Friday, October 17, 2008

October Update

So much has happened, so little free time!

Let’s see:

Brian's dad visited with us for about 10 days and then a few weeks later Brian's mom came out for another 10 days. Our house is too little to have them come at the same time!

A few weeks ago Kaitlyn got sick (welcome to preschool, always our fear, as Kaitlyn wasn’t allowed to be around other children due to her risk of illness). Not long after she got it she gave it to me and Quinn. I got 2 houses into escrow with work (a good thing, but unfortunately not much of a “maternity leave” for me). Basically things were very crazy and not much fun working, pumping and taking care of a newborn (sleepless nights).

Kaitlyn seemed to have come through the illness fairly easily. (we thought). Quinn on the other hand got very stuffy and couldn’t eat well, and had a fever of 101. After doing a lot of running around for 3 different doctor visits, getting blood draws and urine samples, it was determined that it was just a virus too. His fever went down and cold symptoms went away, but he was crying in pain, so we kept thinking he maybe had an ear infection (he didn’t), Our doctors office was great, but eventually it just went away on it’s own.

Kaitlyn and Quinn both had check-ups this week, and we found out 2 weeks later that Kaitlyn’s had gone into an ear infection (hence explaining why she’s been super cranky the last 2 weeks)! (She’s been on anti-biotics for 10 days now, but I think she still has a fever.)

Back-ing back up again, 2 weeks ago Kaitlyn had 2 developmental evaluations and her first dental appointment. Our NICU has a developmental evaluation follow-up for preemies. Her appointment lasted 4 hours and was mom cranky afterwards!

Here are her test results from a test that was given back in august:
(She was tested at actual age of 33 months, adjusted age of 30 months)
Visual reception - 26 months
Receptive language - 36 months - her strong suit!
Expressive language - 36 months also strong
Fine Motor Skills - 26 months
Gross Motor Skills - 25 months

Her NICU evaluation came back:

She was given a “Bayley” test, which I think is a fairly accurate assessment
Results: (again tested at almost 36 months actual/33mo adjusted)
cognitive age equivalency of 34 months
Receptive Language 34 months
Expressive Language: 37-39 months
Fine Motor: 28 months
Gross Motor 26 months
Other results: “difficulty attending to tasks without moving, increased activity level, sensory hypersensitivity with sensory seeking behaviors, decreased social communication skills and attachment. It is unknown how much Kaitlyn’s visual deficits affect all these areas.”

Then the results from the ridiculous geriatric neurologist (from the NICU follow-up):
1. Hypotonia (meaning: condition of abnormally low muscle tone)
2. Apraxia (meaning: Apraxia of speech, also known as verbal apraxia or dyspraxia, is a speech disorder in which a person has trouble saying what he or she wants to say correctly and consistently. It is not due to weakness or paralysis of the speech muscles (the muscles of the face, tongue, and lips). The severity of apraxia of speech can range from mild to severe.)
3. Low Vision
Atypical behavior due to 1, 2 and 3 above

Now I really dislike the neurologist who made the above evaluation, I personally think he is full of shit, excuse the language. But he is as old as molasses, and made his diagnosis in about 2 minutes, while Kaitlyn was tearing apart his office (after a 4 hour test). I disliked him the first time I met him when Kaitlyn was 6 months old, I too then thought he shouldn’t be doing this anymore.

Here were their recommendations:
See a Developmental Pediatrician
OT for sensory processing and motor coordination
continue speech therapy for communication skill and oral motor coordination
recommend PT
recommend special education or regular education with treatment for apraxia and low vision
be re-evaluated again before Kindergarten.

Kaitlyn will be going to the UC Berkeley Low Vision Assessment Program in a few more weeks (which was very difficult to get approved by my insurance, but finally the school district stepped up and is going to pay for it).

School evaluation:

The day before she had her Early Intervention school follow-up in preparation for her IEP. They had to stop testing her at level 5 because she couldn’t sit any longer (not sure exactly what level 5 means) as she was far beyond in many ways. She of course proceeded to trip over the curb (2 times) which showed them how she stumbles, falls all the time. She was hyper, but they were so impressed with how smart she was. In a way it was “disappointing” (isn’t that crazy) as my gut tells me something is up, but she doesn’t always show that side of her when she’s interested in things.

The good news is that she did qualify for special education and as all of her Regional Center therapists recommended. Everyone calls her a “different” case, she doesn’t fit into any of the regular boxes. She didn’t qualify for full-time special day school, just a speech class and a movement (OT class). In her 2nd day of speech class, (which I think is going to be great for her), the teacher commented that she may need more consistent days of school (more than 2 1.5 hr sessions) after seeing her for just 2 days, which validates that she tends to “test” well but that the evaluators didn’t’ really get to see her idysycroncy . The speech school will try to make her look at eyes when she talks, and clearly noticed her lack of abilities in gross and fine motor skills, as well as self-help skills, but commenting to me again that she’s very bright and different than other developmental delay kids.


Hmm, hard to explain exactly what is going on. Kaitlyn hadn’t vomited (until today) for probably close to 2 months! She unfortunately, however is loosing weight (which she’s never done before), she hasn’t gained weight since may 08 and is now moving backwards. I let up on forcing her to finish meals (which I think is what lead to the vomiting going away), BUT she’s just not eating very much.

I struggle with this Daily. Part of me so wants her to be a regular toddler that is a “picky” eater. Many toddlers don’t eat much, but then make up for it with a really big meal. The problem is that Kaitlyn never eats that really big meal. She’ll eat a “decent” meal every few days or so, but doesn’t eat enough to make up for the calories that she didn’t’ take in. She really doesn’t like to drink milk. We fortify milk with either cream or Carnation instant breakfast to get more calories in her.

When she does want to eat, it’s quite exciting to watch. In fact, it’s been so long since I posted but Kaitlyn had her very first McDonald Happy Meal about 2 months ago! Wow, isn’t that a funny thing for a parent to be excited about! Only those parents of kids with a feeding disorder can actually understand my joy, and the fact that we took pictures of the “Event!” Now she loves French fries, so ate an entire small bag of them, ate 1 chicken nugget and had about 2 sips of milk.

Kaitlyn had her 3 year check-up last week and I told her doc that I wanted to take out the gtube, the doc asked what our GI doc said (who knows I haven’t spoken to her in ages, as I’m really on my own in this task to get my daughter to eat). I suggested they speak, and they came back saying, no don’t take it out, do a 3 day food diary. Uggh. Haven’t done that yet, have been too busy.

Good news on one front, Kaitlyn HAS gotten taller, in fact she’s 95% height for her adjusted age and 50% height for her actual age. I felt good about that fact and was less worried about her weight, but I guess her BMI is still poor for the height /weight ratio and that’s what has the docs a bit worried. I can’t get any more food in her orally. I’d have to go back to giving her bonus bolus via tube, which I’m really, really fighting. How can we ever be done with the tube is she gets “used” to the tube. I was a skinny girl, maybe she’s just small. This is very frustrating!

We are closer to being a typical toddler, but she still isn’t very good at chewing, still prefers soft foods and can’t eat an apple or raw veggies, no way! Bites have to be very small, as she’ll gag on it, but at least now she often knows the bite is too big and will give it “back” to me, saying too big of bite.

Birthday Bash!

Wow, what a great time we had celebrating Kaitlyn’s 3rd birthday! 70 people came (over 24 kids), If you can believe it, it rained however (well, it did clear up by noon that day) but it was chilly and windy and the few days before (and after) it was in the 80’s. But it ended up being a wonderful party. We held it at the same park where we celebrated her first birthday.

To honor Corinne (before the kids did the piñata) I asked everyone to think for a moment of our beloved Corinne and how much we miss Kaitlyn’s twin sister. I could hardly get it out, I started getting really chocked up and that was that. I had ordered 1 white balloon that I was going to release, but it ended up not making it (I think due to the wind). I really wanted to memorialize Corinne more, but the moment was too emotional for me so it was brief. I think those who know me though knew how important it was.

Kaitlyn had a wonderful time, as you can tell by her pictures. She was in typical fashion very hyper and couldn’t’ sit still for a moment. She loved covering herself in party hats and fiesta beads, the more the better as far as K was concerned.

And the comments I received from those who know what Kaitlyn has been trough when it comes to feeding were so funny. They all loved seeing her stick her fingers in her cake (this was the first she’s ever done this) and eat goldfish crackers off the table. I guess she was an “eating” machine, she was snacking a lot and had a great time!

At her birthday party almost all of Kaitlyn’s grandparents were in attendance, what a treat: Grandma Corinne (my mom) and Grandpa Rich (from Los Angeles), Grandpa Poppy (my dad) and Grandma Mimi (from Los Angeles), and Grandma Mame (Brian’s mom) from Pittsburgh, PA. (Grandpa Gille was just out a few weeks earlier).

We even had a face painting and balloon lady-clown named star that was a big hit. Thank you everyone who attended, it meant the world to me and I know that Kaitlyn loved her party, she still keeps talking about the piñata and the candy, party hats, streamers and balloons.


Quinn is doing just fabulously! It’s so nice and amazing to be able to write that. He eats like a champ (From the bottle). I attempt to breast feed a bit, but he really doesn’t like it much and mom gets frustrated (due to the fact that I’m working and don’t really have a lot of free time).

Maternity leave? Not for me sadly! Not long after Quinn came home I became very busy with work (a good thing) and just closed 2 escrows this last week.

I’m still a pumping queen and have already quite a bit of breast milk stored up for the little guy. I really, really hate pumping though, have I said that before. It’s really what’s making my life difficult as of late, as it takes 30 minutes when I pump. I’ve just recently cut out a pump or 2 during the day (and went 8 hours sleeping at night recently too).

Quinn is up to 10 pounds (or just under at his last check-up). He does however have some fluid on one of his testicles that they are closely watching.

He just started social smiling. Kaitlyn NEVER EVER did this! It’s so wonderfully tear-jerking amazing to see. Wow, he’s such a beautiful, good boy and now that he’s smiling and interacting, I’m in love! I got my dream of a healthy, “normal” experience this time around and I’m loving it. It’s not really all that hard. It’s so easy to leave the house with him, I always feel like I’m forgetting things when I leave (syringes, vomit cloths, etc).

Now, he’s still eating every 3 hours (throughout the night too) and I’m extremely tired, but that’ what’s expected of an almost 3 month old newborn so you won’t hear any complaining from me!

On Friday last week I drove to Los Angeles with both kids and my nanny. I had to attend a conference for work, and my mom couldn’t take care of Quinn all night (he’s still up every 3 hours). I never much went anywhere when Kaitlyn was still tube fed and vomiting, as it was just too difficult, with all the supplies and the vomiting. Once I knew I could stop and get a happy meal for her I knew that I could start having a bit more freedom. However, it was hard to drive with a newborn who needs to eat every 3 hours. The drive was very long and once we were in LA hit some horrible traffic, so the drive ended up taking 11 hours! Ugggh!

I then spent 2 days away from the kids at a conference (meaning uninterrupted sleep for 8 hours for 2 nights in a row). Wow, I haven’t slept that long since I was hospitalized back in June.

I got h home last Tuesday night (well Wednesday morning) at 4am! Yes, how stupid am I. I figured driving at night would be easier on Kaitlyn (as she can sleep and I won’t have to stop and do marathon feeding sessions), but I got delayed, (it still takes forever to pack) and didn’t leave LA until 10pm. I was DEAD beat upon returning home and it’s taken me the last few days to recover.

Well, that about get’s you up to speed on everything.

I'll try to work on pictures soon!


Kristin said...

*pant* I'm tired reading that! Glad all is well Liz! hugs
K & P

Anonymous said...

See! How well she did!
Why did you get so much worried about her possible autism spectrum and other things?

Anonymous said...

As another micropreemie mom, I don't blame you a bit for worrying! And with the poor eye contact, not wanting to be held, reduced social skills, and various odd behaviors so many of our kids have, who wouldn't worry about ASD?

It's great that Miss K hasn't gotten an PDD diagnois, like a lot of micropreemies have, but the truth is babies like these haven't survived till recently and no one knows what the future holds.

Naturally, I'm hoping things just get better and better for her (and for you and the whole family) but don't worry about worrying!

liz.mccarthy said...

AND, I'm not done worrying. My gut still tells me something is "up" with her development (I won't say wrong, but she isn't at all like other 3 year olds).


Anonymous said...

Liz, thanks so much for bringing us up to date on your little ones. I have been wondering how Kaitlyn is doing in preschool. Sounds like she had a wonderful birthday celebration. She's a lucky girl to have such a loving family.

Vicki in Tennessee

Shannon and Carey said...

Your updates are always so informative. Thank you for that. I just laughed out loud when I saw Miss Kaitlyn on her scooter. Could she get any cuter? (She knows she's cute in that pic I tell ya)
I wish you all the best on her feeding. She has made a ton of progress. And yes, I was so glad that she's had a Happy Meal. I know it meant the world to you. It does to us too.
Just dropping in to say hello and to give out some hugs (((((((hugs)))))))
Squeeze Quinn's cheeks for me.
-Shannon in Austin

skeybunny said...

Hi Liz,

I love the pictures of Quinn & Kaitlyn eating her B-day cake!

I'm glad to hear Kaitlyn has an appointment at UC School of Optometry...I'm probably a little bit biased as I am an alumni, but I think you will get some answers about her vision. You had said she is having a low-vision assessment--is she being seen in the low vision clinic or in one of the pediatric clinics? There is an infant-toddler clinic and also a clinic called SVACH for children with special needs. If she is going to the Low-vision clinic, Dr. Robert Greer is excellent. Dr. Deborah Orel-Bixler is one of the main doctors in the infant-toddler clinic and SVACH clinics and is very knowledgeable in the area of pediatric eye diseases and vision problems. From my experience interning in both clinics, I would think the infant-toddler clinic would be better set up to see a three year old, regardless of level of vision (the youngest I remember seeing in the low-vision clinic was around 8 years old). Do you know approximately what her level of vision is?

Sarah (Evan's mom)

Anonymous said...

All three of my daughters were very tiny and still are. When one turned twelve is when she started to fill out. The doctors always said they were underweight and nothing I did worked. They are fine. Believe me. My 2 1/2 year old is only 26 lbs. But she is fine! She eats barely anything most days but then on another day she will stuff herself. Best of luck. Oh, and Quinn looks JUST like you!!!

Stephanie- long time reader

Anonymous said...

I just happen to stumble upon your blog. I am a mother to a 23 week preemie boy who is now 29 months. I share some of the same frustrations you do and some of the same problems with my baby as you do. You are quite informative with her progress and that is great. Just wondered being my boy is not talking at all yet not even mama or dada is that something you are going through as well?

liz.mccarthy said...

Sarah- it is the SVACH clinic at UC Berkeley, Kaitlyn's been there 1x already, I'm looking forward to this new visit.

And anonymous, last posting, you should join my micro preemie support group, as I know many can answer your questions there: the link to join is on the right hand side of my blog, micro preemie support group (or preemie blog moms as it's called)