Kali's half birthday is today.
She is a 4 1/2 year old bundle of energy!
Today I got to enjoy some of that energy as it was warm enough to venture outside with Nora in the Snugli. I learned something about myself - I enjoy imaginative play much more outside. We took a walk in the "rain" with her umbrella. Then the weather kept changing and then it was "snowing" and she got on her "hat" and "gloves" and we made a "snowperson."
We also had two "picnics" along the way with "strawberries" and "grass cake."
Nora slept through most of it. And we also managed to be somewhat productive getting laundry hung up. I "hired" Kali this morning and she earned some coins helping me do a little straightening and cleaning.
Besides the one moment when Nora had just fallen asleep and I was sitting down to rest while Kali played on the computer for a few minutes and something went wrong for Kali on the computer and she melted down waking Nora up and ruining my chance at a quick rest, the day was a good one.
That is up until the doctor's appointment!
It was about a month ago since Nora was weighed at Harrisonburg Pediatrics so we were really hoping she might have reached the 7 lb milestone (about double her birth weight and reaching Kali’s birth weight). Neither Jason nor I knew if this was a reasonable hope but she had been gaining close to ½ ounce a day and that would have put her just over 7lbs. So you can probably imagine our horror when on the one scales she weighed in at 6lb 5oz. (last month she had weighed in at 6 lbs. 3 oz.). The nurse took us then to where they had last weighed her and she was 6lb 7oz. It didn’t feel a whole lot better to Jason and I. Only four ounces in a whole month!
How do we focus on the positives when gaining weight feels so essential? Dr. Ashton tried to be reassuring by letting us know that really bad would be losing weight, bad would be staying the same, and so-so is gaining but not gaining as quickly as we’d hope. He also said once again that he really has no idea what is “normal” for Nora and that there is no book he can pass to us to help us know what to expect (we are writing it as we go). He did feel like it might be important to consult the metabolic specialists at UVA just to see if they would provide some expertise that would be helpful as we try to figure out how to best care for Nora.
Complicating all of this is the fact that we are likely looking at surgery on Nora’s skull yet this spring/early summer. Yes, CT scan results from UVA did show that the coronal suture on the right side has prematurely fused. We go back to UVA on March 11th to meet with the two world renowned neurosurgeons that would do the surgery, along with the plastic surgeon who works with them. If they feel surgery is important to open up the suture that will likely take place in May and would be a fairly major surgery. Dr. Ashton feels it is important that she is showing that she can grow and gain weight before she is put through major surgery which will take so much energy to heal from. So we will be working with him in the coming weeks as we have some big decisions to make. He wants to see us again in two weeks to check in on her weight again.
On the positive side of things, she took her two shots (another Synegis to continue to protect her from RSV and her first HIB vaccine) like a trooper today. She seems much more grown up to Jason and I. And while she may not be packing on the ounces at any kind of notable rate, she is doing new things every day and that feels good. She is cooing and smiling many times a day. She interacts with us and her favorite toys consistently. She loves to be carried around holding her little head up and looking all around. And while she continues to have skinny little legs and arms, they must be developing a pretty good layer of muscle from all the kicking she does and batting her arms around (particularly when she has her little sock rattles on).
So we journey on – with the ups and downs and the many questions that remain unanswered. I recently picked up Traveling Mercies: Some Thoughts on Faith by Anne Lamott that I had read some years back. In one chapter she is reflecting on a time when she was waiting for test results about her little boy, Sam. One line in particular stuck out to me: “But patience is when God—or something—makes the now a little roomier.” Many days I feel I could use a bigger dose of it!
There are days and moments where I feel that we will make it through this time in our lives, that there will be brighter and clearer days ahead. Maybe we’ll even look back on this time able to see more of the gifts and beauty in it. But it’s hard a lot of the time to not feel really overwhelmed by it and to feel completely sucked dry. One of the things I’m particularly struggling with right now is feeling unable to really do much of anything well and it leaves me feeling spread thin and exhausted. I’m working 3 long days a week in the office and even on my most productive days I feel like I can hardly scrape the surface of what needs to be done. There are a lot of changes in the works at CJP and that always creates additional meetings and extra work. It would be a lot easier for me to let go of the fact that I can’t get everything done if I didn’t care so much about the people I work with, the work that I’m doing and about the organization. Then I come home wanting nothing more than to sleep but need to attend to the needs of two little ones, our home, making sure everyone is fed at least a semi-balanced dinner and trying to plan and prepare for the next day. I feel like I often am not able to be present to Kali at all because of Nora’s needs and there are many nights I just end the day feeling disappointed with my inability to be who I want to be (and at one time could be) for Kali. I’m grieving the changes in my relationship with her; what feels like a loss of something really precious. I am reminded by others that children are so resilient and I believe somewhere deep down that Kali and Nora are probably the two members of the family doing the best with all we are facing. Nora seems pretty oblivious to the great stir she has made by her entrance into the world!
Speaking of Nora, it seems her nap in daddy’s arms is about over and I’ll probably be called in for some nourishment. We’ll be in touch again before too long – hopefully on a day when the one of us writing this update is feeling a bit more creative and a bit more hopeful. It’s been a good exercise for all of us to say one thing we are thankful for before meals. Kali almost always says “Nora.” Today I was thankful for the sunshine to dry laundry outside. Jason mentioned feeling thankful for times that provide a reason to feel hopeful. While we may not feel so hopeful about things in our immediate family, he was feeling hopeful about the possible outcome of our upcoming presidential election. I think we are both looking forward to the time when we can have more energy to look outward again!! Blessings, Janelle
Kali's half birthday is today. She is a 4 1/2 year old bundle of energy! Today I got to enjoy some of that energy as it was warm enough to venture outside with Nora in the Snugli. I learned something about myself - I enjoy imaginative play much more outside. We took a walk in the "rain" with her umbrella. Then the weather kept changing and then it was "snowing" and she got on her "hat" and "gloves" and we made a "snowperson." We also had two "picnics" along the way with "strawberries" and "grass cake." Nora slept through most of it. And we also managed to be somewhat productive getting laundry hung up. I "hired" Kali this morning and she earned some coins helping me do a little straightening and cleaning. Besides the one moment when Nora had just fallen asleep and I was sitting down to rest while Kali played on the computer for a few minutes and something went wrong for Kali on the computer and she melted down waking Nora up and ruining my chance at a quick rest, the day was a good one. That is up until the doctor's appointment!
On the positive side of things, she took her two shots (another Synegis to continue to protect her from RSV and her first HIB vaccine) like a trooper today. She seems much more grown up to Jason and I. And while she may not be packing on the ounces at any kind of notable rate, she is doing new things every day and that feels good. She is cooing and smiling many times a day. She interacts with us and her favorite toys consistently. She loves to be carried around holding her little head up and looking all around. And while she continues to have skinny little legs and arms, they must be developing a pretty good layer of muscle from all the kicking she does and batting her arms around (particularly when she has her little sock rattles on). 
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