Whats Been Goin On???

So, do you like the new blog???? I got bored with the old one and thought I would do some spring cleaning or sorts. A thousand apologies for not blogging recently though. We have been super busy in the Buchanan household. Just when I feel like we are getting into a routine, another appointment is added. Last week we increased Haley's PT to twice a week and she still has OT once a week. Add that to preschool once a week and she only has one day off right now. Probably mid-June we will add another day of preschool. She will get a taste of what the M-F grind is like at an early age huh??? PT wanted to step up the intensity to see if we could get her more mobile sooner. She has also started visual therapy through a state funded program called the Governor Morehead School. A teacher and therapist came out to the house last week and they will probably come once or twice a month to work on her tracking (side to side eye movements) and over all vision. Although they said her vision is great, she has problems moving her eyes in order to see things (oculomotor apraxia)

Haley is definitely getting stronger and stronger each week, she is doing so many new things. She is getting better about spending time on her tummy and is making more and more attempts to roll over on her own. She can pull herself up to stand when holding our hands. She is taking some steps while being held. Her tummy muscles are getting stronger and she is getting better at sitting up, and can sit up on her own from about a 45 degree angle. She has started putting some of the appropriate shapes into the appropriate holes in a shape sorter. If you ask where her belly is, she points to it. If she is holding her brush and you tell her to brush her hair she will do it. Same thing with her shoes, she will try to put her shoe on (well just lay it on her foot more or less, but she gets the basic idea). She is pointing like crazy at everything in sight. She is absolutely obsessed with putting her sippy cup into the cup holders on her high chair and in her car seat. It is so funny to watch. She seems to do something new everyday. One positive thing that has come out of Haley's developmental delay is that every new accomplishment is never taken for granted. We are just in awe of every little thing she does. It really makes you appreciate the small things.

We are planning to go to a Joubert Syndrome conference in Cincinnati in July. We are really excited to meet other families going through the same thing. I have already met some pretty amazing parents of children with JS online, I look forward to getting to meet them in person. There will be a lot of experts on JS at the conference, so I'm sure we will learn a lot and will hopefully better understand what Haley is going through and how to better help her.

Next month brings a lot of doctor appointments. We have the follow ups with the neurologist, Dr Nelson, and the opthamologist, Dr Saunders. She also has her 15 (can you believe it....15 months!!!) well visit at the beginning of the month.

I've gotten behind on picture taking and posting them lately, I promise to get some up soon. We are experimenting with new hair styles. I have still yet to cut this little girl's hair and it seems like it is always encrusted in a layer of snot or fruit of some sort. I have tried every hair clip or bow known to man kind, and every single one she manages to pull out and promptly stick in her mouth. I'm also trying pig-tails and pony tails. Needless to say she is getting very used to her hair being messed with. But she is really cute when her hair is up, so I will be sure to post some pictures of that.

Also, take a second to check out the new link on the right side of this page for the Children's Rare Disease Network. Although this is not specific to JS, I still wanted to post this site to help raise awareness to rare diseases in general. With such rare conditions as JS, it is often difficult for such a small group of people to get recognition, band together, and ultimately raise funds to help with research, education, and prevention. This group helps bring rare diseases, such as JS, together into one central place for one common goal. Thanks for looking!!!!