Just RK

Some late breaking news! From an email I sent just now…. I just thought I'd share that Braska's button came out tonight, and after some very quick discussions, nervous glances, and shrugs, along with a call to the nutritionist, we decided to leave it out.  Be done. Move on. Call it good and keep on walking.  And I'm a little anxious, I admit. More details over there at her place … Wow. *That* day really is here.

Since I’m not in the right frame of mind for writing the things I just SWORE I would get covered this month, I’m going to refer you to a couple other things to check out. ~Keep on Spinning had a very interesting post recently… Prenatal Test for Depression .  I thought it was an intriguing perspective.  Glass half full kind of thing.  What are your thoughts? (Respectful, please, of course.) ~ Kellsey is having surgery Tuesday morning to join the g-tube club. Please pray for a successful and smooth procedure. Even though we’re on the way out (finally!!!), we are definitely big fans of the little device I first put off for months after it was first recommended.  It made me go back and look at the beginning of our journey with Braska’s “second belly button.”  And man was she cute back then!   There was the first procedure , some follow up , the report by B 1 and 2 , and then the conversion to the button from the tube. The first picture of the ne...

One week ago yesterday, Braska had her last tube feeding. I thought we were going to have to change that yesterday, as she really wasn’t in the mood to be drinking. I’ve said before, and it’s not overstated, that to make her mouth, tongue, throat, and all the incorporated muscles of lesser known names work together and allow for her to take fluid in and swallow it properly is a lot of work for her. It does not come naturally. It is not a reflex. She does not “just get it” now, she is working hard to get it. Very hard. At times, when she’s holding a mouthful of milk, just sitting there, waiting for me to take the sippy cup away, her eyes will go from side to side, her neck twitches and moves, her jaw slides from side to side or clenches a bit. It’s all like a bit of quiet chaos as she tries to organize everything in order to get that swallow done right, without choking, and allow more drink to come in. It’s a very slow process. Don’t think that she’s just up and guzzling do...

If you’re one of the few who check in here but not over on Braska’s blog , be sure to pop over there and read the last few posts about our big, exciting changes.  She’s rocking a cup. Sporting a gulp.  And I’m really proud of her.

A few things to note… I’m working on a blog re-do, to represent a different approach to things blog related as I move forward.  I hope to have it up this weekend. No promises. Braska’s finished day 2 of a 3-day wean (tube feeding transition tool…measuring ability, not actually weaning) I’m documenting that over at her blog if you’re interested. Tonight we had medical exams for new life insurance policies. I’m 5’2”.  Not 5’3”.  I’ve been fooling myself thinking I had an inch I don’t have.  But oh well, still just plain short. We’re in the middle of setting up a special needs trust and doing our wills.  Hence the aforementioned updated life insurance policies.  It’s important, but it’s a lot.  I don’t mind the “someday I’ll be dead” thing…I’m good with all that completely.  But all the arranging and considering what we want for the girls, especially Braska, when she’s a teen and beyond.   Writing the Letter o...

A full night of sleep is a beautiful thing. Man, I'm so spoiled with this usually good sleeper kid I have. Last night was back to the norm, down peacefully and out for the night. And that was both of us, thank goodness. Today we head to the GI for a g-button check-up and then check in to see if the parts for her glasses are in. If they are, we're done with this trip to StL. I'm really praying we get to go home today. I'm ready to be home.

I try not to repeat post titles, but this one is destined to be a fave. I can't believe I've circumvented it for all this time already. We are headed for St. Louis again today. We're going to aim to do a one-day trip which means 3 hours down, get glasses at St. John's, then to Children's for swallow study and visit with Dr. R to check on the g-button. Then we'll race home to try to catch the Bears/Redskins game tonight. (Yep, that's right, we get NFL Network. Sorry to those of you who don't.) God give us travel safety, good visits, great people to work with, and help Braska be in good spirits. Amen.

(I don't have time to write two posts...so for those who check both, sorry to be repetitive.) Wow, that was quick. I laid her on the bed, walked out, played a little solitaire on my phone because they said I wouldn't have time to even log on to my computer, and they came to get me in about 9 minutes. That's quick. They didn't even give her ANYTHING, just pulled the PEG out (that HAS to hurt!) and then put the new button in. I'll have pics later, but for now, we're good and grabbing a bite to eat before we swing by Grandma C's house on the way home. They said she screamed when they held her down and such, but by the time I returned to the room, she was calm and happy and not even red-faced. She is such a tough cookie! Thank you, God, for such a tough little girl!

Tomorrow morning I'll pack up little Nebraska Larae and we'll head to St. Louis Children's . She has her "switch" procedure at noon, at least that's what I call it. They'll take the Corpak out and put in a Nutriport . The good part is that there will be no more tube on the outside, nothing for her to grab and tug on whenever she gets the chance. This morning she got it the best yet, and I thought she was going to pop it out. I just knew we'd made it all this way and the morning before it's switched, she'd get it out of there and we'd be headed to the ER. But she was caught in the act and all was saved. Pray for safe travel, successful procedure, no complications, and that Mommy and baby don't go crazy in the car for 3 hours down and then back again. Aw, darn! Just remembered that I forgot to pick up a couple books on CD for the drive. Grrrrrrrr Have a good one...

Baby steps to the phone. Baby steps call the doctor. Baby steps set a time. For those of you who know me maybe too well, you'll know I'm referencing my favorite movie . But I took the steps, called the GI dr, and I'm waiting for a call back to set a date. We'll get it on the schedule for the PEG , probably aiming for the 2nd full week of September. If she has a breakthrough before then, awesome...if not, baby steps to the hospital. Thanks for all the comment love. I appreciate the feedback and votes of confidence way more than you know. I think it's the best thing for her...and best is good. (But that's another post for another day.)

So I've spent alot of time this morning looking over information about G-tubes, specifically the PEG process , which is what our doctor would use. Braska doesn't seem to be improving in her eating, and I'm just getting tired of the battle. I feel like that makes me a bit of a mothering failure, to be honest, yet I know that I've tried everything I can for 9 months now. I just hate to put her through another procedure, and I guess I've become a bit paranoid about the possibility for complications. As I told a friend yesterday, they say it's routine, but what's routine? How can poking a hole in my baby's tummy be so routine? I guess this is just another one of those situations when being the adult is no fun. So many people say that their kids did so much better once they got rid of the NG and went to the G-tube, but then there are a few who seem to simply have a different set of problems. And if I'm going to have problems anyway, I'd rather do it w...

Today we'll see a Dr who will tell us about a G-tube...what it is, why we might be interested in it, and the risks involved with it. He'll probably tell us that there are always small risks with any procedure, but that it's safe. I still don't wanna do it. Let's break down the percentages. 3% of children who undergo anesthesia have a reaction. That's 3 out of 100 for you that struggle with math, like me. I don't wanna be one of those three. 1% of patients develop infections after this type of procedure. That's 1 out of 100. I don't wanna be that one. When do the numbers get easier to work with? When do we get to stop being ruled and haunted by the percentages of risk vs. benefit? I guess that's life. I suppose it never ends. That's ok, but for now, I just don't wanna...