Haley in the News

I had almost forgotten about the reporters while we were at the NIH then one of Will's customers called today to tell him he saw him and Haley in the USA Today. Here is an excerpt of the article. Click here for the full story.

Will Buchanan watches as his daughter Haley, 21 months, pets Viola, a therapy dog, at Children's Inn at the National Institutes of Health. Haley is being treated at NIH for Joubert Syndrome.

A golden Labrador is a treasure for this child and her family

BETHESDA, Md. — Will Buchanan walks several steps behind his toddler at the Children's Inn at the National Institutes of Health.

Getting around is challenging for 22-month-old Haley. She has Joubert syndrome, a disease that affects balance and muscle coordination. She uses a tiny walker and wears a harness, which her dad is holding to keep her upright.

Suddenly they both smile. A big yellow dog lying in the hallway is wagging its tail at Haley. Ever so gently, her dad guides Haley to the floor to sit beside the dog. And ever so gently, Haley reaches out for the dog's muzzle. "Dog," she says. The dog stretches out a paw and touches Haley's leg.

"We have two German shepherds at home (in Dallas, N.C.), so she's really happy to see this dog," says Haley's mother, Laura Buchanan. "This makes it easier for us."

Viola, a golden Labrador, belongs to the Children's Inn, a private, non-profit residence on the NIH campus where families whose chronically ill children are being treated at NIH can stay. Mars Inc. donated Vi to the inn in 2008 after she was retired as a Seeing Eye dog. The kids can spend time alone with Vi and attend special activities with her.

"Having a dog here helps the children relax, feel more at home, and makes their treatments more bearable," says Meredith Carlson Daly, media relations coordinator at the inn. "There have been many studies done showing how beneficial animal therapy can be. We see those benefits here every day."

Merry Christmas and Happy New Year

Sorry for the delay in posting some Christmas pictures, its been a busy couple of days.....I need a break!!!! So I will make this short and sweet with just these few words and a couple of pics. Enjoy!!! (More pictures are on Picasa....follow the link on the right hand side of this page)

Limbo (NIH Day 3)

Another long exhausting day is over. It started off with a bang with Haley having blood drawn, which, as you would expect, was not a good way to start the day, but she did very well and seemed to forget all about the torture within a few minutes. But she didn't get much downtime after the labs. We went directly over to radiology to have a liver and kidney ultrasound. It took both Will and I to hold her down to get this done. It is not at all painful, but she has this thing about not wanting to show her belly. What can I say, she is modest, I like that!!!

See, I recover quickly!

Daddy and I checking out the Cookie Monster gingerbread house

That was all for the morning time, and we all came back to the Inn took a nap. After lunch she had an echocardiogram (an ultrasound of the heart). She did surprisingly well with this which was essentially the same procedure as the abdominal ultrasound, just a few inches about her belly though. I'm not sure what the difference was other than she wasn't poked with a needle 10 mintues prior to this ultrasound like she was for the earlier ultrasound. Then we met briefly with a nutritionist, and she was very pleased with Haley's diet. Didn't really have much to offer with advice on how to make her diet any better, which made me feel pretty good about the job we do feeding her nutritious food. Haley has always eaten just about anything we put in front of her, but lately it has become a struggle with typical toddler picky behavior so I've been worried about how well I actually am feeding her.

Then we met with Dr Heller, a gastrointestinal doctor who studies the liver complications associated with JS and the other ciliopathies called portal hypertension and congenital hepatic fibrosis. I won't bore you with the explanations of what those are....google it if you are interested. I really wasn't expecting much out of his visit, but it turned out to be a very informative visit and a wake up call to not be so nonchalant about possible liver complications in the future. He said that Haley's liver and spleen were slightly abnormal on ultrasound. He said that the texture of her liver was abnormal but could not tell if it was true scarring associated with congenital hepatic fibrosis. Her spleen was also slightly enlarged. He said that at this point to not worry too much about it because all of her lab work was fabulous, actually better than the average JS patient that they see. He suggested that she just be followed yearly with ultrasounds and lab work. At first hearing her ultrasound was abnormal scared the bejesus out of us, but by the end of our meeting he made us feel a lot better, all we can do is keep a close eye on her and if she does develop liver problems she will be in good hands. But even though we were told not to worry, we still feel like we are in limbo waiting for the other shoe to drop.

Once we got back from the hospital we had yet another fun surprise waiting for us. The Montgomery County Police Motorcycle Units came to visit the Inn. About 30 or so cops on motorcycles came roaring through the front gates of the NIH with their lights and sirens blaring.....and guess who else was riding a motorcycle.....well, Santa of course!!!! This time we were prepared with a camera for Santa's visits, but for the third time Haley rejected Santa. Fox News was there filming. Here is a link to the story they ran, Haley wasn't in it but it shows what they did for the Inn.

Do you have a license to drive that walker young lady?

Santa upgraded his sleigh

Third strike with Santa

Playing with Viola again

We will be leaving tomorrow, and will be so ready to get back home!! Although the Children's Inn and everyone at the NIH has been wonderful, there really is no place like home. Tomorrow Will and I have to have blood drawn and then we meet with Dr Gunay for the final reports and wrap up. I assume we will talk about any need to follow up here with them and what our next steps are.

Another Long Day (NIH Day 2)

Whewww....we are just getting settled in for the night, we had a pretty busy day today. We met with Dr Gunay and her nurse Joy this morning and they got a complete medical history on Haley and attempted to do an exam. Haley let Dr Gunay know right off the bat she was in no mood to be messed with today, so the doctor didn't push it. That is one of the good things about particiapting in a study, it is completely voluntary you can choose at any time to stop if you feel like you have had enough and the doctors and nurses don't keep pushing something that is obviously not working.

Our next stop was the opthamologist. Because retinal dystrophy is related to JS, they wanted a complete and thorough eye exam done. Haley's vision is normal for her age, there are no signs of retinal dystrophy and they agree that she has ocular motor apraxia. But the opthamologist did point out a new finding today with an abnormality with one of her eye muscles which may or may not be related to JS. Basically one of her eye muscles are lazy and she tilts her head to correct her vision. He said it was nothing to worry about and is actually pretty common, lots of people walk around with it and never know it. It can be corrected with surgery, which he did not recommend right now since it didn't seem to be causing her any problems.

Then Haley managed to catch a quick nap and when we got back to the hospital guess who was waiting on her......Santa Claus....AGAIN!!!! This time his helpers were three Washington Redskins Cheerleaders. Of course we left the camera in the room, but there wasn't much of a photo opp....she refused to even look at him again. And of course she got more gifts from Santa. They really are too good to us!!!

After that Haley had to have an EEG (electroencephalograph) to study her brain waves because JS is linked to seizure activity (which she does not have a history of). I just knew this was going to be difficult, but the tech, Jackie, knew exactly how to handle Haley.....this wasn't her first rodeo!!! She somehow managed to hook 23 leads to Haley's head. It took about 20 minutes to get set up, she had to measure and mark on her scalp, clean each individual lead location, then apply and tape each lead down then wrap her head in gauze to keep her from yanking them out. She played some corny kids video for her and let her play with some toys while she was getting her set up. Haley struggled with her a little bit, but in the end Haley knew Jackie would win this fight. We haven't gotten results from that yet.

That was our last appointment for the day so we decided to reward Haley with a visit with the resident therapy dog at the Inn named Viola. Viola lives here at the Inn and is a 6 year old yellow lab. Very sweet dog and I think it made Haley's day. As soon as she saw her she lit up. And when Viola left the room Haley stalked her all over the building. There also happened to be some reporters from USA Today there taking pictures and of course they couldn't resist taking pictures of Haley with Viola. I'm not sure what their article will be about but they said they would probably publish it sometime in January and would contact us to let us know when it was coming out.

Tomorrow looks to be another busy day. First she has to have some blood drawn, this is what I have been dreading. I hate having her blood drawn, its a huge ordeal. Then she will have an ultrasound of her liver and kidneys then an echocardiogram. Then after nap time we meet with a nutritionist and the GI doctors. I'm tired already!!! Better get in bed!!! Good nite.

What a Stressful Day!!!! (NIH Day 1)

Man, are we beat!!!! This week is the long anticipated NIH trip for the kidney/liver study. In case you don't remember....short recap....at the JSF conference back in July some doctors from the NIH were there who are studying what are called ciliopathies. JS is believed to be a cliopathy which may be the root of the kidney and liver failure that is sometimes related with JS. At the conference they invited people with JS to come to Bethesda, MD to participate in their research study. The whole trip is paid for by the NIH and we get free medical testing which will help us know for sure whether Haley will have kidney/liver problems in the future. We were kind of worried that because none of her current doctors had even heard of JS that they may be missing early warning signs of future problems so we felt like this trip would be worth while.

So we boarded a plane this morning bright and early at 7:30 am and off we go to the NIH. This is the first time ever flying with Haley. Now I hate flying to begin with, but add a toddler into the mix.....you can just say I was filled with DREAD!!!! Everything went surprisingly smoothly though, no problems getting through security with all our baby paraphernalia, no outbursts or temper tantrums during the flight, we really couldn't have asked for better behavior!! We are so proud of our big girl! But it was an emotionally taxing trip, schlepping our junk around and worrying how Haley would handle the plane ride.

Here are some pictures of Haley walking in the Baltimore Airport while we were waiting on the shuttle to the NIH

We are staying at the Children's Inn at the NIH. It is pretty nice, they really work hard to make it seem as much like home as possible. And let me tell you, the NIH is no joke. You have to go through an airport type security check to even get through the gate.....get off the bus, with all your crap, run it through the x-ray machine and walk through a metal detector type of stuff!!!

Tomorrow we meet with Dr Gunay and her nurse. I'm not sure what all is on the itinerary, but she will have a bunch of tests including an echocardiogram, a kidney and liver ultrasound, some blood work, and a 24 hour urine collection. They are pretty good to not push the kids too hard to do things that stress them out too badly, but I'm sure there will be some amount of protest on Haley's part.

And I also have a new first to report!!!! Haley has been able to pull herself to a standing position for a while now during therapy and if we help her, but she has never done it spontaneously and completely on her own. Saturday when I got her out of bed in the morning, she sat up put her hands on the rail and stood straight up. And needless to say we had never bothered to move her mattress down and had I not been standing right there she could have toppled right out. Of course, we moved that mattress all the way down before she went down for her next nap!!!

Let me OUT!!!!

Oh! So this is how you do it!!!

Well, we will try to keep you updated on what is going on while we are here. Take Care!

Check Out My New Wheels

Haley got her new walker in last week. She is doing really well with it. Here are a couple of pictures of her taking her new wheels for a spin. Her favorite thing to do is walk up and down our driveway, and anyone who has ever been to our house knows what a tough hike that is. Our driveway is about 200 yards or so long with a step hill going up towards the road. She can make it the entire way up without any help.

We are getting ready for Christmas. So far we have only managed to get our shopping done for Haley, that was a huge task by itself. I can only imagine each Christmas will become harder and harder to keep from going overboard. Shopping for kids is so much fun!!!

We are also gearing up for a trip to Maryland to the National Institute of Health. Haley is going to be in a research study for people with Joubert Syndrome and other disorders that affect the liver and kidneys. She isn't having any symptoms of kidney or liver problems, but she is at risk and this study will be able to tell us if she is in danger of developing them in the future. I really REALLY dread the flight. We have never flown with Haley and have no idea how she will react. I hate flying as it is but throw a toddler and tons of baggage in the mix and all I can picture is disaster!!! Pray for us!!!! We will keep you all updated on what is going on while we are up there.

Movin On UP!!!!

Growing up is inevitable, and today marks yet another milestone for our BIG girl!!! Haley is being moved up a class at her preschool. Granted it is the one year old class, but she is moving up nonetheless. Her teachers have been debating the move for a while now. She is needing more intellectual stimulation and more structured activities and learning opportunities. The main reason they were waiting is because she was not mobile and they were afraid she would just be trampled on by the other mobile kids. They decided she was ready, they were just waiting on a spot to open up. Her first day in the big kids class will be Monday. A lot of the kids in the class she is moving to were in her class before they moved up so she will have some familiar faces. I am sad to know that she is moving from her current teachers. Ms Ann and Ms Violet are so good with her, but they are just right across the hallway, so they won't be far away.

Haley is getting better and better at walking. She is doing GREAT with her walker, she has learned to steer it and go pretty much anywhere she wants to go with it. I still keep the walking wings around her waist because I'm still scared that she will fall. I know she will fall eventually and will fall a lot, but she still doesn't have that protective reflex down pat and I still think if she goes down now she will go down hard.

Also, I can't remember if I posted about this before, but she is OFFICIALLY CRAWLING!!!!! Thinking back to January when this whole therapy thing started, I could have never imagined the day that she would be able to crawl. She has come along way and has worked so hard to get to this point!!!

And for those who are wondering what is going on with our insurance. We are in the process of the second appeal, and we are waiting for their response. I know what it will be, but I am hoping for a miracle. We were however able to qualify for 100% coverage through the state's early intervention program. We have been involved with them since the beginning, but their level of support is based solely on income minus medical expenses and childcare expenses. When we first started we did not qualify for any help, but because we have incurred so many medical expenses and I haven't been able to work full time since January we were able to get ourselves down to 100% coverage!! It is quite a relief, but we still have eat the costs of her therapy sessions dating from May until October. This is where the appeal is so important, we are hoping that insurance will come back and decide to pay for all of those visits.....so hope and pray that our appeal makes it to a sympathetic soul's desk (I'm not even sure if those exists in the insurance world HAHA). We are also waiting on Haley's walker to get here (which thankfully was covered by the early intervention program). The one she has now is a loaner from the state, her new one is much nicer.

Don't forget about the Joubert Syndrome 10x10 Fundraising Campaign. I am still brainstorming on several small projects and maybe one large event sometime next summer. But with the holidays coming, I know things like this aren't on the forefront of people's minds, I just wanted to remind people not to forget about it.

Happy Thanksgiving everyone!!!

A Creepy Cow and a Crazy Blonde Lady

Happy Halloween!!!! Haley is obsessed with the Chik-fil-A commercials, everytime one comes on the television she starts pointing and "moo-ing" at the TV so we decided she should be a cow for Halloween.

There was a Fall Festival at school last week. All the kids dressed up and there were some games. One of the teachers dressed up like a cow and Haley really enjoyed seeing her.

Then tonight, we managed to dodge the rain and Haley got to go out and enjoy trick or treating for the first time, last year she was a little too small to enjoy dressing up and seeing people. And yes, we shamelessly used our kid to get some good candy loot too!!! I've never been one to get into dressing up for Halloween but thought I would do something this year and got a Kate Gosselin wig (you know, the crazy mom on Jon and Kate + 8 with that ridiculous hair-do??). Well I don't think our neighbors got my joke, they all looked at me kinda weird and sympathetically thinking to themselves "what did that poor girl do to her hair?" I ended up ditching the wig after 3 houses. Enjoy a good laugh at my expense!!!

Fun Outings

Haley had a couple of fun little outings last week. Last Thursday she had her first official "field trip" with her preschool to the pumpkin patch. It was really chilly that morning, but she seemed to have fun. We heard a story about "pollination", she wasn't too interested in that....wonder why? Then we went and played for a bit and picked out pumpkins before going on a hayride.

I really like cows.....wow, thats a big one!!

Lets go find a pumpkin Mommy

How do I choose, there are too many?!

Ok, I think I like this one!

Daddy and I on the hayride

She also got to go to the Kings Mountain Battlefield trail with Uncle Moo and PawPaw last weekend.

Not sure what PawPaw was trying to show me, but it must be interesting!

Cooper sure is funny



Gotta take time to pet the puppy



Finally made it to the monument, boy that was a long walk!



Me and Uncle Moo