Fall update:
Happy 10th Anniversary Dean- Believe it or not, I have been married to the same amazing man for 10 years now. I can honestly say I know him much more and love him more deeply now than ever before. Our marriage has been a foundation that has gotten us through countless hospital stays, 5 longer than 2 weeks and 2 longer than 2 months (and then there were our own hospital stays). We have had three wonderful little girls, accounting for lots and lots of daipers and even more sleepless nights or should I say sleepless months. I do not believe that we have survived our marraige and last 10 years alone, no 2 people can do it on their own, and I am grateful to our amazing family, neighbor hood, and church communities as well as our faith in God that truly has kept us strong for 10 glorious years. I love you Dean...you just are the most amazing human I have ever met and I am priveledged and blessed to be your wife.
Maya- Is now 6 years old. She once again is equipped with a trach tube, a new and healthy heart, and a set of lungs that are inflated and strong. What a blessing! We spent the summer "training" her for all day school and it is paying off. She has battled her first cold without oxygen and no days home from school. She has slept through the night for almost a month straight...an unheard of phenomenon for her...I think the girl is benefiting greatly from an extra airway and C-pap support at night...she never went more than a night or two without "night parties" prior to her new trach...so, now she also has more energy, a longer attention span, and a massive desire to ride her trike around our neighborhood at warp speed...okay, not really, but even Dean has to jog to keep up with her. Last weekend she enjoyed a 3 mile hike with the entire family and some friends...while the steep grades required assistance she did almost as well as Teya (our hard core 2 year old) in terms of walking.
Although Maya's health is good we are facing new challenges on the ever winding rollercoaster of her life. She is currently in the application process to recieve "deaf-blind" services. While Maya does not have colobomas (a feature of the eye many children with CHARGE syndrome display), Maya does seem to have vision issues, though her communication is not good enough to perform behavioral testing to know how extreme the issue is. She has acquired some new services and is receiving extra support at school and we have begun a more tacile form of ASL, which she REALLY seems to be connecting with better. It is obvious to me as she is getting stronger and healthier that her vision is a barrier for her learning that we need to address...I continue to be on a steep learning curve.
Addy-
Who likes to be acknowledged as "Addision" at preschool and "Addy" at home is doing really well. Her love for learning amazes me and she picks up learning so fast and has such enthusiasm for it. She spends her days playing many varieties of "make believe" games with her "peeps" (doll house people) and animals and little sister and friends. She loves making efforts at monkey bars and loves playing on the bars at her YMCA gymnastics class, she enjoys swimming at her own pace and with mom or dad, and adores her preschool teacher, and has a deep love for her friends. As my neighbor said today as she ran into my house for band-aids and cleaning spray for her son who hurt his ankle "Addy is a nurse in training." Addy enjoys helping me get Maya ready for bed and loves trying out all of Maya's medical supplies (yes we then have to clean them all). She really has a compassionate heart for Maya and has begun to interact with Maya more and more and get excited over even the "small" things...like "look Mommy, Maya is laughing at me, Maya likes this, we have to sign "good bye" to Maya." Addy also has best friend in her younger sister Teya...I have no idea WHAT they would do without each other!
Teya-
Adores her sisters. She loves to sign to Maya and wants more than anything to be playing, dancing, or singing alongside Addy. While Addy is at preschool we go swimming together which is super fun and special, but she is ALWAYS asking "Where'd Addy go?" Teya is definitely my "go getter" and my most outgoing (which is not saying too much), and is content at times to be alone playing by herself and is not at all concerned being alone in the upstairs room that frightens Addy so very much if NO ONE IS WITH HER! Teya LOVES balls and galloping through our house singing very humorous versions of songs that are missing many lyrics. Though many may not believe it, at home she is full of verbal language, most often not in the correct grammatical formation, but about the cutest words a person could ever hear. She has a fun silly side to her and an absolute LOVE of babies. She already loves to scribble and play (or eat) play-doh. She is a fairly easy going kid, and a ton of fun to be around! I really love my 2 mornings a week with just me and Teya it is VERY special.
Dean and I are well and feeling the business of fall. I am teaching Sunday school twice a month, doing childcare for a friend once a week, and taking care of the girls and Maya's various medical and educational needs. Dean is in a season of grant writing at work and just getting the fall going at the schools his programs work in. He has a week long training inBoise coming up. We are looking forward to a trip to Portland in about a week, and hopefully a winter of health.
Hope you all are well!
Marty Kelly
