Thursday, December 6, 2012

Theodore Mouse Goes to Sea, Hotwheels and Other Childhood Memories


When I was  a little girl my favorite book was Theodore Mouse Goes to Sea. I am not sure what happened to my copy of the book--either it was lost when my grandma's house burned down or I lost it somewhere along the way growing up. I have been looking for a copy for about 10 years, knowing that someday I wanted to be able to read it to my kids. I tried Amazon and eBay and never could get my hands on it. Today I went to a used bookstore that carries Melissa and Doug stuff because I was looking for gifts for Matthew for Christmas, and there it was.

There are a lot of things from when we were growing up that we always planned on sharing with him, hoping that he would love them as much as we do--The Muppets, books, Willy Wonka and the Chocolate Factory, Labyrinth, and, of course, all things Disney. And luckily for us, he is a big fan of all of them.

For Joe, one of the big things he wanted to share with Matthew was his love for Hotwheels and Matchbox cars. When we first started dating, many moons ago, one of the first stories he told me about his family was how his grandfather used to take him to a neighborhood shop in Brooklyn and buy him a new car every week or so. It meant so much to him, that he told the story at his grandfather's funeral last year and how he hoped to be able to do that with Matthew. A couple of months ago, my in-laws found all of those cars in their garage and Joe brought them home to Matthew, and they are being put to good use again. This kid is nuts about toy cars, I am wondering where we are going to store all the ones he will get in his Christmas haul.

I guess that expression, "Everything old is new again," is true.

What are some of the toys, books, movies, or experiences from your childhood that you are looking forward to sharing with your children?

Saturday, December 1, 2012

Matt Lights up Christmas!

Yesterday I got the idea to combine Matt's new obsession with all things Christmas with his Vision/Deaf & Hard of Hearing lesson by hooking up my iPod and the Christmas tree to the switch he uses to learn cause and effect. He had a great time and so did I :)

The Generosity of Strangers

A few weeks ago, there was a message in a special needs Facebook forum that I'm a member of where a friend was giving away a Tumbleform II chair with a wheeled base that her kids had outgrown to anyone who wanted it. I jumped on it with zero hesitation. For our family it was an answer to a prayer, more mobility for Matt outside of the wheelchair and that it wouldn't have to go through insurance to get it. Any parent with a child who has special needs knows how expensive medical equipment is and how insurance companies will go out of their way not to cover it.

Upon learning a little more about this chair, I found out that we are the third family to use it and that it has been well-loved. The first family who used it has a son with Cerebral Palsy. When he outgrew it, it was passed it to a family with 9 children, some of whom have special needs and all of them very much loved. I was blessed enough to "meet" their mom, Meredith, in a group for special needs parents and was immediately mesmerized by her family's testimony. She has a blog about her family, their faith, and homeschooling that I love, please stop by and check it out.

We made the hour drive to their home and felt instantly welcomed. I was so excited that I was finally going to meet them in person after chatting on and off for a few months. We didn't get all of the kids together during this visit because both Matt and their kiddos were all in various stages of illness and we didn't want to expose all of them to each others germs, but hopefully we can soon.

Matt loves his new chair, it is far less confining and restrictive than his wheelchair. He has especially loved sitting in it since we put up the Christmas tree because he can get closer and look at the lights.We are so thankful for their generosity and even more when those Facebook friends become friends in real life.

Monday, October 22, 2012

Viruses, Intussuspections and Adverse Flu Shot Reactions-Oh My!'s been a while since my last visit here.  Hopefully, I will be able to get this up and running like I always planned soon. Things have been a little chaotic in the last month with Matt in regards to health and schooling and of course, his needs come first and foremost.
Shortly after my last post about World Cerebral Palsy Day, Matt began having some problems in school. Prior to this summer, Matt had little to no contact with other kids outside our family and therefore had little to no contact with germs from the outside world. I know that once a kid starts school, it's only a matter of time before he or she starts sharing more than just crayons and toy trucks in class. So less than a month into the new school year, Matt came down with his very first virus ever and begins having issues eating and drinking. We played this game where I would take him to school and at lunch time his teacher would call me to tell me he's refusing to eat for a couple of days. I made an appointment to see his pediatrician, she told me to continue to push fluids and that there is nothing we can do but wait for it to pass. In the end, it passed and he was back in school the next week.
Two weeks later, we got virus # 2. By this point Matt had lost a pound and was having Salaam Spasms frequently from not being Keto-compliant, which he had not happened since he started the Ketogenic Diet. It was a constant fight to get him to eat anything and usually ended up in tears, both his and mine. We made another trip to the pediatrician and heard the familiar refrain, "It's a virus, there is nothing we can do but wait for it to pass." And it did pass and he went back to school the next week.
The following week, things got fun. Just to keep me on my toes Matt decided to bring out the bigger guns and brought home a sinus infection and an ear infection. So, back to the pediatrician we went. At this point Matt is down 2 pounds because he has yet to make up the weight he lost from not eating during the two viruses. Matt has a wicked allergic reaction to Amoxicillin which means the entire penicillin family is a no-go and the Ketogenic diet limits the method by which he can take antibiotics in that he can't take liquid or chewable medications because of their sugar content. His pediatrician and I went back and forth  through all the literature provided by Matt's dietitian and finally settle on Ceftin. We left with a prescription and a follow up appointment scheduled for the next week.
It would be nice to think that all of our fun ended there, but unfortunately for my little Monkey, it didn't . Apparently Ceftin has a nasty metallic taste, which didn't make Matt a big fan. In fact, no matter how we prepared it for him, as soon as the it crossed his lips he would immediately start to gag and throw it up along with everything else we had managed to get into his stomach. Within a couple of days anytime he saw a spoon or a bottle, he would clamp his teeth and lips shut and turn his head away and fight us with everything he had. Three days later, I got a call from his teacher telling me that he is once again refusing to eat and that he seems lethargic and has been sleeping most of the day. So, you guessed it, back to the pediatrician we go! She checks him out and then tells me that he is down 3 lbs., that he is dehydrated and sends us off to the ER for IV fluids. Afterwards, he seems to feel a little better and finally seems to be on the mend. At our follow-up with the pediatrician a couple of days later, he was feeling cruddy again and again we hear that he has a virus, #3 for those who are counting. By now, I've had more than enough. He has been in the pediatrician's office 4 times in about a month, more than he has seen her in the last year. After some discussion with Joe, the pediatrician and his dietitian, we decided that Matt is going to be a preschool drop-out for now.
That brings us to last week, the most interesting part of this little drama, so far. After a great weekend of eating, drinking, and pumpkin picking, Matt started getting a little picky with his food Monday. On Tuesday he began turning away from chicken nuggets, a sure sign that something was not right. I called his gastroenterologist and scheduled an appointment for Thursday because this seemed to be a little more than just a virus. Wednesday, he decided that he wouldn't eat anything solid, not even Jello, but he did drink his Ketogenic egg nog drink fairly well. On Thursday, I got him to take about 7.5 ounces of keto egg nog after many hours of fighting. I was panicking and worried by this time. I called our pediatrician and was awaiting a call back when it was time for us to take Matt to the gastroenterologist. We had a 3:30 appointment and by 4:00 we were still in the lobby waiting to be called, when all of the sudden Matt starts screaming in his wheelchair. I know his irritated cries, his tired cries, and his hungry cries, but in the two and half years of parenting this child, I have never heard a cry like this one come out of his mouth. I went to the reception window and told the receptionist that we were going to take him to the ER instead. His gastro heard the screaming and came out the exam room she was in to see what was going on. I explained the situation with her and she agreed the ER was the best choice for us at the time.
 When we got into the ER, our pediatrician returned my call and when I explained what was going on and she heard Matt still screaming. She called the hospital and spoke with the triage nurses and we were called within 10 minutes of entering the ER, we were in an exam room. It took the nurses 4 attempts to get an IV into him, and soon we were in another room and Matt was having an abdominal ultrasound. The right side of the scan went well, but as soon as the wand touched the left side of his abdomen Matt started screaming again. The tech was quiet and told us to wait in the room while she went to call the doctor to see if there were any further scans she wanted. About 30 minutes later the tech and a doctor came in and reviewed the ultrasounds and then asked us to lay Matt back on the table again to repeat some scans. After all scans were done the doctor turned to us and told us that Matt had what was called an Intussusception where the intestines can fold inward on itself, kind of like a collapsible telescope, and that he was extremely lucky because his Intussusception resolved itself without surgical intervention. The decision was made that Matt was going to be admitted overnight for observation in case the Intussusception recurred, and that if all went well and he ate and drank we would be released the next day.
Friday everything seemed to go better. After a dose of  "Magic Mouthwash" (Carafate, Maalox and Benadryl) to numb his red throat, he began to drink Keto-Cal with no problems. By the time the staff pediatricians made rounds, he had already drank 7.5 ounces and they were okay with us being released later in the day. And here is where I made my next mistake--I asked whether or not Matt could have the flu shot.
Matt has had the flu shot before and after the news story back in August stating that children with neurological disorders may be more likely to die during flu season, I didn't hesitate when it came time to decide whether or not he was going to get the shot. My biggest issue at that point was getting him well enough to get the shot, and the doctors and nurses told me that it would be no problem for him to get it done before we were released from the hospital.
Well, come Saturday morning we had a problem--a big, red, itchy hive problem. We jumped back in the car and headed back to the ER where my sweet boy was loaded up on Benadryl and Decadron and sent home. Today we saw his gastroenterologist to discuss further testing that he may need, and also, his neurologist to discuss whether the rash he has now is from the flu shot or possibly from an increase in his seizure meds. We are all leaning toward the flu shot as the culprit and tomorrow we see his pediatrician to get a referral for an allergist. Say what you want about our life, it is anything but dull!

Monday, September 3, 2012

What Having a Child with Cerebral Palsy Means to Us

Today is the first ever World Cerebral Palsy Day!

Matthew was formally diagnosed with Cerebral Palsy back in June. Part of me always suspected it, so I broached the subject with our neurologist and he agreed that he fit all the criteria and we added the diagnosis to the permanent record at that time.

So...what does having a child with Cerebral Palsy mean? Cerebral Palsy can vary from person to person, with the possibility of any number of symptoms. In Matt's case, he has stiffening of the arms and legs and he is immobile in that he cannot sit, stand or walk. We are still in the learning stages of Cerebral Palsy, but rather than talk about what limits Matt, I'd rather show you what having a child with Cerebral Palsy means to our family.

We work hard with our therapists

When we find a problem, we find a way to adapt it to our needs

We enjoy the little things

We find ways to make our work fun

 We work even when we'd prefer not to 

We meet new challenges head-on

And most important, we love  and support each other no matter what!

What does Cerebral Palsy mean to your family?

Matthew's New Wheels

The day I have alternately been looking forward to and dreading finally came--Matthew finally got his wheelchair.
I say looking forward to because the kiddo isn't a tiny little man anymore and my back is killing me. Thanks to the Ketogenic Diet he is on to control his seizures, he is weighing in at almost 30 pounds and he is outgrowing his stroller and high chair by leaps and bounds. At the same time I have been dreading this day for so long. The wheelchair is a big, bright red reminder that Matthew isn't able to walk, or run, or chase around his big cousins like he wants to. For us, it means we have to accept that  yet another dream we have for Matthew will be different than what we thought it would be.
He wants to get up and move around so badly. He rolls all over our living room, he tries to sit up and has even stood up on his own when sitting on a bench in therapy sessions. His last physical therapy evaluation showed great promise and twice weekly sessions have been recommended for him. Right now we're just waiting on an opening with a therapist at our rehab center or his school, all of them are fully booked with the new school year starting.
I am choosing to look at this as a positive thing, even though there are moments in this that hurt like hell. This chair will give Matthew so much more independence and freedom than his stroller ever did. Already his posture has improved, he is using the wheelchair tray to weight bear through his arms and hands, he is able to see his iPad better which will help when we start using our new AAC program, and he is loving that he is able to look around and see things that he hasn't been able to see before. I can't wait to see how he adjusts to the wheelchair and accepts it as part of his new normal.

Sunday, August 26, 2012

Weekly Wind-Up: August 26, 2012

This is the first in what I am *hoping* will be my first weekly article. These are little things that have popped in our life and in the media that caught my attention. Please feel free to comment and discuss!
This was the first week of school for both the hubby and Matt. The first day was weird not having him home with me, but I found ways to fill all the free time by cleaning and doing a ton of laundry. The rest of the week ended up being harder because I missed him so much and I will admit I left the school teary-eyed. All in all, his teachers said that he had a great week, that he barely cried, and the biggest shock of all--he's become a napper!
 Florida teacher Jaclyn Ockerman, who has been accused of slapping, pinching and forcibly pulling the faces of her kindergarten students with Autism Spectrum Disorder. Lake County School Superintendent Susan Moxley recommended her termination to the school board back in July. Ms. Ockerman is appealing her termination next month and has been pulled from the classroom and reassigned to administrative duties until her case is resolved.
Toys 'R'Us has released their 2012 edition of Guide for Differently-Abled Kids in stores this week. This year's edition contains a list of 100 different toys which have been evaluated and recommended by the National Lekotek Center, an center devoted to children with disabilities. Maybe if a certain little someone continues to be a good boy, Santa might pick one of these up to get some ideas for Christmas.
 We are three days away from the start of the 2012 London Paralympic Games! The games will be starting on August 29th and will go through September 9th, and will showcase the talents of 4,200 athletes. Unlike the 2012 London Olympics, NBC plans to show only 5 1/2 hours of programming in the United States,with the majority of coverage not showing until the competition is over. Daily highlight segments will be featured on the U.S. Paralympic team's YouTube channel.
I am going to be fulfilling a long-time goal of participating in the 2013 Polar Plunge at Aquatica for Special Olympics. I have been wanting to get involved with Special Olympics for many years from when my younger cousin began competing, and now being the parent of a child with special needs I am even more  In order to plunge I had to raise a $100, and as of today, I have now raised $170! So I've set a new goal of $300 and I'm hoping to reach and surpass it.  Can't wait to be freezin' for a reason!
Hope you all had a great week last week and are powered up and excited for the week to come!

Monday, August 20, 2012

First Day of School-- A Big Day for a Little Guy

Today was the kiddo's first real day of school at UCP. He went to the summer program two days a  week for 3 hours a day, but this is a whole new world for us. As of today he will be going to the toddler program for 6 hours a day, four days a week, all at the tender age of 2 years old.

I have been with Matt every day of his life, never spending more than a couple hours away for any reason. With his epilepsy and other health issues, I don't just leave him with anyone either. My in-laws are the only ones who have ever cared for him other than Joe and I until now. This is a big adjustment for me, learning to let go and trust others with my precious boy. Also, because for the first time in two years, I have no idea what to do with myself when I am not caring for him.

He was so excited when he got to his classroom, he saw the other kids running around and playing with toys while their parents were waiting to speak with the teacher. I emptied his backpack and filled his cubby, then sat him in his Rifton chair and kissed him goodbye. I knew that he wouldn't be staying the full class time today because we had a standing speech and occupational therapy appointment, but it was so hard leaving him.

I get a lot of questions from other parents as to why I have him in school so young. Most tell me, "Good for you! You need a break!" That isn't why we chose this path for him. We wanted Matt to learn life skills,to get supplemental speech and occupational therapies (hopefully physical therapy too at some point), and to be with other kids who are like him.

I will miss my little monkey, but I am so excited to see the progress to come! And hopefully this will mean that I will have more time to work more here :)

Sunday, August 5, 2012

Creating My Village

When I first found out I was pregnant, I was beyond excited. I was elated...I was nauseous... I was scared out of my mind. We had been trying to have a baby for about 4 years, and thanks to Polycystic Ovarian Syndrome (PCOS) we ended up with a negative pregnancy tests month after month. I had honestly thought that after that long we would never get pregnant. I was so scared of doing anything that might jeopardize this little blessing.

Within a day of the positive test, I was seeking out every single piece of pregnancy info I could lay my hands on, first being the Holy Grail of pregnancy books: What to Expect When You're Expecting.  I quizzed my mother, my grandmothers, my mother-in-law, our sisters, and basically anyone who possessed a uterus what their pregnancies were like. Armed with all their wisdom and experience, I felt like there was hope that I might not screw up my kid after all.

Five weeks into baby bliss, everything got turned on it's head and our little man began having seizures while my in-laws, Matt and I were in New Jersey visiting an ill relative.  To say that I was scared out of my mind would be putting it very mildly. Joe flew up as soon as he could to be with us and we spent the following week in a hazy hell of spinal taps, EEGs, and finally getting diagnosed with Epilepsy before we were allowed to bring him home. We had no idea just how much our lives were going to change.

All around me, my friends with babies had typical questions and concerns about their little ones. I had no one to compare our experiences to or ask questions about medications and therapies. As a result of our unexpected detour into Special Needs World and a hearty dose of undiagnosed Post-Partum Depression, I withdrew into myself and a few friends and family members dropped off our grid. I also suspect that more than a few of them were tired of hearing me complain about insurances and therapies. In their place we gained new specialists and therapists. I would see other moms bring their kids in for their appointments and we would smile and make chit chat, but never anything significant. And while we have tons of kids in both of our families, none of them have had issues quite like Matt's, so it was difficult for them to understand what was going on at times. I had never felt so alone in my life.

Shortly before Matt's second birthday we ran into a family we had met when I was pregnant . This time we had Matt with us and they realized that we had something very important in common: our kids had special needs. Their boys were older than Matt, but they had already been through a lot of things we were just now learning about. We bonded very quickly, trading diagnoses back and forth and finding out we had specialists and a physical therapist in common. The more we talked it felt like we felt like we had known them for years. I especially bonded with the boys' mom, Karen. Within ten minutes we had each other's contact information and Facebook information. I am so thankful we met them and that it brought me out of my cocoon.

Soon, I was like a special needs heat-seeking missle. I approached a mom in Target when I saw their kid was in a special stroller and start talking to her. That awkward exchange led to Matt's first play date. We met a family at SeaWorld and asked them about the model of wheelchair their son was using when we knew that wheels were in Matt's future and that led to another Facebook friendship. Karen introduced me to a group of special needs moms that she has been involved with for years and I jumped right in with them too. These are some of the strongest, most amazing people I have ever had the pleasure of knowing. They are amazing advocates for their children's healthcare and educational needs, they support each other when their kids are in the hospital, when an IEP meeting doesn't go the way it should, and even in the grief process when one of the kids get their angel wings. I know when things go wonky, they are always there to listen and send a virtual hug.

I am thankful to have so many people involved in our life that love us and love our kid. They have been with us and cried and prayed with us through scary times and they're the first to celebrate with us in happy times. I am humbled by the time and generosity they have shown us time and time again. They have become our family, our tribe, and we are more thankful for them than they will ever know.

Tuesday, July 31, 2012

Time Off

I never intended to go so long between my first post on here and the next one. Between taking Matt to school and picking him up, all of his therapy appointments last week and a much dreaded ophthalmologist appointment to follow up on his CVI issues, I have dropped some of the plates that I'm trying to spin. I am usually very organized and punctual when it comes to appointments, fueled by massive amounts of iced coffee and a manic fear of showing up anywhere even a minute late. I don't like letting things slip out of control and throw off the schedule. What's that expression again..make a plan and God laughs?

This week has been chaos because the kiddo is sick and that means no therapies and no school until he is feeling better. This is no easy task since he has been on the Ketogenic Diet for a month and all liquid over-the-counter meds are forbidden because of sugar content. I am lost without a schedule to follow now apparently. Since he is home we've been taking advantage of our down time to work on some skills his speech therapist wants to him to start recognizing and implementing. First is the "Get the/Give me the" rule, which works on two skill sets for him.  First, the "Get the..." rule works on his motor skills because he has to locate and grab the object, not so easy with visual impairment and poor muscle tone and grasping skills. Once he has the object in his hand, I put my hand out and tell him, "Give me the..." and let him drop it into my waiting hand. According to our superstar speech therapist, Miss Melanie, this will teach him to 1.) Recognize the object he is grabbing by name,  2.) strengthen his grabbing skills, and 3.) Teach him Cause and Effect, which we will need to master before we get  an Adaptive Communication Device down the road.

But, this week hasn't been all about the work. As much as I hate when he is sick, Matt and I both needed a break. We've been doing a lot of snuggling on the couch with a cozy blanket and watching all things Cars. Listening to him laugh when he sees Lightning McQueen and Mater is literally one of the best sounds in the whole world. I love this time with my little guy and it makes it worth all of the plates that I spin to keep him happy and healthy.

Tuesday, July 17, 2012

Welcome to Our Little Corner of the World

My name is Brandi, I'm a wife and stay-at-home mom, and this is my family:

My husband Joe is an elementary school teacher, although he is no longer in a classroom position. He deals with more of the testing and administration stuff now and he loves his job. We have been married for 10 years and have been together for almost 13 years. Two years ago, after dealing with many years of infertility and health issues, we were finally blessed with our beautiful baby boy, Matthew. Prior to Matthew's arrival I ran a school health clinic for 5 years and cared for middle school-aged kids with a variety of health issues. I loved my job, but as soon as Matthew was born everything changed and I became a stay-at-home mama.

Our life is a lot like every other families, and in some ways very different. We are first time parents of a child with special health needs. When Matthew was five weeks old we were visiting family in New Jersey when he began having unexplained seizures, as many as 7 in one hour while in the emergency room. Since we were so far away from our home in Florida, Matthew was admitted to the closest PICU for observation and testing. This by far, was the worst and scariest week of our lives. After a lot of testing and false diagnoses, we were discharged with an epilepsy diagnosis, a lot of medication, and orders to follow up with a neurologist once we got home.

As we would discover over the past two years, epilepsy was just the tip of the iceberg. We would learn a couple of months later that Matthew was born with genetic abnormalities. His third chromosome had micro-deletions and his fifth chromosome had a section that is inverted. A few months after that we learned after that he has bilateral mild-to-moderate low-frequency hearing loss and would need hearing aids. We went through a stint of plagiocephaly, where the right side of his head was flat on the back. He wore a molding band on his head for 6 months and it made some improvement on his head shape. In October 2011, he was diagnosed with microcephaly due to his head not growing according to normal rates for kiddos his age. Last month after a year of wondering, he was finally given a formal Cerebral Palsy diagnosis by his neurologist. There isn't any one diagnosis that we can use to explain all of his medical issues, so we just go on the best we can and keep living our day-to-day life.

This is the chronicle of our lives--the good, the bad, the messy and sweet.

Welcome to Mattyland!