Family Camp

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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!

Gideon Update-Low Platelets

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After Gideon began having seizures several weeks ago, we started him on steroids with the hopes that if we treated his emerging adrenal insufficiency then we would see a decrease in his seizure activity. When that didn’t happen, we tried different doses. Then a couple of weeks ago we decided to start him on a CBD oil made by Charlotte’s Web. With that, we have seen some changes in his seizure activity. Instead of happening every day, we’ve noticed they tend to happen about every other day. Therefore, we are still working on finding the right dose of CBD oil with the hopes that will do the trick for his seizures.

Unfortunately, since the seizures began we’ve noticed more bruising on his legs. Gideon has always bruised like a peach, but not this much. Since he doesn’t walk or crawl, this excessive bruising seemed very unusual to us. At first we assumed he was just being rough with toys, but last week they looked so bad we decided to take him to the pediatrician.

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The doctor said she was concerned that the bruising was due to low platelets. She did a Complete Blood Count (CBC) test and his results came back at 135K. (I was told normal for Gideon would be around 250K). Then yesterday we went back for a follow-up and his CBC results were at 107K. Because the numbers went down again the pediatrician referred us to a hematologist at Medical City Dallas. And that is where we went this morning.

We saw Dr. Goldman in the pediatric oncology department. (We absolutely LOVE him by the way!) He looked Gideon over and drew some blood for his own testing. His CBC results came back even lower at 82K; however, the test showed that there could have been an error due to platelet clumping. He told us that he had some more tests to run and that his office would get back with us as soon as they had his results. Needless to say, we are still waiting. I’m guessing we won’t know anything until next week.

Dr. Goldman did say he was encouraged because Gideon’s other numbers looked normal, which suggested to him that Gideon might be dealing with something called Thrombocytopenia. That’s a fancy word for low platelets and that’s pretty much all we know at this point. We aren’t entirely sure what is causing Gideon to have a low platelet count yet; hopefully we’ll know more by next week.

In the mean time, we aren’t getting caught up in the “what if” game. My husband loves to call me chicken little and remind me that we’ll cross any scary bridges if and when we get there. For now our little boy is happy and mostly healthy (given his terminal diagnosis).

If Gideon can be happy in the midst of all this, then I can as well.

Rejoice in the Lord always. I will say it again: Rejoice!  Let your gentleness be evident to all. The Lord is near.  Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:4-8

An Overdue Thank You

The seasons of life can often change by the second. One moment we are in a season of bliss and the next we find ourselves under the weight of an unforeseen battle. Sometimes the trials we face can be so overwhelming that we even miss the very blessings that are right in front of us.

With all that has been going on in our lives lately, I recently decided to sit down and go through our blessings jar. It’s nothing fancy, just a place to keep record of all the good that God has brought about over the years. In doing so, two things happened. First, I was reminded of how good our God is and how much we’ve been blessed. And second, I realized that we had recently received an enormous blessing that I had not written down because it came several weeks ago when Gideon’s seizures began. So I need to send out an overdue thank you to someone, but unfortunately, I don’t know who to send it to.

I’m not sure that many people know this, but in February we signed up to go back to the Joni and Friends Family Retreat. It’s a summer respite camp for families who have children with disabilities. So in April, I received an email from Joni and Friends saying that a charge had been applied to our account and I just assumed they charged our credit card for a portion of the camp, since we had not yet paid any more than the $50 deposit. But a few weeks later I noticed another email saying the same thing, so I logged into our J&F account to see what was going on.

This is what I found…

Thank you so much

In the midst of my pity party about Gideon’s seizures, someone paid for all four of us to attend camp! All four of us!  And the most mind-blowing part is that someone did so anonymously.

This seems to be a reoccurring theme over this past school year. First, someone anonymously gives us a wheelchair accessible van and now our summer vacation (yes family respite camp is a vacation!) is paid for by someone we may or may not even know. I don’t think that these two blessings are related, but in all honesty I’ll never really know for sure.

So to the person (persons?) living out Matthew 6:3-4, here is an overdue thank you from us-

While words could never really express just how grateful we are for your gift, I’m going to give it a try. We are beyond thankful that you would put our needs….no, our wants… before yours. You could have done so much with $1600.00 and you chose to send my family and I to a summer camp. I’m in tears over this. You’ve wrecked me for today. My focus recently has been on my fears, but because of your generosity, I’m reminded (yet again) of how God has already taken care of tomorrow… right down to every last detail. So what really then do I need to fear?

Thank you for being so selfless. Thank you for being so thoughtful. Thank you for being the hands and feet of Jesus.

Thank you, thank you, thank you, a million times, thank you.

Sincerely,

The Most Excited Campers

In closing, I’d also like to say another thank you to those who have followed our journey and continued to pray for us every step of the way. We have not yet overcome the seizures, but we have found peace in the process of searching for the best route for our little man. This is just another part of our little warrior’s story as he fights his big battles.

Thank you all for your prayers, thoughts and well-wishes.

 

Gideon’s Seizures

Gideon is having seizures.

They aren’t your typical seizures that you see in movies, where the person is shaking, with eyes rolled back. Gideon’s seizures look more like myoclonic seizures.

Like this…

Not all kids with Gideon’s disorder (PBD) have seizures, although many do. We were hoping we would be the “lucky ones” who didn’t have to deal with this especially since he hasn’t had any in the first 3 years of his life. However, after an EEG last week, the neurologist confirmed that what Gideon is experiencing are in fact seizures.

I’m still learning about this part of his disorder, along with something else called adrenal insufficiency (which apparently is also affecting my son right now). So as I explain all this with my limited knowledge, please forgive me if I sound stupid (especially to those of you who are much farther along/knowledgeable in this process).

I recorded that video of Gideon’s seizures about 2 weeks ago. For a couple of months now, Gideon would have these random moments in the morning where it looked like he was “falling.”  It reminded me of the moro-reflex. I didn’t think much of it at first because it only happened one or two times when he would wake up. I thought maybe it was low blood sugar (Gideon isn’t always the best eater). However, over the past few weeks we’ve noticed these episodes have been increasing and clustering in the mornings and upon waking from his nap. So we went to see the neurologist.

This was not a fun visit. We love our neurologist. Dr. So is the one who actually was able to diagnose Gideon, when all the other specialists were scratching their heads. We didn’t know this 3 years ago, but Dr. So apparently had a patient 6 years ago that was a true Zellweger baby and so he had a hunch as to what to test for with Gideon.

Our meeting with him was depressing. He gave us all our options for treatment of seizures. Unfortunately, all the treatments seem to have a negative impact on parts of Gideon’s body that are already compromised because of the PBD. For example, there are certain anticonvulsants Gideon cannot be on because it would further compromise his liver. Or if we tried a really high dose steroid, it would speed up Gideon’s osteoporosis and further compromise his already fragile/weakened immune system.

I’m not saying we don’t have any options, we do. But the more I look into each of these medications that will save his life one way, ultimately they will compromise his life in another. Basically I feel like everything comes down to this question:

How do I want to watch my son to die?

With the help of his endocrinologist and the approval of his neurologist, we’ve made the decision to try and treat Gideon’s adrenal insufficiency first with the hopes that the seizures will stop once that part of his disease is treated. It’s worked for some PBD kids, but not for all. To treat the adrenal insufficiency, they use a low dose steroid called sol-u-cortef. He’s been on it for a few days now and so far, we’ve seen a slight improvement.

If that fails, the neurologist is open to whatever we want to do. He told us we could try a specific anticonvulsant that I cannot remember the name of and he also gave us a website to look into called Realm of Caring.

This website is pretty interesting. From my limited understanding, to get CBD oil in Texas you have to be a part of a research study and for now, the wait list for those are a mile long. However, this website apparently helps parents like us get access to medicine like this for people it’s been proven to help. I realize this is highly controversial and I’m not looking to start a debate over it. I just want to look into all the options for my son. From what I’ve read so far, this seems to have the least amount of side effects and it’s been successful for some of the kids with PBD.

Overall, this is a new season of life for us and it couldn’t have come at a worse time. With baby number 3 on the way, I really don’t want to deal with this right now. I’ve spent the past week prayerfully in tears over what to do for my son. Because no matter how we treat this (and even if we didn’t treat this), the outcome for our son is the same…

Death.

So how do we move forward from here?

Kevin and I have decided to continue researching our options and making changes as necessary for Gideon’s seizures as well as any other problems that arise.

As for our self-care, we are weary and worn, but God’s grace continues to be sufficient. We have so much love and support around us. Our family, friends and community group have been nothing less than amazing. So even though we are tired and even though this sucks, God is working even this for good.

Thanks for your continued prayers for our son and growing family.

I’ll leave you with our family’s theme song.