Going forward, I am going to try and do a weekly (or maybe every couple of weeks) update, in addition to other posts. Frequency will depend on what is going on in our lives, but these posts will give me a chance to share the latest news. Of course, I promise lots of photos and/or videos! Now, if you are interested, here is the first weekly update!
I had previously mentioned some of the struggles Addison has been having. On Monday, she had an appointment with her physiatrist (a physiatrist is a rehab doctor). He manages her cerebral palsy and will be the doctor who follows her closest over the years. We went with quite a list of things to discuss with him, seeing as how we had made no progress otherwise with our concerns. We felt that the dose of her muscle relaxer needed to be increased because she was still having spasms in her arms. The spasms almost always make her cry and recently they had started waking her up during naps and at night. He agreed and increased her dosage. We are hopeful that this will make her more comfortable. She’s still adjusting to the new dose; it is making her a little bit drowsy. We also spent a good amount of time discussing her issues with feeding and the results of the tests ordered by her gastroenterologist. He told us that the test they usually use to evaluate for aspiration is the swallow function study (which showed she aspirated every thickness of formula they tried). She had two other tests done in nuclear medicine: he said the first usually looks at how the esophagus works and the other looks at reflux. The second test showed pretty significant reflux that made its way almost up to her mouth. Our GI told me that reflux was not her problem and was not a problem in the vast majority of babies, and took her off her reflux medication. He also told me these tests were to evaluate for aspiration, AND we were never told that the one showed significant problems with reflux. Needless to say, we will not be returning to him and our physiatrist gave us a referral to a different GI doctor. He feels that she may benefit from some type of reflux medication and that a feeding tube may be in her future. On top of not eating enough volume and vomiting regularly, she lost weight since our last visit and he was concerned that she is not getting enough fluids. He explained that the thickened formula has less water than unthickened. Unfortunately, we do not see the new GI doctor until the beginning of October. He also gave me an order for Addison to start occupational therapy. She already does physical therapy once per week. Our PT had brought up having OT see her for possible hand braces since Addison holds her hands in fists the majority of the time. Dr. Najarian agreed, so we will see what the OT thinks. We also have an appointment scheduled with speech therapy for next week, so we will see if they have any input.
The girls either had colds this week or just snotty noses thanks to teething. (Oh, yes, teething; it’s wonderful). Anyways, there was lots of snot in our house this week. Oriana, who is usually perfectly content to play by herself, has been super clingy. She absolutely had to be in the same room as me. If I left the room, she was crawling after me and crying. She has definitely got the army crawl down and she is fast. Oriana has also started to pull herself up on things. She has managed to get on her knees and used the steps to get into a standing position. I think Violet will be crawling soon; she has made a few attempts, but she doesn’t quite have the hang of it yet. She’s currently sleeping with her knees tucked under her and her butt straight up in the air, so she will get there soon. In the meantime, she gets around by rolling and turning in circles on her belly.
All in all, it was a pretty good week. Addison did not throw up all over me. Not because she didn’t throw up, I just managed to get a burp cloth in front of her face in time to catch most of it. Addison has been more content with the higher dose of muscle relaxer, so we hope that continues. I actually got to work 16 hours this week, so yay for a decent paycheck next week! And, Violet and Oriana are super happy to see me when I come home. Who can be sad when two little cuties smile from ear to ear and wiggle and laugh and babble because they are so excited to see you? Not this mama that’s for sure. I hope your week was full of laughs and smiles and free of baby puke and snot. I’m going to leave you with a couple of videos of Violet and Oriana.
First is Oriana waving. She looks like she has no idea what her hand is doing and she doesn’t know how to make it stop. She has always been fascinated by hands; she totally zoned out for a while there.
Second is Violet and Oriana giggling at each other in the stroller. Love those giggles.