Monday, March 24, 2014

In Other News (& More Recent Pictures)

Other than the latest discouraging news on Addy's eyes, Addy is doing quite well. She is growing and developing at a perfectly normal rate, and she continues to get good reviews from the doctors on her head. Most people who learn about her cranio challenges for the first time say they never would have known!

The biggest change to the household that has occurred in the past couple of years is that Addy is now a...


Addy's little brother was born this past September. While I don't include a lot of details about Addy's siblings on this blog, I felt this one was significant considering some of you may be reading this from the perspective of one who has had a child with craniosynostosis and are now no longer sure you will want to have any other children, for fear that they will suffer from the same condition. This question was a factor for us as well, but considering the fact that we had two other non-cranio children before Addy and that Addy displayed no signs of any genetic problems, we felt fairly comfortable moving ahead with our family planning. (And ultimately, if we were to have another child with cranio, we knew we'd made it through once already and could probably survive the journey again.) But I am happy to report that Addy's little brother has just about the most perfect little head I ever saw!

We had an interesting little run-around about halfway through the pregnancy, though, as my providers (midwives in a free-standing birth center) began to express some discomfort at the idea that they might have to deliver a child with this condition. Their main concern was that his skull, if partially fused, would not be able to fit through the birth canal, making a natural birth (the only option at the birth center, barring emergency transfer) impossible. This did not concern us, as Addy had been delivered naturally by these same providers without any problems, and an informal poll of some fellow cranio moms online told me that most of them did not have problems during delivery either (other than complications not related to the cranio).

So, Little Brother's head received a good scrutinizing at our 20-week ultrasound, with no problems observed. But since they were unlikely to find anything at that point anyway (these problems don't usually crop up until later), they recommended that I get another ultrasound closer to delivery, around 35 weeks or so. Feeling that this was unnecessary and could only lead to more anxiety, we asked to decline, and after a bit more info from me (plus a little from Addy's plastic surgeon's office), they decided to grant our request and go with the birth we had originally planned. Little Brother apparently decided to blow them all out of the water and arrive after only 5 hours of labor, just to prove that he was quite capable of fitting through the escape hatch. ;-) And thus, all was well, and Addy remains our only child to face these special challenges.

Proudly holding her little brother.

Addy adjusted surprisingly well to the new baby in the household, and seems to enjoy her role as one of the "big girls." She often helps me out with her little brother, but she continues to love her some Mommy time. Thankfully, though, after struggling for years of wanting Mommy and ONLY Mommy (increased separation anxiety seems to be common in children who have gone through traumatic experiences like she has), her daddy and sisters are now members of Addy's Most Trusted club, and she is even doing much better with outsiders (such as her Sunday school teachers). She is quite a sociable little thing, and though usually very soft-spoken, she has pretty much zero fear of any person (as long as one of her Most Trusted is close behind her).

Addy & her siblings

Addy is now on par with her peers developmentally, and is proving herself to be quite a smart little cookie. She goes to AWANA Cubbies with Big Sister #2 and often has her weekly verse memorized more quickly than her sister. She is quite a little chatterbox much of the time, and can usually be found having her own little adventures (often modeled after whatever TV show she is into at the time). At just shy of 4 years old, she is not doing too much in the way of preschool, but she is beginning to learn to read, and doing quite well with it so far.

Addy on a visit to the beach this past month.

Keep at it, little girl! You are doing great. :-)

1 comment:

Karen Farris said...

These kind of "journeys" aren't the ones we want to take, but as you've shown, God has done a mighty work through it. You're such an encouragement to us all. This is a very special journey--because God's grace and peace shines through it all.