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.

Moving Forward – Our Cross Country Trip

Jim, Mattie, and I recently got back from our 9 day trip to California. This trip has been in the making for the past year. The main ABM Center is in San Rafael, just north of San Francisco. Since starting ABM 15 months ago, I knew that we just had to go out there to meet Anat, the founder of ABM, and her top practitioners. This trip was made possible by all of YOU! All 10 ABM sessions and lodging were paid for with donations made to Mattie in the past 6 months. This trip happened because of the amazing outpouring of love and support that had been shown towards Mattie.

Here is a recap of our amazing trip:

Saturday and Sunday

I am catching up on emails as I wait for Mattie to wake up from her nap. We have been in CA less than 48 hours. Last night Jim was in the tub with Mattie giving her a bath. Since we could not bring our special bath tub across the country, one of us has to get in the tub with her to hold her up. This is always uncomfortable and scary for her since it is awkward positioning and she has to rely on us to make sure she is supported. As I am washing and Jim is holding, I glance up at Jim. He had been looking at me. He says “how did we get here?” I give him a half smile and don’t respond. There was nothing to say. The answer is in our eyes, in our heart, and soul and only we can see it. Traveling around the country to get the help Mattie needs has been a constant normal for us. Every penny we save goes to fund these trips. They are not trips meant for fun but the sole purpose of these trips is to give Mattie the ability to move, walk, sit, stand, and run. Something I used to take for granted. We have a mission. We will do everything in our power to help her become the best she can be, no matter the sacrifice. I have come to understand that is the true meaning of selfless love.

We had an opportunity to walk the streets of San Francesco yesterday. Both of us saying how much fun it would be if we came back, just the two of us. I tell Jim that I could never come back without Mattie knowing the ABM center is just 30 minutes away. Then Jim says he believes that one day when we retire, we will be back and Mattie will be independent and we can go on real vacations not therapy trips. Then he asks if I feel the same way and I tell him “I never thought about it”. I tried, at that moment, to imagine it. A time with no kids, no therapy, being carefree and… I couldn’t picture it. Then I realize that I have become so consumed with helping Mattie, that I forget what life would be like if it were… ok I am not going to go there since that is not reality, so I made a mental note to add San Francisco back to the bucket list and another note to go on a much needed adult get away very soon!

Daddy and M

Mommy and M

We headed down to San Jose later that afternoon. This would be our 2nd city on our ABM trip. Mattie’s first 2 sessions would be with Andrea Bowers. I was very excited to finally meet Andrea. She often posts great articles and awesome advice on the ABM FB group and her site. She had a son with CP who is in his 20’s so she always has great insight about being a special needs mom in conjunction with doing ABM. The 2 sessions went great. Mattie seemed to really like Andrea and we saw some great movement come out of these 2 sessions.

After the sessions were over we hopped in the car and headed to our final city, San Rafael. We were able to get a great deal on a rental house, thanks to the owner being very kind and generous. The house was going to be the perfect place to spend the rest of the week. Mattie would have her own room, be able to roll around and get lots of floor time. Jim and I would be able to cook dinner every night (a BIG money saver) and just hang out and catch up on life, since Mattie’s bed time is 7pm.

Monday

The next morning we headed to the ABM Center. I was not sure what to expect, but I knew I was really looking forward to meeting everyone!! As we waited in the lobby for our first sessions, Anat Baniel came out of a room and introduced herself to Mattie. I was very excited to finally be able to meet the woman behind the AB in ABM and who we have entrusted with helping Mattie learn to move. We would have 2 sessions with Anat later this week!

Sylva and Neil were our practitioners for our first day at the Center. They were both fantastic and Mattie seemed to really like them. By the time the 2nd session was done, Mattie was toast. She went to bed at 6:30pm she was so tired from all the learning. So far 4 sessions out of 10 were completed and we both were very happy with the progress and changes we were seeing in Mattie. Yea!!!! Now what were Jim and I going to do for the rest of the night… Netflix and a bottle of wine seemed fitting 😉

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Tuesday

Today is the day we get to have an hour of one-on-one with Anat. I am so excited to see how Mattie responds to her!! I have heard stories from other moms about Anat but I was in no way prepared for what was to come. Jim and I left there feeling like our minds were blown. Anat had a ton of great insight on me and Mattie in just the first few minutes of meeting us. She thinks I help Mattie too much and talk for her (which I do) but to have someone who does not know me point it out made it clearer in my mind just how much I assumed I knew what Mattie wanted. At first when a yes/no question was posed to Mattie she would look at me to make a decision for her. When I would not do it, she seemed confused as though she had no idea how to respond since we never ask her what she wants. It was really eye opening. The first part of the hour was spent with Anat working on Mattie and the last 20 minutes was more for Jim and I. By the end of the hour Mattie was answering yes or no to everything. It was pretty incredible. I did feel like it was more of a psychological session with Jim and I more than a movement lesson with Mattie. It is going to take some time to wrap my mind around what was said. I hope that the Thursday session with Anat is more focused on Mattie’s movement.

Wednesday

Our only day off! We decided to head to the golden gate bridge and walk across it. It was raining so the pics we took were not great but it was pretty cool. Later that afternoon we headed to a winery near Napa. Jim and I both love wine so we were excited to visit a real winery. It was still raining so we were a little bummed about that but we all had fun. Even Mattie!

Bridge

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Thursday

Today’s session with Anat was amazing! It might have been the best ABM session Mattie ever had. Anat made it a point to really push Mattie to show just how capable she is. She had Mattie doing all sorts of new things, from pulling to stand, to twisting her body by using her lower back. It was great to see Mattie responding so well and it was obvious she liked showing off her new abilities. Anat thinks Mattie has immense potential (there’s that word again!) and it was very encouraging to hear that we are on the right path.

Nice Back

Friday:

Mattie is burned out. We knew that 10 sessions would be pushing her but we thought with a day off in between that she might have been able to handle it. Ummm not so much. Take a look at those eyes.

Tired

She is fried!!! Today’s sessions were not fantastic but Mattie was still a trooper! Overall I am very happy with small changes we are seeing in Mattie. She is holding her back up straighter and talking a ton more. She has learned to answer yes and no for what she wants. She has been great this entire trip. I could not be more proud of her.

Saturday

We leave to go back home today. I think we are all ready to get back. I have missed Joba more than words can even describe. Joba stayed with my sister for a week and then with his grandma’s the rest of the time. He did really well while we were gone. I do know that I can never leave him for that long again. Every time I talk to him or Skype him, my heart hurts knowing how far away we are from each other.

Anat and the practitioners at the ABM Center believe Mattie is on the verge of a break through and want to see Mattie back in California every 3 weeks for the next 3 months. As much as I wish it was possible, we just can’t afford to come back that soon or even in the next 3 months. I really feel like this trip was a success but at the same time I am left feeling anxious and guilty that we can’t follow the plan they want for Mattie. It really is an unrealistic plan but I am still racking my brain on how we could get back sooner rather than later. We have come up with the best alternative plan that is doable for now. We have decided to go to Gainesville every 3 weeks for 6 sessions of ABM and continue to see our Sarasota ABM practitioner in between.

Today
We have been back for a little over 2 weeks now and until yesterday I had no real progress to report on Mattie. I know that Mattie needed time to process everything she learned in Cali. So the past few weeks have been relaxed for her with no travel and lots of playing on the floor time. Then (drum roll please) Sarah, Mattie’s super fantastic nanny, says that Mattie used her ARMS to move FORWARD all by herself. So, you may not think this is a big deal, but it REALLY is a HUGE DEAL. Mattie, for the first time ever, moved FORWARD. I am just amazed. I saw it with my own eyes today. I have been crying on and off all day every time I watch the video.

Please click HERE to see this amazing achievement

This, my friends, is what I call success. This is why we believe in ABM. This is because of you. Thank you from the bottom of my heart.

Run for Mattie

The Run for Mattie Team just completed the Gasparilla ½ Marathon on February 24th. Our Fund-Racing team for this race consisted of 7 members who all worked hard to “Run for Mattie”. As a team we raised over $2,500 for this race. We were just amazed at the generous donations that kept pouring in and actually continue to come in. Again, I am left with no words to express just how grateful we are to have such amazing friends.

Running 13 miles for Mattie is an experience I will never forget. In just 3 hours, I went through such crazy emotions. I have been asked how the race went and all I can say was it was good and bad and emotional. I will not lie; I have never run 13 miles before. The best I could do to train for this was 4 ½ miles, so going into Sunday morning I was really nervous but excited at the same time. Jim promised he would run with me. I know that was hard for him as he has run ½ marathons before and can run them in less than 2 hours. My goal was under 3 hours. The beginning went really well, probably too well. Between mile 4 and 5 we started taking walking breaks but we were running more than walking. Around mile 7 I told Jim “I can do this”. At mile 10, Jim gave a pep talk and I was motivated to finish it out. We were on track for 2 hours 40 minutes… then my body took over and gave me the middle finger. I was done. I was cramping, I had the chills, I was hungry, and I started crying. I was a done deal. Mile 10 took us 22 minutes to complete. Then Mindy texted me that she saw a sign that read “Kids with cerebral palsy think running is a gift”. The tears came again and we pushed on. When Tasha handed over our Run for Mattie banner as we were about to cross the finish line, tears came poring out. So, it was not pretty, almost pathetic really, but who cares. I did it. I did it for my beautiful daughter, Mattie, in hopes that she will one day realize that I would do anything for her.
Here is what a few of the Run for Mattie Team said about the day:
“I was so honored to be able to help you guys in any way that I can. It definitely was an emotional experience due to the fact that I almost cried in mile 1.”
“It was truly the most meaningful and emotional race I have ever run. I am so glad I was able to run it with everyone. It really touched my heart to have Mattie as my motivation throughout training and during the race. I was so blown away by the generosity of my friends and family too. I have always known I have been blessed with such great people in my life, but to see them all answer the call, when I asked them to, still had me in awe. I am so grateful to have been able to help Mattie and as with all things in my life, I wouldn’t have been able to do it without the support and love of my generous family and friends.”
“Running this race for Mattie was an amazing experience. Running is an ability so many people take for granted and my hope is that one day my sweet niece will be running along side of me. It was such an honor to be part of Team Mattie!!”

Here are a few pics from the race.

Run for Mattie

Run for Mattie 2

Team Mattie

Team Mattie

The View on the Run

Our Bling!

A very amazing friend put together a Raffle for Mattie recently. We were raffling off a personalized signed game day jersey from Rob Gronkowski, the New England Patriots tight end. With 115 entries into the raffle, the winner was Ian Baxter, who by the way, is a huge Patriots fan. Ian had the shirt personalized with his kids names 🙂 Too Cute! Click this link to see Mattie pull the winner:
http://youtu.be/F9Qm87yGCUI

Signed Jersey

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The past few ABM sessions have gone exceptionally well! We could not be doing as many sessions if it were not for all of you. Mattie has a big 5k race coming up, Run for Hope. Have you checked it out? All of the proceeds from the race will continue to fund Mattie’s ABM sessions. If you can’t be there April 27th, please consider donating or becoming a sponsor, we still have a few sponsorship spots available.

Run For Hope

I know I have said this a hundred times… but… we appreciate the generosity shown to our family. You guys rock and with your support, Mattie is going to go far!

Signed Jersey Raffle

Only 3 days left to enter for your chance to win a Rob Gronkowski Signed Jersey! The jersey will be inscribed personally for the winner and signed. For every $10 donated, you will be entered into the drawing (example: $10 donation = 1 chance to win; $50 donation = 5 chances to win).

The winner will be announced on March 2nd.

Every dollar you donate goes directly to fund Mattie’s ABM therapies!

Click the Link Below to Enter the Raffle!

Donate

Help spread the word and pass this link along to your friends and family:
https://hopeformattie.com/raffle/

Gronk
Rob Gronkowski – Tight End for the New England Patriots

A huge THANK YOU is in order for our friends that made this raffle possible!

Thank You!

Big Decisions

With all this cognitive development going on, Mattie had not really been “working” on her gross motor skills. Since our last post we have had quite a few ABM sessions in Gainesville and in NYC. We also started back doing cranial sacral massages. The NYC trip went very well. By the last session, Mattie was able to sit up nice and tall, hips were loose, and legs were relaxed. Since we have been back from NYC, Mattie has started to get on all fours in a crawling position all by her self. She is starting to twist her back as she roll which is the starting point to her coming into a sit and she is using her elbows for support when she props herself up. All of these new and exciting movements!! Woohoo! We are constantly trying to make her aware of her body. I am always pointing out her body parts and having her touch her knees and toes 🙂

Sarah, Mattie’s Nanny, sent this video to me the other day. This video shows Mattie cleaning up (takes after her momma). I know I don’t post a lot of videos of Mattie, but this one shows her in her “true form”, on the floor with restrictive movements. CLICK HERE FOR THE VIDEO!

Jim and I ended up making one of the biggest decisions to date as far as Mattie’s therapy is concerned. As of November, we stopped doing all traditional physical therapy. This was not an easy decision. I have been back and forth a million times this past year on what we should do, ABM + PT, only PT, only ABM. It was an internal battle that I fought everyday. How do you take away the one therapy that the medical community “says” works? It was like we are giving them the middle finger and saying “who cares about all your research and studies, we are doing it our way”. That is scary! Once we made the decision, I felt instant relief. A weight was lifted off my shoulders and I knew in my heart and mind that we were making the right choice… for now 🙂

When we started ABM, Jim was skeptical and I was hopeful. When I read that they want you to stop traditional OT and PT, I thought it was crazy. Over time I have really come around to the benefits of ABM and I would be willing to say that a large portion of the progress Mattie has made so far has been a result of our ABM efforts. Is this the fix all, the one therapy that will instantly make Mattie sit up and walk? The answer is no (I am not delusional), but ABM helps Mattie become aware of her own body in her own way. She is never forced to do anything. By her lying down on the ground, she is learning how to move herself like most infants do. The natural progression with babies is to roll, sit up, crawl, cruise, and then eventually walk. Babies have to learn each of these processes and build on them in order to move on to more complicated movements. One of the teachings of ABM is to not do things with a child that they aren’t ready for. The idea is to work incrementally, at the pace of the individual child. This means no walking or standing. We had come to a point in PT that walking was the main goal. Yes, Mattie can be placed in a walker and with assistance she can take steps, almost across a room but… she does not like it and most of the time will cry. When this happens I know that there is no learning going on, her brain is shut off. Can you imagine if you had no balance and were forced to try and walk? Yikes!

As much as I believe in ABM and know that it is helping, I know I need to keep an open mind as far as her progress or even her non-progress. The last thing I want to do is take something away that could be helping Mattie. My hope is that one day we can find a mesh between these two therapies to create the ideal learning environment for her. Until then, we have committed ourselves to 8-10 ABM sessions a month with an upcoming trip to Cali to the main ABM center in March.

Right around the time that we made this decision, a father of a young boy with CP posted this,

“Special needs parents have a tough job. We have to decide what is best for our kids. We have to gamble the most valuable thing in our lives; their future. There is no way to know if your decision was the right one. We will always be afraid we chose wrong. And that’s a good thing. That fear will make us think deeply about every choice we make. But the other side of that coin is that we have to be able to forgive ourselves for the mistakes we make. We can’t let guilt and regret make us give up looking or afraid to try something new. Make the best decision you can then forgive yourself if you were wrong. As long as you do the first part, somehow you will be able to do the second part”.

No truer words!

Mattie Christmas 2012

The Price of Success

In a recent post we discussed the differences in traditional therapy (OT/PT) and ABM and the resulting clash of theories. The simplest way I can describe the difference is that the traditional theory wants a special needs child to mimic the development of a healthy child in milestones and timelines, while ABM focuses on the child’s current capabilities regardless of what they “should” be doing. This means that while OT and PT want us to put Mattie in the standing position on a regular basis, using her walker to practice walking, ABM doesn’t want us putting her into any position she can’t get into by herself, including standing. This dichotomy often puts us in a position of having to decide between the two theories and the multitude of therapists helping Mattie. This is not the only source of doubt and second guessing for Jess and I.

Like everyone, we have a finite amount of resources. While traditional therapies are covered by insurance, alternative therapies like ABM are not. There are other alternative therapies that we would like to try as well, cranial sacral massage (we did this for a while, stopped, now we are thinking of starting again) and hyperbaric oxygen therapy (HBOT) are two which we have discussed. In addition, there are some different types of surgeries and treatments which have been shown to help children with high tone/CP, as well as different orthotics-specifically a doctor on Long Island who makes customized AFO’s which some other parents we know rave about. This leads us to the question “is this the best use of our money?”

So far we have devoted most (if not all) of our money to ABM. We’ve done this because we believe in its benefits and we believe it has helped Mattie a great deal. This doesn’t mean that something else won’t help her, which is where the difficulty lies. As the money spent on ABM adds up and zero’s are added to the total amount we have spent, it is difficult not to second guess yourself. Would that money be better spent on HBOT? Is it worth the money to fly up to Long Island and get Mattie fitted for special AFO’s? Answering these questions becomes difficult when you realize that our resources are a zero sum game; spending money on a particular surgery is going to mean that we don’t have enough to go to the ABM center in California for therapy. More of one equals less of another.

For me, the questions and doubts can add up and sometimes result in feelings of guilt and inadequacy. As a father, I feel responsible for providing for the needs of my family. What kind of father am I if I can’t give my daughter everything she needs to have the most normal life possible (whatever that is)? What kind of man am I when I have to ask people-family, friends, even strangers-for money to help me take care of my daughter? This whole experience is incredibly humbling.

Jess and I are extremely lucky to have such a generous group of family and friends. We realize there are families out there with children that have more difficulties than Mattie and fewer resources to turn to for help. And so, at the end of the day we go to bed feeling fortunate. Fortunate to have such a large group of doctors, therapists, practitioners, family and friends to turn to for help. And ultimately, fortunate to have Mattie, secure in the knowledge that we have done everything we can to help our daughter, and will continue to do so.

Good morning Momma!

I am learning to get my legs underneath me…

and to lift myself up…

and to almost sit up, all by myself!!

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.

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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.

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Noses and Glasses

We have had a busy June and July. August is looking pretty full as well. Traveling for ABM is really taking a chunk of our free time. Since the last update in June (First Steps), we have done 10 ABM sessions with another 5 more on the schedule for July!

Mattie is starting to have better balance, she is using her hands to balance herself, she has added Na-Na-Na to her vocabulary, she is eating table food (yea no more pureed-pain-in-the-ass-food), she can grab food and feed herself (although she misses ½ the time), she officially knows where her nose and belly are and best of all, she is reaching up to be held (heart melting) and gives us “noses” (eskimo kisses). Although she still can’t sit on her own, I was able to take her grocery shopping for the first time this week using an actual shopping cart!! This should not be a big deal for most people, but it was to me. A few SNM suggested that I use sugar bags or water to keep her from falling over, but I decided to wing it and just have her hold on (for dear life) and for the most part she did really well  (she only fell over twice!!).

As we continue with ABM, PT, and OT, we are finding that even though she is behind, she is making slow and steady progress. All of our time and effort is really paying off and that is what gives me motivation to continue this crazy hectic schedule.

We were officially released from Mattie’s GI doctor. Yea!!!! Another ‘ologist crossed off our list! Mattie is back on the growth charts and at her 15 month checkup last week she weighs a whopping 19 pounds 14 ounces! She is in the 40% for height and 25% for weight. We are back to every 3 months with her pedi!

We saw Mattie’s neurologist this month. He thinks she is making progress and has pushed our appts to every 6 months rather than every 3 months. He had nothing new to tell us and we had nothing new for him. He is old school and some of the alternative therapies we are doing with Mattie he has never heard of. I have been thinking about switching neurologists, but he is one of the best in our area. I am not sure that a new doctor would really shed any light on Mattie and her PVL since all kids are different, so that is why we have not made the switch or even gotten a 2nd opinion.

One area that I have gotten 3 options on is her eyes and vision. We saw Mattie’s eye doctor this month and let’s just say that we are no longer just “waiting”. As you know her eyes will occasionally turn in. This does not happen all the time and most people may not even notice, which is why we have been holding off on surgery. We started patching again. This time it is her left eye. Dr. W thinks that her right eye is now the weaker eye (we were patching her right to fix her left) and Dr. W wants Mattie in GLASSES!!! I knew this was coming. We went home and took out the lenses of her sunglasses to see how she would do with wearing glasses since we were advised that if she would not leave them on then we should wait on the glasses. She immediately takes them off. I can’t even get a picture of her wearing them! So… I just bought an eye glass strap in hopes that she cant rip them off. I am waiting for that to come in the mail before we give up on this eye-dea 😉

First Steps

Since going to Gainesville a few weekends ago, Mattie has been making steady progress. She rolls everywhere these days and still is trying to sit up the hard way! She is much more relaxed and has been better playing with her cognitive toys. I have been trying to teach her what a nose is. I will point to my nose, her nose, & pooh’s nose, repeating the word nose. Occasionally she will reach out and grab my nose when I ask her but most of the time she brings her hands to her mouth and starts to make a noise and moves her hand back and forth. It is sooo funny. As I am talking to Sarah about this, Sarah mentions that when she signs “eat” to Mattie, she does the same thing! And apparently while she is lying in bed trying to nap!! Oh well, one day she will realize that she has a nose and will be able to sign “eat”, but until then we will keep ourselves amused with her playful antics. 🙂

So last week I could not make it to her OT appointment. Jim calls me and wants to know if I got his text of Mattie walking. I am in shock. WHAT?!?!?! So I watch the video and I am in tears. First of all, we don’t normally “walk” Mattie. The few times our PT tried, Mattie would scream and cry. She does not know to move her feet forward or to bend her knees. In order for her to “walk” we would have to pick up her legs, which are stiff as a board, and move them forward. It has been a long time since we “walked” her. During this OT session, Mattie started to bend her knees and pick up her foot and place it down again. So they decided to try and see what she would do. While holding under her arms, she bends her knees, picks up her foot and actually moves forwards. She is walking!! It was really incredible to see. I have never given up hope that she would walk one day, and this just proves to me that she will be able to do it!! Check it out yourself: Video of Mattie Walking

Some other updates 🙂

We had a pedi appt last Thursday and Mattie gained 15 ounces in 6 weeks. We both thought that was pretty good!! This puts her in the 5%. She is back on the charts!

Mattie has been doing better with eating food. Last month we had her speech therapist come out to the house and give us some pointers. I thought Mattie chokes on table food, but I was corrected in that she gags. Either way, it makes me panic! If we can place the food on the side of her mouth and not straight in, she does better. We have found out that she loves chicken. Like addicted to it!! 99% of her food is now homemade. It is such a pain, but hopefully our efforts are paying off with some weight gain.

We were able to get in 10 total ABM sessions last month and another 8 are on the books for June. I think Jim really started to believe in this therapy after seeing the progress she has made the past few weeks. He even questioned whether we should move to California for a few years, where the main ABM center is. Now that put me in a panic. I think we are doing well with the system we have in place. We are getting in what I believe to be the recommend sessions every month. As long as we keep our commitment to taking her the 8-10 times a month, there is no reason to move. Plus, if I was to ever leave my family it would be to move to NYC not Cali 😉

So… speaking of NYC…

Jim and I decided to take Mattie to see Marcy, a top ABM trainer and practitioner, in NYC this summer. She comes highly recommended from other moms and from our Gainesville practitioner, Josie. We talked to Josie about it and Jim’s main question to her was, what is the difference between spending all of this money to see her rather then just coming to you? I loved Josie’s response. Sometimes having another ABM practitioner work with Mattie could give alternative insights to some of the issues Mattie is having and how to resolve them. Since we can’t afford a trip to CA for the main ABM center right now, this is the next best thing. We already planned a trip to upstate NY this summer to see Jim’s family. So this seemed like the perfect opportunity to go into the city to see Marcy. We are going to be able to do 5 sessions thanks to all the donations we have received so far!! I am really excited about this trip!