Saturday, October 12, 2013

What's New with the Kids?

As I said last time, this week was a quiet one for Annabelle.  At Monday's speech therapy visit, she ate very poorly, as she has been doing all week.  Not sure why her feeding skills are so darn inconsistent.  Next Tuesday we'll have a visit with the G.I. clinic, so maybe they'll have some suggestions for the next step.  It may be time to get the feeding tube back.  I really don't want to do that, but it is really difficult to feed Annabelle her bottles these days, and her weight gain has really slowed.  She is now 10 pounds, 11 ounces, which is very small for her age.  She is still gaining, but at a slower and slower rate.  I am hopeful that if we could get her caloric intake consistent and give her a little break, perhaps she could regain some of the feeding skills she seems to have lost and we could get her weight gain and maybe even her development to accelerate a bit.  I also had this brainstorm and thought that probiotics might help with whatever is going on in Annabelle's gut.  She seems to get so uncomfortable every time she has a few days of drinking a higher volume.  It still seems like things aren't quite moving through right.  So I'll have a lot to discuss at the appointment next week.

Thursday's physical therapy visit was mostly me griping to our therapist about Annabelle's poor eating and Sophie playing super-cool games on the therapist's iPad.  Annabelle slept blissfully through the whole thing.

Annabelle has been more smiley.  She really enjoys having us put our faces close to hers, and being kissed and stroked on her cheeks and nose.  In fact, we found a new trick to get her to laugh:

She is also grabbing like crazy, especially my hair, her clothes, and my clothes.  Because her visual skills are so delayed, we are still working on reaching for and grasping toys.  But I think it is coming.  Tummy time remains a struggle, but with the right toys, her two-minute sessions are less fussy.

Next week we see the cranial clinic about her flat head, the G.I. doctor and dietician, the cardiologist, and the surgery team.  Hopefully we will be able to schedule the surgery to correct Annabelle's imperforate anus.  I am hoping that the surgery may help with her feeding and digestive issues as well.

Lest you think that I have nothing to report about Sophie, here are a few things that she's done to make me laugh and to swell with pride this week:

  • She very excitedly told me that she was putting her crayons away in a special way and that I couldn't look until the next day.  When I saw them, I was impressed to see that she had put them in three right-side-up, three upside-down, three right-side-up, etc.  She said "I wanted to make a pattern, Mama!"  
  • A current favorite pastime is collecting small objects from nature and making beds for them. So far we have had several pine fronds, a bean, and a leaf named Jennifer who was tragically lost at the post office before her bed could even be made.
  • Another favorite is "Safety Belt," which involves Sophie putting a belt around her waist, me putting one on my head, and both of us holding a third belt while spinning at top speed around Sophie's room.  It's actually kind of fun.
  • Either Keegan or I used the word insane in conversation.  Sophie's take was "Sane is a place where no one wants to go.  What do people do in Sane?"  
  • This week Sophie danced to her first oompah band and learned how to do the funky chicken!  

Next week Grandma and Papa will be here, and I get to volunteer in Sophie's classroom again.  It's spider week!  I am so excited!  Here's hoping that the weather will be nicer, we'll get good news from all the doctors, and we'll all be over our dreadful colds.

Saturday, October 5, 2013

First Weekly Annabelle Update

I know many readers are probably wondering what's new with Annabelle's health and all of her many doctor visits.  Things have quieted down a bit since she was being seen by a bazillion doctors in the NICU and since those first few months home.  But we are still seeing eight specialists, her regular pediatrician, and two therapists.  Yikes!  Seven of the eight specialists are in Richmond (about an hour away), with the other in Newport News (a half hour drive, if traffic isn't bad).  Thank goodness both therapists come to our house (a zero minute drive, hurrah!).

This week I took Annabelle to Richmond to see her neurologist.  He gave her a neurological exam, which she HATED, and referred us to the craniofacial clinic to have someone look at her flat head.  The neurological exam involved the doctor holding Annabelle in different positions to check her muscle strength, reflexes, and muscle control.  The doctor didn't see anything concerning this time.  It is clear that Annabelle is developmentally delayed, but we expected that, so it was no surprise.  She has good head control but needs more time on her tummy to learn rolling and strengthen the muscles needed for sitting.  Unfortunately, she still despises tummy time.  At our last neurology appointment in August, the doctor mentioned that Annabelle's head is flatter on the right side than on the left, a condition called plagiocephaly.  A lot of kids get this now that they recommend kids sleep on their backs.  The pressure from constantly laying on the skull combined with the softness and flexibility of baby skull bones causes a flat spot.  It can be corrected simply by reducing the amount of time that pressure is on the flat spot (we hope!) and also by wearing a special helmet (we hope not!) or, as a last resort, by surgery.  The neurologist said it was a good idea to visit the craniofacial clinic now before things got any worse so that we could hopefully get away with less intervention but still keep an eye on the problem.  I am not thrilled about having another doctor to visit in Richmond, but I grudgingly agree with the neurologist's thinking.

On Wednesday, Annabelle's speech therapist came to work with her on her feeding skills.  Annabelle drinks her bottle inefficiently and noisily.  Her guzzling noises are cute, but they indicate that she is not getting a good seal on the nipple and is therefore swallowing more air and working harder to get the milk.  This week Annabelle was asleep at her appointed time, so the therapist gave me some more mouth exercises to do to help Annabelle's tongue and jaw.  I was skeptical at first that these exercises would make much difference, but Annabelle is eating more efficiently and has been smiling so much more that now I think the exercises have really helped.  Wanna see?

So, three times a day I stretch and gently rub Annabelle's lips and gums and encourage her to chew on my finger.  I hope that she'll continue to get stronger and more coordinated because introducing solid food is not far off, and I want her to be ready!

The biggest issue with Annabelle this week was her eating.  She is currently on a super-fancy (and expensive) formula that is made up of simple amino acids and basically requires no digestion.  We mix that with harder-to-digest rice cereal in order to increase the number of calories she gets per ounce.  She needs extra calories both because she isn't able to drink as much volume as she should and because of her heart defect, which means that she requires extra energy to keep things running.  Getting the ideal proportion of rice cereal has been tricky.  Too little, and she's not gaining enough weight.  Too much, and her system gets backed up and she stops eating well.  In the middle of the week she wasn't eating well at all, and I was so worried.  I really don't want her to have to go back on a feeding tube, so it's very important that she continue to make progress with how much weight she's gaining and how much she can take from the bottle each day.  To have a few days of poor appetite is very, very stressful!  Fortunately, cutting back on the amount of rice cereal we mix into the formula has really seemed to help, and the past few days have been record-breakers for Annabelle!  I hope she'll show a good weight gain next week.

Tummy time is increasingly important, both for developing the ability to roll over and to give Annabelle a position that puts no pressure on her flat head.  I have been trying to get her to lie on her tummy, on top of the Boppy pillow for extra propping, for just two minutes a day.  She is not happy.

Tummy time is for the birds!
But today I discovered that if I let her look at Sophie's angel nightlight while she's on her tummy, she is at least quiet and interested.  She loves lights, so I'm glad that we can make use of her moth-like attraction.

This coming week is pretty quiet - just a visit from her speech therapist on Monday and the physical therapist (who works with Annabelle's vision and holds my hand a lot, too) on Thursday.  I will try to update again on all that next weekend.