Great news!!

We have great news to share today. Addy has begun pushing up with her arms when laying on her stomach. That might not seem that great, however, it's a motion that mom worried about for a very long time. Due to some of the neuromuscular abnormalities that seem to be going on (none of which we have any name for or any explanation), Addy's upper body muscles have been very tight. She has had a very difficult time laying on her stomach for any length of time due to the tightness. She just couldn't quite figure out how to manuveur those arms to help her out. We have been continuing with therapy twice a week which is helping immensely. Before we know it, she'll be off and crawling. Happy day! Enjoy the video.

Halloween

Happy Halloween!

Just can't win

Well, we have been to the doctor several times over the last month and a half and now the word is that Addy is gaining too much weight. We just can't win. We went from receiving the "failure to thrive" diagnosis at many appointments to now being told that we are feeding her way too much. I personally think that what she eats is just fine. She had so much trouble feeding and coordinating the suck, swallow, and breath just to take the bottle and now she has seemed to figure it all out. She takes the bottle well and we have begun spoon feeding. So far, we haven't found any foods that she doesn't like. She currently weighs 17 pounds, 12 ounces. The doctor seems concerned because she has gained about a pound per week for the last month and a half. Oh well, seems she's making up for lost time. Our goal (says the doctor) is no weight gain for 2 months. Yeah, right. Try doing that with a growing and hungry baby. We'll keep you updated.

Real Food!

My first experience with spoon feeding. Rice cereal, Yum!

Lil Spartan Fan

Hanging out with dad on game day. Go Spartans!

Reese just loves her new cousin. Don't drop me!

Gaining weight

From about the end of May until the end of July, the pediatrician was very concerned about Addison's weight. She was being seen on a two week basis and each time we would go in for a weight check, the gain was not significant enough. She continually received the "failure to thrive" diagnosis.

During this time she also saw many specialists. We began with Dr. Bawle in genetics. She felt as though their was no apparent syndrome that she could see with the naked eye. Addy underwent another round of genetic tests, which fortunately came back normal. The doctor did note that she felt that Addy had increased tone in her upper body and she should receive therapy. She is going to see her back in 6 months to watch for developmental milestones.

We then went on to see Dr. Arneja in plastic surgery. He determined that she does not have further signs of a cleft palate other than the bifid uvula (this is the lowest form of a cleft that a person can have). There continued to be concerns about her feeding issues. We tried some specialized bottles, which later failed because they were more for sucking issues and Addy seemed to have more difficulty with swallowing. He is going to follow her for her hands and agreed that she should receive therapy, OT and PT.

Next up was Dr. Chinarian in physical medicine and rehabilitation. Mom was anxious for this doctor as he is well known among my area of special education. Many of my students see him for their disabilities and I felt as though he may provide great insight into what seemed to be going on with Addison. He too felt as though there was no syndrome that he could pinpoint. He agreed that therapy would be in her best interest and did us a big favor by moving us up on the waiting list. From this appointment she had an x-ray taken of her neck which later revealed that everything inside is normal.

We then saw an ENT, Dr. Haupert who diagnosed her with laryngomalacia (an immature flopping of skin that covers the larynx). This could create some feeding issues, weight gain issues and abnormal breathing patterns. Most children outgrow this, so she will be watched closely.

The pediatician continued to be concerned about her weight gain so we began making her formula thicker for more calorie intake. This seemed to be the turning point we were looking for. Thickening her formula drastically changed her feeding. She was better able to control the formula and her swallow improved. The doc also ordered an echo and renal ultrasound just in case and both were normal. Yeah!!!

By the end of July, therapies had begun and the doctors started to be less concerned about her weight. At each appt. she continued to gain a decent amount of weight. She weighed 9 pounds, 8 ounces.