'Cause I Love How It Feels When I Break The Chains

Photo courtesy of: From Inside Out Creative Studio

Sit down and buckle up! This Blog post is a long, fast ride where Bella shows you how she loves the adrenaline in her veins through her last wild ride called, "2017."  ... Did you find your holy-shit handle? It's right up there above your... !!!

Falling too fast to prepare for this
Tripping in the world could be dangerous
Everybody circling, it's vulturous
Negative, nepotist

Everybody waiting for the fall of man
Everybody praying for the end of times
Everybody hoping they could be the one
I was born to run, I was born for this

Oh 2017 what a beauty you were. You started by scaring that absolute crap out of all our pants. You muther f***** ... nice try. Yeah so, we started the year with a 7 hour bowel surgery that we hoped our 3 year old daughter would wake up from. And when she did wake up from that... they had thought a full bowel transplant was her next mountain. But thank the Lord above, that mountain turned out to be non-existent.
Whip, whip

Run me like a racehorse
Pull me like a ripcord
Break me down and build me up
I wanna be the slip, slip
Word upon your lip, lip
Letter that you rip, rip
Break me down and build me up

"She laughs without fear of the future." Proverbs 31:25

Whatever it takes
'Cause I love the adrenaline in my veins
I do whatever it takes
'Cause I love how it feels when I break the chains
Whatever it takes
You take me to the top I'm ready for
Whatever it takes
'Cause I love the adrenaline in my veins
I do what it takes

A Look Back At 2017

January - After 8 months of unsolved bowel distension, bloat, venting,pain... Bella's emergency bowel surgery (for a full bowel blockage caused by an unknown bowel disease) at ACH in Calgary, Alberta leaves her with an ileostomy pouch, bowels that are not working at all and settling in for a 3 month stay in hospital bringing her nights in hospital up to 650.

February - Bella's bowels started to show small signs of working and she was allowed to start with small sips of water. She continued TPN (IV nutrients) to give her bowels a longer rest period. (Hooked to IV lines 24/7.) - On the 16th she was able to go outside for the first time in 3 weeks. -We received a second letter from her bone marrow donor. 

March - Lyle and I started Home PN training where we learned how to administer Bella's TPN via IV lines and pump for when we were able to bring Bella home. - At this point she was only allowed 200mLs of clear fluids orally (to drink) per day. - 22nd we came HOME! - 25th was her 2nd Life Day/Transplantiversary. - Once home, Bella had to be hooked to her IV lines for 18 hours per day. 

April - Bella allowed 250mLs of half strength formula per day! - We received her donor's full contact info that revealed she is from Germany! - I conducted my first book signing event in Swift Current for the book I am a Co-Author of 'Dear Stress I'm Breaking Up With You.'

May - Bella allowed 300mLs of full strength formula per day. She's gaining weight well and weighing in at 7.9kg which is great for her size and her own growth chart. - She fought off a line infection for 12 days in hospital. 

June - Was her last need for an over-night stay in hospital! 

July - Only needing IV TPN for 2 nights per week! - 23rd was her first overnight stay away from mommy and daddy with Grandpa and Grandma! - 26th she came completely off TPN! and stayed off!

August - After 6 months of only being allowed small amounts of fluids, she has now been allowed to try soft solids! Her first form of food since January. 

September - She started Music class and Gymnastics. - 19th started two weeks of outpatient bowels/growth tests to prepare for her future Motility Study procedure set to happen March 2018.

October - Tests results showed very little to no damage on her liver from months on TPN. - Metabolic cart showed she only requires 650 calories per day for her growth rate. - Mr. Rigatoni (Her cvc Broviak line in her chest) quit working. -24th Mr.Rigatoni was taken out, Bella's 15th surgery. 

The Metabolic Cart Test is where Bella lays still for roughly 1 hour with this dome over her head measuring what calories her body uses at a resting rate.

Ready for Surgery #15: CVC Broviak Line Removal. Oct.24th 2018

November - We started training on how to administer Bella's IGG (Immune system booster) via subcutaneous IV (needles in her thighs at home). - 22nd her first day at Day Home/Daycare! - We put in her Pre-K application for September 2018.

December - 6th We celebrated her 4th Birthday! - Celebrated her 3rd Christmas at home! -Celebrated Bella's growth! (Shes growing so well that we are now able to start taking her off the specialised formula and substitute that with vitamins and supplements along side more normal food and drinks. -31st:ring in the New Year with a punny holiday card...

Bella during every Christmas she's celebrated so far. :)

Always had a fear of being typical
Looking at my body feeling miserable
Always hanging on to the visual
I wanna be invisible

Looking at my years like a martyrdom
Everybody needs to be a part of 'em
Never be enough, I'm the prodigal son
I was born to run, I was born for this

Mr. Rigatoni's Story

We said, "Good-bye" to Mr. Rigatoni in 2017, so we must tell his story before letting go of that year. Let's start with how this 7th (yes I said seventh!) CVC Broviak line, sewn into Bella's chest...got his name. Welp, it's pretty simple, he's the biggest and the best. Mr. Rigatoni was literately the largest, longest and longest lasting cvc line Bella has ever had out of all 7. (Each taking a surgery to go in and each taking a surgery to come out.) Some of her previous lines were put in or taken out alongside another surgical procedure...incase your wondering why Bella's surgery number is not 30 instead of her actual 15 times she's gone under to be cut open. However Mr.Rigatoni had his own seprate surgery to go in and to come out of Bella's chest. He went in with a life saving purpose of his own and decided to retire at just the right time, his own time. 

Mr. Rigatoni: April 15th, 2016 - October 24th, 2017.

My amazing husband surprised me with framing Mr.Rigatoni for my Christmas present. And no, this is not the weirdest thing the framing guy has framed. ha ha. 

If you can remember back to April 7th 2016, Bella had an unexpected relapse of Hemalytic Anaemia causing her HGB to drop down to 39 within hours. A healthy hgb for her is above 100.  If you can't remember here's a link to my blog post from that time: http://bellasmustardseed.blogspot.ca/2016/05/life-throws-lot-of-lemons.html

She needed multiple blood transfusions to save her life and she needed them fast...she had no cvc in her body at that time. Her previous cvc line had just came out a month prior because, well...they did not expect this episode to happen and they were transitioning her to monthly bloodwork.  Thankfully we were in Calgary at the time and they got her in quickly to put in a PICC line in her arm. PICCs had never worked with Bella...thats why she always had CVC Broviaks. Just as I predicted that fricken PICC line quit working within ONE DAY! By this point Bella had been poked peripherally over 10 times within just a few days. Her surgeon was just as upset as I was at this whole situation and decided to give her the biggest, the best, the largest line she had ever had...cue Mr. Rigatoni. He was the largest noodle, ever and he did his job well. All of Bella's nurses commented on this massive noodle coming from this tiny child's chest. The best part was when all her nurses that knew Bella's history were like, "This noodle is da bomb!" When we lifted Bella's shirt this guy would roll out like a never ending coloured scarf from a magician's sleeve. There would be no blocking, cracking or breaking of this beastly cvc line. Everyone knew what this little girl had been through by this point and Mr.Rigatoni was just what she needed. 

He went on to fulfil his purpose of providing our daughter a fast track of blood supply and pain free blood draws. We needed him weekly for many months. He was also a fail safe, a safety net for us in-case anything like this ever happened again or if she fell ill and dehydrated rapidly...Mr. Rigatoni was there.  He provided her monthly IVIG infusions and when January 2017 came around he was there for the emergency bowel surgery and Home TPN we needed him for there after. 

As great as he was for Bella and as badly as we needed him for all the reasons we didn't even foresee...he was also the last straw when it came to me having to let go of any chance at getting back to my full time teaching career. There was no say on how long we would need him for therefore no chance at Bella going into Childcare as long as she had Mr.Rigatoni. 

Apart from being the best noodle Bella has ever needed, he did have his days. He got infected once causing that 12 night stay in hospital. He let us down that time, by allowing those pesky Gram Negative bugs to set up shop inside his tunnel. He fed them and housed them for a whole 12 days. I was quite angry with Mr. Rigatoni and so we had a little chat. He explained that they were Gram Negative bugs and not the life threatening Gram Positive bugs that had attacked cvc line #5 and caused Sepsis in Bella. He reassured me that once he gave them a little antibiotic therapy and training...he would send them on their way. Which indeed he did. 

Oh! and not having to saranwrap and tape Bella's entire chest before a bath has been amazing! I can just put her in the tub! Can you believe that?!...just plop her in. I'm still beside myself with the time we are saving and the pain from the tape pulling is no longer there! 

So apart from some small normal mishaps, Mr.Rigatoni was the biggest and best line Bella has ever had and we are happily confident he should be her last.

Bella's Last Bath with Mr.Rigatoni.

You take me to the top, I'm ready for
Whatever it takes
'Cause I love the adrenaline in my veins
I do what it takes

Now This!

You are going to love why January 22nd, 2018 is going to be a pretty awesome day...

It's coming up! Pretty soon here. January 22nd is going to be the day where Bella has finally spent more nights at HOME than in Hospital!!!  Can you believe that! We are finally reaching that day! Yes I'm using exclamation marks a lot because I am shouting all of this paragraph with utter joy! So, on January 22nd Bella will be 4 years, 1 month and 16 days old. And on that day she will finally have spent 651 nights at home, finally making the amount of nights spent at home longer than her nights in a hospital bed! Eeeeee!!!!!

Hypocritical, egotistical
Don't wanna be the parenthetical, hypothetical
Working onto something that I'm proud of, out of the box
An epoxy to the world and the vision we've lost
I'm an apostrophe

Checking In

Before I get in to all of Bella's GI/Bowel updates and Immune system treatments/issues, I need to address something with you all before I continue my writing. Because this is my heart, my therapy, my work...it is also me trying to allow my writing to be a vehicle from your computer screen in to my mind. I'm letting you in to my mind, heart and soul. You're coming to me, reading my heart, getting to know my story. Therefore I need to make sure you understand my purpose. So this is just a little check in I'd like to mention to try and prevent anyone getting the wrong impression when I go on to explain things. 

The reality of it all is I know I put on a smile when talking face to face or generally share only positive news and the rough stuff, in a hopeful light...but when I share what actually happens in these blogs...when I get to the nitty gritty of the details and perhaps trail off with bits of negativity...please know that what I'm trying to do is to have you fully understand what Bella really endures most days and that it can be really hard on her. But I need to share the negatives to be sure that the brute strength my daughter holds gives hope to some. Or that all the smiles you see from her, is her brave face shining through tough daily shit that no child should have to go through...that these details show how my fierce girl earns her Brave title on a daily basis, still. 

So as much as I don't want to come across to others as 'complaining a lot' I also don't want people to get the wrong impression of how strong my little nugget is. She bares a lot and smiles through it. The happy, daily butterflys and rainbows Facebook posts actually have a lot of dark daily slimy slugs lurking in the background.  Often, the contagious most beautiful smile you see on her face is her, grinning through a major amount of painful moments and that really is a true testament to her bountiful strength at such a young age. 

'Cause I love how it feels when I break the chains

Butterflies & Rainbows

Slugs

The Blue Lyrics I'm Posting Between Paragraphs

For those of you who have followed my blog for a while now probably already know why I do that, but incase you are a new follower I'll explain a little further.  Quite often songs really, and I mean REALLY speak to me. As cornball as that sounds its the truth and the best way I can explain why I post a lot of different songs with my writing. Not only am I a fan of Imagine Dragons (The artists behind the song on this blog post 'Whatever It Takes') but my God they write good music. As soon as I heard this song (like songs have done for me many times before) my brain just starts firing off ideas for my next blog post and what I want to write. The meaning behind the lyrics often trigger a really great thought process for me that helps me write about what I or Bella are going through. 

I'm just a symbol to remind you that there's more to see
I'm just a product of the system, a catastrophe
And yet a masterpiece, and yet I'm half-diseased
And when I am deceased
At least I go down to the grave and die happily
Leave the body of my soul to be a part of me
I do what it takes

GI/Bowel Updates

The Good

The good isn't just good, its really amazing. Bella has been able to start attending a DayHome in preparation for me to be able to go back to work. The caregiver there has, without an ounce of hesitation, been ready and willing to care for Bella given her medical needs such as her compromised immune system and ostomy pouch! I thought I would be searching for months and yet here we are with a confident, willing caregiver watching Bella and giving me the secure confidence to leave her and go back to work. This feeling is truely priceless. 

I created this binder of all possible scenarios our Day Home caregiver may run in to with all of Bella's medical needs. I used pictures along side quick notes.

Bella at DayHome

Bella has been growing well and remaining energetic and healthy! Her bowels are tolerating new foods very well and currently, to keep her bowels operating so so well... it is more about how much at one time vs what she eats. So the strict gluten free or lactose free is not really a factor anymore. Its more about small amounts of foods more often. This routine has shown to help her bowels immensely. Fluids are her friend and she is loving all my experimented shakes! Banana and spinach shakes are her favorite. Her bowels love love love liquids, so we get pretty creative with those and this helps lessen the moments she cries over foods she can not have. Although she still has quite a lot of food restrictions, at least I can say she can have a little bit of something now, instead of nothing at all.  Bella is growing so well that it is physically showing. Her hair is thickening and getting longer! She is growing so well because her bowels are truly at their best and taking in all the nutrients from everything she eats. So much so that now we can start backing off on her super expensive specialized formula! Can you hear my wallet cheering in the background? So now Bella can tolerate more nutrient rich foods with the support of multivitamins/extra iron/VitD and Zinc. 

I guess the biggest question I get these days is, " How is her eating going?" The most simple way to answer is her bowels tolerate about 60% fluids and 40%solids right now. Her portions need to remain small so its best that she never has more than 1/2cup of any solid food at one time. 

The Bad

I think a lot of what I see as 'the bad' is just in my head at this point. This ostomy pouch has helped her bowels operate at their best and make Bella feel the best shes ever felt! But I get scared of what the future may hold for her if she continues to need this ostomy pouch. The fact that they are built for a regular sized 4 year old or older person to empty the pouch directly into the toilet doesn't work for Bella...and when will it ? if she has to keep this pouch... We don't know her growth rate, that's a wait and see. So the bad for me is wondering what is to come and how do I help her become bathroom independent before school? This keeps me up at night, I can't sleep, thinking about all the possible scenarios. And that's exactly what anxiety does. It puts blinders on you so that you can not see ALL the options. I'm scared for her because I can't see all the options right now. 

The Ugly

The ugly is Bella crying out in the middle of the night, "Help, Mommy help me." So much of me wishes it was just a nightmare that I could spend 2 minutes comforting her from and she'd go back to sleep...but it's not that at all. She's instead shaking cold because I have had to strip her down due to her being absolutely covered in stool from her pouch leaking or the wafer coming right off. When this happens 2, 3, 4 nights in a row it's just horrible. I need to strip her down and prepare a bath no matter what time it is. She can't just go back to bed after the warm bath either because next is the process to get a new pouch on her. And if its a pouch that I had just put on and only one little section leaks, the remaining parts of the wafer that are quite secured to her skin are painful to peel off. 

Whats worse is, well its been a year now since she has had this pouch so I know what it takes to keep it on her skin. I know why this continues to happen and its an uphill battle that I'm not sure we are going to win. So from her 4 previous bowel surgeries, the surgeons had to leave quite a long, deep scar across the middle of her abdomen. With Bella being a little person this does not leave us much realestate to work with on her tiny belly. So besides the scars there is the placement of her fistula less than an inch above her stoma. (Her fistula leaks fluid sometimes, wetting the wafer from the outside causing the wafer to peel off and leak stool.) IT would take another surgery to move the Fistula, just for that reason. And the scars, well... the wafer has to stick right over top of the longest part of her scar. So no matter how much ostomy paste or 10 other products I have tried for this specific reason, the acidic stool from the small bowel (ileostomy) eats through it all like the strongest acid in the world. It pockets in the scar crevice and lifts the wafer causing leakage. 

    On top of all that "ugly" sometimes this doesn't just happen at 2am, it happens during the day too and often I find the both of us in puddles of tears because she has to go through this uncomfortable experience we are trying so hard to prevent and it still causes her pain. And a few times it has happened around the same time I have had to discipline her for something that you normally discipline a child for and I just feel absolutely horrible. Regular discipline after anyone of these pouch situations is so hard but I want to raise a decent, compassionate human being. Its an ugly struggle and I'm so open for advice or ideas. 

   The ugly is also when I have to take Bella out of so many fun activities, abruptly because we notice the stain leaking through her shirt and it has to be dealt with right away to prevent it from getting worse, getting on anything or anyone. This really sucks. Just to rip her away from a fun activity or even simply just her resting, to fix this nasty leaking pouch, just sucks. 

What's Next

Bowel Motility Study is set to happen March 6th, 2018. This particular study has been set in place since around the time Bella came off TPN and her bowels showed signs of functioning enough to have Bella grow without the need of TPN. Bella's Calgary GI specialist and surgeon at ACH will be doing 2 things for this surgical procedure. 1. They will be taking small biopsies of every section of her entire remaining small bowel (intestine). 2. They will look at the lower rectum area (where her colon would be if she had one) and see if it is possible to take away her pouch and reconnect her bowels naturally. 

   Bella will be put under for this surgical procedure and they will be snipping out pieces of her bowel for biopsies but this is not a surgery and we should not expect to have to stay long. Recovery should be quick. They will be going in via scope style to do the procedure. They will use the scopes to go in through her stomach Gtube button hole, her Fistula and her Stoma.  We are happy she still has her Gtube button, this saves them from having to put a tube down her throat. 

  Bella will have to go through all the "normal" surgical prep like not being allowed to eat or drink for so many hours prior, although this may be a bit more extreme due to the fact the procedure deals with looking at her entire bowel from her stomach down, sort of like a Gastroscope that goes all the way from your stomach to your bum. I haven't received the call yet from the nurse telling us exactly how long Bella will have to be NPO before and after...but I am guessing it will be quite long and difficult on Bella. To me, this is surgery #16 even though they arn't cutting her open...it's pretty intense. 

  A lot rides on this Motility Study procedure. A lot of 'Whys' could be answered. Why Bella's bowels have done what they have done can't ride on the Hirschprungs Disease (HD) title anymore, it is way more than that now. HD affected her whole colon, her entire colon was already gone when the major life threatening bowel blockage occurred further up in her small bowel January 2017. It is something they have never seen before, something without a name and something her entire team of specialists, nurses, doctors, etc have been trying to fix & control for a while now. These biopsies could possibly give them so much more information to help make Bella's quality of life even better. This also gives them the opportunity to look at Bella's bowels when it is not an Emergency Surgery, which all of her previous 5 bowel surgeries have been. We will be quite eager to hear the results of those biopsies when they are completed. 

   Secondly the pouch. To pouch or not to pouch, will be her surgeon's question. It is obvious they will do their best to see if a reconnect of Bella's bowel is possible but if not, at least we know she is thriving while she has that ostomy pouch. Honestly I have done a complete 180 when thinking about all of this. Back when Bella came out of that emergency surgery with a second ostomy pouch I was devastated that we all had to go through that again. (She had her first pouch from age 3 days to 7 months.) And now, honestly...I am scared of what may come for her without it. I do not want to ever have to put her through another suppository again, or see her paralyzed with pain from a grossly distended gut. After many discussions with her amazing team, we also know that there really is no harm in waiting. If they are not 100% sure a re-connection could be successful for her bowel motility, then we won't plan for one. Instead we will give it time, wait until she is older and then take another look. We all know Bella is at her best right now so there's no rush on this. 

It was so hard to hold back from being a happy blubbery mess after I witnessed this moment Bella had while eating with all of her cousins at Christmas. Emphasis on 'eating with' her cousins. Remember back to when we couldn't eat in front of her because she could not eat? This picture holds so much joy for us. 

Bella's Immune System Updates

Get your notepads out, I'm taking you all to school. The best way to understand what we have to do for Bella's Primary Immune Deficiency, is to learn about the immune system itself.  Also, I believe my confidence can make this quite confusing for people. That may sound a tad cocky but trust me the fear of some anti-vaxer's child infecting mine with a disease that can kill her because her immune system can't fight on its own, is STILL VERY MUCH TERRIFYING TO ME ON A DAILY BASIS! Pardon my yelling.... But I do prefer to confidently educate in a kindly manor vs hide scared in a corner sucking my thumb. 

Bella's current immune system has 100% Tcells, the virus fighting cells. It however has not yet produced any Bcells  and its been just about 3 years since her Bone Marrow Transplant and 2 years since that necessary evil med, Rituximab that was used to end her Hemalytic Anemia attacks but in turn, wipe out all of her Bcells. You need 100% Tcells and  100%Bcells working together to make a fully self sufficient working immune system.  A functioning immune system creates antibodies to protect us from infection, bacteria, disease and viruses. Hence, why we get vaccines and immunizations. These help our immune system create antibodies against deadly diseases, so WE DON'T DIE. Pretty easy concept to understand...for most people. Bella's immune system can't do that, it can't make the antibodies...so we give them to her through the IVIG infusions. You may have often heard me say her IVIG is her monthly Immune Booster. So the problem here comes because the IVIG only protects her for a month at a time and then it wears off and then she is vulnerable again to any idiots...sorry, "clearly uneducated people" out there who may not immunize or vaccinate their children. And so now that Mr.Rigatoni has left us, we can no longer give her these 4 hour long IV infusions of Immune Boosters.

Difference between IVIG and Subq:
     Let me back up a little bit and explain what we know about Bella's Bcells. Their non-existence is the reason why Bella needs these treatments that have gone from monthly IVIG to now a weekly Subq. So in simple terms her number needs to be above 5 for these treatments to stop. That's the easiest way to explain this. If her number was ever above 5 it would have meant her Bcells were growing and forming on there own. It would have meant we could have stop'd treatment and saw that her Immune System was making its own antibodies...but it never did. Instead her monthly IVIG would bring her number up to 5 where she was protected, and within 3 weeks it was dropping, falling down to 3 or below, so wearing off and leaving her vulnerable at the end of the month. Recently, for some unknown reason (Gawd I really am getting sick of having to say that) her numbers had fallen to 0.3! And during one phone call back in September her Immunologist had told us to keep her on strict isolation until her next IVIG infusion. A lot of fear came flooding back that week.  Subq is better in a sense that it will keep her number stable at 5 and the weekly treatments are often for the purpose of not letting her number drop and therefore not allowing that chance for her to become vulnerable immune wise. So although we have to poke her legs once a week now, that's really the only negative right now.

So now, to give Bella her Immune Boosters called Subcutaneous infusion. I like to short form it to Subq which means 'under the skin.' She doesn't have the cvc line direct blood vessel access anymore so instead we inject the IGG (Immunoglobulin aka: Immune Boosters) into her thighs with tiny little needles. There are positives and negatives to this weekly treatment.

Negatives
  The poking, learning to poke her and wondering if she'll need this for the rest of her life, is a pretty harsh negative. We have had so much hope around her Bcells coming back and ending these treatments, yet here we are, on year 4 of these infusions with no end in site.  There was a lot of anxiety for me in the beginning around figuring out how to make this comfortable for her in as many ways possible, and how I would build the confidence to poke her with needles, weekly. The support from our homecare nurse, the company Hizentra and our Immunology team has been so amazing. Each one of them reassured us that both Lyle and I would have no problem with this and Bella will do wonderful, and she has.  Bella has had roughly 8 Subq treatments now and only one was a little rough because I didn't use enough numbing cream... talk about huge mommy fail. (I'm cringing inside right now too.)
   Other than that it was quite un-nerving to read and learn about the possible side affects of starting this new treatment. "A fall in blood pressure with Anaphylactic reaction" ... Quite the confidence builder there. Just go ahead there Kyla, poke Bella with this Immunoglobluin, created from other human's plasma and after the product begins flowing into your child's body, sit there and try to slow your breathing down wondering if she'll stop breathing. Even with my nurse reassuring me there's 0.00001% chance of this happening, it was hard to get that fear out of my mind. I mean for years this blood product was pumped into Bella. inside a hospital, with multiple nurses and doctors in the room and an IV reaction line hooked up along side her infusion line. Those are confidence builders! We do the same treatment now, at home, alone.
   So what would we do in that 0.00001% case? Well first, please agree with me in prayer, that reaction or any negative reaction, will never happen. But for every treatment I set up a dose of Benadryl for Bella's current weight and have it out and ready to flush quickly through her Gtube button, directly into her stomach. Nice perk of having a Gtube button, she wouldn't have to swallow it while gasping for air. Then I would call 911.

Positives!
   Her treatments can be done at home or anywhere and the pump is spring loaded so no need for batteries or plug-ins. We no longer have to sit in a hospital for 5-8 hours for the treatment! It keeps her IGG levels up without letting them drop. The numbing cream is working great and for 7/8 treatments she didn't feel the pokes. The weekly treatments only take 40 minutes! And I can add once again to my Medical Momma portfolio for when the opportunities come to help other parents in this similar situation.
Whip, whip
Run me like a racehorse
Pull me like a ripcord
Break me down and build me up
I wanna be the slip, slip
Word upon your lip, lip
Letter that you rip, rip
Break me down and build me up
I do whatever it takes

'Cause I love how it feels when I break the chains!

On Jan.2nd 2018 (Just last week) we took Bella to her first Public Pool swim! She loved it so much and was smiles the whole time! I'm so happy she enjoyed it, she starts lessons next week! Her pouch wafer also stayed on very well during the hour swim and after! I think this was due to using a spandex ostomy belt under a tight wetsuit. Gosh, it was such a joyful hour swim.

    Thank you again for following our journey. Please feel free to enjoy more fun updates, photos and videos on our Facebook Page: Isabella's Mustard Seed.