Day +134 Post BMT • Lots Go'n On

~ Day +132 Tuesday morning cartoons with mommy ~

Medical Updates

1. Bella's Immune Recon Panel blood work from July 21st is still pending. So we should hear about her chimerisms, CD3s, virus fighting Tcells soon. 

From our clinic visit on the 28th her BMT doc has said he is so very happy with Bella's immune system numbers. They continue to remain stable and go up. This means her new immune system is growing and there are no complications. The best news we can can continue to receive. 

2. What we are waiting on. Well, Bella's immunologist (Dr. Wright) calls the shots in terms of when we get to go home. She's been away for a bit and when she returns this week we will discuss more of what the Swift Current home care medical team needs to know and have in order for us to bring Bella home comfortably and safely. We need to know if they can draw blood from Bella's Central Line, wether or not she even goes home with a central line or if it comes out before (which is a surgery), if we do blood work in Swift Current or Medicine Hat. Do we travel for bloodwork? Lots needs to be organized, but that's why we are starting to think about it now. Preparing for home-time is now, actual home time date... We won't know for a bit yet.  

3. This is Cool - Bella's blood type has officially changed from her original O to now (the donor's) B! It's like straight out of a CSI episode. Only Bella hasn't committed any chrimes that she could now get away with. Lol. So for the rest of her life, ACH (children's hospital) will report Bella as her original blood type O. Her docs don't like this, but that's the way they report for all paperwork because some kids have multiple transplants. (Bone marrow transplants) But outside ACH and for any future transfusions she may need they'll know she needs to have B blood. 

4. Some more numbers - From the last blood work report Bella's big fighter Tcells are at a number of 300. This is real good, above 200 is great. At the moment I forget the number they want her at to be able to "test" them around sick kids or people. But they continue to go up and we'll hopefully see them even higher at the next appointment. Her Lymphocytes are at 700 and are going up as well. We want them at 2000 to be fully operational and anything above 1000 is great and they are getting there. 

~ A McHappy Smile for you all ~

5. Clinic visits ~ So a few weeks ago Bella's blood work has been stable enough that they can schedule bloodwork further apart. So once every 2 weeks instead of once per week. This is great and it means we are getting closer to a home date. But isn't it sad that I look forward to clinic... I do. As much as there is to do in Calgary with Bella now, I don't mind having something to do in the morning, friendly faces to see, talk with her dietician about her progress and eating. It's nice. But less info will come less often on this blog now that bloodwork is not once a week. And her major immune panels are still just once per month. 

We have been in clinic more lately for med levels and fluid levels for Bella. They want to constantly track and balance her levels which in part has brought us to clinic 3 times this week. But I don't mind anymore. 

Eating News!

Bella has 2 huge progressions to announce with her eating: First she's transitioning to a new formula and second she has gone down from 5 Gtube Pump Feeds in a day, to 3!!

~ Bella eating lasagna noodles and garlic toast!

Bella has been on Neocate formula forever. This is the most broken down easy to digest formula that there is. Now that she is past ALL her bowel issues she can move forward to a more normal formula. So we are working on that transition slowly as to not rock the boat and so far she has had no problems. She is now at a 50/50 formula mix of Neocate and Nutren. Nutren is a more normal formula that I can buy anywhere and not have to specially order like a medication. 

Because Bella is eating solid foods more and more she doesn't need all the calories from 5 Gtube Feeds (when formula is pumped into her stomach via her Gtube). This means she no longer needs a night feed (running a pump feed of formula at night) that is officially done. And when she wakes up in the morning, she eats enough breakfast that she does not require an 8am pump feed anymore. She usually loves a yogurt/wheat cereal mix that I make and eats the whole thing plus some rice cookies. 

She still loves snacking through out the day but needs to receive a pump feed at noon, 2pm and supper. If I refrain from allowing her snacks after 3pm she usually eats a real good supper. So that may be the next pump feed we get to knock off the list!  

This is so exciting! I love that I'm beginning to forget the days where I thought she may not eat by mouth for a long time. It was a dark scary feeling that I am happy to say is gone from our lives. Bella is still working on drinking. She's doing pretty good with her one sippy cup but she prefers eating over drinking.

Hiccups 

Bella had another hiccup this past Sunday evening. So her excellent eating skills have taken a tiny hit, but she'll get back to it. She did not sleep at all Sunday night and went through a painful night of teething. For the last couple weeks she's had huge bulging bumps on either side of her bottom row and now those two molars have completely cut through showing their purely white. But like any teething event Bella has, it brings on slight fever, diahrea, sore bum, sore mouth and pain cries... I wish so bad I had someone from the beginning just telling me,"Kyla, it's just her teeth, it's just her teeth, nothing else." 

Apart from the episode on the 22nd when I ran her to the hospital in my socks... We got through this teething episode without having to be admitted to the hospital...we'll sort of. 

First of all I didn't know the amazing wonderful fast action of Advil. So Lyle And I pushed through Sunday night trying to sooth Bella in any way we could. The only hour she slept was at 3am when Lyle walked her to the duck pond and back...twice. She was so restless and cried in pain all night. We tried Tylenol twice and it didn't do anything. So by Monday morning when she still hasn't  slept I randomly tried filling a syringe with apple juice, freezing it and letting her suck and naw on it. This worked so well. Then! I thought of putting a cold bottle of apple juice to freeze and see if that would help. I know a bottle is a backwards step but holy moly, she drank 2 bottles of it!! Nawing on the longer bottle nipple, and being able to suck the cold juice really helped. But at that point it had been 15hrs and she still hadnt slept and was in pain. So I finally called the doctor. He said because her platelets were at a stable number, we could try Advil. 

So Lyle ran to the store and when we finally gave her a dose... Wow, knocked her out in seconds. So we jumped on the chance of an over due central line dressing change which she slept through, seeing as she was out for the count and she finally could rest, pain free. Thank you Advil. 

So Tuesday morning they took Bella's bloodwork and found the events of Sunday/Monday (3 pukes and diahrea) dehydrated her enough that we needed to be admitted for a bolus of fluids. Her kidney numbers were bad and me giving her Pedialyte through her Gtube was not enough. So they admitted us to Unit 1 for a couple hours to run fluids through her central line.  Her bloodwork after that showed the bolus brought her back to normal right away. But they want to double check again tomorrow to make sure she is stable going into the weekend. 

We Celebrated!

Sat. Aug.1st 2015 • Bella's Day +129

Wedding Day August 1st, 2009. 

This past August long weekend hubby and I celebrated 6 years together. To be able to celebrate in the exciting box seats at a Stamps football game with Bella was so cool! Thanks to the Ronald McDonald house for this and the donor that gave up these seats for us to enjoy. Bella got a lot of ooohs and awwws. They don't usually see 1 year olds up in those seats. She played so well and enjoyed the attention. 

On Sunday Lyle and I wanted to continue the fun wknd with a road trip, anywhere... just wake up and drive, so we did. Bella travels so well in the car. We ventured to Canmore, AB (which was my favourite part of the day) and the weather was beautiful. Just walking through the town's trails, boardwalks over the marsh, trails by the river and through town was so relaxing. Bella received SO many compliments. I was beside my self with how many people told me how adorable and beautiful she was. I told Lyle, "There is lots of cute babies, why are so many people cooing over her?" And he said, "I guess she's EXTRA cute." Ha ha. It seriously was an odd amount of compliments, but she ate it up like a ham. 

~ One of the walking trails right in Canmore ~

We also ventured to Johnston Canyon and Banff as well that day. It was such a beautiful drive and breath taking views on the hiking trails. 

Physio Update: 

Basically we don't really need physio. Ha ha yay! Not to say Bella's physio coach will stop seeing her but we are on an "as needed" schedule right now. Bella is right on par with her physical strength and development given the 6 setbacks of 5 surgeries and a BMT. It's so nice to have physio see her, observe her and tell me that she is physically further advanced then they would expect given what she's been through.  We know she's not walking on her own yet (at 20 months old) but she'll get there. She's really picking up pace on her balance, catching herself when she falls now and walking with the support of just one hand now! She doesn't get a lot of obstacle experience in our tiny room but we make do. She is climbing over large physio rolls and big stuffed animals. We found some stairs to try the other day and she did so well climbing them! She had never seen stairs before, but knew what to do. Her physio coach gave me more ideas for our room. I can try to place large text books to mimic stairs for her to practice her step up. And because she's getting taller now I do need a higher play table for her, so that's exciting. 

Giving A Gift

I have never been more excited to give a gift. This is a picture of a gift I put together for a friend of mine in Calgary who's little one was diagnosed with SCID in May and receives his Bone Marrow Transplant (just like Bella) tomorrow! 

I can't explain the happiness it brings me to meet a friend like this and to help her through knowing we have so much connected through our little 1 year olds. 

To know what she has to go through is something only I will know. When the impact of that hit me, I just wanted to bring her relief in the best way possible. I never had the rare chance at knowing someone in very similar circumstances during Bella's Transplant. This opportunity is extremely rare. So I thought about that week I had with Bella... The last day of chemo, the day of rest and then Day Zero. And I thought what did I really need that day, what helped Bella and I get through those days. It brought me so much joy knowing  exactly what could help. 

SCID is so rare, so just the chance at us being able to meet, and get to know each other from my experience and what her little guy is about to go through, is priceless. 

So I found some real cool things that I wish I knew about while Bella was admitted in hospital. 

These WTF notepads are hilarious. I think any nurse or doc would get a kick out of being handed one of these. It could make a real heavy issue a lot lighter. I would of loved to hand these out to some of Bella's old medical staff after some of the minor mistakes that were made. Or just have a pile ready to hand out at Rounds in the morning when we would meet with all her doctors. I know all you medical/ hospital moms are laughing so hard right now at how awesome this idea is. 

Sticky notes, notepads and labels were a must for me. I would get to the point where I would literally tell people I could not put sentences together that day... I was so stressed at times that I could not speak, so I wrote. And that's just all I could do. 

My artsy fartsy side came out making this gift for my friend and her son.

I want to share my ideas because I think it's valuable to really know what parents need in times of high stress and agony. I think the fact that I found a friend who is about to go through exactly what I went through with Bella is a happen stance that you can not miss the ball on. It's so completely rare. I didn't want to miss the chance at helping in the only way a person of similar circumstances could. 

More Thank Yous in Order

Lyle and I continue to be overwhelmed with the way so many of you (friends, family, friends of friends, people we haven't met) support us. With all that you do for Bella and what you give to us helps immensely. Whether it's a happy meme text, message, a card you mailed, a gift, money, a phone call, coffee visit, quick hello... We cherish every one. Thank You. I wish I could just teleport a Thank You card at that instant. 

Please Remember: 

• Be a Bone Marrow donor

• Try to support any Ronald Mcdonald House that you can. 

• Follow Bella's Facebook Page "Isabella's Mustard Seed"

• Support Saskatchewan with starting SCID screening for our newborns. This needs to happen. 

• Be kind to one another.