It's been a month

It has been actually over a month since Battley went to Heaven.  Thank you all so much for all you have done for us...the meals, the texts, the calls, the visits, PRAYING for us...it all means so much and we really feel loved.  THANK YOU!

I don't have anything super profound to say.  We are still in shock and it doesn't seem real at times.  Adam and I are giving ourselves time.  Time to be sad if we want to...time to laugh...time to be grouchy...whatever.  We are going easy on us...including the boys.

You have asked if I will continue to blog...I don't know.  I have some things I do want to say.  Typing them is sometimes more than I can do right now though.  After that I just don't know.  You have asked if I will go back to work...I don't know.  We are praying that the Lord will guide us in what to do now in this very different phase.  For now I do know that we are (as a friend says) walking it out...walking out our grief daily...heck...hourly.  And as she says...if you catch me in a moment, please just hug and pat.

I have said this a lot over the past few weeks, so please forgive if you have heard it before: I used to think that people "those people" who had lost a child had some sort of enlightenment that none of the rest of "us" had.  Like they knew some magic words to say to someone who has dealt with some kind...any kind...of grief.  Well....won't be the first time, but I was wrong...WRONG!  I read the following and want to share it because it is SO TRUE!  PEOPLE...let's give ourselves a break...just saying "I am sorry" is good.  NO words will "help" and that's okay...just knowing friends are there means all it can mean at the time and that is GOOD ENOUGH!   

C

When your friend is in the depths of grief, especially when it comes to the loss of a baby or child, there is nothing that you can say that will make the situation any better. That is the truth right there. There is no "At Least" There is no "Silver Lining". There is just a bitter, cold darkness. Unless you can bring their loved one back, let go of the urge to try and come up with something profound or wise to say that is going to magically change the situation. Giving out advice is not going to help unless your friend specifically asks for it. Why? Because when you are in the depths of grief, there is no light and nothing helps. It is just the reality of grief and it is normal. So instead of trying to fix your friend, sit down with them in the dark. Let them hold onto you. While you both might be standing in the same place with a solid ground beneath you, their ground feels as though it is moving and breaking all around them. It is unstable and unpredictable. It is all that they can concentrate on.

So often people believe they have to try and make their friend feel better. They have to make them happy again. What they don't know is that the easiest option of how to help is the only one that usually makes a difference. All you have to do is sit with your friend and acknowledge that yes, this is truly awful and that you are there for them. Avoid "at least" at all costs. These two words are so incredibly damaging. When you use them you are basically telling your friend that they should not feel the way they do.

Allow your friend to speak their heart. Let them cry and be angry. Don't change the subject. Let them be the one to do that. Be honest with them, if you don’t know what to say, just tell them that. Let them know that you are there for them and that you are sorry that you do not have the words to make things better. Your honesty is appreciated.

If you can sit in the dark with your friend and just listen to them without judging them or making them feel like they should be happy because of whatever reason, then you are a wonderful friend. Just wrap your arms around them and give them a hug.

Be patient and forgiving. Your friend is in the darkest of places and unless you have been there yourself, you cannot comprehend what they are enduring. Don't wait for the old friend to come back. They are long gone. Your friend is a different person now and that is not a bad thing - it is just a different thing. They must learn how to live again and that takes time.

I hope I have made some sort of sense here. My mind is a little fuzzy since it is 2am but this is what is on my heart at the moment and I felt drawn to share this tonight.

With love,

CarlyMarie

{Website} http://carlymarieprojectheal.com/

Celebration of Battley's LIFE

Our celebration was beautiful.  The music lifted us up like you wouldn't believe.  We put this video together for the service.  It was emotionally draining to make, but good for the soul.  

C

Meals

http://www.takethemameal.com/meals.php?t=EMNC7572

Arrangements

Visitation at 1pm Thursday, July 3rd, 2014, at Grace Crossing Baptist Church

Celebration of LIFE Service following at 2pm 

598 Yandell Road, Canton, MS 39046

We will Celebrate Battley on Thursday as we have so many other Thursdays

Please wear bright colors for a Celebration

In lieu of flowers, memorials may be made to either of the following in honor of Battley Cate Terhune.  We selected each fund for different reasons that we want to share:

1) The Hayden Casavechia Palliative Care Fund at www.umc.edu/givenow

* As you know, Battley saw the Palliative Care team at Batson Hospital.  These people are so very special to us.  This is Battley's main number 1 doc.  I would like to share soon what he did for our family, but know that he went more than above and beyond.  Battley and Superman Dr B:

 This is from Hayden Casavechia's Family:

I met Hayden's mother, Lauren, at an event I spoke at a long time ago.  They wrote an article about it, but I never posted it because I did not care for the way they used my words.  Here it is just because it is an adorable pic of B and you can read more about Hayden.  http://www.ummchealth.com/news/default.aspx?id=2147508834

Hayden and his amazing parents:

 

About Palliative Care:

OR

2) The Connection

670c Hwy 51

Ridgeland, MS 39157

* This was our church for many years.  We recently visited with Battley and were reminded of the premise they started with...if one person comes and brings/tells one person and when that person does the same and so on... then there could be no limit to the Eternal Impact!

The Connection is a missional faith community that focuses on nurturing children from diverse situations and backgrounds. The Connection was begun by the United Methodist Church to "connect people with the love of Jesus" and over the past ten years has evolved into an outreach ministry primarily caring for children. All contributions are tax deductible. 

You have all been SO loving and supportive of us and we THANK YOU.  This is not easy and we are only comforted KNOWING our Battley dances with Jesus now.  We haven't been able to keep up with the calls, texts, emails, and messages.  We know we have missed a few visitors too.  Please know we read each message and appreciate the love more than words can express.  We are surely loved.

C and Adam

 

Battley Cate is with her Heavenly Father, her Great Physician, her Maker, her Savior, her JESUS

Please be in prayer for her family as we try to do a day without her in our arms

Thank you, friends
C and Adam

Part of an Update

Battley has had a few really good weeks!  She is feeling pretty good!  So much is going on that I am not sure where to start...lists work pretty well:

* she had a sleep study last night.  Her daddy took her.  I am not going to post a pic because they DREW on her FOREHEAD!  It looked like "I" a cross and "I".  I hope it washes off SOON!  They didn't discuss the results with Adam so we will wait for a call from our ENT office.  We pretty much know what the results will be though.  It was for informational purposes only so we know how to proceed with some future decisions.  Nothing drastic is about to happen though.

* therapy is going well.  We have a Big Mack button we are working with.  I will post an old video.  My phone has been full for weeks so I don't have any new pics or videos. 

* B started shaking her head NO last week.  The first day (the day of my video) she just did it all day...then she didn't do it again for a few days.  I kept asking questions and shaking my head YES and NO to help her learn the difference.  FINALLY she shook NO in therapy when she didn't want any more prunes!  She did it one other time in context since, so we are working hard on YES and NO!  How awesome would it be if she could shake YES and NO!!!!

* Battley has a spot again at school in the Fall.  We are going for an evaluation next week!  The evaluation isn't to determine if she can go, but rather to make a plan for her goals there and find the best classroom for her.

* BEST AND MOST IMPORTANT NEWS OF ALL: Battley saw the cardiologist last week.  The last time, other than once when she was sick and then we didn't even see a doc, we saw her was Nov 28, 2012 when we found out she wasn't in heart failure.  Everything was looking the same!  Hooray and Praise the Lord!

Everyone else is good.  Hopefully I will get a minute soon for more...

C

Family of 5

C

Battley is 2 Years Old!

Yep...Battley is 2!  We chose not to have a party for her this year.  Instead we got out and had our pic made by her B hay...the first pic of all 5 of us together.  Of course I haven't gotten it off the camera yet though.  Then we went to a friend's house for a last minute dinner get together and they threw her a party with balloons, cupcakes, and the cutest princess dress ever!

It's been so long since I've blogged that I forgot what has happened since last time.  We are mostly through our new GI plan of getting OFF all reflux medicines.  She is still getting one dose of Zantac at night.  In a week we will stop the Zantac all together.  Then her medicines will be:

1 half cap of Mirilax daily

1 dose of Little Tummies (over the counter senna liquid) daily

THAT'S IT!!!!

She is still doing her coconut oil.  We had to stop for a few weeks when she was so sick, but she is back to having it each day.  I see major improvements with her when she does have it.  She is more alert and interactive.

Our new plan of action is to change to a more natural diet.  It will still be a formula and pre-made for now.  The doc is trying to get us a sample case in case it doesn't work.  Our insurance situation is a NIGHTMARE right now, so we don't want to fill a whole month of prescription formula and then have to pay out of pocket for what we normally get if it doesn't work.  Then if it does work well, we will transition to a blended diet.  That would be me literally cooking and blending her food myself.  A few things have to happen before this big step, but it is in the works.

She is still screaming in the night.  We now know exactly what it is and are working hard to get the combo just right so she sleeps all night.  Please pray for her and us...it's exhausting.

JM is doing very well.

H had himself a little miracle a few weeks ago.  His ACL was a partial tear.  When we went back for a check up with the surgeon after a month of PT, he released him!!!  We were shocked!  Still are!  The doc believes that this can and will heal on its own.  So for now he has a brace to wear when he wants to (he is wearing it for sports all the time right now), and he is back to doing everything he was before!

I posted a pic of Battley's new ride yesterday.  So far we have just used it in the house.  Tomorrow we are taking it to therapy to fine tune a few things with it.  It's been great though!

About her torticolis: when she was so sick a few weeks ago, she was REALLY sick.  She literally laid in our bed for days and didn't do anything at all...no playing, no rolling over, no smiling, no talking!  When she started to feel better we noticed that her neck wasn't tilting as much to one side.  It is not 100% corrected, but I truly believe that her laying so still and relaxed helped it!  Crazy, huh?

Hmmm...I think that is about it for now.

We are working on her fingers with some new braces...she will wear these at night but we are still in the testing phase right now.

and we are also working with a new communication device.  I will have to post a video later.

C

Kaity, did you see she wore her new dress for her bday?

Videos and Pics

I will work on a post tomorrow, but here are a few pics and videos from lately.

C

Broken Down

If you have seen my car on the side of the road this past week, don't worry...my car didn't break down.  Poor Battley has had such awful stomach issues this past week that I can't get anywhere without pulling over multiple times to help her.  The nights seem to be better since we started our GI plan of attack, but it seems like the nights got better and the days got worse.  I could complain here, but I have nothing to complain about because she is here.  And she feels good and is so happy when her stomach feels good!  So...what else...

Her new chair/stroller came in this week.  It's really cool.  So far we are just using it around the house since I can't push her and push JM in the other stroller.  She likes it.  I will get some pics posted this week.

Her respiratory infection is all cleared up!  This should really go at the top of this blog post because I am serious and it is for sure the most important thing I have to say.  WE HAVE SEEN ANOTHER MIRACLE.  Did making it all caps help get my point across?  I'm so serious...she literally has been healed and brought back to us again.  I have to pinch myself sometimes.  This is my verse lately:

Psalms 30...I like the whole thing, but verse 5 I have to repeat to myself a lot...

Weeping my endure for a night, BUT JOY COMES IN THE MORNING!

When I'm pulled over on the side of the road for the 5th time of the day and cannot seem to help B I have to remember that JOY is coming.  And it always does in that sweet smile of hers!  

We are back to our normal routine of going to therapy each week.  We missed 3 weeks with her being sick.  Hmmm...that's it.  Oh, well I do have an update of sorts on her torticollis but it will have to wait until next time.

C

The Plan

We saw the new GI doc yesterday.  Here is the new plan:

*add pedialyte to each feeding.  This stuff isn't cheap if you've ever bought it.  We use such a small amount and the label says to discard within 48 hours of opening it.  Doing a little research to see what we can do to make this more affordable.   I really don't like dumping it down the drain!  BUT...she has been getting a good amount of it the past 2 weeks and going to the bathroom...forget it...I've tried to be ladylike in the past...I'm tired...she's been poopooing!  We cheer for it around here!

*add Zantac to her Prilosec...one dose.  

wait 2 weeks

add another dose

wait 2 weeks

subtract the Prilosec

wait 2 weeks

subtract a dose of Zantac

wait 2 weeks

subtract the other dose of Zantac

so...she should be off all reflux meds

*somewhere in those 2 week time periods we should be getting back with the doc

*we are also probably going to change her formula again...to something more like real food.  I've looked into the idea of doing a blenderized diet for her...basically cooking raw foods and blenderizing them for her.  It's a lot of work and something I know NOTHING about.  In fact, I had to take Nutrition in college and it was awful and boring.  My brain just doesn't work that way.  BUT we will figure it out if we need to.

So...thank you all for your prayers.  It wasn't a quick fix like I was so hoping for.  God is obviously thinking I need to work on my patience lately.  

Battley's respiratory infection is all cleared up.  If you don't believe in the power of prayer, then let me just tell you that we held a lifeless body only 2 weeks ago a few times.  She is back to smiling now.  God is good and answers prayer.

She is still struggling with her stomach.  The daytime seems to be going better with the new meds we started last week...erythromicin.  The night is a whole different story.  She has been screaming in pain most all night for a long time.  It's so exhausting to try everything you know and nothing helps.  Please continue to pray for her...pray this new plan produces a resolution to her pain.  Thank you!

C

Monday Update

I have some good news, some disappointing news, and a major prayer request.  

Good news:
I made it Friday without all day help!  I had some good help, but not all day long...and it was okay. 

Battley had awful bile Thursday and Friday.  We tried a new med starting Friday night.  Erythromycin.  It helped immediately.  She was able to have her milk Saturday and Sunday with no bile, no screaming, and no bubbles!  

Because of that she got good rest and we were able to wean some oxygen settings.  She is now down at a reasonable level and I can leave the house with her if needed!

Not so good news:
The bubbles, bile, and screaming were back last night.  Because of that she didn't get good rest and her breathing isn't as good this morning.  Her sats haven't been amazing.  

Prayer request:
We are seeing a new GI doc on Wednesday.  Please pray that he will take time to fully understand what has been going on for the past year, have some answers for us, and we will see immediate results from our decisions.  

Battley is one tough girl.  It's so hard to see her in pain and not be able to help much.  Her respiratory infection seems to be much better.  She just needs more rest.  

I could NOT have done last week without help.  We had meals, help with chauffeuring H, a house cleaner, a laundry helper, a few baby rockers, a wal-mart runner, an errand runner, and daytime helpers.  

My friend Sam stayed a day, my mom stayed a day, and my Aunt stayed 2 days!!!  

Then on top of all that, you guys are praying for us.  Thank you!  We are so blessed and humbled by your love for us. 

C

Thursday Night Update

Battley rested very well today.  I wasn't able to wean any oxygen settings, but we didn't have to make any increases either.  She is having major stomach issues.  Every few hours she will scream and have bile that needs to come out...yuck, but also painful for her.  I am working hard to calm her tummy so we can get back to regular feedings.  Right now she is just on Pedialyte to rest the tummy.

Hmmm...what else?  Tomorrow I will attempt to do this on my own for longer than a few minutes.  I have a few people coming to help, but there are gaps.  Hoping those gaps are peaceful.

Please continue to pray for Battley's stomach and her breathing.  Thank you!

C

Wednesday

Adam and I took Battley to see our #1 doc on Monday.  We had some tough conversation.  We did 2 things after that appt.  We started her on decadron (a steroid) for 5 days and added a humidifier to her oxygen concentrator.  By Monday night she was shaking toys...steroids are powerful!  Then we had a few setbacks and a bad night.  

Today is Wednesday....I think.  She rested well last night and was awake some this morning.  Other than a jolt of energy the steroids give her, she has been very lethargic and mostly sleeping for days.  She also hasn't been able to have much milk.  She's had plenty of pedialyte though.

Today I hope to keep her stomach feeling good.  We are using carafate and mylanta.  Also to get some milk in her.  We have been able to wean her oxygen down to a more normal setting. Maybe we can do another wean later today or tomorrow.  

She seems to be improving.  I am hopeful that that is the case at least.  

Thank you all for your prayers.

You know how people always say, "well let me know if I can do anything to help"...well I have certainly done so this week.  So beware...if you say this to me I will have a chore for you!  The help has been wonderful and given me time to pay some much needed attention to jm also.  My aunt stayed with us yesterday, and he and I even walked around the block once.  Before that I had only been outside twice in the past week to load and unload going to the doctor's office.  

Keep the wonderful healing prayers coming.  She needs rest and this stomach issue to feel better.  

C

Sunday

It's been a rough few days.  Battley has some kind of respiratory infection.  I will not go into too much detail but we have had a few moments we thought may be her last with us.  We are probably having hospice come again...kind of waiting to see how she does today.  She was stable overnight.  But only stable...not good.  She is on a lot of oxygen.  The cpap did not work but we will try another day.  Please keep praying for her.  Pray for her to get good rest, be able to cough and get junk out, for is to be able to wean her oxygen, for her stomach (she may have some gastroenteritis) and for total healing.  Thank you!

This is from a friend of a friend and so beautiful I wanted to share:

Lord,
You are mighty and strong and because of your grace and love we can overcome this world! I pray you will draw close to this family. Give them the peace that surpasses all understanding! Give them endurance to endure all things. Give them strength when there is none left. Give them help when they least expect it. Give them love from unusual places. Give them hope from heaven! Lord, please don't let them focus on this life! It is only for a moment we are here. Set their sights in your heavenly kingdom! Lord, thank you for this temporary life. Thank you that it's only for a moment, and we have no time limit with you! Thank you for owning time! How precious you are and how much love you have for your children! Today is Valentine's day... Happy Valentine's Day, Lord. You gave the best love gift of all- the cross! I praise your strong and powerful name! I love you, Jesus. Amen

H has a partially torn ACL.  The doctor is hopeful he can rehab it and may not need surgery.  He will do pt 3x a week for 4 weeks and then we will check to see if healing has taken place.  If so, more pt.  if not, surgery.  

Jm has a double ear infection and a cold.  

Our friends and family are taking such good care of us.  I will probably be calling on many more for help (only those that are illness free though, please!  We can't bear any more here). We have clean laundry; a happy baby boy who has napped and been rocked and nebulized; more food than an army needs; an out of this world dr and his nurses; and best of all wonderful prayer warriors!  And green beans with pieces of heaven (bacon i think) in them according to Adam!

C

What a day!

What a day!  Battley seems to be feeling a little bit better.  Please keep the prayers coming.  She only woke up 2 times last night...whew!  She is having trouble breathing well, so she is still on some oxygen until she is more stable on her own.

Today I am working hard to get her oxygen where it needs to be so her sats stay where they need to be.  My trusty little helper (the oxygen saturation monitor) is beeping at us often.  Our other goals are to get JM to nap more than 45 mins at a time and get H to his MRI appt.

JM has a nasty sounding cough...just a cough, but send up a little prayer for him too.  We don't want him left out.

Never a dull moment here lately.  Her oxygen concentrator stopped working late yesterday after a technician came by for a routine check.  We have tanks, but those only last a few hours and would not get us through the night.  I called the oxygen company but they were gone for the day.  BUT God had a plan a few months ago when I had "a small issue" (not really...this woman was super rude to me and hung up on me twice) with our oxygen supplier.  I had to call the owner to get it straight.  You better believe I saved her number in my cell.  SO she got another call from me last night and had someone come right over to get us fixed up!  Funny how He works!!!  I really thought about changing suppliers after that last incident but something told me to hold tight.  So I will be thankful for our little broken machine bc who knows what God has in store next. 

Anyways, my mom and a dear friend came over to save me yesterday!  So thankful for them being able to do that!  I had a little nap and felt much better.  They also gave me a head start on my mountain of laundry. 

This pic was taken last night.  She was feeling much more herself!  Yay!

And today when we finish our MRI, we get to go meet our new "niece"...she isn't my niece by blood but by almost 30 years of friendship so I claim her as mine. 

C

  

Stomach Issues

I'm typing from my phone and going to email Adam so he can post this.  Battley is again having some very serious stomach issues.  She is screaming as often as every 20 mins in pain and has not rested well in days.  She needs your prayers.  She is on oxygen this morning which is always scary for us.  H injured his left knee at soccer last week.  This is the same knee he had an ACL reconstruction on a year ago.  He has an MRI on Wednesday.  So far it appears to be something that will require surgery.  We are praying for the lesser of the 2...meniscus instead of ACL or both.  Please help us pray for him.  He is being very positive and working hard on not having muscle atrophy this time. Adam and I need your prayers too.  We are beyond tired...mentally and physically.  C

Prayers Needed

Battley still has something going on that we cannot figure out.  She seems to be okay during the day except for teething.  At night she is waking up sometimes multiple times each night screaming with gas.  Please pray with me that we find the cause of this so she can get the rest she needs at night and won't be in pain.

She also has another front tooth coming in...boo!  Most babies get a tooth in a few days.  Battley takes weeks and it is miserable for her.  I really am praying that she gets a break from teething.  She has basically been teething for a solid year!

Adam and I need some rest...really.  Every night we get our kids in bed and then starts the mad dash to get in bed and fall asleep before one wakes up.  JM will go for a good stretch before he wakes up, but about the time we get B settled is when he wakes.  We are literally getting them in bed and ignoring dirty dishes, laundry, everything except sleep...just so we get a little.

I took B to a new ENT yesterday.  He spent a lot of time with us and we made a plan.  Step one of the plan is to have a sleep study done.  Battley has...very obviously has...sleep apnea.  This is totally different than the apnea she had when she was a baby.  She has always had sleep apnea.  We knew it was something we should address some day but we had to find the right doc first.  If you want to google it, look up obstructive sleep apnea.  Many adults have this.  So...it will be about 6 weeks before we have the sleep study done.  Add this to the prayer list.  We may have some tough decisions to make in the future...or they could be easy ones.

Lastly...she isn't sick but has some major sinus junk going on.  I'm using the nebulizer on her multiple times each day and trying to keep her home if possible.  

Thank you for your prayers!

C

Update

Battley did not start school.  Thank you for your prayers.  It became very obvious to me around 2am one morning that it was not the right time.  She started having bubbles in her stomach again.  We went through this once last Spring and seemed to find the answer by switching her back to her infant formula.  She is still on that formula now so we had to come up with another solution this time.  I am hopeful that we have found the answer...Miralax!

Since B had a Nissen (surgery she had along with placement of her gtube) she is physically unable to burp or spit up...that is the point of this procedure.  So if she has a gas bubble that bothers her, we have to hook her gtube up to an empty syringe and let the bubbles out.  She was having horrible gas pains that made her scream.  When we would hook the syringe up to let the bubbles out, we would basically have to unfeed her to get them all out and then turn around and feed her again.  It was taking hours!  I couldn't imagine sending her to school and asking someone to sit and feed, unfeed, and then feed her again.  Plus, who wants to go be social when your belly hurts?

We have been about a week with only a few small issues.  We are still working out just the right combo of formula and coconut oil to have her feeling 100% again.  

On top of this, she has been teething...2 molars are on their way in and they are not being nice to her.  I've had to use Tylenol, Motrin, and Orajel.  She won't put anything in her mouth besides her finger so teething toys are out. 

We are working hard on her torticolis (tilting of her head).  I will admit that some days I feel overwhelmed by my lack of time to dedicate to working on her strength.  So while I am not blogging I am busy stretching that neck.

I also went to check out a new chair/stroller for her.  I don't see myself using it as a stroller while I have 2 babes to stroll but more as a chair for now.  It will be customized to fit her.  We should get in in a month or two.  I'm so excited about it because it will hold her upright and give me 2 hands to work on other things.  Normally to sit her up I am using both hands, arms, and some other part of my body...not easy to do other stuff like this.  The only seats we have for her now are for babies and keep her back very rounded.  So that we don't cause problems with her back, she spends a lot of time laying flat when I can't hold her...who wants to do that all day?  

I did share a little of Battley's story at church last week and how God has provided Hope at just the right times.  They did video it so I will try to post it once I have a copy.  I really appreciate all of you who prayed for me and those who came.  I would say I loved looking out and seeing all the T18 shirts, but I could not see a thing from the stage!  

Other than not getting enough rest, things are going well around here.  My main focus now is to help Battley with her neck so that she can sit by herself for longer periods of time...she can hold herself up sitting for a few seconds alone now!  Besides that I am going to have to move JM to his own crib...boo hoo.  He is outgrowing the bassinet very quickly.  So far he isn't in love with his crib.  I have been reading online accounts of how moms did this while we are having feeding sessions in the night.  If you have a bright idea, send it my way!

C