I haven’t update on Bailynn in a while. I have made the decision to move Bailynn’s journal onto here, my blog. I haven’t really been using my blog and sharing Bailynn with the world – well, it seems right. So please “follow me” on here for Bailynn’s latest update and other fun things about the girls, Bob, and I. I archived all of Bailynn’s old caring bridge posts and they are in chronological order starting in July of 2008. Crazy. I have even started making a gallery of my drawings from Drawquest and SketchClub. I am going to add the girls too (It does take a bit of time to do so).

So, on to Bailynn.

We went to Cincinnati last week for a visit and a scan of her brain and kidneys. Her brain looks “stable”. Basically the report states that there are a lot of visible tubers in her brain, she has enlarged blood vessels in her brain, and that there is visible calcification from brain resection surgery (aka removing most of the left side of her brain 14 years ago). Bob and I really didn’t care so much about this brain scan. Honestly, at this point, what would we do. We love Bailynn for who she is and what she CAN do. If there was, by chance, a huge tuber in her brain, at what cost would surgery pose. To me there is no value. I can’t take the little she can do away. So – don’t care…. silly doctors. Anyway, if there were brain issues at this point, her seizures would have changed or worsened and her demeanor would have been altered.

Her kidneys remain our main concern. We arrived at Cin. and there was no order for a kidney scan. The amazing radiology nurse took care of that. She called up to the Tuberous Sclerosis Clinic and got the orders. I had called for months trying to get the scan scheduled and one call she had it done! We were so thankful.
The scan showed a small decrease in the size of the largest angiomylipoma in her left kidney. Small. Small small. However, it is not bigger. So months of meds with vomiting blood, mouth sores galore, med changes, hip dislocation, and seemingly endless screaming/crying, it is smaller.

{The scan also states that there are visible tubers in her liver – many. }

This is honestly good for me, smaller is better, but let me tell that someone called me before I saw the results of the scan online. A nurse I assume. Doom and gloom were the topic – per the norm. She went on and on about how Bailynn needs another immobilization of the large angiomylipoma. They think Riley did it wrong in October of 2011. I don’t believe that is the case. (This STUPID tuber is swallowing up Bai’s kidney and has since she was small….it seemly can’t be stopped (other than the medications ability to keep it at bay a bit)).
I AM SICK OF SURGERY!!! I AM SICK OF PEOPLE WANTING TO CUT ON BAILYNN!!! I told Bob that I would let them do the immobilization on one ground…they would have to pay Bailynn to have it done! A lot. The last time we had this procedure done, it was 88K. We paid a good chunk of that 88K and even had to take out a personal loan to deal with Riley’s love to send people to creditors. It took years to pay off and IT DIDN’T WORK!! IT DIDN’T STOP IT! My anger and tears bubbled on the phone with this woman telling me this was the only option (again, before seeing report that clearly states that it is SMALLER!) Rant done..promise. I’d like for once, just once, a phone call from a doctor to be positive. I’d like them to know that I’ve had to think about what I would do if she dies. What her funeral would be like. I’ve had to plan on misery and sadness. I’d like some hope for once from these people. The meds did make the silly thing shrink – give me hope in that. Tell me her kidneys are going to shut down and I’m not going to watch her die long and slow. I can’t. I don’t want to. Tell me it can be fixed. Tell me she can be helped. (sometimes even if it may not be 100% true) Hope.

I’ve told many people that above all, I want her to have peace. I want swiftness and pain-free for her. I don’t think that is too much to ask. Then I look at my seemingly perfect little girl, shaking her rattle, watching her movies, and I tell myself to not dwell on the future. Today I have her and every day she smiles and blows spit-filled raspberries, is a good day. For the girl who would never see 13…WORLD, She’s going to be 15! Bailynn will be 15 next month.  I do sometimes feel that we live on borrowed time – by God’s grace borrowed time.  We are taking her to Disney for her Big Day. We will celebrate everyday we get…every precious beautiful day.

Thanks for making this move with me and feel free to share Bailynn’s journey with others. There is a sign that hangs above Bailynn’s bed. It reads, “One Day I Will Change the World.” In may opinion, She already has.

As Always, For Her.
Bobbi

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