Wednesday, March 28, 2007

Walking videos

I'd recommend viewing the following walking videos in order (scroll down and watch the ones I posted first, first). That will show has Katilyn's walking skills have increased dramatically over the last few weeks and since she's gotten her glasses.

walking with glasses

Pictures of Kaitlyn's Glasses

Here are pictures of Kaitlyn in her new glasses.
The first day of Kaitlyn's glasses.

Chewing on a feeding therapy chew tube

Wow, I really love my Prevacid. I put the medicine insert phamplet inside and she loved shaking the box all around - oh, the simple things in life!

Kaitlyn's bangs are getting really long, and the clips don't seem to stay in long. So today I tried out a pony tail! Brian thought she looked like an acorn.

A bit closer up view of glasses and pig tail

From my trip to Tahoe. What serenity, watching the sun set over Lake Tahoe. Beautiful!
Kim, our Tahe Fire fighter friend and I taking a "break" from skiing with some liquid refreshment
A self-portrait of myself skiing on the 2nd day. Lake tahoe is behind me. What a beautiful spring day of skiing. It was close to 60 degrees that day!
Dad and Kaitlyn on the swing (feeding tube attached)

What a huge meal!

More stable walking

Learning to Walk

Water Under the Bridge

Taxes, Work, Therapy Appointments, Doctor Appointments, Dentist (for mom) cleaning up vomit… Everything gets in the way of my blogging!

So sorry for the long delay, my taxes are in, my monthly work newsletter is finished, I have 2 new escrows at work, and I’ve hired a full-time nanny.

It’s strange how you can have a horrible, horrible week, and then things look up.

Last week recap:

I had been to the dentist earlier in the week (Tuesday) and while getting shot with Novocain the dentist hit a nerve in my tongue. It hurt like crazy (like an electric shot) when it happened. I didn’t think too much of it until the next morning when my tongue was still numb! Yes, the next day. I searched online, and discovered that this can happen when you hit the nerve in your tongue. I called the dentist and said, oops it happens, I asked if it could be permanent? He said he’d never had it happen permanent, but it was a small possibility! It’s now 1 complete week later and it’s still horribly tingly. I keep biting it all the time. I really don’t want to eat anything. It feels like your tongue is burnt by hot coffee. (My father in law, who is a dentist, said it’s good that it’s tingly and not numb any more, as that means it’s healing, but it could take months!) Talk about being depressed. It is horrible!

Brian was gone all week. One night last week I “fed the bed”. Kaitlyn’s gutbe has 2 opening ports on it and one of them sprung open. I had used the pump to feed 13 ounces of formula into Kaitlyn and none of it went in her belly, instead it went all over her bed, the floor. It made a horrible mess.

Late last week (Friday) was the last straw. I worked very hard and spent a LOT of time with some clients and they ended purchasing a home out of my area. It was very disappointing, as I spent so much time with them (I don’t ever let my clients know what a sacrifice my time is, as that’s part of my job), but it was very frustrating when I found out that they had already decided to purchase a home out of the area and were still looking at homes with me. In fact they found out that they got the east bay house while they were in the car with me and didn’t even tell me then.

I tried a feeding session with Kaitlyn that evening, (what was I thinking) and had a complete break down. Kaitlyn refused to eat or drink anything, and instead had a huge vomit. I chased her around the house with a syringe full of her food, vomit all over me, my shoes, the floor, the food exploded all over when I was trying to push it in her tube (like it often does) and had a complete crying break down. Poor Kaitlyn looked up at me all scared as she couldn’t figure out what was happening to mom. That really broke my heart, but I couldn’t stop crying. I was feeling very sorry for myself.

Everyone tells me how strong I am. I guess they don’t see me on days like this.

This week things have been looking up, somewhat. I did get a moving violation yesterday in my car! Ugggh.

Well, water under the bridge, I do at last have 2 new clients in escrow this week. (Remember that I can help you with any real estate advice/questions/transactions ANYWHERE in the Country. I have a great network of Real Estate Brokers that I turn to.

I did end finding an absolutely wonderful nanny to help with Kaitlyn. She’s been with us now for almost a month. Remember when I said my instincts knew that my previous nurse was horrible? Just the opposite that I felt this time, I knew it was right the moment she walked in the door. It is such a relief knowing that Kaitlyn is in good hands. Our nanny just loves Kaitlyn, is so wonderful with her and is helping me with laundry and basic house tidying also. It’s so nice to come home and have the house all picked up! I feel so fortunate and lucky and after the night mares I had to put up with.

Kaitlyn got glasses! I think I mentioned in a previous post that her eyes are -4.0 in each eye. The doc didn’t feel she would wear glasses, but I pushed the issue. I’m sooo glad I did! The first day Kaitlyn wanted nothing to do with them, and so I didn’t try again for a few days (I was sort of dreading the process), but the 2nd time I put them on her she kept them on the entire day! Within a few hours she was taking more steps on her own, and seemed to be smiling more too! WOW oh wow!

I guess she really needed glasses and likes wearing them. Now when I take out her glasses I show them to her and she gets a big grin on her face! It’s so wonderful to see her smiling and interacting more. And her walking has really taken off. Every day now she is willing to venture off across the room on her own. It’s so wonderful to see.

Eating update: Some ups and downs. A few weeks ago I was able to hold a Gerber Star (they are like cheerios but dissolve even faster) to her mouth and she chewed off one little piece of the star. We are talking one tiny, itsy bitsy little piece. This causes gagging, wretching and vomit, but eventually, after about 6 bites she ended up eating the whole thing. After a few days of this we finally got one to stay down.

Last week Kaitlyn actually put a Gerber Star into her own mouth!! WOW, this was a cause for lots of clapping and cheering! Now, she tends to gag whenever anything is in her mouth. After lots of distracting, more cheering and clapping, she actually managed to swallow it. Then a few sips out of a juice box! (She’s very good at squeezing the box which makes the juice squirt out through the straw and gets all over her, me and everywhere else), but she will occasionally swallow a few sips too.

Wow, she’s a regular eater! (Well not really, but hey, we learn to celebrate the small things in life, right!) My daughter ate 2 stars and had a few sips of juice! Wowweeee!

OK, if you are a parent of a child who eats regularly, this has to sound so completely foreign to you. She took by mouth probably the equivalent of 3 calories and I’m jumping up an down.

The last few days haven’t gone as well. Her vomiting seems to have increased (no idea why). We were trying to increase the time that we push her feed and the volume, as I’m trying to get her off her night feeds. Maybe that’s increasing the amount her little tummy can handle.

This morning I almost had a major catastrophe. I got her up, disconnected her extension set (that’s the short tube that attaches to her Mic-key button in her belly). I changed her and brought her out to the kitchen. When I reached down to re-attach her tubing, I couldn’t find her button, I thought I kept seeing her belly button! But alas, no her mic-key had fallen out. It had only been about 15-20 minutes since I had last seen it in her.
I’ve changed her button many times in the past, and it’s not that big of a deal, but I’ve been told that if you wait too long the stoma the hole in her stomach (like an earring hole) can close up! I rushed around, found the extra gtube and tried and tried, but I couldn’t get it to go in. Kaitlyn started screaming. I was alone at home. I really was freaking out thinking oh now, we’ll have to have it surgically reinserted again, the anesthesia, hospital, oh now. I can’t get it in. She was really screaming now. I was really pushing, hard.

Finally it went in. Phew. Poor baby. Poor mommy. But we saved her from having to have surgery again.

The balloon inside her belly had sprung a leak. (for those not in the gtube know-how: There is a tiny silicon balloon that inflates/deflates with water that is inside her belly. That’s what keeps the g-tube in her belly. It’s filled with 4cc’s of water and it sprung a leak, so it’s just slipped right out. The button had fallen into her pj’s and I hadn’t even noticed it. If it had happened over night, not only would I have fed the bed with her food, but it would have definitely have closed up.

I think that’s about it. I’m working on walking videos, but I’m going to get pictures and videos up tonight! Yeah, finally!

Friday, March 16, 2007

Helping to Save Babies - asking for your support.

It's hard to believe that Kaitlyn has been home with us for over 13 months now and is just about walking on her own. It seems like just yesterday that we decided to walk and raise funds for Premature Birth Prevention with the March of Dimes. This year our daughter will be able to walk on her own (well at least a few feet!)

We will be definitely walking again this year and I once again asking for your support in helping me raise money for this great organization.

Did you know that it is due to the research efforts of the March of Dimes that Surfactant is now used and given to premature babies to help their lungs? It's likely that without the efforts of MOD that my daughter Katilyn wouldn't be here with us today. Sadly, surfactant was used on Corinne too, but because she had gone so long without amniotic fluid her lungs just weren't strong enough to survive.

I'm asking for lots of help:

1. If you live in the Bay area and would like to join our family team on the walk, please let me know! We'd love to walk as a group, or with other local preemie families.

2. Are you artistic or a graphic designer? I'd love to have t-shirts in honor of my beautiful daughters for all those who choose to walk wiht us - but my artistic skills are quite lacking - I'd love to have you help us with a t-shirt design! (I'll send you a finished one of course as a thank-you if we choose your design).

3. Lastly, if you can, we'd love if you could donate to the March of Dimes to support and walk in honor of our beautiful twin daughters, Kaitlyn Elizabeth and Corinne Margaret. Last year, with just 2 weeks notice, I set a goal of raising $1,000 and I quickly doubled that amount! This year, I've set the bar higher and am hoping to raise at least $2,500.

The mission of the March of Dimes is to improve the health of babies by preventing birth defects, premature birth, and infant mortality. Did you know that premature birth is the leading cause of new born death in the first month of life? It affects 1,305 babies a day in the United States. Those who survive may have lifelong health problems. And premature births are on the rise -- up to 27% since 1981.

That is why I am asking you to support me in March of Dimes WalkAmerica. Because premature birth can happen to any pregnant woman. In nearly half the cases, the causes are unknown. The March of Dimes is leading the way to find answers by supporting research into the causes of premature birth. I am joining the fight, and so can you.

Your support helps fund:
-Research into stress and other factors that may trigger preterm labor.
-Programs to educate pregnant women to recognize the warning signs of preterm labor.
-Tools to help health care providers find better ways to detect women who may be at risk for preterm labor.

Please join in and help fight prematurity. Visit my webpage and sponsor me in the Walk that saves babies!

Thank You!


Here's the link to make a donation online or to register to walk with our family team:

San Francisco March of Dimes Walk details:
4/28/2007 9:00 AM - The Airfield at Crissy Field, San Francisco
Across from Stilwell Hall
Mason St and Crissy Field Ave

Tuesday, March 13, 2007

Kaitlyn had a terrible lung infection

I’ve got to start on my taxes, so I have to keep this short.

Kaitlyn actually became very sick last week with a respiratory infection. This was our first really bad bug that went directly into her lungs, and it certainly reinforced to me that she does have Chronic Lung Disease. She started coughing one night and by the next day, it was horrible, wet thick coughs. I started her on inhaled Abuteral treatments as soon as she started coughing, but by the 3rd day, it was so bad we went to the doctor and Kaitlyn was put on oral steroids. They didn’t seem to be doing much until her 2nd dose when by the afternoon she started sounding much, much better.

We dont' know what it was, she was swabbed for RSV, but we don't have the results back yet.

I thought for a while that she might have to go the ER, but thankfully that was averted.

Unfortunately all the phlegm and much created her to have horrendous vomiting issues, and she lost an entire pound of weight. She had been so close to 20 pounds for a month or so and now she weighs only 19 pounds. Every pound has been such a success for us that this is very disappointing.

Of course Kaitlyn got sick when she did – she must have inherently known that mom, dad and Kaitlyn were going to go on their first real trip together (since going to LA last November) up to Tahoe, and mom and dad were going to take turns skiing. Once Kaitlyn started improving, Brian really wanted me to go on my own to Tahoe, as he’s had quite a few fun trips up to the mountains, so I ended up going to Tahoe last Thursday – Saturday.

I had a great wonderful time, I got 2 days of skiing in and went to a concert at Squaw Valley to see Donovan Frankenreiter (a singer that sounds a lot like Jack Johnson). I had a great time, and of course this incredible spring weather has set in so I skied in practically a t-shirt on Saturday!

Kaitlyn is taking many, many steps unassisted now, but still prefers to walk with walls/furniture or my assistance. She is so cute learning to walk, she holds up her hands and toddles about (hence the name toddler that I understand now) like a drunken sailor.

She’s also taking a tiny bit my mouth (we had quite the setback with the illness) but are starting to move forward again now. She’s actually sipping juice out of a juice box/straw, and today ate almost an entire star (like a cheerio but dissolves quicker).

However, what usually happens as soon as she gets anything in her mouth, her very active gag kicks in and we loose everything that we just pushed into her belly – very frustrating especially with her recent weight loss.

But I can attribute the recent interest in food (I’m hoping) to her diet change – as we are continuing the Blenderized Diet – which is real flood in a super-duper blender.

That’s it for my update today.

I’m working on putting together some walking videos.