One Year Older and Maybe Wiser Too...?

Wow. Abby is one today. Sometimes I still feel a little shell-shocked when I think of her first few weeks of life. Did we really do that? I guess we did. This may feel a little generalized and a little bit of a blanket statement, but know that I genuinely mean it: Thank you. Thank you to everyone who brought us food. Thank you to everyone who talked with us, even for just a few minutes. Thank you for all of your texts, calls, emails, prayers, etc. Thank you. Please know that we are so aware of all of the love and support that we've received and we are so grateful to you and to our Heavenly Father. We have been immensely blessed.
3.14.16
A few days old.
Ready to go to Primary's!
Okay, so I think that part is done. Now for an update. Last week was full of doctors appointments. Don't worry, just her year check-ups to make sure we aren't missing anything serious.

A little skeptical...
She was quite content to watch what the nurses were doing.
Abby had a full MRI to look at her brain (to examine the shunt, check her ventricular size, and check on her Chiari II Malformation) and her spine (to go over the closure and make sure no scar tissue has built up, causing issues). While we didn't love going to Primary's in the wee morning hours, Abby did surprisingly well during her hunger and tiredness. She only cried during the IV insertion (well, the first attempt didn't do her any favors for sure) and for a minute as she was falling asleep into the sedation. While she was getting imaged, we went to her old unit to look for our favorite nurse. We were able to give her a few pictures of Abby and say thank you. It was nice going to the unit without having to stay. We also were tempted to get some food and apple cider from the hospitality cart, but thought we probably shouldn't... Anyway, then back down to Abby. Coming out of recovery is my absolute least favorite, as it's hard to watch Abby be so confused and a little betrayed. Apparently the second sedation drug they gave her is usually accompanied by a little bit of double vision, so I can't blame her for crying about that. The good news: the images show no change from her last MRI. Yay! I was a little anxious about it and thought they might have found some new thing to worry about. Thankfully, not this time.

After IV insertion. Still fairly good-natured!
Oh dear, coming out of sedation is the worst. At least we knew what to expect this time!
Next up was her renal ultrasound. This is something she gets pretty regularly, so we weren't too worried about that. The images also turned out well, no concerns - yay!

And then clinic. Oh, clinic. Here, she weighed in at 22.9 lbs and is 74.7 cm tall. She's such a big girl! Neurosurgery was really pleased with how she's doing - always good to hear! Urology didn't have too much to say, as she hadn't done her VCMG yet. Physical Therapy didn't see us for the first time (but I was okay with that - sometimes they make me feel a little inadequate and like we don't do enough for her...which is silly). The dietitian came in, and I was a little bugged because we had specifically requested NOT to see her, but that's okay. I was able to ask a few general questions about turning one and changing her diet a little to make sure we got our money's worth... And then the orthopedic surgeon came in to discuss his views on her feet/legs. He recommended that we get a brace for her right foot (it will look basically the same as the one on her left, but will have a little less plastic around her leg, where that side doesn't need the same level of support). This was good to hear from him, because all of her PT's have been asking about and we've been thinking that it would be good to get for her so that she can have a little more support while standing - this may encourage her to actually stand and bear weight on her legs. Overall, a very positive clinic trip! Abby endured it pretty well and only got a tad cranky. The other bonus, we don't have to go for another six months! That will be a dream.

She quite enjoyed dive-bombing into the curtain. This was a good distraction for a while!
Next up, the VCMG. She did pretty good for her last one, about six months ago, so we were really only a little anxious that they would find some things had really changed and we'd need to start cathing her. She did really well at holding still and actually was quite the ham. All of the doctors/nurses who were in there with us were pretty taken with her and were thrilled to give her a toy when she was finished. The doctor who takes the x-rays during the procedure is so great to explain everything as she goes and is very reassuring. She was pleased to report that her bladder, although small, responds to the pressure of the contents really well and there is no reflux damaging the kidneys - yay! She said that the shape and the texture of the bladder looked really good and we have no reason to worry. So good. Abby was quite pleased with that whole part of the day and we were pleased with the results.

Such a big girl, waiting so patiently for her VCMG.
Finally, a blood draw. Yikes. Too bad mom forgot the binky...that would have helped. I think Abby also has kind of sneaky veins that don't like to cooperate. There were more than a few tears during this part. But she got a toy there, and was fine after a little bit. She crashed in the car on the way home and slept for a couple hours after we got home too. Thank goodness.

So sleepy.
So overall, an incredibly successful week last week! We couldn't have asked for things to be any better. The only negative repercussion would be her behavior during outpatient PT this morning. Let's just say she didn't cry for about 10 of the 50 minutes we were there. Her therapist thought it probably had to do with the fact that she saw so many doctors last week and had a few painful moments she didn't want to re-live. That's the hardest and longest I think I've ever seen her cry. Maybe she'll be better during her next appointment. Her new tooth probably didn't help either. Yes, you read right. She finally has a tooth! It's one of her bottom ones and we can see it all poking up through her gums. Thank goodness.

We celebrated her birthday with family on Saturday. She loved being the center of attention and we loved having uncles, aunt, cousin, grandparents, and great-grandparents there!
So fun to play with cousin Lily!
Cake smash success. She loved rubbing her feet in the cake too.
This year has flown by. Really. I'd like to think we've come a long way and learned a lot. The one thing I keep coming back to is learning to be assertive and stand up for ourselves when talking to therapists or doctors or nurses. That was something I had never thought about. We've learned a lot of vocabulary. We've learned a lot about how the various areas of Primary's works. But maybe most importantly, is we've learned to take things one day at a time if necessary, and work toward small achievable goals. We are so in love with our sweet Abigail Cora and are excited for the years to come with her in our family! Happy birthday, little pumpkin.
She was so nice to try to share her cake....
Opening gifts was fairly successful.


Monkey baby.

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