Category Archives: Special needs children

Baby Josiah

Faith & Hope, Parenting, Special needs children

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Hopefully baby Josiah will be making his appearance in the coming days. I went to my doctor Monday for my 39 week check up and I was dilated to 4 cm! I’ve been slowly dilating for a couple of weeks now and I’ve been talking with Laynie about what that means. So on my way out the door to the appointment she told me- “Good luck mom, I hope your uterus is…ummm…expanded.”  I didn’t correct her. I figured she was close enough. Can you tell we use proper terminology around here?

I love our big girl. She is wise for her age. Several weeks ago, we were driving, when out of nowhere she said, “Mom, baby Josiah has a 25% chance of being like Gideon.” I breathed deeply and told her she was correct. After a few moments of silence she spoke up again and said, “But mom, that means baby Josiah has a 75% chance of being like me.” I smiled and said, “Yes baby. And which percentage is bigger?” To which she replied, “Oh no, that means baby Josiah is for sure going to get into ALL my things!” (Unlike her brother Gideon, of course.)

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We are extremely excited to welcome this new addition to our family. Clearly there are some genetic risks involved. However, since Gideon has been such a blessing to our family, we decided it was a risk we were willing to take.

So over the next week, I welcome your prayers for a few things-

  1. I’m planning on having a VBAC. My prayer is that it’s successful because I cannot fathom the recovery of a C-section while caring for baby Josiah AND Gideon.
  2. While we are willing to accept whatever the Lord provides, clearly we would like prayers that baby Josiah is healthy and free from the genetic disorder (PBD) that affects his brother Gideon.
  3. Sanity as we navigate how to do life as a family of five. I know people do it all the time, but with Gideon’s special needs, I feel like it’s going to be tough at first as we juggle feeding schedules between baby Josiah and his big brother.

Thanks for following our journey. I’ll post photos on my blog as soon as Josiah arrives. While I think we will know right away if baby Josiah is affected by PBD, the results from his blood work will take a couple of weeks to confirm. Thanks for your patience as we await that news.

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Update on Gideon’s Seizures

Parenting, Special needs children

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So here is a brief update on Gideon’s seizures… Last time I wrote about his condition, we were exploring our options for how to treat his seizures. Our choices were high dose steroids, anticonvulsants, or CBD oil (Cannabidiol). Our neurologist could not prescribe CBD oil, but he told us to check out a website called Realm of Caring and so we did. This site provides the public with current research on CBD oil as well as companies that safely manufacture a quality product.

Since CBD oil is legal to purchase (because they remove the THC) and since the side effects are so minimal when compared to the other two options, we decided to try it. We chose the Charlotte’s Web Hemp Extract and began dosing Gideon June 5th. We didn’t see a huge improvement right away. However, after about a week, we noticed that Gideon was only having his cluster of seizures every other day. So we slowly increased his dose each week. Gradually we saw fewer clusters and as of the first of July, Gideon appears to be seizure free!!

The more I research CBD, the more impressed I am with how this product appears to help with  more than just seizures. I would encourage anyone who is considering CBD to do your own research. For now, this is working for our son. Not only have we seen his seizures go away, but Gideon is actually eating more and appears to be more alert.

As for his low platelet count, we go back to the hematologist in August for a retest. For now, the doctor isn’t worried about Gideon’s platelet count of 88K. All of Gideon’s other numbers were only slightly off, but not significant enough to be concerned. Thankfully the doctor was certain that there was no cause for concern regarding any type of cancer. Praise the Lord! And who knows… maybe this CBD oil will help his platelet count?? I guess we’ll have to wait and see. I haven’t seen any research on that.

But a mother can always hope, right?

 

Family Camp

Faith & Hope, Special needs children
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Laynie & Gideon after day 1 of camp

I’ve always heard parents say that a vacation isn’t really a vacation when you have to take your kids. Families that have children with special needs understand that all too well. That’s why this summer we went back to Joni and Friends Family Camp! Five days and four nights of respite and fun… with the kids!!

We absolutely love this camp and the JAF ministry. From 9 am -3 pm every day, Kevin and I get a real break. After breakfast, the STMs (short term missionaries) take our kids for fun activities with other kids their age so that Kevin and I can participate in the adult activities. If we don’t want to do the adult activities, we can hang out in the pool or just go back to our room and sleep! I’m 36 weeks pregnant, so we spent more time napping and swimming because horseback riding and hiking might have sent me into labor!

In the evening, they have family activities that we can do with our kiddos and later in the evening they have special events, like the dance, the talent show, and the shaving cream/water balloon fight. We had so much fun this year and we truly were sad to leave. Here are some of our camp memories we’d like to share with you guys…

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When you arrive at camp, you get to meet your STMs who will be working with your kids all week. Gideon’s STMs were Caitlyn and Taylor. They are PT students at Hardin-Simmons University. Gideon loves them! And so do we!!

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At the dance, Gideon hung out by the speakers. The louder the music and bass, the better.

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They had face painting and balloons at the dance as well.

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The shaving cream fight is always a good time. On this evening of camp, they feed the parents a fancy candle light dinner and then draw back the curtains just as the kids are attacking each other outside. It’s pretty awesome to watch. (Gideon doesn’t participate in this because I’m confident he would hate it.)

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The lakeside activities are Laynie’s favorites.

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Gideon, on the other hand prefers the pool. He went almost every day of camp because his STMs are awesome!!

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Gideon didn’t ride a horse this time around because it was way too hot outside. As you can see, he still had fun.

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To say we had a blast would be an understatement. We love family camp!! The people involved here really are the hands and feet of Jesus to us weary and worn out parents.

If you have a child with a disability (or an adult child with a disability) you need to look into going to a Joni and Friends Camp near you. It’s worth every single penny! Check out their website, by clicking  HERE.  Also, they are always looking for volunteers!

Stay tuned for some special stories about camp…for now I’m off to sleep in my own bed!