A Van for Ruby

Sweet Ruby. 

God took us on a wild ride when He added her to our family.  The road has been tough, but He has proven His faithfulness over and over again. 

In the beginning of this adoption journey, we prayed that God would give us feet to walk the path He had in store for us.  Little did we know what that meant! Throughout the past nine years, God has used His people to surround us and support us over and over again.  It is a hard thing to be at the receiving end of so much giving. It is humbling and vulnerable, yet we thank God for all of this support. We could not have walked this road without so many who were the very hands and feet of Jesus to us. We have been blessed by your meals, prayers, financial gifts, acts of service, respite care,  encouragement, listening ears... the list could go on.  

I wish I could report that we didn't need your help anymore, but that is not the case. Ruby has many needs, especially financial ones. She is an expensive little girl! We set aside thousands of dollars each month for her respite care, equipment, diapers and therapy. We would love to be able to do life with Ruby on our own, but we have learned that this is not possible.  Instead of fighting help and being stubbornly independent (which I have done before) I have tried to be honest and open about the struggles of life and then graciously accept help when it is offered. 

This support from all of you is vital for us! 

As they say, "It takes a village". We have found this to be very true.

Again, we find ourselves in a place of need. 

Our family desires a reliable van for Ruby. 

For the past two years we have been driving a 1996 Ford Econoline that was given to us by a wonderful family who no longer needed it. What a gift this was to us! We are very thankful for this van, but unfortunately, it is tired and it is no longer a reliable mode of 

transportation for our family. We need to find something different, but we weren't sure what our next move would be because wheelchair vans can be very expensive! 

As a result, a family friend started a "Go Fund Me" page to help us get a more trustworthy vehicle. We are humbled to be in this position once again, but we also feel honored and blessed to be on the receiving end of your love. It is amazing that over six thousand dollars 

have already been raised!

Thank you, thank you, thank you to all of you who have made life with Ruby more beautiful by supporting us in a hundred different ways. Thank you to those of you who have given to this campaign already! From the bottom of our hearts, we appreciate all of your support.

If you are still interested in helping us get a van for Ruby, please check out the link below and feel free to share on social media as you see fit.

https://www.gofundme.com/rubys-ride

Thank you!!

Ruby Update--sleep

Thank you for all of your prayers for our family lately! It's been a long five months and I figured it was time to post an update about how Ruby is doing with sleep. Here's the scoop:

About mid-November of last year, Ruby stopped sleeping well. Now, she's never been a great sleeper, many kids with brain damage suffer from interrupted sleep patterns, but with medication we were able to manage her sleep. But for some reason, in November she started waking up screaming mad, sometimes she would be inconsolable for hours. We weren't sure what was triggering the screaming. Was she is pain? Was she hungry? Did she have a cramp or an itch? Was she getting sick? We asked ourselves all of these questions, but it's tough to get an answer when you have a non-verbal kid.

So, we started adjusting things as much as we knew how at home. We increased her meds a little, added more melatonin, used oils, adjusted the temperature in her room, played different music at night, adjusted her position more often, made sure her feet were warm...all to no avail. Then, we started talking to doctors about this problem. I pushed to get tests done to make sure there was nothing else going on that we didn't know about it. Tests often take weeks or months to schedule and get results. We first did an overnight EEG to check for seizures at night, but the test showed nothing new there. Then, we did an EGD where they sedate her slightly to put a scope down to look for stomach/esophagus issues. Nothing to cause screaming at night was found there either. Next, we started working with sleep medicine doctors who did a sleep study on Ruby. They found that she snored--seriously, that was listed in the results. So, no great answers there either.

At this point we were frustrated and exhausted. We were hoping to find something we could fix, a reason for these screams.  Unfortunately, it looks like the reason could just be that she has severe brain damage and CP and a seizure disorder. All of these can cause sleeping problems.  This conclusion didn't give me a lot of hope for solving her sleep issues.    

Thankfully, after the doctor saw she didn't have sleep apnea, he was willing to put her on some strong sleeping meds. This still was a process though as we figured out the correct mix.  It included a couple of nights where Ruby screamed/cried for 7 or 8 hours. One time she wouldn't stop so I drove her to the ER just to get sedatives. It was rough!

Now, after several weeks of messing with meds, we seem to be in a better spot. This past week she slept better than she has for the 4 months before that, so we are encouraged. Her sleep isn't perfect yet, but now we are only getting up to reposition her and settle her back down a couple of times a night, which is livable.  Her hips are dislocated because of her cerebral palsy and I do think they cause her discomfort at night. Our next hurdle is to find some solutions for her hip pain which will hopefully help her sleep better as well.

These last few months have reminded us again how thankful we are for the community of believers who surround us. In the middle of exhaustion you all have stepped in and prayed, helped with meals, had our house cleaned, wrote us notes, even spent the night a couple of times with Ruby so Mark and I could sleep. It is humbling to be on the receiving end of so much grace and love, but we are incredibly thankful and don't know how we could walk this path without all of you!