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?

Autism Evaluation

Today we had our appointment for the autism evaluation. The appointment started at 9 with a developmental pediatrician, a speech therapist, occupational therapist and behavioral therapist. They took turns playing with her and trying to get her to do certain activities in order to assess her. They observed from behind a two way mirror and we answered tons of questions. By 11 they were done and went to compile the results. We waited for 45 minutes or so and then the developmental pediatrician came back to talk to us. Kaitlyn was a champ! Very patient! We didn't leave to head home until 12:30. Poor kiddo was tired.

The diagnosis: Provisional Autism Spectrum Disorder. And Mixed/Global Developmental Delays. The developmental pediatrician was not willing to definitively diagnose. She felt like she definitely has some red flags, but she also sees so many sensory processing issues that they might be getting in the way of her development.

They assessed her developmental in each of 7 areas in order to determine her developmental age - gross motor, fine motor, self help, problem solving, social emotional, receptive language and expressive language. Her strengths were her gross motor and fine motor. Her weakest areas were self help (driven by the fact that she doesn't feed herself) and expressive language (driven by the fact that she doesn't speak or point).

She was given a 34.5 on the Childhood Autism Rating Scale (CARS). A minimum score of 30 is the cutoff for a diagnosis of autism on the mild end of the spectrum. Her score puts her in the mild range.

Her DSM-IV-TR (standardized criteria to help diagnose) was a 5. A score of 6 or more is considered on the spectrum.

They recommend more of the therapy she is currently getting - speech therapy 2-3 times per week and occupational therapy 2 times per week. They also want us to add behavioral therapy 2-3 times per week. Most likely we will have to do this through a private company as I don't think the agency we are currently working with can meet that frequency (and they don't offer behavioral therapy). We are to return for another visit like this one in 6-12 months.

Lots to process... but hopeful to have a new plan in mind.

Love the Ball Pit!

Kaitlyn gets to play in a ball pit at school and they say she loves it. So when she got one from Uncle Scott and Russell, we were super excited. She was a little wary of it at first. She would reach in and grab the balls but that was it. Tonight she was brave and stepped right in.

Feed Me?!?!

Kaitlyn did the cutest thing tonight! I was snacking on Wheat Thins. She came over and snatched one out of my hand. Then she put it in my mouth! Very interesting! She then kept doing it. I had to hurry to swallow so she could put more in (funny what you do for your kids).

This is huge for us - she doesn't put anything in her mouth. So seems kinda significant that she would even put something in someone else's mouth!

Mommy and Me

October in the Red Room

Here are the latest pics from daycare. I liked this one because she seems to be playing with another kid (although he doesn't look like he is having fun) and I've never seen her play with a shopping cart!

And look at this smile - she loves the ball pit!

Here she is again playing with another kid - and it is a girl!

A box? Looks fun. Birthday idea...?

An adorable yellow crayon!

Kaitlyn had a fun filled Halloween. She had a party at school so Eric and I joined her in the afternoon. We hung out and played on the playground. Then they had a parade where the kids walked around and showed off their costumes. It was really neat seeing Kaitlyn playing at school. She looked very happy! She didn't really enjoy the parade... maybe next year.

After we left school, we stopped by each of the Grandma's houses to show off the costume. From there we went home and took a trip around the block in her pink car. At that point there weren't many kids outside but she did enjoy the ride. She was completely tired though and was asleep by 7:10! Hopefully next year we can really go trick or treating! Here are some pics from school:

Parent Teacher Conference

On Friday, Eric and I met with Kaitlyn's teacher, Miss Heidi, for a routine conference about how Kaitlyn is doing at school. The main focus was her development. We heard lots of things that came as no surprise to us:

- She's not eating solids
- She's not feeding herself
- She's not talking
- She's not napping well at daycare (this one is a little surprising because she naps so great at home, but we had already heard that she wasn't really sleeping much at school)

It wasn't all doom and gloom. We talked about how happy Kaitlyn is and how she is warming up to the teachers (she especially likes Miss Melissa).

But, I must admit, I felt clotheslined when she said that she felt that Kaitlyn was behind in her cognitive development. Well, what exactly is she talking about? According to good-ole Wikipedia, cognition is "the scientific term for mental processes. These processes include attention, remembering, producing and understanding language, solving problems, and making decisions." I think in the case of an almost 2 year old, she is referring to understanding language and attention.

Miss Heidi indicated that most of the time when she gives Kaitlyn instruction, she does not seem to understand or act on it. At story time, other kids pay attention to the story, but Kaitlyn doesn't seem interested. And when they sing a song that asks for them to point to a certain kid, Kaitlyn never participates.

Miss Heidi then went on to compare Kaitlyn to a few kids she has had over the years who ended up being diagnosed with autism or aspergers. Wow, punch to the stomach. It is one thing to have a doctor indicate your child is showing some signs based on answers to a checklist, but to have her teacher say it?!?! I suppose I shouldn't be surprised. We are still scheduled for a full, extensive autism screening in a couple of months. But I guess I've been in denial - thinking yes, she is behind in food. And that is carrying over to language (the eating motions help teach you how to talk too). And sure, she has some "quirks" - but doesn't everyone?

Well, whatever comes of all of this - we love our little girl. And she loves us. Therapy, daycare - we'll do whatever we can do!

Cutie Pie

Here are the latest SmugMug photos. Lots of cute one's of Kaitlyn. Here she is sticking her tongue out. She has been doing that a lot lately.

And look - she is participating in story time. I think here she is making her "cheese" face. She squints when we take her picture, preparing for the flash.

Here she looks like she is really paying attention to the story!

Bubbles! Kaitlyn loves bubbles.


I love this buggy they have. So cute!

I've had some success lately with putting her hair up. So far I haven't been able to get the rubber band on tight enough and it doesn't last all day. But it sure beats having her hair hanging in her face.

And man, is she a teacher's pet - or what? She always seems to be close to one of them. I bet she is their favorite (of course)!

And here she is watching someone else play! Sharing! Hopefully she didn't steal the book right after this picture was taken.

Yeah, she is on the slide! She used to be into the slide but stopped for awhile. Looks like she enjoys it again!

Fun at school

Here are the latest photos from Smugmug. This one is a classic! Notice she has bark in her hand! And look at that hair! It might be time for a haircut, because she won't let me put barrettes in to keep it out of her face.

And notice the color of the ball here - her favorite, yellow. Hopefully no other kids try to get the yellow toys, because watch out!

Say cheese - I guess she spends some times up on the playground equipment.

SmugMug

The daycare offers a service where they take lots of pictures at school and upload them to a website. So I'm sure I'll be sharing lots of those. At first when I was flipping through the site, I couldn't find any of Kaitlyn. She is only there M-W-F most weeks, so I'm sure that contributes.


Here she was on Grandparents day. They got sprinkles to put on a cookie. She wasn't interested in the cookie, but was interested in playing with the sprinkles.

Here is why I think she isn't in many photos - she doesn't participate with the group. She is off to the side in this one during story time.

But surprise, surprise - she's sitting in a teacher's lap (rare occurrence). She looks like she is enjoying it!

Things Kaitlyn Has Picked Up at School

Kaitlyn has finished 5 weeks at school. Here are some things she has picked up along the way:

2 colds! During her 2nd week at the daycare, her nose got runny. She only ran a slight fever one night. Eric called a nurse help-line and they gave us some great tips on how to suction her nose. That is never fun, but it sure does cut back on what comes running down her face. And since she hates to have her nose wiped... I guess you pick your battles. I don't think she was over the cold a week and it seemed to come back again. Oh well, we knew this was coming.

A bite!! One Friday when Eric went to pick Kaitlyn up, they let him know that one of her "friends" bit her! Apparently another child was playing with a book that made noise. Well, Kaitlyn loves toys like that. So she proceeded to walk over and push the button so the book would make noise. This kid rewarded her by biting her in the arm!! I should have taken a picture. We could have identified this kid using the mark he left on her arm (I'm just assuming it was a boy)! You could see the entire mouth on her poor little arm. At least it didn't break the skin!

Red clothes!!! Kaitlyn has gotten to "paint" at school. The first time she did this (to make cute hand print cards for grandparents day), she had it all over her dress. I didn't think too much of it because I figured it must be washable. But hmm, no luck. Maybe they can tell us in advance when they are going to paint and I'll send her in that same dress?!?! Oh well, she had already gotten a lot of use out of that dress.

She also has learned to kick her toys. If you stack blocks for her, she walks over and kicks them over. Kinda cute. And great for her future as a soccer player ;)

On the bright side, she has learned to sit at a little table and eat her meals. We ask her if she is ready to eat and she runs over to the new little table we got for her, climbs up in the chair and is ready to go. And good news is she now lets her teacher feed her. For the first couple of weeks the poor girl came home super hungry because she wouldn't eat at daycare.

She seems to love it. She doesn't cry when I drop her off anymore. She seems super excited to get down and get playing. Gotta love it!

Houston Trip - August 2011

In August we made a trip to stay with Aunt Denise and Cousin Lauren. It was our first trip out of town with her in quite awhile, but she did great. On the way to Houston, we got in the car right after she ate lunch. Our plan was that she would nap most of the way. It started out as predicted - she was asleep soon after we left San Antonio. But an hour into the trip, she stirred and woke up. Then she was up for the rest of the ride. Oh well, we put in a DVD and she was entertained.

On Saturday, Uncles Scott and Russell came over and Kaitlyn got some pool time in. Here's some pictures of her splish-splashing around.

On the way back to San Antonio, we knew better than to plan for a long nap. So we headed out a little earlier. We stopped to grab lunch when we were halfway home. I fed her and then expected a little bit of a nap. Wrong again! No nap. Oh well. She was still great in the car.

Recently Kaitlyn has started to really appreciate her "blankie!" She'll often grab it in the morning and carry it with her as she starts her day. And she has been cuddling up to it at night and even using it like a pillow. So cute!

Candid Family Photos

Here's some recent candid pics of our family. Self portraits are always lovely - especially on a cell phone!

And here we are tuned into Kaitlyn's favorite show, Wheel of Fortune:

Playing with Kaitlyn

I thought I would share some recent pictures of Kaitlyn. Here she is in her pjs one night after her bath. Doesn't she look tall? She has definitely shot up.

And another night in her Elmo pjs. We like to run around and rough house in the evenings. She giggles and squeals. Such a cutie.

Here she is playing on the Ipad. She plays with this Talking Tom app - the kitty repeats the laughs and noises she makes. And when she touches the kitty, he purrs. She gets a kick out of it!



And here she is in the bathtub. She has started to dunk her face in the water. She gets the front part of her hair wet and lets the water run down her face. Look at this face!

Daycare update

So Kaitlyn has survived 2 whole days of daycare. Her first day was last Monday. Eric went to work late so he could help get her to school. Kaitlyn woke up when she normally does at 7. However, we tried to feed her breakfast right away. She was very confused and upset by this change in routine, so she wouldn't eat. Instead we gave her a bottle and put her in the car. We attempted to try and feed her again in the car before taking her inside but no luck. Not a great start.

I got flustered when we went to check her in. I had to set up a username and password. Each one was 6-8 numbers on a keypad. I had a hard time coming up with something. Kaitlyn was getting antsy and there was a line behind us waiting to get in.

Once we got to the red room, we put her down hoping to let her ease her way into the activities. But she wouldn't budge from the door. She wasn't happy when someone needed to come inside and I had to move her. The teacher tried to help us get out the door by picking Kaitlyn up. But we failed to let Miss Heidi know that she doesn't always like to be held. So this only made her more upset. We decided it was just best if we said our goodbyes quickly and left.

A coworker has a child that is in Kaitlyn's class. He dropped his daughter off about 30 minutes after we did, so I got to hear what she was doing. I was pleased to hear from him that Kaitlyn was no longer crying when he saw her. However, she was hanging out by the door and not playing with the other kids.

We went together at 4:30 to pick her up. We peaked in the front window and there she was - wandering by the door. She looked rough! Like she had a tough day. The poor kiddo didn't even smile when we came in the door. She just turned and was ready to leave. Miss Heidi reported that the day went pretty well, considering it was her first day. She said there were some tears, but not the whole time. And she slept for an hour on the cot (no idea how they got her to do that)! However, she didn't eat all day! Poor kiddo. Only drank some milk. Not good. And her stridor was noisy from all the crying she did that day.

Needless to say, she was so hungry and thirsty when we got home. Ate a ton of food. But recovered nicely and was back to her happy self. All in all - her first day went as good as could be expected.

Her 2nd day at daycare was a little better. Still tears and no food. But Eric said she looked much better when he went to pick her up. She was very happy to see him. And my coworker reported that when he saw her in the morning, she was hanging out by the back of the room looking out the window watching kids play outside. Much better than hanging out by the door!

First Day of "School" - August 22

Kaitlyn starts daycare a week from today! She will be going to Rainbow Station, which is right across the street from my work. The plan is to start with a part-time schedule: Monday, Wednesday, Friday. We'll see how it goes. We have never left her with anyone outside of our family, but we know she'll be fine! She is going to have a blast with all of the other kids. I'll be sure to post an update.

Hi!

Last Thursday, Kaitlyn said "Hi" when Eric picked her up after work. She has this ritual when we walk in the door. She turns and runs to the backdoor. Then will turn around and run into our arms. At that point, she said "Hi." I missed it, but my mom, dad and Eric all agreed she said it!

Seaworld Sunday

We went back to Seaworld on Sunday for some fun in the water and sun. Kaitlyn had a blast. We were only there for about 2 hours, but she ran (and I mean RAN) the entire time. So needless to say, she was pooped when it was time to go. Here are a few snapshots from the great day: