It's been a while since I posted and I aways have the desire to do so, but not so much the time.

Kendall has been doing so much in the past month or so. The year started out with a scare as she woke up on January 2nd with her feeding tube out of her stomach. We immediately had to take her to the ER to get another placed before the hole sealed shut. It was a long process and a few hours later, Cathy and Kendall made it home. Had we gone another few hours, she would have had to go through the surgery again to get it replaced. A scare, but standard maintenance based on what she has already been through...

We ended up firing Kendalls OT (occupational therapist) since she did nothing but make Kendall cry. She was without OT for about 3 months until last week. A referral from our speech therapist came available and the first session seemed to go well and Kendall warmed right up to her. She is still taking therapy 4 times/week and she is making some strides developmentally. She is able to look at things in front of her and automatically go out and grab them. It's taken a while for her to get the hang of this, but she is really doing well at visualizing items and acknowledging their presence.

A much larger accomplishment for her occured in the past few weeks. She loves to stand up and bear weight on her legs. We think the new perspective she is getting is something that is exciting for her. She can't walk or move her legs, but she holds herself up real well. We have been waiting to get approved for a stander for the last 3 months and we just got it in last week. We call it the torture chamber. Carsen even likes to get strapped in because he thinks it's fun. She's been able to use it about 2 times per day until she gets tired standing in it. The concept is to get her bearing more weight on her legs and hips and to be put into the position of standing. So far, it works pretty well, but she has a long way to go before she can stand on her own. She still can't get herself into a sitting position and she surely won't be standing if she can't get herself up.

Outside of the developmental stuff, the real big struggle we continue to have with Kendall is her feeding. She takes the bottle no problem now. That is good in of itself because she can control the intake and it helps her understand the whole eating/hunger thing. She doesn't like much else to go into her mouth unless she is really hungry. The only things she eats are pureed fruits and vegetables and a few small crackers that dissolve in her mouth. Anything that requires a lot of chewing usually gags her and she ends up in a throwing up fit. This area of her development is still so slow and we have to reply on her feeding tube for her to get her nutrition. Cathy has been making all of her food the past 4 weeks or so. She has really taken the initiative to get her all kinds of foods and has learned how to take sweet potatoes and other items like brussel sprouts and turn them into near liquid. Kendall's favorites are Avocado and Sweet Potatoes.

Overall she is so happy and doing well. We've never seen such a Happy baby and we are convinced that she enjoys every day.

Being Thankful

When Kendall was first diagnosed, Cathy and I had a hard time comprehending what was ahead of us. This year has been challenging for us and we have found that we appreciate all the little things much better than we used to. Over the past month, Kendall has made significant strides. We have realized that just the smallest of things make us happy for her and for us. She has clearly made us better people, as we now appreciate what we have in her.

It is Christmas Eve and I was compelled to add a little something out here since she made one more step toward improving her developmental skills. Over the last month, she has found that her hands can actually hold things and she has started grabbing items in front of her. In the past, she would look at them as if they weren't even there.

The picture below shows her holding her bottle. She held on through the whole feeding, but was able to hold it all by herself for just a moment. We got that one on film! Once again, a little step for her, but huge in the grand scheme of things. We relish these moments every chance we can..

Holding her bottle on her own for the first time...

Getting a little tired

A big smile!

The Holidays

It's been a while since our last post on Kendall, and she has been making GREAT strides. It seems that over the past couple of months, she 'woke up', interacting more and more with us each day. She seems very much aware of her environment, and especially whether or not mommy and daddy are near. She's starting to understand that if she cries, someone will come and pick her up. It's wonderful - we joke that now it's like having a 'real' baby! Her smile is the absolute best thing in the world, showing a mouthful of perfect teeth. She also loves her brother to death, following him with her eyes everywhere he goes. It seems that no matter what he does, she's enthralled and always has an ear to ear smile when he's around.

We took the kids downtown again this year for Thanksgiving, and though it was very hectic and a lot of work, it was such a memorable experience. I'm glad we do this every year, and I'm looking forward to adding another Little one for our outing next year. Kendall really took everything in, smiling and cooing at everything.

Christmas is just around the corner, and at this time both Kevin and I can't help but reflect on the last 16 months. So many ups and downs with Kendall, and the months before her diagnosis were so brutal and heartbreaking that I cannot imagine how we even survived - or how Kendall survived. One of our therapists told me that when they first evaluated Kendall earlier this year, they did not think she would make it. She was so frail, malnourished, and sickly. We are thankful each and every day that she is healthy now, and that she is free from many of the debilitating symptoms most kids with WHS suffer from. We are so very lucky for everything she's brought to our lives and for the pure joy she brings to us every day. We really take so much pleasure in the tiniest things, like her reaching out to us to be held. She is so special and innocent, I can't sit and look at her without running over to kiss or hug her. We're looking forward to this Christmas and hope we can really enjoy it this year.

However, with all the stress we have to deal with each and every day, it still dumbfounds us that people magnify little petty issues so much - especially around the holidays. I just can't stomach the drama and insensitivity of people who have no clue what we go through on a daily basis, and who make no effort to try to understand. It's sad and disappointing, but we've accepted we cannot change things and are happy with the amazing people we do have in our lives. We remain grateful to those who have been so supportive to us, and our unconditional love and warmest holiday wishes go out to you!!

Kendall hits 16 months

It's amazing to think that Kendall is already almost 1 1/2 years old. We sometimes joke that we have had a 6 month old for almost a year. Not so much a joke, but a neat adventure for us since she is learning at a very slow pace and we get to enjoy every moment with her.

Over the past few months, we have been pushing all of her doctor visits and tests in to hit the year end deadline. For once the clock strikes 12:01am 1/1/09, we start all over with the health benefits deductible. We maxed out in 2008 some time in April of this year. Everything since then has been free (including formula!).

So, the last round of tests for Kendall were on her Kidneys. We found out in an earlier ultrasound that her right kidney is very small and in her pelvic area, obviously where it is not supposed to be. The final test for her kidneys was completed a few weeks ago and we found out that they seem to be functioning normally. This is great news since most WHS kids have major kidney problems. Actually, we have been somewhat lucky since the extent of her syndrome has basically left her developmentally delayed. We have been void of all the other issues that come with this disorder. So, bottom line on all of the doctor visits this past year is that she is delayed mentally and physically. As we move into 2009, we plan to be on cruise control with her. We know what she faces and we are fortunate that she is most likely in good shape regarding her health. We always need to be aware of seizures and that remains a concern. All else is good with her and she continues to grow and stay plump.

The past 30-45 days have been very good for her. She continues to have therapy 3 (used to be 4) times/week. We fired our OT person since Kendall didn't like her too much. This therapist is the only person that Kendall cried to when she was around. It was somewhat strange since she loves her other therapists. We're still looking for another OT once our early intervention contact gets back from what seems to be a 2 month vacation... So, her last month or so has been somewhat successful. She can now be in a sitting position, but she can't get there herself. She tries with great strain to pull herself up, but just can't do it. This new found strength in her core seems to also be helping her with feeding. She has been consistently been eating during the day by mouth which is a HUGE accomplishment. Our biggest struggle with Kendall has been her aversion to eating. She never seemed to have the concept down that eating will rid her of hunger. We might be turning the corner as she can now take a bottle without doing it in her sleep. With Kendall, we realize that as parents we take for granted that babies need to eat and naturally have an interest in fulfilling hunger. Kendall, now 16 months old may have finally figured it out. We still struggle with her eating solids, using a sippy cup or using nipples other than the ones that she used while in the hospital. She is starting to enjoy eating soft baby food, but will most likely gag or vomit if she eats anything with texture. On occasion, we can give her those little stars that dissolve in her mouth. She does ok with them as long as they don't land on her tongue. It's a very slow process and it requires that we be patient (Cathy is much more patient than I am) and work with her to start enjoying her foods. We have to give much of the credit to her speech therapist (Holly). She has been tremendous and is genuinely working hard to help Kendall progress. We can't be happier with having her be a part of Kendall's life.

On the development front, she is also making some good strides. In the past few weeks, she has been grabbing items in her reach with both hands. This has been an area that we haven't understood much. In the past, she will not reach for anything in her reach or even seem like she can see it. After having her eyes checked, we know that she can see and should be able to notice items in front of her. The whole reaching and grabbing is starting to come around, but is not a natural tendency for her. She is also starting to put weight on her legs, only with assistance. She is far from walking and still has a way to go with crawling. Her physical development is also way behind, but the good news is that she is developing in the order she should be. In other words, she is progressing and doing the things that she should be doing in the order for which it is expected. All of our experts tell us that if she was doing things OUT of order, there would be a problem. They all believe that she will walk one day; we just don't know when.

As always, each day is a new day for us as we take them one at a time. We enjoy her so much and she is probably the happiest baby we've ever seen. It's her smile that keeps us going during the rough times with her...

Kendall getting her Kidney scan 11/14/08

Kendall is the most peaceful sleeper...



Halloween

Halloween

Happy Birthday

Reality is a part of life, which is sometimes very painful. Our reality has been a hard pill to swallow at times and today was one of those times. Kendall's 1 year birthday was celebrated today. Her real date was back on 7/18, but we pushed her out so that Cathy's friend Dawn could be here and so that we had some time to recover from Carsen's extravaganza.

It was another typical O'Brien/Rojek event with food, drinks and tons of laughter. The Rojek clan (Cathy's family) can always be counted on for joyous times and a continuous flow of chuckles and LOL's. Nothing different with this party, except the purpose of the event. It was Kendall's day to take in the 12 month milestone for which she had worked so hard to get to. It hasn't been an easy trip for any of us and we can now celebrate her 1 year passing and look towards the pursuit of 24 months.

Only, our reality set in when it was time to sing the song we have all sang a million times before. "Happy Birthday to you, happy birthday to you...happy birthday dear (Kendall)...happy birthday to you!" A usual frame of joy for those kids and parents that get to see their child dig into the cake for the first time. A one time adventure into a sugar coated demolition derby that is more fun for the audience than the kid themselves. A moment where mom and dad actually laugh at the mess that was made in hopes that there is something left for the party goers to eat. Our reality of this experience left us with a large void. You see, as much as we love Kendall and are so lucky to have her a part of our life, we still struggle with the things that she misses out on. Being optimistic and positive is always the best answer, but it is so hard not to feel the pain of events like these because they are not what we expect for her. On the surface we are happy about the day and love spending time with the family. Deep down, we are confused and hurting for her and for us.

Her birthday moment was left empty for everyone. I could see that during her song, something was turning in her head. She wasn't sure what was happening, but knew that her environment was different from what it normally is on a typical Friday evening. The beautiful cake in front of her was sitting there ready to be pounced on, but was left just as pristine as it was when it left the bakery. With some help, Kendall got a small taste of the creamy flower that sat atop the 3 story gem of a cake. 3 small finger tip tastes. Not too much, for fear of the new always upsets her taste buds and gag reflex. Just enough to make sure that she got to explore the sugar, but not too much to ruin the taste test. Then it was over.

Carsen was a good brother and found a way to be a part of the gift opening. He cornered the market on the attention available to be given from the crowd and Kendall moved on to her nightly routine to make sure that she gets enough fluids and calories for the day. Lately she has been throwing up quite a bit and our efforts to get her moving towards solids have been going by the way side. We take one step forward and quickly take one step backward. Very little progress on the eating front requires that we stick to a schedule so that we can get her the nutrition she requires.

For those of you that have shared with me your interest in reading this blog, I thank you for following our lives. It means a lot to us to hear that there are people out there that want to hear her story. I apologize for the somber mood of this posting as it comes at a time where the sheer reality of what Kendall is missing sets in. We are saddened that she had no idea what was happening today and that a crowd of people cheered her on during her special moment. In her moment of joy, she stood glassy eyed and transparent. We wanted her to share in the love around her and to be happy for her great achievement. Today that did not happen.

We move on knowing that she is happy in her own little way and the best we can do is to take every day as it comes watching and hoping that she can enjoy the events that lie ahead.

Stuff...

Kendall had a cold this week and when she is sick, she has a tough time handling food, sleep or anything else for that matter. We have to keep her off solids almost completely as her coughing and gagging becomes too much for her with any texture in her mouth. The good news is that she has been taking more of her formula by mouth versus through the feeding tube. She's not too happy about it, but she seems to be accepting the bottle when she is conscious versus only when she is falling asleep. We're working hard on getting her to understand that being hungry can be quenched by eating solids or taking a bottle. Once she gets this concept, her wanting more food will be a natural occurrence and we can start weaning her off the feeding tube. Until then, we are working on only using the feeding tube while she is being fed through her mouth so that she associates the feeling of being full with eating and swallowing.

She has also taken a liking to drinking out of a cup. At the one year mark, she should be taking a sippy cup by herself, but we're happy she is grabbing the concept of drinking from a glass.

She is still way behind developmentally. We're working on her sitting and balancing on her own, applying open hand pressure to items, holding her own weight either by hand or legs, and so much more. Her 4 therapy sessions/week give her so many tasks to work on that it is nearly impossible for us to keep up with her activities. Her scheduled homework has to be worked on after her food has settled and before her next meal. These time slots are short windows of time and we are trying to take advantage of this every chance we can get. Overall, we are very happy with her therapists. They have become a part of our life and have taking a liking to Kendall. They really seem to care about her and have been going beyond the 1 hour slot they are with us each week to make it a more positive experience for all of us.

She loves to rest on her stomach

Her bumbo seat makes her tired

Cathy and Kendall at Brookfield Zoo earlier this summer

She loves to look at things. We always wonder what she is thinking...

The little gains

We take for granted what it is that babies do as they develop through their first few years. Although Kendall is slow to arrive at those milestones that seemed so natural for Carsen to achieve, we find ourselves celebrating every little achievement. Growing from just a few cells to be able to do what we all do day in and day out is a miracle in and of itself. The human body is so complex and one tiny change in the genesis of life can alter every simple developmental goal, as we are finding out with Kendall. Although she is slow to reach these milestones, she continues to make progress. Just in the past few weeks, she has mastered grabbing her legs and turning over from front to back. She also grabs at items in front of her as she decides they are worth grabbing. She has also become more aware of her mouth and has taken to the bottle more consistently, but only as she is falling asleep.

The challenges are presented to us as a new mountain we need to climb every day. We hope that she can make strides more quickly over the next few months. Carsen is dying to play with her and it's tough for us to sit and watch him take her hand and try to get her to hold his trains or toys. He tries so hard to get her to interact with him. It's sad in some ways, but also very satisfying to see how much he loves her. She will always have a big brother that will look out for her...

On another note, today we met with the Kidney doctor and Kendall will need to go through a few more tests to determine the level of function in her kidneys and whether or not there is reflux occurring. One test will be very invasive and hopefully she will not remember it. The other should be fairly smooth. Our hope is that both kidneys are functioning well and that our only action will be to keep an eye out for any change of signs pointing to kidney problems. We are hopeful that everything will test out as normal as possible. We will know more over the next few months.

Kendall didn't take too kind to the cold water at the pool...

Carsen loves his little sister.