Wednesday, May 30, 2007

Katilyn is Talking Video

Great developmental news and SMILES!

Today was Kaitlyn's 18 month NICU Developmental follow-up.

Actually, I've started feeling really positive in the last few weeks as to Kaitlyn's developmental progress. I feel I'm a bit afraid to jinx it or something, but Kaitlyn is actually talking! It's very faint, and most words sound fairly similar. but Kaitlyn is talking (which means communicating) and her signing has increased a lot too.

Maybe Kaitlyn knew how scared I was getting from my post a month ago and she knew she had to get "going" as mom was getting really worried.

At her NICU follow up she was only delayed in most areas by a few months. We were ecstatic. I sadly couldn't go as I've been swamped at work. I'll have to wait to read the report when we get it...but Brian was really, really happy.

I also captured a few rare smiles today. She's been smiling a lot more lately. Giving me kisses whenever I ask for them. My heart is just swelling of this webpage...can you feel it?

And, drum roll please, it's been 3 days since she's vomited! This is an all time record.....3 whole days, wow this is what it feels like to not clean up vomit all the time!

Here is Kaitlyn's signing vocabulary:
-hat, phone, dad (the last 3 are all the same, they aren't supposed to be the same, but K signs them the same),
-drink, eat (ha- funny that she knows these 2),
-bird, duck (she signs these 2 the same),
-all done, (but she doesn't sign when she is all done or wants more)
-she just picked up baby 2 days ago.

Here is Kaitlyn's verbal (quiet, but YES verbal) vocabulary:
The whole "talking" thing happened so nonchalantly, I didn't really realize what a huge accomplishment this is and how much she had actually started saying.
-mama, (she's finally calling me mama instead of papa!) Yippee
-apple (very hard to explain how she makes this word sound, she says: "app"then she breaths in to make the "uple" sound, I can't make the sound myself, I have no idea how she does it. You can hear it yourself on the video.
She will also really try to imitate many words we say, they all sound similar when she tries, but she really is trying, this is great news.

Have to keep this one short, but wanted to share you the good news.. I"m going to post a video too, it's poorly lighted, but it's really wonderful to see (and hear!)

We've got a way to go in terms of pointing and her averting her gaze from us...but we are heading in the right direction. The NICU follow-up feels a lot of her delays may be from her vision issues, and her glasses have started helping her for 2 months now so she has a lot of "catch-up" to do from all the time she couldn't see.

Be prepared for some AMAZING smiling beautiful pictures below...really, prepare yourself..first the old standby serious girl face:
Then swimming with my dad this weekend:
Then just a few hours ago, playing with a toy that really makes her smile...get ready......

and finally........My heart is swimming as I look at this picture (I'm guessing you, my loyal readers will feel the same way):

Saturday, May 26, 2007

Mic-key party!!

100,000 page views!!
I just realized that my blog counter just hit 100,003!!

Hard to believe that so many of you check in on our story regularly. Don't forget to let us know who you are if you haven't signed our guestbook post yet.
Guest Book

on to the Mic-key party:
Well, we finally planned our first ever gathering of all our tube-fed kiddos for a play date. I belong to a tube feeding support group in San Francisco. 5 of us moms have become very close friends, leaning on each other for support, ideas and understanding.

Sadly, one of our moms, Sara, is leaving next month - Her husband has a job transfer to St. Louis (so any St. Louis readers out there, let me know!). It was hard to schedule but we finally arranged a play-date for our kiddos. We met at a park, but typical spring/summer San Francisco style, it was windy, foggy and basically freezing, so we impromptu went to one of our members house (Heidi) for the gathering.

Not an easy feat, but we captured a picture of all 5 of our kiddos: Mitch (3.5), Tyler (2), Jake 2.5), Kaitlyn (1.5) and Elizabeth (1.5):
Trying to get all 5 showing their mik-key g-tubes was even harder!
We at least got 4 on the couch at the same time, showing off their buttons. Can you just imagine the room, we were all sitting around, with syringes, food, burp cloths. What a party! :)Here we are, a group of women I admire very much. Judy (Jake's mom), me (Liz, Kaitlyn Elizabeth's mom), Elizabeth (Tyler's mom), Sarah (Elizabeth's mom) and Heidi (Mitch's mom). If you didn't catch on, Elizabeth is a common theme with our names. Thank you my good all mean the world to me..thank you for all of your support and understanding.... and we'll miss you terribly Sarah! You better keep in touch!

Kaitlyn has suddenly realized that she no longer likes her mom to leave. She's suddenly become very clingy to mom and cries when I leave her - even if I go to the other room and shut the door. Here's a few pictures to show you the tears. I have to say I'm not complaining, Kaitlyn never really has shown much bonding with me, so this brings joy to me (much to dad's disappointment). When Brian comes home from work now, Kaitlyn runs to me and begs to be picked up.
Look at the pouty face. Breaks my heart!
And of course tears (remember that the crying is quite silent with her vocal chord paralysis)
Taken on Thursday. We went out as a family to the Farmers Market which is on Thursday evenings. We stopped for a quick refreshment. Typical serious face for Kaitlyn.
Dad giving Kaitlyn some love.
Kaitlyn (looking at dad's lips not eyes which is typical) likes to imitate fish faces.
Best news of all, though, is that Kaitlyn likes to give kisses!!! When her little lips brush across mine with a kiss is the most wonderful experience I could have ever wanted in my life.

Happy Memorial day weekend. Please be sure to think of all those who have given their lives for our country, and for all the angel babies up in heaven with them.

Wednesday, May 16, 2007

Happy Mother's Day!!

My 2nd Mother’s Day:

My dear husband came home from work on Mother’s Day with beautiful tulips, a wonderfully sweet card and a picnic lunch.

Ok, maybe this is too weird or personal, but Brian’s card to me was so sweet I had to share:

“Dearest Lizard,
I cannot express enough how special you are to me. You are such an incredible giving person. Our daughter and I are sooo lucky to have you looking over us.

All of Kaityln’s progress is due to you and all your efforts – she could not have a better mother. You continually impress me with all that you do for us. On this special day, I just want you to know that I could not ask or even dream of a better mom for Kaitlyn. Oh yeah, and not too shabby a wife either! Love Your Husband.”

I had to show a house in the morning first, but then we went down to the beach to have a picnic lunch. This was Kaitlyn’s first experience at the beach.

Boy, did she HATE the sand. (once again a typical sensory issue). She didn’t’ like even walking on the beach towel, she insisted on climbing on top of me (she rarely climbs on me). Eventually I put her shoes back on and she finally (with much trepidation) ventured onto the sand. After awhile, I took her shoes off again and she felt ok this time about walking barefoot on the sand. (I spoke to Kaitlyn’s PT about this and she said it’s exactly what therapy you should do with someone with sensory aversions). But she felt positively that she did go onto the sand. As super strong SPD cases would never go onto the sand even after all the processes that I went through.

I have to say that picnicking on the beach with a toddler is NOTHING like the nice relaxing picnics Brian and I used to have. It was not the least bit relaxing actually. The beach wasn’t all that warm (typical for northern California), and with the sand and the very active toddler, and the feeding tube it was a bit crazy actually. But it was nice to be outside, not working and enjoying our daughter for Mother’s Day.

Happy Mother’s Day to all of you too!

Kaitlyn “flunked” out of feeding therapy.

Well, I guess our progress of a month ago has gone away entirely. Kaitlyn is now refusing again to eat anything. She’s at least drinking a bit of water and/or juice.
Kaitlyn’s feeding therapist suggested there really wasn’t much more she could do (I agreed) and that Kaitlyn should probably be seen by an OT who has some specialty in SPD (Sensory Processing Disorder), as her feeding therapist agrees with me that there are some sensory based issues taking place.

Just like so many of my faithful blog readers have suggested. (Thank you for all of your comments by the way, I read each and every one of them, I’m sorry I just have been too swamped with work to respond lately). I’ve gotten the 2 bible books on SPD and don’t see Kaitlyn fitting into the neat categories that describe the different types of SPD. Not sure exactly what that all means. Maybe she’s still too young to tell. Maybe her behaviors are just toddler behaviors. Maybe it’s a degree of both. Who knows.

I have been contemplating taking Kaitlyn to an inpatient feeding therapy (well at least researching them), as I feel she needs some intensive longer-term therapy to get over her oral aversions (or complete refusal to eat).

Some good news to share: I posted that Kaitlyn failed her feeding therapist onto the Micro Preemie Support group that I started.
And Emily (one of our members) responded with a clinic program that could come to the house! I immediately went to the website: and discovered that they do travel to California. I contacted the organization and the founder/Dr called me and I then discovered that not only did they travel to California, they were actually moving from Texas to California… AND…..They are moving to Marin County, which is where I leave. Their new office will literally be less than 5 miles from my house! Wow!

I already have an appointment for the first step, for the Dr to come to my house to do a long evaluation, and then follow-up with an intensive 4-5 day program. I hope and pray that I can get my insurance to cover this….I don’t have a choice, Kaitlyn HAS to take part in this program….no matter what the cost.

I am soo excited I can hardly stand it. I liked the program as they work within our environment, they look at the whole picture of the child (sensory issues, autism, medical, psychology), everything. This is EXACTLY what Kaitlyn needs! I’m thrilled.

Our evaluation is mid June. I cant’ wait!

A funny thing happened today. My nanny came home from the park and told me that she met a mom there who knew Kaitlyn because of this blog! She knew Kaitlyn had a twin sister Corinne. If my fellow park-goer is reading this, be sure to comment here on my blog!

Some Pictures to enjoy!

Brian plays hockey with the San Francisco Fire Department Team. I took Kaitlyn to watch a few weeks ago. I felt like I was in the TV show: "Rescue Me" A firewife, watching the fire department team with other fire wives routing the team on....
A picture of the fire wife and daughter routing dad on.Well, I guess it's not ordinary fire wife stuff. See all the specks on the glass? That is Kaitlyn's food. As I was trying to push her food into her gtube, it got clogged and back-fired all over me, Kaitlyn, and the glass. If I wasn't so embarrassed (I hadn't yet met the other fire-wives), I would have laughed more. I was COVERED in food. It was all over my face, clothes, everywhere! Ugggh.. Hey, at least it wasn't vomit!!
Kaitlyn LOVES to put things on table tops. Here she is with her shelf (we had to move the phone book and other items that used to sit there). She's helping me with my real estate papers. I'm not really sure why both her tags are sticking out, her pants are rolled up as they are too long, as she' too little.
Here she is carrying around her bag of Flax Seed. (This is an ingredient to her Real Food Blenderized Diet that we feed her)
A close of up the flax seed.Kaitlyn has taken a liking also to this small pillow. She loves to rub her face and head on it any chance she gets. The bag of flax seed and the pillow are both a bit heavy and we caught her walking around carrying both - it was very funny - she's always very busy.

Mother's Day at the beach. This is typical Kaitlyn form. Not wanting to be held, squirming to get away. This was after she climbed up on me as she didn't' want anything to do with the sand.
Squirmy Kaitlyn.
Much happier cruising around
Mom and Kaitlyn on a walk with her Easter egg.

A close up of Kaitlyn and her dad.
Maybe some day Kaitlyn will become a surfer chic!
Feeding Kaitlyn on the beach. Not an easy task.
Dad is "pushing" food here just as Kaitlyn is trying to make a get-away.
Not really a fan of her hat. This was the best Mother Daughter picture we could get on Mother's Day.

Wednesday, May 02, 2007

Feeling down and depressed

Want to know why?

I'm really quite convinced that my daughter has serious developmental issues that the many therapists she sees seem to gloss over, "she's doing so much better" they say. I don't think I'm imagining this.

Here are some things I notice regularly:
Kaitlyn is almost 16 months adjusted

-She has never pointed or indicated that she wants something- ever
-she doesn't try to get me to help her - ever
-Although she will smile and walk towards me and say "papa" if I come in from outside - as soon as I pick her up she refuses to look at me and arches and wants down
-She often likes to rub or bang (not very hard) her head against things, this makes her smile sometimes
-She walks around repeating sounds, like "hmm,hmm" over and over and over, more of a whine that baby gibberish
-it is very hard to get her to look at us
-she still really doesn't like to be held- she becomes very agitated and upset
-babies /toddlers I see when held by mom hold on to mom, kaitlyn really doens't hold on to me-
-she'll usually respond to her name (a very good thing, as this is a big autistic trait) but there are times when she completely igornes you (this seems beyond just toddler tuning out to me), it's like she has no idea you are right next to her calling her name repeatedly

That's all I can think of for the moment.

In a month she has another NICU developmental follow up.

Here's a link that will show you why I feel sick to my stomach.

Enough said.

Tuesday, May 01, 2007

March of Dimes Walk

This is the only picture I have right now of the March of Dimes Walk in SF. (My friend (in the background) took more, but I don't have them yet). I forgot my camera in my RUSH out the door. I left my house 30 minutes before I was supposed to be on stage and talk! I made it, but boy was I stressed. I took this picture with my camera phone of Dad and Kaitlyn on the city streets of SF on a rare sunny day.

The talk and walk were great, I teared up a number of times, how embarrassing, but everyone said it was ok, as it made the emotions and reality of having and loosing a preemie a reality.

More soon!