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 😉

Am I a special needs mom? I am a special needs mom.

Back when Mattie was 4 months old, I overheard Jim calling Mattie “my special needs daughter”. WHAT?????? I was shocked, then sad, then in denial in all of 1 minute. That was the first time that anyone has said that aloud, let alone her father. My thought process went a little like this: Is that what people think? I don’t think that. I WONT say that! Am I the delusional one? Mattie is fine. She is not a “special needs” child.

At that point we were still not sure how Mattie’s PVL would affect her. It seems as the months passed and she was failing milestone after milestone, the “special needs” tag kept popping up. I eventually learned to say those words and accept it. I am not sure when that exact moment of acceptance occurred. I think it was always there. I was just not ready to admit it. I was still holding on to hope that everything was going to be ok.

We knew from the moment my water broke that Mattie’s life may not be easy. I had many days to think about it as I lied in my hospital bed. There were many long days and nights to think and pray and wonder and hope and accept. I am often asked how I can move forward after finding out my daughter had brain damage. The answer is not a simple one, as I have so many emotions, but I do know that I accepted the possibility of something going wrong long before Mattie was even born. Does that make it easier? Maybe in some ways it does. Some moms go through pregnancy with no complications only to find out after their baby is born that something is wrong, no warning given, not even a thought of something bad happening. These moms are not given a choice. We had a choice and we had time to accept our choice, no matter the outcome. I have no regrets; Mattie’s smile makes it all worth it, but will she? My biggest fear is that one day she regrets our decision. It is tough to even say that out loud and when I do it brings tears to my eyes. But I don’t want her to ever feel like she would rather not have lived then to be …disabled. So how do I teach her that???

A fellow SNM posted a blog just yesterday called “Mommy, will I walk when I am older?” OMG! I was crying reading this. This could be Mattie one day. What would we even say to her? How would we choose the right words to make sure she accepts herself for who she is and not become saddened by her limitations? I have a hard enough time coming up with a response when Joba tells me that one of the kids in his class does not want to be his friend… this is… just… mind boggling! I truly appreciate what this mom has to say about it. As I share and learn from other SNM, I continue to grow as a mom and I continue to gain the confidence I need to know how to handle moments like these.

This short essay goes around the special needs community quite often.

Welcome to Holland by Emily Perl Kingsley

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!” “Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Of course I went through periods of anger, sadness, pity, mourning for what could have been. I still have those emotions. I am not sure they will ever fully go away, but I also have periods of joy, happiness, and amazement. Raising a special needs child has changed my life. There is no more ”should be” in my life (she should be walking, she should be sitting). The “should be” has been replaced with patience, understanding, love, and compassion at the samllest things. Every little or big milestone Mattie accomplishes makes my heart burst with love and joy. Mattie is teaching me to slow down and take it one day at a time.

As all moms do, whether you are a “special needs mom” or a “normal mom” we still want to see our children grow up happy, healthy, self-reliant, and confident in themselves and their abilities and succeed in life. We want our children to feel loved and show love because in the end “all you need is love”.

I can only hope this for my beautiful daughter, Mattingly Hope.

In a text from Sarah last week, “rockin the 4 point”. This made my day! Thank you 🙂

Steady Progress

Mattie’s one year well visit was this week. Mattie is now 17 pounds 13 ounces! She is in the 75% percentile for height and 5% for weight. She is really tall but not very big. We went through her history since our last pedi appt and then through her development. Dr. B places her around 6 months old and around 4-5 months gross motor. We are going to go back in 6 weeks for a developmental and weight check up and a shot (we are on an alternative vaccine schedule).  I was not happy with her weight gain, but Dr. B thinks she is still making steady progress. He wants to see her in the 25% range by her 2nd birthday.

We go to Gainesville once a month for an alternative physical therapy called Anat Baniel Method or ABM. It is based on neuroplasticity, the brain’s ability to reorganize itself and gain new skills by forming new neural connections. With help, the brain can, and does, rewire itself.

It is hard in my own words to explain ABM so here’s an excerpt out of Anat’s book “Kids Beyond Limits,” you can download a free sample of her book here.

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Almost One!

Only 2 more days till Mattie turns one!! It seems like this year has been the longest year of my life but then at the same time Mattie is still so little that she cant be turning one already! To celebrate her birthday on Tuesday, we have a day of boot camp plus an hour of physical therapy followed by my attempt to make it seem like she is a normal one year old by getting a birthday cake and letting her smash it all up. It should be interesting since she does not eat table food, never really smashed food, and probably has no idea what it is all for. Her big 1st birthday bash is next Saturday. We are having a pool party! Yes, there will be a million people here since I don’t know how to do anything small! I originally was not sure what to do for her 1st birthday. I thought about just doing something low key with just family, but again I want to do everything as I did Joba and we had 50+ people at his 1st birthday. I am going to make a “Look how far I’ve come table” with a preemie diaper, a collage of pictures from her first year and some of her tiny clothes. It should be cute.

For her birthday we were going to take her to her first Yankee game this Friday afternoon vs the Rays, but Jim talked me out of that with the “all that money plus we would only get to be there for a few innings” so I am taking a half day and we are going to watch it from home instead. I then realize what day Friday is. It is Good Friday. Exactly one Good Friday ago is when we got the news that Mattie had brain damage. She was 19 days old.

This is what I wrote last year:

We have just been lead into the neonatologist’s office. It felt like high school when I was on the way to the principal’s office. There was trouble in our future. I told myself whatever was said, I would not cry. I would be brave and strong for Mattie and Jim. As Dr. W is talking to us, I glance over at Jim. He is looking straight at the doctor. I wanted to reach out and hold his hand but he was sitting too far away. I remember looking out the window and thinking to myself, this is not happening and then saying to myself, there is nothing good about this Good Friday. I force myself to refocus.

We have debated on what to tell people. Do we use the words I can’t seem say out loud? Do we sugar coat this? You have followed us for the last 3 months, prayed with us, supported us, it is only right to tell you what we know…

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Welcome

Having a child with PVL is a waiting game we were told. No one knows the effect the cysts in her brain will have on her development, motor skills or cognitive skills. I remember in the beginning charting milestones… or should I say not charting milestones. Milestones were so important to me. I would spend time every week going over what she was doing and what she was not doing, I was driving my self crazy and it really was not helping. Now, a year later, I pretty much stopped charting since there was really not much to mark down. “Pretty much” meaning that I look at it every 3 months 😉 Mattie is at a 6 month old level in most skills except gross motor where she is more like a 4 month old. Since Mattie was born 9 weeks premature, she is still very small for her age. Mattie weighs 16 pounds and just recently made it on the growth chart for weight (7% Woohoo). Even though Mattie was diagnosed with cerebral palsy in December, we are still playing the waiting game. We are not really sure what Mattie’s full potential will be.

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