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.

Turtle Power

It started innocently enough. Matthew and I were up early on a Saturday morning, Joe was out running errands, and I was desperately needing a break from endless episodes of Jake and the Neverland Pirates. So, I fired up YouTube in search of cartoons from the eighties that Joe and I grew up watching. 

He was not impressed with the awesomeness of The Muppet Babies, showed a fleeting interest in A Pup Named Scooby Doo, and he flat out dissed The Smurfs.  Then I remembered a gem that my younger brother John was obsessed with when he was around Matthew's age....The Teenage Mutant Ninja Turtles.

As soon as the theme song started, Matthew was enraptured. Three episodes in, I forgot how much I hated this show when I was younger and started getting into the Turtle Power. Joe came home and got hooked too. It was fun seeing Matthew so into something, when historically, he could not care less about anything we buy or show him.

The next day we went to Nonna and Nonno G's house for Sunday dinner. While we were there they remembered that some of Joe's old Ninja Turtle toys were still in the attic, so they gave them to Matthew. It was love at first hug.

It was all downhill from there. His outfits took on a new theme.

If he was going to have the big Ninja Turtles, of course he needed Donatello and Michelangelo to play with. They would help his OT skills we convinced ourselves. 

Then I found the two he was missing at Target. It was only right that he have Leonardo and Raphael to complete the whole Teenage Mutant Ninja Turtle Team. 

We even took him to see another example of Michael Bay stealing our childhood by seeing the new Teenage Mutant Ninja Turtle movie. He laughed and squealed when the turtles came on the screen.

   

   

And I may have gone a teeny bit overboard contributing to his obsession.

Best of all is seeing this gorgeous, happy smile showing us how much he loves all of it. Seeing him into something, anything, is thrilling. For a kid with no words, the smile really says it all for him.

What are your kiddos into? Any obsessions?

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.

  

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.