Summer news

Our Family camping trip:
We just spent 4 days week with my folks, and my brother's family at the Leavenworth KOA...so "camping" is used loosely here, since we stayed in a lodge with electricity, a bathroom, and cable television, and the kids spent much of the day, riding trikes and scooters, playing hide and seek, and playing in the heated pool. We had a blast! Best of all, it even felt relaxing at times...which is a huge challenge with 3 young girls who all have needs to be met pretty regularly. We have to admit we were a bit envious of my Brother's family who has 2 young kids, but those two kids pretty much fend for themselves, and only need a little reminder here and there, and of course the occasional reassuring hug! Addy LOVED playing with her cousins and is still asking to go Camping again with Kellyn and Andrew (her cousins). Maya has a new passion for black cement pathways...not sure why, but every time she starts walking on one, she loves it and hates to stop walking...at times I have to jog to keep up with her, because I can't simply yell to tell her to turn around and come back:-) Teya had her first dip in the pool and loved swimming with her sisters.

Maya:
Maya has a few weeks at home and then for the month of July has summer school Mon-Thursday mornings from 8-12noon. It has been fun having more time with her, but to truly engage with her can be challenging with my other two girls around seeking attention. Maya will be evaluated this next month by the HANDLE Institute, to help us seek out some therapeutic alternatives to help us work on her numerous sensory processing difficulties. One area that is new to us is a possible vision difficulty. While she has not been diagnosed with one, she fits the criteria for it, and has done well with some of the therapies to help with vision (it is called Cortical Vision Impairment). My mom and I are researching and trying to find toys that will help her attend and engage in activities more...AND it seems to make a BIG difference! I also have tried to feed Maya on her feeding pump at meal and snack times and she is able to eat MUCH faster than ever before AND is tasting a TON more at meal and snack times...so fun to see her explore food! Maya will have a lot of Dr. appointments soon as she is about to turn 5 years old...can you believe it? So lots of regular annual appointments to look forward to. Otherwise, Maya loves the summer because she LOVES sprinklers, being outside, swinging on swings, and sliding down slides, and best of all she is at her healthiest- no bad colds...she is a very happy girl these days!

Addy-
Is still 2, and in the throws of potty training. She just welcomed baby sister Teya into her big girl room, and is LOVING it...no more tears of loneliness at night...she is so happy to have company...and really she will now choose sleeping with Teya over having anyone else sleep with her...pretty cute! Addy is in love with her big girl cousins...Katya, Sonya, and Kellyn. It is so fun to have girl cousins in her life who play so well with her and are such wonderful role models:-)

Teya-
Is now a year old, but she wishes she was 2. Nothing makes her smile and laugh more than Addy and Maya...she loves her big sisters. She likes to sign like Maya, and try to sit on the potty when the big girls go on their potties. She loves to eat, sign and say something that sounds like "Shasta" (our dog) and loves to say "Uh-Oh" every time she PURPOSEFULLY drops her sippy cup onto the floor. She is such a joy, and such an easy-going kid...she continues to be our "lowest maintenance kid"...who knows what will happen when they become teenagers, but for now I am so grateful for her disposition!

Dean and I-
Are well. We love the summer and being outdoors. We have dreams of sitting on the reclining patio chairs drinking lemonade and chatting after the girls go to bed, but that has yet to happen...maybe tonight?!?!? We have been in the throws of remodel here at the house, and amazed at how different our house looks already. We remodeled our kitchen, and are going to paint the outside of our house, and re-do our backyard....it is very exciting!

Maya

 
 

Addy

 
 
 

Teya

 
 

Seattle friends

 
 
 
 

We had a super day with some friends in Seattle. Both Families have a child who is impacted by CHARGE Syndrome. This came just a few weeks after we hosted a WA state CHARGE gathering at our home, and these two families were unable to attend. Since they just live an hour away, we decided to get together. while Maya, Burke, and Cassidy are definitely individuals who are impacted differently by CHARGE, our families share a lot of commonalities. Each kid is one of 3 children, and each of them is the oldest child in the family, Burke is a big brother to his new twin baby brothers, and Cassidy has a younger sister and a little brother. And of course you know Maya is the oldest of 3 girls. We certainly had fun with our friends. My highlights were holding twin babies, and being pretty amazed at how well Chris and Nate (Burke's parents) manage their three boys...they are certainly one amazing team! My other highlight was watching Cassidy "pose" for the camera. Everytime I pulled my camera out she struck the most beautiful pose, with the most amazing smile. I always love visiting with parents who deal with the same challenges we face raising not just a child with special needs, but children so similar to Maya...we can talk feeding issues, breathing issues, communication concerns, growth challenges, surgeries, visits to Seattle Childrens, and best of all the huge stides our kiddos make despite their challenges. thanks for a great visit you all! Hope to see all the families again in the Fall!

Dad in DC

Well, last week Dean was on a trip to Wash. DC several days, and boy am I releived to have him home. It started with him leaving a few days before my brother preached his first sermon this past Sunday at Bethany Presbyterian in Seattle and of course we all needed to attend, and did not get the kids to bed until 10:30 that night (my parents were here helping out). On Monday I did my child care as ussual, but Teya's temp climbed to 104 and was not going down so her Dr. wanted her seen and I left my mom in charge of 4 kids...what a super star she is! Then on Tuesday, Addy had a speech apointment (just and evaluation that turned out fine) when I received a phone call on my cell phone from Maya's school...Maya had split her eyebrow on the side of her favorite rocking boat at preschool (yes she CAN get in and out of it on her own, but this time her foot got stuck, and with her poor balance that was enough for her to trip and land her little head on the corner of the boat). We had another problem.... my Mom was with me, Addy and Teya in our new mini-van (did I mention we just got an 08 Honda Odyssey...yes very exciting), but Maya's g-tube had opened on the way home from seattle the other night so her car seat was not with us and at home with the cushions in the dryer. So Mom retreived Maya from school, Dad drove the car seat (with one strap missing...OOPS)to the therapy office, and we all hung out in the parking lot where I called her doctor to see where I should take Miss Maya. Fortunately, they do stitches at her pediatrician's office, so we were able to avoid the ER (YIPPEE!) and actually once we got there, Maya was able to just have it glued shut rather than stitches. I almost passed out once and left the room with Teya, leaving Grandpa with Maya and my Mom dealing with a two year old in the waiting room...who was NOT AT ALL HAPPY about our excursion!!! Can you believe I get light headed with a deep wound after all I have done with Maya!!! I can't! WOW! I guess I still can get queezy with blood. Anyways, yesterday was much less eventful and my dad took us girls out for lunch, and that night picked up Dean from the airport. Addy woke up to pancakes with Daddy this morning and is on cloud nine...I think the two of them cuddled on the couch for an hour today...so cute. He is working half days today and tomorrow to get ready for a much smaller trip next week. His Mom will be here and our neices will be around, so will Maya since it is Spring Break. I really must say how grateful I am for Dean, we all REALLY missed him and we are glad that he is home for the weekend, and then after WEd of next week he really does not travel much! YEAH!

Oh, and Maya is finally starting to tolerate C-PAP, but we have had someone seeping with her to make sure she does not pull it off, but so far, I am optimistic!

New rooms

It has been a busy few weeks at the Kelly house. Not only is Teya crawling everywhere, including now up the stairs (too bad she can't go down safely yet), Addy is potty training (and having success), and Maya continues to improve communication-wise and continues to have frequent doctor appointments....we just decided to do a little remodeling and switch the girls rooms around...you know, because we have nothing better to do with out time:-) Addy is now living upstairs (where someday soon Teya will join her), where she has a new little built in house and cubby for her little bed...the upstairs room is also now orange and pink her two favorite colors...and YES, she has a definite prefence to those colors!!! Maya is once again back downstairs in her yellow butterfly/bug room where I am already enjoying the convenience of the bathroom that is connected to the room...with all her equipment and feeding supplies it is very hand to have nearby....now if we could just get a refidgerator down there...hmmm... Teya is now sharing the room next to the master with our computer and guest bed/futon. This will hopefully be a temporary placement as I know Addy already wants her little roomie:-) Otherwise we are doing well...car shopping for a new mini-van, deciding about school placement for Maya next year (kindergarten or preschool another year, or maybe a combo), and I (Marty) am not sure I mentioned it before but I am now doing some child care a few days a week...which I really am loving!