Christmas 2011

Kaitlyn had a great Christmas, in spite of having a cold. We started out Christmas Eve by going over to Karen's to decorate cookies with Karen and Jenny. Kaitlyn started coughing and sniffling :( But after her nap we got dressed for the evening and hung out by the tree. She sure looks happy:

That night we went over to Grandma Aitken's for the annual Christmas Eve party and auction. Kaitlyn was a little mellow (I don't think she felt 100%) but she seemed to enjoy herself. And then we put her to bed upstairs so we could continue to celebrate. We woke her up to leave and were amazed that she went right to bed when we got home!

On Christmas Day, she slept until after 8! But when she got up, we showed her what Santa brought her. Here we are getting some morning cuddles in.

And here she is playing with one of the toys Santa brought her. Such a bright smile!

After we opened all of our presents, we headed back to Grandma Aitken's for more presents! Here she is playing with her new puzzle by the new table she got for Grandma's house. And look at the cute chair that Grandma refinished just for Kaitlyn. It was her chair when she was a child!

A Flurry of Words

Kaitlyn has been vocalizing a lot more and has been using some words:

Eat - yesterday my dad was talking about something she ate a few days ago. She heard him and must have been hungry. She ran off to the kitchen yelling, "Eat, eat, eat, eat." So cute.

Pretty - OK, this one really comes out as "ee-hee". I would point at the Christmas tree and the lights and say "pretty." She started doing it too. She would come in the front door after school saying, "ee-hee."

Yes - her occupational therapist, Kristi, was feeding her bananas. I guess she didn't seem interested, so Kristi asked her "do you want to eat your cereal first?" And she responded, "yes." Hmmm, as I think about that now I wonder if she was instead repeating "first." Either way, it is something!

Ma ma - last night when I was getting her ready for bed I was saying, "ma ma." She responded with something that sounded more like "na na." But again, I'll take it!

Red Room Updates

Here are some pictures from school. They do tons of arts and crafts. Here she is saying, "These feathers are weird - I don't wanna do it!

"Look - it's yellow!"

And we wonder why she doesn't nap at school? They let her play on the laptop while the other kids are sleeping!


This was the day of her Christmas party (they day after the sleep study). Looks like she was having fun.


And how cute is this!

The Sleep Study (and very little sleep)

On Thursday night we took Kaitlyn for a sleep study. We arrived at 8 pm and they brought us to this room that had a queen size bed and a TV. We talked to the technician for a little bit and decided to let Kaitlyn fall asleep before she put the leads on. So we told Kaitlyn it was time for "night night" and tried to get her into bed. (Here's where I'll tell you that Kaitlyn has never slept in a bed - always a crib. And Kaitlyn has never really slept in a room with us. When she was an infant, we would put her down for naps in her pack-n-play in the room where we were, but that is it.)

So needless to say, Kaitlyn had no interest in going to sleep. She thought it was really cool that we were there and she was bouncing on the bed, giggling and trying to play with me. I tried to lay down and close my eyes so she would lay down. She finally went to sleep sometime after 11 and the technician came in around midnight and started to put the leads on. Kaitlyn woke up during that process and was not happy. At first she would just pull her leg away or roll over with a huff as though to say "leave me alone." But then she got really mad. So the nurse left so she could calm down. She cried for awhile and then laid there with wide eyes. I thought she would never go back to sleep. (On a side note - in the middle of this I sneezed and she started giggling. At least she still had her humor!)

The technician came and went periodically after that. It was probably about 3 am by the time she finally got the last thing on her. Here's some info:
A polysomnogram (sleep study) will typically record a minimum of twelve channels requiring a minimum of 22 wire attachments to the patient. These channels vary in every lab and may be adapted to meet the doctor's requests. There is a minimum of three channels for the EEG, one or two measure airflow, one or two are for chin muscle tone, one or more for leg movements, two for eye movements (EOG), one or two for heart rate and rhythm, one for oxygen saturation and one each for the belts which measure chest wall movement and upper abdominal wall movement.

We were all sleeping pretty good at some point. I stirred at 5:30 and thought to myself "I hope they just let her sleep." But no, she came in at 6 and cheerily noted that we were done. We were surprised to hear we were successful in completing the study. We each worried that she was awake too much and that they didn't get the leads on in time to get enough data. So huge relief. It would have been HORRIBLE to do all of that for nothing.

I must say that sleeping next to her I noticed her snoring quite a bit. She used to snore quite loudly but we hadn't noticed it in a while. And she had a few times where she made some weird noises. I guess I won't be surprised if they observed some instances of sleep apnea. The results are due in 7-10 business days. We'll see...

The end was a bit painful. Kaitlyn was not happy to have been woken up from her sleep. And then she was very upset when the leads were being ripped off her. She was inconsolable. We quickly changed her diaper and then bolted. She didn't even calm down when we got in the car and she had a bottle. I think she screamed half the way home. Yikes. When we got home it wasn't much better. She was out of her routine and not very excited to have a bath at 6:30 in the morning (she looked like she had been through the ringer - the goop they used to put the leads on was all in her hair and it was standing up). After her bath I wasn't sure what to do with her. Her teacher doesn't get in until 7:45 so I didn't want to bring her to daycare before that. (They bring them to a different classroom and I figured she had enough trauma/weirdness for the day.) So I decided to shower and get ready for work. The entire time she stood outside the door screaming. She finally got it together when it looked like we were going to leave. I think she wanted as far away from me as possible!

I dropped her off at school and she looked like a zombie. I let the teacher know about the study and she said that Kaitlyn could lay down and rest if she needed. On the bright side, she napped for 2 hours that day - which is a record for her at school. She hasn't been napping well for them. I think there is too much excitement around her for her to let herself sleep much. That day was her Christmas party and I brought her over to my work to see Santa (aka my employee, Andrew). She was in great spirits. What a trouper!

"Wow, That's Impressive!"

That is what the pulmonologist said when he heard Kaitlyn's stridor today. I must say, that is not something you want to hear from your doctor! He said he couldn't believe someone that small could make that big of a noise.

The visit started out a little tough. The male nurse was not used to dealing with kids that were unhappy. Just trying to weigh in and get a pulse ox reading caused Kaitlyn to get super upset. I was a little worried that they trip would be wasted. But they gave us a few minutes to calm down. By the time the doctor came in, Kaitlyn was happy again. And man - this guy had the best bedside manner! Has to be the best we have seen. He visited with us for awhile because I wasn't really sure why we were there. So I brought him all the way through our history.

He had a lot of good information. We talked about the fact that laryngomalacia typically resolves by 12-18 months of age. (We had always been told that. However, here we sit at 2 years old...) He indicated that laryngomalacia sometimes requires surgical intervention. (Again not new news, but a topic we have not visited in a long time.) Surgical intervention is necessary when kids fail to thrive. We aren't having that problem. However, another reason to resort to surgery is due to sleep apnea. And so we have our next course of action: a sleep study.

We've often commented on how long Kaitlyn sleeps at night. Could that be because she is not getting the quality sleep she needs? And could lack of quality sleep be causing her developmental delays? I'm waiting on a call from the facility to schedule. In the meantime, we are having a hard time imagining getting Kaitlyn to sleep in a facility with electrodes attached to her body...

You Want Me to Swallow That?

Last Thursday Kaitlyn had a modified barium swallow study done. We had to be downtown at the Children's Hospital at 10 am to check in and register for our 11 am appointment. Unfortunately they were running behind, so they didn't call us back until 11:45.

The test was performed by a radiologist and a speech pathologist. They made a mixture of juice and barium for Kaitlyn to drink from her bottle. This is the second time we have done this procedure (first was at 6 weeks) and again she drank it like a champ. She was overall pretty unhappy being there, so the first few minutes were tough - trying to get her to sit down in the chair so they could x-ray. But the poor girl was thirsty and finally settled down and drank. They got to see some good swallows, but she was not interested in eating any food.

All in all, they were pleased with what they saw. They did see some instances of penetration (when the liquid goes into the trachea and stays above the vocal cords) but no instances of aspiration. They indicated that the penetration was likely occurring because she was drinking so fast and that if she transitioned to a straw, that would help. In addition, they told us not to let her lean her head back too much while drinking.

I guess good news that they didn't see any problems with her ability to swallow. We were done in 15 minutes. $1,000 well spent?