Maya is already home from surgery

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!

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!

a little update

Both girls continue to be healthy and active. Maya is STILL drooling an unbelievable amount. I am simply counting the days until her ENT injects that botox into her salivary glands. We recently learned what Maya needs to accomplish medical-wise prior to getting her trach out. First of all, she will need to tolerate receiving Oxygen at night (she only needs it at night) in a method different than she is receiving it currently. Now, she receives her O2 through her mist collar (which simply is a small mask that goes over her trach and humidifies her airway at nighttime). However, without a trach, she cannot use the mist collar. Instead she will need to use a nasal cannula. I am not sure if any of you have used one of these (I know some of your kids have), but I just wonder if Maya will put up with little prongs tickling the insides of her tiny little nares while she is sleeping. An O2 tent was mentioned once as well, but I can only fathom how much that would cost!!! Needless to say, after Maya's procedure in January (esophageal dilation and botox) she will begin nasal cannula "boot camp." She will be given O2 through the collar AND cannula, which means two large O2 tanks in her room (remind me not to burn any candles near her room!)

THEN, she will require a sleep study. This means she will spend the night at Children's hospital in Seattle, with numerous wires attached to her while she sleeps. However, she will also NEED to have her trach capped, and tolerate her nasal cannula along with all these wires, and not have any signs of distress...sounds a little impossible to me, BUT it HAS TO HAPPEN for her to get her trach out!!!

But, can I just tell you how cute she is! I got a sneak peek in her preschool class today (her formula spilled before school even started, so I had to bring in more, and was invited to stay awhile...which I can NEVER turn down an adorable group of 3 and 4 year olds, who mostly sign better than I do). As soon as I entered the room I found her in her favorite spot...painting at the paint easel...she was painting some green masterpiece! She spends a great deal of her time with her para educator with signing cards and pictures trying to work on communication. She even got some one on one time with the speech pathologist too. Then she just walked on over to where all the other kids were and sat at the table in the house keeping center and pretended to eat food right alongside them...pretty great stuff for a kid who does NOT eat with her mouth.
Later I moved to the books with a few other kids, and of course, over came Maya eventually and she decided to "plop" herself in my lap. I just love being in class with her...she is definitely not at all where the other kids are academically or socially, BUT she is learning so much and school is a wonderful experience for her. AND, it doesn't hurt that all the kids really like her!

Addy is doing great too! she has learned some new signs "tree" for Christmas tree, and our newest favorite is when she does the applause sign. You raise both hands and move your hands by twisting your wrists, and we always say "yeah"...it is just adorable...last night Maya was sitting at dinner with us and tasting some of the food, and Dean and I did our ASL "Yeah, Maya" signs, and Addy, quite proudly imitated us! She simply could not LOVE and ADORE her sister more!

Swallow study, ENT Appt, and BOTOX

Can you believe at the age of 3 years my little girl is going to get botox?!?!? After some concern with Maya's increase in secretions and drowling, we discussed the possibility of giving Maya some botox to decrease her secretion production. Her ENT agreed that she would be a great candidate for botox, and that it should help a great deal. Basically, the botox would be injected into her main 4 salivary glands, which would cause the glands to not produce much secretions. The botox would wear off after 4-6 month, but we are very willing to give this a try. In order to do the procedure on Maya (a squirrely 3 year old), he would need to sedate her and do this in the OR. Fortunately, her ENT also needs to do a scope on her to figure out why her sphinkter (sp??) is not opening regularly to allow secretions or food to go down her esophogus. During Maya's swallow study only 2 out of 20 times did Maya's shinkter open to allow food to go down her esophogus. On the other attempts, no matter how hard Maya tried to swallow...AND she did try hard to swallow MOST of the time the shrinkter did not open and when her swallow was complete, she would aspirate ALL her food between swallows. This is not good because she could get pneumonia. SO, we will be having a procedure (day surgery) on the 11th of January to have Maya checked out, scoped, possibly dialate her esophogus (which may be not be functioning well because of scar tissue from previous surgeries), and finally given some botox.

When I scheduled this appointment, a number of the ladies at the front desk were joking about having Maya's ENT give them some of the remaining botox. It is so funny how many people really want to do botox for cosmetic reasons, when I had to really convince Dean that Maya would not look any different appearance wise if she had the botox done...which I thought was pretty cute. Until then, Maya will see her Cardiologist, her Pulmonologist, her nutritionist, her Craniofacial Dr., and have and echocardiogram done on her heart. All of this along with her procedure in January, will give us a good idea of when Maya may need to get her trach out. If she needs heart surgery this summer, there will be a push to get the trach out soon (spring most likely). If not, it will most likely be up to Dean and I, as to when we would like to attempt to take out the trach.

On less of a medical note, we are very excited to be spending the holiday with both sets of parents, and brothers. It is so nice to see family this time of year. Addy is walking a ton, trying to jump even though she cannot get off the ground, learning new words daily, and loving her big sister. Maya will NOT ignore her forever...Addy is convinced! Addy needs to watch Maya get on and off the bus each day, make sure Maya is using the potty chair properly (and checking for any sort of action in the potty), she wants to help feed Maya through her tummy tube, and spends hours putting a syringe into a feeding tube...in and out over and over, when Maya is in her corner reading, Addy is in the dorner playing and occasionally stepping on or sitting on Maya, and when Maya laughs, Addy Laughs, and when Maya coughs, Addy says "ca,ca" with concern, and when Maya cries, Addy will ocasionally sign "sad". They are really cute these days! I have even seen Maya smile a number of times at Addy...maybe it is not so bad to have a little sister after all!

Halloween

ENT visit

Maya went to Children's today to visit her ENT. Her secretions seem to have been worsened by her previous surgery, and both the ENT as well as our family has been greatly dissappointed. Unfortuately, there are no clear answers as to why. Maya was scoped through her nose into her airway (not a fun procedure at all), and her surgery has healed nicely. In a month we will return to Children's for a Swallow study and another ENT appointment to determine if her swallow is safe enough to get her trach removed. I must say my overall feelings were not positive today, partly because it was also VERY challenging to have a one year old with you during an appointment where you are in a tiny office with lots of "fun-looking" equipment. Not to mention the one year old that was weary, hungry and clingy during an aweful, scary looking procedure that I had to (along with 3 doctors) hold Maya down for. I had two VERY unhappy campers by the end of the procedure, and I was MOST definitely ready to go home. I think Addy has seen her LAST visit to Children's for awhile.., Anyone want to babysit her???

CHARGE get together

Make photo slide shows at www.OneTrueMedia.com

Our local (Western WA) CHARGE friends got together in Bellingham this past Sunday. It is always so great to see the progress each child is making. I am still blown away by how different and similar all these kiddos are, but for me the best part is connecting with parents who know what it is like to have a child with CHARGE Syndrome, in a world where most people have never even heard of the Syndrome! I loved our get together...thank you Max (and your mommy) for allowing us into your beautiful home and hosting us. I wish I had taken some better pictures...I am sure I will have more to share when my friends post pictures on their web sites. I look forward to reconnecting in the Spring!