"Nurse" Marty

I got to play nurse today! Maya's nurse called out today, and since it was only the 2nd day of school I decided (after conferring with her teacher), that I would play nurse today. It was pretty wonderful to have a peek at this amazing classroom. Maya's class is mostly 3 year olds, but there are three 4 year olds. I was SO impressed with how well Maya did. She sat on a chair and attended to the teacher some, but never completely scootched off the chair like I thought she would. She has an aid that helps her to get up and move around the classroom and keeps her from getting knocked over, BUT the best thing about her aid is that she is ALWAYS signing to Maya. Maya is getting so much language from the teacher, her aid, the classroom para and the other kids who know sign language. For the most part these are just typical 3 year olds who have hearing impairments, so Maya does get more assistance than the other kids, but they seem to really like her, and be interested in all of the "equipment" that comes to school with her. Maya played in the different classroom centers today and even painted a bus "yellow"...the color that the class is learning about.

I think my favorite part of the morning was watching Maya as the teacher read the class a story. Towards the end of the story, Maya started copying several of the signs the teacher signed...signs she has NEVER signed before. I am VERY impressed with Maya's dexterity...her fingers imitate signs really well.

Being at school also gave me an opportunity to brief the school nurse on Maya, and meet Maya's new OT. Her school is really wonderful...I think she will be happy here for a long time! What could make a Mommy and Daddy more happy!

Maya's first Day of school

I cannot believe my little girl started school today. She even rode on the bus to and from school, and survived! Actually it is amazing that I survived. I never thought I would be one of those parents, but here I am! I was SO nervous last night...how will Maya be on the bus?, She has so much equipment to take to school for her trach, g-tube, and diapering, I just knew I had forgotten to pack SOMETHING, how will the other kids feel about Maya's differences?, What will Maya think of all these signing kiddos?, what will her teacher think of having a nurse in her classroom when Maya also has a one on one aid?, will Maya get too tired to make it all day?, will people not like all of her secretions?, will the school be able to reach me if they need to?, etc...

So Maya got picked up at 8:08 this morning and wore her cute little "toddler" sized Elmo backpack...she was too cute. I met her at the school with all her school supplies, and walked her in from the bus. She was greeted by two familiar faced kids...who knew her from birth-3 services. One little girl even grabbed her hand to pull her and show her where to hang up her coat and backpack. So Sweet! I left Maya as she got ready to "line up" to go into the room. She got off the bus right outside our front door around noon, and I got to find out all about her day!

Inside her backpack she had done some VERY creative artwork on a big piece of butcher paper and a paper plate. She signed "pencil, draw, and school" a few times, and gave me some very wonderful smiles. I think this school thing is going to be wonderful for her, and I definitely can see how it is going to increase her signing vocabulary and her desire to sign and communicate. I am so proud of my big girl. Dean even made it by for a late lunch and we got to chat all about her first day, and he signed to her about her day as well. It was the perfect closure to her first day!

Maya is feeling better!

I woke up this morning to some loud noise! I really though that they were Addy's vocal chords, until I realized that she was still sound a sleep. The closer I listened, I could tell that they were echoingthrough the vents in our house all the way from Maya's room (Maya lives on the opposite side of the house and is with a nurse at night time and much of the day time as well). I walked into Maya's room to find her literally doing laps in her room and laughing, giggling, and smiling...she was feeling pretty good, AND was wearing her regular passimiur valve (which she has not tolerated now for a week since surgery). Maya is still not 100% (she cannot tolerate the cap to her trach yet, and is quite frothy at the mouth and nose.) After the good work out she gave herself upon waking up at 7AM, she crashed at 10AM for a 20 minute cat nap. Now, she is up again ready for her bath, and still wearing her regular valve on her trach!

At this point I think I will send her to school, and be prepared to pick her up early if she is too wiped out to make until noon. I really think she will enjoy getting out of the house, and meeting her new friends! I think Addy will be sad to see her sister leave in the morning, but on the other hand that will mean she can have Maya's room to herself for the morning.

Addy's Hips

Today was an exciting day for us. Since Addy was 4 months old she has been diagnosed with Hip Dysplasia (her left hip was out of socket due to her breech position at birth). From 5months-10months Addy wore a very cumbersome Harness that basically kept her in a "frog-like" position with her legs. Finally, in July, Addy had had enough...even though she only had to wear the harness at bedtime, she refused to keep it on, and learned how to undo the harness. In June Addy had an X-ray to check her hips, and while there was improvement, the Dr. stated that it was too early to tell if the hips would indeed correct themselves or if she would have to undergo a surgery on her hips and wear a horrible looking "Spica" cast on both legs for months. Poor Dean...I think he has had nightmares since the beginning of this entire ordeal...he was CERTAIN that Addy would need this procedure since our luck was never terrific with Maya's health. Today Addy had an X-ray done on her hips to check to see once again if there was improvement. Much to our relief (especially Dean's), the Dr. stated that her hips looked "perfect". He wants to check them again in 6 months, but he is almost certain that after that check up we will be DONE with the hip issue!

This has been a huge relief to us. Maya, as you all know, has been through so much, and to have two daughters with medical needs that would cause Addy to loose the mobility that she has might put us over the edge. We are in a really wonderful stage. Maya is recovering from surgery and hopefully will start school next week. Maya is mobile and learning sign language really well. Addy is finally sleeping well at night, and is developing at lightening speed...it is definitely something new EVERY day! We are enjoying the new pace of life around her...I would not say that it is SLOW by any means, but it is not so tiring, which is giving us more energy to truly enjoy our little girls!

Hospital Visit

Maya's trip to Children's went well. I thought I would make her a book about going to the hospital since she goes so frequently. We took pictures of the stuff we do every time she has a surgery. Some of the pics are pretty cute, so I thought I would share.

Here is a picture of Maya receiving her ID bracelet. It was so fun to actually have Maya engaged in this process. This was certainly a first for her.

After checking in, Maya receives an I.D. bracelet. This is the first time she was not OVERLY bothered by it. When she was little she would cry so hard when they put the bracelet on her, that they would not make her wear it. In fact, she was very proud to wear the bracelet, especially since she though that it was a watch. Yes, that is Maya signing "watch" just above the bracelet...she is too cute!

Finally, here is a picture of Maya standing on the scale all by herself to get weighed. No more "baby" scales for you BIG GIRL! In fact, she is stable enough to stand AND get a good reading on the scale...I think this is another "first" for Maya!







Hopefully, Maya will now have a book to help communicate with her when it is time for her next surgery. We expect a big Heart Surgery next Summer, and before that her trach needs to come out...but that is NOT really a surgery, but it WILL be a BIG trip up to Children's.


During this surgery her ENT lasered off two veinous masses of tissue in her esophagus. The surgery went smoothly and other than losing more blood than normal (since the masses were full of blood), Maya is recovering well. She has a lot of secretions, and most likely will for another week. Hopefully, she can start preschool next Monday, and in a week or so she will be 100% Maya again. She is fatigued and a bit fussy in the evenings, but she was markedly better today in comparison to yesterday...which is great news!

The Spray Park

Here are some fun pictures of our niecesplaying with Addy at the local spray park. It was fun to watch them a few days just before school started. They are such great girls and they are VERY helpful with Addy. Sonya will be in 2nd grade and Katya in 5th grade...we wish they could stay young forever as they are so sweet towards us. It's too bad pre-teenage years are around the corner...oh, maybe it won't be so bad!

Welcome to our new Blog

Hello Friends and Family,
Now that our girls are growing up more and more, we decided we wanted to begin a new website that we can keep throughout their childhood. We thank you all for your consistant support of our family and we hope that we have many exciting things to share on our new Blog. Here are the latest videos from our amazing girls.

We will try to get this blog up and running soon. If you have friends that you trust, and would like us to invite them to read our site. Please e-mail us their e-mail address. That will be the easiest way to invite them.
Thanks,
The Kelly Family

Maya is reading a book!

My Montage 9/1/07

Addy is Walking!