Remembering Savannah

It has been a while since I have written anything on here. Everyone is here doing okay. This time of year is especially hard for us as this was the time of year when Savannah started going downhill really fast. It feels so weird and wrong not to have her here with us. There are times when we still do not believe that she is really gone. For those of you who were unable to come to the funeral, let me say that she looked so peaceful and beautiful. My sister fixed her hair and did so well on it. She was dressed all in purple ( her favorite color) and Hannah Montana clothes along with the frog socks her favorite teacher ever gave her. Preston and Aimee stuck a note in the casket telling her how much they loved her along with a sucker : ) We were saddened to have her gone but we also know she went through a lot especially the last 4 months of her life.

There are times when I think I could have done more although deep down I know that is not true. I often thought to myself that I could have sucked her trache out more or spent more time with her. There are times when I wonder if she really knew how much I loved her especially when I think about the times when she was healthier and I would fuss at her for doing something wrong. I know that is not the case. A thought I had the other day is that children are helpless. They expect you to take care of them and they depend completely on you.

Aimee and Preston talk about Savannah often. They will tell you she is in Heaven and that she is an angel. I am doing okay most of the time. I still tear up every time the main song that I picked for the funeral is played "With Hope" by Steven Curtis Chapman. And there are times when I really let myself think and then I get emotional. We all miss hearing her talk although we never ever thought we would say that when she was here talking our ears off. Aimee is starting to have a little Savannah come out in her. She is in Savannah;s room. All of a sudden she wants to stay up late like Savannah did, talks a lot more like Savannah, just different thing that remind you of Savannah. We swear sometimes that Savannah is whispering in her ear. There are times when you swear she is in the room with you like doors closing and her picture falling down.

Savannah Rose Darrough

Savannah passed away this morning around 8:30 am. I found her this morning around 7 am and she had been throwing up a lot and her stomach was really bloated more than I had seen in a long time. I saw that she looked real pale and blue so I called EMS. When I did her oxygen level was 52 - when EMS came the monitor was not registering so I guess she was starting to have trouble with her heart. Before we even left the yard her heart stopped. They worked on her on the way to the hospital and about 10 min at the hospital. Although we will miss her a lot, we know she is better off. We know that she is walking, talking, and playing like she has not been able to do for a long time. We know she is happy and in no pain. I believe that she held on a little longer to come home and spend time with Preston and Aimee and the rest of her family. She did get to do that for 20 days and I know she enjoyed that. She interacted with them and talked some to us. It was a blessing to have her the extra time. There were several times when we thought she would pass during her hospital stay but she fought and held on. Thank you everyone for the prayers and please continue to pray for peace and acceptance for our family and friends. We come out of this knowing how many lives Savannah touched and that she loved many. She drew many people in to love her as well. She had a lot of strength and fight for a 9 year old girl.

Savannah is Home

Most of you already know this but Savannah came home on Friday. She is doing okay with no problems. She is actually talking more. She is reading out loud again with a little help with turning pages and sometimes holding book depending on the size. I believe she is enjoying being home hearing and seeing Preston and Aimee. We are still waiting to hear on private nursing so right now it is mainly mommy doing the care. Thanks to everyone for the prayers and support the past 3 1/2 moths. Her teacher and I talked today about how much of a fighter she is and that she surprised everyone. In fact today when her teacher came to visit she was being Savannah and repeating the same thing over and over asking for a game. Her teacher said she would bring one next time and Savannah said I cant wait. It was so Savannah.

Getting Ready

We are all in the process of setting up and getting ready to have Savannah brought home. We are doing the training to care for the trache and medicines and other things. Last Friday we had a lot of people from a school group and church help unpack the house. We are very thankful for that. I have done a lot of my training - still need to change the trache a couple more times. My parents still have quite a bit of training to do. We are also waiting on the equipment to come in and trying to figure out a way to have everyone in car at same time. They said the special needs car seat will be so big and wide that 3 car seats probably will not all fit in back seat and that we may have to put hers in front seat which is really not the safest option. We are guessing to go to church we will have to ride in groups or something. We have not figured that out yet.

Thank you everyone for the continued prayers. She is really enjoying herself and her visitors. She is able to color a little with the assistance of a hair bow holding the marker for her and putting her finger and thumb in between it. Other than her medical issues and her weakness she is much like her old self smiling at everyone that walks in the room. Her daddy spent a couple of times up here for long periods and I was able to go to house and work some. They really enjoyed the time together and he got her making her silly faces. It was good to see that.

More Setbacks

It seems like every time we get close to going home something else happens. She had stopped running a fever with this yeast in the bloodstream and was doing a little better. Yesterday she started running low grade fever off and on. The results of the ultrasound showed the fungus did go into balls and hide in her kidney. So now instead obeing treated for 7 days she will be treated longer. So I guess we will be at least 2 more weeks. Sometimes I wonder if we will ever go home. I am wondering if they will change at least 1 antibiotic since she is still having fever.

Revelations 3:8

When God leads you to the edge of the cliff, trust Him fully and let go. Only one of two things will happen -- either He'll catch you when you fall, or He'll teach you how to fly!
God is going to shift things around for you today and let things work in your favor. God closes doors no man can open, and He opens doors no man can close.

A Little Better

Savannah has been doing a little better this week although still has some complications. She no longer has the fever and bp is back up although she is having swelling problems from the extra fluids again and her temp was a little low today. She is still being treated for the yeast in blood. After the treatment for it they will do more cultures to see if it cleared up. While it is being treated the yeast goes into balls apparently and hides so they did an ultrasound today to look at the organs to see if it was hiding there. We have not got the results yet. She is trying her best to talk and we are going to have to learn to read lips until she can do it well. There are many things that we will have to get used to that will be hard but we will adjust as extra time is something we did not think we would have a few weeks ago. We thank God for all the answered prayers and that we will have some more time with her. We know that it is not a cure but it will give us some more needed time with her and to prepare as well. What is really hard is not having her usual motor mouth that we used to get tired of and for her not to be strong enough to hold her books or markers. Anyone that knows her knows those are 2 things she always wanted to do. Although we yearn for her to be able to do those things we are grateful with the condition she is in and able to be happy some and communicate.

She is still sitting in her therapy chair inside the wheelchair daily at least 4 hours a day watching movies and watching people. Even though she cannot talk well yet she does enjoy watching people. She went to a St Patricks Day party yesterday and could not really squeeze the playdough they gave her or color well without help but she did enjoy sitting there watching. We pray that maybe as time goes by that she will get at least strong enough to color and hold her books to read. If not that is ok too. We know that the treatment of her at home will be hard but it will be well worth it and we will continue to pray for her and be thankful to God for every day that we have with her. We are thankful for the joy she has brought to many lives.

There are some obstacles we will have to figure out. We are thinking somehow we will need a van not only for her wheelchair but because of the fact of 3 car seats trying to get squeezed in a small space in the car. There simply wont be enough room for all the kids and 2 or 3 adults. We will have to figure that one out and see if it would be something affordable for us. Another issue is the car seat they will order for herewill take 6 weeks to come in so in the meantime we will need a 5 point harness car seat without shield until that one comes in. We hate to buy one to use for 6 weeks but we may have to. If anyone knows of one that is not being used that has not been in accident that we can use until then please let us know. Thank you everyone for your prayers and assistance. Hopefully God will answer prayers again and show us a way to get all we need for her at home- it would be nice if somehow she can attend church some and go out and have a little of what she likes again back even just going to the park and watching people sitting in the sun. I think she would enjoy that as well. Thank you again for the prayers. We are confident she is here because of them and He has given her so much strength and fight for a little girl.

Savannah Protests

This week so far has been a better week for Savannah. She had her baptism and another EEG on Tuesday which showed no seizure activity which means the meds are working. She went to a trache collar that gave her oxygen and humidification. She is breathing on her own and now does not need the oxygen just the moisture. She is finally starting to talk above a whisper some and is totally being Savannah. She is protesting therapy a lot and protesting having to go to bathroom in diaper. We are so thankful for the turn around of her condition for now and to hear her talk and complain. The diagnosis has pretty much been confirmed although we are still waiting on the gene testing. Her muscle was depleted of mitochondria by 70 % and the liver by 75 %. We do not know yet the length of time she has just that she is truly a fighter and we will enjoy the time we have with her. We have begun the training for the trache. Mommy has changed the ties that hold it on twice and suctioned her several times. Nana and Papa have suctioned once each. The part Mommy dreads is the changing of the trache tube. I guess once I learn and do it a lot it will be a piece of cake. We have started talk with therapists and social worker about what equipment is needed. So far we know the trache and feeding things, bath chair, reclining wheel chair, therapy chair, and car seat. Thank you for the many prayers and assistance.