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.

1 Year Old Today

Today, Kendall turned one, even though it seems as if she has been with us for so much longer than 365 days.

We didn't really have a plan for today, as it has been a rough accepting what she has gone through so far in her short life. Our intentions were to have a small little celebration for her with some cake and a few presents, but she hasn't fully migrated to food yet and she still has a tough time with anything solid. Her gag reflex is so strong and anything on her tongue may trigger a vomiting episode. So, we picked up a little piece of cake and figured we would let her give it a try by gumming a few bites and let her enjoy the moment. There's really not much she can eat with no teeth.

Well, at least that was the plan...

Her day was overshadowed by yet another trip to the hospital. Carsen has been running a fever all week, ranging from 101-103.5. A few trips to the doctor and another few to the hospital to run tests ended up with us taking him to the hospital again today for a kidney ultrasound. A urinalysis taken earlier in the week showed a staff infection and our doctor recommended that we get him in ASAP to get this ultrasound completed to determine why this was happening.

Back in April, when Kendall was diagnosed with WHS, our doctor ordered a kidney ultrasound due to the typical kidney issues that most kids have with this syndrome. It's been so busy, we hadn't yet gotten around to bringing her in for this ultrasound and I decided that since we were at the hospital doing this same exact thing for Carsen, we might as well get hers done at the same time. It worked out well, because we were able to do them back to back. While Carsen was sent up to get an additional test, I stayed with Kendall for her kidney ultrasound and the initial results were somewhat shocking. The tech that conducted the ultrasound had some difficulty finding her right kidney. After reviewing her complete abdomen, he found it in her pelvic area. The left kidney was in the correct spot, but the tech was concerned about his findings and escalated the pictures to the radiologist. After waiting a while, he released us and told us to get the results from our doctor. Cathy and I are obviously concerned about this and have no idea what this could mean for Kendall. We figured that there may be some additional issues given her syndrome, but had no idea that one of her vital organs was misplaced.

On the upside, we expected her weight to be in the 16 pound range at 1 year and she is closer to 18 pounds. We have been less concerned about her food intake these days and have become more focused on her development. She has been showing signs of improvement by rolling over from her front to back and reaching for items within her sight. She still has so far to go and with the help of her 4 hours/week of therapy, we hope that she will start showing quicker gains.

Kendall has also adopted well to her new headgear. Her 'hat' as I call it, will give her head a more round shape over the next few months. Her tendency to favor her left side has given her a flat spot on the back left side of her head, pushing forward her ear and jaw. Her hat will correct the shape and hopefully she will be out of it by the end of the year. The picture below is her taking a nap today on our way to get her hat adjusted, which we need to do once every 2 weeks. Cathy did the wonderful decorating job.

Kendall at 11 months

Well, Kendall is coming along well in a few departments. The feeding tube has given us a great opportunity to feed her at all times and to make sure she is getting enough nutrition. The result over the past few months has been beyond our expectation. Our goal was to get her to at least 16 lbs by her 1 year birthday. As of the other day (not quite 11 months), she is near 17 lbs. Most of this weight gain is attributed to the overnight feedings she gets. 1/3 of her formula intake is overnight while she sleeps.

We still have issues with her taking solids. With no teeth yet, she is still eating rice cereal, but doesn't really like to eat it. She starting to chew but prefers to do nothing versus actually taking food. We've been working on eating skills by trying to keep something in her mouth at all times, but since her gag reflex is so strong, she ends up throwing up about 2-3 times/day still. It's very frustrating...

She's really pudgy and we're almost thinking that she is gaining too much weight. She's starting to get rolls and has a triple chin going. She looks great and is starting to approach the bottom of the growth curve. We're hoping that her weight gain is in line with her height and we'll find out more at her 1 year check up.

Her progress on the development front is another story. She has therapy 3 times/week to address her speech, development and physical advancement. She is still way behind and can't sit or roll on her own. She is starting to babble new sounds and just recently started razzing, which is a big breakthrough for her. We're also working on her hand-eye coordination. She is starting to grab and hit objects in front of her but is not doing it very consciously. Overall, she's doing OK, but it will be a long road.

All in all, we're happy with the direction she's taking and it is a day by day thing for her. With her weight gain up, we're able to do more as a family. Her tight schedule for feeding was limiting our ability to do stuff with her outside of the house. Even though the feeding pump is mobile, we had to make sure that her food intake was maximized, meaning that we always had to be around the house and had to keep her steady after her feeds so that she kept her food down.

Our Findings

This blog goes out to Doug, who asked me the other day where my update was and continued to prod me for more information. Thanks for being informed Doug!

We have moved from finding out what's going on with this WHS stuff to dealing with it and keeping an eye for certain situations. We were keeping up with a very active WHS support group but found that to be a bit depressing. At this stage of her life, given the situation at hand, we feel somewhat fortunate. The majority of the children affected by WHS have very severe issues that are nothing short of heart surgery and a myriad of other problems like prolonged seizures and all kinds of ER visits. For the most part, Kendall is a healthy girl with many needs. We are so thankful for this.

A few days after our visit to Children's Memorial Hospital, we saw a Geneticist. Our expectations for this visit were to really get a handle on what we should expect for Kendall. The answers we got were empty. The only thing that we realized was that she is a unique person and her condition will be completely different than any other WHS case. To Gene Specialists, we are research and cases. Very few of these people have come across WHS children and their research is about as good as ours. We get paperwork on other cases that show what symptoms and problems they had and unfortunately our case will be completely different. We are now officially a case to keep an eye on and maybe we will be hope for the next family like ours that comes across this syndrome. With all of the research and case comparisons we have conducted, it looks like the constant with all of these children is mental retardation. The geneticist feels that we have a lot to be hopeful for, but her best case guess is if Kendall can function at an IQ above 80 then we are ahead of the pack. History tells us that Kendall will have special needs with her intellect and most likely physically. Each day is a new day for us and all we can do is wait.

In the meantime, we have engaged therapy for her on a weekly basis. Currently, speech and developmental therapy have been in full swing, with physical therapy not far behind. We have been accepted into an early intervention program that gives us resources for her development. It's been great, but it also gives us a view of where our tax money goes. We have been looking for additional assistance to help offset the medical expenses and found that if you make money over a certain threshold, you don't qualify and end up having to pay for everything. In situations like this, it would be helpful to be a free loader without a job so that you get the full opportunity to get the benefits. It's funny how the system works. We have given so much into the tax system, but don't get to use the money. Instead the money we give goes to those that take advantage of the system. Obviously, I have become very opinionated about this situation...

Well, back to Kendall... Our main focus with her right now is weight gain. With her feeding tube in, we have been trying to find the maximum feeding capacity for her. It's taken a while, but we have found a good pattern that allows for her to gain weight and start catching up. As long as she stays healthy and isn't sick, she usually does pretty well. As of today, she is about 12 1/2 pounds. This is great since she was only about 10 pounds at 8 months. She's gained over 2 pounds in the past 5 weeks. This is her largest growth spurt yet. Our goal is to get her to at least 16 pounds by her 1st birthday. If we can do this, it will be a large accomplishment for her. If she can keep up this pace, she should get there. Either way, she is far below the 50 percentile curve. She should be about 18 pounds at this age. We'll get there!

She gives us so much joy. She is learning more every day and is so pleasant to be with.

We picked up this bike trailer a few weeks ago and took her and Carsen on her first bike ride. She had so much fun that she fell asleep!