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HannahCP
08-01-2012, 02:41 PM
Hi All,

I am a new member to the site. My name is Hannah and I am 27 years old. I will be going in for surgery with Dr. Lenke on September 28, 2012.

I was originally scheduled for January 30, 2013, but since I LIVE in St. Louis, it made it pretty easy to be able to accept a cancellation slot.
So I went from waiting a really long time, to waiting not so much longer. Which is a bit scary!

I had originally been referred to Dr. Lenke in June 2011, after having issues with hip bursitis (which is when I saw my orthopaedic specialist...who then told me that the root of all of my issues was my back).

In June 2011, I measured at a 79 degree kyphosis, with slight scoliosis (28 and 22). Since I had never had Xrays taken of my back, there was no way of knowing whether or not it was progressing, so I decided to wait a year and see how it went. Within the past year, my back pain has increased tremedously. I saw Dr. Lenke again in April 2012. My Xray measured at a 90 degree kyphosis this time. So, it has definitely progressed and the pain is showing that.

I have my pre-op appointment on Wednesday, August 15th, so it's really happening. I have read the book "Scoliosis Surgery the definitive Patient's reference" and I feel like it was so useful with great tips. I gave it to my mom to read as well, since she will be taking some time off of work to help me (my husband works full time).

I think one of the hardest things for me will be my pride. I am one of those people who pushes themselves to the max and knowing how helpless I'll be at first is a scary thought. I have to learn to accept help!

Does anyone have any advice on useful tools I'll need? Will I really need a raised toilet seat? I am pretty in shape, but then again, you never know. Luckily my grandma will be lending me quite a few tools "i.e. grabber, shower seat, etc."

Is your center of gravity really messed up enough to warrent a walker/cane? Just curious as to what I'll need. But I guess it's better safe than sorry.

Will a treadmill help? (Never can be too sure about weather anymore!)

Surgery: 9/28/12
Dr. Lenke
Posterior Fusion-T2-L3 with Smith-Peterson Osteotomies T7-12

JenniferG
08-01-2012, 05:54 PM
Hi All,

I am a new member to the site. My name is Hannah and I am 27 years old. I will be going in for surgery with Dr. Lenke on September 28, 2012.

I was originally scheduled for January 30, 2013, but since I LIVE in St. Louis, it made it pretty easy to be able to accept a cancellation slot.
So I went from waiting a really long time, to waiting not so much longer. Which is a bit scary!

I had originally been referred to Dr. Lenke in June 2011, after having issues with hip bursitis (which is when I saw my orthopaedic specialist...who then told me that the root of all of my issues was my back).

In June 2011, I measured at a 79 degree kyphosis, with slight scoliosis (28 and 22). Since I had never had Xrays taken of my back, there was no way of knowing whether or not it was progressing, so I decided to wait a year and see how it went. Within the past year, my back pain has increased tremedously. I saw Dr. Lenke again in April 2012. My Xray measured at a 90 degree kyphosis this time. So, it has definitely progressed and the pain is showing that.

I have my pre-op appointment on Wednesday, August 15th, so it's really happening. I have read the book "Scoliosis Surgery the definitive Patient's reference" and I feel like it was so useful with great tips. I gave it to my mom to read as well, since she will be taking some time off of work to help me (my husband works full time).

I think one of the hardest things for me will be my pride. I am one of those people who pushes themselves to the max and knowing how helpless I'll be at first is a scary thought. I have to learn to accept help!

Does anyone have any advice on useful tools I'll need? Will I really need a raised toilet seat? I am pretty in shape, but then again, you never know. Luckily my grandma will be lending me quite a few tools "i.e. grabber, shower seat, etc."

Is your center of gravity really messed up enough to warrent a walker/cane? Just curious as to what I'll need. But I guess it's better safe than sorry.

Will a treadmill help? (Never can be too sure about weather anymore!)

Surgery: 9/28/12
Dr. Lenke
Posterior Fusion-T2-L3 with Smith-Peterson Osteotomies T7-12

Hi Hannah, welcome to the forum. It's really hard to advise what you will need because we are all different. I used a walker the first day that I walked (Day 3) but that was all. I didn't have a raised toilet seat, shower seat or grabber, though I did get a grabber at about 3 months and used it for about a week. My advice is not to buy them, but do your research and know where to get them easily, if they are needed. You will have a fair idea by the time you leave hospital, if you are going to need any aids.

Initially, I would warn against a treadmill because it's a little easier to lose your balance on a treadmill than out walking. Those initial walks outside, it's good to take someone with you. Link arms and take it slowly. Enjoy the walk without worry. Later, once you're confident and walking on your own, I'm sure a treadmill would be great for bad weather.

Most of us are independent and hate to ask for help, but you will find that people will want to help and be happy to, when asked. It won't be for long, especially as you are young and will likely recover fairly quickly.

Best of luck for a great result and a smooth recovery!

walkingmom
08-01-2012, 06:04 PM
Does anyone have any advice on useful tools I'll need? Will I really need a raised toilet seat? I am pretty in shape, but then again, you never know. Luckily my grandma will be lending me quite a few tools "i.e. grabber, shower seat, etc."

Is your center of gravity really messed up enough to warrent a walker/cane? Just curious as to what I'll need. But I guess it's better safe than sorry.

Will a treadmill help? (Never can be too sure about weather anymore!)

Surgery: 9/28/12
Dr. Lenke
Posterior Fusion-T2-L3 with Smith-Peterson Osteotomies T7-12
Hi Hannah,
Welcome to the forum! Of course, everyone is different, but I found that the raised toilet seat was very helpful for months following my surgery even though I had very strong quad muscles. Your sense of balance is different plus the heavy duty medications can make you wobbly too. So you will need a walker which I had brought to the hospital to use during my pt sessions. After my hospital stay, I used the walker for about a week or so, and then sparingly used it when going out in the public more so for protection so that no one would bump me. (It's amazing how quickly I could clear an aisle in Walmart with my walker in tow!)

I was told to avoid the treadmill for at least the first few months because it would have been easy to fall off plus it is much easier to adjust your walking speed and be more sure-footed when walking on smooth surfaces like pavement. I started using a treadmill around 6 mos post op because my lower back which is not fused started aching for it was taking the brunt of the pounding from the pavement.

Your young age will definitely be an asset for you as you recover. Best of luck to you!
Donna

golfnut
08-01-2012, 08:10 PM
Welcome to the forum. September will be a good month for your surgery. My surgery was in January and the weather was terrible. I walked many boring laps in our house with my Ipad. When it wasn't too icy, my husband drove me to the Y to walk laps. I didn't use a walker too long, but actually blacked out once when I got up from the bed too quickly, so maybe I should have used it longer than I did. I had grabbers in almost every room of the house. I don't remember what I used them for so much other than laundry. Best of luck with your surgery. I have before and after pictures in my signature if you are interested. I think Dr. Lenke is amazing.

HannahCP
08-01-2012, 09:11 PM
Thanks for the advice! I am glad that my grandma will be able to lend me all of that stuff (walker, raised toilet seat, etc.), just in case I need it. Also, I am glad to know about the treadmill restriction. We were going to have to borrow one from my dad which would have #1 been a pain in the butt to try to get to our house and #2 taken up space that we don't have!! We have a Y pretty close to our house, which I would assume that I will be joining since swimming will be one of the only things I'll be able to do for a while, so that will always be an option to walk the track if need be.

It's so crazy how many questions I have even though I have heard answers and read answers several times. It's just so nerve wracking not knowing anything...How I'll heal, how long I'll be out of work, etc. It all depends.

I'm so relieved that Dr. Lenke will be my surgeon. It's nice to know that I'll be in one of the TOP surgeons hands.

Did you all initially lose a lot of weight after the surgery? Did you gain it back? I am a healthy weight, but am concerned about HOW much I would lose. I have been working out regularly in attempt to be in the best shape I can before the surgery, but haven't been skimping on the food, since I don't want to lose weight before the surgery.

Did anyone have any issues with insurance companies covering everything? BMP etc. I am very nervous that for some reason we're going to have to jump through hoops with insurance stuff, but am praying everything goes fine with that.

Hannah

hasteffen
08-01-2012, 09:15 PM
Welcome to the forum! Please keep us updated on your progress, surgery and recovery. I am scheduled for Surgery with Dr. Lenke in Oct.! My consult was in November 2011 so I will have waited 11 months for my surgery... too much planning, and I am too far away to be on the cancellation list.
Best Wishes,
Heidi

susancook
08-02-2012, 12:50 AM
Welcome! You are young and energetic and you will do well. Remember to let everyone know what you need, especially in pain meds. Linda Racine has a list of what to bring to the hospital. Unsure where it is in the blog.

Glad that you are getting this taken care of when you are young and heal so much better than when you are much older.
Susan

titaniumed
08-02-2012, 04:28 AM
Hannah,

Just wanted to welcome you to the forum.

I remember reading through my paperwork and in large bold letters it said, ďNo treadmillsĒ. Prefer outdoor walking....
Must be a fresh air thing? or they donít want any chance of a fall, which seems logical.

I didnít do any preparation, or buy anything. The insurance company will supply you with necessary things, and your husband can go get the things you will need which isnít too much really. BBQ tongs work well as a grabber.....

The walker, sock installer, and grabber were given to me at the hospital and paid for by insurance.

Here is Lindaís site
http://scoliosislinks.com/

Prep list
http://scoliosislinks.com/PreparingforSurgery.htm

Ed

Confusedmom
08-07-2012, 01:09 PM
Hannah,

I agree with what the others have said and will just add that with the fusion ending at L3 and you being 27, you may have a speedier recovery than many on here who were fused to sacrum at an older age. A daughter of a friend of mine had the same levels fused for scoliosis in late May and was doing flips in the water by late July!

Best wishes,
Evelyn

jrnyc
08-07-2012, 02:39 PM
seems many sugeons say no treadmill until a certain point in
recovery, a certain number of months...
Dr Lonner said same thing...

jess....& Sparky

gardenia
08-07-2012, 03:49 PM
Hannah,
You might have read my post yesterday that I got a call from Dr Bridwell's office. They just received a 25pg document from my insurance, United Health Care, that any surgery involving the use of BMP will make the entire surgery to be denied.

This is like the airlines, once one raises the fare then quickly others will do the same.

I asked about the cost of the BMP ($100k) and even if I wrote a check or won the lottery, the insurance will not cover the surgery/hospital etc if BMP is involved.

I read someone saying that they had the surgery with Dr Lenke but the hospital picked up the cost of BMP. But Bernie claims as she reads the document, it is now totally modified.

Please make sure during your visit next week. My surgery for October is now on hold or it will need to be re-scheduled for months until they can resolve this. They also do not want me to contact the insurance company quite yet.

Let's pray that the attorneys wrote this document and there are loopholes - it was targeted to orthopeadic doctors dealing with the spine (I beleive).

gardenia

jrnyc
08-07-2012, 03:57 PM
i hope there is a patient advocacy group
of some kind, or some legal expert, or someone else who can
help you challenge the insurance company on this unfair decision...
i wonder if they can try to get away with it based on law suits
that are due to BMP being used off label, for surgeries when
it was not intended to be used....otherwise, what can be their
excuse....?
i have heard of insurance companies balking at paying
for BMP, but never heard of them refusing the entire surgery
because of BMP being used....
i think it is a disgusting, abusive move on part of insurance
company...i hope there is some way to force them to pay...
or some solution the surgeon's office can find...

best of luck...
jess

HannahCP
08-07-2012, 03:58 PM
Thanks for the treadmill advice. I think I'll be investing in a membership to the YMCA (Which is extremely close to my house) for the track-in case of bad weather and pool-once I can use it.

Did you all initially lose a lot of weight after the surgery? Did you gain it back? I am a healthy weight, so I am not looking to lose any but just wanted an estimate on what happens post-op (I know everyone is different). I had been working out regularly in attempt to be in the best shape I could before the surgery, but it seems my back is not cooperating and I may be on the sidelines for a while. Walking more than a mile and a half at a time causes some pretty annoying pain:-/

Does anyone have SI joint pain? I have bad pain in my SI joint on my left side. I assume it's due to my hip imbalance and HOPE and PRAY it goes away after surgery. Just wanted some perspective to see if others have the same issues.

Did anyone have any issues with insurance companies covering everything? BMP etc. I am very nervous that for some reason we're going to have to jump through hoops with insurance stuff, but am praying everything goes fine with that.

How soon was it before you could start doing things alone at your house? My mom plans to help out for the first few weeks, but don't want her to overdo it with traveling back and forth, so I was just curious.

Just found out I have to have my PFT and MRI done this week before my pre-op which is next Wednesday. So I'll be spending most of Thursday and Saturday up at Barnes. Woo-hoo. Let the fun begin?

HannahCP
08-07-2012, 04:05 PM
Hannah,
You might have read my post yesterday that I got a call from Dr Bridwell's office. They just received a 25pg document from my insurance, United Health Care, that any surgery involving the use of BMP will make the entire surgery to be denied.

This is like the airlines, once one raises the fare then quickly others will do the same.

I asked about the cost of the BMP ($100k) and even if I wrote a check or won the lottery, the insurance will not cover the surgery/hospital etc if BMP is involved.

I read someone saying that they had the surgery with Dr Lenke but the hospital picked up the cost of BMP. But Bernie claims as she reads the document, it is now totally modified.

Please make sure during your visit next week. My surgery for October is now on hold or it will need to be re-scheduled for months until they can resolve this. They also do not want me to contact the insurance company quite yet.

Let's pray that the attorneys wrote this document and there are loopholes - it was targeted to orthopeadic doctors dealing with the spine (I beleive).

gardenia

I've done a lot of research through the insurance company (Blue Cross Blue Shield) and BMP is covered in "high risk" spinal fusions. Dr. Lenke's nurse said mine would be considered that, so I am hoping all goes well, but you never know. It's just that I have read so many circumstances of insurance denial that I am terrified that it will happen. They said that they would contact me if something was denied or there were issues with insurance. But I plan to inquire next week at my appointment anyway.

I hope that you get everything resolved with your insurance company. It is crazy considering what great things BMP is doing for successful bone fusion in spinal surgeries...

yacpatty
08-07-2012, 06:11 PM
Hi Newbie.....I have a question about the BMP. If your insurance won't pay for the BMP, I thought the hospital would cover the cost. Am I wrong? Just something else to worry about. Ugh!!!!
Patty

HannahCP
08-07-2012, 08:02 PM
Hi Patty,

My insurance SHOULD cover it but if not, yes they say that the hospital will pick up the cost. So it's just a matter of getting pre-authorized without any issues :) And that rarely happens!:) I hope I'm lucky.

Hannah

Confusedmom
08-07-2012, 08:16 PM
Hannah,
I have Blue Cross, and they covered everything, including BMP, at Barnes.

To answer your questions, weight: Lenke's nurse told me most patients lose 10 lbs by the first followup visit and regain it by the 6 month visit. I, however, didn't lose any weight and have gained about 8 lbs by 5 months. (Too much comfort food, I guess!)

I did have S/I joint problems pre-op, but was able to fix them with physical therapy. If you can get realigned correctly, they can hold the joint in place with an s/I belt you wear under your clothes. It made my pain vanish!

Returning to house work. I don't recommend it at all!! Lol. Seriously, I had help with laundry, heavy cleaning and grocery shopping for more than 3 months. I'm guessing it will be slightly easier for you because your fusion ends higher. But I would still line up help.

Good luck!
Evelyn

HannahCP
08-07-2012, 09:00 PM
Hannah,
I have Blue Cross, and they covered everything, including BMP, at Barnes.

To answer your questions, weight: Lenke's nurse told me most patients lose 10 lbs by the first followup visit and regain it by the 6 month visit. I, however, didn't lose any weight and have gained about 8 lbs by 5 months. (Too much comfort food, I guess!)

I did have S/I joint problems pre-op, but was able to fix them with physical therapy. If you can get realigned correctly, they can hold the joint in place with an s/I belt you wear under your clothes. It made my pain vanish!

Returning to house work. I don't recommend it at all!! Lol. Seriously, I had help with laundry, heavy cleaning and grocery shopping for more than 3 months. I'm guessing it will be slightly easier for you because your fusion ends higher. But I would still line up help.

Good luck!
Evelyn

Hi Evelyn,

Thanks for the reply! Your information about BCBS is great news!

My mom plans to spend Mon-Fri. all day with me and help out around the house (aka cleaning, laundry, meals). I am just hoping that after a few weeks I am not heavily reliant on her, so she can go back to work (she's taking her PTO time to help out).

Did you do the PT for SI Joint prior to surgery or after? That plus the pain in my thoracic spine has really been bothering me enough to keep me from much exercise in the past few days. I just keep trucking along though! I need to maintain my upper body strength and core to hopefully aid in recovery!

If you work, how long did it take for you to go back to work? I have a job where I sit at a desk for 8 hours a day, Monday-Friday. I have FMLA that will last 12 weeks, but am hoping to go back around week 9 or 10 for half days and work up to full time from there.

Thanks again for all the info!

Hannah

golfnut
08-08-2012, 06:59 AM
Hannah,
I received a letter from my ins. company denying BMP and panicked. Number 1-I wanted anything that would help me fuse and Number 2-I didn't want to pay for it myself. Kelly told me that Dr. Lenke would see to it that Barnes absorbed the cost and that was the last I heard of it. No problem.

I was a member of our Y in Waterloo (I'm just across the river from you) before surgery. Fortunately, I wasn't in much pain and could take all of the classes to get in as good of shape as possible. I read that walking very far is painful for you. Have you tried the pool? I had always avoided it because of my crooked back, but was encouraged by an instructor to start swimming to get in shape. After surgery in the winter, it provided a great place to walk with the indoor track. Dr. Lenke let me get back in the water and walk forward, backward, sideways. It doesn't sound like much, but I looked forward to something besides just walking. The warm water felt wonderful on my back. I still go to water aerobics and use the track and I'm back in a couple of the easier exercise classes and tap dance.
The pre-op tests bring the reality of it all front and center. It's frightening, but, you are that much closer to getting the surgery over with and moving on to the recovery stage. Best of luck.

king14
08-08-2012, 05:08 PM
Hey Hannah,
Just wanted to say hello. I am 29 and having my surgery the 18th of Sept... right around the corner... CRAZY stuff. :)
I will have my husband post updates for how I am doing, so if I find anything that was dire, or that wasn't too bad i'll let you know. I'm younger as well so we may not need all the bells and whistles and I have my mom taking care of me... So i'll give you a play by play right before you have yours done... Well that's my plan. We'll see what the hubby has time to post :) Good luck

HannahCP
08-08-2012, 07:12 PM
Hey Hannah,
Just wanted to say hello. I am 29 and having my surgery the 18th of Sept... right around the corner... CRAZY stuff. :)
I will have my husband post updates for how I am doing, so if I find anything that was dire, or that wasn't too bad i'll let you know. I'm younger as well so we may not need all the bells and whistles and I have my mom taking care of me... So i'll give you a play by play right before you have yours done... Well that's my plan. We'll see what the hubby has time to post :) Good luck

Hey there! Good to know that someone else is going in September as well! Who is your surgeon? Where are you located? What levels will you be fused at?

We'll definitely have to keep each other up-to-date in recovery, since we'll be going through much of the same. I think I may ask my dad to post for me, since my husband really doesn't like spending much time on the computer. So we will see!

Thanks for the message!

Hannah

Confusedmom
08-08-2012, 09:52 PM
Hannah,
I did P/T pre-op and haven't done any post-op (though I hope to start soon). I needed the s/I help after baby #2. I am a stay-at-home mom right now, so I haven't "gone back" to work. BUT I've spent the past several weeks taking care of my kids by myself. Everyone is different, but for me I felt I could handle that about 3.5 months post-op.

Best,
Evelyn

HannahCP
08-15-2012, 05:20 PM
Had my pre-op appointment today. Looks like my curve has stayed the same. It was great to have my husband come along and actually hear what was going to happen etc. Dr. Lenke is always great and makes sure to spend as much time as he needs to with the patient. No rushing!

We also met with Karen, one of Dr. Lenke's nurse who gave us a lot of information regarding my surgery. The times of the anesthesia test and central line put in etc.

My husband was very interested in the actual structural aspect as he kept asking questions about the screws and rods (typical man:-P).

I feel a lot better about everything but can't believe that I have to wait another 44 days (I'm sure it'll fly though).

I did have my height measured today and found out I'm actually 5'4 1/2". I was 5'5" and at one time years ago I was 5'6". So over the years I've lost about 1.5 inches.

http://s1257.photobucket.com/albums/ii515/hcs033185/

See the link for my x-ray photos. He plans to fuse t2-L3 with Smith-Peterson ostiotomies from T7-T12. He said that my spine is relatively flexible so I should get pretty good correction. Good news:)

That's all for now!

Hannah

king14
08-15-2012, 10:31 PM
Hey there! Good to know that someone else is going in September as well! Who is your surgeon? Where are you located? What levels will you be fused at?

We'll definitely have to keep each other up-to-date in recovery, since we'll be going through much of the same. I think I may ask my dad to post for me, since my husband really doesn't like spending much time on the computer. So we will see!

Thanks for the message!

Hannah

Hi,
I'm in southern Cali. My Dr. is Bederman. In Irvine, and i'll be fused from T4 to L1... I'm almost at one month out... ahhhh!!! Excited, nervous, and ready to get it done already!

HannahCP
09-04-2012, 09:30 PM
The day is fast approaching and is scary!!! I got my letter from BCBS for admittance into the hospital and surgery and it kind of made it REAL....we are working hard to get our kitchen installed before the 28th and hopefully it happens...hard to get my house "ready" without cabinets:-) any advice for the last few weeks before surgery?

golfnut
09-05-2012, 06:53 PM
Hannah,
I sure remember the nervousness during the weeks before the surgery when it becomes "real" as you said. My surgery was also with Dr. Lenke. I couldn't be any more pleased with my results. With a more flexible spine than mine, you will definitely get a good correction. Best of luck with a smooth recovery. We'll be anxious to hear from you when you are "on the other side."

kennedy
09-05-2012, 10:12 PM
Does anyone have any advice on useful tools I'll need? Will I really need a raised toilet seat? my surgeon uselly reccmoned a raised toilet seat. i think it depens on the surgeon.

Is your center of gravity really messed up enough to warrent a walker/cane? I used a walker because i have a gait problems
Will a treadmill help? i think it will help

gardenia
09-06-2012, 01:19 AM
I've done a lot of research through the insurance company (Blue Cross Blue Shield) and BMP is covered in "high risk" spinal fusions. Dr. Lenke's nurse said mine would be considered that, so I am hoping all goes well, but you never know. It's just that I have read so many circumstances of insurance denial that I am terrified that it will happen. They said that they would contact me if something was denied or there were issues with insurance. But I plan to inquire next week at my appointment anyway.

I hope that you get everything resolved with your insurance company. It is crazy considering what great things BMP is doing for successful bone fusion in spinal surgeries...

Hanah,
If you do not mind, send me an email at ccmail4g@gmail.com after your consultation with Dr Lenke. I am planning on sending a letter to Dr Bridwell asking for specifics. If Lenke can get away with it then maybe Bridwell can as well. Our company had BCBS in the past and then changed back to United Health Care. Anxious about your visit.

Thanks and good luck.

AngieM
09-22-2012, 10:02 PM
Hi, Hannah,

I was late to join the forum, but have wanted to tell you that we are having surgery in the same week! Mine is right around the corner - September 24! This Monday and I think yours is this Friday. We were scheduled for the same Pre-Op date of August 15, so I was looking for you without any luck. Don't know if we will meet in the hospital, but I am estimated to be there one week, so maybe.

So now I am wishing you an excellent surgery, speedy recovery, and all that you are hoping for.

All the best, Angie

JenniferG
09-23-2012, 01:31 AM
Good luck for Monday Angie. Hope you get a great correction and have a smooth recovery! Have you got someone organised to let us know how you go?

AngieM
09-23-2012, 09:34 AM
I will show my husband, Hank, how to post for me this afternoon. Will you have someone posting for you, Hannah? We will be anxious to hear how you are doing.

Thank you for your good wishes, Jennifer, they are always appreciated.

All the Best, Angie

golfnut
09-23-2012, 08:52 PM
Best of luck, Hannah and Angie, with your surgery and recovery. Post when you can.

HannahCP
09-24-2012, 10:34 PM
Hi Angie,

Sorry that missed you before your surgery! Hope it went well and we'll have to keep each other updated on our recovery. I have set up a caringbridge site for my husband or dad to post updates to while I'm not able to. I've posted a link below. My husband isn't very forum savvy so I am not sure he would update. Hopefully I'll have a good first few days like King14 and will be able to post on my own!!! We will see though!!

http://www.caringbridge.org/visit/Hannahpauk

hasteffen
09-25-2012, 06:42 AM
Hannah, I am right after you. My surgery with Dr. Lenke is Oct. 5th. The waiting is really hard. We are in great hands!
Take Care,
Heidi