Why I Write

I write because I have a voice and things to say. I write because my little boy cannot speak for himself.

I write because I was so alone when he became sick and our world turned upside down.

I write to not hold things in. I write to make myself strong for him.

I write so that maybe someone will see this and maybe not feel so isolated and reach out. I write because words are powerful and can build community.

I write because I survived dark times, survived hearing the worst possible scenarios from doctors laid out on tables like a losing hand of cards. I write because he proved them wrong.

I write to fight, to advocate, to challenge and to dispel myths. I fight his dragons with words and actions rather than swords.

I write because I want to make a difference.

Seven Saturday Snippets: January 5, 2013

This is my first ever post to the Seven Snippets link up which is hosted by Bringing the Sunshine. If you have not had the pleasure of visiting this great site and meeting Andi and her gorgeous family, you are in for a treat. Not only is she a great writer, but she is also an amazing photographer. Please stop by and show her some love!

~1~

While visiting Bringing the Sunshine yesterday and reading Andi's Seven Snippets, I saw that she posted a link to site to generate the name of your patron saint for the year. I am a converted Catholic and I love learning about the lives and history of the saints and as much as I can about my faith, so I thought, what the heck, let's see who my patron saint for this year will be...St. Dymphna, the patron saint of neurological disorders among other causes. Very appropriate given Matthew's epilepsy diagnosis...hopefully this means good things coming our way, not more challenges.

~2~



As mentioned in my last post, one of my resolutions for 2013 is to write on her more regularly and hopefully gain some new followers. The best way I think that I can do this is to set up a schedule of posts and when they will be up. Here's what I'm thinking right now:

Monday- Writing Prompt via Ellen Stumbo
Tuesday- *still undecided and open to suggestions*
Wednesday-Wordless Wednesday
Thursday-Thankful Thursday
Friday-Friday Faves
Saturday-Seven Saturday Snippets

I'm not posting on Sundays, because that's family time :)

~3~

Mommies of Miracles is starting a new virtual book club starting January 14th called "You Have Time to Read???"  I am big fan of Mommies of Miracles and all the work they do to provide a sense of virtual community to parents who are trying to navigate their way through the world of special needs and caring for medically complex kids. I am super excited about this new project they are starting and have already signed up to participate. I'm a big book junkie and that fact added with one of my favorite special needs resources is just a big bucket of win.

The first book up will be A Different Dream for my Child by Jolene Philo. A writer and speaker about special needs parenting, Jolene has a wonderful website, www.DifferentDream.com, where she helps connect special needs parents with resources they are searching for. She is one of the kindest people that I have encountered in this whole blogging and writing journey and I have her words of encouragement taped to my laptop so that they are there when I start doubting what I am doing in this journey. Her other book, Different Dream Parenting was a life raft for me when Matthew was first starting to get sick and we were learning more and more diagnoses and I'm happy to say that I passed it along to another mom who was just starting to venture into Special Needs World. I can't wait to read this book. 

The inaugural "You Have Time to Read???" book discussion group will be broken over a 12 week course complete with study questions . More information is available at  www.mommiesofmiracles.com/resources/book-study/

~4~

In an effort to step out and find some time to develop some new interests, I signed up for a Sewing Basics 101 class at our local fabric shop. I LOVED it! I can't wait to sign up for the next in the series where you learn to sew garments with elastic. I'm sure Matthew can't wait to be my model.

  

~5~

Tomorrow the hubby and I are hoping to have a movie date so that we can finally see The Hobbit. I say hope because we have been trying to go out alone together for months, but something (or a little someone) always changes our plans. If we can pull this feat off, it will be our first time out alone since The Hunger Games came out in March of last year.

~6~



I am thrilled that today I made my fundraising goal for the Special Olympics! This is my first year participating and I was able to raise $320. Aquatica will be chilling down their wave pool so that 104 other teams and myself will take an icy dip to earn all of the money we've been collecting. This event has already earned over $69,000 for Special Olympics Florida.

~7~

It's getting to be close to time to start planning a certain little boy's third birthday party. This year's theme will be Superheroes! Dad is super excited because I've finally picked a theme that is in his wheelhouse of experience. Guess I'll be haunting Pinterest from now until March trying to find all of the fun stuff that a party needs.

I hope that you all have a great weekend and stop by to visit next week!!




Reflections and Resolutions

This post is up later than I hoped it would be. Between the holidays and house guests, I am lucky I remember my own name right now, let alone how to do this blogging thing. This has been our best family holiday so far. Matthew showed an interest in all our lights and decorations, got to see Santa four different times without freaking out and even tolerated touching the wrapping tissue paper on his gifts when we were unwrapping them. Given all of his new sensory issues, I am considering this year's Christmas a big bucket of win.

2012 was a so-so year for us, more good than bad, but it was still pretty interesting at times. 

January we lost a beloved grandfather and great-grandfather and celebrated a wedding

February brought a diagnosis of Moderate Obstructive Sleep Apnea and Matthew's first surgery with an overnight hospital stay. We also got our first pair of Ankle Foot Orthotics to stretch out our Achilles' tendon and stabilize our ankles.

March was our sweet boy's second birthday and a big three day Disney celebration. We love Mickey!

April Matt got new teachers to help us with progress in Vision and Deaf/Hard of Hearing and began using a stander to strengthen his legs. He also passed his swallow study and got to start eating more solid age appropriate foods. Hello chicken nuggets!!

May I got spoiled for Mother's Day by my guys.

June brought us a new diagnosis of Infantile Spasms and the start of the Ketogenic Diet where we learned to love heavy cream and lots and lots of eggs. The big news is that Matthew started pre preschool!

July we got to hang out and have family time at Lowry Park Zoo and Legoland Florida. It was also the month that this blog started and I got to meet a lot of new friends :)

August Matthew ditched the crib rails and moved into a big boy bed and got his first wheelchair

September had Matthew starting school full-time and had me getting more creative and desperate when scheduling outside therapies and doctor's appointments.

October brought lots and lots of viruses, ER visits and a hospitalization. Also Matthew got to be a super cute pirate for Halloween and use his iPad and an ACC app to trick-or-treat.

November was Epilepsy Awareness Month and we went to events with the Orlando Magic and the Orlando Solar Bears to bring awareness and raise money for the Epilepsy Association of Central Florida. We also had our first Very Ketogenic Diet Thanksgiving.

December was our 11th wedding anniversary and of course Christmas. Lots of family time, lots of shopping for gifts and lots of Santa visits.


Sounds exhausting right? All in all, it was a good year and it went by way too fast. I can't wait to see what this coming year brings--a new niece in February, Matthew getting his first gait trainer, and new hobbies starting that have the potential to become a business. Lots of good stuff. There are some things that have been on my mind for a while and since this is the season of new beginnings, I think this is the perfect time to bring them out and see if I can finally make a New Year's Resolution stick!


In this new year I want to commit to the following:

1.   Recommitting myself to helping Matthew achieve his goals, whether he knows what we 
      are doing or why. With his schedule, we are constantly on the go--school, therapy, in-
      home work with Vision and Deaf/Hard of Hearing instructors and all his doctors
      appointments, by the time we get home we are both exhausted and irritable. I admit  
      that I am too lax at times on following through with all of the work I should be doing to 
      help him and that opting for the easy way isn't serving either of our best interests.

2.   Spending more time volunteering at Matthew's school. We had the best time hanging
      out with all of the kids in his class at the holiday party before Winter Break. I loved
      seeing my little man hanging out with his buddies in Circle Time and to see what sparks 
      his curiosity in learning new things. I also got to see firsthand that he is a ladies' man
      and that he had all the little girls in class waiting on him hand and foot and giving him
      kisses.

3.   I want to devote more time to blogging. When I started this blog back in July, I had
      definite plans in place regarding the topics I wanted to write about, how often I wanted to
      post, and that I would gain tons of followers. Due to Matthew's repeated illnesses and
      hospitalizations, it made it hard to follow any set schedule. So far, I have over 1,200
      readers and 4 followers find this little family blog, and that makes me very happy. I have
      refined my blog plan and have met some awesome fellow bloggers that have inspired
      me to step up my game and work to get this blog where I hope it will be an asset to
      other families and make some new friends along the way.

4.   In a December post called When Parenthood is Hazardous to Your Health, fellow
      special needs mom writer Ellen Seidman shared an article that found parents of 
      children are more likely to have high blood pressure. I am a member of that club--
      I'm always on the go with Matt, deal with constant stress from his health worries
      and I have gained more weight than I ever have at any point in my life,including
      pregnancy. Matt is getting bigger and stronger and I'm starting to feel the pain when I
      pick him up or hold him for too long. It's time to put on my own oxygen mask and get 
      myself in better shape so that I can care for him in the way he deserves for a very long
      time. I hope that by my sharing this weight loss and health improvement journey, other 
      parents will join me and take steps to improve their own health.


Change isn't easy, but I am feeling confident that these are goals I can attain. Also, sharing with friends will help keep you accountable, right? That's what I'm hoping, so visit often and see if I keep up with my goals.

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?

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.

Viruses, Intussuspections and Adverse Flu Shot Reactions-Oh My!

So....it'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!