10/9/07
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???
10/8/07
CHARGE get together
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!
The Pumkin Patch
On Friday our family visited the Pumkin Patch. We took the BIG Cousins along (Katya and Sonya) and went with our friends the Koetje Family. (It is their little boy, Jackson in many of the picures)We had a great time because the patch was really geared toward toddlers...and my neices are ussually game for an outing no matter what it is. Maya really loved looking at some of the animals at the farm, and both girls found some toddler toys to play with. I hope you enjoy the pictures!
10/4/07
Potty Time!
Well, I know we have just begun the long process to get Maya Potty trained, but we are having some great success! For a few months now, when Maya's night nurses notice her waking up in the morning they stick her on the potty....and wouldn't you know it...the girl will go about 75% of the time, if they get her on it quick enough. Now that school is in full swing, and the kids there are working hard at potty training too, I figured it was time to get Maya at least started on what will most likely be a long process. She now uses the potty 1st thing when she wakes up (good success), once at school (no success there yet), right when she gets home between noon and 12:30 (HUGE SUCCESS....she has gone EVERY day this week at this time!), at 3:45 (some success), after dinner (no success yet), and before bed (no success yet). Maya is so cute. She sits on the potty and reads her "Big Girl Potty" book. In fact, if she does uses the potty, she will start standing up, as if to say "all done". I really think she is starting to understand what this potty is for. I think we will continue with this routine for awhile, and see how it goes before I start some other creative measures to encourage her use of the potty.
Addy gets a kick out of Potty time too...no modesty for Maya, that's for sure. Nothing like using the potty with your one year old sister trying to see what kind of business you are doing. Addy is almost more interested in what Maya is doing, than Maya herself. I think it may be time for another potty:-)
Other updates on Maya:
Big ENT appointment on Tuesday next week...I hope we make a time line for trach removal (however, Maya's secretions have not been great since her esophogus surgery)
Maya continues to sign a lot and is making progress at school...sitting for story and circle time, and being on her feet much of the morning!
Maya is on a blenderized diet that is going well. She now eats 5 times a day (very slowly) and currently she does not eat at night time...which is a huge change!
Maya is on her feet a lot more at home...her energy and playfulness has increased noticably since school started.
Maya is now "eating" dinner with us every night, and we only use sign language at dinner time too. Maya gets a cup and a spoon or fork (she prefers the adult sized silver wear fork)and a cup with something strong tasting in it (BBQ sauce, sweet and sour sauce, cocktail sauce). She takes some of it to her mouth, but nothing amazing! We are still thrilled that she enjoys being at the table with us, and is very interested in food.
Addy gets a kick out of Potty time too...no modesty for Maya, that's for sure. Nothing like using the potty with your one year old sister trying to see what kind of business you are doing. Addy is almost more interested in what Maya is doing, than Maya herself. I think it may be time for another potty:-)
Other updates on Maya:
Big ENT appointment on Tuesday next week...I hope we make a time line for trach removal (however, Maya's secretions have not been great since her esophogus surgery)
Maya continues to sign a lot and is making progress at school...sitting for story and circle time, and being on her feet much of the morning!
Maya is on a blenderized diet that is going well. She now eats 5 times a day (very slowly) and currently she does not eat at night time...which is a huge change!
Maya is on her feet a lot more at home...her energy and playfulness has increased noticably since school started.
Maya is now "eating" dinner with us every night, and we only use sign language at dinner time too. Maya gets a cup and a spoon or fork (she prefers the adult sized silver wear fork)and a cup with something strong tasting in it (BBQ sauce, sweet and sour sauce, cocktail sauce). She takes some of it to her mouth, but nothing amazing! We are still thrilled that she enjoys being at the table with us, and is very interested in food.
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