Understanding Lu: 29 pounds

This is the fourth blog post I have started since November 5th and I just can't seem to get one finished. I'll try to finish this one. Last year at this time Lu weighed 34 pounds. In April she had dropped down to 31-32 pounds. In August, when we went to New York for the EEG, she weighed 30 pounds. In the past month she has lost yet another pound. Her mouth, and tongue, and throat are just not working very well for her anymore. It took her an hour and 15 minutes to eat a very small slice of banana nut bread the other day. But at least she ate it that day. There are many days that she just eats very little solid food and is getting a lot of her calories through liquids in her bottle. She drinks 2-3 Pediasures a day and I have been experimenting with a new blender we got called a Blendtec to make her juices and smoothies high in calories. I load things up with butter, peanut butter, cream cheese, finely chopped nuts, coconut oil, olive oil...whatever I read about that adds extra, but relatively nutritious calories. Many things Lu eats these days such as PB&J sandwiches, banana bread, and cereal bars all need to be dipped in milk and yesterday I bought a container of heavy cream to use instead of whole milk. But nothing is working. She is not maintaining her weight.

Since school started at the beginning of September she has had three colds. Luckily they don't get worse than a cold, but when Lucy has a cold, this means that she gags and coughs on snot all day and night and often throws up when it gets to be too much, so it is exhausting for all of us. I have started giving her vitamin c and zinc supplements, but she still got another cold. And when she is sick she eats even less. I know kids get sick a lot when they first start school, but I also think that Lucy's lack of adequate calories and nutrition is making it worse.

Yes, she has gotten taller in the past year, but when people get bigger, they should gain weight, not lose it. Children should not lose weight. Dr. Sasha said in New York when we were there that it wasn't going to get better. She is an expert and knows that as a fact. Unfortunately, none of the well-meaning "Well it could be X, Y, or Z" statements that people come up with to try and ease my fears or explain it away are just not accurate. The progression of this particular problem in the realm of Rett Syndrome is that it just won't get better. It is the apraxia that arrests her entire body that causes the problem. Her brain cannot tell her mouth and tongue, and throat what to do. This causes her to choke and gag often throughout meals and when she is drinking. This causes concern for aspirating which could then lead to aspiration pneumonia. The International Rett Syndrome Foundation sends out a newsletter quarterly and at the end is always a memorial section that Chad and I stupidly, but compulsively read. 90% of the cause of those girls' deaths tends to be from complications with pneumonia and respiratory issues.

After keeping a weight and eating log for two weeks, I determined that the majority of the time, Lucy weighed 29 pounds. The log took place in between colds where she was eating more than when she is sick. She coughs, chokes, or gags on something daily. She is not even able to eat things like applesauce, pudding, and yogurt consistently anymore as she often gags as soon as I put a bite in her mouth. The smooth texture seems to really bother her all of the sudden. We struggle every day to figure out what to feed her. Somehow she still very successfully eats string cheese. I think it quickly gets nice and mushy in her mouth. She loves tuna sandwiches and last night she was able to eat about a quarter of a cheeseburger from McDonalds which she requests with her Tobii all of the time.

So, last weekend I emailed Dr. Sasha and the GI doctor we see in New York and shared my log with them as well as a ton more information and said Chad and I think it is time for the feeding tube. They agreed. I am going to talk to Dr. Loizides, the GI doctor on the phone some time this coming week to go over whatever we need to discuss with each other and we will see what the next step is.

It is heartbreaking. However, I think that once we get past the initial adjustment period, it will improve Lu's quality of life greatly. With more calories and nutrients she will be healthier, have more energy, and have a full belly. We will have huge chunks of the day freed up to do other things besides try to get calories into her. I spend a great deal of time each day feeding her and giving her bottles. And, she will still be able to eat things that she enjoys, by mouth, whenever she feels like it, without the stress of trying to get all of the calories she needs by mouth.

So, that's where we are with that. Sad, but true.

This is a picture from yesterday.