Maya is signing!

It has been a fabulous summer so far! Our greatest excitement revolves around Maya's new signing skills! After 7 years of signing to Maya, showing her pictures, and giving her tactile input, and hoping for communication to be expressed through sign language, we have finally begun to see Maya consistantly sign. Maya will now spontaneously sign "more" for any of her favorite vestibular/ sensory activities (swinging, spinning, bouncing, jumping on the trampoline, bubbles, and even occasionally tasting). Maya has been healthy for 1 year now and her growth is taking off! Signing, tasting, smiling, engaging in toys and interesting objects, approaching people she is interested in, riding her trike and then there are even the not to so fun events like bed time, where left to her own devices she will pull out her trach, wrap herself in all her bed time tubes, reset her feeding pump machine, open her feeding tube port so that food spills all over her bed....but of course we will take it all, as all these new behaviors are signs of developmental growth.

Another wonderful aspect of Maya's expressive communication is her sisters' desire to communicate and engage with Maya. Addy (almost 5 now) takes great delight in Maya's expressive happiness...loves giving her favorite toys, helps me every night putting her to bed and give her medicine, and always hugs and kisses her before the lights go off, and often says "Mom, Maya would like this" or "Mom, Maya is coming too, right?" I love our family bike rides, where all three girls can participate, or tire swings that fit 3 perfectly and the girls are always thrilled with Maya's love of swinging and spinning...when I stop, all three of them take turns signing "more" to ask for another round of tire swinging.

Maya triking followed by Teya

At Chamber's Bay ...despite Maya's expression, she does love the wind!

On our Father's Day hike...Addy showing Maya a flower

(she would sign "flower" just so that she could then watch Maya sign "flower" in return)

Addy loving her sister...

This summer has already had some wonderful highlights:

Biking at Chambers Bay (Addy started riding a 2 wheeler in the spring and Teya keeps up on her training wheels).



Time with the Roystons (Matt (my big brother) has accepted a call to pastor a Presbyterian Church in Juneau, Alaska) we are spending every moment we can with them before they move in September.


Maya, Grandma Fran, and I attended the Biennial CHARGE Syndrome Conference in Orlando...we learned a ton and made friendships and connections that are priceless! We also had a blast with Burke and Max (our buddies from Washington who also have CHARGE) and their parents...it was a terrific eperience!


Addy went on her first backpacking adventure with Dean and some friends...she loved hiking, setting up camp, swinging from trees, playing at the lake, balancing on logs, and good old time with Daddy...she will definitely be backpacking again soon!


Our family attended our annual neighborhood/ small group vacation in Cle Elum...12 adults and 18 kiddos (all 7 years and under)...what a blast!


Teya took every chance she could to bury herself in sand (or in this case have Daddy bury her). This goes along well with covering her self in water, dirt, peanut butter,among other substances!


Lots of time with the big Kelly Cousins while Babu (Dean's mom) and Giampa visited!


Lots and lots of Babu hugs!


Next week we are off to Sunriver with the Royston side of our family...this has been such a dramatically better summer than our last two...what a gift for our family...we feel truly blessed!

The new rythm of Life

So the Christmas Holiday has ended, family has been to visit and returned home, I am now watching kids on a regular 1-2 day a week schedule, Maya is at school full days again, Addy is still in preschool (thanks to some financial miracles), and Teya is taking on the YMCA swimming pool in full force. So this is the new rhythm of life. It is rainy and cold and we have had our share of snow considering we don't get a whole lot out here. We have a great crew of nurses that weave in and out of our home to care for Maya. I would say that we are no longer in "survival mode", but just living the daily routines of life. Perhaps it is unique in many ways, but I finally feel more "like" other moms than "unlike" them. I am tired much of the time, I schedule my life around the three most wonderful kiddos in the world, I wish I had more time with Dean (though we did get away overnight just before Christmas!), I would love to find time to read or to write, and I have moments of wondering what my house and my life will be like when my 3 girls are in school full time...that may be 2 and 1/2 years from now...not too far away! To be honest, I bet most Moms go through this. Sure...I have other concerns, that many moms do not. But I am so grateful that I do HAVE friends who are going through the journey of CHARGE Syndrome too...I am not alone!

It is amazing to me that I now have time to write on my blog! It is amazing that I am ONLY on the phone 1-2 times a day with someone related to Maya's care (school, nursing company, medical suppliers,doctors offices, etc...). In "survival mode" I was on the phone constantly during the day working out all the kinks in the system, and I think they are FINALLY working themselves out. In this new rhythm of life, Maya is doing great! She is healthy (having overcome a variety of colds and germs...even a tough one that gave Dean Bronchitis), she has a "content/ happy" spirit about her...she is smiling more, and more interested in being with people than being alone, she has learned to use my hands to communicate...she makes my hands sign "more", or "all done" or "good morning"...I can sign questions to her and she will correctly answer them taking my pointer hand and directing it to the correct object (i.e. where is the mitten, the circle, the cat?, etc)...she still loves her trike and when the weather is nice, we make sure she gets to cycle around the block...there are even days where she will keep her panties(that Grandma made, like cloth diapers) dry all day...it is rare, but it happens (we are more trained than she is, but she knows what to do:-) ). Maya just had a round of many doctor appointments and after this month, there is not ONE doctor appointment on my schedule...a true miracle... at least until the follow ups are due in 6 months. Yes, Maya still has her new trach and she has her feeding tube, and it is hard to imagine thinking about if she will ever get them out. Maybe??? No one has ever told us "NEVER." But right now I don't have a lot of emotions tied up with her trach or feeding tube. She is happy, she is healthy, she sleeps through the night, and is making more progress developmentally than ever before...I am a happy Mom!

Addy is doing remarkably well. She loves that her life is more stable this year, more of a routine, and loves to lay her clothes out the night before, pack drawings for her pre school teachers in her backpack that is carfeully hung on it's proper hook, and make sure everything is in it's place and just so...that does not mean she is super tidy, she just likes things a certain way. She also likes everything to be vibrant and a bit crazy...lots of color on her clothes, her drawings, and the most creative play adventures around our house with her dolls and peeps...but more so with her sister...playing "birthday party" (this is acted out by decorating a pillow with polly pocket dresses as a cake with candles and oodles of toys wrapped in blankets to be opened) or "Santa Clause" or going to "school"...or my favorite was "cooking the chicken" (using Maya's floppy pillow) and sliding it in the oven (under our rocker) YES, this play is a direct result of watching Grandpa cook! Addy is starting to read many familiar words, can count quite high, and has a genuine love of story telling/ listening and learning.

Teya is happiest, well, when she is well fed, well rested and has someone to play with. She was that way last year during all the chaos in Seattle and she is that way in the rhythm of life. And she spends about 60% of her day spinning with her arms outstretched singing a song, much like Maria on the mountain tops in the musical, The Sound of Music...whether it's our living room, at the park, or walking through a parking lot, she is happily carrying a tune with her arms wide open. Despite her small stature, she awakens each morning remarking to whoever will listen "I'm taller! I'm bigger!" To which Addy bursts into tears..."Mommy, Teya says she is bigger than me! and she's NOT!"...Which is NOT what Teya is commenting on...she just wants everyone to know that today she is bigger than she was before. But, I do think she enjoys ruffling her sister's feathers a bit:-) Teya is also growing quite an imagination herself. Having little fear, she will often stop suddenly after sprinting across the hall, look up at me and declare with very wide eyes "There is a big SCARY dragon coming!" and race up the stairs! In the pool at the Y she lets all the kids know that "there is a HUMONGOUS Shark in the water!" In addition to dancing and singing a musical all day long, we have discovered that she really enjoys swimming...as do I...it is my special date with her each week, and a very wonderful time for her and I to just be "the 2 of us"!

Dean has been a rock star! After finishing up 6 grants just before the New Year, he has managed to return to a stable work, work out, reading, and super dad routine! Since the New Year began, the stress level in our home has declined and there is an increase in laughter, hide and seek/ tickle games, wild adventure stories with the girls, and good conversations with me after the kids are in bed. Dean's year long work with a volunteer group to make recommendations to the legislature to improve deaf education in WA State has culminated in a very impressive 85 page report with much of the information coming directly from parents, educators, and interpreters. With a $4billion shortfall in the state budget we’ll see what if any of it gets passed into law, but I’m so proud of his work and the many others who committed much time and resources. Dean continues his work as a parent advocate on the board of Hands and Voices (another group working for improvement in the lives and education of deaf and hard of hearing individuals) . Together Dean and I are working to improve education at our local School for the deaf and hard of hearing and are learning a ton from other parents (many whom know deafness first hand) and are excited for these new relationships and the impact we could have on Maya's education and many other wonderful students.

In the next few months I am undergoing a variety of "research" and work to determine what I might do career wise in the years to come. I just renewed my teaching certification and am looking into areas that work specifically with children 2-6 years of age, and special education is not out of the realm of possibilities either. We will see what God has for me, but am enjoying the journey for now! Thanks for reading, if you made it this far, you are truly a wonderful friend!

10th anniversary

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

Home at last

We are all so grateful and happy to be home. Life at Seattle Childrens has quickly tranformed into life at the Kelly home and it is feeling far different that anything we have experienced before. I think the most surprising part of this new journey is that we are in a transition period that could last several months. We are getting to know 9 home care nurses, we are learning about Maya (who seems to be an ever changing kiddo in terms of development and care), we are learning how to incorporate the rest of our lives into a world where we cannot take Maya out of the home (except outside and to Dr. appoinments), and cannot leave Maya with any of the nurses until we trust and know them, all the while having Dean keep his normal routine at work, getting Addy to and from preschool 2 times a week (so thankgful for my carpooling buddies!!!), addimg in home therapy and schooling to our routine, going to church and small group, AND somehow teaching these nine nurses how to communicate with Miss Maya. This is a bit overwhelming and yet necissary. I am so grateful for the extra help in terms of Maya's care as it is VERY substantial, yet she often refuses to cooperate with people who cannot or do not communicate with her. She has absolutely no hearing so one must use pictures or ASL to let her know what is about to happen, and Miss Maya is asserting some control over the situations she finds herself in and often does not like these strangers doing things to her often in varying methods, as even giving medication can look different from one person to the next. I am learning more and more how truly comfortable she is with me, which is a blessing, and yet wishing everyone could learn ASL in a day so that she would be more comfortable. Any child would be distressed by strangers caring for their medical and personal needs, but these strangers often do not communicate with her. I am learning to be an interpreter/ Mommy which is no easy task with an almost 2 year old and a 3 and 1/2 year old trailing behind my every move. On the bright side of things my little girls are quickly learning that sign language is very important to their relationship with Maya. One very wonderful part about the past two months is that with Maya's trach she is sleeping better, breathing better, is far happier, and more interactive and energetic. While she still is fatigued by the end of the day and overstimulated by the change surrounding her, she plays hard, and is having lots of interaction with her sisters and healthy neighbors that come outside to play with us.

Addy and Teya have simply been super stars through all this. They love their new bedroom next door to mommy and daddy, they love the nurses, they love joining Maya up on her new big girl bed, they love playing doctor and taking the pretend elevator to the 4th or 6th floor (like they used to daily in Seattle at the SCCA House and the hospital), Addy transitioned very smoothly back into preschool, and all three girls are all in varying stages of potty training, they all have peed on the potty (Addy all the time) and yet Maya is the only one who has pooped on the potty... Addy promises this will happen when she turns 4! Addy frequently asks when the Grandparents are returning and whenever Teya asks "Where's Grandpa?" (which she does several times a day), Addy responds with "In Portland with Sunny!" Sunny is their dog, and I still am not sure if Teya is asking for Grandma or Grandpa as she is quite fond of both of them, but calls both of them Grandpa...strangly enough she definitely knows her other grandma because her name is "Babu". Addy aslo asks if it is a long time until Maya's heart surgery and if Maya will get sick again. She never seems very bothered by these topics, just very curious. I think most of all, Addy would like a lot of warning before another big adventure as she really needs to know what is happening today, and tomorrow, and in fact every day of the week. She will start with Monday and go through each day of the week making sure she knows what is happening that day.

I think Dean has earned his super Daddy award as well, and savors every moment we are together as a family in our hown home. When he gets home from work he just soaks in time with his girls and is learning all of Maya's new medical equipment like a champ. We both laugh at how overloaded we are with information right now and how we wonder if we always hear what people are telling us...so I apoligize if you sent us an email or called on the phone and we never returned it...we are just really overwhelmed and figuring out our new routine, not to mention we are pretty exhausted to. Despite the fatigue, I must say we are in fairly good spirits and just treasuring family time, our home, our neighborhood, our church, and the many amazing people God placed in our lives to help us through this past year. We also know that you are the same amazing people who will stand beside us as we transition, and as we establish a new "normal" for our family, and who continue to shower us with grace and support. I cannot tell you how grateful we are for the many people who have supported us with letters and emails, child care, housing, financial help, transportation, with gifts and outings, and visits at the bedside in the hospital...we will forever be grateful to each of you!

Hospital Pictures

Special car from the Bogner's Church small group...thanks so much all of you!


Addy helping Maya with her Easter Basket

The Kelly family on easter morning

Getting ready for home

Maya is doing really well. Although she is trached and unable to be capped with her current trach (and will need this trach until her esophogus can be dialated), she is signing a ton, very active, and is in terrific spirits. Grandma and Grandpa Royston along with Dean and I now have just 3 more trainings before we are cleared to take her home. We finally were approved for nursing care at home through our insurance, and we are waiting to aquire nurses for the home. Otherwise Maya is healthy enough to go home. We should be home in the next few weeks, and Dean will spend some time reorganizing the house so that Maya's room is nurse friendly again, and the little girls can sleep near us, with a play room above Maya's room. We have had a good stay here in Seattle since Maya's recovery from trach surgery. The doctors continue to be terrific with her, as do the nurses and Respiratory Therapists. Maya is getting daily activity from either Physical Therapy and an ASL interpreter or a volunteer and an interpreter. We are hoping to have a video conference with her class at school so they can sign to her and see her live, and ask her nurses questions. Maya has frequent walks throughout the hospital and gets lots of positive attention, especially from those who saw her when she was REALLY sick. Addy and Teya must think this is all one big exciting adventure. They love staying at the SCCA house and get a lot of attention since they are the only kiddos there right now. They love swimming with me at the hospital pool and playing with the volunteers in the playroom during trainings. While I think they will be happy to go home, Addy says she would rather not:-) They also have been blessed by so many friends with gifts, toys, and new activities to play with...and of course Addy, the fashion DIVA is most excited about her new "Rock Star" outfit she received from a wonderful small group of friends here in the Seattle area! Must say, considering how hard this has been, we have come through very well. We will greatly miss all the extra Grandparent and Babu time, as I know they will too. BUT, it sure will be terrific to get Maya home and finally ALL be together as a family again! AND, be back home in Tacoma!

Maya is doing well

Maya is now on the pulmonary medical floor and is doing well. She is taking trials off her ventilator with great success. Today she went on her first outting in the wagon and enjoyed some beautiful Seattle sunshine. After 30 minutes she was ready to return to her bed to rest and to watch her Signing Time dvds. The rest of us have moved into the SCCA house in downtown Seattle, and one person is rotating nights at the hospital with Maya. While we do not really get rests we are swapping time between Maya and time with Addy and Teya...not sure which one is more restful, probably being with Maya now that she is healthy. Grandma and Grandpa Royston are staying in Seattle with us, and Dean is commuting to work from Seattle and finding time to be with his girls...it is hardest for mom and dad to get time together, but this is a short season, and in a month or so we should be back to our routine, which hopefully will include some regular date nights. We added a sweet little neice to our family this last month and are thrilled to welcome Hannah Burke to our family...she is such a doll...love her!!!