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!!!

Maya's trach is back in

Maya had her trach replaced this evening in a very uneventful and fast procedure. We are VERY grateful for the successful surgery and now the trach reality will settle in. At least it all seems familiar...new type of trach...it is cuffed this time, AND she may need some pressure support from CPAP or BiPAP for a bit to help her lung....which is at about 75%. We are happy to be on this side of things and look forward to the process of getting her healthy and home.

Maya is getting her trach back in

Well, it is a sobering night for our family...including the extended members of our family , as we plan for Maya to get her trach replaced tomorrow. We discussed with a team of Doctors on Thursday and made the decision over the weekend that Maya's chances of recovering from her collapsed lung and attaining full health again are greatly increased with the access a trach gives her to deep suctioning and positive pressure (through C-PAP). Maya's heart surgery and esophagus surgeries will be postponed until her lungs improve and her airway is safe again. Maya will be in the ICU recovering from the trach surgery at least 5 days and mostly sedated to help the trach site heal. We have now been in the hospital for 30 days which qualifies Maya for a medical coupon giving her access to nursing care. While we are at the hospital helping Maya get better and brushing up on trach care we should be on the floor starting next week and may move the family closer to the hospital since my mother in law heads home on Sunday...Medicaid should pay for that support, and we would only have to taxi the girls back and forth a few miles rather than 30 minutes each way. We have been so blessed by the Anderson Family who has been housing us in Edmonds, supporting us, praying for us, and just being super hosts to our family and dog:-) The greatest issue that most likely will keep us at the hospital up to another month is acquiring nursing staff to care for Maya at home. While the funding will be approved, the nurses need to be hired and staffed before Maya can come home.

For now I am focusing all my energy into tomorrow with prayers and optimism that Maya will have a successful procedure and that her lungs will stay inflated and not pose a threat to her health during the surgery. Also pray that her body will tolerate the anesthesia, and not react negatively to it. She is already intubated with a breathing tube in place which cuts down greatly on the anesthesia she would need for the procedure.

Dean and I are well and our little girls are doing remarkably well with all the change and craziness of the last month. The girls LOVE the Children's playroom at the hospital and swimming in the evening a few times each week. Most of all, I am grateful that they have each other...MOST of the time they just LOVE playing together. Dean and I could certainly use more time together, and would love something else to talk about other than medical decisions and plans for the next day and week...but we are doing well too. The super Grandparents are all so amazing and have sacrificed a great deal to support us and Miss Maya. We are also so proud to announce the birth of our beautiful niece Hannah Burke who weighed in at a hearty 9 lbs 4 ounces and mom and baby are well. We thank you all as well for your prayers and support...the strength we have received from our friends and family is truly God's greatest gift to us during this challenging season!

Please feel free to send this on to others...Hoping to send you great news soon!

Marty and the Kelly and Royston Family

Procedure tomorrow

Well, here we find ourselves once more at Children's hospital in Seattle. Maya caught a horrible virus and as she recovered the Drs ran a test to see perhaps if something is causing her to not swallow her secretions, since there are so many. After a procedure Maya, Grandma, and I hope we never go through again, it was determined that the upper esophageal sphincter near the epiglottis is so tight that she is not swallowing much if at all. Tomorrow, her ENT will sedate and scope her esophagus to determine why, and hopefully dialate her esophagus sphincter to allow her to swallow again. Afterwards we hope to spend a day or two here recovering and then get home to prepare for open heart surgery. We now have been to Children's 3 times in the past 3 weeks spending minimal time at home...which has taken a toll on us all. We are anxious for Maya to be healthy again and stable and in a place where she can be home and happy for awhile.

A good Day

So today was better than yesterday and my mood has lifted a bit. Perhaps it was just the sunshine or having Dean here all day, or the news I got this morning that Maya is indeed releasing enough CO2 (from her blood work yesterday...something her Drs have been concerned about), but overall Maya was better today as well. We spent a lot of time outside, and for whatever reason Maya's secretions were so much better outdoors. Sure, there were moments of leaving her alone for 10-15 minutes in the living room eating her food, while I got something done, and returned to a girl soaked with saliva...but it was less that yesterday. We never even used the suction machine today...probably could have, but she got what she needed out of her mouth, and there were rarely secretions just gurgling in the back of her throat. Maya was in such a better mood today as well (perhaps it was because she got such a good night of sleep)...she walked all over the backyard checking out trees and ivy and an occasional swing on the glider and slide down our slide.We took the girls to the dog park with Maya in the stroller, and I think she laughed at every dog she saw...what a delight! As I type this the little girls are dancing about the living room and Maya is making the happiest little noises watching them :-) My Mommy heart is happy today with the knowledge that most certainly tomorrow will be different, and trying my best to be okay with that.

Lots of secretions and CPAP

Secretions and CPAP just about sum up Maya's state of being currently, and boy I did not expect this anatomical change in Maya to be so challenging for me. Maya is doing well and her energy is about normal, but the poor girl has to put up with me suctioning her mouth and suctioning her nose and forcing CPAP on her over and over and over again...it is a shock that she forgives me and still yearns for mommy snuggles and attention....the truth is she handles it all from me way better than nurses or doctors, and for the most part she is breathing comfortably and is relatively happy. I am just overwhelmed at all her care...it reminds me of early baby hood life with Maya...needing her at least in ear shot so I can hear if I need to attend to any choking on unmanageable secretions and not being able to take her anywhere public. I must remember that this is a season and it hopefully won't be this way forever. Maya has heart surgery scheduled for March 22nd and until then Maya is in isolation...happpy to have healthy visitors, but otherwise we are getting VERY comfortable at home all day long. My mom will be out to help every other week until surgery so that the little girls and I can escape from the home, drive to preschool, go to the Y, go to the park, or go grocery shopping...or who knows maybe give Dean and I a chance to talk. We wake up and he is off to work, he comes home and it is family time, then bed/ CPAP time and somewhere about midnight I hand off Maya to him and go to bed while he listens for her (I cannot get any sleep listening to Maya, so I am so grateful that Dean can). I am pretty weary and discouraged, and am grateful for my optimistic hubby (he is taking this all in stride and is very proud of Maya and thinks she is doing great without her fistula (hole))...we will just have to wait and see what the future holds, and it is impossible to make any predictions at this point. We are grateful that her stoma is closed and heart surgery is just around the corner. As for now, Maya does not have a hole or trach in her neck, she has VERY thick hard to manage secretions, but her saturations are great day and night, and CPAP is a huge struggle to keep on her...Maya has learned that she only gets to watch Signing Time if she wears her CPAP. We had a great moment 2 nights ago where we got CPAP on her after she was sound asleep...she wore it for about 1 hour...sigh. That has been our greatest success thus far. We certainly hope for improvement.
Thanks for all your prayers, keep 'em coming!
Marty

Still at children's

Maya continues to keep things challenging. Yesterday she had some gurgly breathing that bothered her main Dr, a fever, and some vomitting. We still are unsure as to what the cause of it all is. The Drs still think it could be pain from the procedure and honestly tylenol is helping , and the Drs...think that she may not be having a strong cough for a couple of possible reasons...it hurts (and Tylenol does seem to help)or she is not inhaling enough air for a productive cough. She has had a few good productive coughs today, but they would need to get stronger for her to have the hole closure long term. she is not up to walking a bunch and we cannot determine if that is because she does not feel well or if it is because she is not getting good oxygen/CO2 exchange...her SATs have been great and so have her other vitals...just hard to say at this point...no one is overlu optimistic at this point. Only time will tell. Her Dr.s are pushing for heart surgery as soon as possible, but the scheduling for surgery is out 4-5weeks still...and in order for her to make it with her hole closed until then, she needs to NOT get sick...so she will most liekly be isolated until a few weeks post heart surgery...of course healthy visitors would be welcomed to our home:-) Not sure if we will leave tonight or tomorrow morning or later at this point, my best guess is if she does not get worse, she will go home in the morning...as there is not a whole lot the hospital can do for her at this point, and we will have much better luck with CPAP at home.

Maya's surgery

So far Maya has tolerated her stoma closure and botox injections well. Grandma Fran came with me since Dean is not feeling great and should not be at Childrens with a temperature of cold like symptoms. He and Grandpa who also has a cold are managing the littles, and Grandma and I are actually a bit bored already...which is a good thing! We now just have to see how sleeping tonight goes...will she keep her saturations up and will her sleep apnea not be worsened with the closure??? We have to wait 48 hours before we try to put CPAP on her so she needs to make it 2 nights first. She has had some low heart rates, but nothing anyone is overly concerned about given her current heart condition. She IS getting a bit bored and tomorrow may be a long day for whoever is with her, she is already sitting up, kicking like carzy, and tired of the 3 signing time dvds I brought...will need to get more tomorrow...can't decide if we want to try some CPAP in the hospital before heading home or not...I for one am anxious to be back home, and really I think Maya will be as well. Tomorrow I will meet with the home health respiratory nurse to get a little more CPAP training and ideas to help Maya tolerate it, as that is our next big endeavor with Miss Maya...OH PLEASE OH PLEASE tolerate your CPAP MAYA!!!! May see the cardiologist tomorrow as well and potentially and talk about setting a date for surgery. Please pray for a successful night of breathing for Miss Maya!!!

Surgery tomorrow

I do think Maya will in fact have surgery tomorrow (trach stoma closure adn botox to her salavary glands to prevent excessive secretions) at Seattle Children's, but I am always shocked how procedures and the "getting ready process" for our family never seems to go too smoothly. About 2 and 1/2 weeks ago Maya caught a rspiratory virus...she was fine for a few days and then all of the sudden she was at the ER with a 102.2 temp and we were concerned about pnuemonia. She was sent home and then we kept her out of school for about a week trying to get her better, and give her nebulizer antibiotic treatment to keep her from getting really sick and to kill all the bacteria prior to surgery. So she is well, but germs seem to be all around us this time of year. In order to prepare for surgery these days it is not all about Maya anymore, there are preparations made for the younger two sisters. While Teya is super easy going and finds transitioning to the grandparents and back to parents as caregivers and even a play date thrown in here or there, to be a piece of cake...it is not the same for Miss Addision. Addy's 3 year old emotions are quite sensitive and it is hard for ANY change to occur in her life that may change the routine and structure of her day. She has started a night time routine of her own that we are not excited about...it is called wake Mommy and Daddy up 4-5 times a night and see if they will come lay down with me. And with two nights to go before the granparents take care of her we could not wait any longer to nip this habit in the bud. We decided to try the work of the ever popular "Super Nanny"...no more long time cuddles at the side of her bed or comments about how much we love her and oh if I could actually sleep on the floor of your room I would, but I can't...and really I am not sleeping at all when you wake me up 4 times a night, etc... So at 1:30AM when Addy awoke me for the 2nd time, I said very calmly put her in her bed and stated "good night Addy, it is time to go to be", then I retreated to the couch where I waited for her return. Sure enough merely seconds later she came pitter pattering across the kitchen for me, and there was no more talk, just taking her by the hand and escorting her to her bed OVER AND OVER AND OVER, then Dean took charge until Teya woke up (Let's just say for over an hour Addy was screaming and wailing,,,it was amazing Teya slept through that much of it), and then I took over while Dean settled Teya down in the pack n play in our room. Then it was my turn again...I love how Addy slowly turned silent and just pattered down the stairs where I intercepted her and then without one look in her eye or one word, I took her hand and led her back upstairs to bed. Inside I just kept thinking how proud Super Nanny would be of me and all sorts of weird thoughts that go through your head at 3:00 in the morning. I made it to 3:30, and switched with Dean who at this time was feeling crumby and was worried he was getting sick...ughhh, and he did one more escort with Addy to her bed and at 3:50 the house fell silent and we all got 2 hours of sleep...then of course Dean was up for work and starting Maya's food and of course Addy was up at the crack of dawn too. AHHHH! the joys of parenting. Well, we have one more night of training Addy to bed before poor Grandma and Grandpa take over (My mom has reassured me that training will continue in our absence). And the funniest part of it all is that I am so excited to "get away" with Dean and get a whole night sleep while Maya is carefully cared for in the Seattle Children's ICU tomorrow night....perhaps that is wishful sleeping, as I am most concerned about her night time sleep without her stoma (trach hole) open...but over 12 hours hanging out with Dean, may be a nice change of pace....I guess we have to look on the bright side of everything right? And if this procedure goes well, Maya may tolerate CPAP and avoid having her trach replaced. Maya checks in tomorrow at 12:00 and is scheduled for a 2:00 procedure. We appreciate all your prayers for Maya to tolerate sleep in particular with her hole closed, and that maybe we could be home as soon as Thursday or Friday.

Maya's latest

Well, it certainly has been awhile since I last updated our blog. Last month was certainly a challenging month for us in terms of deciding what we should do to best help Maya from a medical standpoint. Maya is still having issues with her lungs since her pnuemonia in August. One lung has some permanant damage as a result of aspiration (swallowing her secretions the wrong way and into her lungs over a long period of time). Maya ALSO is a risk for medical complications due to the fact that she has severe sleep apnea that we have been unable to treat. She has not tolerated CPAP, however when she wears the machine then air that is supposed to go into her lungs is escaping out the hole in her neck left by her trach. We spent all month determining that most likely Maya would need to be re-trached in order to give her access to CPAP through the trach tube. Then the Doctors discussed that if she were to be trached NOW, they would want to proceed with her open heart surgery (this has been an anticipated surgery) now as they do not want to do it with a trach in...too many risks for infection....secretions from the trach tube getting to the incision site.

So we spent a lot of time debating all of this and were even denied coverage for nursing care if Maya were trached which threw a whole new set of issues at our family...a trach without nursing care would be very challenging to manage. We had almost decided our plan when we met with Maya's ENT last week. He encouraged us and it makes sense to us. To close Maya's fistula (hole in her neck) so that the cardiologists can proceed with surgery (we would do this whether or not Maya is or is not re-trached), but instead of quickly doing heart surgery and immediately traching her...we will wait for her hole to heal and wait a bit before heart surgery (this first procedure is scheduled for Feb. 9th), we will inject Maya with 4 doses of botox to her salivary glands to minimize any secretions. We would then spend every night working hard to get Maya to tolerate CPAP (where the air would actually get to her lungs providing her possibly the best sleep she has ever had...that hopefully will help her to tolerate it). Then in 2 weeks-3month post surgery (before the botox wears off) do Maya's heart surgery...and see how she is doing. If we have to...we will trach her. But, there is an outside chance that a good heart and tolerating CPAP with a closed hole will make her healthy enough to avoid re-traching her, and best of all could help decrease aspirations...our understanding is that a trach could actually worsen Maya's swallow causing her to aspirate MORE.

There is no right or wrong answer we truly believe at this point, but we can give Maya a chance at life without a trach. And we can always pray hard that through her Doctors God can work a miracle of healing in Maya that no one would expect...it has happened before that is for certain! And if we have to, we can trach her again. Meanwhile, Maya is doing TERRIFIC! Hardly a kid who looks like she has compromised lungs, a weak heart, and severe sleep apnea! She lost her first tooth (though we never found it!), is still showing more signs of expressive communication and wants to be with me, Dean and other kids and people all the time. She rarely goes off to the corner to lay down, but rather wants to be a part of the social world and interact with others. She is so amazing, and the more she interacts the more Addy and Teya begin to notice Maya and want to engage with her too.

This season of medical intensity in our family certainly has not and is not concluding any time soon. Addy is learning lessons no 3 year old sister needs to about hospitals and operations, and not having Mommy and Daddy home when Maya is in the hospital (or when we are in the hospital). But like Maya she is a strong little girl who is still all about pink, ballet, singing songs, and dancing about the house screaming with laughter. I think God knew we needed that in our house during this season. And of course He has used Teya to be comic relief. During the most difficult of times she continues to babble and make various attempts at making mom and dad laught at her...her smile, her waddle, her attempts at running, climbing and trying her best to be a 3 year old like Addy is truly our definition of "cuteness."

We will most likely schedule open heart surgery in the next week or so. I am thinking anywhere between March and May. Please pray for health for Maya, as health is essential for surgery and success! And of course another illness like the one in August would be devastating! And of course our entire family could use your prayers.

November Update

Maya:
Well, it has been a more challenging transition to school this year than in prior years, beginning with Maya's long recovery from pnuemonia in August. Now she is healthy and strong and doing her best to fight minor colds and runny noses...she and her sister have received their first round of H1N1 shots and their flu vaccines. Maya is in a K-1 classroom most of the day with her 1 on 1, and she spends some time learning with the rest of the kids, and then spends a lot of time doing one on one activities. At 2PM she goes with her one on one, over to the preschool room for more socialization time, while they do "free play" time. She stays with that class of kids until the end of the day at 3:30.

Maya is finally making some good communication progress. She is not signing a ton, but when she does sign she is using it appropriately and more consistantly. She certainly is understanding more sign language and can follow some simple directions. She amazed Dean and I a few weeks ago on her trike...her endurance was great and she steered herself all over the place, even turning around at tight corners. Her balance also continues to improve. She is getting up the bus steps (which are HUGE) independently...using the rail for help. She also is very excited to be social with other people, and even kids now...this is a huge change for her. She JUST does not know exactly how to interact with kids yet, but she is trying:-)

We met with our WA state CHARGE families recently and had a blast hanging out with all the families. That connection for us continues to be a safe place to share about our journey as parents and the unique world of Maya, for that I am so thankful. It also is a wonderful place to share our struggles and celebrate the acheivements of our wonderful children...who are ALL so special. We have met now for about 3 years and we are so comfortable with each other...Dean commented on how quickly we dive into "real conversations", we really don't spend much time in small talk...but you know what, it is not all serious, as we try not to take our lives too seriously or we would go nuts I think...we certainly spent a good amount of time laughing together!

Addy:

Well, Addy is definitely becoming her own special person. The words I use to describe her are vibrant, full of emotion, BIG hugger, athletic, and FUN! While at times she can be shy in public, she has quite a crazy side. Her outfits that she insists on picking out herself are very busy, full of color, and on the feminine side. She is doing 2 mornings a week of preschool, and ever since she began she has been reciting the alphabet perhaps 100 times a day, trying her best to write letters and numbers, counting everything that looks like something that needs to be counted, and signing her letters with me...it is cute, often she will sign the letter "a" and have her "a" kiss my sign of "a"...it is sweet. Her preschool incorporates the signs for the letters, which REALLY has helped her acceptance of signing at home:-)
Addy's biggest achievement of the month has been learning to swim all by herself. She now can jump off the wall and swim on her own to the surface and several strokes to Mommy or Daddy...so exciting for her!

Teya:
Teya is Maya's BEST learning partner here at home, as they both are learning to point, and both LOVE the same types of books,toys, and simple sign language. It is great to have a little buddy help me with Maya's story time and puzzles:-) Teya is all about imitation right now, and loves to try to say new words each day. She also is picking up sign language well too. She LOVES baby dolls and carrying around a backpack like her sisters wear when they go to school. She continues to be a real sweet spirit, but has begun to show a tough side of herself, that lets Addy in particular know that she will not be messed with! And, she can screech with the best of them too. Most of all, Dean and I spend lots of time just soaking in her cute little personality and hilarious behaviors...17 month olds are just so darn CUTE!

Halloween "Treaters"

 
 
 
 

Maya at Mary Bridge

 
 

PICTURES OF MAYA SUCTIONING HERSELF AT MARY BRIDGE HOSPITAL

At Children's Hospital, Maya was diagnosed with a terrible case of pnuemonia...her left lung was all cloudy a "white out"...no clear air in it. She seemed to get more comfortable over a few days and spent from Sunday-Thursday at the hospital and was then discharged. Thursday and Friday morning she seemed happy to be home and chilled out much of the time on her bed in her room, while her sisters played nearby. Friday at 5 PM she started having a cough attack that lasted non stop until 9:45, when the nurse on call made me promise her I would call 911...I did. Maya was admitted to Mary Bridge hospital in Tacoma where her x-ray showed no improvement from her initial X-ray at Childrens...her pnuemonia was still just as bad. Another X-ray and CT scan later showed that her left lung had collapsed as a result of mucus plugging up her bronchi and not allowing air into her lung. A procedure on Sunday scoped her airway (she was intubated) and sucked up an exuberant amount of mucus from her bronchi. 4 IVs, many episodes of suctioning, 4-5 differnt types of antibiotics, routine nebulizer treatments, and routine CPT and 1/2 hours time periods wearing a vibrating vest, Maya continues to be at Mary Bridge where her status has gone unchanged, not worse, but not better either. In the past 24 hours Maya has begun to cough up large amounts of goobers (a good sign actually) and we all hope and pray that the X-ray tomorrow morning will show improvement...Drs. today noted air was heard moving in and out of her left lung...a good sign of improvement.

Vacation with neighborhood friends

 
 
 
 

Shortly after recovery, or perhaps during the tail end of my recovery we went to Leavenworth for our annual vacation with our neighborhood friends. Dean was able to golf with the other dads, I hiked with the other moms,the adults played games late into the night after the kidd were in bed, and the kids played endlessly with their friends. However, many challenges effected our trip. One family decided it was best to stay home and get healthy for a wedding they needed to attend in Boston, as their son was ill. Addy got sick on the trip and had a fever for the first few days, and then Maya, Teya and another friend's daughter all caught a bug. Unfortunately, Maya was VERY sick, needed oxygen (we had to travel to Wenatchee to get more), and then ended up admitting her into Children's hospital in Seattle on our way home. While it was great to be with friends, it was a bummer that we all could not participate in this year's vacation like we did last year.