Those Chimerisms Though! • She's still 100% Donor!

Hiccup 

Well let's start with that little "hiccup" (2 months post discharge from hospital) that we had to deal with last night. Bella's been cut'n some major molars lately, she had a great Wednesday, and may or may not of had lobster touch her garlic toast for supper last night. Whatever it was she got rid of it fast and that's awesome news! But I was quite the mess last night running around like a chicken with its head cut off. I wanted to get her to a doc so fast I didn't even put on shoes to drive her to the hospital. I didn't even realize till I was walking down the hospital hallway in my socks. This was the first time Bella has puked since April! And that was transplant related. 

This was randomness out of the blue and the docs still arn't sure why. After 8pm she had 5 bouts of emisis and after the 2nd one, when I called back again, they said bring her in. No temp, happy and smiling at the doc... Another big puke and slept sound after midnight. She never even got dehydrated but they gave her fluids anyway and some gravol. She did have more poops then normal too. They also set her NPO (not allowed to eat) so she woke up quite hungry this morning. They took blood and stool. The first set of results came back negative for everything they tested. So we'll see what the rest shows in a few days. For now, she's back to her self, she's been eating and happy.

The flood of feelings that came though, as I panicked really was more than I was prepared for. Tears came fast but I was quickly relieved because I know we are still in Calgary, accross the street from the specialists that can see her within minutes. More relief came knowing that she rid'd whatever this was on her own and all I really needed to do was stop her feeds and give her Pedialyte water. All in all this was like a practice hiccup showing me she is going to be just fine when we actually get to go back home to Swift Current.

More Immune Panel Test Results

Bella's Chimerism test results show she is still 100% donor cells!! Yay! This is the best news regarding her growing immune system. Her NK-100% donor, Bcells- 100% and her Tcells-97% (less than 95% they consider mixed donor and recipient) 

So 100% donor cells is so awesome at the 3month post BMT mark. Like I've mentioned in other posts this means a working immune system for Bella and no extra treatments needed to fix a "mixed cell" issue.

Her docs are so happy with her progress they took her next large panel blood work a week early too! (July 21st instead of the 30th) So not as long of a wait for the next check of those Tcells that need to bulk up more (CD3). 

The immune system is made up of a whole bunch of different cells that fight sickness. Bella's Nutraphils are already in fighting mode and she is able to combat any skin infection or fungal, skin bacteria! This came when I asked if we should think of switching from her Peg Gtube (long tube that comes out of her tummy to feed her) to a MkeyGtube (just a button on the tummy for feeds, no long tube). The pEG tube she has now can slide up and down and cause skin irritation at the site and what I thought, could bring on infection. It hasn't, but I worry about it happening. Bella's doc said not to worry bout that for 2 reasons: 1. Her Nutraphils could fight it and not allow skin infection and 2. She's eating so well she could go from PegGtube to no Gtube sooner than we think!! I like those reasons. :)

When it comes to those Tcells that we want bulky enough, it's because those are going to be the big guns that fight the viruses. These guys need to eat their Wheaties and pump iron to fight viral and other major infections like PJP. So they are in the gym right now, bulking up and will come out when they are big and ready. And her doc explained it like this. The number count of these guys is one thing and their function is another. Yes, we wait on numbers from monthly blood panels and they have to hit a certain number for Bella's docs to be ok with her going into possible virus catching scenarios...

But that number will also always be a little "off" while she is on the med cyclosporine. These cell's function won't be at their true best until Bella is off this med for 3-4 months. This will be when she is 2 years and 7months old. (She is currently 19 months old) 

Bella's next big Immune Panel blood work should now happen mid August.

New Feeding/Eating Plan

Before Bella's hiccup last night I was quite excited about the new plan for her eating! We still have it in place but it'll be a bit delayed. The plan is, because Bella is doing so well with her eating her dietician recommended taking off one of her 5 Gtube pump feeds and starting a food diary. So I track what she eats by mouth to essentially count her calories. She may actually be eating enough to take off 2 of her 5 Gtube formula feeds! This is amazing news! This means less time hooked up to a pump to get the calories she needs to grow! 

But now because of last night we arnt going to start this tomorrow like originally planned. I need to slowly get Bella's tummy back to handling what it did before they made her NPO (no food) for 15 hours. But that should be done in the next couple days and I'm going to start tracking her food eating anyway. Our docs/dietician also want to try changing Bella to a more normal formula next week! Right now she's on Neocate Junior. The most broken down formula for a baby's system. It can't get any easier to digest. But this formula is also extremely expensive. I'm praying her bowels allow her to stay off of motility meds and do well with the transition to a more regular formula. 

Current Meds

Bella is still on a lot of medications. Seven to be exact. She has her major one, Cyclosporine. This is the big immune supressent that prevents GVHD. They keep this dose at a certain level so that her new donor cells don't come charging in too fast or too slow, but just right...growing those Tcells at the right pace. 

She is on Ondanzitron to help against the nausea that cyclosporine can bring. 

She also has 3 different profolactic meds on board to prevent any fungal, viral or pneumonia. Vitamin D (like any Canadian kid) and lastly, a med that controls her blood pressure because cyclosporine can cause higher bp as well. They want to be conservative with this bp med as not to strain her heart or cause any hypertension on her heart. 

These awesome photos I've posted lately are the result of my awesome "mom friend" in the house, Amanda, who has spoiled me with her talent. She snapped these while we took the kids for a walk one day.  

Bella's wrist appointment was canceled for the second time. Sadly this issue is on delay because the specialist she needs to see is away because of some serious family issues that need to be dealt with and are keeping her from being able to be at work. Hopefully we'll get to see this specialist for Bella's wrist in August.

Ronald McDonald House PALS Dogs program: 

Bella's bedtime has switched from 7pm to 8pm so now that she's at the house as well, she can enjoy some of the awesome programs they have like bingo and PALS dogs. This sweet pup had the same name! Bella meet Bella. They had a good chat I think...

Come & Visit Us! 

Our friends made our day! :) 

I think many of our friends and family may still be thinking Bella's on strict isolation, but she's not. Her docs have said at this point we can decide who can see her, for sure. We just need to screen you first! But honestly, if it's even for ten minutes, a quick visit makes our day. It also gives Bella and I something to do now that her clinic visits are down to once a week! 

We would love to see more friends and family. She is just not allowed to play with any kids yet. And when we screen you this means that you are obviously not sick, or been around anyone sick or been around anyone with recent vaccines. So by all means come say hi! The weather is nice and we can sit out on the back RMH patio and have a coffee. 

Also, if you're in Swifty, give my mom a big kiss and hug for me. She just had major major knee replacement surgery and of course can not make it to Calgary just yet. I know she's missing her granddaughter big time. I miss you too mom. I love how much relief you bring me when you come to Calgary and help me with Bella. Love you mom. 

Daily Afternoon Randomness 

A tornado graced our presence in Calgary this week. I was legit scared watching from what I hoped was a far enough distance. 

Don't Forget! 

- Get your cheek swab kit from OneMatch and be a registered donor!

- Promote SCID awareness

- check out Bella's Facebook page, "Isabella's Mustard Seed"

- My YouTube channel "Hospital Mom Hacks" has 3 new videos to help with Gtube care and 20 vids total now!

-Keep fit and have fun. :) 

Day +112•No GVHD•Counts Continue to Improve•

Yeeeaah! To continued good news and results. 

Bella's primary doctor (her Immunilogust Dr.Wright) was finally able to come in and go over Bella's 3 month post BMT (Bone Marrow Transplant) Immune Deficiancy Panel Blood work results. We both did the 'Target Lady' cheer through the whole conversation. 

When summarized in simple form these numbers tell us what Bella's immune system is doing. It is growing, and progressing very nicely. The numbes of the Tcells (fighter cells to fight infection) are growing and gaining. In short, Bella's doctors base decisions on these numbers when blood work is done. That's the waiting game. Decisions are made when the numbers are high enough.

Current Time Line based on Bella's Numbers: 

1. Currently keep on same isolation protocol until CD3 (Marker on the Tcells that fight infections) numbers are higher. 

2. July 30th check counts again (Tcell numbers/CD3) and adjust isolation protocol. 

3. When counts are high enough. Test Bella off isolation in Calgary. 

4. After that, discuss going home. 

 

So we are really waiting on those numbers from the CD3 markers on her Tcells that when they are high enough, say, "Ok... We are ready to take on the common cold!" Until those numbers are high enough, Bella's docs won't risk her getting sick yet. But soon there will come a time when we'll have to take that plunge and watch her new immune system do what she needs it to do, and fight off the common cold effectively. Dr. Lewis laughed and said, "This doesn't mean going to any Chicken Pox parties!"  We laughed pretty hard cause honestly... who does that?!?!

The CD3 marks the cells that take longer to bulk up. These are the ones that learn to build from stem cells and travel to the thymus, and learn what to do there, then go out into the body doing their job. It's a longer wait for these important cells to be come "adult" cells and bulk up enough to fight infection properly. 

I think the happiest part through these discussions yesterday was how extremely happy her doctors are with the fact Bella has not got GVHD (Graft vs Host Disease- which can severely effect skin, liver and gut) It can be serious and a horrible complication with many Bone Marrow Transplants. It is a miracle to rejoice for, that GVHD has not affected Bella. It is so common. I see so many parents with little ones, and from what I have seen, it's like every kid has got it in some way... But not Bella. Thank you Lord. 

And it won't be an issue for Bella. Her docs have said at this point, this far from transplant there is no longer a concern. Bella is a rare case that has proven GVHD does not have to be an issue when a BMT goes well. I hope that other SCID and BMT patients read this and feel relief. Bella's case, protocol, chemo regiment, was all new to her doctors, a lot of first time ground breaking decisions and they have proven successful. 

**Target Lady Cheer**

Why isn't Bella like every other BMT case and starting over the same way at Day Zero? 

Question Answered: 

I finally was able to get this answered by Bella's BMT doc and clarified. 

1. Her Protocol is NEW and her case is still at lot of learning for her doctors. 

2. Her difference is also in the recovery of her immune system because of the different meds used in Bella's regiment. 

~ We can not compare Bella's SCID case to any cancer case because all the medications and chemo regiment before, and the meds after BMT are very different. After BMT they are carefully rebuilding Bella an immune system. Not fighting a cancer virus. Her doc said it is even quite difficult to compare 2 cancer patients. After Day Zero different bodies recovery differently. Not every patient has the same isolation after a transplant.

Another good sign! 

Over the weekend Bella was cutting some nasty molars. Teething was very hard on her body and come Monday I noticed lymph nodes (bumps) on the back of her head, symmetrical, behind the centre of both her ears. 

Side note: Lymph-nodes enlarge when the body is fighting something. I also detected the lymph-nodes that first involved Dr.Wright discovering Bella had SCID. Bella had a biopsy of the armpit lymphnode I alerted the docs about, back in Novemeber, that proved she had SCID. So technically I made the discovery, that lead to the doctors discovery of Bella having SCID.

Back to my story...

Bella's docs confirmed this is a good sign! It shows her new immune system is already doing its job correctly. The lymphnodes are just slightly enlarged and symmetrical, and happening during these major teething bouts. That's exactly what her new immune system should do. Yay Baby Immune System! If its doing this good at the "baby stage" of growth, it's going to work wonders for Bella when it's fully recovered. 

In Clinic Today for 3 hours: 

So that wasn't fun being stuck in the clinic room for 3 hours today, but Bella did great. 

So here's why we were there:

On our way to 3hr clinic visit 

Bella's Immunologist wants her to still receive IVIG as a boost, she doesn't need it. This is a booster for her immune system. It's a blood product that goes into her via her central line for 2 hours.

She never received her monthly boost for May or June because her IGG level (her body maintaining its own level) was always above 5. Even now it's at 10.2, well above normal range. So her BMT docs said she doesn't need IVIG. She still doesn't need it, but her Immunologist still wants her to receive the monthly boosts at this point. 

We were enjoying our short clinic visits before today. But that's ok, they will continue to be less and less. Her BMT team decided they only need to see her once every 2 weeks now! She still has blood work twice a week though. 

The pumps, lines and hospital crib brought back some memories, but Bella did great for the 3 hours we had to be there. 

Bella's Classic Golf Event

Lyle tells me the event was a success. We are so thankful for all the support and for my dad organizing this whole event. The weather was great and so many friends and family enjoyed the day for Bella. Thank you all again. 

Genetics Update • Our Family Future

Numbers say lot. We hear about a rare form of this, a 1 in a billion chance to be born with that, or 1 in 50 000 are affected by this...

I think the opposite way now. How rare, to me, is it to have everything come together and a perfectly healthy baby is born. For me now... It's a heartaching reality. 

Our wonderful Genetisist here in Calgary has got Lyle and I in touch with the Regional Fertility Program that involves Pre Genetic Diagnosis and IVF (Invetro Fertilization) aka: Our only chance (with our odds) at having a healthy baby not affected by SCID (Sevre Combined Immune Deficiency) 

Now that we have had Bella, and all the genetic testing has been done on her and us, we know there is a 1 in 4 chance our next child could have SCID, if we were to conceive naturally and just risk it. Not an option. We would not, could not do that to Bella once we finally get her home... Risk another long term hospital stay with our next baby. Aside from everything else that comes with being born with SCID...nope.

Our only option is to hopefully use this program in Alberta to help us for when we want to have another baby and ensure it is healthy, and not have to endure the pain our sweet Bella has. Lyle and I are excited to have an option! This means we do have a chance at growing our family! Some people don't even get that and that's an even larger heart break. But we are not excited about the costs. 

We still have a lot to learn about this option. The emotional toll, expense, another medical need that or province can't provide us, travel, procedures, time.

We have our first meeting and testing come August 20th. 

Wait, Wait Some More...Wait! Are You Waiting?

That about sums up what we know, so please don't ask me when we are going home. That question has come up a lot lately since Bella's day +100, and it is painful for me to try and answer. They told us from the start, Home would be 6-9months POST transplant (March 25th,2015). So that puts us at the earliest (keep in mind these are estimates because Bella's a "First of a kind" case to them) Home-time being September. 

I think because there's a bit of miss-conception between the +100 day hype, oncology patient's BMT vs SCID patient's BMT and 100 days being a bit anticlimactic. Bella's +100 day is blood work that tells us how her Tcells and Bcells are functioning because hers never did anything when she was born. I'll ask our Immunologist next week if there's a better way to explain these differences in terms of Bella's special case. 

So we wait, and wait some more because our Immunologist had to be with a super sick little kiddo Friday and was unable to discuss Bella's large Immune Panel blood test results. Hopefully I'll have more details Tuesday. 

However I did get a chance to have a large conversation with Bella's BMT doc on Tuesday last week and he did a good job of summarizing what we know so far. We both had a good laugh because through this whole process we both know Bella's Immunologist (Dr.Wright) does a way better job of this. 

What We Know: Day +108:

- All good news, no bad news. Bella is right on track with her growing new immune system and they are very happy with her progress, still.

- She has an immune system! Wait... Let that sink in, she's never had one before remember. An immune system that is donor in origin. Meaning 100% donor cells, meaning no rejection aka: the BMT worked, but her immune system is not fully recovered yet. 

- Because her cells still show 100% donor that means they are functioning, they just haven't hit the numbers yet that the docs say would allow them to feel more comfortable in changing her isolation/protection protocol. 

So we continue to screen visitors, no playing with any kids, no sick people  near her. 

The RMH has allowed me to write a helpful blurb in the weekly newsletter so the other families in the house understand why I may bat their hands away if they get too close. Haha. Yes, even with my signs I've had to do that a couple times. So hopefully this newsletter note helps. 

- Bella's Tcells (fighter cells) number are still too low to "test them" against bugs or your common cold. They need more time to bulk up, but we'll get there. 

- Dr.Lewis reminded me that it is great that Bella's new cells show 100% donor. We want them to stay that way as they grow and bulk up in numbers,  but they could end up mixing. Mixing as in Tcells could be donor and Bcells could be Bella. We don't want this, but it is manageable if it happens. We have clues right now that continue to say that the cells are functioning well as 100% donor because Bella has not needed any IVIG (immune function boosts) because she's maintaining her own IGG (body's immune function) level above 5. Bella's currently maintaining at 9! 

- Bella has shown no sign of acute GVHD (Graft vs Host Disease) or any at all! This is so so good. Graft being donor cells and Bella being the host. Another example of cells mixing and things going wrong with her body. Another clue hat her Tcells and Bcells are functioning together as 100% donor, still. She's 100% graft. I'll have this confirmed next week when her chimerism tests results are back. So praying she continues to stay this route of 100% donor cells as they learn to grow and function in her body developing a new working immune system. 

- Dr Lewis also reminded me that Bella's team of specialist are in a new territory of decision making based on her case and counts. A lot of their decisions are first time decisions, so she's breaking ground for future SCID cases that come to ACH. He also added out the the 4 they have seen, Bella is the first to be discharged this early after transplant. Proving they are confident with her recovery. :)

Bella passed her overnight Oximetry Test this week! She is officially off all Oxygen requirements. She does not have to wear O2 prongs at night or need that quarter letre any longer. She scored a 96% which is well in the normal range. This proving her lungs have recovered from the hits they took before her BMT. Before discharged from hospital her score from this test was 93%. That was ok but still not high enough for them to make her lungs do all the work just yet. The O2 is quite low as a therapitic dose but her lungs still needed it, and her stats at the time showed it. Now her stats show her lungs are even better. This is also really remarkable seeing as Bella has a smaller lung capacity in general and she's recovering from forms of chronic lung disease that caused pulmonary hypertension. Glad that is all behind her now. Her lungs may be small but they are mighty. 

I think I can finally say that Bella is starting to understand what 'Hunger' feels like and how eating solves that problem. I think this because she's getting quite demanding at the appropriate times now, the times that make sense for when she should be hungry. It's all a huge blessing. She's progressing so well, so fast, I can barely keep up. 

The Past Week: 

Bella's building quite the celebrity status. 

I've recently had 3 interviews with 3 different stations, regarding Bella. The links are on Bella's Facebook Page: "Isabella's Mustard Seed." We were on Global Calgary as a family representing the Ronald McDonald House and what it means to us, Golden West Radio in Swift Current for the Bella Classic golf event, and Shaw SC added Bella's Classic to the event calendar as well. We have been overwhelmed with the support for Bella and their time in sharing her medical story. 

Seeing as Bella's favourite animal is the cow, it was nice that she finally got to attend her first rodeo at Calgary Stampede! We were given amazing seats directly over the bull shoots, by RMH. It was nice that we could use Bella's cover to get her there and then our seats were quite secluded and not right beside anyone else. She loved the whole rodeo show. 

Edie 

Aka: Our Second Mom and our First Ronald McDonald House.

We still keep in touch with Lyle's aunt Edie. She is one amazing woman. We love you mom! :) 

Don't cry. Haha

Edie took us in through the gruesome first part of Bella's stay in hospital, the first 7 months in Saskatoon's RUH. She saw us with Bella at her worst, cried with us, fed us, housed us, we were her kids. We will cherish every uplifting moment she gave us. And we can't wait to get back for a visit for Bella's first haircut! 

Edie is an amazing hair stylist that throughout taking us under her wing, also ran her own business out of her home. And then still made delicious home cooked meals for us every night! Edie and I text and email to keep in touch. She has helped Lyle and I develope our yard, back home. When you see a beautiful kept yard like Edie's, you take note. 

Aunt Edie's beautiful yard this July compared to March. She does an amazing job. 

Lyles hard work on our front yard finally complete, with the help from our second mom, aunt Edie. We love you so much, thank you.

Busy Bella

So I'm quite the sap lately, texting Lyle in tears because Bella won't let me rock her to sleep any more for naps or bed times. Ya, she's a big girl now. And I'm a sad mommy. I loved those moments of her cuddling in my arms, loving it, resting. I cherished the fact that though she's a bit tinier I get to do this a lot longer then most parents. 

Well... I think its over now. For the past week, she won't let me hold her before bedtime. Nope, it's like, "Come Oooon mom, quit touching me...put me down!" And as soon as I do, boom, she's asleep. And then theres me... sobbing like the sappy sap I am in the corner. 

I'll get over it. I'm thankful she is such a good sleeper and now, she doesn't even need my help. Such a big girl. 

She also has come to understand kisses and hugs now, so I get lots of those now to make up for no pre-bed time snuggles.

I still can't keep up with all Bella's words and sounds and signs! More everyday. :) She is "Hulking Out" less with her "rage shake face." It's kinda funny when she does it because she is trying to get out a toy that is stuck. Now she remembers the sign for help and shows me that with a "Hhh" sound. Or she points and says, "dat!" As in, "I want that."  She's also pointing out horses now and cats! Her "meows" and "neighs"are pretty cute. 

 Mommy Momment 

I usually scroll by the hundreds of articles that come across my Facebook feed. Just no time to read or listen to other people's first world problems. However, something in the title of this one caught my eye. I read it and have never felt more like someone is talking about me, ever. I don't usually talk about what I am going through, I don't want to make Bella's blog a sob story about me. I'm a tough girl, push through a lot of BS stress and get on with my day. I also have amazing friends here that help me cope. 

But if you want a glimps into what I think and feel on a daily basis, this read does a spot on job of that. Please know it means a lot to me if you take the time to read this one through. 

Here's the link:

http://ofgritandgrace.com/2015/07/08/to-the-mom-stressed-and-worried-about-her-childs-health/ 

Bella's Classic Tomorrow! 

Bella and Grandpa 

If you have 'liked' and followed Bella's Facebook Page 'Isabella's Mustard Seed' you'll know that her grandpa (my dad) has prepared a huge golf event, Bella's Classic, and the festivities take place tomorrow on Piddle Creek golf course in Swift Current. 

The hard work and support my dad is bringing to his granddaughter is out of this world for a 'supposed to be retired' grandpa. 

I've explained a bit in the update on Bella's GoFundMe page http://www.gofundme.com/BringBabyBellaHome 

about what this support means to Lyle and I. It helps with so much: Bella's expensive specialized formula, Gtube supplies, Gtube care supplies, Broviak central line (in her chest) care supplies, heparin, sterilized supplies, her 7 different medications and of course the travel Lyle does so he can see his baby girl as she grows up. 

I was having a cry-fest (again) on the phone with Lyle the other day because I was sad about missing our dog Jersey and that I am missing 2 years with my fur baby, and missing her so much. And Lyle stops me and says, "Like me with Bella honey." Of course that didn't help stop my cry-fest. A father who is forced to see his baby girl go through a year of termiol and on top of it have to miss most of the first 2 years of her life. It breaks my heart. The more chances Lyle has to tavel to Calgary, the more chances we get to be a family together. 

I am thankful for Country Music Radio sharing Bella's story, and the info about the Bella Classic. They did a wonderful job getting this info out to our home town of Swift Current. Here's the link to look at it all:

http://www.swiftcurrentonline.com/index.php?option=com_content&view=article&id=30618%3Ahave-you-met-bella&catid=48%3Ackswcjsn-blog&Itemid=460 

 

If you are out there somewhere enjoying this beautiful hot summer, cheers to another healthy, successful week of Bella's recovery post BMT. 

We'll hopefully be right there beside you next summer, cheers-ing ourself to it all being over, and the fun beginning! 

DAY +100 • A Day in Pictures

100 Days

from chemo

from,"She might not make it."

from March 25

from her BMT

from her only cure

100 More

of strength and growth

of weaning meds

of crawling to walking

of fun at RMH

of eating!

100 After That

to finally move home

to see many more birthdays

to love her dog

to see her whole family 

to show the world she's fierce. 

Day +100

There has been lots of talk about this day from the beginning of Bella's BMT process, its a big milestone day. The biggest after her Day Zero (The day she got her BMT)

Today is essentially the 3 month mark post transplant. When we receive her Immune Deficiancy Panel bloodwork next week, it's the first real point where they can tell us how well her Tcells and Bcells are working together. Aka: How well her new immune system is functioning. 

Her BMT team still warns us that we should not get too excited, they still may need more time to see what they want, and that can be fine. But there are some pretty big clues that they'll see what they want out of this 100 day blood work. Some of those being that Bella has had no infections or sickness, no signs of acute GVHD or any GVHD at all, and she is maintaining her own IGG (antibodies) levels! 

Today is also a day to celebrate the fact that Bella's med schedule changes for the better too! She has less meds (from 8 down to 7) and less doses of those meds. So instead of having to give her meds at: 7am, 8, 11, 1pm, 5,7 and 8pm. I now only have meds to give at 7am and 7pm...8am and 8pm. Cheers to a much more manageable med schedule!

Bella's Day 100 bloodwork will set the rules for her next type of isolation or protection. Her meds are at a great balance right now but still causing her to be immune Supressed. This means depending on how her new cells are doing, they still adjust her meds so they don't come on too strong or too weak and cause GVHD. So the current balance of meds is great, but are still the reason she needs to be protected. If her new immune system is not quite at full functioning level, and we take her off supporting meds, and she gets a cold or infection it could be too much too fast. So she's still on a balance of profolactic meds and immune suppressent meds. 

Bowel Victory! 

Bella is officially off all bowel motility meds! For the first time since she was born, Bella has not required any meds to help her bowels work. They are fully functioning on their own... Absorbing nutrients, moving her formula meals through and she's pooping normally! No diareah, bloating or frequent stooling. I might be slightly more excited about this than her Day +100. Ha ha. 

A Day In Pictures • Day +100 • July 3rd

Bella's still sleeping as I prepare her morning meds at 7am. 

8am, Just woke up, mommy kisses and snuggles. 

Big smiles watching morning cartoons.

"Don't even think about touching my breakfast!" Nom Nom.

Dressed and ready for the day.

Off to clinic for bloodwork at 9am.

Having a snack and sitting nice and still as the nurse takes her blood. Prayer: "Thank God for a clean, and good working double lumin Broviak line for the rest of the time she needs it." Which will be months, they'll be doing blood work for many more months. 

Her fashionable soother clip to kick off Stampede, which starts today in Calgary.

After her nap Bella was invited to visit the Magic Room in the Ronald McDonald  House. The amazing, generous staff knew this was definitely a day to celebrate so Bella got to pick out a toy! She was so excited. 

I may have been a bit excited too. :)  Bella got this beautiful big Klip Klop horse and princess palace. It's was quite the beast to set up but she loves it. She plays so much with the Little People sets. She puts them in their chairs, moves them around their houses or puts them in the horse's saddles and moves them around. It's so cool to watch her play and use her toys like this. 

While Bella was nap'n I made cupcakes for the house and of course one for her to smash. 

So I'm realizing she's not much of a "sweets" eater. In the pics she rather eat her veggie crisps or the apple. Ha ha. She barely touched the cupcake. She did the same at supper last night. She had bites of chicken and veggie rice, but didn't want any icecream. 

We had some fun in the Craft Room with stickers. 

After a bedtime bath, Bella played for a while with her new Princess/Horse palace. 

Happy Day +100 Lovebug

Mommy and Daddy love you 100 times more then there are stars in the sky. 

Xoxo