Time is just slipping through my fingers...I can't believe she's 2 1/2! Everything has been going well with her. She's been healthy and I can't remember the last time I took her to Children's. Ok, now I do. It was in September, a GI follow up appointment, and my mom came with me and helped me with Catherine and Daniel. And then we went to Panera's and had lunch and then a little shopping. That was a good day!
Catherine is still progressing at her own pace. I am thrilled about her cruising now. This is really huge (as her PT tells me). She is tolerating increasing time in her pony walker and loves to climb on the sofa and sit with whoever is on there at the time.
Catherine seems to be a little more vocal lately. She has been sqealing and laughing out loud more. When we are reading out loud or having a conversation, she will "join in" with a very quiet jibber jabber. No words yet, but the most exciting thing for us developmentally is her increasing use of signs. A lot of it has to do with the way I am feeding her now (more on that later). When she is at the table she gets a little agitated so sometimes I will sing her a song, which she loves. So she now requests music with a sign! It's very appropriate and she knows it gets me to sing to her. Next I will teach her the sign for "stop" ha ha. She also signs "all done" when I get her out of her high chair. About half of the time she will do it unprompted, meaning I don't say or sign anything. She also pats her belly as a sign for diaper change when I put her on the changing table.
Feeding Catherine has also been a big change. About 3 weeks ago I came across the crazy notion that I could put real food in her g-tube. I know. Crazy! For the past year and a half she has been getting some sort of commercial formula which is nice in some ways. It's easy to prepare, and everyone knows exactly what she is getting. Then I came across the idea that I could give her real food and I thought, why hasn't anyone mentioned this before? Of course this is what she should be getting! There are times and circumstances where formula is necessary, and I imagine I will still use it on occasion for convenience sake, but there is no medical reason why Catherine can't "eat" what we eat. No, she can't get it from her mouth to her belly in the required amounts, hence the tube, but I can put it in there for her.
It took me a little while, a day or two, to get used to the idea, because I associated her feedings more as medicine or a treatment she was getting. Calories had to add up correctly, I had to use a certain technique, many syringes, bags, pump... it was straight out of nursing school! But I am a mother, and while everything I learned in nursing school has helped somewhat in caring for Catherine, it's not what is necessary in feeding my child. What is necessary is love. Her feedings lacked love. Isn't that what mothers are supposed to do? I am not beating up on myself, it's what I was led to believe was the right thing to do by well intentioned doctors and nutritionists. I am just glad I am looking at things differently now because it has caused a domino affect.
Catherine used to be fed at her nap time and during the night. That was because she had reflux and her feeds had to be at a slower rate. She should still be coming to the table with us at mealtimes, but it wasn't happening very consistently. Once I learned about blending up real food and giving it through her tube, I realized that I would probably not want to try to put that on the pump because it's a lot thicker and and would most certainly set off alarms. So, I thought I would just try to give her some small boluses (of pureed foods) during the day and give the rest (Pediasure) at night. Boluses are given a lot quicker and I didnt' think she would tolerate very much. So one day I decided to try pushing her naptime feed with a syringe, right before her nap. I thought she might tolerate 60mL. I pushed 60 and she seemed fine so I pushed another 60mL and I noticed a little bit of reflux (pained look on her face) so I quit. I was so excited that she took 120mL in less than 5 minutes and didn't throw up! Eventually I figured she could tolerate about 180mL max at one time. So I started adding some purreed baby foods to the Pediasure, and then I switched out the Pediasure for whole milk, and now she gets a blend of meat, fruit, vegetables, milk, orange juice, and yogurt or kefir! We just recently purchased (we received a medical discount) a Vitamix blender, so now I can blend up whatever I have on hand to feed her and not worry about clogging up her tube.
The great thing about this is that I have to get her to the table 4 times a day to feed her, just like the others do. And when I put her at the table for her bolus feeds, I put food in front of her. Fun food. Like whipped cream, nutella, peanut butter, cheez whiz, pretzle sticks, flavored cream cheese, guacamole, puff cereal. It gets messy. She likes to throw things when she's done with them. I've learned to be more laid back about her eating. I don't try to sneak things in her mouth when she's unsupecting anymore (now she won't take anything by spoon from me). She doesn't eat a whole lot, she will taste whatever I put in front of her, but nothing more. But she is learning that eating is a pleasurable, fun, social time. She feeds me from her spoon and we sing songs!
So then I started reading about kids who were being weaned from their tubes using a hunger based approach. No one has ever suggested we make Catherine hungry to see if she will eat. Catherine has rarely experienced hunger, and if she has, she doesn't know what it means and that there is a cure for it. She has no desire and no need to eat. It's all done for her. So, what these programs do is cut the calories drastically to make the child really hungry, present food and wait and watch for the child to decide to eat. This is based on the assumption that we are all born wired to eat. Catherine's desire to eat has been repressed. If we can awaken a desire to eat, it would be a wonderful thing. I believe she would choose to eat and her development in all areas would see an improvement. So, I'm doing some research and finding what is the best approach and who is going to best help us give Catherine a chance.
So, lots of good things happening! Everyone else is doing well, the older ones starting up the second quarter of the school year and Daniel is cruising as well, now. Please continue to keep us in your prayers as God is leading us. We continue to pray for all of you!