For those of you that Follow my postings, I want to introduce you to http://www.wolfhirschhorn.org. I started this new blog just a few shorts days ago and I invite you over to see more about Kendall and about other children with her same condition. If you only want to read about Kendall, you can select her name in the categories drop down and you will only see her postings.
Please drop by and let me know what you think. I hope to make it a place where all of the families can find out more about their children.
Kendall glowing from her new tan on Clearwater Beach
By the pool at the Marriott Suites on Sand Key
Carsen and Kendall by the pool
Kendall riding a toy at a party
Wow, I've been so bad in keeping Kendall's blog updated. This is my first post in almost 6 months and feel quite terrible about it...
Things as always have been a roller coaster and we continue to enjoy the ride. As with all of our new found WHS friends, it's never easy, but we always try our best to take the great out of the situation and see it overtake the rough parts. We've done that well since my last posting.
For starters, Kendall is a new girl these days. She has figured out how to scoot, which complicates things for us, but gives her a sense of motivation. Knowing that she can actually get to something she wants has given her new life. In fact, she has picked up a new emotion that counters the motivation: frustration! When you realize you want something and are used to getting it, frustration sets in when you don't get your way. We all take this for granted as it is a normal transition in development with non WHS kids. Seeing Kendall acquire these new ways to use her brain is great to be a part of.
On the walking front, we're still a ways away from this accomplishment. She is continuing to stand and will hang on to chairs or couches, but only after we prop her up. Actually, we saw her pull herself up into a standing position yesterday for the first time. I don't suspect that she will be doing it on a regular basis yet, but it is a great sign of strength that she hasn't shown in the past.
Another sign of strength is her willingness to crawl. She is starting to crawl more, only because she thinks it's a way to show off. She prefers the scooting way of travel, but will start to crawl to get some attention. She mostly loves watching herself do it in front of the mirror. Scooting can have its downsides since she ends up cleaning the floors everywhere she goes. We're considering strapping a mop to her bottom to help us out a bit. (We tried teaching her to help around the house with the chores- http://www.youtube.com/watch?v=MVqsxgtVklc) She gets around pretty good for the most part.
Our biggest hurdle continues to be her feeding. We've been so focused on her growth in this area and lost sight of one of the key developments with her and that is weight gain. We stopped her night feeds some time ago due her movement in the crib. We quickly moved to working on her oral feeding and she was doing well. However, we were limited to what we could feed her because of her gag reflex. She has a real problem with anything that doesn't easily dissolve in her mouth, or with food that sits in the middle of her tongue. In either of these scenarios, she will get herself into a gagging frenzy followed by stomach contractions. The end result is her losing her lunch and all the effort we put into getting it down. So, we bought a new vitamix blender and made her food, which included mostly vegetables and fruits. Knowing that she was eating healthy, we didn't think too much about her weight gain, or lack thereof. The end result was a loss of 5 pounds in just about a years time (almost 25% of her weight). We were devastated when we found this out. Cathy took her back to the GI doc to find a way to get her back on track. He put Kendall on Peptamen, which is high in calories and full of vitamins. She has now been on this for about 2 months now and we've seen a small uptick in her weight as she has gained about 2 pounds back at about 19.5 pounds.
On the other fronts, she is still not talking too much. She makes a lot of noises and mimics us on occasion. Her health overall is pretty good and we've been able to stay clear of hospitals for a while now. She gets her usual colds like any other kid, but has been healthy these past 9 months or so.
For us, we've been keeping her at home and trying to work at the same time. We've hired a couple part time nanny's to help out on days where she doesn't have therapy. They started last week and so far it has been great. Cathy and I both work in and out of our house, but are always tied to the house to care for Kendall (and Cailen!). Our jobs have been suffering over the past few years, forcing us to make up time in the evening and weekends to make sure we don't get fired... We are really stressing play time and work with Kendall during the nanny time so that she can continue to make further gains. In addition to Kendall, they watch Cailen, who turns one in a few weeks. Cailen is a super baby and loves to play with Kendall. They get along so well and have also been sharing a room since Cailen was born. We were hesitant in putting them together, but it has worked out really well. They both like the company and they have grown a little bond together.
As with all of our friends we've come across with children like Kendall, we still have our tough times. Kendall brings so much joy to our lives and her laughing is so contagious. We've never seen such a happy child and we are thankful for every day she is with us. However, reality sets in on occasion and we struggle with how to deal with her in our life and what it means to the other kids. At times, our son Carsen will be outright mean to Kendall. He sees her as a threat and knows she is different. He turns 4 in June and once said to me that 'Cailen and me are the same and Kendall is different'. It was a peek into the future about how this situation needs to be explained to one of our kids.
Oh yeah, I almost forgot to mention...Last November, we road tripped it to Florida (from Chicago). We hit a wall and decided that a 3 year vacation hiatus was in need of breaking. Starving to get out of the monotony, but the fear of how we will handle 3 kids in car seats for 2400 miles round trip, we just said F*&K it and did it! We feel like we've been tied to the house since Kendall was born in order to deal with her feeding and everything else that goes with her. We broke the routine and enjoyed every minute of the trip. It was the best thing we could have done to get refreshed on life. Kendall enjoyed herself as well and we could see the change in her. We realized that it is not just us that feels the stress of the situation. She felt it as well. But now we know that she too can enjoy a break from the every day.
Enough for now. I have to get on to the other kids blogs...
Wow, what a crazy past couple of weeks. Things have been so up and down starting with Kendall's 2nd birthday party. The crowd was small per our design, with the thought about focusing on her completely and not a monster crowd like we had with Carsen's 2nd birthday party (80 people). Kendall's 1st birthday was mentally rough going and we were able to pass this next milestone with a better understanding of what Kendall's future may hold. Overall, the day went well and we closed it out by having the Lucania kids over for the night.
Kendall has her 2 year review coming up next week. These reviews are conducted every 6 months to assess how well she is progressing in her development. All of her specialists get together to give their synopsis and we all compare the before/after notes to determine what may transpire over the next 6 months. Usually, her illnesses and hospitalizations have set her back but I think that the last 6 months have been solid for her. She will most likely place at a 9 month old for most of her areas except speech. She continues to make gains in her fine motor skills and is getting motivated to grab toys within her reach. She can also hold herself up in a standing position, but cannot get herself into that position. She is not talking, but is mimicking some basic sounds and is making more noises than she did 6 months ago.
Her largest gains that I have seen are in her feeding. This has been a significant area of concern for us since she was born. Her gag reflex is starting to go away and having food in her mouth seems to be a more familiar thing to her. We try very hard not to use her feeding tube if at all possible. Oral feedings are the most important thing for her to master at this stage of her development. We use the tube to supplement her feeding or to feed her when she has no interest in letting us get the spoon near her mouth. Overall, she has been doing great. She still has to eat mostly pureed foods, but we're getting more into the textured foods and hopefully she will continue to understand that food in mouth means that her hunger will go away. She's a long way away from eating a sandwich or picking up food on her own to eat when she is hungry. We continue to make all of her food using our new VITAMIX blender, giving her the chance to taste more.
One other developmental gain that she has made recently has caught our attention. I'm not sure it is something that appears on any evaluation list, but I think she understands the whole pooping in the toilet thing. A few weeks ago, I decided on a whim to put her on the toilet when she was making her grunting sounds. We always know when she is filling her diaper and I don't know why I decided to do sit her on the toilet, but I did. It's been an on and off thing for us to see if she'll poop in the toilet, but as of late I've been putting her there at times when she usually goes, but hadn't shown us the signs we are used to seeing. So, last night right after dinner, I put her on the throne and she made her business! I did it again this morning after breakfast and again after dinner tonight. Both times, she made an attempt to go and made #2! I know that she doesn't have the wherewithal to tell us she needs to go, but the fact that she went when placed there is something that made us so happy. There have been very few signs of her understanding things and to see her act upon sitting on the toilet told us that she really gets it and is continuing to learn. The best part is that she seems to have fun with it and when she is done, she starts clapping!
Well, our house is in baby and kid mode all the time and when things are smooth with Kendall, the house is in a better place. She is digging 'new baby' (Cailen) and likes to play with her. Carsen still likes Cailen better (maybe since she looks so much like him), but in his own way he is working with Kendall and her development. Just the other day, Kendall got to play with his Ironman doll so he could play with one of Kendall's new toys. Kendall didn't care and had fun regardless.
One last note- I found a few connections to other parents with WHS children. We have been somewhat silent lately in our quest to communicate with others in our situation but have read some great stories that we will be following. Here are a few:
I have been thinking lately about a way to help others in similar situations as ours. There are so many diseases and conditions out there that challenge parents and their ability to provide love, care and opportunity for their children. We have lived this roller coaster first hand, and continue to feel the pain and emotion when dealing with Kendall's rare condition. The stress on a family comes in many forms including the financial burden to care for a child with special needs. Healthcare benefits can only do so much, if you have them. Last year alone, we paid over $13,000 out of pocket for Kendall's care which included numerous hospital stays, medical supplies, therapy and so much more. The fountain of paperwork continues to flow every month and there is no end in sight. We're lucky that Kendall's WHS diagnosis is on the mild side (micro-deletion), otherwise the requirements for care would be exponentially higher.
So, in light of our experiences, I was thinking about some way to help others deal with the stress and pain of the hand they were dealt. The answer to part of the problem is to provide financial assistance. I don't believe in donating to a cause bucket, not knowing what happens to my donation. Alternatively, I can make an attempt to determine where the funds go and to have some control over the outcome of the donation result. So, what better way than to create a mechanism to control this??? Well, I have decided to start up a foundation that will provide direct financial help to those individuals in dire need to help their children. I call it the "Kendall Foundation".
All of the details are not quite figured out, but I do know that any and all collected funds will be used to pay services directly for the care of children with Wolf-Hirshhorn Syndrome (WHS). Money will not be given to familes directly, but to the organizations that are required payment for services or supplies for the child's care. I don't plan on this foundation becoming a large entity, but yet a simple way to provide some type of assistance to those that can't give their children all that is possible. WHS is a more recently identified syndrome and is without cure. Since it is a genetic disorder which alters the chromosome make up of those affected, the only thing that can be done is to treat the conditions. Most of the children with WHS face many health hurdles ranging across the heart, kidneys and brain. More can be found be researching WHS or 4p-. Each child is unique, but comes with some similar symptoms. Regardless, the challenges are steep and with state budgets getting cut, programs to assist children are getting removed.
So, the way I plan to kick up this cause is to hold events that bring people together to celebrate friendship and common interests. With so little time on my plate to organize complex events, the activities will be held only a few times/year creating a small amount of funds, but large impact to those that it assists.
I hope to hold the first event in the next few months. More to come so stay posted!
With milestones come certain feelings for us to sort out. Kendall turns two in just a few weeks and her approach to this date come with successes, yet clouded with turmoil and questions yet to be answered.
On the positive side, she continues to make developmental gains. Not too long ago, we were concerned about her not being able to get herself into a sitting position. We were also worried that her ability to make new sounds was coming to an end. In both areas, she has made nice progress. It's second nature for her to move easily between lying, sitting and into the hands/knees position. It's amazing what we take for granted and how we learn to move in certain ways. Watching her therapists work with her gives us a new understanding of the basic movement fundamentals and how muscle groups function together.
With the tubes in her ears, she continues to make more sounds. We like to believe that they are helping her hear more clearly and that she can hear her own voice better. Regardless, she is starting to mimic some of our sounds and voice movements. There are probably a dozen or so sounds that she will copy from us on a regular basis. We have some hopes of her talking, but don't expect that her vocabulary will get beyond just a few words. We can only hope for the best.
On the downside, it appears that Kendall is losing weight. She is making the transition from baby to little girl, but is thinning out and has been for the last month or so. We weren't sure if it was the case until we got her weighed at the doctor when she got her tubes. She was down to 18 lbs from 22 lbs at her peak. She has also been sick these past few days and hasn't been able to keep down food. It wouldn't surprise us if she has lost a few more pounds. Her therapists even noticed that she looks skinny. We're at a loss with what to do to get her to gain some weight. She can only handle so much food and with the night feedings coming to an end, we only have so many options to keep her nutrition up. It's been such a hard thing to manage for us and we feel so bad for her.
It's been some time since I have been able to post to Kendall's blog. Although I really don't have a great excuse, I do have a good one. On March 5th, we added Calien Olivia to the mix and the new addition to the family has been a fun and consuming time for us. Now with 3 kids under 3 years old around the house, things are a little hectic to say the least.
The title of this posting reflects the time frame since we found out about Kendall's diagnosis. It's been just a little over 12 months and just about a year since her early intervention program started. We now have a time segment that we can use to measure her development and progress since she has been receiving all of her therapy. I will get back to her development later in the posting.
The last few months have been interesting. My last post was written from the hospital and when we arrived home on the 4th of March, we were settling in just to go right back to the hospital on the 5th to deliver Cailen. Cathy had a scheduled c-section for the mid day and we were glad that Kendall was home in time for us to get back in for the new baby. Only, 4 weeks later, we ended up in the hospital again to treat another respiratory virus that Kendall had picked up. In fact, it was diagnosed as pneumonia this time around. Not uncommon to us, we gathered a few days worth of goodies and headed to the hospital for another stay. This time, Cathy stayed with Kendall and I stayed home with Cailen and Carsen. There is a silver lining to get the time with the kids without Cathy around since they want more to do with her than they do with me... Regardless, poor Kendall had to go through another round of doctor visits and a stay in the hospital that seem to be tougher for her to take. She is starting to dislike people in hospital attire and would cry at the sight of unknown faces. The schedule for us during this trip had Cathy spending the nights with Kendall and me spending the days at the hospital so Cathy could come home, spend time with Cailen and catch up on sleep. It seemed to work out well. After a few days, Kendall was able to come home. Overall, outside of the danger of her getting extremely sick, the largest impact to her getting sick is the effect on her nutrition. When she goes through these spurts of coughing and breathing difficulties, she usually throws up whatever we have put into her through her feeding tube. She has a hard time keeping any food down and the result ends up being a scare for us as she is not able to carry out her feedings. After this hospital stay, it seemed as if she lost weight and to this day, she doesn't seem to have gained it back. The last doctor visit had her weighing in at just under 20 lbs.
So, in regards to her weight, she does seem to be a thinner kid since she was released from the hospital in April. She looks longer, but we see her weight loss more so now that Cailen is around. Cailen is close to 15 lbs and she is not even 3 months old! They look almost the same size and Kendall is approaching 2 years old. Cathy has done a great job of working on Kendall's nutrition and making all of her food. We even broke down and bought a Vita-mix blender, which runs about $500 after taxes! Supposedly, this thing will puree anything (it better for $500!). So, Cathy is going to try some new stuff and hopefully Kendall will get more calories from the new experiments that Cathy will be jumping into this next week.
We have been giving her less formula over the past month or so because she is so much more active in her crib. Since she has had the feeding tube, she would get between 10-12 ounces of formula while she sleeps which equates to about 1/3 of her daily formula intake. About a month ago, we found her twice wrapped up in the line that runs from the pump to her G-Tube. It's not so bad as long as the tube does not fall out or get disconnected, but we had a scare when the feeding bag line was wrapped around her neck. We started to fear that we would wake up with her strangled by the line and decided to end that form of feeding. So, now she gets about 5oz from when she goes to bed until I go to bed, which is about 2 hours. We try to get as much in her as possible during that short time frame. I then unhook her when I go to sleep. We know for certain that this has clearly affected her diet. We are still looking for ways to replace this intake and to get her back on track.
Additionally, her feeding by mouth has been going better these days. Her oral intake has been one of the main focuses of her development. For the most part, she still doesn't like to put things in her mouth. She has made some strides in the past month and is more open to the idea at dinner time. She likes eating more from Cathy than she does with me. The whole concept of knowing that when you eat, your hunger goes away, is still a foreign idea to Kendall. We hope that one day she will eat on her own and will not need her feeding tube. Personally, I think that she will always need assistance with feeding and it will be up to us to make sure she gets her nutrition.
On the development side, she is starting to do more activities. One item that seems to be clicking for her is the use of her hands. She is more motivated to go grab objects or toys that she sees in her sight. In the past, she wouldn't really focus on anything that is outside of her reach . As of late, she is getting her stimulus from grabbing these objects and reaching to discover what they are. This is a huge gain for her. She is also getting herself into a sitting position and onto all fours. These are both big steps for her in working her way to walk. Cathy and I both still believe that she will walk one day and seeing her progress in these areas gives us hope.
Her speech has only changed in that she makes new noises. She does not say any words and we don't see that happening any time soon, if ever. Unlike our hope that she will walk, we are not clear where her verbal communications will end up. In fact, we got news today that she needs to have tubes put in her ears. Over the last 2 months, her left eardrum burst twice. We have no idea as to why this happened, but she has not been able to clear her ears of fluid and it seems to be a very painful experience for her. The ear, nose and throat doctor decided today that Kendall will get tubes next week and hopefully this will help her hearing. Although we don't expect her to talk at a normal level, it is possible that some of her delay has been due to the fluid in her ears. The doctor said that this fluid causes her to hear as if she is under water. We will soon find out what, if any, gains will occur by her having clear hearing. It's just one more thing...
On a good note, I have become an expert in replacing Kendall's g-tube. A procedure that cost $2200 in January, will now cost us $0 going forward. I have since replaced her tube 3 times and feel very comfortable with the whole process. It's not a pleasant experience, but a necessity for her health and a large savings for us.
Other than all of these new things, she continues to be a great baby and a happy kid. She is always smiling with this funny grin on her face and is delighted to be alive. She laughs all the time and is very ticklish. Carsen loves to use her as his play toy and she enjoys it just as much. It will be fun to see how Cailen fits into the mix as she develops over the next 6 months.
Well, that feeling that we've been here before has crept up on us this past week. Kendall picked up what seemed to be an every day cold on Saturday evening. Things quickly got worse through Sunday and Monday. By Monday night, she was coughing really bad and we feared that she had pneumonia. I took her into the ER Monday night and she was admitted with Bronchialitis. She was tested for RSV, (which hospitalized her last year for 6 days) and for the flu which were both negative. However, her condition was so bad that they needed to admit her. So, we have been here 24 hours and we hope to get home tomorrow before Cathy starts having the new baby. She is due any day now, so we decided to check in for the whole week... We know St. Alexius inside and out and continue to make ourselves at home with every new visit. In fact, we are starting to be on a first name basis with the staff here.
On a more positive note, Kendall had been making great strides in her speech and fine motor skills. She has been making noises that we haven't heard before and she has shown more interest in using her hands with her toys. She is also standing better and bearing weight on her legs. Her therapists believe that the one thing that keeps her back is motivation. Her drive to go after a toy or to get something she wants will push her skills further. At this time, she does not show an interest in doing much on her own.
She has also become an unbelieveably happy baby. She laughes all the time and loves to be tickled. Cathy and I often talk about how she has so much love to give and is truly the happiest baby we've ever seen. We feel so lukcy that she is a part of our life and try to see the light that she sheds on us every day. The trials and tribulations she encounters have slowed in pace and the positive influence she has on our family has exponentially grown over the past few weeks. She gives so much feedback and has nothing but love to share. The challenge we face now is to make sure that we bring in a new child without disrupting the current balance with Kendall and Carsen. I see Alex playing a larger role in our family as she grows to be a young adult. Carsen loves hanging out with her and her presence around the house will be good for everyone as we welcome a new member to the family.