therapy

The Sweetest Sound

~ riadawson ~ 1 Comment

Hearing your baby girl laugh is always amazing.  Hearing your baby girl laugh when you weren’t sure IF she would ever laugh is even better.  Little Baby B loves raspberries on her tummy.  I mean, she LOVES them.  Nothing makes her laugh like those.  Baby A laughs, too, of course.  She’ll laugh when you make silly noises on her tummy or tickle her.  They both love to look at each other and smile.

So — yay!  Little B is progressing!  She’s growing, slowly.  Her kidney function is about the same, and the nephrologist thinks that we won’t have to worry about a kidney transplant until she’s older.  She’s doing well with therapy.  She sat up with her physical therapist for about 2 minutes yesterday, and her occupational therapist worked with her today and said that she is pleased with how her tone is decreasing (the cerebral palsy makes her muscle tone very tight).

But she also cried most of the way to therapy and most of the way back.  I’m always wondering what the next thing will be.  What’s the next obstacle?  What’s the next issue?  She’s doing really well right now, but she’s having trouble eating solid food.  A swallow study is coming up soon, just to make sure she’s not aspirating food.  I don’t think she is, but swallowing is still tough for her.  So while I watch her sister grabbing toys, rolling around, starting to move and bounce and sit — I watch and wait for Baby B to make those same moves.  I don’t know if she’ll ever move as freely and easily as Baby A.  The effortlessness of a baby’s grasp is only effortless if the baby’s fists aren’t tightly clenched most of the time.  For her, everything requires effort.  She has to be stretched so she can use her hands.  The calculation required for her to get her tiny thumb in her mouth is so evident; it’s cute and almost comical, but if I think too hard about it, I get sad.

The tangle of emotions is constant.  I’m so happy to hear her laugh and watch her finally get her thumb in her mouth, but what simple task will she struggle with next?  She doesn’t really roll.  Who knows when she will be able to do that, or crawl, really sit on her own, stand, walk, talk?  While Baby A says “Ma-ma-ma-ma-ma” and “Da-da-da-da-da,” and we get some great coos and “goooo”s from Baby B — when will she call for me?  How hard will she have to work to make those sounds that come so naturally to other babies?  She’s beautiful and sweet and snuggly, but I feel like with her, I’m always waiting for the next thing that will be a struggle.  I celebrate the little victories like the belly laughs, but then I immediately cross that off the list and look out for the next challenge.

It’s a struggle for me to live in the moment.  I just want to be excited and not be filled with worry.  I need a good meditation to help focus on the good things that are happening.  I have two beautiful baby girls and a handsome little boy who deserve a mommy who lives in the present and doesn’t waste time worrying about the future.

So, I need to remind myself that every day is a victory.  She has amazed us.  When she was born, we didn’t know if she would ever be able to do anything, and she can and does do all kinds of things, and she will do even more.  Wondering what’s next isn’t productive.  It makes me sad, and a sad mommy is a shitty mommy.  I love all of my kids.  I want to enjoy each of them and all of their accomplishments without that anxious voice reminding me that the future is uncertain.  The future is always uncertain.  It’s time to just move past that and BE.  My kids are and will be amazing.

Break Time

~ riadawson ~ 2 Comments

One of the hardest things about being a stay at home mom is that I never get a break.  I’ve had horrible neck and shoulder pain for 4 days, but it doesn’t matter.  My son was vomiting all day on Saturday, so I was right there with him…and then I got sick.  I haven’t left the house in three days, and I’ve been living in pajamas.  But I can’t call in to work tomorrow.  At least my toddler is feeling better, so he is going to go to the babysitter’s house.

Last Tuesday, I went out to dinner with two of my close friends from my teaching days.  We all had baby girls last year, so there were three adults, one toddler, and four baby girls.  My toddler was literally climbing the walls (a short dividing wall), and we all spent most of the time feeding and dealing with our own kids.  I had to hold Baby B because she cries if she’s not being held.  By the end of the meal, I wondered why I had even bothered to spend money going out when I didn’t even get to have a conversation with my friends.

I know it’s important to spend time with other people, but I feel like none of the time I spend with anyone is quality time.  It’s really discouraging.  I can’t even speak a full sentence.  My closest friends and I communicate mainly through Facebook and text messages.  There are days when my husband and I don’t say anything that’s not kid-related, let alone snuggle.  All of my kids want my attention, and they need my attention, but how do I give it to everyone?  As I held my Baby A last night and rocked her at bedtime, I realized that I miss that.  It’s so rare that I can snuggle with her.  Baby B usually takes all the snuggles and needs all the attention.  My toddler still has someone read to him and snuggle him until he falls asleep, but the majority of the time, I feed both babies in their Boppy pillows, then Baby A goes to sleep on her own while Baby B finishes her bottle.  Then, Baby B gets snuggled to sleep.  She snuggles and nuzzles all night, because she needs that comfort in order to sleep well.  The time I can spend with Baby A makes me both happy and sad, because I can’t be with all my kids at the same time, and it seems like little A gets the shortest amount of time from me.

I feel like I’m a full-time mom to Baby B, a part-time mom to my toddler and Baby A, and a per diem wife to my husband.  I don’t know when the dynamic will change, but it has to — for the sake of my sanity and my marriage.  I don’t know when I will be me again, or even if the “me” I once was is still there.  It’s so hard to try to keep up with everything, and I can’t; I feel guilty constantly.  My husband and I have to get some time alone together to reconnect without the kids interrupting.  We have a long weekend in NYC planned for our fifth anniversary in December, and I can’t wait.  I am sure I’ll miss the kids, but we need that time together.

In other news, Baby B saw the neurologist last week for a follow-up visit.  He seemed happy with the progress she’s made through therapy, and he said he would contact our insurance company to try to get her more than the 90 allotted therapy visits per year.  However, he was not hopeful that it would be granted.  He’s ordered a swallowing study to see if she’s aspirating when she swallows.  In his words, “that’s what usually gets kids like this [with brain injuries] later in life.”  I, of course, heard that as “that’s what usually kills these kids,” but my husband heard it just as “that’s what causes problems with these kids.”  Either way, we don’t want her to have problems, and we certainly don’t want her to have to be tube-fed.  If only the insurance companies would see the progress she has made since beginning therapy in May.  We will still get her the therapy she needs, but it would be wonderful if the insurance would cover it without hassle, like they should.  I’ll just send them a video of her with her big smile and bright eyes, and they won’t be able to say no.  Or I’ll just fight them until they say yes, but I’m hoping we don’t get to that point.

OH!  And Baby A is getting her first tooth — the bottom right tooth.  Plus, she is saying, “MAMA!”  She’s said “Dada” a few times, but mostly she says, “Mama.”  I’m so proud and happy, and it makes me feel even more guilty that I don’t snuggle with her more.  I know that Baby B needs it and cries whenever she’s not being held, but I want to hold all my kids and snuggle all of them equally.

New Therapy

~ riadawson ~ Leave a comment

Baby B already goes to physical, occupational, and speech therapy multiple times a week, but the pediatric dentist who performed her lip and tongue tie severing procedures recommended craniosacral therapy.

What the hell is that?  I have no clue.  If you google it, you’ll see craniosacral therapy defined as:

  1. a system of alternative medicine intended to relieve pain and tension by gentle manipulations of the skull regarded as harmonizing with a natural rhythm in the central nervous system.

With the recommendations of the owner/speech therapist at the therapy place, we set up craniosacral therapy for Baby B.  I couldn’t tell you what happened.  It looked, to me, like the therapist put his hands on the baby’s chest and back and she squirmed around.

During the therapy, he asked what the birth process was like, and I told him that she was a c-section.  The speech therapist explained that she spent some time in the NICU, and he asked if it was for breathing.  I said, “yes, initially; but she stayed to get the MRI of her brain and monitor her kidney function.”  He asked if she was ok now, except for her head size, and I said no, because she still has kidney problems and might need a kidney transplant.

After about twenty minutes, he said that it seemed like her body was done, but he still hung on to her feet until she calmed down.  The therapist said that the body has its own intelligence and knows what it needs to do.  He said that her body needed to go through the birthing process, and he asked if I noticed that she seemed to be moving around like she was going through the birth canal.  I think I held back my super-skeptical face, but he probably could read the skepticism anyway.  “I know it sounds like hokum,” he said, “but it works.”

When he left, I kept shaking my head.  It didn’t even look like he was doing anything, but he tells me that her body needed to go through the birthing process?  It was just too weird.

But — in the last week, I have noticed a change.  The other therapists have noticed.  Her arms and hands are looser.  Her back is straighter and shoulders are back more.  Her legs and hips are more limber and looser.  He could burn incense and chant incantations for all I care — if it helps her move more and feel better, I’ll do it.  I can’t wait to see what the next sessions will do for her!