When we are away, the girls play!

The girls stayed busy with lots of playing while A and I were out of town.  I did not know or think about them having all this extra going on when we planned to both be gone but thankfully Melbie got them where they needed to be AND took pics for us!

Lizzie and Millie’s Dance Class danced at the Nursing Home in their costumes.The next day was Halloween and the Elementary School has a Costume Parade.  All the kids and teachers parade down the halls in their costumes.  Lizzie and Millie’s Princess Dresses were given to them by a sweet lady in our church who made them and gave them to them for their birthdays.  So cute!  The pics do not do them justice!  Sallie was a hippie!  Oh, and Millie prefers her hair to not be “fixed” and apparently everyone other than me grants all Millie’s wishes!  Seriously, I am not complaining! 

Doesn’t Lizzie look thrilled?!?  Parading is NOT her thing!  Well in public at least!  She does a lot of parading at home!I think it is hilarious that Millie is doing the same thing as Lizzie with the folded arms!  She too is not into parading in public!And here comes Sallie who DOES LOVE to parade!

Elleigh was busy doing other things!  Next post will be all about what she has been up to!

Away

A and I got away a couple of weeks ago for a few days which is not my excuse for being away from the blog for 2 weeks! We attended our Baptist State Convention (actually we have 2 in TX) in Corpus Christi. There were 6 of us from our church that went. We all traveled separately as couples because the other 2 couples are retired and we all went different ways after the meeting. We all attended the meetings together though and ate together, etc. So it was nice to not only get away with each other for a few days but with some of our church family as well. We had a great time! Coordinating everything with the girls while we were away was a job and there was a time before we left that I thought never again, this just isn't worth it. But, it was so worth it and and we are extremely thankful for those in our church family who know the importance of us having time together and making that happen! It is a huge blessing and was much needed! I had never been to the TX coast before. It was not FL or AL beaches but we just love the beach so it was good. Not that we spent any time relaxing on the beach but we did put our toes in the water! Driving ON the beach was really strange. It was neat to be able to drive on them but I think I prefer beaches not driven on. It was a really pretty drive also. We went through the TX hill country which you greatly appreciate when you live in an area as flat as ours. The leaves are just beautiful this year. I can't remember a fall as pretty as this one. All the colors remind me of the ones you normally only see in the mountains! Along the way this huge cross caught our eye and we checked it out. It was pretty much just a huge cross. It was definitely a Catholic thing because it was surrounded by stations of the Cross. I will post soon on what the girls were up to while we were away!

Precious Pecan Pickin' Princesses

We have several pecan trees in our yard. Last year we were fooled. The trees were full but the shells were all empty. This year the trees are loaded and the shells hold delicious pecans. We have tons on the ground and tons more to come. Thankfully Lizzie and Millie think it is really fun to pick them up (and later eat them)!

A few pics I took of their pecan pickin

Moving!

I realize this title could be very misleading!  This girl keeps us moving-physically, emotionally, spiritually, just moving! 

Leaving for Fort Worth early Monday morning for her 24th surgery.  She has gotten REALLY good at picking up on all the signs that something is up so she began suspecting something on Sunday.  We do not believe in lying to her even if it prevents some anxiety (for all of us!)  So, if she suspects and asks then we tell her yes.  We never want her to not be able to trust us so we never try to mislead her.  Now that does not mean that we do not do many things for her to not suspect something too early because it is stressful on all of us but we tell her once she asks.  In fact, her daddy hates when nurses say no ouchies today.  He has even told them before that they were lying to her!  Yes, he did!  She just has to go through so much and we want her to trust us when we tell her what is going to happen to her.  We are like that with all our girls.  We don’t sugar coat.  It is what it is and we feel life #1 we have to be honest with them and #2 it better prepares them for real life.  ALL of that to say that she knew what was going on and she handled it really well.  She is getting so much better with handling these things.  She did ask a million times if it was her ears and was good with that.  I guess she figures what can they do to my ears that they have not already done!  Gown on and ready to move to the OR.  This was right before pre-meds.  Bless her smiling face, you can see the anxiety in her eyes.  She will be really brave and then she will fall apart and then get it together again before falling apart again.  I wish I had gotten a pic of all the caretakers in their yellow attire!  We wondered why every person that came in to take care of her had a yellow covering over their scrubs.  I also wondered why on earth they were taking her temp with a regular thermometer.  Well when they took her blood pressure with a monitor that they took out of the box and then placed back in when they were finished A asked why.  Turns out that somehow her chart has been flagged as MRSA.  They have to cover themselves and throw away everything that touches her.  She has had staph many times in her ear but it has never been flagged.  So, hospital policy is that we get this special treatment for 3 years!  Dr. Bauer said he started to ask them why now but decided she would be better protected by her special treatment from catching everyone else’s germs so he let it go.  We love him!  In recovery and still very drugged but determined to sit up and to get dressed!  She immediately insists on putting her shoes on because she knows that means she gets to go home!  She is funny!  Notice her bright pink shoes.  These are actually orthopedic shoes.  I was so excited to be able to find cute ones.  Her feet are extremely flat and as she gets older and bigger it gets worse so these are the best shoes for support.  Also, notice she always has this bear and that it has a band on its ankle.  She has never really cared for stuffed animals.  When she had her cochlear implant surgery they gave her this to take to surgery and she has been to surgery with Sallie the 2 times since.  She loves this bear.  She sleeps with it sometimes at home but prior to surgery, during, and for recovery she wants this bear.  Works for us!  Only Sallie would entertain herself on the way home with a barf bag!  She thought it was so funny to do this!  Silly girl!

Everything went well.  He said the left ear had healed really well once he got everything out to be able to see.  He told us that he felt better about implanting that ear than he had before.  He got a few surprises in the right ear (implanted ear).  He was planning to clean it while she was under anesthesia. Part of the muscle flap in that ear had resorbed (which means basically it has disappeared).  This could be a major problem.  However, she has a skin layer over the electrodes.  Praise God!   The electrodes can not be exposed which would be an issue with the muscle flap resorbing.  Also, in a “normal” implanted ear with a middle ear the muscle flap not being there could cause that area to be pulled down and leave the electrodes dangling all of which would cause a trip back to surgery to try and get the electrodes back in place and/or covered.  So, he is not overly concerned at this point about what is happening.  Also, because of this happening with the muscle flap a pocket was created in the ear and we want NO pockets in her ear.  A pocket is a great place for the tumors to grow and hide.  So, he removed this pocket which created a good deal of bleeding.  She has done great.  She had some bleeding and some balance issues both of which did not last very long.  GOD IS SOOOOOOOO  GOOD!

What now?  We have a follow up in 6 weeks with him to check everything from surgery.  We have made the decision to move forward with the second implant.  We feel this will give her the best hearing possible and most importantly we feel at peace that this is the right decision.  We do not know when this will happen.  Of course insurance first has to approve and it might take longer for them to approve the second implant.  We just made the decision and called them yesterday to get everything moving.  The scheduler at Dr. Bauer’s office told me she would have their insurance specialist get the request in yesterday.  They have up to 8 weeks to respond.  Once it is approved (trusting it will be in HIS time) we can then schedule a date.  We are looking at Jan or March.  That could change but right now that is what we are thinking.  Of course there is a lot to coordinate with us and all the Dr’s so we will see.  SO, looks like more moving!  I would be lying if I said I did not dread it all because I do but I just have to keep reminding myself this is progress as hard and trying and tiring as it all is… 

What’s Happening?

I really have no idea where the last 2 weeks have gone!  It just hit me today that it has been 2 weeks since I blogged so I looked back at my pics to be reminded of what to catch up on! 

Lately Lizzie has really been into cleaning.  I had forgotten that they go through that stage where they think cleaning is fun!  Fuzzy pic but the she is mopping!  I’ll take it!Millie prefers just being silly!Soccer is going much better!  These pics are from week 2 and there were no tears, she ran and played and even kicked the ball!  She had a great time.  This past week all the games were cancelled because our band was competing.  We will be back on schedule bright and early this Saturday.  These pics are not very clear because A took them with his phone but you get the idea.She kicks!

This week has been a little better for Millie with school too.  She has cried some but not every day so that is some improvement!  Make sure to check out her class blog at www.rozellkindergarten.blogspot.com  Her teacher does an amazing job of keeping it current and posting all the highlights of their days.  I love being able to see it!  Cute story-you will see on her class blog awards that were given for the first 6 weeks and one of those is for the ones who knew their b-day.  Well Millie knows her b-day but when they tested her she got it wrong.  When I got the testing back I said, “Millie, I know you know your birthday”  She said, “yeah I do but I told her my sister’s birthday, October 25th”  She does not have a sister with a birthday on October 25th!  I think she was thinking about Lizzie’s birthday.  Whatever the case, why on earth would she do that?  Millie, Millie!  You never know!  Another Millie story which is precious!  She came home one day last week and told me that a girl on the playground said Sallie looked weird because part of her hair was one way and part another.  I am not sure exactly what she meant but I think her cochlear had it messed up which it does sometimes and apparently Millie thought that to.  Millie said, “I told her that was my sister and that was her cochlear and she could not hear without it!”  She said, “then I went and told Mrs. Rozell”  Hearing her say it was great!  She had such a passion in her voice!  To know that Millie who is so reserved at school would take up for her sister makes me smile (and cry…). 

We had Lizzie’s parent-teacher conference last week and it went great.  She is doing really well with her reading and seems to really excel in Math.  Her teacher told us over and over how well behaved she is and that is always great to hear! 

Sallie had A’s and B’s this 6 weeks and is doing great as well.  She loves math also and is doing great with her counting!  We have not had a formal meeting yet this yr and I am anxious for that to hear all that she is doing.  We talk almost daily to her special ed teacher and she keeps us informed.  Sallie is having major allergy/sinus issues and she just has not felt good at all for some time.  We have an appt with an allergist on Nov. 5th so maybe soon she can get some relief.  Tomorrow is her surgery so we appreciate your prayers.  We are still in decision mode on the second implant.  We are anxious to hear what he has to say tomorrow following surgery. 

Elleigh is in full swing with FFA, speaking contests, one act play, UIL, debate team (I think she should be great for this!), etc.  She seems to get more and more busy!  She had A’s and B’s this past 6 weeks as well.  We give her a hard time because she is a straight A student but she does not like to study so she usually gets A’s and B’s.  I will say she studied much more than normal this past 6 weeks.  She has a really tough schedule this year.  They set it up that way so that by there Junior and Senior years their schedules are not as heard and they can begin taking some college classes.  I digress from talking about her in college classes!  She picked out her heifer last week.  YES, I said heifer!  Never thought those words would come from my mouth!  Pics to come soon for sure!

I will try to not be so long between posts! 

Millie’s Soccer Debut!

Saturday was Millie’s first ever soccer game.  She has been so excited about soccer!

It was REALLY cold and windy and on top of that they played 2 games back to back.  2 hours was a little much!

HOW CUTE IS SHE???And Again!Waiting with DaddyTime for a little warming up before the gameRacing during warm-upsAnd posing of course!

Game time!This precious girl might not want to play soccer but she is definitely Millie’s biggest fan!  It is so sweet!  Sallie was sick and since it was so cold Elleigh gladly volunteered to stay home with her so I could go to the game!

So, they won one game and they lost one game.  It did not turn out to be as much fun as Millie had hoped.  She got very nervous when they started playing.  It being her first game she was not completely sure of what to do and she was really intimidated by all the kids “fighting” for the ball.  It was a little much for her and the tears came (and came and came and came!).  Hopefully once she gets used to it she will be fine and have a good time.  HOPEFULLY!  If we are going to spend our Saturday mornings playing soccer I DO want her to be having a good time!

Going Back

We went back to Dr. Bauer (ENT) last Thursday. Sallie will be going back to surgery on Oct. 22nd. Obviously this is not what we wanted to hear but at the same time we were not surprised. He will be doing clean up in the left ear which is the last ear he did surgery on. As with the right ear he will have to get all that out so that it can heal properly. He will also do some more cleaning in the right ear which is her implanted ear. The procedure will be really quick so thankfully she will not have to be sedated for too long. Afterward the issues will be the same as always when they do something to both ears which includes nausea, dizziness, and equilibrium issues. Our biggest issue is her having to continue to be put to sleep over and over but there is no alternative so as I said in the last post, we will trust Him with the details.

Also we have more decisions to make... A year ago I would have never dreamed at this time Sallie would have a cochlear implant. Well 4 months ago when she was implanted I certainly never dreamed that just 4 months later we would be making a decision on a second implant. Because she has done so well with her first implant and because there is a high likelihood that Dr. Bauer will have to do more to the left ear and the more means that if he does that then that ear could not implanted in the future. Also if you implant the second ear it needs to be done no longer than 6 to 12 months from the first implant. The brain learns to hear with that first implanted ear and it will continue to do so even after the second implant if you wait longer than that time period. So all of that to say we are back in decision mode. What are the benefits? Localizing sound better and being able to hear better in noisy environments. Developing better speech is not a proven benefit. Why would we not? The concerns and cons are the same as with the first implant and added to that is the fact that the left ear is historically worse as far as the tumors go which creates more issues. Bottom line just as before we know God has a plan and we want to be in line with that plan. We want to put all the pros and cons aside and seek Him. We appreciate your prayers as we seek His will. Honestly we are very tired from all of this and it is a little overwhelming to think of what may be ahead. We know it is progress and are thankful for that progress but realistically we are worn out! Thank you for your prayers!

Too Well?!?!

Last week we had an appointment with Sallie's cochlear audiologist (Dr. Bari). We started out with booth testing in which she responds to different sounds at different frequencies in the sound booth. I went in with her. I really can't begin to explain what that feels like. Aaron and I both have been in there with her many, many times over the past nearly 11 years and most of those times have been very disheartening. It is not a great feeling to have to put in earplugs to protect your own hearing and still be able to hear the extremely loud sounds and your child not respond. SO, I just sat there in AWE last week as she responded to a couple of sounds that neither I nor the audiologist inside the booth could hear! The audiologist outside the booth had to tell us that there was sound on a couple of higher frequencies which Sallie has never ever responded to, even when she was aided and receiving some benefit from the aids. It is amazing!!! What a journey this has been and continues to be! We have a LONG way yet to go but we are making steps which are bigger than ever before and our God has been and continues to be with us every step! HIS timing is beyond humbling for me! We are asked over and over why she was not implanted sooner which is a completely legitimate question for those who do not know all the details of her story and there are a lot of them. There are MANY reasons why but as we look back at all of them the bottom line is timing. God was in control of all the details. Had we implanted her sooner there is a high likelihood that we would have never known about the tumors that grow inside her ears and that they would have caused significant brain damage or death. I can completely say I trust HIM with the details. HE knows much better than us! Thank you Lord!

So as you can see from the graph (which is neat to compare with those in previous posts) she tested better than ever. However, as you can also see she tested better than she should. What? I NEVER thought I would hear the words "Sallie is hearing better than she should!" Looking at the graph you will see her responses marked with the letter R. She responded to some of the sounds at below 20 db. You will see that she has marked normal ci which is cochlear implant is 20 to 30 db. The issue is that if they are responding better than 20 to 30 there is a high likelihood that there is too much power going into the device so even though she may be responding that well there could be clarity issues. I admit this mama has a hard time with that. I get it. I completely understand it. I know our goal is clarity. But it was really nice to see her respond to those quieter sounds! In the end the audiologist turned her down around 10 percent overall. We will see how she does with that. I will say we were having issues when we first turned on each day. It really upset her to the point she would hold her head and crouch down and that is much better since the turn down.

Tomorrow we see Dr. Bauer and he will decide whether or not we head back to the OR to do clean-up on the left ear which is the ear she last had surgery on. Once again, trusting HIM with the details!