We have been through a LOT with Maya, and today makred a very important milestone...a surgery without an overnight stay. We only had one prior to this with her ear tubes, but I was more uncertain about this procedure as there was actually an incision involved and the ENT checked out a few things with Maya as well.
1. He scoped her airway to make sure it looked healthy enough to removed the trach, if she passes a sleep study. RESULT: her airway looked great, and the pictures we received post surgery reminds us just how much of her airway her trach actually takes up...it will be easier for her to breathe without the trach in the way.
2. He dialated the area near the opening of her esophogus to increase the opening alomost 3 times the size it was due to scar tissue...this should have some positive effects once Maya heals up.
3. He checked her ears and started her on antibiotics since an infection was present...not a big deal for Maya, she has many ear infections, but it is good to know her ear tubes are still in good shape.
4. she received injections of BoTox in 2 of the 4 main salavary glands to help manage her secretions. The original plan was to do ALL glands, but her drooling had decreased some recently, and drying her out too much could cause dental cavaties...so we decided to do 2, and we could always do all 4 next time. It is hard to tell how the BoTox is working, as Maya is drooling some, NOT a ton, due mostly to the fact that I believe her throat is pretty sore today...and she might not want to swallow yet.
Overall the day was great, once she was awake she was back to her normal self in no time. She even was riding on her new rocking horse shortly after we arrived home today at 1:30. Today was a good reminder of how healthy she is. I think a typical kid would have handled this procedure in a similar manner to Maya, other than the fact that Maya was very happy to walk right out the door on her way to surgery with the anestheiologists, which makes this ALL much easier on mom and dad. I hope the dialation and the BoTox will help her manage her secretions better and possibly allows us to start tasting orally again. Only time will tell. Addy spent the day with her grandma and is happy to have Maya home...they are now both playing happily in Maya's room...for a surgery day, you could not ask for better than what we experienced today!
We invite you to share in our family's journey. Our oldest Daughter is a pure delight and also happens to have CHARGE Syndrome and has been through numerous medical procedures. She has two little sisters who adore her and bring endless amounts of energy and joy to our family. These are our stories.
1/11/08
1/3/08
Christmas happenings
(first picture)
Marty and the girls
(second picture)
Babushka and Giampa (Dean's folks) were here for Christmas...it was so fun to see them and Addy learned to say "Babu"- our nick name for Dean's mom.
(Third Picture)
Maya and Addy playing with their new Little People Farm set. I cannot believe they are playing together!(I actually caught Addy in this picture signing "thank you")
Our Christmas though wonderful, did not start off on the right foot. The day before Dean's birthday (12/17) Dean had an emergency appendectomy. Later that week our truck got a flat tire, Addy's bedroom door fell off its hinges, and our dishwasher broke. Not to mention our plans to go to Portland had to be cancelled, which meant we also did not have night nurses for 5 nights. The wonderful part is that Dean is doing great, he is now back at work 2 weeks post surgery, driving, and though he is not allowed to lift the girls for 2 more weeks he is up off the couch and able to help me around the house (which I am VERY grateful for). My family rearranged their Christmas to see us for the weekend befor Christmas to celebrate AND to help me out with the girls. (thanks mom and Holly for all your extra efforts) Dean's family was a huge help as well. Dean's brother stayed with Dean the night of surgery, and helped the following night when Dean got home and Maya got sick...thank you Kurt! And then Dean's family was here for Christmas through New Years so I had a lot of help from his parents around the house and helping with the girls. We also had a wonderful visit with them as well. Dean and I are very blessed to have such wonderful supportive parents AND siblings.
As for the girls Addy has started her career as a singer and will sing babble songs over and over for long periods of time with the sweetest little voice you ever heard. She has also become AS obsessed as Maya is with the Singing Time videos. She does her best to mimic ALL the signs, and many of them she is getting quite proficient at. She is also gaining some pretty impressive vocabulary words for a 15 month old, like "flower", Bless you,""thank you" and many other cute words like "Ni-Ni, for night, night" and noises to describe animals "neigh", "moo", buff(for dog). We are amazed at normal speech developement.
Maya is doing well too. She has remained extremely healthy aside from her Christmas bug, that was very minor. She has only missed 2 school days due to illness (just before Christmas) this entire year. She is trying to transition back to the school routine which has proved to be quite challenging for her...hopefully it will get better. Her secretions have suddenly decreased, and despite the change we still plan to go ahead with her procedure next Friday to scope her airway and possibly inject some BoTox to help manage the secretions. Maya is LOVING a number of new toys from Christmas: Her new springy rocking horse, the Little People animals and vehicles, new play dough, her new light Bright (which is a chellenge, but she is very determined to figure it out), and a number of new books. After next Friday, Maya will begin to train on wearing a nasal canula at night for Oxygen, which she needs to adapt to for her trach to come out, as they believe she will still need the oxygen at night. We fear this may be a bit of a battle, but a neccisary one at that.
I think most of you all know that I am now about 15 and 1/2 weeks pregnant and feeling pretty good. My tummy is starting show and pants are getting tighter. I am still tired a lot (but with two kids to chase around all day what can you expect). I will have a high level ultrasound on February 8th that hopefully will help us dicover the gender of this baby and the over health too. My C-section date is currently set for June 17th, so the baby will be here by that day if not sooner...though at this point the 17th seems soon enough!!!
I hope the New Year is treating you all well.
Many Blessing to you all!
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