A New Normal

Let me preface this post by saying- I'm tired! So if I make absolutely no sense at all, I hope you'll forgive meJ I had a good friend describe having an infant is like a chronic sleep deprivation experiment…I tend to agree wholeheartedly. The really good thing is that it is temporary, and as they say "this too shall pass". It's a strange mix of the desire for time to speed up to get past this stage, and also to slow down as we know it passes much more quickly than it should. The other day we were looking at pictures of Addison when she was this little. It was a stark reminder of how quickly they turn from babies into little kids.
Since my last update, we've had several follow up appointments for Meghan. At her one month appointment, she had gained a whopping one pound since birth! She was also diagnosed with torticollis. We had noticed that she always held her head a certain way, and is unable to bring her right ear to her shoulder. The pediatrician made the diagnosis official and we are headed for physical therapy. We had also noticed some swelling around her shunt that did not alleviate with positioning. The neurosurgeon felt that fluid may be leaking around the entrance point through the skull and they turned the shunt setting back down to increase how much fluid is taken off. Thankfully by this morning we noticed that it is pretty much back to normal. I am really grateful for that programmable shunt valve!
Today we spent the day at main campus again (we're really getting to know our way around that place) for audiology and neurology appointments. Meghan failed the newborn hearing screen in her left ear so we were referred for further testing. Miss M did a great job of cooperating during the test, but unfortunately it looks like she has hearing loss in the left ear. We go back next week for more extensive testing to confirm, but they suspect a sensorineural type of loss. The right side was re-tested as well and passed with flying colors, so we are very happy with that! We then headed over to her neurology appointment. At this point he was most concerned with getting her into physical therapy to alleviate the torticollis, but also to help her begin to meet her developmental milestones. Because her head is larger than the average infants, she has to try twice as hard to lift her head and hasn't quite got the hang of it yet. He also noticed a small amount of "spasticity" which could correlate to the very thin amount of white matter he noted on her MRI, but this is something that develops the most rapidly during the first 2 years of life- so there is a good chance that now that the pressure from the fluid is being relieved the white matter may start to develop more as she grows. It's a new thing for us to pray forJ

Now for the good stuff! We had a great Easter with the family, and even managed to get everyone dressed and to church on timeJ A while ago we weren't even certain that we would be home from the hospital by now, so to be able to enjoy the day was an extra blessing. In the midst of a lifestyle we didn't expect, we are settling into a "new normal"…a normal that includes a lot more appointments to get to, a house that is decidedly messier than this mom would like, and a normal that makes PB&J a new dietary staple. I do smell like "old milk" most of the time as Addie has, and will, tell you, but it is all worth it when I get to kiss the sweet cheeks that are getting slowly chubbier every day. I might be tired, but I'm happy, because that's normal….

  

Addie (left) and Meghan at 6 weeks….they sure are sisters! 

Easter Sunday!