Last week we had a procedure to replace her g/j tube... not a big deal in comparison to what she has already been through in her short life, but still I can't say that repetition makes it any easier to cope with. She is still poked, pricked, pinned down to the bed, and her face fills with panic and real tears. Six short days later (these tubes should last for at least 4 months for the record...) the tube decided to pop out from Cecily's adorable belly. Luckily our nurse was at home with Cecily and me because I wouldn't say I was very calm...
Cecily weathered the storm, another procedure, and all that comes with it like a champ - but not without her fair share of pain, hiccups and sleepless nights. The vomitting returned and it seems as if we've taken a giant leap backwards. We hate to see Cecily struggle and we hate to think we're helpless in this battle. Instead, we're choosing to hope and pray that things get better and we're continuing our search for answers. There have definitely been days over the last two weeks where I thought I was going to lose "it" - whatever "it" might be.
I fell into a funk and lost my happy place for a few days... but alas there was no time for this! Cecily was through the woods so we decided to go forth with our scheduled room makeover. We had a team of wonderful volunteers helping us and Grammy and Grampy wanted some time with the grandbabies. Since we now have a nurse helping us they don't see the kiddos as much as they would like! I threw myself into this project for a loveable and sweet boy and the clouds started to part. (We completed the room on Sunday and you can check out Eric's story
to learn more about his battle with autism, his amazing family and pictures of the beautiful room - if I do say so myself!)
But because we are committed to finding the silver lining in a week with more ups than downs - we'll focus on the progress we're seeing with Cecily's therapy. I'm looking forward to telling Karla, Cecily's fantastic PT, that she is taking more weight on her feet! She is pressing to a stand (with assistance) and she is bouncing the way Noah used to bounce in her exersaucer. She is sitting in Noah's pool (unassisted) and her agility on the floor amazes us. She is so fast that now it feels like we are constantly chasing her and her tubes - and untangling her over and over again. In addition, Cecily started to nod "yes" and she continues to parrot our talking and movements. We are very happy with this progress because if she can do this while she is having pain - imagine what she could do without it!
I think that this small, tiny charity fuels me on days when my tank may be on empty. We want to share the positive spirit that Cecily breathes into us with other families. She fuels us to fight. We hope when our lives slow down that we can devote more time and energy to Cecily's Closet to bring more awareness to the various challenges children with special needs face. Our first priority is and always will be our own kids. But we know when we have more time we can do so much more!
It's a new week! And I've already had some small but wonderful victories. Noah drew the letter "A" today all by himself, Cecily pushed up on her legs and arms and moved an inch forward in the crawl position, and both kids are napping at the same time! Now that is something to celebrate! Onwards and upwards!
One of the best gifts my parents ever gave me was the gift of a sister. I thank God for her every day - especially over the past year and a half. She was with me the night we found out there might be something special about Cecily and she has flown out from Japan twice to help us through some difficult times. She is giving, generous and selfless. She is patient and caring and she is remarkable in many ways. She is a nurse and there could not be a better person suited for this job than my sister. She truly cares about her patients - just like she truly cares about her family.
I just picked up the mail and there was a big package. I thought Brien must have been doing his online shopping...(oh yes...) but alas it was a gift from my sister for the kids. She is a very doting Auntie! Noah loves his Auntie Neeta and Cecily will grow to love her in the same way. Cecily has a wardrobe full of dresses and jackets and shoes ranging from 0-3yrs... courtesy of her Auntie. Since she has two adorable boys - she enjoys spoling the only grandaugther in the family. And of course she knows that I love it, too! I feel less guilty dressing Cecily like a princess if the clothes come from someone else. (They have to get worn don't they?) The package today contained some cute tights for Cecily with flowers, patterns and stripes. As Cecily is my little doll it will be no surprise to those of you that know me that I quickly changed her to try on the new stuff! (Cecily is a willing participant) In fact, today at therapy Cecily was always trying to look in the mirror to check out her progress and her big toothy grin...) Does this remind anyone of someone in our family? Haha...
My sister sends this package when really we should be celebrating her. This is just another perfect example of how she is always thinking of others and putting them first. Noah is asleep but when he wakes up he will be so excited to see what Auntie Neeta sent him. In fact, I think Daddy will be excited to. I am sure they will be blowing up the volcano tonight...
I wish everyone could have a sister. I often take her for granted. I often scream at her when I am just angry or upset and she just listens. She knows I don't mean it. She understands me. I don't mean to hurt the preson who would protect me from anything. I guess I just know she is strong enough to take it and that she will love me no matter what. I hate it when I have these mini-outbreaks or meltdowns but I love having someone that allows me to rant and rave like a crazy lady when the days are long and hard and my "glass is half-full" attitude wavers from the optimistic, positive place where I strive to live.
I just want to say Thank You to my wonderful sister. She has been my guardian for as long as I can remember. She pushed me to be my best when I was in school and she continues to push me to be the best Mom, person, caregiver, that I can be. She is always sending ideas on how to grow the charity and she is our single largest contributor. She is passionate about her kids and my kids. She is a wonderful Godmother. She is a wonderful mother. She is a wonderful sister. I wish everyone could have a sister like her. But all I can say is she is taken... Onwards and upwards!
Cecily's Closet was written up in the latest edition of the Beach Break News! Pick up a copy of the paper today! Thank you to Nicole Steele and Steele Realty for writing and publishing an article on our little charity. We appreciate it! You can click on the small images at the bottom of this blog entry to read the article!
This weekend we celebrated the life and spirit of Judith Kuster Ackerly at the Relay for Life downtown. It was wonderful to get together with family and friends and walk for a wonderful cause. Noah had a blast playing with his cousins and camping on the grass. Cecily continued to show her flirting skills with her new friend, Chase. Life is good. We're having a few challenges with Cecily's new g/j tube but hopefully things will get better tomorrow. Thank you to the families that reached out to us this weekend with donations for Cecily's Closet. We are very grateful! Look for more equipment on our site soon! Onwards and upwards!
I am reposting this email from the Exceptional Family Resource Center (EFRC) for those of you who may not have heard about this!
If your services were changed without an IPP team meeting, you are entitled to a meeting now to ask to restore them.
At the request of The Arc and Assembly Member Wesley Chesbro, the state has agreed to send notices to all regional centers advising them that people with developmental disabilities still have the right to participate in planning their own services.
This a huge step for people whose services were reduced, eliminated, or changed in any way without Individual Program Plan (IPP) of Individualized Family Service Plan (IFSP) team meetings, and for anyone who faces that disturbing possibility in the future.
It was Assembly Bill 2702, sponsored by The Arc and introduced for us by Assembly Member Chesbro. With the bill progressing toward possible adoption as the legislative session winds toward adjournment,The Arc and Mr. Chesbro were able to reach an agreement with the Department of Developmental Services. Under the agreement, DDS will work with The Arc, Disability Rights California, and others to develop the regional center notice. With that agreement, the bill is no longer necessary, and we agreed to withdraw it from consideration.
If you are one of the consumers whose services were changed without an IPP/IFSP team meeting in the last year, or if you are the parent or other designated representative or conservator for someone that happened to, you can request a planning team meeting now to more appropriately address your needs. Remember you can call for a team meeting no matter what the change was. Other legislation that we, Disability Rights California, and Mr. Chesbro sponsored this year even clarifies that everyone is to be told about any change that includes an exceptions process.
As always, if the regional center staff doesn’t agree to hold an IPP/IFSP meeting at your request, or if you and they can't agree on services when the meeting is held, you have a right to appeal to a fair hearing.
Here’s a useful Disability Rights California publication about IPPs and your appeal rights: http://www.disabilityrightsca.org/pubs/503801.pdf
Cecily awoke from her procedure looking like a little doll! Thanks to the wonderful care at Rady's and Sharp Memorial she is already resting at home in her crib. She is truly a little trooper. She only had screams of delight today! She was intent on getting as much attention as possible - especially from her neighbor in the crib next to her. She was very eager to capture his attention. I think we're going to have to keep an eye on Cecily... she is turning out to be quite a flirt! It was a joy to see all of the nurses at Rady's and to hear their collective remarks on the amazing changes they are seeing in Cecily. Thank you to Dr. Wood and nurse Nancy for always keeping Cecily on the right path. Onwards and upwards!
What a week! Cecily's amazing progress continues... There are no words for how thrilled we are with her development. It is a miracle and even the doctors continue to be surprised and impressed! Her vision is improving, she is gaining weight, she is letting us put food in her mouth, and she is now 30.5 inches! If you were to see the little tyke you would never think she was under-weight! In fact, she is looking like a butter ball turkey! Even Noah remarked today that Cecily is getting too big...I can't hold her...
Of course this good news is slightly tempered as we found out late last week that Cecily needs yet another surgery. Her kidney reflux is not getting better so we'll tackle that and some other lingering stuff in October. For now, we're just working to get her in for a quick procedure to change her every-leaking g/j tube! Our little angel is so active that she has mananged to make the tube quite loose. She may not be crawling but she is fast and she is constantly on the move. She drags her body across the floor to get to her desired destination. She has found her way to get around and she won't be stopped.
Perhaps the best part of this week is seeing Noah really incorporate Cecily into his pretend play. As Cecilys is mobile, and she wants to be wherever he is, he pretends Cecly is a shark, or a pirate, or a superhero that is chasing him. She screams at him and tries to get his beautiful hair (her favorite target), and he adores the attention from his baby sister. The interaction is a dream come true and I think this is just the beginning of their "playing" together. Of course, this is the first time that Cecily is also "taking" his toys... this is not going over as well... but I continue to be surprised by Noah's ability to share with Cecily. He will look at her with his toy, take it, and then say, "ok Cec... you can have that one" if she so much as whimpers or gives him a funny look. (by the way these looks are also priceless...)
Noah loves to perform for Cecily because she just stares at him with pure delight. Her face lights up in the morning when he comes in to see her and he is the only person that can stop her from crying with his "happy baby" song. He created this one day and now every time she cries he sings it. He is pure magic for Cecily and Cecily is truly Noah's #1 fan. It almost makes me want to have another baby to add to the chaos... Onwards & upwards!
Cecily is on a roll in more ways than one. She is just growing and thriving and showing us more and more of her very funny personality. She is a very determined little girl and we are very proud of her. We were at Children's today for a few more tests and a check on her ever changing tubes... when she waved at me! I've thought she may have waved before but today it was purposeful. She looked at me waving - looked at her hand - then looked back and waved! It was magic! Then one of my very favorite residents came by and said hello! I was furiously trying to capture this wave on video when I told her about it! The lovely Dr. Baker bent down and said hi Cecily with a big wave - and she beamed and waved back! I was even more thrilled!
I wish I had appreciated Noah's firsts in the same way I appreciate Cecily's. I am now very aware of all of Noah's progressions and I'm very quick to acknowledge his success with the same crazy enthusiasm that we give to Cecily. Life is short! If you are not going to be your kid's biggest cheerleader then who is? I think there could never be too many kisses, hugs, and I'm proud of you moments for the kiddos!
Noah loves to be told what a good little boy he is. Our dear Aunty Mary recently sent Noah a little card and a letter telling him what a good boy he was! He was so thrilled he has me read him the card every day. She also included a five dollar bill - which was a huge hit! He not only thinks he is rich but he wants to save it! Ahhh a little man after my own heart :)
We are on a lovely journey and each day brings a new thing to celebrate. Today we celebrate Cecily's wave! We all sat at the dinner table waving at each other for a good ten minutes. Noah thought we were very funny and Cecily just sat there screaming in delight. We were all screaming and we just smiled to think what a crazy bunch we are! It was fun! I hope the kiddos remember this when they get older. We are looking forward and we are very optimistic about the future!
A quick note on the charity! I want to thank all of the wonderful people who continue to reach inside their own hearts and closets to give to families in need. My co-workers have amazed me in more ways than I could ever hope to thank. This weekend we received donations of several mattresses, sheets, bean bags and more. Today, we received enough stuff to do a very cute baby room! What a blessing to work with such giving and generous people.
Plus - we just redid the site a little bit. We're trying to streamline so people who find the site can quickly tell that we provide 3 main services: room makeovers, equipment recycling, and the promotion of local resources. We hope you like the improvements. Onwards and upwards!
There is a look in a child's eye that can tell you so much about what they are thinking. I can catch Noah in a sideways glance and immediately know if he is intent on a building task or plotting his next mega-car crash complete with danger and explosions... Even as a newborn infant he had a sparkle in his eye. This is one of the ways I felt connected and close to him. I missed this type of connection with Cecily and I became acutely aware of this in the first few months of her life. It was my inner Mommy radar telling me that there might be something special with Cecily that we were all missing. Time would tell.
After many months of missing this connection I decided to let it go and make my own way. We have found many wonderful ways to connect with Cecily from infant massage, to cuddles, to kissy face, letting her pull our hair and climb on us like a tree. I love all of these things and I love that they are our unique ways of connecting with our little angel.
I was speaking to my dear sister and giving her the play by play of our busy life - recounting every small and tiny achievement Cecily had made since our last phone call. As I hung up the phone I sat down and realized that I was seeing a new sparkle in Cecily's eye. Articulating this experience with words is harder than I thought it would be... but the moment was so important and so raw that I had to at least try. She was looking at me with a knowing look. Her eyes were sparkling with curiosity. She was engaged with me in a totally new way. She looked like she was up to trouble and I loved it!
We appreciate Cecily and her unique way of communicating with us. A sparkle in the eye or not - she is perfect to us in every imaginable way. This incident is important to me because I think we have finally let go of our expecations and we are just enjoying. We are not looking for what might be. We are not living with fear. We are just enjoying our angel and watching her explore and grow before us. I sat back and just watched with delight.
To explain the journey that Cecily has been on in a succint way is impossible. The endless doctor appointments, the quest for answers, the nervous nights watching her in the hospital and the fear of the unknown. For a long time Cecily was a project for our family. We didn't intend it to be like this - it just happened. We hated thinking we were trying to fit her into a box with endless therapy and appointments. Were we doing the right thing for Cecily? Or were we desperately trying to make her more like Noah? The confusion, the information the prognosis, the what ifs all just loomed over us. Today when we look at Cecily we just see our baby. We see everything she is giving us! We see the empathy that Noah has at three years old. We see the appreciation for the simple things. We will forever owe Cecily for opening up our eyes and letting them see the world differently. She has made the mundane activities in life sparkle. She is pure sparkle. She is Cecily. Onwards and upwards!