|Haley and Rachel|
Rachel: Occupational therapy continues to work with Rachel on getting her to eat. She has made only small progress with it. It will be a long, long road to get her eating normally. She will swallow small amounts of water and sometimes, if we are lucky, small amounts of yogurt. She continues to put foods like pretzels, crackers, cheerios, etc in her mouth, but will only chew them and spit them out. She just doesn't seem to know how or is afraid to swallow. Only continued practice and therapy will eventually get her eating. If anyone has any advice or has had some experience with what Rachel is dealing with please comment. I would like to know if anyone else out there has had any luck with getting a child to eat that has severe oral aversion like Rachel.
Last week Rachel had a 6 month follow up appointment to evaluate the continued use of her SMO's (supra-malleolar orthosis). These are the foot/ankle braces she wears to help with her walking. She will have to continue to wear them for at least another 6 months since she does have some right sided weakness. Her right sided weakness is not too terrible, but the SMO's will help strengthen that right side when she walks.
Rachel is doing better with age appropriate play. Rachel likes to hug her baby doll. She sees me holding Kayla and is "acting" out what she sees. She likes to roll a ball back and forth with us. She is learning to do puzzles and loves to look at books! She also really likes to watch cartoons on the iPad. Rachel is a very curious girl and looks at everything in detail.
Since Rachel has severe hearing loss she is learning sign language. She is picking up on more basic signs. She knows how to sign book, ball and more. Yes Rachel is still wearing hearing aids, but its a struggle to get her to wear them. She pulls them out all the time. Its also somewhat of a struggle to get her to wear her glasses. Overall, Rachel is doing good.
Haley: Haley recovered well from her tonsillectomy back in February. We are so glad those HUGE tonsils are out. She is able to swallow easier. Haley is doing ok with her eating. She still prefers smooth baby foods vs. textured foods. The occupational therapist is working with getting her to chew more textured foods. Haley is still a tiny, petite girl, but I can tell she has grown. Haley will be seeing the endocrinologist in June to evaluate again the need for growth hormone or not.
Like Rachel, Haley was wearing SMO's. Well Haley no longer needs them! Haley is walking great.
Haley had an appointment with the retinal specialist earlier this month and the doctor saw no changes in her right eye. The doctor could still see some retina. He told me that her right eye is in no way normal, but she does have some retina that is allowing her a little bit of vision. Haley is doing so well with such limited vision. We assume what she can see at this point, but she loves to look at lights and we can tell she sees people and objects. She gets around well. She doesn't run into things as much as she used to. She is learning to use the small amount of vision that she has. It's also a struggle to get Haley to wear her glasses. We still don't know for sure if the glasses help her little bit of vision or not. We continue to try to get her to wear them just in case.
Haley has been making more vocal sounds lately. She says "ma, ma" and "ba, ba". Haley has moderate hearing loss. She has been wearing her hearing aids fairly well. When Haley had her tonsillectomy the doctor attempted again to get tubes in her ears, but her ear canals are still so tiny. Once tubes are able to be placed, I know Haley will be able to hear more. Overall, Haley is also doing well.
Below are pictures of Rachel and Haley enjoying the nice Spring weather here in Houston, Texas. I love this time of year!
|Haley and Rachel|