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.

Here Goes Nothing

So, I am a little nervous about making this post, worried that I will not be successful, that it will fail, and what people will think, but here goes nothing (no I'm not trying to get pregnant yet! LOL) I've created a new blog to kick off my new fundraising endeavor. I have been running again for several months and have decided to turn my new found hobby into a fundraising effort. I won't talk much about it here, as not to take away from Haley's blog and to constantly post about it here may annoy people who could care less about running. So, go check it out, this will all make more sense once you read it......and let me know what you think.

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!!!

My, How Parenthood Changes You!

I've been thinking a lot lately about my life and how I do more and more things since becoming a parent that I vowed I would never do. I find it kind of comical to look back at my ridiculous ideas and realize now how much parenthood changes you.

I used to hate ANYTHING on my refrigerator. It was literally blank, no magnets, pictures, notes, calendars......NOTHING before having Haley, and even after she was born, I still resisted putting things on the fridge. But then came preschool and craft projects being sent home, and little doodles made while playing in the floor. Next thing I know, my fridge is covered in the handy work of little Haley. And now I proudly cover my once barren fridge with the artwork of Haley and I think it is beautiful!!!

I also used to think kids kissing their parents on the lips was icky. I don't know why, but I did. Well now Haley is really learning to show affection, she has been giving hugs on command for several weeks. Just the other day I asked her for a kiss and she plants her sloppy, slobbery little lips right on mine......I could just eat her up!!! I love those sweet little kisses now and can't get enough!!!!

I once thought it was such a waste of a good day to lay around in your pajamas all day long. Now there is nothing better than spending an entire Sunday in our PJs cuddling, playing and watching football. Who needs to get dressed when you can stay comfy and cosy with your baby??

I thought I would never have my child in daycare. I have to admit, preschool is one of the best things that has ever happened to Haley. Her social skills have improved ten fold and I have to give a ton of credit to her teachers for all of their hard work, it has made all of the difference in the world for her.

Then there are some things I am not so proud of.....

I used to say I would never use television as a babysitter, or a reward, or as a coping mechanism. Well, I'm embarrassed to say, Sesame Street is now a life saver in our house. I don't know how we would make it through getting breakfast or dinner made, stopping out of control temper tantrums and where else would we learn useless and random Spanish vocabulary from our new Sesame Street friend Ovejita. Everything in moderation right?

The germ-phobe in me thought I would wash every single cup, spoon, toy etc that fell on the dirty floor. Who was I kidding, who has time for that crap!!??? I would spend my day at the sink sanitizing things. A quick brush off is good enough for me at this point.

I also thought I would never cave into the habit of fixing more than one meal at a time in order to get Haley to eat. I was always of the mind set you eat what I fix and if you don't eat....too bad. But I am so paranoid because Haley is at risk for kidney problems and an early sign is poor appetite, plus she has been teetering on the low end of the percentile charts for weight, I push food on her constantly. If one food doesn't work I will try another, and another, and another. But I am slowly learning this is just typical toddler behavior and trying not to give into this at every meal.

All in all I think we are doing a pretty good job sticking to our initial parenting philosophy, but we are learning that compromise and improvisation are a big key player. One ideal that I still haven't given into and will fight it to the death.....I will NOT drive a mini-van!!!!!! (disclaimer....sorry mini-van moms, nothing personal, I just can't do it LOL)

Meet Clyde....

Hi my name is Clyde.......

I want to introduce a new member of our family, his name is Clyde. Today is our anniversary and to celebrate we went to Charlotte yesterady and had a nice lunch, a massage and went shopping at SouthPark. Apparently, the Mecklenburg County Animal Shelter has an adoption drive on the first Saturday of each month and as we were leaving, I caught the sign for it out of the corner of my eye. Against my better judgement we went to look at the animals and the first dog I saw was this little fella and I just fell in love with him instantly. He is part German Shepherd and probably part lab, we're not sure. He was surrendered to the shelter by his previous owners because they could not afford to feed him, he was a pretty neglected little guy. When he was brought in they estimated him to be 4 months old and only 17 pounds, he could not even walk on his own feet because there was so much muscle wasting, he was walking on his knees. They thought his leg was broken because he wouldn't bear weight on his right rear leg, and he was full of fleas. He doesn't act like he was physcially abused thankfully. He is very social and not very timid. But needless to say, he has had a rough life. He was taken in by some wonderful foster parents who took great care of him and acclimated him to living with other dogs, they have 3 beagles as well. I just had to have him.

We had been considering getting another dog for a while now, we felt like Rhett would benefit having a companion and wanted to get one for him before he got too old to enjoy another dog. And Haley just loves dogs too. We just didn't know if we could handle another puppy right now with everything going on with Haley. He is probably close to 6 months old now, still a puppy, but doesn't need quite as much attention as a really young puppy. He was already house broken, crate trained, neutered, vaccinated and microchipped, all thanks to his foster parents. And I could not imagine a dog much sweeter than this little guy, a real lap dog!!!

Rhett really seems to enjoy him so far. He is trying to establish his dominance of course, but not showing any agression towards him at all. We kept Clyde in a crate last night in our bedroom and he slept through the night. But Rhett would not go to sleep, he kept walking over to the crate and watching him so I had to move Rhett's bed over in front of the crate so he would go to sleep, he seems very protective of Clyde already. They are already playing in the yard together like old pals. I'm sure Rhett will teach him many things.

Haley, of course, loves him. She just squeals when she sees him and wants to pet him. Clyde is very tolerant of her. She has been tugging on his tail and feet and he doesn't mind a bit. He is still a bit clumsy and I am afriad he may knock her over accidentally, so we keep the interactions short and very controlled.

The cats however, are not big fans of him yet. Parker has slapped and hissed at him several times. Baxter is curious but cautious with him. I'm sure they will come around eventually, but for now they are keeping their distance.

So, yep, we are crazy I guess. But I just felt like running into Clyde was fate and I had to have him. We have a small menagerie, and if its true that pets help increase your lifespan, then we should live to be 130!

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!!!