Home at last

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

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

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