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

Consumed

I used to tell myself that this will get easier. That our life won’t be all consumed with research, therapy, doctors appointments, travel, decisions, phone calls, fights with insurance companies (I could go on) … That was until this past weekend. I decided, officially, that no, this will not get easier. I feel better now that I have no expectations. Come on life, hit me with your best shot!

Two days later it did. Life gave us a great big smack upside the head. Apparently Mattie’s right ear did not heal after surgery. Her ear clogged with dried blood and after 10 days of using drops to get the blood to loosen, we were told that the surgery would have to be done again! Are you kidding?! I asked the doctor if this was common and of course, it is not and this never happens. I asked the doctor what are the chances it will happen again to her ear and he said, it won’t because it does not ever happen. Ummmm yea, we just proved that wrong! Seriously, What are the chances!? Our nurse said to go play the lotto. I rolled my eyes in return (later that day I bought a $1 ticket and of course lost). So that leaves us with having to put Mattie under again. Surgery is set for December 6th.

It took a few days to recover from that smack so as I am moving through our everyday life of research, therapy, doctors appointments, travel, decisions, phone calls, fights with insurance companies PLUS working full time and being a mom, when life laughs at us again and says, “I got another one up my sleeve”.

I know I have mentioned that we have seen 3 doctors to get 3 opinions on Mattie’s eyes. Well, we ended up seeing a 4th eye doctor based on eye doctor #1 recommending us to get another opinion from another eye doctor in her practice. So, I said why the heck not? Let’s hire every eye doctor in Tampa to give an opinion and then put them all in a hat and pull a winner (I thought it sounded like a good idea, she did not).  I booked the appt anyway and guess what… OPINION #4 – LETS DO NOTHING! I seriously almost laughed in this doctor’s face. How can we not do anything when there is OBVIOUSLY a problem? So completely frustrating! We had an appointment 4 days later with eye doctor #3, and at this point we decided that we would pick him and ditch everyone else’s opinion. Eye Doctor #3 decided that yes there is a problem, that eye doctor #1 and #4 are incompetent, and he wrote a prescription for Mattie to get glasses. He really wanted us to give it a good try. He is worried that if Mattie’s eye continues to turn in, her brain will decide that since the turned in eye is not being used, the brain will just “shut it off” completely. Well, that is not good! Mattie needs all her parts that are working to continue to work. So we proceed to go out and buy a $300 pair of glasses that, of course, Mattie refuses to wear. She cries, yanks, cries some more, until I cant stand it anymore and rip them off her face for her. At least I can say we tried. We went back to see Eye Doctor #3 this past Monday. The big news of the week… Mattie is going in for eye surgery. 2 more surgeries in the next 33 days. Poor girl 😦 Hopefully the eye surgery will fix the crossing and we won’t have to worry about glasses for a long time.

Let’s move on to some more positive things that are going for Mattie! Mattie has really developed cognitively the past few months. Since the tubes were put in her ears, Mattie has started to say a few words. It is remarkable in itself since only one ear is hearing right now. Mattie can now officially say Joba, Cracker, Kitty, Mama, Dada, and No. It really is so amazing to hear her say words after not hearing any words for so long! Most of the time Mattie repeats the words or just blurts them out rather then using them with meaning, unless she is saying Joba – her favorite person.

Mattie is also signing a lot more as well. I last wrote that she started to sign the word more. Now she has added to that by signing milk, eat, and please! The other day I was sitting at the table with her giving her a snack and I turned my back to her to look at something else. She proceeded to calmly tap my back and when I turned toward her, she signed more! I was so excited to see this! The thought process that it took for her to get my attention and get a snack just shows that she is starting to cognitively develop. Yea!!!!! Check out this video of Mattie signing by clicking HERE

She can put her 2 pointer fingers together to make a star when we are singing twinkle twinkle little star. She started to grab her toes again (we started back up doing cranial sacral massages and I think it really helps her to separate her upper and lower body). The best and most wonderful skill she has recently acquired is dancing! Currently her favorite song is Gangnam Style. She really likes hip hop / dance music 😉 – Click HERE to see a short video of Mattie dancing.

Mattie had mastered being able to blow kisses and has now mastered an actual kiss, with lips puckered and full sounds. It melts my heart when she gives me a kiss without asking.

Hope for Mattie Holiday Fundraiser

Yesterday we kicked off our Hope for Mattie Holiday Fundraiser!
In the spirit of the upcoming season, we have created the first ever Hope for Mattie Holiday Ornament. We are starting with a goal of 100 ornaments! All proceeds raised from the sale of the Hope Ornament go directly to pay for Mattie’s ABM therapy.
We also have a new Tote Bag and Keychain available to show your love and support in style 😉 Check out our new page by clicking HERE
Everyday holds the possibility of a miracle!
Thank you!!