And We're Back...

Just when we thought we were in the clear to unpack our hospital bags and settle into our new routine with the g-tube and pump, Matthew decided to throw us a new curve ball...

He pulled out his own g-tube.

Yesterday morning I hooked him up for his morning feeding and he began screaming hysterically. I paused the feed, vented him, gave him gas drops and it seemed to do the trick. Until I restarted the feed, then the tears started all over again.

We had an appointment to see his new gastroenterologist to follow up on the Nissen, g-tube placement and to see how he was doing on erythromycin for gastroparesis. I called and rescheduled because of his behavior wouldn't let me travel with him safely due to possible seizures.

I continued getting him ready to leave for our now later appointment and started to clean his g-tube site and change his gauze when I saw this:

I may be a newbie to this whole feeding tube thing, but I do know enough to know that it shouldn't look like that.

I called the nurse back to see whether or not to bring him in or go to the ER.  She advised to stop feeds and come in so the doctor could assess and then send us to the ER.  As soon as I showed the doctor the picture and he saw that the tube itself was not able to be manipulated, he sent us over to the radiology department at the hospital and had the pediatric surgery department that did Matt's initial surgery meet us there.

Radiology results were inconclusive, but when dye was injected into the feeding tube Matt began to scream again and his abdomen began to swell again. The surgeon consulted with the gastro team again and decided the next step would be a sedated endoscopy with both teams present to fix anything they found.

The procedure took about an hour, most of it involving sedating Matt. Sure enough, the endoscopy showed that Matt had pulled his tube hard enough to disconnect it. The surgeon jumped in to take out the bad tube and lucky for us, he was able to place a new tube in the same site as the previous tube with no further surgery needed. Thank God we caught it early, it could have turned into peritonitis and been fatal.

So, that all happened Monday afternoon and night. We have spent the past three days getting his feed schedule back to normal, treating pain from the procedure, and fighting off a tube site infection with antibiotics. With any luck, we will get sprung tomorrow.

Life with our sweet boy is anything, but dull!

Long Time, No Post

It has been over 2 months since my last post here. I've missed writing and hope that you've missed checking in on our little family.

I had all kinds of posts planned and in my drafts folder-- a Mother's Day post, a Father's Day post, a post about a rare and amazing date night for me and the hubby, posts about Matthew's amazing new school and his last day of school. All of those will come eventually, we've been busy lately.

About a month ago, Matthew began gagging and retching when it came to eating and drinking. Then the vomit would come. It would happen with solid food, with bottles of Keto eggnog, and even when we would touch empty spoons to his lips. After the retching and vomiting he would be all smiles and like nothing was bothering him.

 That was the start of our latest little adventure. One month that equalled 4 trips to the ER, 2 hospital admissions, firing our long-time Gastrointerologist and hiring a new one during a hospital admission, an NG tube, a pH probe, multiple x-rays, and my little guy being stuck at least 12 times for IVs. And another crappy part for me particularly was having to see the smug staff pediatrician who told me when Matthew was 6 months old that all of this was going to happen and that he would need assistance with feeding as he got older because "all kids with his kind of issues do."


The pH probe showed severe levels of acid reflux that his Prevacid wasn't even coming close to touching. Also when filling out his probe journal, Matthew's nurse suggested that I include all of the times he would have an episode of Infantile Spasms. Turns out those episodes were occurring exactly when his acid levels were the highest. The diet is controlling his seizures, now we may have an answer about the spasms.

And now here we are, 2 weeks status post a laproscopic Nissen Fundoplication and g-tube placement. I worked so hard with Matthew to keep us from getting to this point: working with a speech therapist and an occupational therapist on feeding, trying new textures, using a Nuk brush to get him to practice biting down. I so badly wanted to prove that smug doctor wrong.

 Even though he is feeling so much better now that his acid issues are resolved, part of me still feels like I failed him because I didn't work hard enough with him to keep him from needing the g-tube. Silly I know, because I know that a child needing a g-tube isn't a failure and that moms aren't failures because their kid needs one, it's just something in my head. Us moms have the bad habit of always blaming ourselves and saying we should have done more.

We just got home from the hospital on Monday. He actually was released from the hospital last Tuesday, but we were readmitted the very next afternoon due to gastroparesis and c diff. It has been a very long two weeks being in the hospital and an even longer month seeing your baby in pain. Now we are fighting insurance and dealing with home health companies to get supplies delivered and learning how to live life with a g-tube and a feeding pump.

For all of our readers who are still here, thanks for hanging in with us. If any of you are parents of Tubie kiddos, any helpful hints or product recommendations for a rookie mom?

Legacy of a Super Hero

It has been a week since our special needs community lost a true super hero. He was strong, courageous, and he left this world helping others. Super Gavin was just 5 1/2 years old.

 

 

Image Courtesy: Chasing Rainbows

 

 

I first learned about Gavin Leong through his mom Kate's blog Chasing Rainbows when I started blogging back in July.  I was just learning the ropes and started finding other moms online who I could learn how all this blog stuff works. Right away, I was hooked on Kate's blog. Our families had a lot in common--we both had been through years of infertility, both had undiagnosed non-verbal boys, and we do whatever it takes to make their lives better and to help them move forward in the world. 

 

Gavin gave me hope for Matthew's future progress. Kate and her husband Ed were told to take baby Gavin home and make him happy, clearly not expecting him to make gains. Kate sought out alternative therapies and fought to get what Gavin needed. In December, he took his first independent steps and completed the therapy goal of walking 5k, or 3.1 miles, in school. A few days before his last illness, Gavin began using a Big Mac button in school to request water. He was only beginning to tap into his potential and I will always miss seeing what he would have become. Gavin was a shining example that miracles can happen.

 

In his final days, Gavin touched the hearts and influenced the actions of thousands and thousands of people who he never knew. Kate's Facebook page grew from a few hundred fans to over 16,000 fans at the time I am writing this. As a group we held vigil with Kate and Ed, praying for the miracle we were all so desperately wanting for Gavin. And we cried and prayed together for strength for Kate, Ed and Gavin's younger brother Brian when it was clear that the miracle wasn't coming and Gavin was slipping away. I have never seen such an outpouring of love, prayers and support on Facebook before. It is truly amazing how so many people can come together to love and support a family that they don't even know.

 

Because of Gavin, children around the world got hugged tighter and longer, their parents knowing that life is fragile and that at any time any one of us could be in his parents' position.

 

Because of Gavin, people are learning more about organ donation. Kate and Ed selflessly donated Gavin's organs in hopes that others could be healed and that part of Gavin would live on. Thanks to Gavin, a 40 year old man who was in need of a kidney transplant will be getting more time with his family, more holidays, more birthdays.

 

In lieu of flowers, Kate and Ed set up a wish list of charities close to their family's heart that they wanted people to donate to in Gavin's honor-- the Nemours Child Life Department, Gift of Life Family House, and Caring Bridge.

 

 

Fly high, Super Gavin. Thank you for touching so many hearts and lives and for bringing out the goodness in so many people.

 

 

 



Three Years and a Million Miles

April 17th is a special day in our little family of three. Joe proposed to me on April 17, 2000, and after I called him a liar for tricking me, I said yes to marrying him.

And 10 years later, after a brief cancer scare for me and years of infertility, it was the day of our precious baby boy's first smile on his 5 week birthday. Matthew and I were in New Jersey with my in-laws to see Joe's grandmother who was very ill and had major surgery the day before. She was afraid that she would pass away and never see Matthew so we went to surprise her.

That same day our lives were forever changed when Matthew had the first of many seizures in just a few hours. The day we were thrown head first into the unknown. 

Matthew went through numerous CT scans, MRIs, blood tests, genetic testing, video EEGs,and 3 spinal taps in a week. They sat us down at a conference table in a tiny room and told us that Matthew's brain was shutting down for seconds at a time and when his brain was functioning it wasn't synchronized and working together. They gave us a grim prognosis of Ohtahara syndrome and released us after a week of being there. 

We were told a lot of different things by a lot of specialists that never proved to be true. Matthew doesn't have Ohtahara, his brain isn't shutting down and it did finally start working together. We were told that he would need a feeding tube, so we worked to find him excellent occupational and speech therapists to help us with feeding issues. His favorite foods are now chicken nuggets and macaroni and cheese, just like any other kid his age. He does occupation and physical therapy at school and at an outside rehab center. He works with a vision teacher to improve his tracking skills and with a teacher of the deaf and hard of hearing. He rolls all over our house, he dances in his gait trainer and he flirts shamelessly with every woman he meets. He loves Cars (especially Mater), Mickey Mouse Clubhouse, cars and trucks, and music. He has exceeded all we were told his life would be and continues to work hard every day.

He is our miracle.

The Not-So Scary Pre-K IEP Meeting

The day I have been dreading for the past two and a half years came last week: the dreaded Pre-K IEP meeting. I have never heard of one positive IEP meeting. There are whole threads of warnings to bring an advocate and not to sign it if we were concerned about the terms of the IEP. There are tons of horror stories on Facebook. Before Matthew was born I ran a school clinic, so I was on the other side of the table in these meetings. Now I am a mom to a little guy who has a very specific set of needs. How would I know if I made the right decisions for Matthew? What if I accepted the terms and I should have asked for more services?

A week before the placement meeting, I took Matthew in for an evaluation with his Vision Impairment teacher, a Deaf/Hard of Hearing specialist, a physical therapist, an occupational therapist, a speech therapist and a placement specialist. We went over his entire birth and health history--super easy with the cheat sheets I have made up listing diagnoses, medications, doctors, and his allergies. While we were talking Matthew was in his wheelchair flirting and jabbering with all the ladies in the room and batting at the toys they put in front of him trying to gauge his actions and responses. My take on these evaluations is that you want your kid to show what they can and cannot do so that they qualify for school based services, but not do it so well that they get less services or no services at all. If I'm wrong, that's just my impression.

In the end he knocked their socks off. He was happy for the most part, but did get to see a tiny taste of one of his meltdowns. He smiled and palmed and batted at toys. He played with some of his OT apps on his iPad. He rolled around on an exercise mat on the floor for the physical therapist. He even mimicked sounds to his vision impairment teacher for the first time ever. They took their piles of notes and said that we could reconvene in a week to decide where he would be going to school.

I was so nervous the morning of the placement meeting, I told Joe the wrong time and we showed up an hour early. We sat there playing blocks with Matthew while other parents and kids came and went, all the while waiting to determine Matthew's fate. We had been told there were two possible schools that could accommodate his level of needs: one about 20 minutes from home, the other over an hour away. We have refused bus transportation so I will be driving him and picking him up from his half day sessions.There was no doubt we wanted the closer school. Even more than that, after our last school experience, I wanted a place that I could trust with Matthew. The closer school has a few more pluses going for it, Joe is on good terms with the assistant Principal because his kids used to go to Joe's after school program. Also, Matthew's deaf/hard of hearing instructor goes there to work with kids once a week, so I know she would watch out for him.

We went over everything we had talked about in the evaluation and they gave us their recommendations for services. He was approved for vision services once a week for 30 minutes, deaf/hard of hearing services once a week for 30 minutes, language services twice a week for 30 minutes a session, occupational and physical therapy services twice a week for 30 minutes a session. Best of all we got the school we were hoping to get and Matthew will be able to attend the morning session so that we can keep our outside therapies going.

Was this a good meeting? Could we have gotten more services? I don't know. I do know this was more than he was getting at his previous school and I have been trying my best to do at home since he left the other school in January.  I am feeling a little more at ease at sending him back to school after Spring Break. All I can do at this point is have faith and stay involved.

At A Loss for Words...But Not Anymore

Saturday morning I couldn't wait to get out the house. I have been sick with the flu and then bronchitis for three weeks and on a ton of meds. I have not left the house except for Matthew's therapy appointments, preschool evaluation and side trips to Wal-Mart to restock on tissues, tea and Mucinex. To say I had a serious case of cabin fever would be an understatement.

A certain little boy will be turning three in the next couple of weeks and I am so behind on party planning and shopping. Armed with my always present list, we were off to our local mall to tackle the hardest item--buying Matthew's birthday gift. I was a girl on a mission.

The trip was pretty much a bust so we decided to leave and shop for the party supplies instead. Matthew was having a great day out--he was smiling, looking around and baby babbling away. All was right in our little world.

When walking through the food court to our exit, a kiosk worker stepped out and attempted to lure us over to check out the toy he was selling. I politely told him no thanks and kept pushing Matt toward the exit. He stepped out and blocked the path where I was pushing Matthew's wheelchair and dropped this bomb on me:

"Come on lady, your kid is autistic and you won't even let him look at my stuff?"

I froze stiff. Did I just hear him say what I thought he said?  Was he implying I was a bad mother? When in the world did it become acceptable to target a disabled person as a sales pitch?

I spun around and looked him, ready to lose it big time, all while Joe was pulling me by the arm to the car. The only thing I could get out of my mouth was to keep asking if he really said what I thought he said. I think he was equally in shock. He has heard me complain before about how people treat those with disabilities, adults always being far worse than kids. I am used to people staring at Matthew, usually I just stare back. I have never experienced such coldness and horrible treatment as this. Joe got Matthew and I into the car and went back into the mall and filed a complaint with guest services and requested a follow up call to find out what steps will be taken in disciplining this person. I will write a follow up post about what comes next.

I came home, still in shock, and posted the encounter on my private Facebook for family and friends. Not really surprising, the responses ranged from outrage, those who wanted to pay the guy a visit to show him what they thought he could do with his comments and generally a lot of love for Matthew. What was surprising to me were the amount of comments telling me to just ignore what happened and comments like that. Well, that isn't going to happen. I'm only getting started in finding my voice in advocating for Matthew.


**As of 3/5 we have received a phone call from the owner of the kiosk, who received our 
  complaint from the mall manager. She apologized profusely and stated that he will be
  removed from his position. We didn't ask for his dismissal, it was the owner's decision. 

Trust Issues

I have been off the writing grid since early January. I have popped in from time to time to check comments and reply, but my heart hasn't been into writing.  I have been feeling pretty low and not really sure what to write. So, here it goes:

Shortly after my last post, we decided to take Matt out of  his Early Intervention charter preschool permanently. This was not a rash decision and everyone who initially questioned our decision now agrees we did the right thing. I know we did the right thing.

We should have taken him out much earlier than we did, instead we trusted those who should have had his best interests at heart. They know why we removed him and they couldn't even argue our decision. My biggest regret was not approaching administration when the situations arose. Although given their attitude and suggestions on how to handle this situation, I know nothing would have changed and I would have been a nervous wreck leaving him at that school every day.

I have been working with him at home on activities that he was doing in school and he is now doing things that even they couldn't get him to do--like propped sitting and taking steps in a gait trainer. He can sleep as late as he likes since he has been having trouble staying asleep at night,he has an Early Intervention therapists coming to our home to work with him, he has had less Salaam spasms and seizures, and is generally a much happier little man.

Just when things are finally settling down and I have gotten him into a routine, it is now time for us to make the transition from an IFSP to an IEP and for him to start attending preschool at a one of our local public schools. And I'm a nervous wreck.

I don't trust anyone with Matt now. I don't know how I am going to leave him with anyone-- he can't tell me if someone is mean to him, if someone hurts him, or if someone neglects him. I was involved with the other school. I showed up at unexpected times to check in on him and to pick him up for doctor's appointments. If he can be treated poorly when I was doing all of that, it can happen anywhere.

Thanks to our pitiful health insurance, the only way he can receive speech therapy and any help with communication technology training is through the public school system. If money and insurance weren't a factor, I would rather have him home with me, but it's out of my hands at this point in time.

If any of you have non-verbal children, have you had any situations arise in school where your child wasn't treated properly? How did you trust others to care for your non-verbal child?

Thankful Thursday: A Sibling's Love-- Guest Post by Team Aidan

Today is our very first guest post and I am so excited. On Sunday I shared an article with you via Team Aidan, one of my favorite blogs, written by Heather's older son Liam. It is important that we remember that having a child with special health issues does affect the entire family. Please read, comment, share, and send Liam some love.

My son Aidan is 11 years old and has an undiagnosed developmental disability. He is non-verbal, uses a power chair for mobility, and requires total care for tasks of daily living. As many of you moms of kids with with special powers know, disability effects the entire family. My 13 year old son Liam is a wonderful big brother and gifted writer. He recently published an article in Pediatric Nursing about living with a sibling with a disability. Below, Liam describes his experience of Aidan going to the hospital for a VEEG (video-EEG test to diagnose seizures). This is Liam's story; it's very different from my perspective and that's important for all of us to remember. His voice matters too.

This was one of the scariest times of my life. It felt like a giant hippopotamus was about to fall on me. My mom and Aidan went up to Portland for the test. It was an overnight study and they were only supposed to stay for a night. My dad went to work like normal that morning and I went to school. When I came home from school, my friend’s dad was there to pick me up. The plan was that I would go to his house and stay the night while my dad stayed at the hospital with my brother and my mom. After dinner I got a phone call from my mom saying that she loved me and that everything was going smoothly and she was having dinner. I went to sleep knowing that tomorrow when I came home everyone would be home and we would know if it was epilepsy or not.

In the morning I got up, had breakfast, put on my coat (it was January), and got in my friend’s dad’s truck to go to school. When I got home that’s when things started to go wrong. Instead of my parents being there, nobody was there. It was as quiet as a ghost. I was used to being home alone and I figured they were just running a little late. After about fifteen minutes my dad’s car pulled into the driveway. I ran out to meet him, a little nervous about what I was going to hear.

“Hi Dad, where are Mom and Aidan?” I asked.

“It turns out they need to do more tests,” he replied, “You are going to have to come up and stay the night and miss school tomorrow.”

I went into the house to pack a bag for the night; clothes, toothbrush, toothpaste; all accounted for. As we were about to leave, my friend’s dad pulled into the driveway and told us that they were able to take me for another night. When my dad offered me a choice of where to go, I instantly chose my friend’s house.

That night I was glad I chose my friend’s house because it was fondue night. The chocolate bananas tasted like heaven. I ate a little bit too much and at three in the morning I puked. Fortunately, I made it to the bathroom in time. However, I decided to stay home that day. It turns out that I didn’t need to for two reasons; one, I was better in the afternoon and out sledding, and two, school was cancelled. I didn’t find out until the next day that school was cancelled so it was all good.

My dad called later that day to say that he was going to come back home the next day and that my Mom and Aidan would have to stay for two or three more days. I went to school the next day and when I got home my dad was there. I was flooded with relief. The next two days were mostly spent waiting for any important news. My dad went up to visit on one of those days. Finally, on Sunday, Aidan and my Mom came home. I was so relieved. We still didn’t have the results though. We had to wait another few days before they came in and then it was confirmed that it was epilepsy. The diagnosis did not effect me as much the anxiety of waiting for Aidan and my Mom to come home. I knew that he would still have seizures no matter how he was diagnosed. To this day I have never liked when relatives stay at the hospital for extended periods of time.

When Heather is not juggling the myriad tasks involved in raising a child with special powers, she can be found singing in her kitchen using a spatula for a microphone or blogging at Team Aidan.

Seven Saturday Snippets: January 12, 2013

--- 1 ---

The first week of following a blog schedule has been a relatively big success for this little site. I kept up with most of my planned days, with the exception of Thankful Thursday, which got derailed thanks to fighting insurance companies over therapies, a post for another day.  Thanks to link ups with Ellen Stumbo, Andi at Bringing the Sunshine, and Ellen at Love That Max, I have had over 600 page views and gained some new followers. I am so excited! If you like what I'm doing, please subscribe.  I also have a Facebook page, a Twitter account, and I'm also on Pinterest. Please stop by and join :)

--- 2 ---

I cannot tell you enough how much I am looking forward to starting the Mommies of Miracles/Different Dream Book Study this week called You Have Time to Read? This inaugural book study, A Different Dream for My Child  by Jolene Philo, will be spread out over a 12 week online course. For more information, please visit the Mommies for Miracles page at http://www.mommiesofmiracles.com/resources/book-study/.

--- 3 ---

Thank you so much to Heather at Team Aidan for sharing a wonderful post about her older son Liam. Liam became a published writer last week when his editorial for Pediatric Nursing Journal about life as an older brother to a child with special needs hit the stands. This post was especially touching to me, mostly because I wonder what Matthew's life would be like if he had a sibling and how having a sibling with special needs would impact them. Please stop by Heather's blog and read Liam's editorial, not only will you will be touched by his love and devotion to his brother Aidan, but you will also get to meet a young man who is wise beyond his years. I am also very excited to say that Liam will be doing a guest post here in the very near future.

--- 4 ---

For the first time since 1995 when Heather Whitestone won the title, I am motivated to watch The Miss American Pageant. Why? Because for the first time in pageant history a contest with Autism will be competing.  Alexis Wineman, Miss Montana, was diagnosed with PDD-NOS at the age of 11 and faced taunting and bullying due to her condition. Her pageant platform is "Normal Is Just a Dryer Setting" which I LOVE. She didn't make it to the crown, but she did get picked for the top 16 and raised a lot of awareness for Autism.

--- 5 ---

One of my favorite stories of the week is about Evan Moss, an 8 year old with Tuberous Sclerosis and Epilepsy, who wrote a book to raise money for his own service dog. Evan raised  $42,000, enough to fund his service dog Mindy and to help 7 other families. You can visit Evan's blog Dog 4 Evan to learn more about the service dog placement process



--- 6 ---

I just saw this post tonight on one of my new favorite blogs, As We Seek, So We Shall Find, and I love it so much. In the beginning of our journey into "Special Needs World", I have never felt more alone and out of sync with life than I did at that time. And sometimes still do, but it's much better than it was then because I have people I can turn to and talk to who understand what we're going through.  I wish I had been given this post, that I had known someone who could have sat down and talked to me, someone who would have listened and let me break down and get all of the ugly thoughts out of my system. I hope that by sharing Mags' post, someone who needs this letter will see it.



--- 7 ---



This week the biggest news in our house is that Matthew finally got his gait trainer! He has been using one in therapy for a couple of months now and is definitely not a big fan. Needless to say he was not thrilled when our favorite mobility man, Sam, came in with one yesterday morning. The first time getting in the harness went as well as expected, but the second time magic happened. He realized he could move and took two steps back and started dragging his feet to move to the side. It will be so much easier when he gets his knee immobilizers, but his journey to movement has started and with more than a single step.

For more Seven Snippets, visit Bringing the Sunshine!

Wordless Wednesday: 1/9/2013

The picture below was taken a few days before Christmas at Matthew's school. It is a mural honoring the children who lost their lives at Sandyhook Elementary School. There is an angel for each of those 20 precious lives.

Even almost a month after this unbelievable tragedy, I still have no words.

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.