Day +97 • 1month Post Discharge

Went to clinic this morning for normal bloodwork, nurse takes more blood than I had expected, and I think nothing of it. Then I get a phone call later this afternoon from our BMT nurse... "Oh by the way, we drew her +100 day blood work today."

I'm like, "Whaaaaa!?!" 

At first I was pretty upset that I missed knowing a major panel of bloodwork was taken from and for Bella today... Then Lyle helped me realize what this actually meant once I got over my little hissy fit because I had planned out her whole Day +100 (a day in pictures for the blog) including pictures of when they take the blood. 

A little lame I know... But Friday is still her Day +100, and it'll still be an awesome celebration. Anyway, so back to why taking this panel of blood work early is awesome! It means earlier results, the doctors are confident they'll see the results they want from Bella's new immune system. It means we are a jump ahead and 4 more days closer to HOME!! Whenever that is...

We will find out the specific results of this chimerism, Immune Deficiency Panel bloodwork on Tuesday from Bella's main BMT doctor. This test will also set the new isolation or less isolation protocol for Bella as well. 

Exciting news in 1 week! 

More To Come:

So on Friday Day +100, also marks a time when they can start taking Bella off more meds and weaning meds as well. This is essentially the 3 month post BMT mark and the earliest they see her new immune system in action. It'll be nice to not have to give 8 different meds around the clock. A few of these profolactic meds come off or down now because her immune system can start doing that work and learn to protect her from infection itself. 

Bella is still moving and growing so well. I took a pic of her whole play area in our room today just after I cleaned it. (Top. Pic) I sat her down in the middle. I always like to see what she decides to play with first. Books. Yep, her love of books is still strong. It's harder to read to her now though. She wants to point at everything on the page and hear me tell her what it is instead. She's taking in so much these days and it amazes me, the rate she is learning things. I'll go through one book with her and the next minute she's flipping through it, pointing and saying the objects names or sounds. I love it. Watching her discover and learn new things is the coolest feeling. 

This Coming Week

Well we will be right in the middle of Calgary Stampede when we find out Bella's new isolation protocol, but we won't be jumping in to big crowds of people right away. I'm still going to be on protective mode for a while. We only want ONE bone marrow transplant people! Haha. So even though we got Stampede, Canada Day, and a Parade at ACH this week, I am still going to be keeping it low key with Bella and stick around the Ronald House mainly. 

Feeds

Bella is still doing great with her eating and basically snacking during meal time. It's been easier to get her to want food during the times I have to have her Gtube bolus feed running (running formula into her stomach). 

This is better than having her snacking all day. As excited as I was about that, it doesn't really help when we want her to understand the "I'm hungry" feeling and how food helps that, at the time. This is some helpful advice coming from Bella's SLP/OT/Dietician. So I had to transition her from constant requests of food all day, to giving her food during her 4 bolus feeds, and 2 other snack times in a day. She adjusted really well. The break from food between 2:30pm - 5:30pm is her longest wait but it helps so much for when she eats supper. I find she's eating more food now at that time. She's also doing better with one of her sippy cups and she actually took a sip of water from a real cup the other day, that was fun! We'll practice that more in the bathtub. Ha ha. 

Jazz'd up my Mazda a bit.

Funny Story

Lyle and I took Bella to the playground at the hospital and sat on a bench about 20 feet away from the swing. We were chatting when the lady (who's daughter was on the swing) came up to us. Her daughter had a mask on so I assumed she was immune suppressed. So the lady comes up to me (keep in mind my 3 stroller signs are dangling in her direction as she approaches) and asks me if my daughter is sick, because if she is, then we need to move further away from her daughter, who is already a good 20 feet away from us. 

I chuckled in my mind and thought,"Lady... of all the kids, Bella is the only one you'd WANT near your daughter." Haha. 

Anyway, I gently reassured her that Bella is absolutely not sick and that she is also immune suppressed and then pointed to my stroller signs saying I share the same concerns. 

Then I laughed at Lyle cause he always jokes about people maybe thinking I'm a crazy mom with my stroller signs (I really should put "Immune Supressed" on them) but regardless, I'm not running up to people 20 feet away and making sure they stay even further away. Ha ha... That's a little more cray cray then my stroller signs. But hey, I'm sure that mom only wants ONE Bone Marrow Transplant too People!!! Haha

A More Difficult Normal

I feel I want to share this bit because I still find that many take too much for granted and in Bella's case, there are a lot of things that are still really hard for me. As amazing as it is to see her thrive, I'm trying to keep up with the enjoyment and not let our "difficult normal" drag me down. It's hard, and as much as I love helping others and giving tips, I am open to helpful tips as well. Lots of what Bella needs for a simple feed, bath or play takes so much prep and its wearing me out.

Giving meds every other hour is straining on the mind. I don't want to screw them up. On top of that I need to prepare the supplies, carry the supplies at all times and work around a busy toddler to get to her med port and feeding tube attached to her stomach. I must draw up the med, and the flush, give them to her on time, and make sure all the supplies are clean and sterile at all times... For the 8 different meds and feed times in a day. 

Its our normal right now, but not an easy one. 

To prepare for a walk is more than your average diaper bag. It's also all her feed pump supplies, and emergency kits for her Central Line and Gtube. Or attaching the bags and tubes to her stroller. I almost look like I'm moving out just to go for a walk. And the masks, covers, meds, supplies, etc to go along with. 

It's our normal right now, but it's a difficult one.

I find bathtime is bittersweet, and then bitter again. I can't just undress her and plop her in the tub. I must cover and tape Bella's Central Line area so no water touches the site, it can not get wet or infected. So this means trying to pin her down to get this on properly so no water leaks through. She has to sit in a tub and the water can't be too high but she still enjoys splashing and playing with the bath toys. Its a bit nerve racking making sure the bandage doesn't get wet, would not want to replace that too early. It's painful to take the bandage off now because it sticks so well to her good skin. She cries quite a bit even when I try to use adhesive remover to help get it off. (The Central Line bandage has to be changed once per week) 

So after bathtime is hard on Bella again because now I have to remove the waterproof tape. Ouchy. She's more hairy all over from one of her meds... Add tape that I have to put on and take off for every bath time... Not fun. On top of that, our difficult normal means no chance to experience swimming for Bella... that'll have to wait.

Lastly, our normal bed time routine. I need to put the O2 prongs on Bella's face before bed as she still must have Oxygen at night. If she's fallen asleep in my arms and I forget, I need to try n get those little prongs in her nose and secure the tube line by taping it on her back. This usually helps avoid using the stickers  on her face. We don't ever want to go back to tape on her face, not after 11 months with an NG down her nose and oral aversions. Anyway, hopefully by next week we can scratch this off Bella's bedtime to do list as she will have an overnight Oximetry Test on the 7th which will hopefully proove she no longer needs the nighttime Oxygen. 

Looking Forward to an Easier Normal in the Future.  

Beads of Courage Update:

Check that out! Along with the very first picture of this blog post, it's nice to see how short her line of beads are after discharge from hospital. 

In this last pic, I compare her month out of hospital to her 1 week during transplant. Almost the same amount of beads in 1 week inpatient as in 1 month outpatient. Crazy. The yellow beads were the in hospital stays and between them is 1 week. 

Her new beads now are the blue beads. These are the beads she gets for every clinic visit as an outpatient. 

Don't forget, 

Sign up through OneMatch to be a Donor if you haven't already, and get your cheek swab kit in the mail! 

Day +93 with Our Busy Bee

"She's got eyes of the bluest skies

As if they thought of rain

I'd hate to look into those eyes

And see an ounce of pain"

Today at Prince's Island Park(Friday)

I love music. How it intensifies emotion, brings memories and puts feelings into perfect words. Sweet Child of Mine has been playing a lot lately on my Songza playlist for when I get Bella ready for bed. It got Lyle and I talking about how extremely weak have become when she even whimpers for a moment. She's got us hook line and sinker, wrapped around her finger for the rest of her life...not an ounce of pain. 

Busy Bee Bella is motoring all around our room now. She's doing even better with her walking (while hanging on to things) especially with her beautiful shoes! I met a beautiful, strong mom who's little one was just diagnosed with SCID. Thank God for the amazing connections through Facebook. She made Bella the georgeous gold shoes in the photo. 

Updates: 

Counts

Bella's doctors are so happy with her steady growing counts/immune system. She is still maintaining her own IGG level which is at 8.8 now. So she still does not require any IVIG infusions. (That would mean 3 hrs hooked up to IV lines in clinic if she could not keep her IGG above 5.) As often as I ask her doctors about exactly how much better is she doing than "normal" they continue with the same reply. They tell me they have seen such a small SCID population at ACH (4 children) that they can't compare really. And that even with the entire world SCID population that they know of, there is way too many varying types of SCID and each patient if so different because of the spectrum of SCID. What Bella's docs can tell me, is given that she is THE worst SCID case they have seen, she is having the best recovery and progress they ever could of imagined. Keep it going baby girl! 

So we were working towards only going to clinic once per week because she's doing so so well, but that's on hold because of a med level issue. Nothing major, just means we have to be in clinic almost every other day for bloodwork. Once we have this med level under control (in hopefully less then 2 weeks) we can then try for just 1 clinic visit per week. For now we continue with 2-3 and maybe 4 visits in 1 week.

Feeds:

I don't just wash her shirts because she wore them all day now, but because they are covered in food! Also, I can say Bella is swallowing solids now. Quite often I'm sitting bedside her as she eats looking around with this massive cheery grin looking like I'm at football game coaxing everyone to cheer more. Its just so exciting when she eats. She ate pieces of chicken last week and for the first time put a piece in her mouth herself, and swallowed it! She's trying pretty much everything I give her: pudding, pita bread, hotdogs, crackers, celery and cheese, dipping veggies sticks in dips, fruit, etc. 

Bella is not doing the best with her sippy cups, but she's trying. She's slowly getting the hang of the sippy with a straw. 

 Gtube Feeds:

In the last month Bella's little tummy has been handling 1/2hr bolus feeds very well!! Her motility is so good and she should be coming off her motility med soon. She is just on a therapeutic dose now so it's like her bowels are doing 90% of the work anyway. It's a breath taking feeling to wake up everyday with the bowel issues behind us. No more puking, gagging or distension. I can't believe that used to happen to our baby girl multiple times a day. I'm sure it's part of the new cells doing their job as well, from the BMT.

Get'n her lean on while munch'n in her stroller. 

Physio

This is Bella's daytime/playtime brace. Needs some Bedazzling or Bejewleling I know. Ha ha. It helps bring out her thumb and support her wrist to make for a better grip on toys, cups, etc. She'll wear this until her next apt in July, with her specialist doc for her nerves/wrist. 

A fun activity that her Physio coach has her trying is reaching on her tip toes for stickers that I place at various heights on the wall.

Bella is moving so well these days. A little over a month ago she still wasn't quite able to sit herself up from lying down. She is doing quite well at that now, even when it's bed time and she rather sit up to play in her crib:

Being at RMH: 

Well, in a bittersweet fashion we celebrated being at this RMH in Calgary for 1 year on June 20th. June 17th, 2014 was when Bella was admitted to ACH for the first time and 4 days later we first stepped foot into our temporary home in Calgary, the RMH of Southern Alberta. 

We spend a lot of time in the backyard playground area at RMH. Part of her protection protocol from her doctors is that she is not allowed to touch grass, plants, etc. So I lay out a huge blanket that she crawls around and plays on. Her favourite outdoor activity is going down the slide and building towers. And twice with her towers she has insisted on making a pattern! (As you see in one of the pics) She starts her tower, so purple. Then I offer her a purple block and a different colour. She chose the purple! She repeated this 4 times on her own. Super smart. 

I love all my mom friends and dad friends that I have met being at RMH. Some have had a very long stay as well and we become really close. They help me so much when Lyle has to be in Swift Current working and maintaining our home, our acreage. Thank you all, you mean so much to me. I thought of a Parent to Parent Connection board idea for RMH. It's purpose is to use these valuable relationships between parents at the RMH to help each other out. RMH staff will have a meeting about my idea next week and I hope it gets approved. I'll keep you all posted on that. 

This was an important post I made on Facebook this week, sharing a post from RMH. If you can truly understand what Post Traumatic Stress Symptoms are, for a hospital parent, then you can really help them. 

As well as Bella is doing, I have had some major struggles. I've talked about this before, how being only in high stress traumatic scenarios with my baby as a first time mom, for so long, makes it extremely hard to cope with simple, normal baby problems. I have found myself so on edge, stressed, upset and unsure of what to do or how to settle Bella because my brain goes straight to the serious problems. Is it infection? Bowels? Fever from infection? When all it may be is a simple gas or growing pain. After all this time I still struggle to settle myself so I can settle Bella. So I made a reminder note that I posted on my closet and read it everyday. 

Genetics: 

I haven't talked about this area much but it is huge. It's also quite a lot of large, confusing words so I'll try to keep it simple. Our Genetics doctor who has been with us since we arrived in Calgary has helped us so much. He has also worked closely with Bella's Saskatchewan Genetisist from Saskatoon. A long story short, with Bella's SCID, there is a 1 in 4 chance of our next child having SCID. We can not fathom chancing that percentage to possibly have to go through another year in hospital and another baby needing a BMT. Not to mention it would be extremely unfair to Bella. She has done her time in hospital, I would never make her go back. Therefore we have basically 3 options, and according to Lyle and I we have one.

First option is adoption: In our mind it's the same chance as Lyle and I meeting and falling in love. Really, it's the same odds unless we do embryo selection, which we would do with our own embryo.

Second option is to conceve and test the embryo. We could not do this because this could involve termination after 9-12 weeks, and we can not do that. 

Third and only option: IVF and embryo selection. With the genetic testing they have done on Bella, myself and Lyle so far, they could take my egg and Lyle's sperm, test the embryos and implant the uneffected in to me. This would be the only way to be 100% sure our next baby would not have SCID. 

Our Genetisist doc has found out that Saskatchewan does not have a program for this procedure and would refer parents to Calgary anyway. So we have a meeting set up soon to discuss this whole plan. More news to come on that at a later date. 

Bella, Grandpa, Grandma Heather and me on Father's Day. 

Facebook Page:

I started a Facebook page for Bella titled the same as her blog, Isabella's Mustard Seed. This will make it so much easier for everyone to follow her progress. It was too much to have to add people as friends to my timeline. This way with her own page you just have to 'like' it to follow her and this blog. Also if you're friends with me on Facebook it would be too many "Bella Posts" from my feed to everyone else's. So I hope everyone enjoys her Facebook page and finds it easy to navigate. I have been meaning to make a History Blog Post soon, right back from when I was pregnant. I sort of gave a mini version of this in the 'About/Long Discription' section on her Facebook page. This page also allows for example, the RMH house and staff to follow Bella's blog/progress as they are not allowed to 'Friend' parents on Facebook. Please feel free to pass her page on and share it. I also realize more people find it easier to comment on Facebook than on the blog,so this page will help with that as well. But if you can comment on this blog, then that's great too. 

Here's the link to her Facebook Page:

https://www.facebook.com/pages/Isabellas-Mustard-Seed/848573408556136 

Well, we are now 6 days away from Bella's Day +100 ! 

Her 3 month chimerism/blood test/immune system test will be drawn that day and sent to lab. This is the time where they hope to see how her Tcells and Bells are functioning. They also make sure all of her cells are donor so that they are all there and functioning, creating her new strong immune system. This is going to be some very exciting results that we hope to receive by July 7th. Before the 3 month mark all her new donor cells are still finding where to go, set up shop, are still little baby cells and learning what to do. Now they should be out of that stage and showing how they are functioning and acting as new cells in Bella's body. I still have to find out if her blood type has fully changed over as well, from hers (O) to the donor's (B). 

Stay Tuned! :)

 

Exhaustedly Happy • Day +84

I think that's the best way I can describe the last 3 weeks since we have been discharged from the hospital to RMH... Exhaustedly Happy. 

Day +81

It's been busy, but a good busy. Bella has not been sick in anyway, no temps, no scares or worries. And I'm starting to see my little girl transition from a baby to a toddler. She is motoring all around the room and everywhere. I'm so tired, but I'm so happy. 

What's New • Medical Updates

June 2nd, 9th & 16th Counts

Bella's counts are steadily going up and looking great. Her doctors are pleased with every blood draw from her clinic visits. They are so pleased that they may change her clinic visits to once a week! This is a huge deal given that she's only 3 weeks post discharge. For her doctors to be that confident with her progress is such a huge step and her blood counts are proving it worthy. Bella is even able to decrease more of her 8 different medication doses. To wean meds early is great too, they are very expensive. For example her gut motility meds. Remember the torture of her gut issues from the beginning...not an issue anymore! Bella hasn't puked or had motility issues and her bowels are working wonderfully. We may be able to stop her motility med next week! 

Bella's tasting/learning to swallow again is still improving! I was blindsided by a tantrum of hers because I didn't give her a cracker on demand! These are real baby issues, yay us! I loved every second of her pissed off freak out over wanting a cracker NOW! I loved every second of it. She is also starting to bite off little chunks/crumbs and swallow now! Yes I'm yelling with excitement with all these exclamation marks!!! Lol

I'm still over the moon with her want to taste, suck, munch, lick, etc. We still have a ways to go with Bella's eating. She's still only at 100mL bolus feeds  with only 2hr breaks between Gtube feeds and still on continuous feeds at night, to meet her full calorie/nutrition requirement for the day. So the reason why I'm so happy about her wanting food is because she's still not really given the chance to get hungry yet. Can you imagine how awesome she'll be at eating when she gets a solid 4-5 hour break between meals! 

Because Bella's been doing so well it has allowed her "wrist doctor" to take closer looks and make plans. Her BMT docs didn't want any other specialists doing anything else until 3 months post BMT at least.  So now she is allowed to go to the clinics of the other specialist that follow her, ie: her wrist doctor.  You may have noticed that Bella wears a wrist brace at night and her right  wrist has some sort of nerve damage from birth. They have speculated Radial Nerve damage but they need to do more tests to really know what is going on and what the fix is. Regardless of her limited grip and motion with her right wrist/hand, Bella uses it to the best of her ability. They have said she could still very well be right handed or become ambidextrous because she continues to use her right hand so much, regardless of the limited grip and motion. Now that her wrist doc has the go ahead from her BMT team to do more tess, they may look at doing a Tendon Transfer when she's older. 

They have told me, we may never know why Bella's wrist was damaged. They speculate it was positional in the womb, "stuck/cramped."  He has also seen similar cases where a nerve from the babies neck leading to the wrist is damaged with the way the baby is pulled out at birth. It doesn't really matter why, but there is a good chance they can fix it! Basically she has limited use of her right hand because of some sort of nerve damage. Bella's powering through and using it any way she can regardless and that is reassuring it won't slow her down and it doesn't frustrate her. 

You may have noticed Bella has more hair lately! I'll have to get a close up pic soon but she has more hair now then she did before chemo. This has a lot to do with a med she is on for her transplant. This med really makes you hairy all over. I'm just in love with her headbands actually holding hair back these days! 

It's quite cute to see the long peach-fuzz all over her little body. Because she's so fair you don't notice from pics, but when she's in the tubby it's pretty cute. When she's done this med, the body hair will go away but her head hair will stay of course. 

Trips & Fun

With outside being the best germ free place for Bella we have been able to get her out on more mini-trips! Her BMT docs were quick to remind us though that they still do not want us going out of Calgary city limits. We stretched that rule with 2 trips and broke it a tiny bit when we ventured a half hour out of the city to Bragg Creek. 

I drove Bella down to Edworthy Park and walked riverside with her. We stopped by an ice cream store window to grab some yumyums. I put her mask on because there was a few people around. I was sad to have to step in front of a little boy as he reached out to touch Bella and move his arm back. He was curious about her mask. I explained to the mom that Bella is immune suppressed and to my surprise she said to me in a huff, "Well he's just curious." I pointed to my stroller signs and said, "Germs are too dangerous for her right now." Thinking that was a more simplified explanation,  she still looked at me like I had 3 heads. 

I'm not going to get discouraged, this is like practice, I'll get better at helping people understand and become more aware. I need to remind myself not to get upset, I wouldn't wish the experience of chemo, a BMT, or immune suppression on any parent, just so they would "get it." 

I'm still nervous about going back to Tim Hortons though... Haha.

We enjoyed a beautiful Saturday in Bragg Creek and went on some nature hikes on the trails near the creek/river. We sat on the patio at a restaurant and had our first family lunch date together. It wasn't busy and we were the only ones on the patio, so it worked out very nicely. 

Saskatoon Farms, South Calgary.

Those are the Sasktoon berry fields behind me in the coulée. 

This was a beautiful place to visit. They had a massive tree farm, berry coulée, mini zoo, plants, flowers greenhouse and stores. It was like a mini fair grounds for plant lovers. 

Yes, Lyle bought trees. Regardless of the Saskatchewan drought we are facing back home at our acreage... Lyle bought trees. This is how much my hubby loves trees, and perfecting our 10 acre yard with them. I'm looking forward to seeing how beautiful he has made it when Bella and I finally get to go home. 

Bella loves all the excursions we take her on and I'm so elated that she is experiencing life outside hospital walls. 

My Channel • Hospital Mom Hacks

I've finally had some time to add a couple more videos to my YouTube channel! I hope they continue to help hospital parents. If you subscribe to my channel it just means you're "following" my videos and get an update when I add a new video. I think I may start using it to share some exciting videos of Bella's new experiences. This may be easier then bombarding Facebook with videos. 

I am humbled to receive amazing messages from moms and parents I have never met about how my YouTube videos have helped them and people they know.

These are just a couple notes I have received. It makes me feel so thankful that my idea to try this, really fulfilled the purpose I had in mind all along. I'm so happy the videos are helping other families with little ones with medical issues. 

Here's a link to my most recent Hospital Mom Hacks video: 

https://youtu.be/vY_2R7A9Aqs

Bella's Life at 18 Months Old. Day +74

So far we have had just over a week to settle in at the Ronald McDonald House and Bella is doing wonderful. It really only took her 1 day and 1 night to adjust and then she was right back on to her usual schedule/sleep schedule and feeling happy and settled. She is such a good girl and I'm really feeling blessed with how great she really is. I'm also feeling less anxiety when Lyle has to go back to Swift. This weekend the lonely "please don't go, come back" feeling was a bit delayed after he headed out of Calgary. But it still weighs heavy every Sunday when Lyle has to go. It's a little harder to breathe, the lump in my throat hangs out for a while, tears come quickly if anyone were to even say, "hi" to me, within an hour of Lyle leaving. Mind you, I am quite the sap anyway. Regardless, it's going to be heaven when the 3 of us can continually be under one roof at night. 

We had such a good weekend and Bella is having a ball with every little adventure. So she is making it much easier for me to do this while Lyle has to work. 

Day +69

How is Bella? 

In 3 words she is happy, energetic and always smiling! She has adjusted to life at RMH so so well it makes my heart skip a beat. She loves playing with anything and everything and keeps herself quite entertained when I'm busy. The other day she had a good half hour of fun with her jar of headbands. And she insisted that a specific 3 be placed on her head. 

And then she continued to play with all the rest. 

She is walking and crawling all around the room, building her muscles and making a good comeback with her agility. THis doesn't come without a few experimental  tumbles though. She has take'n a few falls quite well and just keeps trucking. She is quite proud of herself when she stands to balance without hanging on to anything! I think the bravery of her first step may come soon. 

Her speaking and words are still growing like wildfire! She talks so much and surprises everyone she meets when they realize her age. Her word that I love the most right now is when she says, Thank You." It comes out sounding like, " Unk-goo" but is so adorable. And I also love that she makes the "k" sound for when she wants a cracker, cookie or cupcake! Our SLP was amazed at her because the "k" sound is supposed to be one of the hardest or last sounds a baby can make. 

Yes, you heard me right! She wants a cracker, cookie or cupcake! Bella is doing amazing with her food tasting and her 'want' for food. I am over the moon about it. For the last solid week she constantly requests food and always has some piece of food in her hand! I'm just as happy as that one day when she took 21 spoonfuls of soup. She is also wanting her sippy-cup. She is not at the stage of really swallowing much yet but sucking on and tasting food all day! It makes me so happy. Her Gtube feeds (tube through her stomach) are going very well. Her bowel motility (she is on a med for this but it has recently been reduced) is wonderful and she can handle half-hour feeds now! She started at 2hr long bolus feeds (back in April) and is now able to handle a feed of formula within 30min. That is a more normal amount of time to eat a meal for anyone and it frees up her time off of her feeding tube way more. 

So because Bella is still on protective isolation I can not take her in any public places. Since the majority of our day is finding fun stuff to do outside I thought if I walk to Tims for breakfast and a coffee, surely someone would be able to go in with my gift card and grab me something. Well, the first person I asked said, "no." I was shocked. I had said I can't bring my daughter in and I have a gift card... He still said no and walked right by me, into the store. It's hard to swallow, knowing people like that are still out there. I constantly feel a heavy heart for the need to be compassionate and hold empathy for anyone else I see in a predicament. Unfortunately... Not everyone is willing to sacrifice a bit of themselves for a stranger. When I think about how I want to raise Bella, I want so so badly to teacher her to hold compassion and have empathy. Anything to keep others from pain. There's enough in this world. 

Fortunately after I stood there in a state of shock a little old lady smoken away on her motorized cart, lightened the mood by pipe'n up from around the corner and said, "What an asshole!"

Haha  Just your typical old lady smoke'n round the corner. We had a good chat about Bella. She was pretty funny. And the next person to come along was a nice lady who had no problem grab'n me some breakfast and brining it out to Bella and I. 

Today +74

Side note: The necklace that we sent to Bella's donor on April 1st was given back to us today. Unfortunately OneMatch did not approve the gift before the 1 year post transplant mark. Apparently they still sent Bella's donor the letter and card, which tells her all about the necklace and every detail of the necklace... But no, did not allow the necklace itself. Ugh... Sad but guess we'll have to wait to give Bella's donor the necklace for a while yet. 

Clinic Visits! Our new chapter.

Day +69 June 2nd, 2015: Bella's first BMT clinic visit. 

So after being discharged from hospital for 4 days I pack up everything we needed in Bella's stroller and we walked over to ACH for her first clinic visit. As I walked up to the hospital and stared, yet again, at it's massive teal colored walls, a new feeling hit me and just promted the words to come out of my mouth, "This is no longer our life." I breathed a big sigh of relief knowing Bella doesn't have to sleep there anymore, nor be confined to a room there any longer. 

We walked into clinic (which is just down the hall from Unit 1) and patiently waited for her nurses, doctors and whole new "Out Patient" team of people to arrive and meet her. Yes, more new people! The only people that stay the same now are her BMT doctors. Everyone else from clinic is new to us. 

So the new dietician came in and checked over Bella's meds, asked me questions, one of which was just like a usual question that she would ask all parents, "Any missed doses Kyla?"  My initial reaction was that of me looking at her like she had 3 heads. Say Whaaaat?! Have you seen my binder lady? No missed doses, this momma is on top of it. We had a good laugh about it. I just couldn't understand how something like a missed dose could be ok. It just didn't occur to me that, uh ya... a stressed out sleep deprived parent can make a mistake or two. Yes, I do need to be told to breathe most days. My brain is just completely focused around Bella's meds and feeds schedule. 

2nd Clinic visit Day +72 with daddy! 

Clinic visits are like a quick check up. They start by taking Bella's blood and sending it to the lab stat to make sure all her levels are good and see if they need to adjust her meds. Then they weigh her, check her pulse and do a whole assessment of her skin, mouth, height, feeding, Blood Pressure, Oxygen, etc. After the doctor checks her over we get to go. Later in the afternoon her BMT nurse Moira calls me with the results of Bella's  bloodwork. So far Bella is still maintaining her own IGG levels so she doesn't need to go in for IVIG boosts. (This would mean siting in clinic hooked up to IV lines for 3 hours.) Her immune system counts are still great and where they should be. Her cells are still 100% donor! So that's real good news. Her next blood tests will show how the new Bcells and Tcells are not just growing but functioning together. It is great that the new donor cells have taken up shop in Bella, they found where to go in her body and start to do what they are supposed to. Now the new baby bone marrow cells are growing and multiplying. The next step (which they see at the 3 months post BMT mark) is how they function/work. 

Day +72

Lyle had the most beautiful idea: spending a day at Spruce Meadows. It was perfect. Bella had a smile on for the entire day. We watched horse jumping and a dog agility show. It was georgeous out and Bella loved every second. 

If the Queen or Dutchess showed up Bella would give them both a run for their money, fashion wise. Bella was ready for the horses in her big hat and fancy frilly outfit. 

Such a perfect day all thanks to my hubby. I would of never thought of it. Especially since I thought for my whole life that Spruce Meadows was in some fancy big city like New York. Haha 

I grew up watching horse jumping on TV, I loved it and never knew it was actually only a province away in Calgary. 

This wonderful day ended with a fun evening for me aswell. Lyle took me to the Imagine Dragons concert.

They put on a sweet show and we got very close to the stage. It was a real awesome lazer light show aswell. Thanks to Lyle's sister Joanna we were able to go while she watched Bella. I tried to make sure Bella was sleeping for Jo because I was worried I'd be leaving Jo with an over-tired crying child. But that was not the case at all. Bella was super happy to see Aunty Jo and stay up later for a fun PJ party and later bedtime. This made it so much easier to go and enjoy the concert. Bella was great for Jo. 

Today +74

My Interview:

The Ronald McDonald House staff have taken notice of my blog and YouTube channel. (Hospital Mom Hacks) So much so that they wanted to interview me about it all and share it on their own RMH blog. This is all in support of Family Centered Care that the House is promoting as well. By sharing my interview, Bella's blog and my channel on their RMH blog, we all hope to help other families in all other Ronald McDonald Houses. I'm so happy that I can help in this way. If you would like to check out the Southern Alberta RMH blog you can go to their home page: ahomeawayfromhome.org  There will be a grey box on the left side of the screen that says, "Come On In." That is the link to the RMH blog. 

Here is a direct link to my interview: 

https://ourrmhblog.wordpress.com/2015/06/04/an-interview-with-the-ronald-mcdonald-house-mom-behind-hospital-mom-hacks/