A Review of the Caregiver's Notebook

A couple of months ago, I was given an opportunity to review a promotional copy of Jolene Philo's new book, The Caregiver's Notebook. I jumped at the chance to get my hands on this book. I found Jolene's previous books, Different Dream Parenting and Different Dream for My Child, when Matthew was still a little guy and we were first entering "Special Needs World." These books were a lifesaver to me in the dark lonely days at the beginning of our journey. I had no doubt this new book was going to be just as enlightening and useful to our family.

I was definitely not disappointed. This book is such a blessing and I wish I had this when Matthew was smaller and first having all of the tests. As a mother of a child with health issues and the daughter of disabled father, Jolene thought of EVERYTHING parents like us need to have in a caregiver notebook. 

I love the arrangement of this book, from suggestions how to use the book down to a Bible reading plan and prayer guides to help heal our spirits and battle our feelings of helplessness as caregivers who might not see results of all that we do for our loved one.

Cosmetically, The Caregiver's Notebook is beautifully produced in warm soothing colors, it is solidly designed and will fit into a purse or diaper bag with no problems. There are enough pages in the calendar section to last three years, so you won't have to re-copy information every year on a new calendar.

All in all, I cannot recommend The Caregiver's Notebook enough. It isn't only for parents of chronically ill children, it would be immensely beneficial to adults who are now caring for their aging parents and other relatives.

The Caregiver's Notebooks is available through 

•       Amazon •       Barnes & Noble •       Christian Book Distributors

Jolene Philo is daughter of a disabled father, and she parented a child with special needs. She’s a former educator with 25 years of public school experience. Her books related to special needs include the Different Dream series and The Caregiver’s Notebook. Her blog,www.DifferentDream.com, offers practical resources and spiritual encouragement for caregivers. She also a guest blogger for Not Alone at www.specialneedsparenting.net and Friendship Circle of Michigan at www.friendshipcircle.org. Jolene speaks frequently at special needs and foster care conferences around the country and conducts special needs ministry training workshops for churches. She and and her husband Hiram live in Boone. They are parents of two married children and grandparents to one adorable toddler, with two more babies on the way. You can connect with Jolene on Facebook (@A Different Dream for My Child), (Twitter( @jolenephilo), 

Pinterest (JolenePhilo), LinkedIn ( Jolene Philo), and at her websites,www.DifferentDream.com and www.JolenePhilo.com.

Disclosure Notice: I received a promotional copy of The Caregiver's Notebook from the  publisher, all  thoughts and opinions are my own.

Still Here

365 days...one whole year.

That's how long it has been since I sat down to write here.

In that time we had new babies born in our extended family, we lost family members we love. We started a new school year. We had a grand total of 4 hospital admissions last summer between June and September.

And on that last admission on September 13th, we darn near lost our boy.

He went into cardiac arrest while we were admitted into ICU for hyperkalemia, so I guess if it had to happen that was the best place for it to happen. The hospital team was amazing and jumped in and did everything they had to do to help him.

He was in Joe's arms smiling and flirting with nurses one minute, and in v-tach the next with people rushing into his room. They were so focused on treating him that no one realized we were still in the room watching their every move, crying hysterically.

After what seemed like forever, the doctor who had been treating him that shift came and saw us and had us step out of the room and Matthew was put into a medically induced coma for three days.

We never got a reason for what happened, every medical test done during the two weeks were in ICU and special care came back negative or normal. The ICU staff began calling Matthew the "International Man of Mystery." The closest thing we were able to come up with was that it was a side effect of his being on the Ketogenic Diet. So we stopped doing the diet which had kept him seizure free for almost a year and a half at that point, and his myoclonic episodes came back almost immediately.

Seeing what happened to my baby, and running through all the "what ifs" really messed with me afterwards. I began having panic attacks more frequently, I didn't want to let Matthew out of my sight for school, and I began even more vigilant and was afraid to sleep at night for fear it would happen again. Helicopter Mamas had nothing on me.

It has taken this long to be able to put this behind us, somewhat. I wasn't able to write out the words and wasn't even sure if I should have continued the blog. I missed the friends I made here, I missed the sense of community of people who "get it" when it comes to our kind of extreme parenting.

I hope we haven't stayed away too long, that you will come back and join us for the ride.
We were lucky, so darn lucky. Our boy is still here.

  

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. 

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.

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!