Farewell, Valgancyclovir

On Saturday, Keira was 6 months old. It was also the day that we stopped giving Keira the antiviral medication that helps to ward off the CMV. It's also the last time I fell apart. 

My inner monologue went something like: I'm not spending enough time with Keira. Or Ronin. Or Liam. Or Jeff. My work at the office has been half-baked. Ronin's behavior is driving me nuts. Liam has been sick enough to need lab tests two times and since when is that not alarming enough to be the highlight of my week? It's been 6 months and I still can't clean my own house. Heck, it's been 6 months and I haven't spent more than a couple of hours home alone with the kids without help. Jeff is uber stressed and busy at work but I barely know what's going on there. My memory is shot. I would love to help Grandma throw a baby shower, but I have no resources to spare. I don't know how many more times I can do baby crunches and back extensions...it's not getting any better. I probably shouldn't have had a play date with another 6-month-old (Sorry, Anneke). Such a show-off, looking all around the room, rolling over, etc. I can't believe I still have this baby weight and every morning have to decide which pair of too-tight jeans to wear. I feel so different than other moms and like my decision to be very public is backfiring. I don't know how to relate. All I want to talk about is Keira but I don't want to sound self-centered. I'm so self-centered. I want so badly to be part of a community but I'm understanding why some people become isolated and shut-in. I so looked forward to going to church on Wednesday, but it was too much for K. She cried the whole time. Then on Friday, she stayed with Grandma and Papa (a less familiar environment), and she didn't eat! We can't do anything as a whole family. I crave friends but I have nothing to offer. My backup supply of milk is gone and I have to give her formula when I go to work. And we just finished giving her the Valgancyclovir which was one thing that made me feel like we were doing something good for her.

Thank goodness my folks know me as well as they do and they stepped in.  Not sure what keyed them in to the fact that I was struggling. It might have had something to do with the fact that I pulled Ronin's arm too hard when he fell into a heap on the floor over a snack that he wasn't getting.  So Jeff and I went to dinner. I felt much better after that. Those thoughts, I'm well aware, are just one side of the coin and I can't stay there very long or I'll cave in. But to come out of it, I feel like someone (Jeff) has to climb in there with me and walk me out. I do feel much better this week.

Monday was Keira's 6 month doctor's appointment. 13 1/2 pounds! Her head circumference is on the chart, too! Okay, so it's the 0.1 percentile, but that's better than the vague "Below 2nd percentile" which is the categorization below it. The doctor noted that we probably won't give K solids until she's about a year because she's currently functioning about like a 2-month-old...

Like a "2-month-old." Huh. That was strangely comforting to hear. As imprecise and meaningless as I know that estimate is, it effectively made me feel a little more grounded. This is where we are. Period. She is delayed. Period. This isn't surprising, no, but on some level, we've been spending all of this time scrambling around....all the doctors and all the interventions...for what? Trying to avoid or prevent or minimize or optimize or what? She is who she is. She will be who she will be. 

Not to say that all of the therapies are useless. At least sometimes they seem to do wonders. At the very least, we're are learning how to help her to be comfortable in her world. However, there may be a time when enough is enough. We continue to have 3, 4, or 5 appointments a week. Many of you have asked what therapy looks like for an infant. Here's my list, ideally to be completed several times every day: 

Oral Motor

1. Hyoid stretch

2. Jaw Massage

3. Tongue massage

Sensory

1. Deep squeezes

2. Massage

3. Joint compressions

4. Weighted blanket

5. Music therapy

Visual

1. Practice tracking, one color at a time, across field of vision

2. Bolster under right side to encourage bilateral processing

Motor

1. Range of motion with arms and legs

2. Extension exercises (tummy time, etc)

3. Flexion exercises (crunches, basket, C-stretch etc)

4. Finger compressions

5. Thumb massage

6. Hand splints

7. Assisted rolling

8. Crawling practice

9. Supported sitting

10. Side-lying stretches 

I pause here before posting this to the worldwide web. Should I really put all this out there? I don't want family or friends to feel sorry for me or to feel guilty for anything. Neither do I want to come across as self indulgent and sorry for myself. I think back to my original intent for this blog. I hoped to create an outlet for myself and to be vulnerable and self-effacing enough that others might feel some sort of inspiration or encouragement somewhere along the way. I suppose to do that, I have to continue to be vulnerable. So, here it is folks. Bless you.