December 31, 2009 - Discharge day from Blythedale!

Chloe's home! We wanted to share this with all who have followed Chloe's progress through this terrible illness. Our deepest thanks to all who have helped us work through this very difficult time the past 3 months. A very special thank you to all the therapists, nurses, physicians and social workers who have treated and cared for Chloe. We don't know how we would have managed without your love and support. From our family to yours, thank you and have a wonderful New Year!

Please follow this link to view Chloe's Journey.

www.facebook.com/video/video.php?v=264436780434

Much love, Rethier, Michelle, Olivia & Chloe

Christmas Day!

Merry Christmas All!

So we did get our Christmas wish of taking Chloe home for the holidays....sort of. Two days before Christmas Chloe was unable to hold down her feeds and would subsequently throw up all of her formula. This was happening every feed so the team at Blythedale decided it was in Chloe's best interest that her feeds be slowed down and given continuously with only one hour break between feeds. They also decided that it was best that she return to the hospital after Christmas so that she can have a GI (gastrointestinal) consult if the vomiting continues. Very bitter sweet in the sense that we were able to have Chloe home for Christmas but all the while knowing that she will have to return Saturday evening.

Of course, we are saddened that her discharge from the hospital is not permanent - but we do know that this is definitely in her best interest. We want her home for our own personal selfish reasons. I'm sure you can all understand our position.

That being said, I'm going to end this so that I can spend time with Chloe and our wonderful family! Happy Holidays, Merry Xmas and we wish you all a safe and happy day! We love you all and wish you and yours nothing but the best!

Rethier, Michelle, Olivia & Chloe

December 21 - Blythedale - Day 32

I can’t believe that it’s winter and Christmas is upon us. It doesn’t seem too long ago that we were at the park and putting Chloe in the swing for the first time. I cried the other day when Olivia pointed to the park we went to just two weeks before we came to the hospital. It’s a park we would go to on Saturday morning when we weren’t out by my parents. I remember sharing a popsicle with Olivia and putting the two girls side by side on the swing set and taking pictures.

We have tried our best to get ready for the holidays. I took the past few days to be home with Olivia. It was my first time home in three weeks. It felt different. It was nice to be in the apartment but Olivia and I both felt something was off. We kept to her routine – I took her to school and went to her Christmas party as I’ve always done. She was so happy with her friends and jumping around. That night I had a surprise waiting for her – a Christmas tree and a homecooked meal (I haven’t really cooked since October). Olivia and I put on Christmas music, decorated the tree, and then ate dinner by candlelight. It was a really nice moment but sad at the same time. There was a quiet feeling to Olivia that night. There was a quiet feeling to me as well. So, we treated ourselves to some cupcakes and snuggled a bit on the couch.

While I was at home with Olivia, Reth and our team of doctors, social workers and therapists were working hard to make a Christmas wish come true. We had said since the beginning of our time at Blythedale that, if at all possible, we wanted to be home for Christmas. Chloe has been showing improvement throughout and though she can stay longer, our team has pushed for our discharge date. We are all cautiously optimistic but our plan seems to be headed in the right direction. With the great help of our wonderful physical therapist who has been there for each and every one of us throughout our stay, social work was able to put through paper work to approve 5x/week therapies in our home. Chloe will qualify for Early Intervention services through NY State but it will take about 30 days to process her evaluations. In the interim, Visiting Nurses Service will provide her therapies. We will have a family meeting tomorrow to talk about our discharge plan and finalize our stay. Already we have received our medical supplies to have Chloe at home and will make arrangements to come back and have her fitted for a brand new stroller in the next week. A lot is riding on the paperwork and this meeting tomorrow and we hope and pray we hear good news.

We will keep you posted over the next couple days but our tentative date of discharge will be Christmas Eve. Chloe has had a nice few days with Reth. He was able to spend some time with her during her therapy sessions and see how far she has come. I, too, saw a different baby girl after being away for a few days. Chloe is much more alert these days and she is soothed more easily. Still, she does not enjoy being moved and being repositioned but she is easily calmed and more willing to engage. She has gained much more head control which we notice when she sits upright in her stroller or chair, or even when we hold her in our arms. Her sleeping pattern has also changed a bit for the better. We decided to give her a small dose of Melatonin to help her with her sleep cycles and she has been much easier at night. Also, we have brought her Phenobarbital dose down a bit more since her blood levels show that her body is reacting well to the medicine changes. We have pushed Chloe and ourselves to make it to Christmas and though her stay can be longer, we feel that we have given her the greatest start and now we need to bring her home and continue her rehab as a family and rebuild our life together.

We hope and pray that our Christmas wish will come true.

Much love and thanks,

Michelle, Reth, Olivia and Chloe

December 13 - Blythedale - Day 24

It was an uneventful week for Chloe. I know we can't always expect to have an upward slope in our road but we kind of tapered a bit as Chloe began to show signs of her sleep schedule changing again. Most nights this past week, she has been awake until after midnight and would sleep during the first part of the day. This obviously posed a challenge for her therapists in that she was not alert enough to participate in their tasks and Chloe would become agitated by being positioned and moved around when all she wanted to do was rest. In truth, it was a hard week to witness. I know there will be ups and downs but she fussed, cried, fought and slept through many of the things we saw her do days before.

It is a battle. Some say she has been through a traumatic experience and her brain and body need to rest while others say that we need to wake her every so often so that she begins to anticipate the routine of her day. Both sides are right but where is the medium? One of the biggest signs we need to watch for is her sleepiness as this would indicate possible increase of brain fluid and pressure or her shunt not working properly. It's so hard to know. I think back to when the girls were newborns and how they would sleep most of the day and only be awake for a couple hours at a time, if that. That seems to be where we are. We are trying our best to follow Chloe's lead while trying to nudge her into some sort of day and night routine. We are back to swaddling her at night which she always loved anyway so we hope that in the next few days we will take another turn and continue on our climb.

Don't get me wrong, the whole week was not completely void of any positive events. Chloe has shown us that she has a bit more head control. She has been having a lot of tummy time since we have been here. Using a big yoga ball, Chloe practiced bringing over and controlling her body as we helped her roll from back to belly to back. She would cry because it was hard work but she did it over and over again. She brought her head up, her shoulder and arm over, and cleared her airway. Being on the big ball helps to take the pressure of gravity pulling down Chloe's head so with just that bit of help she is able to find success. Chloe also sat in a swing later in the week. Though she was asleep for most of this, Chloe sat in her tumbleform on a platform swing and enjoyed the motion of being slightly pushed forward/backward and side to side. We didn't use any towels to prop her head; she did it on her own. When she fell into a deeper sleep, her head would fall slightly to the left, but most times she would find her midline on her own. A great sign was when she even brought her hands together independently.

We pray and hope for more moments like this during the coming week - for a well rested baby at night and a more wakeful and playful baby during the day.

Christmas is coming soon, today is her 10 month mark and I pray and beg with all I have left in me to be witness to... well, I don't want to say miracle because I know that I've already been granted that - I have Chloe next to me. But what I would do to bring her home... I even take a step back - what I would do to see her smile and beam and be happy. It has been a hard week to hear her cries and whines. I go back to the days when I always prayed that I have a healthy and happy baby. Healthy we are working on and have a plan but I have not seen my little girl smile for over two months and, well... it hurts. I look into her eyes when I hold her or as she lays in front of me as we play and I can see her eyes shine but I wait in heartache to see her beautiful, big smile come back to me to let me know things will be okay.

A lot to ask... I know. She has been through a lot and has shown such improvement and believe me, I could not be more proud or feel more blessed for what she has overcome but like I said, it just... hurts.

December 8 - Blythedale - Day 19

Two months...

It's still a hard reality to stomach. It still feels like a nightmare and we still wish and hope we will wake up one day to find ourselves back at home altogether. Will we ever wish any different? Probably not.

We try everyday to keep moving forward and stay strong for our girls. Chloe has had an exciting couple days this week. Towards the end of last week, her speech therapist began experimenting with different smells and various flavored oral stimulation tools to observe how Chloe reacts. She seemed to enjoy lemon flavored swabs and showed great movement and coordination of her lips and tongue. Yesterday, we attempted her first taste with rice cereal. Before getting sick, Chloe had been eating all cereals and purees and thoroughly enjoyed food so this was very exciting. At first, Chloe played with the mush and cupped her tongue as if she were searching for a bottle nipple but in the end was fairly successful in accepting a small spoonful of rice. She demonstrated a good swallow and seemed to like the taste. This morning, we tried again but were not as successful since Chloe was much more tired and agitated but she was still accepting the idea of food so we are headed in the right direction.

Another positive step we have taken is a change in her seizure medicine. Last week, Chloe was put on an EEG to monitor her brain activity. The electrodes were only placed for half an hour but the final report showed no seizure activity in the short time and her blood levels came back with good numbers. The neurologist here was able to take Chloe off one medicine, Topomax, and increase another called Keppra to make up the difference. Keppra has less side effects and is a good medicine for long term use. Starting today, we are also lessening, very very slowly, Chloe's Phenobarbital. This drug is her strongest seizure medicine and the one with most side effects and not great for long term use. It is difficult to wean a child from this particular drug because it needs to be done very slowly so that it will not induce the chance of seizure nor increase the chance of withdrawal. Tapering off Chloe's medications is a bit of a guessing game because it all depends on how her body reacts. We are closely monitoring her alertness, movements and behaviors and hope and pray that she continues to do well with the adjustments.

Physically, Chloe continues to build strength. She shows a little more control of her body each day, though we still have our battles of crying and protest. She is still healing and trying to find peace with her body but slowly, slowly...

An update on Olivia:

We have to say that we are so proud of Olivia. In these past two weeks, we have not heard her complain. Don't get us wrong, she cries for whichever parent she is not with and cries for her sister - she misses her family being together but what three year old wouldn't? But, what has stuck out to me the most is that she is really happy to be visiting her sister at the hospital, being with her at 'school' and walking around to see the different classrooms and therapy rooms. She has not asked any questions about the different chairs or toys or pointed out how people look different. It amazes me! I've been waiting for her to approach the topic of differences but she has accepted this world as a norm completely on her own and I am proud of her. I'm sure the questions will come at some point but if you could see how she lovingly and very proudly keeps Chloe company and plays with her on her mat or follows next to her stroller without a thought in her mind, you too would be amazed. The only time she has ever pointed out something is when she called one of Chloe's trial strollers a 'funny stroller' but that was only because it had a polka dot canopy that stood up high unlike other strollers. The canopy was the only thing that stuck out to her, not the wheelchair part of the stroller. And to put this into perspective for you, she calls any car going in reverse a 'funny car' so really she's not pointing out much.

Like we have said (and have been told) a number of times, children are very resilient in more ways that we can ever imagine. Reth and I have been strong but our girls have been inspiring.

Much love and thanks,

Michelle, Reth, Olivia and Chloe

December 6 - Blythedale - Day 17

After two weeks living on the yellow unit, we completely broke down in front of the administration and said we had enough. We have been somewhat sugarcoating the reality of being here but the truth is that we have been really unhappy and more than a bit disconcerted with several things, but mostly the nursing care on the yellow unit. We still remain very positive about the therapies that Chloe has received and are confident in the team that has been put together for her but when their day is done or the weekends arrive, we have a very different feel for this place.

Our PT had been aware of some of our problems and had brought it to administration. After a 4 page complaint, a meeting with the Patient Care Director and Social Worker, and a pending meeting with the higher administration, we have been moved to a different unit - the green unit which is the unit we had seen on our tour and were initially impressed by. We are now in a room with three other small babies with a nurse who is in the room most of the time. The nurses station is right outside the room and they are easily accessible. There is also continuation of care here so that when a nurse is working a few days in a row, then we will have him/her return to our room.

This has been a good change so far. As soon as we began moving our things, we were immediately greeted by Chloe's nurse, and other unit nurses even came in just to say hello. We were told there are no fruitflies here on this unit, there is a fairly empty refrigerator where we can store food, there is even a LOCKED shower room (oh, if you only knew what we had beforehand). The day and night nurse we had in the first 24 hours of our move seemed to be well beyond competent and we felt more than comfortable leaving Chloe for a dinner out with my family. Yes, this is the first time we have felt that Chloe was safe to leave for a few hours and have some time to enjoy ourselves. As we sat with Olivia and my family over a nice dinner, we didn't worry, we didn't panic, we didn't rush. It was refreshing and way overdue!

We hope we have not spoken too soon about the positive change. One of us will still remain by Chloe's bedside and be with her during therapy but we hope that we can take breaks when there is a need.

Chloe continues to do well. She and Olivia had a nice playdate Friday afternoon to start off our weekend together. My parents were able to pick up Olivia early from school and bring her to the hospital so that I could have some time with her. Olivia was so excited to see Chloe awake and alert. We opened up some playmats on the floor and Olivia read books to her sister, played with her toys, and showered her sister with kisses and hugs. Chloe enjoyed her sister's gentle touches and cooed lots while they played. It was wonderful!

Much love and thanks,

Michelle, Reth, Olivia and Chloe

PS

Our updated address at the hospital:

Chloe Atienza

PATIENT: Green Unit, Room 110

Blythedale Children's Hospital

95 Bradhurst Ave.

Valhalla, NY 10595

December 3 - Blythedale - Day 14

So Reth is back to work and I am here at Blythedale with Chloe.

It has not been the easiest start but we keep chipping away. The past week and a half, Reth has been here to observe and learn many different PT/OT and speech exercises, learn how to feed Chloe and administer her medicine and take care of her GT site. He has been amazing with her and I have watched him move around her new routine with such ease and confidence. He has seen Chloe make lots of baby steps with her teachers and therapists - reaching out a bit more for toys, rolling over slowly, organizing her mouth a bit more with different oral stimulation tools, and even sucking on her therapists finger. Thinking about all these things, they seem so little and trivial but these are actions that we didn't see or saw very little of over the past month and a half.

Chloe is a newborn again. She needs to be cradled and needs lots of head support. She needs to be taught everything. Slowly, slowly she is remembering different actions and movements and has become a bit easier to work with. She is easier to calm when she is moved through different positions and is able to tolerate more and more activities. She has been more alert during the day and restful at night which has made her evaluations and assessments much more successful. Chloe has now been approved for 3 different therapies of 30-45 minute intervals of PT, OT and speech. A feeding therapist will begin with her in the next week or so as well. She also has two sessions of school, one for two and a half hours in the morning and another hour and a half in the afternoon. It's quite a busy day for her!!

It is a very slow process rebuilding and retraining the brain. Each day we see glimpses of what is possible but understand that it will take time. It has been eye opening to think about how many signals the brain needs to send to the rest of the body in order to perform a task. Even just rolling Chloe to her side takes a lot of little pushes and adjustments of her head, her arm, her hip, her leg, her feet. Pat, pat, pat, rock, rock, rock, and a few minutes (not seconds) later she eventually calms. It is indeed easier to do this now than it was just a couple weeks ago but what used to be the simplest of tasks is now hard work for her.

As for me, well, I would be lying if I said things were fine, I would even be lying if I said things were okay. I (we) are hanging in there. It's a big adjustment and there is a lot to learn. Slowly (very slowly), I find people here that I can trust and can talk to about my frustrations, my questions, my goals but this too will take time. It's not easy being away from Reth and Olivia and being far from home but as we watch Chloe trying and pushing to accomplish so much in her jam packed day, we know that as hard as this is on all of us that this will give her the best chance to a brand new start at life.

Much love and thanks,

Michelle, Reth, Olivia and Chloe