I was a cool Mom today.

I figure that I'm a cool mom about once a month or so. Usually I do boring things like dishes and laundry, so I decided that since I actually did something fun today I'd better write about it. This is "Everett"... and Everett with Everett.

Everett and I made this scary-looking sock puppet today. He chose the buttons and yarn, and helped me cut things. He wanted the hair to be as long as his, and wanted to name him "Everett". We had a puppet show after dinner, which had the girls giggling hysterically. It involved lots of eating, burping, and "excuu-u-uuse me!" Here's a picture Everett took of me... and Everett:

Today was also Lana's first weekly therapy visit at the Children's Institute. It was really more of a consultation than therapy this time, but I'm encouraged by what I've seen so far. There was a point months ago where Lana would drink about 2 oz. per feeding with a straw (and every once in a blue moon she'd drink five and almost bowl me over), but we had a major setback after which she completely refused to drink anything by straw. Today we tried a Rubbermaid container with a straw, and Lana drank about 4 oz. of her Nutren--by herself! In less than 10 minutes! Maybe it was the novelty. Maybe it was the setting. Maybe the timing. Maybe we are being blessed, and she'll do it again! She's getting sick (Gwyn sounds like she might have croup), but we'll keep praying and see how it goes. We're hoping to gradually increase what she'll drink independently (and without movie distraction) and then completely eliminate syringe feedings. It's hard to believe that I've been feeding her this way for well over a year!

At dinner, Cary was teaching the girls about "guys" and "ladies". He had Gwyn look at pictures and say "Lady" or "Guy." Cary then told her that I was a lady. She said "No! Mama." And Cary isn't a guy either. He is most irrevocably "Dada" in Gwyn's mind. I guess we should feel really special. Gwyn has also decided that she's my buddy. I ask her if she's my sweet girl and she says "No! Buddy."

It's nice that the girls are starting to communicate really well. At snack time, Maddie informed me: "Mouth hurts today." I'm proud of my little talkers.

More!

It's been almost a week since I've posted! It's been a busy week, but I guess that's pretty normal. The biggest difference between this week and those preceding has probably been the weather. It has been beautiful this week! It makes me want to spend time outdoors, and work on things away from the computer more. It rained today and it smells so nice! It has been wonderful to have the windows open and experience the fresh air all day long. I loved the feeling in the air today--that feeling that's always there on a day it's going to rain.

I have pictures to post, but I'm going to save that for another day. For now, I'll just share some good news. During lunch yesterday, Lana said the word "more" three times!!!

Now that you've picked yourself off the ground, I'll tell you what she asked for: Broccoli, noodles, and water. She has loved water for a long time, but the others are new. I normally give her very small portions of everything. This minimizes waste and avoids overwhelming her. She finished all of the noodles I gave her and asked for more. She loves broccoli! This is a food I couldn't give her much of because she would throw it up twelve hours or so later, undigested. She is on a new medication that seems to be helping her, so I let her go at it. We had tried the medication (Erythromycin) before, but she would throw up every time we gave it to her--obviously not worth it. Erythromycin is an antibiotic, but given in smaller doses just serves to irritate the stomach and cause it to empty faster. She is now, unfortunately, taking four different medications. I am supposed to dose her 6-7 times per day. We've tried cutting down or cutting out a few times, each time with detrimental effects, so we're sticking with all the meds for now and look forward to the day when she is free of all of them! She is still only consuming about 60 calories of solid food each day, but she is making progress.

Counting Blessings

Well, now that the kids are in bed, I'll finish out my last post. This is probably going to be more of a post for me than anyone else.

I think this is the worst day Lana has had in over a year as far as her formula/Nutren goes. She ended the day having taken only 10.75 oz. She drank almost 8 oz. of juice on her own, but she is almost 300 calories shy of goal. I really hope that once she's feeling better, she picks up close to where we left off. On days like these, it really helps me to look back and think about how far we have come. This could be a long post!

In July of 2005 when she was about 4 months old, Lana finally completely refused to eat. She had gradually been showing more and more aversion. I never would have imagined that an infant would completely refuse to eat to the point of dehydration until I experienced it myself. We pushed through it and had her eating for a while, and then it happened again. I didn't want to go through the heartache again, and began feeding her in her sleep. I would wait until she was sleeping, gently pick her up, and she would suck in her sleep. We did this for six months. Needless to say, it was difficult. I had two other babies and a sweet little boy to care for. I had to be creative and stick to a tight scedule. But that's a long story in itself.

Near the end of those six months, she was ready to nap a lot less, and started to either not fall asleep or wake up when I tried to feed her. We had put off the inevitable struggle, but it was time to face it once again. I finally decided to try feeding her by syringe. At first I could only get her to take very small amounts, and it took a lot of distraction! I put on a Baby Einstein video and kept handing her toys and playing with her as I gave her about 3 mls at a time from the syringe. Gradually this became easier. We were also trying to get her eating baby food with her sisters, but she would only allow tiny amounts into her mouth. We kept trying, knowing that taste and texture experiences, no matter how small, would help her. If she allowed any food into her mouth, and especially if she swallowed it, we showered her with praise.

After a while, we got her to the point where she would drink some of her Nutren on her own from a straw. She would eat something one day (like half of a graham cracker) and we would get so excited! We would give her one the next day and she wouldn't want anything to do with it. Finally we tried cheese puffs--something she would eat consistently because they completely melt in her mouth and have a bolder flavor.

We have had a lot of ups and downs, in eating and weight. When she would get sick, she would almost invariably lose a whole pound--a pound that usually took a month or more to gain. At times she would actually drink her whole bottle by straw while at others she wouldn't drink any. Before this most recent crisis, I was particularly pleased with her efforts to overcome her gag reflex on her own. She is now chewing and swallowing small quantities of many foods. We went to McDonalds one day, and she was determined to eat some french fries. She would chew for a while, gag, and even throw up a little, but she kept working on it.

Through all of her difficulties, she has been a sweet and loving little girl. I remember one instance, when I was still getting up at 4AM to feed her in her sleep. Unfortunately, she woke up and I was attempting to feed her by syringe. It was not going well and I was starting to get really frustrated. Without warning, she gently put her little hand on my arm and gave me a sweet caress. It felt like a direct message from Heavenly Father. I immediately picked her up, crying, and just held her close. The feeding was over. I put her to bed and thanked Him for our sweet little girl.

There are times when I have wondered what it would have been like to have just Everett and Lana, or Everett and Maddie and Gwyn so that I could care for them better, but I wouldn't trade any of my children for anything. Through these trials that are "but a moment", they fill my heart with joy.

September '06

August '06

Lana September '06

AAAAAAGH!!!!!!!

So why am I posting at 5 PM when my children are all awake?

Because all four of them are emotional basket-cases right now. Sometimes my presence actually makes it even worse because then they all want me at once and expect me to help them. Right now they're dealing with it (sort of). I had to get away because I was becoming an emotional wreck along with them.

Lana has had a horrible day. Her first feeding was 1.5 ounces of torture, mostly for me. This last feeding was 4 ounces of torture. Usually I do not force her at all: though I am the once who puts the food in her mouth, she is the one that opens her mouth and swallows the food. She wouldn't have eaten anything at her feedings today if I wasn't very persistent. I actually held her nose at one point. Was this a mistake? Maybe. I sure hope not. Sometimes it is so hard to know what to do. It is scary when she is this averse because you don't know when it is going to end. Sometimes I wish I always had the right answer.

Hopefully I have something more positive to write tonight.

A Dream

We are sitting at the table. I set out the food. Lana looks at me and smiles. She starts to eat. She is putting bite after bite into her mouth, chewing it, swallowing it as though she has been doing it for months. She finishes a whole dish of food and laughs her gleeful little laugh with a glint in her eye, as if to say "Look Mama, I can do this. I was only joking!" Then she wants more.

This is my dream--a dream we have been working for for nearly two years now. Right now we are actually at another crisis. It is hard to say what brought it on. Probably a combination of a number of factors: teething, illness, brief change in medication - who knows? It breaks my heart every time, seeing months of progress and precious ounces or even a pound or more of weight going down the tubes. I am so glad that I have Cary to hold me up at times like these. But I have faith that one day my dream will be realized and that my sweet little girl will want to eat, and even like it.

We've got cabin fever!

I think we may all be getting a little bit of cabin fever. Today we needed to go to Petsmart and Lowes, so we grabbed two of the racecar carts from Lowes, strapped the kids in, and raced across the parking lot to Petsmart. The kids loved it, of course, and enjoyed looking at all of the animals afterwards. (I think it did us all some good.) Does everyone go just a little crazy in the winter?

Also today: Lana ate almost a whole slice of bologna! Though she is not consuming large quantities of anything, she has made great improvement in what she will chew and swallow. Unfortunately, her little tummy doesn't seem to be able to handle some of the new things. She threw up most of the bologna 13 hours later. We are still encouraged by her progress, and hope and pray that her new GI doctor will be able to help us sort out her digestive issues.