Well, I've been slacking. A lot has happened since my last post, but part of me hasn't really wanted to share it just yet. If you are friends with me on Facebook, or part of one of my support groups, you already know.
But I'll start with the GOOD!
Ruth is now 7 months old and thriving! Considering she was born 2 months early, and is only suppose to be a 5 month old, I think she is doing AWESOME!
She is sitting up without support for short periods, although she still leans pretty far forward.
She is also MOBILE! She isn't yet crawling, although I have seen her get up on all fours and rock a handful of times. But she can get to where she wants! I call it "inch worm" crawling, because she moves more like that than anything else. Check out a short clip of her in action!
Her feet are doing WONDERFUL! She is still in the braces full time, but only until the end of this month. Then she only has to wear them at night! I'm not sure at this point if she will end up in different braces, but for now, I can hope for bare piggies, at least if only for a little while ;-)
She is also loving her baby cereal, and so far has tried peas. I'm sticking with the "green" veggies for her, with the hope that she will love them when she is older.
She is smiling, laughing, blowing raspberries, and generally her personality is shining! It is so much fun playing with her. She LOVES her sisters, and is very entertained anytime they talk to her. She is a really happy baby, only fusses when she needs to "go" (see the poop section below), or is sleepy or hungry. She is no longer sleeping through the night (sigh), but sleeps from about 7 PM to 3 or 4 AM. We cath her and give her her meds, and she sleeps the rest of the night in bed with me. All night buffet! ;-)
We have had a much needed break from Doctor's appointments. With only two in Feb, and two in March! (other than the quick local ones, like RSV vaccine and pediatrician)
I thought I would post a photo of her scar. It is not as "neat' or "clean" as some, but from my understanding, that is one of the disadvantages of the fetal surgery. But it's beautiful to me, and she can always wear one piece bathing suits if it she doesn't want it to show!
Now, for the Bad....
Ruth had a rapid MRI a couple weeks ago. It was just of her brain, and required no sedation. I wouldn't let her nap all morning, so she was very tired by the time she had the MRI and slept through it. That was a Saturday. On Monday, we got a concerned call from her Neurosurgeon nurse, telling me that her ventricles have increased since her last MRI (in San Francisco last August). I was asked if I had seen any symptoms, which I have not.
Her neurosurgeon was on vacation, but we had the first appointment to see him about a week and a half later. He looked her over, looked at her scans, and her head circumference, and feels she will be needing something to help control her hydrocephalus. Either a VP Shunt or a different surgery, called ETV (Endoscopic third ventriculostomy). He ordered a FULL MRI for May, with sedation this time. I think this MRI will determine definitively if she needs surgery, and which one.
This is disappointing news, especially since she did have the fetal surgery we had hoped she wouldn't need it. But if she does need it, I'm glad its available, because it will save her life.
Unless she starts presenting symptoms before, she will go for the MRI and surgery in mid May. We are watching her closely, but so far her only symptom is her head has gotten bigger on the charts. Please pray for our little girl. Brain surgery is scary, even if it is considered a minor one (is there really such a thing as a minor brain surgery?).
So, now for the POOP. Lol. This may me too much information for some, so feel free to stop reading now. I warned you!
Our 7 month old baby is potty trained. Yes, I said it. Well, at least as potty trained as spina bifida goes. Since she is on medication to relax her bladder, and we cath her every 3-4 hours to empty her bladder, she no longers pees in diapers.
But she seemed to having some issues in the poop department. She never had BIG movements, just lots of little ones, mainly when I changed her diaper. She was not constipated, but did seem to be FULL of poop.
So I bought her a baby potty. It's like the toddler potty's people use to potty train 2-3 year olds, but smaller. We got it last Friday, and so far she has pooped in that little pot A LOT every time I think she needs to go. She gets fussy, I set her on it, and she goes! She has had ONE poopy diaper since we got it. In five days, I have changed ONE dirty diaper. I think that is potty trained to me? Maybe not, but I find it a little funny. And it works for her!