Hey all, sorry for the lack of updating. To be perfectly honest, there hasn't been an awful lot to blog about. We've actually had a bit of a reprieve since Lucille's surgery in early May which has been lovely.
We have been instructed to massage her lip scar to break down the scar tissue that is there from the surgery. When we first had the very brief meeting with Dr. Fisher about the massage we were amazed at how very hard the scar was. It is essentially a knot that forms under the skin. We were instructed to build up towards 50 minutes of massaging a day (10 minutes at a time, 5 times a day).
After Dr Fisher's first massage attempt with Lucille it was very evident that she was not going to be a fan of it. We knew that it was going to take us a long time to build up to that 50 minute goal. The massage process hasn't been an easy one. There have been times where we have slacked and I have definitely felt guilt over that at times. When we do the massage, our little girl screams so much and it's really difficult for us (especially Esther) to hear.
At the beginning of the summer we decided that the massaging would be my full-time gig. Esther did a majority (if not all) of the taping during the last 6 months and that caused a lot of screaming from Lucille. Esther had decided that she had enough and that it was my turn and I'm happily taking over massage duties. When I do the massages, I use a vitamin E oil to help make the friction less and to moisturise the skin and help the scar heal. The purpose of the massage is to release the scar tissue so that it brings the lip back down to where it should be. You may notice that some of the photos that I've attached that there is almost a little arch you can see that is pulling the lip up. Dr. Fisher said that this normally goes back down within a year or so and that the massaging really helps with that.
As of right now we're getting about 12-20 minutes of massaging a day. It's not easy a) to find the time and b) because she's very good at screaming and fighting and trying to pull away. The older she gets, the better she is at squirming out of holds. I've tried many things to distract her while massaging her lip. I sing to her, which worked for a bit but then it stopped working. Then I tried giving her raspberries on her tummy while massaging and that worked for a bit... until it didn't. I've had her watching Baby Einstein movies on my phone to distract her. That worked for one session and then never again. The best time to massage has been when she falls asleep, but you can only do it for a couple of minutes before she starts to stir. SO this is very much a work in progress, but something that I'm committed to doing as I know the long-term benefits are great.
In early September, Esther took Lucille to Sick Kids for her pre-op appointment for her palate repair surgery. This was a full day of appointments to have a hearing test, an appointment with the Ear/ Nose/Throat specialist, a checkup with the Dentist, a consult with the occupational therapist, and a meeting with her surgeon, Dr. Fisher. Sometimes it seems like yesterday was her first surgery and we're already starting the process/appointments for the next surgery. It was an all day affair. All of the appointments went well. Lucille's hearing is just fine which is wonderful as hearing loss is a common side effect of cleft babies. The dentist was surprised about how many teeth Lucille already has (seven!) but didn't have any concerns. Her 8th tooth is on her cleft side and it's hard to say when or where it will come in, if it does come in. Our biggest takeaways for the day were that we need to regularly brush Lucille's teeth and she needs to be fully weaned off of the bottle before her surgery. The former will be much easier to implement than the latter. It took the occupational therapist all of 30 seconds to assess that Lucille was doing just fine developmentally and also that her personality may prove difficult to wean from the bottle. No kidding! While Lucille will happily drink from a cup at meals, she is not keen to drop bottle feedings. I have decided that we are going to have a peaceful September and then some time in October we will go cold Turkey on bottles. That should be an interesting few days.
The week after these appointments we learned that Lucille's next surgery will be mid-November. Later than we'd like, but what can ya do? It's nice to have an actual date.
Overall, Lucille is doing really well. She's active as heck- crawling all over the place and cruising a bit too (much to her brother's delight). She is making lots of sounds, even though her cleft limits what she can do. Mama was her first word, which Esther was thrilled about. Lucille does say Dada but it actually comes out more like nya-nya because she can't make the "D" sound. She is also picking up signing, which helps a lot with communicating (especially when she wants her bottle!). We hope you all enjoy the pictures and we thank you all for your continued support and love. We will keep you updated when things happen next.
Lots of love,
B&E
We have been instructed to massage her lip scar to break down the scar tissue that is there from the surgery. When we first had the very brief meeting with Dr. Fisher about the massage we were amazed at how very hard the scar was. It is essentially a knot that forms under the skin. We were instructed to build up towards 50 minutes of massaging a day (10 minutes at a time, 5 times a day).After Dr Fisher's first massage attempt with Lucille it was very evident that she was not going to be a fan of it. We knew that it was going to take us a long time to build up to that 50 minute goal. The massage process hasn't been an easy one. There have been times where we have slacked and I have definitely felt guilt over that at times. When we do the massage, our little girl screams so much and it's really difficult for us (especially Esther) to hear.
At the beginning of the summer we decided that the massaging would be my full-time gig. Esther did a majority (if not all) of the taping during the last 6 months and that caused a lot of screaming from Lucille. Esther had decided that she had enough and that it was my turn and I'm happily taking over massage duties. When I do the massages, I use a vitamin E oil to help make the friction less and to moisturise the skin and help the scar heal. The purpose of the massage is to release the scar tissue so that it brings the lip back down to where it should be. You may notice that some of the photos that I've attached that there is almost a little arch you can see that is pulling the lip up. Dr. Fisher said that this normally goes back down within a year or so and that the massaging really helps with that.
As of right now we're getting about 12-20 minutes of massaging a day. It's not easy a) to find the time and b) because she's very good at screaming and fighting and trying to pull away. The older she gets, the better she is at squirming out of holds. I've tried many things to distract her while massaging her lip. I sing to her, which worked for a bit but then it stopped working. Then I tried giving her raspberries on her tummy while massaging and that worked for a bit... until it didn't. I've had her watching Baby Einstein movies on my phone to distract her. That worked for one session and then never again. The best time to massage has been when she falls asleep, but you can only do it for a couple of minutes before she starts to stir. SO this is very much a work in progress, but something that I'm committed to doing as I know the long-term benefits are great.
In early September, Esther took Lucille to Sick Kids for her pre-op appointment for her palate repair surgery. This was a full day of appointments to have a hearing test, an appointment with the Ear/ Nose/Throat specialist, a checkup with the Dentist, a consult with the occupational therapist, and a meeting with her surgeon, Dr. Fisher. Sometimes it seems like yesterday was her first surgery and we're already starting the process/appointments for the next surgery. It was an all day affair. All of the appointments went well. Lucille's hearing is just fine which is wonderful as hearing loss is a common side effect of cleft babies. The dentist was surprised about how many teeth Lucille already has (seven!) but didn't have any concerns. Her 8th tooth is on her cleft side and it's hard to say when or where it will come in, if it does come in. Our biggest takeaways for the day were that we need to regularly brush Lucille's teeth and she needs to be fully weaned off of the bottle before her surgery. The former will be much easier to implement than the latter. It took the occupational therapist all of 30 seconds to assess that Lucille was doing just fine developmentally and also that her personality may prove difficult to wean from the bottle. No kidding! While Lucille will happily drink from a cup at meals, she is not keen to drop bottle feedings. I have decided that we are going to have a peaceful September and then some time in October we will go cold Turkey on bottles. That should be an interesting few days.
The week after these appointments we learned that Lucille's next surgery will be mid-November. Later than we'd like, but what can ya do? It's nice to have an actual date.
Overall, Lucille is doing really well. She's active as heck- crawling all over the place and cruising a bit too (much to her brother's delight). She is making lots of sounds, even though her cleft limits what she can do. Mama was her first word, which Esther was thrilled about. Lucille does say Dada but it actually comes out more like nya-nya because she can't make the "D" sound. She is also picking up signing, which helps a lot with communicating (especially when she wants her bottle!). We hope you all enjoy the pictures and we thank you all for your continued support and love. We will keep you updated when things happen next.
B&E
Thanks for the update buddy - lots of love from the other side!
ReplyDeleteSo nice to hear an update! She's gorgeous and looks like a perfect mix of the two of you! Hugs! And don't be a stranger.
ReplyDelete