Ruby's Home!!!

Its true! Ruby is home! We are all thrilled praising the Lord for her relatively quick hospital visit and happy return. And hoping we will not be back anytime soon! Although she occasionally throws a tantrum, she keeps us laughing and dancing more than ever before :) We are believing that the Lord will give her strength, and her legs will soon be strong enough to carry her every where she desires to go. This is Ruby during devotions as we sang the other night. 

Proof, that God is in this child.

Hospital Packing List

After 3 and a half days in the hospital Ruby is doing remarkably well! Today she was full of laughs and loves entertaining the other people we share a room with. Although the doctors won't tell us any time frame, we are thinking she could realistically leave the middle of next week, but whether the doctors agree is a different story!


Yesterday we saw the geneticist and he was able to give us a diagnosis. Although it hasn't been genetically tested, he has diagnosed and we are fairly certain she has Type I Cockayne Syndrome. Read a general summary here.


In the mean time I will tell you what I have learned about the public hospital here in Nicaragua through a generic packing list :)


1. Toilet paper. We do have a bathroom with we share with the other 3 patients and their moms, but toilet paper is not provided, so bring your own.


2. Towel, shampoo. The patients are required to be bathed every morning, but no soap or towel is provided so if you aren't prepared, you can give a water bath using the past day's clothing as a towel.


3. Sheets/blanket, pillow. The bed you are given is a plain mattress with no covering, so if you wish your child to sleep on anything other than a plastic mattress, bring your own bed dressings.


4. A Glass. Three surprisingly good looking meals are provided for  the patients, juice is also provided, but you have to bring your own glass or else you are out of luck!


5. Silverware. Along with the lack of a glass, you are also not provided any silverware. So enjoy your meal, just be prepared to eat with you your fingers.


6. Pen/writing utensil. You may be asked to keep a journal of the child's food intake, which is just fine, but remember to bring your own pen or else you will have to keep in all in your head. 


7. Diapers, wipes, clothes. The patients don't wear hospital gowns, so make sure you bring anything to keep your child clothed. 


8. Food for yourself. Someone has to be with your patient at all times, so you should bring yourself for yourself, but you aren't allowed to bring food into the hospital, so hide it well in your bag or on your body so the guard won't find it as he searches. 

Prayers for Ruby

You may or may not remember Ruby. Charity and I came across her while we were in Waspam last November. She will be 13 in two weeks and weighs 18lbs. When we were there her father was not willing to let her go with us, but not this time. Ruby arrived from Waspam with Charity and Leo Monday afternoon! We were all thrilled, and while it took the kids a little while to attach to her, and realize she wouldn’t break if you touched her, they soon fell in love with her charm as well. We have video of her laughing, but I will have to put it up later. For now, here is a new picture of us in the house Monday night. 

Anyways, fast forward about 24 hours after arrival to noon on Tuesday. Charity, Leo and I were in Managua taking Ruby to a number of doctor appointments. We had dropped Leo off so Charity drove as I held Ruby in the backseat (remember car seats are not as common here as in the States:) All of the sudden she stiffened up, locked her elbow joints and started convulsing and shaking. I remember sitting there watching (looking back it feels like ages, but I think the actual shaking only lasted maybe 15 seconds) and trying to convey what was going on to Charity. But then everything stopped. She stopped shaking and her body went limp. She wouldn’t respond, wouldn’t take control of any body parts as I tried to move them. A Charity raced through traffic, both of us praying, the only thing that kept me connected to reality was my hand laying on her heart as I constantly needed to remind myself that the heartbeat I was feeling was in fact hers, and not mind. I felt so helpless as I starred at this tiny girl with her limp body in m arms but Charity’s words rang clear, God did not let this little girl survive 13 years in Waspam without a single doctor’s attention for her to be brought here and die. And that confidence in God’s miracles is what has gotten her through so far. I write this as I sit next to her hospital bed. Its 5:32 am and I have slept maybe an hour and a half. The lack of sleep is mostly because Ruby slept all afternoon, waking up after 8 pm well rested and wide awake! So needless to say she didn’t fall back asleep until maybe 2:30 or 3 am. The best part of the night though was when her laugh came back. About 9:30pm was her first real laugh (like what you will see in the video when I get it put up). It was at that point I new she was back. At this point we were still in a room with 4 other mothers and their children, and her laugh brought them each a little ray of sunshine until we were moved into our own private room a little after 12 midnight. So despite the doctor’s grave diagnosis, she is doing great. And despite the extremeness of her case, I believe in a God who performs miracles, and I believe in a God who doesn’t make mistakes or have accidents. I believe in a God who uses all things to His own glory and this child is no exception. Please join in prayer for our muñecita (‘little doll’ as a number people endearingly have begun to refer to her) as we trust in the Lord’s ability to work a miracle.  

Teeth

I actually wrote the following yesterday, but its just getting up today. Yelka's surgery went well, and she is pretty much completely back to normal!

I'm here again sitting in Doctora Monica (the dentist's) office. About two months ago I came for the first time with Ofelia, I sat in this same chair as she was put under and had her cavities filled and teeth filed down for crowns. A couple trips later and the crowns were all put on and her smile is beautiful! Now I am here waiting on Yelka. She is having her front top four teeth extracted, cavities filled and the possibility of caps put on, yikes! She should be under for about 2 hours. Here are before and after pictures of Ofelia's teeth, and before of Yelka's (before meaning there are actually teeth on top regardless of what you see!)