Parenting Handbook

December 03, 2014

Parenting Handbook

Let's be honest, there isn't a book in the world that could capture all the aspects of parenting. No matter how hard physicians, therapists, and specialists claim they have all the answers to every parents dilemma we all know that life throws you curve balls that you can never be prepared for.

For a psychology class assignment, we were tasked with reading a book and presenting key aspects of the book to our class. Of course I chose a book that discussed special needs children.

What I found was a 8 chapter, 115 page book that was full of my very thoughts!

Jonathan Singer, provided important information to parents in his book, The Special Needs Parenting Handbook. His book provides tips on how to manage life with a special needs child and the various experiences parents of special needs children are sure to encounter. I highly recommend this book to not just parents with special needs children, but parents and individuals in general. I think that many can learn so much from this book.

After my presentation in class a classmate expressed that he had enjoyed my presentation. I gave him my blog address and thought to myself "you better update it then!".

I know that I have been absent since earlier this year, but the motivation to blog took a backseat.

There has been so much going on in our family, blogging no longer was a priority.

We celebrated Mylah's 2nd year of life and her 2nd Heart-versary this summer (July 5th). It was a beautiful gathering of our family and friends. The first year of Mylah's life I decided that I wanted her to have a summer party outdoors, so we made that happen. It was a luau theme complete with colorful lei's, a beach cake, and of course my favorite the Kona Ice Truck! We also collected new toys to donate to CS Mott Hospital.

Mylahs seizures seemed to resolve with the medications she received after her April seizure and we were happy.

She began a wean of her seizure medications in late August, but her body didn't seem to agree with the decision and 4-5 weeks into the wean she began having seizures multiple times a week. The months of September and October were extremely hard for us. We were in and out of the ER more times than I could count. The seizures were different than the ones she had before and now included cyanosis and apnea spells that resulted in us having to breathe for her for as long as an hour! At one point I was so upset at the number of seizures she was experiencing, I was convinced that she didn't have much longer to live because of the reoccurring seizures and blue episodes.

Very scary to say the least!

She was even life flighted from a local hospital to CS Mott Children's Hospital in Ann Arbor.

Those 2 months were extremely frustrating for our family. The seizures just seemed to take over our lives. I was so happy that Mylah didn't require her pulse-ox (I think of it as a tether), but it proved to be a lifesaver. We had to dust it off and now it's used every day, and she has to sleep with it on. Sometimes the seizures started while she was sleeping and the pulse ox alerted me to trouble in those late hours; a not so good alarm clock, but thankful nonetheless.

My frustrations at that time and still present is the lack of active listening by physicians. I wish that doctors understood that there are parents who know the ins and outs of their child's disorder and could probably teach them a thing or two.

What was extremely frustrating was miscommunication between multiple physicians, medical tests not performed thoroughly, and feeling that I wasn't being heard by doctors.

This adds so much stress to an already stressful situation.

There were a few times where I had to use my "not so inside voice" to get my point across and it's not something that I like to do.

We spent 5 days in the hospital for EEG monitoring in October and of course Mylah went from having seizures 2 times a week to 1 seizure that lasted "40 seconds" according to the physicians in the hospital. It was kind of weird that we were hoping she would have a seizure, but we needed answers. We still have questions.

Once again we have adjusted to this new normal of ours which now includes seizures. We know what we should be aware of and what to do; we don't panic nearly as much as we used to.

So I press on....... There is no other choice.

We are planning Christmas card pictures, and even bought the Elf on The Shelf! (I think I'm more excited than anyone else).

Mylah has been well. Her personality has changed a little, she gets irritable quickly but we just attribute that to her being so spoiled *wink*.

We celebrated her 3rd Thanksgiving this year!

Yes! THIRD!

Remember when doctors said she would never make it?! She's growing well and her physicians like the pattern her growth is taking. UP! She's moved on to 18-24 month clothing and a size 4 shoe! (I wear an 11 so I knew she would have a nice size foot). I'm happy!

The Special Needs Parenting Handbook indicates that you should Celebrate Progress, Not Perfection & Be Prepared, Don't Get Scared!

It's all progress in my book and now we are better prepared to handle these situations.

There are still days that are challenging but it's nothing prayer can't solve.

I'm extremely grateful to those who continue to provide support, words of encouragement, and pray on our behalf. We love you and will never be able to thank you enough.

Here are some pictures to update you!