Wednesday, March 19, 2014

Finally - and a Cait update

I'm finally caught up!! I can't believe I let the blog fail so miserably this year. But I have been spending time these last few months working on it when I have a chance. I use my blog as a type of journal, and I needed this year all caught up. I wanted posts for each event and not just one big catch up. I had been taking pictures this whole time, and jotting down little notes of what happened, so when blogging time rolled around I could remember it. I also finished my Photo a Day project that I started on my Birthday a little over a year ago - check it out here: It was a lot of work, but fun. I'll hopefully do it again someday! I also had big plans to work on a 30 by 30 bucket list. BUT I failed miserably. Nothing was really that hard to accomplish...but with Cait being so sick for the last 2 years I really have not had the chance to focus on ME all that much. But now that she seems to be healthy and thriving (after her most recent surgery in November) I'm trying to find a way to balance some of my dreams with my family life. I still have so much going on in my life, but not having a baby crying at my feet, in my arms or on my hip literally all day will help. I think. We still have a ways to go with her. Having a baby in pain all the time takes it's toll on everyone, and I'll be the first to admit that my parenting has sucked. I haven't given my other girls the attention they needed and most importantly we have let Cait get away with way too much. As it is, she gets what she wants when she wants it. That was hard to control when she was so sick. We would always do anything that would make her happy, because the one thing she really wanted was to not be hurting, and I couldn't stop that! So now that she seems to be ok, we have to start retraining her. Teaching her some limits, maybe patience, sharing?? All things two year olds are great at right?? Haha.

So that's our most recent update, but we still have a long road with Cait's medical life. She still needs to have her kidneys checked regularly to see how they're doing after the damage that's been done. We also have some more testing that'll need to be done which will give us a better indication of exactly how her kidney looks - and how they are functioning as a whole. We have to watch for signs of kidney blockages, which is a very real side effect of the procedures she's had done. We also have to consider the long term affects almost two years of constant antibiotic use has done to her body, as well as Tylenol and Advil. We know she'll likely have problems when she's older and I feel bad for her. BUT we're also very grateful for this hand she's been dealt. Of all the imperfections she could have had with her body, this is one that has been the best for our family to manage. It's a relatively common and well understood illness. Although she had a very extreme case of it, we're still grateful that we could get answers to our questions and a diagnosis so quickly. We're also so grateful that as of right now it looks like we won't have to go in for the ureteral reimplantation surgery. That one we wanted to avoid at all costs. In November when she had her last surgery, we had the option of going that route, or trying the more simple procedure for the third time. I didn't think the simple one would do the trick, but after some good advice from her Urologist, that's the route we went. And I'm so happy we did! Her urologist is truly amazing, as well as her nephrologist and all their staff. Our family doctor was probably one of the main reasons we got answers so quickly, and his after hours phone calls to our family to update us with test results etc definitely went above and beyond what he was expected to do. But he did...and when he moved away and was no longer our doctor,  I can honestly say I had a good long cry! He was such a huge help in all this. Anyway, it's been a tough go, but I recognize there are others who deal with so much more. My prayers are with those families! Everyone has struggles and trials, and I'm just grateful for the ones I have, because I KNOW them, and I can deal with them!

Anwyay, here's Cait playing with the hospital toys, just waiting to go in for her 3rd and hopefully final surgery. She's a champ at the hospital!

1 comment:

Anonymous said...

A wonderful, positive update on Cait. We wish we could have been around more for these past two years to add our support. But our prayers were answered and Cait is doing well. :)
We love her -- and you, and the rest of your darling family.
Love, G-Ma and G-Pa