The Kelly Family

Maya is signing!

2011-08-17T15:17:00.000-07:00

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

2011-01-14T14:02:00.000-08:00

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

2010-09-30T14:50:00.000-07:00

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

2010-05-04T22:10:00.000-07:00

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

2010-04-12T09:48:00.001-07:00

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

2010-04-12T09:33:00.000-07:00

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

2010-03-31T18:27:00.000-07:00

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

2010-03-23T18:33:00.000-07:00

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

2010-03-22T22:04:00.000-07:00

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

2010-03-03T23:05:00.000-08:00

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

2010-02-20T18:59:00.000-08:00

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

2010-02-19T14:48:00.000-08:00

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

2010-02-11T15:03:00.000-08:00

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

2010-02-09T21:21:00.000-08:00

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

2010-02-08T12:30:00.000-08:00

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

2010-01-11T13:51:00.000-08:00

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

2009-11-05T14:34:00.000-08:00

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"

2009-11-05T14:26:00.000-08:00

Maya at Mary Bridge

2009-08-25T21:38:00.000-07:00

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

2009-08-25T21:23:00.000-07:00

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.

Visit with Giampa, Babu and cousins

2009-08-25T21:11:00.000-07:00

The swingset Dad and Giampa built

2009-08-25T21:04:00.000-07:00

Merry go Round with my in-laws

2009-08-25T21:03:00.000-07:00

Brain Surgery

2009-08-25T20:59:00.000-07:00

BRAIN SURGERY:
In July I had a terrible, and I mean terrible headache that lasted 14 days, and which caused me to even throw up several times. After visiting the Doc. who ordered an MRI, I was diagnosised with a Meningioma (a benign braing tumor attached to the outside of the frontal right lobe of my brain.) I was quickly scheduled for surgery, had a horrible ICU stay (where there was no central air during a very hot week.) My mother spent one evening draping wet wash clothes on me and then graciously bought be a portable fan for my ICU room. After my 5 day stay in the hospital with grandparents and Matt and Holly caringfor my girls, I returned home. I spent a week sleeping and recovering in my parent's RV and in my bedroom. Much of that week is a fog now. I had a terrible reaction to my anti-seizure medication, which when discontinued, my recovery was quickened dramatically. After two weeks I was about myself, and my in-laws visited for 3 weeks, and helped me entertain my girls while Dean headed back to work.

Brain surgery and recovery

2009-07-20T09:41:00.000-07:00

Well friends,
here are some pics I took of myself, certainly not too flattering, but at least gives you a good "picture" of what I look like today and tomorrow...I take off my crown/ turban tomorrow...my neighbor thought it would be fun to have the neighbor kids come over and do a gentle signing of my head dressing, like a cast. Since the kids are so curious about it, that might make me a little less scary to them. But, really little kiddos are doing great, and Addy was especially relieved to give me a Hello Kitty band-aid for my wrist, that is pretty bruised up from 2 different art lines (you can see my battle wound that I am so proud of) I had in it...it looks way worse than where my IVs were, and since it was not covered up, she was glad to have a job to care for Mommy...and all the kids are doing great with me...very curious about my head, but sweet and gentle too. They are having so much fun with the cousins and playing out on our patio...our new grass was just put in, so that is off limits for a few weeks, but our neighbors are so generous with their backyards.

I am so happy to be home, with carperted floors, access to my bathroom at all hours, dvds to watch and books to read, cookies to eat, and actually feeling good enough to read (and I really am not much of a reader, so I did not think that would be a great recovery activity, walk around the house some, hug my kids, sit on the couch for short periods of time and visit my brother and wife... they are TRUE therapy for my soul. We continue to be brought food in abundance, play dates, friends to walk Maya and play with her. Maya's summer school teacher is even spending some afternoons this week with her, what a blessing! Holly has now "mastered" Maya duty and gave Dean a whole night's rest...I am certain he is so grateful!

I slept well last night and am so happy to not have 2 hour periods of time staring at the ICU walls thinking about everything you never get to think about when you are busy with 3 kids all day and super exhausted.

Tomorrow, I get to see what my head "really" looks like and wash my hair, which seems a bit painful to think about...but then I can move on and figure out how to accesorize my new hair do...hat, bandanas, scarves...any suggestions, I am game...not sure I want to shave my head, but you never know!If I do, I will send out a picture of my new look!

Marty being admitted on Wednesday

2009-07-14T13:58:00.000-07:00

So after my appoitnment on Monday I received good and not so great news...nothing horrible. The main dilema my fmaily is facing is that I will be admitted tomorrow morning for a pre-surgical procedure that i am not at all excited about. Apparently on the MRI they found some very obvious blood vessles on my Meningioma, that could cause bleeding complications during surgery if not taken care of. So tomorrow morning I will have a procedure called an Embolization (not sure on the spelling), but it was explained to me that this will be a catheterized procedure that will use some pretty amazing technology to keep these blood vessels from filling my tumor/mass with lots of blood). So this means my hopsital stay is now Wed-Sunday rather than Fri-Sunday, which is okay...family will be here to help with the girls, and lots of friends, and church folks are all pitching in. The girls are in good spirits, Dean is getting some breaks for jogs and errands, and at times I am able to settle down enough to rest...my biggest struggle is to not let the "laundry list" of things to be done, overwhelm my brain and heart. I will wake up early in the morning with a lot on my mind, unable to go back to sleep. With my Mom and Dean here, the kids, and house are in very capable hands...this weekend my sister-in-law will be here to help, so Dean and my Mom can swap hospital time with me. My mom is going to stay here until Dean's parents arrives later this month (they were already planning a visit, so they are coming a few days early...such a huge blessing to us). My friend Emily Bosh is coordinating my schedule and care-needs, so if you want to contact someone, she is who to go through...752-0320. She is doing a fantastic job and sends me an updated schedule daily so I do not need to answer every phone call and e-mail which can get overwhelming. However, if you really want to contact me, e-mail is great, I am on Facebook some, and will try to get Emily or Dean to do e-mail updates. Emily's e-mail address is emilybosh@yahoo.com, if you want to e-mail her to make sure you are on all large e-mail updates. She is so awesome, and wants folks to feel included in all this, as I certainly do not want anyone left "in the dark", but must admitt, even typing, talking on the phone, and dailing phone numbers is hard to do right now. I can get a bit jittery and shaky at times, and even occasional head aches...my medication is great for my pain relief, but is making me rather loopy. Addy wanted me to spin with her fast to music today, and of course I am not quite up to that right now!

We love all the suport and prayers. We are definitley feeling the presence and peace of Christ this week and you all are certianly amazing hands and feet of Christ to us this week, and we so love you all and appreciate each and every one of you!

Prayer Requests:
Marty- patience with hospitalization time, calming my mind, and not going crazy with hourly neorlogical checks on the hour from tomorrow afternoon until Sunday...I assume I will be rather annoyed and exhausted...so fair warning if you choose to visit!

Trust that my kids are in the best possible hands, particularly Maya who I have the hardest time letting go of ( with her care!)

Routine surgery, that the Meningioms is truly on the outer surface of the right frontal lobe of the brain, and is not in the brain at all or looking at all concerning to the Doctor...not likely, but always possible.

Dean-
To get breaks, like jogs, throwing a frisbee, checking in at work, getting a walk with a friend or a kiddo. Keeping up with his summer school program that he facilitates this time of year.

Maya-
Will be well cared for, does not have anything scary happen to her or get sick, which won't scare her, but could be nerve-racking to those caring for her.

Addy-
My very sensitive 2 and 1/2 year old, who is trying so hard with all her strength to make "Mommy feel better"...she really cannot grasp the situation, which may be for the best, but 5 days without mom will be very new to her!

Teya-
Was cut off suddenly from breast feeding, as she cannot have ANY of my medications as they are very strong! So good rest and sleep for her, and me as we transition to "cow milk" and big toddler food!

My mom and Dad-
My mom's back has been bothering her, and we are so hopeful it is not another kidney stone...she has been having trouble with mulitiple kidney stones, and this would just be terrible timing...we are assuming it is more just strain from lifting the gilrs and playing so hard with them, and doing a lot of EXTRAS! She truly is super-grandma, and it is just as hard for her to let go of things as it is for me! My Dad is doing a lot of travel between Tacoma and Portland this week...so safe travels for him.

Our neighbors & church-
Are truly awesome and are helping with meals, caring for the girls, watering the lawn, doing our laundry, our groceries, cleaning the house, and everything you can imagine...our community is such a blessing!

Again, thank you for support, prayers, and love, we feel so well cared for from near and far away and would be a mess without you all!

If you decide to visit me please note:
I will be in the ICU a lot of my hospital stay so they can keep a close eye on me, which is great, however, this means that if you visit, you will be asked to probably come in 1 at a time, without kids, and withou making noise, and withou being at all ill. On Sunday I should be on the floor and able to see people better, but may appreciate the kids staying home:-) I may need an Addy or Maya cuddle, but loud noises have not been fun this week, so I imagine they won't be next week either.

Once I am home:
I will limit my visits to about 20 minutes, not becaus eI do not love you, but becaus eI do not do well keepin ggood boundaries for myself. Also phone calls are best between 9AM and 9PM, and e-mailing, texting (253)720-4176 or 253-677-2388 are best and less overwhelming. I am not the only one in the house that sleeps in right now, and if my kids sleep in, that is a huge blessing to all the adults...and I will have 2 more kids here for the weekend and my brother and his wife, who need their sleep too. Thanks for understanding!

Marty Kelly and Family

I will try to have someone, maybe not, me send out updates either through facebook, my blog here, or Emily will send out an e-mail.

Marty is having surgery on Friday

2009-07-14T13:57:00.001-07:00

I sent out this e-mail last Friday so it is a bit over-due...so sorry to those who are feeling out of the loop!

Well, as some of you may know I battled some pretty terrible head aches this past week, and had to drop out of some of my scheduled activities, like VBS on Thursday and Friday (vacation Bible School leading at church), and then Maya's HANDLE evaluation Friday afternoon. This morning (Friday) I had an MRI, since I never get headaches, and the one I was dealing with had lasted for 10 days without relief. I did not enjoy my MRI, and was wheel chaired to my car since my head was spinning, and I had been throwing up some from the headache prior to the MRI. Then, I called my Dr. for follow up and was told to come in and they would fit me in. Then, we received a call from another Dr. office stating that he wanted to see me...they did not say why or what kind of doctor he was, all I overheard was that he was fitting me in after his afternoon surgery...so I gathered he was a surgeon, so I got a bit concerned. They told me to come in at 2:30, so Emily Bosh came and drove me to the appt, while my mother stayed with my sleeping girls. Unfortunately, the surgeon never made it back for my appt. as he was on call...HOWEVER, I really got concerned when I read that he was not only a surgeon, but a Neurosurgeon (not a good sign)...As I told Emily I never thought I would ever enter a neurosurgeon's office, she stated that I could cross this off my "to do before I die list" and I made sure she knew, that this would not have been on my list...maybe finishing a marathon, climbing Mt. Rainier (and those would most likely NOT be on my list either:-) )

So, since the doctor never made it back they sent me to my primary care physician, who explained to me the results to my MRI...since no one had yet. My friends are so great...Emily had to get back to her family, as her daughter would be waking up soon to nurse, and her husband was home watching the kids AND he had pnuemonia. SO, Julie came to be with me when Emily left. So, I have what is called a meningioma (Dean found a few links below so you can read or see what one is). It is attached to the front of my brain and is growing, causing a great deal of swelling and pressure on my brain and giving me massive head aches. The good news is that they are rarely cancerous, the bad news is that because it is growing and causing swelling near my brain, it needs to be removed, which means surgery next Friday!!! EEEKS! I am at a higher risk for seizure because of it, so I cannot drive and I am on some hard core medicine for the swelling to go down, to decrease pain, and to keep me from having seizures.

My medicine has kicked in and I am feeeling MUCH better, but a bit loopy from my pain killers:-)

http://en.wikipedia.org/wiki/Meningioma
http://www.mayoclinic.com/health/meningioma/ds00901

Tomorrow we have the HANDLE presentation for Maya at the church, and then we will see how to go about next week...Dean is looking at his schedule to see when he can help at home, since I will be on medication, unable to drive, and probably not the greatest play mate for the girls. So if ANYONE wants to play with any of our three girls next week, they would LOVE it! Maya has school Mon-thursday mornings, but Addy and Teya LOVE play dates!!! Addy is abit sensitive right now, so she will most likely bring her binky and blanket along to soothe her, and I will not be pushing the big girl underwear either:-)

Thanks for all the suppport this week, hopefully other than surgery next week will be a bit less dramatic!

Marty

Happy Birthday Maya

2009-07-04T08:05:00.000-07:00

Well Miss Maya is officially five years old! I am overwhelmed with joy at how healthy she is at age five. When Maya turned 1, she had just learned how to sit up. At age two she took her first steps, at age 3 she started pre-school, at age 4 she had her first friend birthday party. On Friday, we had a big day and she did great! We did some of her very favorite things. We took her to the Pt. Defiance Zoo where she got to look at the fish in the aquarium...which she loves, and then let her ride the merry go round...another favorite. There is very little that really sparks interest in Maya, so I made sure she had some favorite experiences for her birthday. After a short nap, we had her b-day party with close friends and family at the sprinkler park...a VERY happy place for Maya. It is amazing that she loves it so much...there were a TON of people (which she normally would withdrawl from, and there is a lot of startling water that sprays at you without much notice). Maya just giggles and tries to pull us along with her through the sprinklers. I noticed as a few kids tried to interact with her, which I thought was so sweet...kids who do not know Maya...one tried to give her a toy, and she seemed to never really even see the gesture made by this child. Another girl came up to her, watched her for a second as if thinking "what is this little girl up to?" and then very sweetly said to Maya "Hi, little girl", and of course Maya cannot hear so I explained that to the little girl who just shrugged and walked away.

Maya got to actually experience some of her birthday this year (as opposed to us trying to make it look and feel like a party whether or not she participated much in it)...tastes of ketchup from my hotdog, she LOVED tasting the popcicles Grandma brought for dessert...since cake is not really a good food for her to taste right now. But she sat on my lap and explored her "lemonade" flavored popcicle and proceeded to drip it all over me...I felt really sticky by the end of her popcicle exploration. She even got a few presents that were in bags which made it easy for her to reach in and pull out! Then she got up and started walking around and exploring the grassy field where we picniced. I do hope some day for Maya to actually have interactions with other people at her parties. And, I am certain her favorite part of the day is when her friends gathered around her and signed the "happy Birthday" song...she just smiled and smiled...I know she felt important at that moment.

Happy Birthday to Maya...you are one amazing little 5 year old, and a big year is ahead of you! We are so proud of you and grateful for your health, and your ongoing desire to explore the world around you and teach us all patience, gentleness, and determination.

Summer news

2009-06-22T14:20:00.001-07:00

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

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

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

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

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

Maya

2009-06-22T14:17:00.000-07:00

Addy

2009-06-22T14:15:00.000-07:00

Teya

2009-06-22T13:59:00.000-07:00

Seattle friends

2009-06-22T13:30:00.000-07:00

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

Dad in DC

2009-03-26T15:23:00.000-07:00

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

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

New rooms

2009-03-04T16:37:00.000-08:00

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!

new room pics

2009-03-04T16:36:00.000-08:00

New room pics

2009-03-04T16:35:00.000-08:00

Amazing girls

2009-02-06T11:59:00.000-08:00

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!

Teya is crawling!

2009-01-16T20:11:00.000-08:00

I think I marvel at the mile stones of babyhood. What took Maya many more months and years in some cases, hundreds of therapy appointments, and practice, practice, practice, just seems to happen for others. With 2 needy big sisters, it is not like we have been "coaching" Teya the various techniques of crawling. And at 7 months, rolling and sitting with support would be plenty! But unlike Addy who enjoyed the wonders of the "bear crawl", Teya likes to crawl as Maya did on all fours with opposite arm and leg moving together. It is fascinating...I mean have you tired to hang out on the carpet on all fours very long...unless you are a Yoga expert, and even still it is hard work. We now have decided once again "Baby proofing" is in order...you would think after doing it two times it would stick, but not our house...as the kids get bigger their toys get smaller in some cases and some of Addy's toys are not safe for Teya. And in one day (today) Teya crawled across the room twice, retreived my keys from inside my purse, found Maya's school work from preschool to chew on, and came across some Nerds candy that Addy had dropped!I think we officially have 3 mobile children...watch out world!

Finger Painting fun!

2008-12-25T15:24:00.000-08:00

Just wait until we teach Teya how to do this!!! We LOVE to finger paint!

Christmas Day

2008-12-25T15:22:00.000-08:00

We celebrated Christmas this morning with our three girls and their Uncle Kurt and his girls Katya and Sonya! The big cousins spent the night and actually waited until 7:30 to wake up! The girls all opened stockings one at a time and the Big girls really were wonderful and enthusiastic about what the little girls got in the stockings from Santa...Mommy and Daddy got special gifts from Santa too:-) We ate breakfast (caramel apple french toast), then we read the Christmas Story from the book of Luke, while the big girls acted it out using our Little People Natvity set...that was pretty fun! Then we all opened our presents! Some of the fun gifts included my childhood doll house (Yes! my Mom made it for me when I was little and you can see it in the picture of Addy feeding Abby Cadabby...pretty impressive), a kitchen set for the house, a new BIG RED bean bag for Maya to lounge in, Addy received an Abby Cadabby doll and Maya a Grover doll (their favorite Sesame characters), Dora Jammies...baby Teya Jammies...Elmo and Jungle Book videos from Babu, new pairs of shoes for Addy and Maya, and Dean and I are super excited about our new video camera and work out gear from our folks! Tomorrow we will have Christmas with Auntie Holly and Uncle Matt and then Next week in Portland with my Parents if the snow decides to melt! We have been VERY blessed this year and are most thankful for health and our three beautiful girls. Happy Birthday Baby Jesus!

Christmas Eve

2008-12-25T15:09:00.000-08:00

What a wonderful time we had at our Christmas Eve Service. We arrived bright and early with some of our neighbors and sat right up front to watch the Christmas story acted out. It was only about 40 minutes so our three girls were able to watch it. Maya was wonderful as ussual, and enjoyed the lights and decorations of the sanctuary. For a 2 year old Addy did well too...she spent some time on my lap, on Dean's lap, on the floor rolling around, AND refused to take off her jacket (she can be very particular about the strangest things), and she did a lovely commentary of the scene that was acted out before us..."Those aren't angles...they don't have wings!" "Where's Baby Jesus?" "Where's Bethelem?" "I wanna go HOME!" And Teya, well she very happily played on the pew next to Dean. I could not understand why no one sat next to us!?!?! Anyways, the girls looked beautiful in their Christmas dresses, and it was so fun to enjoy the service all together (especially without the noise of a suction machine!...which is what we had to use with Maya's trach)!

Winter Storm 2008 maya Pics

2008-12-25T14:37:00.000-08:00

Winter Storm 2008

2008-12-25T14:33:00.000-08:00

We have had a lot of fun enjoying the 6" of snow here in Tacoma. While my parents were bombarded with 24" in Portland and a 4 day power outage (Thank you Mattis Family for taking them in, and celebrating Christmas with them:-)!!!), our family has been out enjoying the snow! Addy has a new found love of sledding and tromping through the "crunchy snow"! Maya is okay with the snow if and only if she is pulled in a sled around the neighborhood on flat surfaces that do not cause her to have to lean too much...she likes slight down hills, but NO BUMPS PLEASE! Her difficulty with balance has been very obvious in the snow...walking in it causes tears and grouchy noises to come from her, and she has fallen more than once getting to the car from the house....life is much better now that Daddy shoveled the walk ways..."Thanks Daddy!"

Teya is Eating solids!

2008-12-25T14:25:00.000-08:00

We are excited to announce that Miss Teya is enjoying her new found love of solid food. She has perfected the art of eating rice cereal, bananas, and sweet potatoes. I am thrilled to be able to use my Vita-Mix (the machine I use to blenderize Maya's food, so that real food can go through her tummy tube...Maya does not tolerate formula nearly as well), for Teya as well. It really is easy for me to make a batch of baby food and freeze it and then pull out a cube or two for Teya to eat! Every now and again I can even sneak a taste of baby food into Maya's mouth. It is such a miracle, that MOST children just figure out eating orally like it is no big deal, when it really is a VERY complex skill...for Maya we still hope an pray she will aquire this skill when it is safe for her to do so.In the mean time, Maya has two little oral eaters to watch each day and hopefully motivate her to join them...Go Teya and Addy!

Oh we wish we had our camera!

2008-10-20T14:39:00.000-07:00

Sunday was a great day for Maya! After a wonderful day away with my girlfriends on Saturday, we decided to spend a family day on Sunday. In the morning we took the girls to a local school yard with a nice big black top (flat concrete area) to let the girls ride their tricycles. Maya has a pink and purple trike with foot straps and a waist strap to keep her feet and bottom on board. Addy rides a super wonderful blue trike our friends the Mattis' gave us (thanks Jim and Mary, we really do need two:-) ) . So not only did Addy show us her new trike skills..she actually can ride a bit on her own, But MAYA BLEW US AWAY! The black top was slanted in parts so it was not completely flat, and SHE RODE HER BIKE EVERYWHERE! When she would get to an uphill her legs would pump a bit harder and on up she went all by herself...then she would hit a downhill and Daddy would have to jog after her to make sure she was safe and did not tip over. Addy quickly gave up to go play on the BIG TOY equipment, but not Maya. She rode, and rode, and rode for at least a half hour. Dean and I were simply amazed...she had so much fun and so much more energy than we dreamed she could have! Not only did she ride well, but the big toy had a shaking bridge that she managed all by herself AND was able to get up to the slides and get down them on her own. The big toy it self was great because everything was structured with bars and walls to prevent any falling...and for a kid with really poor balance this is key...it was also nice too for our dare devil 2 year old:-) Also, both girls are now safe on the big girl swings, so we don't have to find playgrounds with baby swings...we willsoon enough when Teya's ready...but for now... We are now in love with this school playground and will probably plan on going every day next summer when school is out:-)

Hunter's Pumpkin Patch

2008-10-20T14:33:00.000-07:00

This last Friday we went to the Pumpkin Patch with the girls. They all had so much fun and it really is amazing to watch them enjoy the experience so much. Maya was really adventursome and loved walking around checking out the animals and pumpkins all on her own. Occasionally, she would wander away from us and my eyes would furiously look around for her only to find her under a huge tree staring up at the branches...she LOVES to be under the branches of large fir trees. She and Addy followed Daddy through a small hay maze (which he admitted was quite difficult) and ended the maze with a slide down a very large fast slide. We all took the tractor to the pumpkin patch and played in the patch, picked out our favorites, and then it was time to go home. It was a great day. I continue to be so happy that Maya is at a place in life where we can just pick up and go on an outing whenever we feel like it (no nurses to cooridinate with and best of all no suction machine to lug around everywhere). Sorry for all the different picture layouts...I am trying out some new ways to post pictures...you can let me know what you like best:-) Check out the next two postings!

Hunter's Pumpkin Patch pictures

2008-10-20T14:24:00.000-07:00

More Pumkin Patch pictures

2008-10-20T14:16:00.000-07:00

Maya pictures summer fall

2008-10-07T11:37:00.000-07:00

Pictures of Addy summer and fall

2008-10-07T11:29:00.000-07:00

Fall Update

2008-10-02T13:05:00.000-07:00

So obviously we are a busy family these days and it is very difficult for me to find time to sit and update our blog, but I am going to give it a try...Maya is at school and both the little girls (for this moment) are asleep. Summer was a crazy season with all three girls home all day with me, and after a lot of help from friends and family I had a few weeks to experience life as a mom to three kids by myself for a few weeks. Let's just say it is a bit of a juggling act between nursing a baby and rocking the baby to sleep at times, and feeding Maya every 2 hours by g-tube and syringe, trying to get Maya on the potty every few hours, and then attending to the "not neglected at all, but feeling very neglected" 2 year old...so obviously there were some tantrums, some jealousy of big and little sister, and then just the regular stuff...snacks, meals, playtime, and naps. WHEW...I am tired just thinking about it all.

Now Miss Maya is off to school every day. The bus picks her up at our house at 8:15 and drops her at home again at 4:20PM. She is very tired at the end of the day, but we are excited for all the opportunities she gets to experience at school. She is in a Deaf and Hard of Hearing total Communication classroom, where ASL is the primary language for the majority of the children. Maya has the most "special needs" of all the children and has a one on one para educator that helps her get around and signs a lot to her. Most of the kids are typical 3 and 4 year olds who happen to have hearing loss, so it is a busy environment. The kids love her and take good care of her. Her daily report has been mentioning the sweet boy in her class who likes to take her by the hand in the "recess area" and lead her everywhere...even up and down the slide. He also stood up for her when another child pulled her hair...he signed "no! Stop!" and then proceeded to pat her hair down and smooth it out...how cute is that!

Maya just had a sleep study this week, and we should hear about how well she sleeps without her trach in the next weeks. We are hoping to schedule a procedure to stitch the hole left by her trach tube closed very soon. I think we are waiting on the sleep study results before they procede with closing the hole.

Maya is sure amazing us with new skills. Though communication is slow we are seeing very positive signs of improvement...she does a VERY obvious more when we stop reading her bed time stories or stop on walks with her around the block. She still loves tasting food at the dinner table although she is not cleared to really eat yet. She is climbing up onto furniture and is trying the dare devil tricks of her 2 year old sister...somersaults, running down the hall, playing chase, climbing on our dog, and trying to climb in my lap whenever another sibling is already there. We are all so proud of Maya!

Addy continues to be a typical 2 year old...full of opinions, tantrums at times (especially if she is not feeling great), but also is so full of life she leaves Dean and I and her relatives smiling and laughing a ton. She loves to move, dance, run, jump, somersault, swing...she loves her baby doll, her train and car table, Sesame Street and Signing Time, and ADORES her two sisters and at times is very certain of what THEY want..."Maya wants her shoes on...Don't tickle Addy...Tickle Maya" "Teya's all done eating. Teya wants to go Night,night. Back in the bed, Baby Teya." And she has demands for her parents too.. "Daddy hide. Daddy cuddle on the couch. Mommy hug me!" Oh we love our Addy!

Teya is still a WONDERFUL baby! She cries very little and is happy to just watch her sisters and smile when smiled at. She is cooing and holding her head up well, and it won't be long before she can roll over. She scootches out of her bouncy seat or car seat if she is not strapped in. She continues to have beautiful blue eyes, unlike her older sister. We could not have asked for a sweeter baby!

Dean and I are doing well, and believe the transition to 3 girls could have been MUCH HARDER! We sleep fairly well at night, interupted only by night feedings of Teya and occasional Alarms on Maya's Oximeter (but nothing ever scary). We have found ways to have a date or two (with baby Teya)...we even took her to a movie a month ago. Dean is busy at work, and recently joined the board of Hand and Voices an organization that supports families with hard of hearing and deaf children (no matter what communication method they choose to use in their family). I have continued to be involved in the leadership of Mothers of Preschoolers group at church and have been busy just being Mommy to my girls.

I still smile whenever there is a peaceful moment at our house...all three girls are either asleep or occasionally they are all awake, happy, and self-entertained. This is a very wonderful season of life despite the amount of energy it takes, and I am trying to soak in these moments before these sweet girls grow up too fast!

Teya is NOW crying of hunger...better run!

The Kelly girls

2008-07-18T11:04:00.000-07:00

Well. it has officially been 6 weeks since Baby Teya's birth and we are adjusting to the world of three girls ages 4 and under and all in diapers. Here are updates on our sweet little girls: (Click on the names below the thumbnail pictures to view recent pictures of the girls)

Maya: This is Maya's last week of night nursing! AHHHHH! I am enjoying the freedom that has come with not having day nurses, however, I REALLY loved having someone care for her from 11PM until 7AM. On the bright side we will get to go to bed earlier and not have to stay up for the nurses to get here. Unfortunately, when Maya is sick she will need some care during the night to keep her oxygen on her, and her feedings going. Also, she has been doing some night waking where she wakes up as early as 1AM and stays awake the rest of the night. I am hoping that the absence of the nurse will bore her and she will go back to sleep on those nights...I guess we just have to wait and see. Maya also has a wonderful teacher that has been coming to the house and signing with her 3 mornings a week Mon, Wed, and Friday. She and Maya have a terrific bond and Maya is making some good communication progress with her. Maya also is going to speech once a week for the summer and we are hoping speech and her teacher will keep her progressing until school starts again in the fall. Maya has now had two challenging colds since her trach was removed and she did really well. The nasal canula kept falling off because of all her secretions, so we had to use "blow-by" oxygen. She was really cute, because she would fall asleep and just grab the blow by oxygen and hold it to her face...so cute! Her stoma is still open, and the doctors will look into closing it (if it does not close on its own) by November. In the meantime, Maya wears some pretty cute handkercheifs around her neck so that she does not irritate her stoma by poking it...which she likes to do. Maya LOVES the summer time and being around her sisters more. She has signed "baby" a few times for Baby Teya, and has been trying to copy Addy's attempts at somersaults...Let's just say Maya has mastered the Downward Dog yoga position (head on the ground and bottom in the air)! All in all we are pleased with Maya this summer and enjoy having more time with her during the day, however I am trying to not freak out too much about our upcoming nights with no nursing and a newborn!

Maya 7/18/08

Addy: Addy continues to amaze us with her physical and verbal abilities. She is not two yet, but has decided that there is nothing better on Earth than dancing and gymnastics. As she watched the Olympic Trials for gymnastics with me she shouted "sommiesault" over and over until a commercial and then she asked for "more sommiesault". She also watched some of So You Think You Can Dance the other day when I was watching a recording of the previous night's show. She started spinning and would not stop until the dance finished and then she quickly said "more." Tonight as I tried to keep her occupied while I nursed Teya, I turned on a children's music CD and she just danced around the living room the entire feeding, which I think lasted at least a half an hour. She is also starting to use more sentence like speaking, and asking tons of questions ussually beginning with the word "where"..."where did (fill in the blank) go? (Daddy,Shasta,Maya,Teya, Mommy) She is a ton of fun and a fireball of energy!

Addy 7/18/08

Teya: Teya hit 6 weeks old on Thursday and continues to be a terrific baby. She does cry a little more, especially in the evenings, but she definitely is a pretty easy going baby. Teya ussually will sleep a chunk at night from 10 or 11-4 , then feed and go back to sleep until 6:30 or so. We are managing to find some sleep so that really is what gets us through our busy days. Our sweet baby loves to go for rides in the baby carrier, the car, and loves to cuddle. Maya loves to play with her feet and Addy really just wants to attack her with hugs and kisses. She is growing every day and filling out the clothes that once were very baggy on her. Her hair (eventhough it seems to be falling out some) is light brown and her eyes are still blue...they could still change. We are anxiously waiting for our first smiles...they should be just around the corner!

Baby Teya

Mom and Dad:
Are tired and wish we could actually find some time to talk just the two of us...but that should come in time. For now we are grateful for every uninterupted hour of sleep and breaks to go work out or visit a friend. Mom is pretty much all recovered from her C-section and back to normal activities. In a few weeks Dad is flying to Wyoming with Addy to visit his mom and dad, and Mom, Maya, and Teya are going to Portland to spend time with her folks. Overall, the transition could not have gone smoother and we continue to be showered with meals and visitors and Marty is beginning to wonder what meals will look like when she has to find time to make them.

Baby Teya

2008-06-11T14:51:00.000-07:00

Baby Teya 06/05

Baby Teya arrived safe and healthy after a C-section on June 5th, 3 weeks early...just like her 2 Big sisters:-) She weighed in at 5lbs and 11 ounces and 18.25 inches in length...she is barely on the charts...just like her two big sisters. While her coloring is more like Maya's, with her hat on and her eyes open her face is very similar to newborn pictures of Addy.

Addy is entranced with "Baby Teya", and while Maya has not really paid much attention to her yet, she will give Teya smiles. Now, if only Mom would recover and start playing with the girls, life would be much happier. Both Maya and Addy are yearning for Mommy cuddles and play time. Mommy, however is still sore and healing...but looks forward to playing with the two big girls again soon! Daddy on the other hand is making up for it by playing hard when he gets home from 1/2 days at work...he will take full time off when his mom arrives in another week. My Mom is here taking care of the Big Girls and helping out a ton around the house...my Dad will be up some next week to help out too...it is so great to have so much help!

Maya Update

2008-05-19T13:12:00.000-07:00

Wow! Maya is just doing amazingly well! The transition to "no-trach" has actually gone about as well as it possibly could. It has been ONE WEEK, and we have not had any major road blocks. She is actually doing better at night than she did with her trach...she is not needing ANY oxygen, AND since the night nurses do not need to mess with her so much (she had a lot of tubes and wires to keep her from tangling up in), she is sleeping through the night well. So, what are some new things about Maya??? She definitely snores at night, though I must say it is a pretty darn cute snore! She has a hole in her neck, that the doctors hope will heal up on its own in about 3 months, or she will require stitches. I thought maybe with the trach out she would get less of those "glaring stares" from people, but no, now she has a hole in her neck that really gets even more of a glaring stare! We have tried to use bandages, but they just fall off...so Grandma Fran sewed up some clothes to fit her trach site that are held on with paper tape that we use at school or church. But really it is best to keep it open so that it can heal. Oh well, despite the small hole in her neck, most people still say she is really cute...which is definitely TRUE! Maya also likes to make funny sounds with the hole...oh Maya, you silly girl! Otherwise, we still have nursing care this month, Maya is attendding school now full time and the staff is learning to care for her feeding and medical needs for next fall when they will not have a nurse with Maya. Best of all, Maya is loving the great weather and has a ton of energy!

Our lives are changing too! We no longer travel with nearly as much stuff as we used to. We do not have to lug around her enormous suction machine, extra trachs, and trach dressings, saline, humidified noses, passimier valves, caps, and suction catheters, AND we do not have to do trach tie changes every single morning. Dean smiled so big on Sunday as we loaded the mini van for church with one very small diaper bag for Maya. We are also planning on going RV/ camping this weekend and it is so wonderful to think of packing for Maya! We used to have to bring a ton of nighttime equipment when we went overnight places...before we bought our mini-van, we had to take our car and truck when we went to Portland. Now all Maya needs are a few Oxygen tanks (if she needs them), a few nasal canulas, her feeding pump and food, and her monitor...now that should be much easier. My packing list for Maya used to be 2 full columns long (12 pt font) on the computer. WOW...what a change!

Now we are preparing for life without nursing care and baby Teya (I think this is the spelling we will now go with) Nicole. We have already decided that her name means "peaceful sleeper", even though we have not found that definition in any book. There is very little to get ready, just cleaning the house and making sure that the baby clothes are ready to go...it is nice to have a lot already in the house. So you can begin to pray that our family will get some sleep this summer...I think it may feel like 2 babies at night for awhile once we lose our night nurses in July, until Teya sleeps better and we get used to Maya's machines at night time (she still feeds at night and has a monitor that will make noise at times when she rolls around or wakes up, and of course if she is having breathing or heart trouble.)

Thank you all so much for all your prayers and support for Maya. This really is a HUGE step for her! More independence from equipment and nurses ALWAYS being around her, and also just a higher quality of living. We are so grateful that Maya has done so well this week!

Maya's trach is still out after a night's sleep!

2008-05-13T10:39:00.000-07:00

GO MAYA GO! We are so proud of our little girl. It is like she has transformed into a new person over night. Her neck is clear (other than an occasional bandage to cover her hole in her neck), and her energy is through the roof! Unfortunately, she did not sleep very long last night (from 8PM-2:30AM), so neither did Dad! However, while she was asleep she did NOT need ANY oxygen, snored pretty good, but never seemed to show any signs of distress. My brother reassured me that his kids snore too! That made me feel a bit better. We really do NOT know what a typical night's sleep will look like yet, but we are fortunate enough to have nursing care for 16 hours a day for a month and then 8 hours (for the night shift) for another month before we lose our care all together. This will give us a real good idea of Maya's progress/ challenges with her trach out before we are on our own.

The biggest concern is that Maya will start to struggle for air as the hole in her neck heals. We can tell that at times she does push air through her neck because it make funny sounds, which I kind of think she likes...the little stinker:-) However, most of the time she is breathing through her nose and mouth VERY comfortably, and like I said before her energy has been amazing...MORE than normal. I am not sure if she is just excited to have her trach out, if her breathing is easier, or what...but she is a happy camper and that is what is MOST important!

We will let you know how our adjustment goes, and how Maya sleeps over the next few days and transitions back to school. Dean just said to me, "I keep wanting to put Maya's cap back on her trach because I can hear her moving air in and out of her airway." We are VERY excited and hope that Maya stays healthy and continues to do great with her trach out!

If you click on the picture below, you can view Maya's hospital experience in pictures.

My Montage 5/13/08

Maya's trach is OUT!

2008-05-12T14:25:00.000-07:00

Although today went very slow, we are VERY happy with Maya's progress. We arrived for our 9:15AM appointment with the ENT Clinic. Before we had her trach removed we wanted her to have another round of BoTox to help with her secretions. That took 2 and 1/2 hours to get prepared for (I think mostly because this is only one of the first few times they have done the BoTox in the clinic versus in the Operating room.) Dean and I helped hold Maya while the Doctor injected her 4 times (under the chin), and Maya was certainly NOT very happy. Immediately following the BoTox injections, the Doctor simply pulled out her trach tube...and it was no big deal at all! She continues to be doing well, maybe starting to get a bit tired, from everything, but we could not be happier. Her energy level has been terrific, and she even did alright with our attempts at giving her her inhaled medication through her nose and mouth instead of through her trach. While there have been some serious tears today, there has been many more wonderful happy kicking moments, where it is obvious that she is okay with all that has happened to her today! I think she is also really enjoying having Mommy and Daddy ALL TO HERSELF today. So TONIGHT will be the big test for Maya. We are hopeful that she will do just fine sleeping without her trach for the first time since she was 2 months old...GO MAYA GO!

Maya and her newest skill

2008-04-13T15:45:00.000-07:00

Maya and her awesome PT at school have been working VERY hard to teach Maya how to independently ride her tricycle. We heard rumors that she has been making good progress at school, but had not seen her show off her skills at home until this weekend. My friend Whitney was here for a visit this weekend (she happens to be a PT as well, so she is ALWAYS interested in Maya's newest motor skills). Anyways, Maya decided this was a good time to "show off" her newest skills. She is really riding pretty independently...she needs a little motivation by pushing her legs, and then she is off, until of course she crashes into something or tires out a bit. She even giggles at times when she gets the hang of it. Last night she climbed on to her trike all by herself waiting for someone to strap up her feet to the pedals so that she could bike some more. Way to Go Maya! We do NOT look forward to the day she takes off down the street and cannot hear us when when we want her to return...so for now the porch and fenced in trails and black tops may have to serve as her riding surface. Here is some video of her great accomplishment, she gets much better as the video continues.

Maya and her trike

CHARGE get together

2008-04-01T14:03:00.000-07:00

Sunday was a wonderful day. Our family drove to Seattle to spend some time with our CHARGE family here in WA state. We never have too little to chat about and there is always something new that our kiddos are doing. Most of all it is fun to see our kids progress every time we meet. We usually meet in the fall and spring to avoid crazy summer schedules and cold and flu season. Unfortunately a number of kiddos were under the weather and could not attend. However the two oldest CHARGE kiddos were there (they are both in Kindergarten, and headed for 1st grade next year). So it was a great opportunity to hear about their school experiences, and to see how they both are doing medically and how their communication is coming along.

We were so impressed with these two big kids! One of them has been off his feeding tube since he was two and has some hearing so his speach and ASL are pretty impresive. When I first met this boy he had just "graduated" from using a walker due to balance challenges. Now he and his BIG Brother are always running around, playing imaginitive games and just being boys!!!

The other girl is so neat for us to connect with because she is the big sister to two little siblings (like Maya will be). Her little sister is just 20 months younger and it is so fun to watch them interact and watch the younger one care so greatly for her big sister. The CHARGE girl has just made some HUGE progress this year in many areas. For a long time her heart kept her from being as active as she otherwise could be and since her heart surgery a few years ago she has learned to walk independently, started going to school, and this year has amazingly learned how to eat all of her food by mouth rather than needing to use her tube...how cool is that! The other amazing thing she is doing is communicating like crazy. She has a Cochlear Implant that allows her to hear, however verbal communication has been a challenge. She has been learning sign language this year, and it is amazing to watch her communicate...oh to see the day Maya can communicate like these two kids would just be amazing!

Both kids are also really healthy and do not have to be SO concerned with germs, though it is still a bit more challenging for them to get over a clod than the average kiddo. I am so blessed by these families and their beautiful children. I am reminded too at how special the siblings are as well. The care their siblings have for them is unbelievable...they also seem to be extremely compassionate children who are very protective of their CHARGEr sibling. Thanks families for being such an inspiration to our family. You are all so wonderful and I look forward to a gatheirng in the Fall. Hopefully more of our younger friends will be there too! I think by then, some of them will be walking!

The Sleep Study

2008-03-27T15:15:00.000-07:00

I have not really been able to share the results of our sleep study with you all because they are not conclusive yet. In other words, our doctors are trying to decide what to do with the results of the study in terms of removing the trach or not. One Doctor is ready to give it a try, and the other is very hesitant. So the two doctors will be getting together with Maya's Primary Doctor at Children's to come up with a plan everyone on Maya's team is comfortable with.

As far as the sleep study, Maya was only capped (meaning her trach was plugged) for about 40 minutes before her Oxygen saturations dropped. The technician removed the cap and she saturated great for the remainder of the study. We thought this meant that she had failed, but we never understood why they did not try to give her any Oxygen before removing the cap...we still have no clear answer on that!

Her Pulmonologist feels that until she can tolerate the cap all night, Maya needs her trach in. Her ENT thinks that there is a chance she will do fine without the trach even if she cannot tolerate a capped sleep study, and this Doctor would like to decanulate (take the trach out) and monitor at the hospital overnight ...with the idea that we could always stick the trach back in. Both Doctors are great and we respect them both. After hearing their differing opinions, I explained that the two Doctors really should get on the same page...which obviously they agreed to do.

From my understanding after two phone calls from the Pulmonologist herself (let's just say in the almost 4 years of working with doctors at Childrens, all of which I have been very pleased with...this is ONLY the 2nd time a doctor has EVER called me at home to discuss information herself--ussually their nurse or resident calls...so I am very impressed with this Doctor's communication style:-) )...it sounds like Maya's ENT, Pulmonologist, and Craniofacial Doctor will be meeting to discuss where we go from here...but it may take some time to coordinate that meeting (which I also have to say, that it is NEARLY impossible for 3 Doctors at Children's to find time to sit down and chat at an agreed upon time---you might think that this is odd, but is it VERY VERY HARD for them to EVER communicate face to face because their schedules are rediculously crazy and different).

In the meantime, we are to get Maya on a nasal canula (which she DID tolerate during her sleep study--eventhough they did not give her oxygen through it), AND also get Maya an EEG. Apparently, her EEG monitors during the sleep study picked up some small epileptic responses, which need to be further evaluated through Neurology. HEy, why not?? I have never taken Maya to a Neurologist before...might as well add them to her list (Craniofacial, ENT, Pulmonary, Cardiology, Dermotology, Opthomology, Physical Therapy, Occupational Therapy, Speech Therapy, Audiology, I am sure I am forgetting something:-) ).

So, the Kelly house is in waiting to discover what Maya's plan is, and in the meantime I just entered the 3rd trimester of my pregnancy so the reality of baby girl #3 is setting in. I am still feeling great, but I am sure in another month I will be feeling HUGE. Continue to pray for the health of this baby, so far things look great, but you never know till the baby comes into the world and has to breath and eat and potty all on its own. Also, we would love for this baby to make until June. We have no reason to think it would come earlier, but my other girls were both 3 weeks early. Our C-section date is set for June 17th, Maya's last day of school :-)

We will do our best to keep you updated on Maya's trach dilemas. We love our Maya whether she has her trach or not, but are very anxious to see it removed.

Thanks for all your thoughts and prayers
The Kelly Clan

Easter

2008-03-27T15:12:00.001-07:00

We had a wonderful Easter, and I hope you all did too. The girls were so adorable, I thought I would share some cute pictures!

Easter 2008

The Zipper continued

2008-03-27T15:01:00.000-07:00

SO, there is more to our zipper story. Just prior to Maya's sleep study she started having some horrible coughing spells that would last, NO JOKE, for over an hour at a time. This was non stop coughing with frank blood coming out of her trach too! She did this once on a Thursday, again on the Mon, Tues, and Wed proceding her sleep study. We changed her trach on the Wed. of her sleep study and things got better...I figured it was either her trach or her new inhaled steriod that she is on becuase she was fine for about 30 hours, then Friday morning (last week) she coughed so much that I called the Pulmonologist to see if this could be her new medication. They stated that it most likely was NOT, and to talk with the ENT on our visit Tuesday to see if something was in her airway. Later, Friday night after a long nap (which Maya never does) due to her extreme coughing fits, I walked over to play with Maya and noticed something very peculiar on her t-shirt. IT WAS THE LITTLE PLASTIC PIECE OF HER ZIPPER THAT WE THOUGHT SHE HAD SWALLOWED A FEW WEEKS AGO! All this time it was hanging out in her airway, and thank goodness it never caused an infection or pnuemonia. I guess she just somehow figured out how to clear it out of her airway. AND, eversince she has not had a single coughing fit, not even a little one. Well, Maya you sure know how to keep life interesting!

Maya and the Zipper

2008-02-25T13:02:00.000-08:00

You may or may not know this, but Maya loves to chew on things. It may be a habit as a parent you would be inclined to break, however for many reasons we have not kept Maya from this habit. What we do try to control is WHAT she chews on, however, that can be a challenge as well. Due to Maya NOT eating orally, we REALLY encourage her to put stuff in her mouth. If a child never eats and does not put things in their mouth they become "orally adversive"...meaning they won't put anything in their mouth, and will gag or vomit or cry if you even try to put something in their mouth. Maya does not like you putting stuff in her mouth, but does enjoy exploring orally on her own.

On to my story of last night. We were driving to my brother-in-law's house, home of the "Big Cousins", Katya and Sonya...a favorite destination point for us and our girls, plus they just got a new puppy! On the way there, Maya was chewing on the collar of her jacket (not something I love for her to chew on, but I was sitting in front and she is in the way back). About a block from Uncle Kurt's house, I notice Maya was choking...it took me a second to realize this was not just a coughing fit, like she has after eating sometimes, but she was scared, coughing, and crying, and her color was fading. Dean pulled over, I quickly pulled off the cap of her trach, which thankfully gave her an open airway to breathe through (with the cap on she breathes through her nose and mouth like we do). She was moving air, but still very uncomfortable, crying, and coughing a ton. I soon noticed that where she had been chewing on her jacket the top 2-3 teeth of the zipper and the tip top of the zipper (not the part you pull) was missing, and it was inside of Maya somewhere. We started to notice blood from her trach, so we quickly drove to Kurt's and called 911 (we were too far from the hospital for me to feel comfortable driving).

After an assessment from the Firemen who arrived, they called the ambulance. Dean got his 2nd drive in an ambulance...I still have yet to have that experience. Oddly enough, Maya clamed down just as the pulled into the ER at Mary Bridge Children's hospital here in Tacoma. With Maya's condition we skip the wait in the ER waiting room, and are very quickly seen. (a nice perk!) They did an X-ray to see if the zipper piece went into her lungs, which would definitely cause a terrible pnuemonia. The x-ray came back normal, and the doctor seemed to believe she swallowed it. The zipper piece would not show up on X-ray -it was plastic, but had it entered her lungs, she would have shown some definite changes in her lungs, as the body tried to fight it. So poor Maya cannot swallow thin liquids properly, but I guess she can swallow a zipper...silly girl...let's try some food next time...okay?!?!?

Maya was discharged after 2 hours (our fastest ER visit yet, and the only one we have been sent home from), and now we just monitor her to make she she did not aspirate her own saliva from all that coughing, into her lungs, which could cause pnuemonia too OR perhaps we will see a zipper piece in her diaper in the next day or two. So far she is just fine, went to school and is now on her rocking horse, bouncing and rocking away...I think she is going to be just fine.

As for Addy , she had a wonderful evening playing with her BIG Cousins and the new puppy...Thanks again Kurt for helping us out last night!

Portland

2008-02-25T12:57:00.001-08:00

Last weekend we had a fabulous long 5 day weekend in Portland with Grandma and Grandpa Royston. The weather was fabulous so we played at many parks, went to the zoo, and my dad even turned down the hot tub, so we could take a dip in the hot tub... enjoy the pictures. Click on My Montage to view the slide show of pictures.

My Montage 2/25/08

The Ultrasound

2008-02-08T19:15:00.000-08:00

So Maya and Addy will be welcoming another sister into the family. Three little girls...can you believe it?!?! Dean and I are thrilled to have 3 beautiful little girls. We can keep all the girl clothes, decorations, and toys...and hopefully Maya's clothing will continue to last through two more rounds of girls:-) Dean is definitely out numbered, but he adores his girls, and honestly was not sure what he would do with a boy. As long as our girls play "ball" , "chase", and make forts with him...he will be a pretty happy Daddy!

So far baby girl looks healthy and is measuring right on track for her June 17th C-section date. (due date is officially 6/24) She was quite a squimer and almost did not cooperate for us, as we were trying to discover her gender. She also was doing some lovely "head-butts" into my bladder, which may explain my need to go to the bathroom a TON! We will have a fetal echo-cardiogram done in about a month, which will hopefully rule out any heart defects. Here are some specific things they looked for on the ultrasound today, 4 heart chambers, a well developed right and left kidney, normal brain size, no cleft lip or palate...unfortunately, there are many things that Maya has that will not show up on an ultrasound, but is sure good to know that there is nothing wrong with what the doctors looked at today, and for that we are VERY thankful.

Please keep us in your thoughts and prayers

2008-02-05T10:43:00.000-08:00

The Kelly Family is doing great! However, we want to keep you all informed of some huge events coming up in ourlives. This Friday, Feb. 8th we will have our ultrasound. My anxiety regarding this exam is soley focused around the health of this new baby. While I have no reason to expect any concerns to show up on the ultrasound, Dean and I will be overwhelmed enough by a typical healthy baby...the thoughts that come to the surface of my mind regarding the possiblity of a health issue cause moments of fear and worry. I must say for the most part we are peaceful and excited about baby #3...this being our last, we are savoring these special moments that only happen once (back pain, waking often at night from discomfort, over-tiredness...heehee, actually it is the flutters in the belly that are the most fun, and Addy patting my now emerging tummy and saying "baby", eventhough she has no clue there is really a baby in there.)

On another note, Maya has a HUGE day on March 19th. She will have a sleep study, where she will sleep all night with her trach plugged. We have done small trials at home for 30-45 minutes where she has done fabulously well, but 12 hours is a MUCH longer time. IF Maya passes the study and is able to tolerate the night with her trach plugged, the trach will come out...if NOT, who knows. My emotions ARE SO READY for her trach to come out, for her to graduate from needing nursing, and for our home to be occuppied with family (and of course visitors). However, there is the reality that she may have sleep apnea issues, or that her airway could collapse some. Also keep in mind that we are NOT allowed to let Maya sleep all night with her cap because it is dangerous. She is having to breathe with a tube blocking a portion or her airway, which means she has to push air around the tube to reach her nose and mouth. It will be MUCH easier for her to breath with the tube "out " of her airway. So this is a big deal. She needs to pass this study to get her trach out, and it is really hard to know if she will be successful.

Maya has NEVER been stronger or healthier. When her trach cap/plug is coughed off during the day, she tries to put it back on, as if she know she is supposed to breathe through her mouth and nose and NOT her trach. She is sick less frequently than Addy (who is also rarely sick). She has more energy to walk around and play than ever before. So I believe she is at her best...so we better give this a try. While I am not expecting her to pass with flying colors, I have never been more excited to have her trach out, and to figure out life without nursing. YES! It will have its challenges, and YES! we will have more work to do, BUT Maya WILL be a different kid without her trach, and we will have more freedom to go places with her, and she will have to learn some independence (as things have always been done for her)...AND honestly I believe it is time for some independence.

Please keep this Friday and March 19th in your thoughts and prayers. You are all such a source of strength for our family. I am SO grateful we do not have to journey our road of life without you all!

Maya is already home from surgery

2008-01-11T16:14:00.000-08:00

We have been through a LOT with Maya, and today makred a very important milestone...a surgery without an overnight stay. We only had one prior to this with her ear tubes, but I was more uncertain about this procedure as there was actually an incision involved and the ENT checked out a few things with Maya as well.

1. He scoped her airway to make sure it looked healthy enough to removed the trach, if she passes a sleep study. RESULT: her airway looked great, and the pictures we received post surgery reminds us just how much of her airway her trach actually takes up...it will be easier for her to breathe without the trach in the way.

2. He dialated the area near the opening of her esophogus to increase the opening alomost 3 times the size it was due to scar tissue...this should have some positive effects once Maya heals up.

3. He checked her ears and started her on antibiotics since an infection was present...not a big deal for Maya, she has many ear infections, but it is good to know her ear tubes are still in good shape.

4. she received injections of BoTox in 2 of the 4 main salavary glands to help manage her secretions. The original plan was to do ALL glands, but her drooling had decreased some recently, and drying her out too much could cause dental cavaties...so we decided to do 2, and we could always do all 4 next time. It is hard to tell how the BoTox is working, as Maya is drooling some, NOT a ton, due mostly to the fact that I believe her throat is pretty sore today...and she might not want to swallow yet.

Overall the day was great, once she was awake she was back to her normal self in no time. She even was riding on her new rocking horse shortly after we arrived home today at 1:30. Today was a good reminder of how healthy she is. I think a typical kid would have handled this procedure in a similar manner to Maya, other than the fact that Maya was very happy to walk right out the door on her way to surgery with the anestheiologists, which makes this ALL much easier on mom and dad. I hope the dialation and the BoTox will help her manage her secretions better and possibly allows us to start tasting orally again. Only time will tell. Addy spent the day with her grandma and is happy to have Maya home...they are now both playing happily in Maya's room...for a surgery day, you could not ask for better than what we experienced today!

Christmas happenings

2008-01-03T20:52:00.000-08:00

(first picture)
Marty and the girls

(second picture)
Babushka and Giampa (Dean's folks) were here for Christmas...it was so fun to see them and Addy learned to say "Babu"- our nick name for Dean's mom.

(Third Picture)
Maya and Addy playing with their new Little People Farm set. I cannot believe they are playing together!(I actually caught Addy in this picture signing "thank you")

Our Christmas though wonderful, did not start off on the right foot. The day before Dean's birthday (12/17) Dean had an emergency appendectomy. Later that week our truck got a flat tire, Addy's bedroom door fell off its hinges, and our dishwasher broke. Not to mention our plans to go to Portland had to be cancelled, which meant we also did not have night nurses for 5 nights. The wonderful part is that Dean is doing great, he is now back at work 2 weeks post surgery, driving, and though he is not allowed to lift the girls for 2 more weeks he is up off the couch and able to help me around the house (which I am VERY grateful for). My family rearranged their Christmas to see us for the weekend befor Christmas to celebrate AND to help me out with the girls. (thanks mom and Holly for all your extra efforts) Dean's family was a huge help as well. Dean's brother stayed with Dean the night of surgery, and helped the following night when Dean got home and Maya got sick...thank you Kurt! And then Dean's family was here for Christmas through New Years so I had a lot of help from his parents around the house and helping with the girls. We also had a wonderful visit with them as well. Dean and I are very blessed to have such wonderful supportive parents AND siblings.

As for the girls Addy has started her career as a singer and will sing babble songs over and over for long periods of time with the sweetest little voice you ever heard. She has also become AS obsessed as Maya is with the Singing Time videos. She does her best to mimic ALL the signs, and many of them she is getting quite proficient at. She is also gaining some pretty impressive vocabulary words for a 15 month old, like "flower", Bless you,""thank you" and many other cute words like "Ni-Ni, for night, night" and noises to describe animals "neigh", "moo", buff(for dog). We are amazed at normal speech developement.

Maya is doing well too. She has remained extremely healthy aside from her Christmas bug, that was very minor. She has only missed 2 school days due to illness (just before Christmas) this entire year. She is trying to transition back to the school routine which has proved to be quite challenging for her...hopefully it will get better. Her secretions have suddenly decreased, and despite the change we still plan to go ahead with her procedure next Friday to scope her airway and possibly inject some BoTox to help manage the secretions. Maya is LOVING a number of new toys from Christmas: Her new springy rocking horse, the Little People animals and vehicles, new play dough, her new light Bright (which is a chellenge, but she is very determined to figure it out), and a number of new books. After next Friday, Maya will begin to train on wearing a nasal canula at night for Oxygen, which she needs to adapt to for her trach to come out, as they believe she will still need the oxygen at night. We fear this may be a bit of a battle, but a neccisary one at that.

I think most of you all know that I am now about 15 and 1/2 weeks pregnant and feeling pretty good. My tummy is starting show and pants are getting tighter. I am still tired a lot (but with two kids to chase around all day what can you expect). I will have a high level ultrasound on February 8th that hopefully will help us dicover the gender of this baby and the over health too. My C-section date is currently set for June 17th, so the baby will be here by that day if not sooner...though at this point the 17th seems soon enough!!!

I hope the New Year is treating you all well.
Many Blessing to you all!

a little update

2007-12-05T22:37:00.000-08:00

Both girls continue to be healthy and active. Maya is STILL drooling an unbelievable amount. I am simply counting the days until her ENT injects that botox into her salivary glands. We recently learned what Maya needs to accomplish medical-wise prior to getting her trach out. First of all, she will need to tolerate receiving Oxygen at night (she only needs it at night) in a method different than she is receiving it currently. Now, she receives her O2 through her mist collar (which simply is a small mask that goes over her trach and humidifies her airway at nighttime). However, without a trach, she cannot use the mist collar. Instead she will need to use a nasal cannula. I am not sure if any of you have used one of these (I know some of your kids have), but I just wonder if Maya will put up with little prongs tickling the insides of her tiny little nares while she is sleeping. An O2 tent was mentioned once as well, but I can only fathom how much that would cost!!! Needless to say, after Maya's procedure in January (esophageal dilation and botox) she will begin nasal cannula "boot camp." She will be given O2 through the collar AND cannula, which means two large O2 tanks in her room (remind me not to burn any candles near her room!)

THEN, she will require a sleep study. This means she will spend the night at Children's hospital in Seattle, with numerous wires attached to her while she sleeps. However, she will also NEED to have her trach capped, and tolerate her nasal cannula along with all these wires, and not have any signs of distress...sounds a little impossible to me, BUT it HAS TO HAPPEN for her to get her trach out!!!

But, can I just tell you how cute she is! I got a sneak peek in her preschool class today (her formula spilled before school even started, so I had to bring in more, and was invited to stay awhile...which I can NEVER turn down an adorable group of 3 and 4 year olds, who mostly sign better than I do). As soon as I entered the room I found her in her favorite spot...painting at the paint easel...she was painting some green masterpiece! She spends a great deal of her time with her para educator with signing cards and pictures trying to work on communication. She even got some one on one time with the speech pathologist too. Then she just walked on over to where all the other kids were and sat at the table in the house keeping center and pretended to eat food right alongside them...pretty great stuff for a kid who does NOT eat with her mouth.
Later I moved to the books with a few other kids, and of course, over came Maya eventually and she decided to "plop" herself in my lap. I just love being in class with her...she is definitely not at all where the other kids are academically or socially, BUT she is learning so much and school is a wonderful experience for her. AND, it doesn't hurt that all the kids really like her!

Addy is doing great too! she has learned some new signs "tree" for Christmas tree, and our newest favorite is when she does the applause sign. You raise both hands and move your hands by twisting your wrists, and we always say "yeah"...it is just adorable...last night Maya was sitting at dinner with us and tasting some of the food, and Dean and I did our ASL "Yeah, Maya" signs, and Addy, quite proudly imitated us! She simply could not LOVE and ADORE her sister more!

Swallow study, ENT Appt, and BOTOX

2007-11-14T12:51:00.000-08:00

Can you believe at the age of 3 years my little girl is going to get botox?!?!? After some concern with Maya's increase in secretions and drowling, we discussed the possibility of giving Maya some botox to decrease her secretion production. Her ENT agreed that she would be a great candidate for botox, and that it should help a great deal. Basically, the botox would be injected into her main 4 salivary glands, which would cause the glands to not produce much secretions. The botox would wear off after 4-6 month, but we are very willing to give this a try. In order to do the procedure on Maya (a squirrely 3 year old), he would need to sedate her and do this in the OR. Fortunately, her ENT also needs to do a scope on her to figure out why her sphinkter (sp??) is not opening regularly to allow secretions or food to go down her esophogus. During Maya's swallow study only 2 out of 20 times did Maya's shinkter open to allow food to go down her esophogus. On the other attempts, no matter how hard Maya tried to swallow...AND she did try hard to swallow MOST of the time the shrinkter did not open and when her swallow was complete, she would aspirate ALL her food between swallows. This is not good because she could get pneumonia. SO, we will be having a procedure (day surgery) on the 11th of January to have Maya checked out, scoped, possibly dialate her esophogus (which may be not be functioning well because of scar tissue from previous surgeries), and finally given some botox.

When I scheduled this appointment, a number of the ladies at the front desk were joking about having Maya's ENT give them some of the remaining botox. It is so funny how many people really want to do botox for cosmetic reasons, when I had to really convince Dean that Maya would not look any different appearance wise if she had the botox done...which I thought was pretty cute. Until then, Maya will see her Cardiologist, her Pulmonologist, her nutritionist, her Craniofacial Dr., and have and echocardiogram done on her heart. All of this along with her procedure in January, will give us a good idea of when Maya may need to get her trach out. If she needs heart surgery this summer, there will be a push to get the trach out soon (spring most likely). If not, it will most likely be up to Dean and I, as to when we would like to attempt to take out the trach.

On less of a medical note, we are very excited to be spending the holiday with both sets of parents, and brothers. It is so nice to see family this time of year. Addy is walking a ton, trying to jump even though she cannot get off the ground, learning new words daily, and loving her big sister. Maya will NOT ignore her forever...Addy is convinced! Addy needs to watch Maya get on and off the bus each day, make sure Maya is using the potty chair properly (and checking for any sort of action in the potty), she wants to help feed Maya through her tummy tube, and spends hours putting a syringe into a feeding tube...in and out over and over, when Maya is in her corner reading, Addy is in the dorner playing and occasionally stepping on or sitting on Maya, and when Maya laughs, Addy Laughs, and when Maya coughs, Addy says "ca,ca" with concern, and when Maya cries, Addy will ocasionally sign "sad". They are really cute these days! I have even seen Maya smile a number of times at Addy...maybe it is not so bad to have a little sister after all!

Halloween

2007-11-14T12:43:00.001-08:00

ENT visit

2007-10-09T21:17:00.000-07:00

Maya went to Children's today to visit her ENT. Her secretions seem to have been worsened by her previous surgery, and both the ENT as well as our family has been greatly dissappointed. Unfortuately, there are no clear answers as to why. Maya was scoped through her nose into her airway (not a fun procedure at all), and her surgery has healed nicely. In a month we will return to Children's for a Swallow study and another ENT appointment to determine if her swallow is safe enough to get her trach removed. I must say my overall feelings were not positive today, partly because it was also VERY challenging to have a one year old with you during an appointment where you are in a tiny office with lots of "fun-looking" equipment. Not to mention the one year old that was weary, hungry and clingy during an aweful, scary looking procedure that I had to (along with 3 doctors) hold Maya down for. I had two VERY unhappy campers by the end of the procedure, and I was MOST definitely ready to go home. I think Addy has seen her LAST visit to Children's for awhile.., Anyone want to babysit her???

CHARGE get together

2007-10-08T18:28:00.000-07:00

Make photo slide shows at www.OneTrueMedia.com

Our local (Western WA) CHARGE friends got together in Bellingham this past Sunday. It is always so great to see the progress each child is making. I am still blown away by how different and similar all these kiddos are, but for me the best part is connecting with parents who know what it is like to have a child with CHARGE Syndrome, in a world where most people have never even heard of the Syndrome! I loved our get together...thank you Max (and your mommy) for allowing us into your beautiful home and hosting us. I wish I had taken some better pictures...I am sure I will have more to share when my friends post pictures on their web sites. I look forward to reconnecting in the Spring!

The Pumkin Patch

2007-10-08T13:28:00.000-07:00

On Friday our family visited the Pumkin Patch. We took the BIG Cousins along (Katya and Sonya) and went with our friends the Koetje Family. (It is their little boy, Jackson in many of the picures)We had a great time because the patch was really geared toward toddlers...and my neices are ussually game for an outing no matter what it is. Maya really loved looking at some of the animals at the farm, and both girls found some toddler toys to play with. I hope you enjoy the pictures!

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Potty Time!

2007-10-04T14:44:00.000-07:00

Well, I know we have just begun the long process to get Maya Potty trained, but we are having some great success! For a few months now, when Maya's night nurses notice her waking up in the morning they stick her on the potty....and wouldn't you know it...the girl will go about 75% of the time, if they get her on it quick enough. Now that school is in full swing, and the kids there are working hard at potty training too, I figured it was time to get Maya at least started on what will most likely be a long process. She now uses the potty 1st thing when she wakes up (good success), once at school (no success there yet), right when she gets home between noon and 12:30 (HUGE SUCCESS....she has gone EVERY day this week at this time!), at 3:45 (some success), after dinner (no success yet), and before bed (no success yet). Maya is so cute. She sits on the potty and reads her "Big Girl Potty" book. In fact, if she does uses the potty, she will start standing up, as if to say "all done". I really think she is starting to understand what this potty is for. I think we will continue with this routine for awhile, and see how it goes before I start some other creative measures to encourage her use of the potty.

Addy gets a kick out of Potty time too...no modesty for Maya, that's for sure. Nothing like using the potty with your one year old sister trying to see what kind of business you are doing. Addy is almost more interested in what Maya is doing, than Maya herself. I think it may be time for another potty:-)

Other updates on Maya:
Big ENT appointment on Tuesday next week...I hope we make a time line for trach removal (however, Maya's secretions have not been great since her esophogus surgery)

Maya continues to sign a lot and is making progress at school...sitting for story and circle time, and being on her feet much of the morning!

Maya is on a blenderized diet that is going well. She now eats 5 times a day (very slowly) and currently she does not eat at night time...which is a huge change!

Maya is on her feet a lot more at home...her energy and playfulness has increased noticably since school started.

Maya is now "eating" dinner with us every night, and we only use sign language at dinner time too. Maya gets a cup and a spoon or fork (she prefers the adult sized silver wear fork)and a cup with something strong tasting in it (BBQ sauce, sweet and sour sauce, cocktail sauce). She takes some of it to her mouth, but nothing amazing! We are still thrilled that she enjoys being at the table with us, and is very interested in food.

"Nurse" Marty

2007-09-18T16:21:00.000-07:00

I got to play nurse today! Maya's nurse called out today, and since it was only the 2nd day of school I decided (after conferring with her teacher), that I would play nurse today. It was pretty wonderful to have a peek at this amazing classroom. Maya's class is mostly 3 year olds, but there are three 4 year olds. I was SO impressed with how well Maya did. She sat on a chair and attended to the teacher some, but never completely scootched off the chair like I thought she would. She has an aid that helps her to get up and move around the classroom and keeps her from getting knocked over, BUT the best thing about her aid is that she is ALWAYS signing to Maya. Maya is getting so much language from the teacher, her aid, the classroom para and the other kids who know sign language. For the most part these are just typical 3 year olds who have hearing impairments, so Maya does get more assistance than the other kids, but they seem to really like her, and be interested in all of the "equipment" that comes to school with her. Maya played in the different classroom centers today and even painted a bus "yellow"...the color that the class is learning about.

I think my favorite part of the morning was watching Maya as the teacher read the class a story. Towards the end of the story, Maya started copying several of the signs the teacher signed...signs she has NEVER signed before. I am VERY impressed with Maya's dexterity...her fingers imitate signs really well.

Being at school also gave me an opportunity to brief the school nurse on Maya, and meet Maya's new OT. Her school is really wonderful...I think she will be happy here for a long time! What could make a Mommy and Daddy more happy!

Maya's first Day of school

2007-09-17T14:47:00.000-07:00

I cannot believe my little girl started school today. She even rode on the bus to and from school, and survived! Actually it is amazing that I survived. I never thought I would be one of those parents, but here I am! I was SO nervous last night...how will Maya be on the bus?, She has so much equipment to take to school for her trach, g-tube, and diapering, I just knew I had forgotten to pack SOMETHING, how will the other kids feel about Maya's differences?, What will Maya think of all these signing kiddos?, what will her teacher think of having a nurse in her classroom when Maya also has a one on one aid?, will Maya get too tired to make it all day?, will people not like all of her secretions?, will the school be able to reach me if they need to?, etc...

So Maya got picked up at 8:08 this morning and wore her cute little "toddler" sized Elmo backpack...she was too cute. I met her at the school with all her school supplies, and walked her in from the bus. She was greeted by two familiar faced kids...who knew her from birth-3 services. One little girl even grabbed her hand to pull her and show her where to hang up her coat and backpack. So Sweet! I left Maya as she got ready to "line up" to go into the room. She got off the bus right outside our front door around noon, and I got to find out all about her day!

Inside her backpack she had done some VERY creative artwork on a big piece of butcher paper and a paper plate. She signed "pencil, draw, and school" a few times, and gave me some very wonderful smiles. I think this school thing is going to be wonderful for her, and I definitely can see how it is going to increase her signing vocabulary and her desire to sign and communicate. I am so proud of my big girl. Dean even made it by for a late lunch and we got to chat all about her first day, and he signed to her about her day as well. It was the perfect closure to her first day!

Maya is feeling better!

2007-09-14T12:37:00.000-07:00

I woke up this morning to some loud noise! I really though that they were Addy's vocal chords, until I realized that she was still sound a sleep. The closer I listened, I could tell that they were echoingthrough the vents in our house all the way from Maya's room (Maya lives on the opposite side of the house and is with a nurse at night time and much of the day time as well). I walked into Maya's room to find her literally doing laps in her room and laughing, giggling, and smiling...she was feeling pretty good, AND was wearing her regular passimiur valve (which she has not tolerated now for a week since surgery). Maya is still not 100% (she cannot tolerate the cap to her trach yet, and is quite frothy at the mouth and nose.) After the good work out she gave herself upon waking up at 7AM, she crashed at 10AM for a 20 minute cat nap. Now, she is up again ready for her bath, and still wearing her regular valve on her trach!

At this point I think I will send her to school, and be prepared to pick her up early if she is too wiped out to make until noon. I really think she will enjoy getting out of the house, and meeting her new friends! I think Addy will be sad to see her sister leave in the morning, but on the other hand that will mean she can have Maya's room to herself for the morning.

Addy's Hips

2007-09-12T20:30:00.000-07:00

Today was an exciting day for us. Since Addy was 4 months old she has been diagnosed with Hip Dysplasia (her left hip was out of socket due to her breech position at birth). From 5months-10months Addy wore a very cumbersome Harness that basically kept her in a "frog-like" position with her legs. Finally, in July, Addy had had enough...even though she only had to wear the harness at bedtime, she refused to keep it on, and learned how to undo the harness. In June Addy had an X-ray to check her hips, and while there was improvement, the Dr. stated that it was too early to tell if the hips would indeed correct themselves or if she would have to undergo a surgery on her hips and wear a horrible looking "Spica" cast on both legs for months. Poor Dean...I think he has had nightmares since the beginning of this entire ordeal...he was CERTAIN that Addy would need this procedure since our luck was never terrific with Maya's health. Today Addy had an X-ray done on her hips to check to see once again if there was improvement. Much to our relief (especially Dean's), the Dr. stated that her hips looked "perfect". He wants to check them again in 6 months, but he is almost certain that after that check up we will be DONE with the hip issue!

This has been a huge relief to us. Maya, as you all know, has been through so much, and to have two daughters with medical needs that would cause Addy to loose the mobility that she has might put us over the edge. We are in a really wonderful stage. Maya is recovering from surgery and hopefully will start school next week. Maya is mobile and learning sign language really well. Addy is finally sleeping well at night, and is developing at lightening speed...it is definitely something new EVERY day! We are enjoying the new pace of life around her...I would not say that it is SLOW by any means, but it is not so tiring, which is giving us more energy to truly enjoy our little girls!

Hospital Visit

2007-09-10T21:20:00.000-07:00

Maya's trip to Children's went well. I thought I would make her a book about going to the hospital since she goes so frequently. We took pictures of the stuff we do every time she has a surgery. Some of the pics are pretty cute, so I thought I would share.

Here is a picture of Maya receiving her ID bracelet. It was so fun to actually have Maya engaged in this process. This was certainly a first for her.

After checking in, Maya receives an I.D. bracelet. This is the first time she was not OVERLY bothered by it. When she was little she would cry so hard when they put the bracelet on her, that they would not make her wear it. In fact, she was very proud to wear the bracelet, especially since she though that it was a watch. Yes, that is Maya signing "watch" just above the bracelet...she is too cute!

Finally, here is a picture of Maya standing on the scale all by herself to get weighed. No more "baby" scales for you BIG GIRL! In fact, she is stable enough to stand AND get a good reading on the scale...I think this is another "first" for Maya!

Hopefully, Maya will now have a book to help communicate with her when it is time for her next surgery. We expect a big Heart Surgery next Summer, and before that her trach needs to come out...but that is NOT really a surgery, but it WILL be a BIG trip up to Children's.

During this surgery her ENT lasered off two veinous masses of tissue in her esophagus. The surgery went smoothly and other than losing more blood than normal (since the masses were full of blood), Maya is recovering well. She has a lot of secretions, and most likely will for another week. Hopefully, she can start preschool next Monday, and in a week or so she will be 100% Maya again. She is fatigued and a bit fussy in the evenings, but she was markedly better today in comparison to yesterday...which is great news!

The Spray Park

2007-09-02T14:44:00.001-07:00

Here are some fun pictures of our niecesplaying with Addy at the local spray park. It was fun to watch them a few days just before school started. They are such great girls and they are VERY helpful with Addy. Sonya will be in 2nd grade and Katya in 5th grade...we wish they could stay young forever as they are so sweet towards us. It's too bad pre-teenage years are around the corner...oh, maybe it won't be so bad!

Welcome to our new Blog

2007-09-02T14:00:00.000-07:00

Hello Friends and Family,
Now that our girls are growing up more and more, we decided we wanted to begin a new website that we can keep throughout their childhood. We thank you all for your consistant support of our family and we hope that we have many exciting things to share on our new Blog. Here are the latest videos from our amazing girls.

We will try to get this blog up and running soon. If you have friends that you trust, and would like us to invite them to read our site. Please e-mail us their e-mail address. That will be the easiest way to invite them.
Thanks,
The Kelly Family

Maya is reading a book!

My Montage 9/1/07

Addy is Walking!