But she doesn't *look* disabled...

I have to admit, I'm hijacking the topic of this post from Stark Raving Mad Mommy, whose blog link you can find in the left sidebar. She recently wrote a post about people thinking her son, Little Dude, didn't have autism even after being diagnosed because he looks so "normal". Seriously, we get this all the time. All. The. Time. I don't really go into depth about Kenzie's disabilites on here, mainly because I don't want to write it, and you don't want to read it. But let me sure to not romanticize what things are really like. You're right - if you were to take a quick glance at Kenzie, she doesn't "look" disabled. But, look a little closer. Off the cuff, you don't see the (former) hole where the roof of her mouth should be. You don't see the hole in between the top two chambers of her heart. Unless I show you, you don't see the port that sits on her belly so I can feed her. You probably missed the fact that the space between her eyes is really flat. Or that her ears are slightly lower set than the average bear. Or that her ear canals are so small, it makes looking in her ears really difficult. Or that her baby teeth are coming in pretty crooked because of her (former) hole where the roof of her mouth should be. You probably missed the fact that her thumbs look a little funny, even though you couldn't put your finger on it. You definitely weren't paying attention when she didn't say a single word while you were visiting, or didn't wave bye-bye to you when you left, or didn't crawl or walk to you. You were at home when I sat on the floor with her for over 45 minutes for each feeding, trying to keep her still so she doesn't throw up everywhere because of her awful reflux. You were watching TV while Jason was on the phone with our insurance company, arguing for another RSV shot to get her through April. You missed how the only pharmacy who carries her very special formula is over 30 minutes away from our house. You missed the countless doctors appointments, or the revolving door of therapists who show up at my house several times a month. I realize that everyone who loves and cares about Kenzie wants her to be normal. I want her to be normal, too. But the fact is, she just isn't. We had her tested - twice. I wish it weren't true, but it is. She will eat, crawl, and walk when she's good and ready. It's my job as her mom to love her, support her, challenge her, and teach her that she can do anything she sets her mind to.....46 chromosomes or not. :)

It's over!

Well, the big day has come and gone - Kenzie's cleft palate repair surgery is finally over! The surgery took place on Monday, March 7 so it's been a few weeks now and the recovery process seems to be going according to plan.

To say I was anxious about this surgery is a complete understatement. I think every parent experiences some apprehension about their child "going under", but ours was intensified because of past experiences.

Flashback : February 2010. Kenzie is barely 4 months old, barely 5 pounds, and still in the NICU. Because of her prematurity, combined with the cleft palate and the hole in her heart, eating from a bottle was never easy. If she wasn't choking on the milk, she was wearing herself out just by trying. We tried for WEEKS to get her to learn and get better, but she simply never did. Finally, the neonatologist advised us that if we ever wanted to get her home, we needed to have a g-tube placed. One long soul-searching weekend later, we agreed.

A week later, we walked with the nurses to the drop-off point and kissed our baby, in an incubator, good-bye. An hour later the surgeon comes out to tell us everything was done and over and we could go back up to the NICU to see her. What a shock when we get there ; she is still on the ventilator, but after a little bit seems to start waking up. When she did this, her heartrate was quite elevated so the nurse practitioner decided to give her some morphine for the pain. Big mistake. Huge. Epic. Kenzie, in medical terms, was "snowed". She completely stopped breathing on her own. She had to remain on the ventilator for almost 14 hours, at 80% oxygen just to keep her sats in the low 90s. She didn't move. Flinch. Twitch. She was completely motionless this entire time. They were checking blood gasses every 45 minutes or so. The above-mentioned nurse practitioner stayed at Kenzie's bedside for most of the night, just watching her vitals along with us. You know it's never good when they stay with you. Jason and I sat by her the whole time, as did my mom (you also know it's not good when they break the rules and let more than 2 people stay). From 6 pm to 6 am, we just sat and waited for her to wake up. Praying that she would just wake up. Obviously, around 6:30 am the next morning she started coming to and was on a cannula in a few hours, and back on room air by the end of the day. But holy cow.....what a long night.

Since that was our only surgical experience with her, imagine our concern about this one. We had no clue how she was going to handle the pain medications they were going to give her. She has had ear tubes and a bronchoscope done, so I wasn't as concerned about the anesthesia part as I was about the narcotics.

Thankfully, Kenzie was in a much better position for this surgery than she was the g-tube. With the g-tube, she was barely 5 pounds, 4 months old, had a 6 mm size hole in her heart, and was being treated for pulmonary hypertension. This time, she was 22+ pounds, 17 months old, no pulmonary hypertension, and at last check the hole in her heart is down to less than 1 mm. Things were quite different!

The first night post-op was a long one. She had so many medicines running through her that while she was sleeping, her whole body just twitched like an addict. Slowly but surely, the past two weeks have shown remarkable recovery. She's getting back to her old self, and the inside of her mouth appears to be healing nicely (at least to the untrained eye). She wants NOTHING to do with her bottle though, and so I'm thankful to have the g-tube as backup. We go back for a post-op visit on April 14, and we'll get medical clearance then to resume her Early Intervention services. We're anxious to start work with her speech therapist on feeding normally. Obviously we want to be aggressive and get her off the feeding tube, but we want to be cautious and not create any oral aversions either.

Everything else in the Fisher household is about the same. I just completed Phase 1 of a HUGE project with my job, and Jason is busy ruling the world of marketing. We both have a few weeks of business travel ahead of us, but then things should settle down and we can get back into our normal routine.

Sorry I don't have any pictures....I am in Nebraska on business now and didn't bring the camera with me!

Christmas, New Years, and Kenzie

Hello all!


This post is a little late....but better late than never, right?


This Christmas season was so much better than the last. Having Kenzie home with us was such a blessing, as compared to being in the NICU. After our return from Birmingham, we took her to Bellingrath Gardens Christmas in Lights. She was amazed at all the Christmas Lights! It would have gone better had I not had a complete meltdown about halfway through because it was very crowded, cold, and plants! I seriously can't believe I took my asthmatic child to a garden in 48 degree weather surrounded by plants that she may or may not be allergic to. Brilliant. Of course, everything turned out just fine and I worried over nothing.


A few days before Christmas, we went over to my parents house for our annual viewing of "Christmas Vacation". Some family friends come over, we exchange presents, stuff our faces, and watch the movie. We've done this for as long as I can remember, and it's one of my fondest Christmas memories. Because we are still skiddish about taking Kenzie out in public (see above), my dad went above and beyond - purchasing a Santa outfit so we could have pictures of Kenzie and Santa together.



Christmas Day was exciting - we woke Kenzie up to open presents, then get dressed for my family to come over and visit. More presents, food,and naptime followed. Kenzie has been teething for some time now, and the tooth finally broke the gum on this day so she was pretty fussy for a while (one of her top teeth finally came in). A dose of motrin and some orajel later, she was back to new. I think she's gotten every Fisher-Price toy known to man.


Unfortunately, we were not able to make to the Iowa family celebration this year....but hopefully we will get up there this Spring to visit Jason's side of the family.



New Years was uneventful, just the way we like it.


Kenzie is growing by leaps and bounds! She weighed 21 pounds, 11.5 ounces last night. On the suggestion of our PT, we took her to an orthopedic to see if he thought she needed braces on her ankles for stregth (he didn't). He did say that he thought she was "pudgy" and that her soft tissue / hard tissue ratio was out of balance. HA! That's a first. So, we called the nutrionist and got the go-ahead to start weaning her off nighttime feeds. She had been on continuous feeds since she came home from the NICU in February, but we had finally gotten the amount to a reasonable level where we just get up and bolus her at 2 am through her tube. Now, we are weaning that amount down as well and should be OVER IT in about 10-12 days. YAY!!! I can't remember what it is like to sleep the entire night. I've been getting up since she was born, either to pump (while she was in the NICU) or start / end the continuous feeds. This is quite the milestone for us!


Developmentally, we are working on getting her to put more weight on her feet. She doesn't make any attempt to pull up / stand up yet, so we're doing everything we can to encourage that. We rearranged some things in our house to be able to devote one whole room to her toys and development - KenzieLand! I'll have to take some pictures and post them once the room is complete.


I hope everyone had a wonderful holiday season!





(teething meltdown)
playing with rainfall rattle from Discovery Toys

Kenzie and Santa

Jason and K at Christmas in Lights

Kenzie Update

Hey all!

I haven't posted an update on Kenzie in a while, so what better time than now? I'll get back to the #reverb10 project shortly.

As I had posted many times, Kenzie's cleft palate surgery was scheduled to take place on November 12. Unfortunately, this did not happen like we expected.

Jason, myself, my parents, and Jason's mom (who, bless her heart, drove for 17 hours to be there) were all in the waiting room after handing Kenzie off to the doctors. Our ENT came out and said her eartube placement had gone well,and that the plastic surgeon was getting ready to start the cleft procedure.

About 10 minutes later, the ENT comes back out to us saying the surgery was a no-go. They tried to put a breathing tube in, and the size they expected to use wasn't going down. They had to go 2 sizes smaller than anticipated, and this made the plastic surgeon uncomfortable. He told us that cleft surgeries often have some airway swelling....and since it appeared as though her airway was already swollen, that we should be conservative and not move forward with the procedure at this time.

Subglottic stenosis was our "rule-out" diagnosis. They explained that oftentimes, babies who were on a ventilator can develop scar tissue in their trachea which will make the airway more narrow than normal. Treatment options vary depending on the severity; a laser procedure can be performed to "zap" the scar tissue, a dialation procedure can be done, or worst case scenario a tracheal resection can be done. The plastic surgeon advised that he wouldn't attempt her cleft palate repair again until we figured out what was going on.

This was a mixed bag of emotions for us : on the one hand, we felt pretty confident that we knew what was causing this funny sound Kenzie makes when she breathes. On the other, we had totally psyched ourselves up for this surgery and then it didn't happen.

The doctor kept us overnight just to monitor Kenzie's oxygen saturation levels, which always stayed above 90% (which is fine). We came home the next day, and have been working with the pulmonologist to get some tests scheduled.

We just returned from a visit to Birmingham's Children's Hospital for Kenzie to have a bronchoscopy performed. This procedure involved an ENT and a Pulmonologist sending a tiny camera down her trachea into her lungs to see how things look in there.

The results of this were even better than we could have hoped for : She doesn't have subglottic stenosis! The ENT did his part first (upper airway) and came and showed us some interesting images of her trachea. Nice, healthy, and pink! Vocal cords looked great. There were two very small cysts right beneath her vocal cords, but they were so small that they were not obstructing her airway at all! Therefore, no medical intervention needed! WHEW!!

The pulmonologist came by and said that her lungs looked pretty good as well. She does show some evidence of asthma due to the fact that the tissues in her lungs were more red than pink. She also showed evidence of some malacia, which is basically an immaturity of the lungs. None of these diagnoses were surprising, as we are already treating her for asthma with twice-daily nebulizer breathing treatments. There's nothing we can do for the malacia other than let her continue to get big and grow-up. Both the ENT and the pulmonologist cleared us for her cleft repair, which we hope to get scheduled for early 2011.

We stayed the night again (probably not necessary, but they were being cautious) and after a long drive home poor baby fell asleep at 6:45 pm and didn't wake up until 6 am this morning. She has a little bit of a cough, likely due to the irritation of having tubes crammed down her throat. Other than that, she is back to normal and we are all anxiously awaiting the Christmas holiday!

This time last year, we were still in the NICU preparing for Christmas in the hospital. I was a cranky soul last year, and totally bitter that her first Christmas was going to be spent in the hospital. So this year, we are really savoring the fact that she is here with us and in relatively good health.

As for her statistics : She is almost 20 pounds! We cannot believe it. She is in a size 4 diaper, although they are a little big. She is in 12 month clothing (at least), and I often have to get 18 month sizes if it looks a little narrow. I never thought I would say I have such a big girl!

Developmentally, she is hanging in there. Still not crawling yet, but is doing this very interesting "crab walk" where she lays on her back, puts her feet down and pushes her booty up in the air, and scoots around like that. Our PT was not impressed. :) Speech is still behind as far as her making "words", but she does make lots of sounds and is VERY vocal. Occupationally, she is doing very well. Her fine motor skills have improved tremendously and we are very pleased with her progress in this area. Cognitively, she is making progres as well. If we ask her, "where is the tree?", she will look over to our Christmas tree and she knows how to give high-five (which is the cutest thing in the world). She plays peek-a-boo with us, and does some other things like help us turn off her swing. We are so proud of her!

Here are a few recent pictures of her and us :

Guest blogger Jason!

My Daughter’s Advocate
Happy Holidays! This is Jason…your backup blogger. For those expecting your regular author, she’ll be back again soon. But I’ve been wanting to write a column for a while, so this seems like as good a time as any to introduce myself and to tell you some of the things I think about every day. First, a little background…

I’ve spent my entire professional career in philanthropic fundraising, almost all of it in higher education. I’ve helped to craft messages, run campaigns, offer advice and counsel, and solicit funds for good causes. In the beginning I had some understandable hesitation to ask people for money (as most young fundraisers do), but soon enough that uncomfortable feeling went away with proper training and development. I became good at building rapport, using persuasion to make my case, and finding the nuances within asking. In the end, fundraising was a career- I enjoyed it and was good at it.

Contrary to what some people believe, I think giving is both instinctual and a learned behavior. Our deepest passions cause us to spring into action and sacrifice the most, but even those causes that are not closest to our heart can be put higher on our philanthropic priority list with the right education and cultivation. When it comes to my career, I’ve learned how to educate constituents and make a case for support. When it comes to my daughter, there is no learning necessary.

My passions for fundraising and organizational support have never been stirred more than they are today. Despite never having personally met any of the folks at the Chromosome 18 Registry and Research Society (Kenzie was just diagnosed last January), I feel the need to find ways to help fund their work. Obviously, the Fisher family has a vested interest in their research and support. I’ve read all the research papers and keep up with the latest information. With a non-science background (business and public service), the medical terminology can be a little challenging at times. I’ve found Genetics for Dummies to be helpful in deciphering the lingo. Yet, there is something at our core as compassionate people that spur us to give our time and resources even when we know we’ll never fully understand the issue. It’s simply the quest to make a difference.

Think about this for a second. Chromosome 18 is the only group, to my knowledge, in the world that is exclusively focused on C18 abnormalities. I signed Kenzie up for the research program at the Chromosome 18 Society a few months back. They told me our ID number over the phone- #239. What is stunning is that I believe this project has been going on for years! The average person I talk with just can’t believe it’s that rare. To be clear, 1 in 40,000 still produces a significant number of 18q- babies every year. But the ID number given to Kenzie told me something else- that the word needs to get out and the funding needs to be available to help these other families struggling to understand why their child isn’t progressing like other children. Having a support group and a network of families that have experienced what you’re about ready to go through is a powerful tool in managing grief and anxiety. Just ask the Fishers…we know. Yet, most people have never even heard of genetic abnormalities for the 18th chromosome. That’s why the Registry and Research group is so important to support. Try Google-searching distal 18q- or another of the “syndromes” of C18. The first entry that comes up (and usually the first several) is from the Chromosome 18 Registry and Research website. When they’re the only group focused exclusively on researching the medical condition your baby has, you become pretty darn motivated and invested.

I’ve only been exposed to a handful of other C18 families, but every single one of them has done something to benefit Chromosome 18. One family creatively built a scarecrow for a Halloween contest, complete with the names of children afflicted with these conditions. Another family sold Yankee Candles and solicited via Facebook to build interest, resulting in a nice check to the Registry. In each case, these families made it a priority to give because it’s their passion. It goes without saying that we C18 parents are a motivated bunch. Our strength isn’t in our numbers, it’s in our enthusiasm.

Part of the challenge in having a child with such a rare condition is that most of the funding for research goes to the more sizeable medical conditions that affect a larger percentage of the population. That’s certainly understandable and makes complete sense. Who wouldn’t want to cure diabetes, breast cancer, or cystic fibrosis? I know at least one person affected by each and will be glad to hear the news someday that treatment options have rendered them either cured or a chronic condition. But there is also a challenge for the small non-profit whose purpose is focused on a disease or “syndrome” nobody has heard of. In the world of fundraising and grants, the squeaky wheel often gets the grease. While that is an inconvenient truth about my daughter’s condition, it doesn’t have to be an albatross for the organizations that support her. Enter the motivated parent.

I’m not ashamed to ask for money provided the cause is right. In fact, I relish the chance to do so and sit around thinking up ways to do my part. My wife and I are our daughter’s best advocates. She needs a tremendous amount of help to reach her potential. Like all parents with a special needs child, we’ve become medical project managers focused on finding the best doctors and getting her the best outcomes. Her progress thus far has been the result of a mixture of good fortune and good people. We rely on a lot of love in our house to offset the sometimes overwhelming anxiety and frustration that comes along with Kenzie’s various medical conditions. Helping organizations that help Kenzie releases some of the stress that comes along with the daily grind. In that regard, I can look ahead with much more confidence and hope. And most importantly, it makes me feel like I’ve maintained some measure of control in an otherwise uncontrollable situation.

From a practical perspective, medical science also has a role to play in her future. Today’s technology was no accident. It was the product of people constantly pushing the envelope- a healthy, insatiable appetite for something better than yesterday. That type of progress isn’t free. And with a 30% increase in the number of registered non-profits in the last 15 years, the competition for the charitable dollar has never been higher. Governments have a role to play in funding, but passionate people will make the difference in how we move forward in overcoming these challenges- people like the C18 families who would do anything for their child.

#reverb10 / December 11 and 12

December 11 : What are 11 things your life doesn't need in 2011? How will you go about eliminating them? How will getting rid of these 11 things change your life?

Answer : I want to get rid of : self-pity, guilt, anger, bitterness, entitlement, depression, anxiety, panic, fear, OCD,and Red Bull.

How will I go about eliminating them? Great question - I have no idea. If I knew how, I'd have already done it. I'm taking suggestions though!

How will getting rid of these 11 things change your life? I believe that getting rid of these 11 things will snap me out of this perpetual funk that I have been in the past several months. I think it's fair to say I haven't been enjoying my life as much I should be, and it's because I'm hanging on to those 11 things (okay, 10. But I need to cut out RedBull too).

December 12 : Body Integration : When did you feel the most integrated with your body? Did you have a moment where there wasn't mind and body, but simply a cohesive YOU, alive and present?

Answer : What a deep question (and on a Sunday too! What are they thinking?). I would again say the day Kenzie came home from the hospital. A part of me that had been missing was returned to me, and I don't think I've ever felt more "whole". It's a true nightmare to have to leave your child somewhere every night and then have to call and check on them, and give a phone code to a nurse just to hear how your own child is doing. So to have her home, in my arms, where I could look at her and see how she was doing at any given moment....was perfect. :)

#reverb10 / December 10

December 10 : Wisdom - What was the wisest decision you made this year, and how did it play out?

Answer : I'm going to give two answers here. I'll tell you the wisest decision I (we) made for Kenzie, and then the wisest decision I made for myself.

For Kenzie, I think our decision to keep her out of daycare has been the best thing for her. I don't even know if a daycare around here would take her with all her special needs, but regardless....to have her here in her home, and away from all the germs that a normal daycare environment would bring has been so good for her. **knock on wood** she's only gotten 2 colds in the 9 months she's been home from the hospital. Considering her premaurity + the fact that 18q- kids can have an immune-system deficiency....we just couldn't take the chance. That being said, she is missing out on some things :being around kids her age, etc. But...her being sick all the time wouldn't be good either.

For me, it was my decision to become a Scentsy Independent Consultant. I love Scentsy products, and this gives me the opportunity to have a little something just for me, that doesn't involve insurance companies, or feeding tubes, or doctors visits, or Early Intervention. Just me.

That's it! Stay tuned for tomorrow!