Proud of It!

The Little Girls are Texans and Proud of It!

A couple of weeks ago we had these 2 precious girls over for the day and we were very proud of it!  They have grown up so much and are beyond sweet!  We love being able to see them often!

This past Thursday we went to the Audiologist for Sallie’s cochlear to be turned up and for testing.  We were able to turn up a good bit and below are her hearing results after being turned up.  To say we are proud of it is an understatement!  We have more of these pieces of paper than we can count but we slowly watched the results get worse and were always difficult for me to look at because of the reality of what she was hearing (even aided).  But this is fantastic!  The “banana
is what they refer to as the “speech banana” which means that the speech sounds are inside that “banana”.  The A’s show how she responded at each frequency.  You can see that she responded consistently at 40 db with normal hearing being 20 to 30 db so all of that to say she is not far and has only been activated 2 weeks!  We have turned up 2 times since this at home and she is responding incredibly to sound.  I can’t explain what it has been like to see God’s hand in this all.  I also can’t explain how important it has been for us to see that in such a real way.  This has been a tough year for us in many, many ways and it continues to be in many ways but we know He is working and we take the good with the not so good and we are reminded that no matter what our circumstances He is good all the time.  We also saw Dr. Bauer (ENT) and on August 13th she will have surgery again.  He will be cleaning out the implanted ear which is full of blood and infection and he will also be making an incision behind the left ear and pulling fat from that area to try and build an area inside the left ear to prevent the build up which eventually leads to the tumors.  Obviously we would prefer to not have to do this and have this set back but we do and we just have to push forward and trust God with this.  We greatly appreciate your prayers that the surgery will go smoothly and she will recover quickly.  Also, a major prayer request is that none of the electrodes are affected by him cleaning that ear out.  Any movement of the electrodes could affect the way she is currently hearing.  Also, that what he does to the left ear works in the way he is hoping. 

Ell and Mel made it safely to Kentucky for their Mission Trip and we are proud of it!  They have no cell service where they are so we have to patiently await to hear all about it when they return Saturday.  Maybe I can get Ell still enough to do her own post on her trip!

A few weeks ago Elleigh spent a couple of days in FW with her best friend Sarah who also does photography.  It was hot so they did not do a lengthy photo shoot but this is one she took and I am so proud of it!  I love it! 

Fort Hood Mission Trip

It really seems like forever since our trip to Fort Hood/Killeen.  So much has happened in our lives since then.  However, I did not want to forget this time.  It was a great time shared with our church family of all ages and it was wonderful to watch each one work in their own way. 

The May Family is our precious friends and the very first people we met when we moved to Seminary.  They were our neighbors and originally from AL!  They are Auburn Fans which we still have fun with but we love them still!  The May’s are now missionaries with Cadence International and they are the Directors of the Cadence Soldiers Hospitality House in Killeen and minister in various ways to the soldiers of Fort Hood.  They have to raise their own support so funds for improvements to the house are very limited.  So, our group went to do some of those needed projects.

We accomplished more than we went to do! This post if FULL of pics but I had a lot to share!

Group pic.  This was the morning we left to come back home and Lizzie is sporting her splint that she got the night before.  We had to make an ER visit of course!

All the kids and youth worked really hard in many ways.  Here they are helping in the kitchen following painting as you can see.The last night we were there we went on base and fed the Soldiers and their families before their Bible Study.  We prepared and served the food.Sallie “helping” AKA posing in the kitchen on baseThey “loved” their serving attire!

Quick shot of Sallie and Mrs. Elizabeth

A doing morning devotionEll painting!  Those white walls looked so much better with some color!Concrete!  These are some workin’ men!

Sall liked this spot!  There was lots going on to watch!

These are some of my favorite pics!  If you know Sallie, you know she loves to help and she is helping her Daddy here.  I love that he allows her and is patient with her (most of the time!).  All up in the action!

Elleigh and Elizabeth.  Ell was 7 yrs old when we first met the May’s.  Placing the Texas stone in the concrete.  It looked really good!Sweet Millie working hard!  Game Break!  Yes, Melbie is right in the middle!The May Family!  The twins were 9 months old when we met and the boys toddlers.  One of the things I love most about the relationships we formed in seminary are that they are lifetime relationships and we can pick up right where we left off.  It was great to be able to spend a little time catching up with our friends!

The ride.  I have very few pics of Lizzie.  She really enjoyed being with the twins!Ell is quite the cutter inner painter! 

It was really a great, busy trip and opportunity to do service missions with a part of our church family and as a family!

Indescribable

I will come back and do our Fort Hood post as well as our AL trip but I never want to forget last Thursday, June 28, 2012…  It is really INDESCRIBABLE and my words can not do it justice but I will attempt to record our thoughts/feelings. 

Wed. nt as A and I prayed together the last words he said were “Lord, help us to give you praise and realize your plan is sovereign no matter tomorrow’s outcome”  Those words really sank in as I realized what was about to be revealed to us on Thursday.  The fate of our child’s only hope for hearing at this point was about to be revealed.  Was I ready?  I am not sure either of us slept much that night.  We were excited and anxious and nervous and the list goes on.  I really do not think I have ever been through so many emotions in such a short term.  I was reminded of the first few days of Sallie’s birth and the many emotions it brought.  Would I be able to continue to give God the praise and respect His sovereignty if things did not go “our way” that day?  At 10 am we sat down beside our precious Sallie as the Audiologist tested each electron.  All 7 were working.  Then she tested them all together as we witnessed Sallie’s reaction to the sound.  She laughed, she cried, she was scared, and she was not sure what to do with herself!  I mostly cried and I could feel God’s presence in an indescribable way.  Really, I can’t begin to explain it but it was wonderful!  With all that said, this is only step 1.  There is much to be done from here and we are not sure what God will allow to happen at this point and what His plan is for her with the sound she is and will be receiving BUT I know this, whatever that is He is there and His will is sovereign and I will continue to praise Him.  Not just because that is what I am supposed to say but because He has been there and I can look back over this and there are many ups and downs but in it all it is His way and it is the best way.   He has been her protector, He has been our provider, He has been our strength, He has been our peace, He has been our comforter, He has been our decision maker, He has been our EVERYTHING and He will continue to be, no matter the outcomes!

These are some videos from Thursday.  Some of them are when they were testing the electrons and some are after the device itself was activated.  

On the last video here listen as the rep from the manufacturer tells the little girls what is being done.  Her words get me every time!  Elleigh, Lizzie, and Millie are such a major part of this too and I never want them to be forgotten.  They have a lot of responsibility in this whole picture and they do a wonderful job.  It was a really big day for them as well.  We had of course explained to them what was going to happen but for her to tell them at that moment was really great and I am so thankful it was caught on video.  I would have loved to have had a second camera on them to catch their reaction!

You can not actually see the device in these pics and I intended to take some of it on from the side today to put in this post but I failed to so I will get some soon.  We get 2 devices so that if there is an issue with 1 we have the other to put on her so that she is never without it.  Her primary device is lime green and she loves it!  YES, I did match her on purpose on activation day! 

What now?  It is set at a very low level right now, much lower than what was being tested in the videos.  The goal is for her to be able to tolerate the sound and want to hear it and very gradually move up.  We turn it up at home with a remote and then we go back to the audiologist every 2 weeks for her to re-program and move on to her next “map”.  We had our first turn up on Sat nt and then our second this morning and she tolerated both at 100 %!  We are not seeing much response at home yet because it is still so low.  We are anxious to see more response but we know it will take time and it is better to move slowly and she has to learn to process that sound.  She took it off this afternoon and I had to get pretty harsh with her to get it back on.  I think she was just really tired and was tired of it being on.  It is a magnet in her skull with a magnet on the outside and an ear full of electrons so I am sure until you get used to it, it is not easy to bear. 

THANK YOU so much for the support and prayers!  Keep them up! 

Progress!

Yesterday we had our follow-up with Dr. Bauer. He was very pleased with the swelling on the outside. It looked much better than he anticipated. There is a pool of blooding the inside of the ear that is not coming out. He wants to give it a month and if it is still there he will need to put her to sleep again to get that out in order for the area around the electrodes to heal properly. Also, he cleaned out her other ear while he had her in surgery last week. He told us then that we were going to have to address a more long-term solution for that ear because it is basically a breeding ground for the tumors. Yesterday, only 8 days later there was already stuff back in that ear. We will talk more about what options when he sees what he needs to do to the implant ear. He seemed confident he would have to take her back to the OR to get that drainage out. Obviously this would be a little set back but we are trusting God! She has felt much better yesterday and today! He said he was not surprised by her recovery being slow based on what all he did. Equilibrium still seems to be the biggest issue but we are seeing positive progress!

We left his office and headed to Audiology. Thankfully this appt was mostly for A and I so that was a relief for Sallie! We got the device and all the gadgets that come with it. We learned about each piece and more info on how it works, taking it apart, putting it together, troubleshooting, care, who to call for what, and filled out tons of paperwork. Honestly, I am quite overwhelmed by it all. We also discussed more in depth her programs and the "plan" for moving through those. I know it will soon be second nature to us but right now it makes me tired just thinking about it. We should be good to go for activation on June 28th based on how well her swelling looked. This is a major plus because our ENT felt he would have to monitor that weekly for a while. Praise God!

I was a little concerned Sallie would not be able to make the trip to AL but I think based on the last couple of days she will be good! Progress, no matter how small is a great thing. I feel like we haven't seen much lately and it gets to you. Although, I know we have and our God has been there every step. I just have not felt like myself. Just kinda going through the motions. I am hoping a change of scenery will help!

I forgot how easy 1 child is, even if that child is sick and needy! It is sure quite around here! The girls are having a blast and being SPOILED! I may never straighten them out! I am just thankful they are loved and for the time and energy our families have given to them!

Sallie leaving audiology with the goods! We have to take the briefcase to every appt. It holds all the external components! See why I am overwhelmed!

Recovering

I will do a post on our Fort Hood trip once I get all the pics together.  We had a great trip and were extremely productive!

The last night there Lizzie fell while riding a scooter and broke her arm.  So, we spent our last night there in the ER.  They put it in a splint to allow it to swell.  Sunday afternoon we headed to Fort Worth to get settled in and for Sallie to eat a good meal before Monday.  She loves Pei Wei so we had dinner there and then ran through the drive-thru at Starbucks for a mocha.  When we got back to the hotel Nanna and Grandy were there and the girls were thrilled to see them!

Sallie was a little anxious on Monday morning but she did the best she has ever done.  She got upset some but she was trying so hard to be a big girl.  She was out after taking the pre-meds.  Of course when they put her on the bed to take her to the OR she woke up enough to sign mama which nearly killed this mama!  There were SO many praying for her and us and we know that is why she did so well before surgery. 

The surgery went well.  The Dr was pleased with everything and now it is time to heal.  We were blessed with A’s parents taking care of the girls during surgery which took a huge load off us.  We had friends and church family stop by and see us and sit with us during surgery and that means the world to us.  It makes sitting through those hours so much easier.  Thank you again to those of you who comforted us during those long hours. 

In recovery, attempting to smile!  She is so precious… In her roomA big thank you to Nanna, Grandy, Uncle Adam, and Aunt Ang for Sallie’s ipad!  Not sure what she would have done without it this week!  We look forward to how it will help her once she has recovered.She battled nausea in the hospital but the meds they gave her helped.  She was very anxious about what was coming next in the hospital so late Tues morning we all decided it would be best to discharge.  We went back to the hotel because she was not able to make the trip home yet.  She has been showered with gifts!A lady in Nanna and Grandy’s church sent this bag with a gift a day for 7 days.  Such a great idea!  She has loved being able to open a gift each day.  Of course she is still getting gifts from others as well.  Thank you all who have been so sweet to bring her/send her gifts.  They all bring a smile to her face!  She continued to battle nausea and vomiting and Wed afternoon her Dr called her in some meds for that and we headed home.  She was thrilled to be headed home!More nausea and vomiting on Thursday…  We think this is an equilibrium issue.  She gets dizzy when she first stands up and doesn’t really like to move around much.

Thursday Lizzie went to get her hard cast.  Waiting in the Dr’s office.Bright pink cast!  She has done wonderful with her arm.  She had done well finding work arounds with one arm and has not complained a lot.Friday was a MUCH better day for Sallie.  She was like a different child.  Her color was better, no nausea or vomiting, more active, etc. 

Lizzie and Millie went to a b-day party at the city pool for a little girl in our church.  A took them and said Lizzie did well sitting on the side of the pool.  He did have to get her when she got a little too far in.  That is a hard thing for a 5 yr old to sit on the side of a pool!I wish I could say Sallie has done as well today as yesterday but I think she over did it.  This is where she is today.  She is wiped out and has been vomiting again.  We did not rest well last night so of course that doesn’t help. 

Nanna, Grandy, Ell, Lizzie, and Millie headed to AL this morning.  It is way too quite around here!  I miss them already! 

So, what now?  We need prayer that the nausea, vomiting, dizziness issue get better, that everything is healing properly which is crucial for the cochlear to work properly, and that her ear is draining properly.  We will see the Dr on Tues and he will check the bleeding and draining.  Pray for rest for us as this is just the beginning.  Pray that Sallie will be able to make the trip to AL.  Right now there is no way so we pray that when the time comes she will be able.  Of course we want to be able to go home but we really want her to be able to go.  It breaks my heart that she is having to stay here while the girls are having fun.  Also, pray for Lizzie to do well with her arm while she is in AL and that it heals well.  THANK YOU is just not adequate for the prayers, visits, food, texts, calls, gifts (for all of us!), and support that has been shown to our family.  We love you all!