to close, but I called anyway. Dr. J spoke to me for almost an hour. His kind, slow demeanor really helped me to understand a little more about the surgery. He reassured me that Dr. Yngve was fantastic and that if Mattie had tone that day in her ankles she might not the next day and Dr. Y would see that and adjust accordingly. Dr. J also said that we could use Mattie’s AFO braces that he had made in August instead of casts. Also, Dr. Jordan was going to call Dr. Yngve as soon as I got off the phone to discuss Mattie. Yes!!! Man I love Dr. Jordan, he is truly amazing! I was feeling much better about this change in plan. That night I took my mom and Mattie to my favorite Texas steakhouse 🙂
The next morning we had to be at the hospital at 11am. Mattie went into surgery around 12:35. Surgery was to take around 1 – 1 ½ hours. At 1:37 Dr. Yngve came out to tell us that Mattie did really well and he was able to use her AFO’s instead of casts. Yea!!!!!! Now the wait to go back to see Mattie started. We could not go back to see her until she woke up. After an hour I was getting panicked. I had my mom go check in with the nurses and within 10 minutes I was finally able to go back and see her. She looked good. She had on huge knee immobilizers so I could not see where any of the incisions were. 20 minutes later we were upstairs in her room and discharge would be in an hour.
Once we got back to the hotel Mattie kept saying that she wanted to play on the floor. Talk about a quick recovery! The next day we flew home. Here is Mattie taking up the entire queen bed with those knee immobilizers!!
Mattie had 5 days home to recover from surgery before heading to NYC for 8 ABM sessions. I had 5 days to catch up on work and pack my house! Mattie is wearing her AFO’s 24 hours a day and using the knee immobilizers at night while she sleeps. We were concerned that Mattie had lost some of her abilities since surgery. She could not get into a W sit nor was she crawling, but she was able to long sit for the first time.
I was not too concerned as another mom I spoke with had the same things happen. I think Mattie had been using her tightness to move then suddenly she has all this flexibility and range. She was not sure how to move anymore. It was a little upsetting to see her get frustrated and just lay on the floor but I had faith that she would figure out new and better ways to move. This is why ABM sessions were important to have done right away. So off we go. This time it is my Mother-in-law (aka Grandma), Mattie, and I taking on NYC with 4 suitcases, 3 carry-ons, a cooler, car seat, and stroller. I am sure we were a sight to see! I wish I had a picture 🙂
UWS how I have missed you. (for you non-new Yorkers – UWS – Upper West Side). I fall in love with this area more and more. Day 1 we squeeze in 2 ABM sessions and dinner with my good friend from Long Island. We take Mattie with us. Mattie can’t sit in a restaurant high chair (not a high enough back) so we cart a portable high chair around everywhere we go. This time I leave it back because the other day after surgery Mattie was sitting up really good in a shopping cart, not even using the back, so I wanted to give the restaurant high chair a try. I put her in it and WOW! She can sit up with no issues. With her legs more relaxed, she can sit more on her butt. It was so fantastic to see!! Good bye carting around a portable high chair!!!
Day 2: ABM in the am and pm. Mattie is doing well but Marcy says her back is very tight. We take off her AFO braces during the sessions and Mattie is able to move a bit better. She is not used to wearing them so I feel like it really restricts her movements. Mattie is still having trouble with her right leg. It does not seem to be as loose as the left leg. After ABM, Mattie and I take a walk to Central Park and stop by the playground but it is swamped with kids… maybe tomorrow.
Day 3: Mattie is getting better movement and has been able to get into a side sit. Her back is releasing a little, and she is able to stand up a bit taller then she had been after surgery. After ABM Mattie and I take another walk up to Central Park, this time we take another route and go by the Museum of Natural History. Along the way I see a ton of people on benches eating…. Shake Shack. Hmmm what is this Shake Shack?? Why are like 20 different people eating it?? I must go check it out! We turn around and wait in a ridiculously long line, $10 later I am eating the best cheeseburger EVER (it has been a long time since fast food cheeseburgers) and Mattie and I are sharing some fries, on a park beach, in the middle of New York City…. Ahhh this is the life… granted it is only 3:30pm, and I am not sure why so many people are randomly eating Shake Shack at 3pm, but somehow it feels like the right thing to do 🙂
That night I take Mattie and Grandma to Rosa Mexicana. We go early as to not annoy everyone that we are bringing a 2 year old to a nice restaurant. Mattie does fabulously, as always, and I get my guac fix 🙂
Day 4: 2 more early ABM sessions before taking a cab to catch a 4pm flight home. Mattie did not nap between them so I was worried that the last session was going to be a waste. Mattie was super tired and almost burned out. This ended up being her best sessions so far! Mattie was able to get into a W sit! Marcy went over some stuff to work on at home and we said our goodbyes. Until next time UWS… See you when it gets warmer!
Overall the trip to NYC was exactly what Mattie needed. She is moving better since we have been back home. She feels better in my arms and her back is looser. She is W sitting again and is crawling army style. I think once she feels a bit more comfortable in the W sit we may see her frog-hop-crawl move again or even better, a real 4 legged crawl. She is able to long sit and side sit, which she has never done before. She is standing up really well compared to the first few days after surgery.
We go back to Gainesville for ABM sessions in a few weeks. This will give Mattie some time to integrate what she learned in NYC. Today at hippotherapy, Mattie sat up on her horse for the first time with a straight back. Check it out! Yes… I cried.
This surgery is going to open up a ton of new possibilities for Mattie. I can’t wait to see what the next few months bring. Thank you again for everyone who sent us good thoughts, prayers, and love. Everyday hold the possibility of a miracle!