January 24, 2013 was a long day of many doctors appointments. We left around 6am in the morning to Drive to University of Michigan. Eric came with us and also Eliza. Gretta was suppose to stay and go to school, but school was cancelled due to the 12 inches of snow we received so she spend the day with the Barfuss'. She actually spent the night at the Barfuss' because we were leaving so early It took us over 3 hours but we made it to Ann Arbor safe and sound. Getting out the driveway, the neighborhood and then around Kalamazoo were the worst parts of the drive. After Battle creek it was pretty much clear and snow free.
First Carli had another hearing test in the booth which confirmed what we already know that she has some hearing loss in both ears now due to the fluid and maybe permanent loss in the left ear. Then we meet with Dr Marci Lesperance. I was very impressed with her. Her specific area of study is on hearing loss in children with congenital problems. She was very knowledgeable and I finally feel like we have someone who knows a lot about Sticklers and has had lots of patients like Carli. After many, many, many ENTs I think we have found one that is really going to help my kids and understands what she is dealing with.
Carli has already been fitted for her hearing aids at the local county hearing impaired program and they should be here in a few weeks. She is going to have a sleep study test the night of Feb 19th to the morning of Feb 20th to test her airway and if she passes she will be released from her monitor.
Then we saw Dr. Buckman and he scheduled her for her cleft palate repair on May 14th. That surgery will require at least an overnight stay. They seem very conservative in Michigan, so she might even have to stay two nights. I am so glad to have a date and something to plan around. Her jaw has grown a lot, so they thought at May would work. I am so glad.
Then we meet with Genetics. That was a very long appointment and they ask tons of questions took a very detailed family history. I am excited to see the final report so we can share it with the rest of the family.
We were finally done at 4pm and drove home. It was a long day with a lot of information to digest. After thinking about the pros and cons we decided to go ahead and have her get ear tubes before her cleft palate repair and also have another sedated hearing test at the same time. It wasn't my first choice. I would have rather had everything done May 14th, but that wasn't going to work, so it seems like the best option. Her ears are really her biggest problem right now and it will be good to know what she can hear after the tubes are placed. I am not a huge fan of tubes due to all the problems that Gretta had with them, but I also understand that they are a necessary evil and we should at least give it one shot. At least I now know about custom ear plugs.
Gretta never had any fluid in her ears until around her 1st birthday, but with Carli we have been dealing with it for about 6 months with no resolution. So even though I have tried everything to prevent her from getting tubes so early I think it's the best thing for her hearing. I have tried essential oils, massage and taking her to the Chiropractor. It has helped, but as soon as she even gets a little runny noes she gets fluid again. The concern is that her hearing loss is affecting her speech which is delayed.
So she is going to get tubes and a sedated hearing test on Feb 27th.
Her speech continues to improve. The speech therapist comes to our house twice a month and gives me activities to do with her to help. It is called the Beckman method. If her speech doesn't improve a lot after she can hear better she will get more intensive therapy.
She is such a happy baby and we are so glad to have her in our family. She is really a joy to be around. I also see how much we have been able to share bits of the gospel with all of the people who come into our home to help her. When Grandfather Huff gave her a blessing he blessed her that she would be a light unto the World and a force for goodness. I already see the affect she has on the people that have come into our house to help her. I think it is part of that blessing already being fulfilled. Sometimes God has a greater plan than all of us. She truly has a light about her. We are so glad she is part of our family.
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