6/22/09
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!
3/26/09
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!
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!
3/4/09
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!
2/6/09
Amazing girls
Maya:
So I cannot tell you how amazed I am with Maya this week...I am not the only one...her teacher is pretty amazed as well! Two weeks ago we ALL caught a nasty virus which gave Maya pnuemonia...with antibiotics and breathing treatments and some oxygen at night, Maya avoided the hospital, and managed to overcome the virus really well. Last week at school was a bit challenging for her, BUT this week she is back to herself and feeling better than ever! Maya gets off the school bus at 4:00 or so, goes potty and then has family time until 8 during the week. It is strange to really only have 4 hours a day with her. It has not been too much of a change since the nurses were here until 4 PM each day last year. And now, we have her all to ourselves on the weekends and Holidays. So, Maya is actually showing some great improvements in communication. She has continued to make great strides with motor skills, but communication has continued to be a huge area of concern...really not much improvement over the last two years. Well this week has been so FUN! Maya gets off the bus and goes potty VERY consistently:-) Well, Addy thinks Maya is now cool, since she is giving us all a lot more eye contact, so Addy likes to play "copy cat" with Maya...so she sits right down next to her on the potty and joins in on opening her backpack and looking for Maya's daily work. She even kicks her feet and stims her arms up and down like Maya...AND Maya LOVES it!
Then we have some down time and dinner (which Maya insists on being a part of even though she is not an oral eater yet. If we decide not to sit her at the table because she is really engaged in a toy (which is rare), she eventually notices us at the table, walks over, and stands by her chair until we put her in it). She watches us all so intently and gets super excited every time we sign to her. She is beginning to follow directions like "sit down" "stand up" and "come". And she loves to watch us sign about the food we are eating at dinner time!
After dinner, daddy does clean up and us girls get to play. Two nights in a row we played chase initiated by Maya. She does her best to "run" down the hall and if I run in front of her she will chase me. Then I will chase her and tickle her, which often caues some great laughter from Maya. Addy has discovered how fun this is and joins us. When I try to tickle Addy she says "get Maya". If Addy decides to change activities, she often wants Maya to join her...so cute!
Maya's eye contact is getting so great and she is really engaged in what we are signing, either watching intently or responding with excited body language. She even has done more purposeful signing too...she will sign "more" when we are finished reading her bed time stories, she seems to be waving "hello" some to her sisters, and her teacher is starting to see her label more objects at school. If I hand over hand help her sign something she will often then do it herself when I remove my hands.
At school Maya is independently going to her chair and sitting when directed by her aid or teacher, she walks independently to PE and Library from the class room with occasional redirection instead of hand holding...this is HUGE!...I even saw her put a paper into her backpack by herself when I went to observe on Tuesday! Also, Maya seems to be overcoming some of her fear of large groups...she is more relaxed now in large groups and is more willing to participate in groups rather then retreat and hide in a corner and read books.
Our other girls are simply amazing too. We are working VERY hard at trying to get Addy to sign with Maya, and I am finally seeing her be excited to communicate with Maya and include her in things...which is really fun (I am sure it has a lot to do with Maya's new interactions with her). Teya is simply adoring her big sisters and stops at nothing to be with them. She has figured out how to pull to stand next to Addy and Maya when they are at the train table, or crawl around many obstacles to get to Addy working on a jigsaw puzzle (which Addy does NOT like, since Teya likes to eat her puzzle pieces:-) ). Overall, I am really enjoying this new stage where the girls are really aware of each other, and most of the time enjoying one another's company. Of course they are sisters, so they certainly have their moments with one another. We are very happy to have 3 happy, healthy girls. Now, if we could just get Maya to wear her CPAP machine at night time we could get her trach stoma (hole) sewed up!
So I cannot tell you how amazed I am with Maya this week...I am not the only one...her teacher is pretty amazed as well! Two weeks ago we ALL caught a nasty virus which gave Maya pnuemonia...with antibiotics and breathing treatments and some oxygen at night, Maya avoided the hospital, and managed to overcome the virus really well. Last week at school was a bit challenging for her, BUT this week she is back to herself and feeling better than ever! Maya gets off the school bus at 4:00 or so, goes potty and then has family time until 8 during the week. It is strange to really only have 4 hours a day with her. It has not been too much of a change since the nurses were here until 4 PM each day last year. And now, we have her all to ourselves on the weekends and Holidays. So, Maya is actually showing some great improvements in communication. She has continued to make great strides with motor skills, but communication has continued to be a huge area of concern...really not much improvement over the last two years. Well this week has been so FUN! Maya gets off the bus and goes potty VERY consistently:-) Well, Addy thinks Maya is now cool, since she is giving us all a lot more eye contact, so Addy likes to play "copy cat" with Maya...so she sits right down next to her on the potty and joins in on opening her backpack and looking for Maya's daily work. She even kicks her feet and stims her arms up and down like Maya...AND Maya LOVES it!
Then we have some down time and dinner (which Maya insists on being a part of even though she is not an oral eater yet. If we decide not to sit her at the table because she is really engaged in a toy (which is rare), she eventually notices us at the table, walks over, and stands by her chair until we put her in it). She watches us all so intently and gets super excited every time we sign to her. She is beginning to follow directions like "sit down" "stand up" and "come". And she loves to watch us sign about the food we are eating at dinner time!
After dinner, daddy does clean up and us girls get to play. Two nights in a row we played chase initiated by Maya. She does her best to "run" down the hall and if I run in front of her she will chase me. Then I will chase her and tickle her, which often caues some great laughter from Maya. Addy has discovered how fun this is and joins us. When I try to tickle Addy she says "get Maya". If Addy decides to change activities, she often wants Maya to join her...so cute!
Maya's eye contact is getting so great and she is really engaged in what we are signing, either watching intently or responding with excited body language. She even has done more purposeful signing too...she will sign "more" when we are finished reading her bed time stories, she seems to be waving "hello" some to her sisters, and her teacher is starting to see her label more objects at school. If I hand over hand help her sign something she will often then do it herself when I remove my hands.
At school Maya is independently going to her chair and sitting when directed by her aid or teacher, she walks independently to PE and Library from the class room with occasional redirection instead of hand holding...this is HUGE!...I even saw her put a paper into her backpack by herself when I went to observe on Tuesday! Also, Maya seems to be overcoming some of her fear of large groups...she is more relaxed now in large groups and is more willing to participate in groups rather then retreat and hide in a corner and read books.
Our other girls are simply amazing too. We are working VERY hard at trying to get Addy to sign with Maya, and I am finally seeing her be excited to communicate with Maya and include her in things...which is really fun (I am sure it has a lot to do with Maya's new interactions with her). Teya is simply adoring her big sisters and stops at nothing to be with them. She has figured out how to pull to stand next to Addy and Maya when they are at the train table, or crawl around many obstacles to get to Addy working on a jigsaw puzzle (which Addy does NOT like, since Teya likes to eat her puzzle pieces:-) ). Overall, I am really enjoying this new stage where the girls are really aware of each other, and most of the time enjoying one another's company. Of course they are sisters, so they certainly have their moments with one another. We are very happy to have 3 happy, healthy girls. Now, if we could just get Maya to wear her CPAP machine at night time we could get her trach stoma (hole) sewed up!
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