Thursday, July 2, 2015

Recap…..

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Well….the week is over and I can still move my pinky.

On my right hand.  For a few more minutes. lol

But tomorrow is a holiday and Daddy is off for 3 whole days!!!

So life is looking up!

The praise report of the day is that Marcia was able to come home today!!! She has a lot more recovering to do but at least she can do it at home now!  We are anxiously awaiting the pathology results but we are believing and hoping that it shows there are NO signs of cancer anywhere in her body!

Miss Ava had her tooth extracted today from her palate.

Another surgery sunrise to start the day off bright and early.

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Ava was trying to be really brave.  But honestly she is just done with surgeries.

The puppy jammies did help put a smile on her face though!

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But then as it got time to take her back she got quiet and anxious.  It breaks my heart every.single.time.

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They took her back and Mama headed directly for the coffee shop. I was draggin’ big time today.  Ava wet her bed last night, which she hasn’t done in AGES, so I think she was really anxious, but we both were up during the night and I was beat by 9:00.

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Thankfully all went as planned and the tooth came out easily without opening up her fistula.  They also filled 4 cavities while she was under.  The whole surgery took about 2 hours which surprised me that it took that long.

And then they took me back to see her and she was M.A.D.  She doesn’t come out of anesthesia  easily.  But thankfully the raging “only” lasted about 10 minutes.  And then I could get through to her that if she can calm down we can go home and snuggle on the couch.

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And that is where we were all afternoon…..my precious baby.

(Was thanking my boys for the wonderful new, comfy couch today!!!)

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But then after 3 hours she woke up happy and wanted to eat…..

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She only has to eat soft for about 24 hours….so not too bad. Her brothers are spoiling her with ice cream and milkshakes.  But she couldn’t suck her thumb tonight so we will see if she ends up in bed with Mommy or not later!

I’m honestly DREADING her big surgery in October.  But we are not going to dwell on it or think about it until then. 

It is time to enjoy the SUMMER.

I also heard another bit of good news this week.

We got a letter from the external review of our case concerning Josie’s rehab stay!!  They totally overturned United’s denial and ruled in our favor. Which means….that since they overturned United’s verdict Josie has now been approved for the ENTIRE 6 months of the rehab that she needs. I don’t have to keep doing re- authorizations! Praise God.

(You should read the verdict.  It made me chuckle….but basically they say it is a total no-brainer that she should have been approved for this and they made that clear in the letter and chided United for not approving it.)

I knew that our case was sent to the external review but I didn’t do ANY follow up/send any of my “reasons” to them. I figured it was a closed case after I had my fair hearing decision with the judge.  But the law says: “where the external review and the Fair Hearing decision are in conflict with one another, the decision that is most favorable to you is the one the health insurance company must abide by.”

So United MUST give us the approval per the external review decision.

Thanks be to God for fighting the battle for me.

We talk to Josie almost every day.  She really sounds happy.  Yesterday she said she had “an awesome fun day.” That made me happy.  I guess there was a puppet show and the took the kids outside to do bowling.  She is getting great PT everyday.

Speaking of PT.

That is where I’m headed 3x’s a week for 6 weeks.

Yuck.

But….right now it sounds like I won’t need surgery on my shoulder if I do this PT.  But time will tell.

I had my MRI yesterday. 

Holy Moly.  That was rough.  I’m a bit claustrophobic.  Ok, maybe more then a bit. 

But I FINISHED the test.

After I was done the guy pulled me out and asked me if I was claustrophobic.  (I hadn’t told him anything) He said he could tell I was anxious.  But he said, “You are just one  those gals who just powers through aren’t you??”

I laughed and said, “Yeah, probably but I kept my eyes shut the whole time!” There was no way I would have made it if I would have opened my eyes. And LOUD.  Wow.  I never want to do that again.

But it was good that I had it done.

It showed that there  is a grade 1 strain of the infraspinatus muscle, which is one of the rotator cuff muscles.

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(NOT my MRI….but to show what a grade 1 strain of the infraspinatus looks like.  Mine is more towards the outer edge of the infraspinatus muscle.) So if I don’t take care of this and try and get it strong then it could turn into a bigger issue down the road.

“The MRI also showed bone spurs in the glenohumeral (shoulder joint) and acromioclavicular joint, which is where the collar bone and shoulder blade meet above the shoulder joint itself which could be contributing to some inflammation of the bursa that lies between the two and also irritating some of the muscle tendons there.” (from my PT therapist)

  • The acromioclavicular joint (AC Joint) is located where the clavicle glides along the acromion, which is at the highest point of the scapula. While the clavicle and acromion do not move a lot in relation to one another, the acromioclavicular joint facilitates raising the arm up over the head.
  • The glenohumeral joint is where the head of the humerus nestles into a shallow socket of the scapula called the glenoid. This ball-and-socket construction allows for circular movement of the arm and is credited for the shoulder’s extreme flexibility.

But my PT therapist and the doctor think that with some intensive PT the shoulder will be stronger and I can avoid surgery.  But I don’t see how I will be able to get ROM back with the bone spurs.  But I will give it a solid shot and then we will re-evaluate in 6 weeks.

I can pretty much can guarantee you that I won’t be seeing the sunrise tomorrow morning! Winking smile 

Thanks honey!

And thanks to those who saw my SOS FB request for prayer today.  I felt them and appreciated the support and love so much! <3

Tuesday, June 30, 2015

Coming up for air

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My girlfriend, Vicki, sent me this towel.  I need me some sweet tea after these past couple of weeks!

This has been my mantra this week:

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I have realized that I can’t do everything….I would like to of course! But what I can do is go about my day with a servant’s heart and just love those around me.

Marcia had a foot taken out of her colon on Friday.  And she is now the proud (??) owner of an illi bag.

But let me tell you….this surgery was ROUGH.  There were many times when I wished I could take the pain and discomfort for her.

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(Doesn’t she look amazing for not having a shower in 4 days!?!?!?)

But she was very brave and really did great through it all.  I doubt I would have kept as positive attitude as she did!

She is doing better now but she had a rough go for the first 4 days.  She will hopefully be home either tomorrow night or Thursday.  Then in about 6 weeks she will start the 4 months of chemo to kick this rectal cancer to the curb.  For good!

I had a fun day with her girls on Friday while she was in surgery.  We tried to keep busy to keep our minds from worrying about their mom.

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(Thank you so much Simeon for the free passes at Adventure Sports!  That was a blast!)

We had a really fun day together and I was thankful I could spend that time with the girls.

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I wouldn’t have been able to be with Marcia like I have been this past week without the help of my boys and hubby.  They have been so awesome and have kept the home fires burning so I could go and be with Marcia and help her family.  All the days have been running together…..but I feel we are coming into a season of rest.

At least I hope so! 

I have my shoulder MRI tomorrow  to rule out any torn ligaments before I start PT to (hopefully) get the range of motion back.

And then Ava has a minor surgery on Thursday to pull a tooth that is lodged way back in her palate.  We need to do this before her “big” bone graft surgery in October. The surgeon wants it to have a good 3 months to completely heal.  But that means she probably won’t want to suck her thumb for a few days so I’m anticipating she will be snuggling in bed with Mommy. <3

BUT after those two things I think our summer can “officially” begin!

I turned in my homeschool evaluations today and Logan’s new bedroom is almost ready to paint.  But the resident painter (aka Mom) is out of commission so we will see how that goes….but I’m ready to take about a months break before we start school again!

Wednesday, June 24, 2015

Let the healing begin….

Yesterday was spent fighting insurance and advocating for Josie.

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On Monday evening I was told a  judge was going to call me for a phone hearing at noon on Tuesday and there would be a United doctor and United’s attorney on the line also.

Talk about intimidating!

So I rushed around getting letters written and faxed to the judge along with other documentation that was needed to present our case.

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Then I spent all Tuesday morning getting everything in order/my thoughts together.  And then I waited for the phone to ring.

I was ready to fight and ready to give them a piece of my mind! lol

The judge was SO very kind.  And the doctor from United actually was pretty understanding also….so the conversation went really well…..not at all like I was expecting it to!

So United has agreed to cover her rehab for 6 weeks. And then at that time we need to re-submit her goals, doctor recommendations, etc.  Typical stuff for re-authorization. And then she will get approved for another period of time. 

The judge made it quite clear to the United doctor to not give this mom a hard time when the 6 weeks rolls around….so it “should” be a pretty seamless re-authorization for Josie to continue to get the rehab she needs in order to walk again.

I really felt God brought just the right judge to hear our case and I felt like I had peace and could keep my thoughts together.

So then after I hung up I called the rehab facility and they got the ball rolling and Josie was transferred there today.

(They asked me how I won…..they have had only one other mom get a denial reversed before. I laughed and said, God and lots of fighting and knowing your rights.)

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But today was hard.  And long.

Not so much for Josie…..she actually likes it there.  It was just really hard for me as there still isn’t a bed at the facility close to us. And where she is at is about a 6 hour round trip/$20.00 in tolls kind of adventure.

But they tell me that as soon as a bed becomes available they will transfer her closer to home.

I just hope its SOON.

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Josie arrived via ambulance.  I got there about 10 minutes before she did so I was waiting for her when she arrived. I was told she slept the whole ride.

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She shares a room with another girl who has CP.  I got her settled in and then we went on a tour of the facility.

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The gym and the kitchen area.

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She even made a friend already.  Bella is really sweet and was so very welcoming to Josie.  I think they will have a blast together.  Bella is 15 and was very friendly.  That really helped me be able to leave her there and come home.

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I know that we couldn’t do the care and therapy for her here….especially with my shoulder now.  But it was still so very hard to leave her in the hands of “strangers.” But I kept telling myself that this is what this place is for….they rehabilitate!

So praying she will be well cared for and not bored….and that a bed opens up SOON closer to home so we can visit more.

As I look back on the past week I can see how God’s hand moved and I also see how he carried us through. If you would have told me she was going to be in the hospital for a week I would have freaked.  But His grace and strength got me through. We had meals brought to us on the nights when we absolutely needed them.  We had babysitters for the girls on the days that I needed help and everything did work out…..except the facility location…which I’m still scratching my head about.  But I have to trust that God will work that out too. At least she is out of the hospital and will be starting to get PT now.

We have appreciated the kind emails and messages. I feel bad I haven’t been able to respond in depth to everyone. Typing one handed gets old quickly.  But know that we have felt so loved and cared for.

A new season is upon us.

Sunday, June 21, 2015

Daddy Day 2015

This man….he works so hard for all of us.

And never complains.

So the boys wanted to do something very special for him this year.

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They wanted to get him a new couch.

Our other couch came from my Grandma….and it is a great couch but it was perfect for a 5’1”, 80 lbs little old lady.  So for my 6 foot + men in this house it just wasn’t comfortable for them to relax on.

And so the boys I have have been scouring the used furniture stores in our area and we found the perfect one last week and Travis went and picked it up on Friday and we rearranged the living room and surprised Daddy when he came home from work.

And then thankfully the boys had off work today so we could have a lovely day just being together.

We had ribs and potato salad for lunch!

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And we rested.

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These girls love their Daddy……

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And he loves them to the moon and back. <3

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Then we all headed up to see Josie.

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She was doing “ok” I guess….she just isn’t herself.  I’m pretty sure its from the medicine but it is hard to see her like this.  She just not all there. She can’t really hold a conversation.  It’s like her brain isn’t working.  She doesn’t remember much from the past few days….which may be a blessing in some ways I guess.

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I’m really hoping and praying that we can get her moved to the rehab facility tomorrow.  I sent a very strongly written letter was sent via email and I’m hopeful that we have some good news tomorrow.

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It was a nice day to just spend together as a family……

We all love Daddy so very much!

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Saturday, June 20, 2015

More questions then answers

Life is just hard and tiring right now.  There really isn’t any good way to sugar coat it…

But I was reminded that life is just full of question marks. And we don’t always get the answers that we need when we need them. So do we become fearful and angry? Or do we keep trusting Him in the midst of the trials?

I’m trying to find peace and not get angry…but man, after the crazy drama of yesterday that is a tall order!

Josie is still stuck in the hospital.  I was told that all I needed to do was get a doctor’s signature yesterday and they would process our expedited grievance request and we could move forward.

So I just “happened” to have a pre-op appointment for Ava’s dental surgery scheduled yesterday at 2:00. And our PCP graciously wrote a letter stating that Josie needs to be sent to rehab asap.  Her surgeon couldn’t get it signed before 5:00 as she was in surgery all day. And I was told that if I got it faxed to United by 5:00 we would have a decision. So I was thankful our PCP could sign it and get the ball rolling for us.

United had it by 3:30.  And at 6:30 a representative called and was so upset. United denied the rehab request last night.  The peer to peer doctor who had the “final” say was the one who denied Josie’s rehab.  The lady who called me with the decision was MAD.  I got the impression from her that everyone else at United understands the whole situation and felt like it was complete go, but ultimately this one doctor was the one who got to make the final decision.

Well….I come to find out that this “peer to peer” doctor who got to “play god”  is a gynecologist!?!?!?!? He has NO IDEA what rehab is required on a child with CP who has 2 casts on her legs.  One cast is weight bearing and the other being a total non-weight bearing cast! He doesn’t realize that she needs ROM and hamstring stretching exercises done immediately. Or that she needs to be standing on her left leg for strengthening purposes. In the denial he stated that no therapy can happen since she has two casts on so he denied it!

And the kicker was that Dr. Fortuna tried calling this doctor MANY times throughout the day yesterday trying to get ahold of him in order to do the peer to peer review.  She left MULTIPLE messages and left MULTPLE phone numbers to call her back.  She even gave him the direct OR number and told them to interrupt her surgery if United called.

(United can see these messages she left and told me that they realize that the peer to peer doctor never called Dr. Fortuna back.)

SO…..we wait till Monday morning when Angel at United will be contacting the Compliance Dept. at United as this is just wrong and we think it is against the law to make a decision without trying to do a peer to peer phone call first.

Travis helped me type and write up a very detailed letter that will be on many desks at United by Monday morning asking them to handle this internally and reverse this poor decision.

BUT I still have to file another level of grievance now with the judge and I need to file an external review…just in case United doesn’t handle this situation internally on Monday.

I don’t trust United at all.  So much for resting my arm….there be much typing involved and getting many documents together.

Dr. Fortuna called me last evening and was very concerned as Josie has been lying in bed since Wednesday.  No one has gotten her out of bed.  And then yesterday I was made aware that the nurses (it takes 2 of them to put her on the toilet chair) didn’t position her right on the toilet chair.  And she peed ALL over her knee immobilizer and possibly got urine down in her casts.

What a mess.

So she needs to get to rehab ASAP.

Steve and I just sat at the table and half laughed, half cried at the whole situation. It is ridiculous.

I was not able to make it  up to see her today as I’m feeling horrible.  This cortisone shot has messed with me.  My heart has been racing since I got it.  I haven’t slept in 2 nights now.  I have a splitting headache.  I didn’t trust driving up to see her.

But I talked to the nurse in charge of her today and it sounds like she has had a better day. She was in her wheelchair some and got to go on a “walk” around the floor with a nurse. (I’m sure Dr. Fortuna had something to do with that after seeing Josie on her rounds last evening.) But when I called back to talk to Josie she was totally out of it and didn’t sound any “perkier” to me….but the nurse says that she just got sleepy and had been talking and laughing all day.  So I hope that’s the case.

So I tried to rest my arm and supervised Travis as he made homemade potato salad for Daddy’s special day tomorrow.

And I look forward to going up tomorrow with everyone to visit Josie and see for myself how she is doing.

But Steve and Uncle Dwight kicked butt on Logan’s new wall for his new bedroom today!!!  So something happened today and at least something positive got accomplished! Smile

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So until United comes to their senses Josie will be stuck in the hospital….this was supposed to be a one night stay.  And has turned into a circus.