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.

Savannah Smiles Again

Savannah is doing pretty good post trache but still using vent. Right now her small leak has gone to a bigger one and if it does not improve by a week post op which should be Wednesday or Thursday she may have to go back to OR to get bigger one put in. She is smiling a lot during the day especially when anyone else comes in. When getting a bath she was rolled on her side so her back could get done and I guess it was taking too long because she rolled back onto her back. She sat in her therapy chair again yesterday for about 2 hours. She started running a fever yesterday and the cultures showed it was an infection in the picc line. So they started her on antibiotic again. Thank you for the prayers

Trache

Savannah had the trache installed around 11 am this morning. Right now she has both the trache and the vent. There is a small leak but the surgeon said that should go away once the area heals some and seals in a few days. Her face looks better without the tube down her throat. She is still alert and wanting to watch whoever comes to visit. Thank you for the prayers for the past 3 months. We know this gives us a little more time with Savannah and are grateful for any time we have. We also pray that she continues to touch some more lives and maybe bring others closer to Christ through the evidence that prayer works. The doctor told us this morning having the trache in will make it easier to try to wean her off vent. We do not know . She may need vent still all the time, may not need it , or maybe just at night.

Pray for the family as we go through trache training soon and learn how to care for it. It will be a lot of work at home to care for Savannah but we will learn what we need to.