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.
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.
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.
Physio
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.
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.
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:
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! :)
Wonderful!
ReplyDelete