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.

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!

One Week Later

This week has been one of ups and downs. We found very little information on WHS and how it will impact Kendall. It is very clear to us that this syndrome is unique for each person, regardless of the chromosomal deletion. We could find a person with the same exact deletion and it could have a completely different effect on Kendall. We also realized that the magnitude of variety is so extreme, that the chance of us finding someone exactly like Kendall is impossible. This Syndrome is so rare that most doctors we talk to or learn about have only seen between 5-10 cases over their 30 years of studying genetics. We attempted to search for other clues by talking to other 4p- parents. We talked to one family in Los Angeles and have emailed a few others. We are trying to look for the best case scenario so that we can start setting some goals for her. Realistically, she is going to be what she is capable of being. So, we have officially moved from "looking for answers" mode to "treatment and monitoring" mode. When there is no cure and no similar case, we have to do the best we can to look forward and give her everything possible to be healthy, happy and loved.

One step in moving toward grasping this condition included taking her to a Neurologist. We found one of the best available in the city and brought her to Children's Memorial this past Wednesday. Our research has shown that the majority of 4p- kids have seizures. Our visit with the doctor was more of an assessment and counseling than anything. Since we have not seen her seize and any medication at this point would just sedate her (leading to more development delays), we have taken their advice to not apply any medications until we actually witness seizure activity. There is a small chance that she will not have seizures and we hope that the odds will be in her favor. Our next visit is with a well known Geneticist tomorrow. We hope to get some answers on how to address other risks, such as kidney problems and heart issues.

Until we see that there are other maintenance measures we can take, our highest priority is to get her as much nutrition as possible. Since her recovery from Rota Virus, she has been eating well and we continue to push her threshold of food intake (both bottle and G-Tube). We have been able to increase her amount to about 30% more than the nutritionist has advised us to feed her. It seems to be helping because she weighed 11 lbs. at the Neurology visit, which was about 10 oz more than what she was 2 weeks prior.

As of this writing, she is doing well, but she as caught a cold from Carsen. We can't seem to get a string of more than 4 days of consistency with her, both with food intake and health. When she's sick or has a cold, she stops eating and her gag reflex gets more sensitive. We do whatever we can to avoid these situations, but nothing seems to work...

More after we talk to the Geneticist.

Kendall at Children's Memorial Hospital

Wolf-Hirshhorn Syndrome

This posting comes as a very difficult one to write. The title of this posting is also known as WHS or 4p-. WHS is an extremely rare chromosomal disorder caused by partial deletion of the short arm ("p") of Chromosome 4. In the case of this syndrome, the amount of genetic material deleted varies widely, causing the symptoms to vary from case to case.

On Thursday April 3rd , Kendall was diagnosed with WHS. Kendall was admitted Wednesday afternoon after having trouble keeping food and fluids down and during her stay, the word came back to us via our pediatrician about her condition. Her stay at the time was diagnosed as Rota Virus, which she must have gotten from Carsen. Carsen had a bad case of this the week prior and lost 20% of his body weight. Since Kendall was already low on the growth and weight curve, we got her in immediately to make sure it didn't become a serious situation. Our routine visit to the hospital turned into our worst nightmare.

Kendall's interest in eating and her ability to keep food down has always been a problem. 3 weeks ago, she got her G-Tube inserted, which now allows us to feed her directly into her stomach. Over the past few weeks, she had been making great strides and was getting upwards of 760 ml's of formula/day when her goal was only 660 ml's. We were starting to get hope that this was just a feeding disorder of some type and all she needed was some therapy to correct the situation. While we were at Lutheran General getting the G-Tube inserted, we asked our GI Dr. to exhaust all possible tests so that we can leave knowing why she is not continuing stable eating and growth patterns. At that time, we agreed to a genetic test, which we believed would be just a routine test that would come back negative like all the rest. We were mistaken. We now have answers to why she has been struggling since she has been born.

Wolf-Hirshhorn Syndrome is the diagnosis. Although it's only been a few days since we found this out, we have learned quite a bit about what to expect for her and for us. The variance of severity is wide and we are hopeful for her future. Gene and chromosome study are new to Cathy and I, but we are learning so much every day about this fantastic science. In Kendall's case, the affected chromosome is #4. Chromosomes are paired and have a short (p) and long (q) arm. Kendall's #4 chromosome has a deletion in the short arm. Each chromosome arm has numerical sequence identifying its specific bands of the arm. The most severe case of WHS occurs when the 4p16.3 band is deleted. People with this band missing have severe mental retardation, limited growth and extreme recognizable physical attributes identifying them as such. Fortunately, Kendall is not missing this band and therefore does not have an extreme case of this disorder. Her chromosomal study identified micro deletion, versus a whole arm. We still have to study what her deletion means and look to find others that have this specific deletion. WHS is a fairly new finding, just over the last 30+ years. This disorder is so rare, that numbers have come back at 1 in 90,000 births have been diagnosed. Our discussion with the Geneticist at St. Alexis stated that it is very possible that there are people walking around that have this, but have never shown symptoms to get it diagnosed. We will continue to search for a case similar to ours that might help us set expectations and find ways to help her now.

We don't know the details of what to expect for Kendall. We do know that she will be delayed developmentally and potentially physically. Most WHS cases involve severe seizures (50-100%), skeletal anomalies (60-70%), heart defects (50%), hearing loss (40%) and much more. We believe that most, if not all of these traits may not be present in her as she has not shown any signs of these and even the Geneticist at Lutheran General said that she doesn't see anything that resembles a genetic problem (prior to the test).

Our current plan is to give her a lot of love and push for only the best care and treatment. We want to find out very quickly whether or not she is at risk for seizures. We also have been advised that filling her weeks with therapy (speech/developmental/occupational/physical/massage) will help her progress more quickly. Additionally, once she is over this crazy virus, we are going to pump her full of calories and food so her brain has the chance to grow to the best of its ability.

We are optimistic, but will prepare ourselves for outcomes that may not be as hopeful.

We want to thank all of you that have been supportive during this time. So many of you have offered to help us in so many ways, including taking Carsen off our hands (which is more than what you could bargain for!).

Thank you again for the support. It means so much to us.

Kendall Update

This past week was another episode of hospital stays and doctor visits. Kendall had a G-Tube inserted on Thursday afternoon and was released from the hospital on Saturday morning. I stayed with her as she recovered from the surgery. The G-Tube is a tube that is used to feed her directly to her stomach. This replaced the NG tube that went down her nose.

After the surgery, she was in a lot of pain and needed some morphine to calm her down. She slept well through the night and woke up in some pain but in a good mood over all. Friday was spent getting her on a pattern that allowed her to take fluids regularly through the tube and adjust to the new way of eating. She moved along well according to the doctors requirements and she was able to leave Saturday morning. She was 10 lbs, 5oz when we were discharged.

So, now the plan is to find a pattern that allows her to maximize her food intake without throwing anything up. The first day back, she did throw up a few ounces, but has been good ever since. It is tough on us as only 2 months ago, she was eating on her own at a level that is more than what she is taking right now. We are baffled at why this is the case and still have some questions to be answered. Every test so far has come back negative. We thought that maybe it was that her system wasn't absorbing the way it should, but the biopsy came back normal. We thought maybe her stomach was too small and the doctor said that the stomach expands according to the amount of food she eats and that it is unlikely that this is a problem. We have a number of follow ups and additional consultations with therapists and specialists and will continue to search for answers. In the mean time, our focus is on providing a positive experience for her at every feeding. The times in the past that were traumatic for her may have given her an aversion to eating and we have to do our best to reverse that negative experience she associates with eating.

On a positive note, she continues to develop and seems to be more active as she takes in more food. She is very alert and engages with us quite a bit more than she has in the past. Her strength has increased and her motor skills are developing by the day. She knows that her hands can grab stuff and loves putting her feet up straight in the air.

She is so amazing and we love the great things she brings to our life. Outside of not wanting to eat, she is the best baby we've ever been around. We still can't get enough of her....

Update

What a crazy few months it has been. Kendall continues to be this amazing child that brings us so much joy. She has progressed with her motor skills and is developing strength in her legs, arms and core. She recently found her hands and watches them for hours on end wondering how she makes those little fingers move. It is very cool.

The down side to the last few months has been her lack of growth. She isn't growing nearly at the rate she is supposed to. At 6 months, she weighed in at 9 lbs, 2 oz. And just last week, 6 weeks later, tipped the scales at a whopping 9 lbs, 12 oz. Only a 10 oz gain in 6 weeks. We were surprised at such a small weight gain because we have been force-feeding her every day, including solids and larger portions. It was so disheartening to see such little progress. We decided that we needed to do something drastic to get to the bottom of this puzzle.

Currently I am writing this from a hospital room at Lutheran General. It all started about 2 weeks ago when Kendall got an upper GI, which came back normal. Cathy then arranged for early intervention, which means that a bunch of people come out to assess Kendall and determine whether she qualifies for help in certain therapeutic areas. The meeting took place 1 week ago today with 7 people coming to the house for about 2 hours. They all agreed (within their respective specialty) that she would need therapy of many kinds to help her catch up to other kids her age. We haven't ruled out some of the more severe issues that she may end up being diagnosed with, but we are certain that most of these potential issues are not part of her problem. It is all stemming from her lack of food intake.

The day after early intervention gave their assessment, Kendall decided that she didn't want to eat and only took in a few ounces over most of the day. Cathy brought her in to the pediatrician and the pediatrician said that we should start performing some tests to start ruling out certain things. From the doctors office, we took her to the hospital and she got a CT Scan of her brain. That came back normal. Cathy then pulled as many strings as possible to get Kendall in to see a neurologist and a GI specialist. Both of those visits happened this past Tuesday. The GI doc said that we need to get a feeding tube put into her and put the order in for this surgery.

So, we brought her to the hospital today believing that she will get an endoscopy and a feeding tube inserted. When we got here, only the endoscopy was scheduled. Our hearts sank and disappointment set in. It's been such a stressful thing trying to get her to eat; even more stressful force feeding a crying baby.

So, I am here at the hospital staying over night with her as they let her recover from the endoscopy, which came out normal. We are told that she will get a tube inserted that will go straight to her stomach from a location right by her belly button. Good chances that she will have this in for over a year, or until she starts eating at the level she is supposed to. This will happen next week hopefully. In the meanwhile, we will continue to feed her what she wants and try to be patient.

Hopefully, the next posting will bring bear great news on her progress and fattening up...

5 months

Kendall's been with us for 5 months now and it is weird to think that she wasn't even around just a few short months ago.

She has been very active these past 2 weeks. It started with her 5 month check up and everything looked good except her weight showed her only gaining 4 oz in the past month. We were very concerned as we have been doing as much as we could to pump her full of food (we later found out that their scale might be wrong). The only item that needed attention was that she was having trouble eating at times and it seemed to be a struggle for her to eat her full amount at the times she should be hungry. The doctor didn't seem concerned since she had been gaining weight, just not at the clip we expected.

Then, just a few days ago she started getting a cough, most likely picked up from Carsen. It got worse and we got really concerned when she started throwing up her food. We instantly brought her into the ER and they admitted her yesterday. She has RSV, which is a virus common to children and dangerous to infants and premature babies. Cathy and I have been taking turns staying at the hospital with her while she gets oxygen and fluids via the IV. She has also been getting her passageways suctioned to allow for her to breathe better. This helps a lot when it is time for her to eat. We plan on staying here as long as we need to. Ironically, my mother has been at the same hospital, 2 floors up recovering from getting a tumor removed from her stomach. I'm hoping 2008 will get better soon!






Kendall continues to be an unbelievably great baby with no fussing and full of smiles. She loves to hang out with us and is just a charm to be with. She still looks young for her age with passer-bys thinking she is just a few weeks old. We love her just the way she is!