Collagen

It has taken me a bit to sit down and write this update because I simply didn’t want to jinx it!

Collagen went in 2 weeks ago this Friday. My initial reaction was good, as was Bob’s and the plastic surgeon. The collagen injection went well, the overall appearance of the rods was diminished drastically and obvious cushioning was achieved. That did dissipate a lot over the last few days. The rods are quite predominate still, but overall the procedure did work. Saying that, we have to do this 3 more times, 1 a month for the next 3 months, to truly achieve the level of cushioning that Bailynn is going to require for these rods. Once we get there, the collagen should last for about 2 years.

We are still doing everything we can to keep the rods from getting too much pressure on them. We are still in a holding pattern waiting to see how this all plays out. We are still questioning, who wouldn’t be!

For now it is good news. I am trying to be happy, but my heart aches when I look at her back. My iPad is filled with photographs documenting her back over the last few weeks. Our lives are consumed by this….again.

The next collagen injection is June 20th. Please keep these in your prayers. Our insurance, as of right now, is denying these claims. I am hoping the surgeons are making a compelling plea as to why this is now required. Hopefully this doesn’t result in a fight with the insurance company. They love to be difficult.

We also travel back up to Indy next week for the neurosurgeon to look at the healing of the incision, which has healed beautifully, despite the horrific rod protrusion.

For Her.
BOBBI

It’s her birthday! The Options. 

We drove to Indy yesterday to let the surgeons get a good look at her back. The first thing they booth said was that it looked better in person than in the photographs, something I tried to relay, but it is hard when we live in a visual world. Photographs can often askew coloring and don’t give a great perspective of size. 

The rods are protruding. This is the issues. They are protruding in a region of her back that takes a lot of pressure while sitting or laying. She is skinny. This is a fact. This is fact that EVERYONE knew going into this procedure. This was why we chose this team of doctors. She is skinny, she needs rods, can you do this? The answer was yes, and then some. 

The first thing they jump to is nutrition. I can not tell you how much this enrages me. I can not express to you the deep hurt it gives me that for years and years and years and years and years, we are accused of not feeding her to the level she needs to be fed. Bull. JUST BULL! This child, throughout her 17 years, has never had an issue with eating. She may not walk, she may not talk, she may not do a lot of flipping things, but she EATS! She EATS!!!!!! She gobbled down formula, jar after jar of baby food, she inhaled pureed foods, and boost, she has at more calories in a day than what I believe most body builders eat, and still looks like a run way model minus 100 pounds. She is SKINNY, but this kids loves food. She loves to eat so fast you wonder if she is breathing in-between gulps. She gets angry with you if you try to hold her cup. She claws your arm if the food is gone and she wants more. She screams from her room if she is laying there hungry. She tells us, in her way, FEED ME!! I want to stamp my feet. Punch the sky. Yell at the top of my lungs! I want these doctors to hear us when we tell them how much she eats. We have provided caloric intake, we have increased caloric intake, to the absurd levels of 4000 calories a day, when her vitamin levels still came back low, despite her intake of 200% (and in some cases more) of the low vitamins a day. This is just insane. 

I have joked about creating her a youtube channel and calling it “Watch Bailynn Eat”. Every day I would video her eating every cup full. Every morsel of food logged. Every gulp accounted for. This way, every time a doctor accused us of not providing her with the nutrition she needed I could refer them to “Watch Bailynn Eat”. 

Then the bring up a feeding tube! Are you really going there?! Are you kidding me!? Bob and I’s first question is, “Does that somehow make it stick to her body differently?” Does a feeding tube have magic powers we are not aware of when it comes to intake? NOPE! BIG FAT – NOPE!!! Sorry for ranting people, but this is just the crazy stuff we have to deal with. I will note, I understand that there are families out there that profess to feed their children and don’t. There are people that lie to these doctors and have burnt them in parent doctor relationships. I get that, but for the love of GOD, our family cares for Bai like no other. She has, for every day of her 17 years, been loved, pampered, fed, cleaned, and cared for above and beyond. Please stop belittling my abilities. Please stop trying to classify us with no real knowledge of us as people or as parents. Please stop. I plead with every medical staff professional in the world, not all of us are failing. Not all of us are struggling. 

Now let me also state, if I could get her to gain weight, like 10lbs, that would not mean that 10lbs of fat would magically appear on her back. Weight/fat whatever doesn’t go where you tell it to. Heck, if we could tell our fat where to be placed, we’d have a lot happier people in the world. It’s just silly all the way around! 

Ok, deep breath, again, they knew she was SKINNY, before they placed these rods. This is not a new development. This didn’t happen last week. Now, we are dealing with it like it is a new issue. Now we are looking for solutions to problems we believed was under control. 

Here is option 1. 

Option 1 is inject collagen around the rod protrusions, on each side of her back, to try to fill in and cushion the skin. Ok. Collagen is much like a botox injection when it comes to longevity (it is obviously nothing like botox itself). Collagen is a temporary fix and would have to be done multiple times as it dissipates. This is however the least invasive option we discussed yesterday and therefor our first pick. We will do this for the first time in a week or 2 to see if it works. This will have to be done in the OR (operating room) and she will have to stay overnight in the hospital. This must work. 

AHH! I forgot! Bai has gained 5lbs since surgery!!! Ok, so that is another – she eats! moment. The straightness of her spine provides her with more comfort in eating. Take that doubter doctors! Ok, back to the options! 

Option 2.

Transplant fat. No lie, we have teased about this for years and apparently it can actually be done! SHUT THE DOOR!!! The issue with this option, is they’d have to take fat from somewhere else and put it there. Uh, she doesn’t have any fat anywhere else. ISSUE. So, this option looks fabulous, but we need fat. This also requires cutting her, exposing the rods, increasing the risk of infection, and recovery time. This option if viable if option 1 doesn’t work, but I would still like to avoid this option. 

Option 3.

An implant, much like a breast implant, but we are not putting bumbles on her back. It would be more rectangular in shape. It would have an open port area for them to deflate and inflate it at will. It would involved the same risk factors as option 2 plus the now added issues that could arise with a port. I don’t like this option in the least. This would be a do or die for me to choose. The open port alone is a no-no for me. Her skin easily breaks down. She is high risk for infection. She takes medications (when she can), that lower her immunity and healing. This is just a nope. 

So we need to put a little weight on her, yes, we agree. They need to understand that that most likely will not solve this issue. Looking into nutritional factors, with people that grow tumors in their bodies, she is always going to struggle with vitamin levels. Her body is constantly fighting inflammation, tumor growth, and her body is constantly trying to heal itself from what it does to its self. These rods however, sticking out and causing issue already, are not the fault of her diet. The placement and protrusion, would be the same on any of our girl’s backs. The difference is the way Bai holds her body, lives her life and fights. She is a challenge. She is Bailynn Drew. Did they not read the memo!? 

It is her birthday!! HAPPY 17th to the most challengingly wonderful little girl I know. How far we have gone. How far we have come. How far we have yet to go. 

For Her (on her Birthday!)

Bobbi

The Reaction

Bailynn has had some kind of pressure point irritation or allergic reaction on her back. I really believe it is due to the combination of adhesive bandaging (which she always has issue with), neosporin, and pressure on the new rods and their placement.  She now has large irritation points on her back right where the new rods protrude the most.

We noticed this weekend and  immediately removed all bandaging. Her skin looked better within a few hours of removing them, but it is in such a bad location.
We have resolved to go bandage free now with a routine of antibacterial cream.

I sent pics to her pediatrician yesterday morning, because she is the closest and typically the most helpful in these situations. She said we really needed to share the images with the indy surgeons, which we were fine with. I then paged the plastic surgeon and spoke to him yesterday afternoon. He was upset the pics didn’t come to him first. We don’t panic over this stuff. We have literally seen it all. WE wanted to verify it was worth worrying about FIRST. I hate this drive. This is all very upsetting for Bob and I. We have lived a nightmare with this back, one that we can not truly express to anyone who hasn’t been in these 4 walls. Even the girls could see the tension in us as we discovered these things on her back. We have rolled her, cleaned her, re-bandaged her, kept her on cloud fluff, watched her begin to blow raspberries again, watched her appetite come back with a vengeance. She is ravenous. Then, we watched it all feel like it was falling apart. The weight of 9 years of back surgeries. Infections. Rods slipping. Vertebrate breaking. Metal peeping out of her skin. Rods removed. Rods replaced. Infection. Rods removed. Rods…..replaced. Did we do the right thing? The pictures don’t lie, but as I sat with her this weekend furious at myself, I began to hate me. I began to regret every decision made in the last 9 years. I began to have a breakdown of dismay and sorrow. I can’t explain. I felt so betrayed. I felt so helpless. I hate helpless. That is the last freaking thing I try to be!  Sleep didn’t come this weekend. Last night was my first night to feel like sleep was uninterrupted by dreams filled with regret. Bai sat with Bob and I as we watched a show last night and she kept begging her daddy to refill her cup, which he did. I think this moment, the 3 of us alone doing something normal and routine, helped my brain rest.

I would post pictures, but I feel that some things can be very upsetting to see for a large number of people, but know that she has what looks like friction burns about midway down her back, in the middle, framing her spine. My heart has exploded with guilt over it. These things were suppose to be in the past. This was suppose to be the answer, but we never get a moment to breath. We were going to take her back to Indy today for them to look at it, but the plastic surgeon wasn’t available until tomorrow, so we point north tomorrow.

Pray for her. This can’t be the new norm. The new location of the rods can not result in placement issues for her. She can’t suffer on account of them. She simply can’t.

For Her.
Bobbi

*I HATE SCOLIOSIS, just incase you didn’t know!

4/27/17

Before – After

Bailynn had an extremely good day yesterday, and we are starting today well.

She got all of her IV ports removed over the course of the day.
I got to see scans of her back and compare them to the previous scans.
She ate better, still not full eating, but better.
She sat up again for a long period of time.
img_7229I got to wash her hair with a shower cap thingy, that really isn’t the greatest, but got most of the dried up blood out of her hair. Her hair now looks greasy. Someone needs to invent something new for this.
Her dressing was changed around 3:30pm (indy time) yesterday, by plastics. He was impressed with how well her wound is healing – she does that – and I got to really see it. It is staples from neck to butt. It is a significant amount of staples from neck to butt. I will say that despite the overwhelming size and the little strips of metal littering her skin, it looks really good. I will be anxious to see how it looks iimg_7231n 6-8 weeks when we have to return to have the staples removed in the OR.
Then she got to put on fresh clothes – with pants! This is a huge step to feeling normal again.

This morning she got one of her back drains removed. The neurosurgeon, Team Unicorn Member, warned that she would not be happy, as they had to remove a stitch, pull out a huge tube, and then restitch her skin where it was, with nothing to numb the skin. Bai didn’t even flinch. Not a twitch. Not a moan. She just tried to shield her eyes from the bright lights the doctor had turned on. One more drain to go. It has been dry the last 2 times they have came to empty it. It will come out tomorrow morning I am sure.

I asked the Unicorn Neurosurgeon yesterday, while looking at the back films, if we could shoot for the weekend to go home and he said YES!!! YAY! He also said, though he knew we had told him she was quite the quick healer, but that he’d never expected her bounce back as quickly as she is. Bailynn is KING OF THE HOSPITAL (if you are Bones fan, you get it 🙂 ). Or in her case, QUEEN! She hadn’t had morphine since early Tuesday morning, until they changed the dressing yesterday. She is taking valium and lortab orally, and sometimeimg_7230s doesn’t need it till well past it time to be administered, I’ve been letting her sleep rather than waking her for doses.

She doesn’t like being moved a lot, but once rotated to a new position or sat up, she is fine.

Over all we have almost all our checklist checked to be able to go home. We’ve done this so many times, this list is ingrained in our brains. She needs to poo, she needs to not be on IV meds, she needs to be able to sit and tolerate it, she needs to eat, and she needs to not be connected to anything. All we have left is the back drain, then our checklist is complete! Our goal day is Saturday. I’d like to get her home and in her bed and have Bob have Sunday with us before he returns to work. She will do so much better at home, she always does. I swear she keeps her eyes pinched tightly closed here to pretend she isn’t here at all. Me too. These hospital sleeping accommodations are for the birds! Backless, boneless birds! UGH.
Pray for Saturday to be our day!

For Her.
Bobbi

UPDATE!!! DR THINKS SHE CAN GO HOME TOMORROW!!!! JAILBREAK!

The Appointment Opening

It never happens that we have a trip to Indy, to see one of Bai’s specialists, and another calls to see if we could perhaps come on that exact day too. No. It typically goes, I made Bai 2 appointments for the same day – woohoo!!! – and 2 days before said appointments, one doctor can’t see Bailynn any more. This is how it goes! So Monday, when Bai’s neurosurgeon’s office called and happened to have a magic appointment at 3 o’clock on the same day that we had ortho at 9 am – I was speechless. Luck had shimmered through a bit.

I happily excepted the appointment and proceed to tell everyone I could!  This is like hitting the lottery to me! For Real!

We loaded Rocket and head out at the crisp hour of 4am. We hit Indy and embarked on our first appointment. We knew this was going to be bad. We knew things were not going our way. We knew Bai’s back was bad. WE knew. WE KNEW. However, it is always a shock when, “your child needs surgery,” AGAIN!!! is said.
Bai’s curve – forward – has went from 61 degrees in September to 80 on Tuesday. Her body is caving in on its self. AGAIN!!!! SCREAM!! BRAIN POPS!!! SCREAM!! All in my head of course. I keep my cool or cry – crying typically cause I am so angry at all this!
I’m an angry crier – it’s the worst.

Ok, so Bai needs surgery.

When, April. How – horribly.

No really HORRIBLY!!! This time they have to go in through her side, move her diaphragm, remove a rib and make bone grafts out of it. Shim her spine with the bone grafts. Put the hardware on the inside (ok, this part I’m cool with. This makes sense for skinny minnie Bailynn!). The hardware will never poke through this way, however, this is an incredibly invasive surgery. It requires chest drainage after surgery, a vent, more nights in ICU, a longer period in germ land, oh, I mean the hospital. UGH!
Surgery………….AHHHHHHHHHHHHHHHHHHH!!!!!!!!

Next we take the girls to the children’s museum in Indy and try to let our brains soak up what was said, what has to happen, and that we are going to allow this. She needs this. This is, however awful we think, necessary.

We then head to our unicorn appointment. We met with the doctor, that 15 years ago, last Sept 20th, removed Bailynn’s brain and for years was her biggest advocate. We had slipped from seeing her in the last few years as we focused on Bai’s kidneys. We didn’t mean to lose touch, we looked for help and doctors elsewhere in this time. We searched for clinics that would look at Bailynn’s Tuberous Sclerosis. That would then treat her TS and would focus on her. We were not getting that from every clinic at Riley, but a huge majority of Bai’s specialists are still at Riley.

Her neurosurgeon just didn’t understand. Riley is a top notch facility, agreed, but. Our neurologist was not focusing on TS, just epilepsy. Our urologist and nephrologists seemed to be deaf to our pleads for assistance and help with her ongoing kidney needs. What other options did we have?!

Apparently, we now have some. Riley has a newish Neurologist, who get this! has a daughter with TS – SHUT THE DOOR! Ok, I’ll meet her. I’ll come back for that service if someone can see TS and not epilepsy. The other issue right now is nephrology. We will see.

Then we move on to the matter of Bai’s back. Her Neurosurgeon has done surgery on Bai’s back, to remove fatty lipomas and do de-tethering surgeries. It has been many many many years, but she has. We are telling her about Bai’s spine already curving, the nightmare we have went through with these super awful amazing rods. This is were the story turns. This is were our unicorn appointment seems divine in nature – completely. There is a new Neurosurgeon at Riley. He specializes in —wait for it—-THE SPINE!! and SCOLIOSIS!! WHAT!? Ok, so we meet him on February 15th at 1:30 and see if this hot shot has any ideas for our Rock Star! It was a very interesting day.

Bai’s neurosurgeon is on our team. She recommended a handful of other specialist to help with muscle issues and pain, that we will be trying to get in with soon. We will try to see this neurologist – maybe switch that back to Indy. It was such a productive appointment, that took 2 hours, Bob and I came out with a we-got-stuff-done kinda high. It was what we needed, but now the debate begins. If this other surgeon seems like a good idea, do we chance it, or do we stay safe with the guy who has known Bai for years. It is a emotional and intellectual debate. What is best for Bai?! Once we meet this guy, I’m sure we will have a better feel. For today, I try not to think about it. Bai turns 17 in May! We intend to take her and the girls to Disney this fall for much needed fun – Bai loves that place. They get to do this surgery, but Bai comes out the other end better. I said so!

That’s our week folks. Life with Bai – never dull.

I’ll be back when I know the plan or can relay more info!

Love

For Her (the Rock Star)
Bobbi

CUTIE ALERT! – Cute pics of the girls below at the Museum!

ReBranding

Bear with me as I go through rebranding my website to 5PinkPeonies.com. You will see the logo and look change over the next bit. I still have the domain My5Girls.com and if you put that into the web search box, you will still land here. I’m really doing it for business purposes as my business grows and grows and I simply do not want to manage 2 different websites. I have worked with some really amazing organization, business, individuals, and brides this year and last. I am humbled by the outpour of kindness and love for my merchandise and designs.

So, have you missed me? I have missed you. I have thought a lot about writing to all of you, so many things to tell, but not enough time to do it. This is going to feel like a short novel. We will start with last year, fall. We need to get caught up.

Our family got a much needed vacation and then returned to reality. Life. Bai has continually been in a great mood since the rods were removed last March. Though not every car ride has been fabulous lately. She tires of the car quickly, because of her back, we will return to that.

So we returned home from the beach, and dove back into our tree-tastrophe drama. It really wasn’t till December that all the repairs were done and our lives could take a deep breath from dealing with this ongoing situation. Yesterday I spent time trying to enter all of losses into our tax information. This is going to take forever, but I will do it! But of course this is us, so as one thing is resolved, another issue rears it’s head.

Our beautiful little beagle, Norbert, that we got in July, was having ongoing issues with peeing in the house. It was obvious he wasn’t trying to do it. He didn’t even squat. Urine literally falls out of him, just as he is walking! (Just so you know, we are now well known at the vet’s office.) Norbert was diagnoses with Acute Renal Disease. His renal function is actually pretty close to Baiynn’s. He also has multiple birth defects in his renal area. He has a tumor in his bladder and his bladder lacks the elasticity to expand. He is now on a few medications to help maintain his kidney function and urine acidity. Yup, you read that right, we are medicating our dog. He also wears the cutest little velcro diapers, because I simply don’t have the will power to continually clean up tinkle and babies live inside (don’t judge – I see you judging!). He has been going to dog training, at K9 University, and doing really really well. He is the sweetest little dude and honestly couldn’t have landed a better family for his situation. When faced with decisions on how to go forward with his disease, we never hesitated to do what needed to be done for him. He is our family and Bailynn loves him. So, he is in. He is one of us.
img_0056
Our little dachshund, Hamish, was cleared of his HeartWorm diagnosis that he got in August, in December, after expensive and dangerous treatments. We found that out during the tree incident. Good news for our family …….so then, 3 days before Christmas we rushed our, nearly 9 year old Jack Russell, Bridget, to the vet. She was having some issues and had to have an emergency hysterectomy. Do you see why the vet knows us? We are that family. 2016 was our year of crazy dog medical issues and trees falling. GOODBYE 2016!! Hope the door didn’t hit you in the, well you know.

So the calendar rolled, with us all sick and Christmas gone. 2017 was a chance to renew the crazy. A fresh start, why do we always think this? It is just another day with a different number, no different than the last. Our major concern, for the last few months, has been Bai’s back. The curvature is increasing at an insane pace and what are we to do?!?! No really, do you have any ideas!? We went to see her pediatrician last week to discuss some minor ongoing issues and to get some re-referrals to doctors, that I had let lapse too long. I showed her Bai’s back. At least Bob and I are not the only ones who look at it with pain and heartbreak. It is so bad. She wants us to see the orthopedic surgeon ASAP. I called and made an appointment to see him next week. We roll. We actually roll almost every 2 weeks for the next 2 months, to catch up on doctors we have not seen in years. The plan? Do I dare say I want the rods back. Do the words have the right to even come out of my mouth? Can I also say, “NEVER PUT THOSE RODS BACK IN MY BABY!” I love them. I hate them. I want them. RUN!!! This is my brain! How can she live like this?! We have done this 2 times and it has failed miserably! How can my heart ache for them to go back as bad as it does? Our hope is that he has some option, some idea to help. Hopes. Dreams. She needs something before this progresses more. She can’t live with her back caving in on her organs at this rate.

There is the update. Horrible right. Very summed up. You are welcome. Sorry. My brain hurts most days reeling over all this. I will say it is a relief to share it and a burden to pass it along. Sometimes I simply don’t update, cause I don’t know how to start and how to not bum the world out. Bai is amazing and despite her back and her relentless fight with tuberous sclerosis, yesterday was a good day, today is a good day and so will be tomorrow. That is how we move. It is good. It is well.

For Her.
Bobbi

The Rebuild

It has been over 80 days, or 11 weeks, a little over 2 months, since a tree landed on our house and yard. Everything is fixed, except our roof and siding. We have been told that we are on the schedule for the end of this week, beginning of next. Fingers crossed! It has taken insanely long to get this done!

Bob and I worked like two people have never worked before to rebuild what we had lost. What took us 2 years of building each project one at a time took a matter of weeks to rebuild. I don’t know how. We melted. For real. We would take turns coming inside to shower and change clothes to just start it all again. We worked from early in the morning till dark fell and we could barely see what we were doing. We only stopped to eat, sleep or shower. The children watched as devastation became rebirth, bumps along the way, insurance making our lives miserable, and tears, but we did it. We were able to reschedule Bailynn’s sweet 16 and celebrate, I was able to participate in my first ever craft show, we were able to continue even with a mess before us. Here are some of the images of the rebuild.

The girls even swam as we worked and trudged on in the rebuild process. This was slightly evil of them, since their parents were melting and dying, but they had a lot of fun! They are why we worked so hard!

I want to take a minute and thank everyone who came and helped us along the way. We had such an amazing team of friends and family who helped with different things when they could and we completely understood that not everyone had the time or ability. Thanks also to those who contributed in other ways, just cause you didn’t swing a hammer, didn’t mean your help didn’t go unnoticed! On a side note, we have never ran through waters as fast as we did while rebuilding. Sams Club for sure had an upsurge in water sales from us!

So it is almost over the the tree-tastrophe of 2016 will go in the history books once the siding and roof are repaired back to their former perfect state. We have a lot of tree stuff to still do, but we wanted fall to come prior to trudging into our forest area. We also have a lot of yard repair work, but again there is a time for that. The main destruction is fixed. Insurance was a beast. We have learned a lot along the way. I hope to never have anything like this happen to us again.

Bailynn:  Oh, I’m not forgetting her! She is doing really well. Those rods have been gone now for 6 months! Really! She has looked awesome, besides the curve, we will come back to that. She has been in an amazing mood all summer. She tolerated our long repair days and her sisters kept movies rolling for her. She had a fabulous birthday party with tons of guests and she did wonderfully. She has sang and ate and swam. She has been happier than I have seen her in a long time. But, the curve, we can’t win….remember. Someone said to me over the last few weeks. “You’d have no luck if it weren’t for bad luck.” No lie.  Bai’s curve has increased 15degrees since the rods were removed. So 15degrees in 6 months. This stinks. The curve is coming from an area of her spine that is compromised from 2 previous back surgeries. These surgeries occurred when she was a tiny baby and were to remove a fatty lipoma that was imbedded in her spine. Her neurosurgeon had to actually shave the bone which made that part of her spine weak. This is where the curve is. This is where her back will have to fight. This is where we watch with batted breath and pray like crazy for it to STOP!!!!!!!!!! REALLY!!! STOP!!!! For the love of pete! STOP! I am exhausted. Bob is exhausted. Dear Lord, cut our baby girl a break. Please!

So my next post won’t take a million years to make – I  promise! We have been busy, can you tell. We have been crazed. I had the opportunity to do a second craft event a few weeks ago and had a huge positive response to my work. I was excepted into Purchase With A Purpose Craft Show in Al, in November and the Castle Craft Show in December. My little business has grown leaps and bounds all during our most insane time. I’m thankful. Now back to real life – I have so much more to update, but I will save it for another day!

For Her.
Bobbi