Tuesday, November 2, 2010

November 2010

This will be a big month for our little girl!
On November 9 Scarlette will be 14 months old. She is a rolling master, she is SO close to sitting on her own. She is mouthing everything and most often her fingers, thumb or binky. She holds her binky in her mouth, giggles and smiles ALL the time and is very vocal, though not speaking any consonant sounds yet. She is working very hard with all of her therapists! We just had a six month evaluation with early intervention where we went over the goals we made six months ago and Scarlette had achieved 3 of them and was well into achieving the other three!
On November 10 she is going to be fitted for her hearing aid for her right ear, her left ear has tested normal so we get to stick with just one for now! Speech and Audiology both are expecting this to help her language development so although it's going to be frustrating at first we are glad to be able to provide her with the necessary tools to achieve maximum learning.
On November 29 Dr. Safford is going to be performing a few surgeries on little miss Scarlette. First, he will be putting in a Nissin, also called an esophageal wrap. This is where they take part of her stomach and wrap it around the esophagus in order to prevent the significant amount of reflux she has been dealing with since she was a few months old. They have done copious amounts of studies and at this point we no longer have any other option. Then Dr. S will be doing an appendectomy. She does not have appendicitis. However it is usually diagnosed by specific pain in a certain location of the body, but kids born with CDH often have had organs move around during gestation, causing a slightly different anatomy than kids without CDH and therefore are much harder to diagnose appendicitis. So because they are "in there anyways" they take out the appendix as a precautionary measure. Scarlette's intestines are also slightly altered in their anatomy so if it is necessary the doctor will re-arrange them to their correct anatomical position. (I know it sounds ridiculous!) Lastly, he will be placing a g-tube in her belly. The g-tube is going to be for supplemental feeding, as Scarlette will not ingest enough food orally to allow her to grow. The first 2 months after g-tube placement are key, because this is when the body heals around the tube and accepts that the Mic-Key button is now part of the body. I will update with pictures once the procedure is complete for those interested.
So it's a very big surgery, and we are looking at 5-6 days in the hospital, maybe more depending on how the anaesthesia affects Scarlette's lungs. During her last two surgeries she has had slight lung collapses during the surgeries and has had to be on oxygen longer than a "normal" kid would post-operatively. We are hoping that this time she has no negative effects and heals very quickly! It will be almost a year to the day since Dr. Safford performed her CDH repair, and I started this blog. I can't believe how quickly time has gone by! We are hoping this is her last surgery, at least for a few years!
Here are some pictures of SJ from Halloween. Enjoy!

1 comment:

  1. I wish you all the best in her surgeries. My son had a g-tube (mini-button) and a nissen too. If you have any questions, feel free to ask me.
    I know her surgery will go great. (((hugs)))
    It's never easy seeing your baby wheeled off to surgery no matter how times you've had to go through it.