End of October Update

People keep asking me when I'm going to update the blog? Well... there isn't much to update but I will try to update around the first of the month unless something major happens that way you don't have to keep checking in everyday wondering.

The 8th of October was our only real appointment this month. We travailed to Flagstaff (about three and a half hours away) for a mandatory ENT exam for Landen to be in CRS (Childrens Rehabilitative Services). I was not looking forward to the drive with both babies just to be there for twenty minutes and then drive home. When I got there I found he has also been scheduled to see physical, occupational, and speech therapists as well as a nutritionist and a family councilor. So it was a long day but we were able to learn lots. The occupational and physical therapist gave me some exercises to do with Landen on a BIG balance ball to help build some strength in his muscles since he has such poor muscle tone (a symptom of this disease). When we say "muscle tone" its not what people usually think of. They think of a well toned body builder who has nice muscle definition but, it mostly refers to the natural strength of his muscles. Landen has as a symptom of his disease what is often called "floppy baby syndrome" meaning his muscles lack the natural strength that most babies have. For example... Brayden who is only 6 months old can push up off the floor and get up on his hands and knees pretty much normal where as Landen at that age when put on his tummy could lift his head for only short periods of time and would cry because he couldn't get up off the floor. Landen also tires easily when he playing. The nutritionist had no idea what to say when I told her about Landen's diet issues but promised to do some research and call me... I'm still waiting.

This month Landen managed to break both sets of hearing aids and we had to have them fixed. Left ear both times I don't know what he did to them they just suddenly stopped working but they are fixed now.

We have also been introduced to a wonderful family in Flagstaff who has a little girl Landen's age who also has IRD. It has been helpful to know that there is someone else out there. With the rarity of this disease we are lucky to know anyone that close especially someone who is almost the exact same age. Its interesting to discover as I talk to her mother how similar she and Landen are we are hoping to get to know one another more soon.

So October is over and it was a slow month for us its been 3 weeks since Landen's last doctors appointment. Everyone has been holding their breath and waiting to see if he got to see genetics or not. Friday we finally were able to set an appointment we will be heading to Phoenix on the 8th of November. (Which happens to be my little brother Tim's birthday... you got a shout-out don't expect a gift) He got lucky and the doctor he is seeing is also the geneticist for the other little girl that we know. Its nice that he will see a doctor who has actually seen this disease before. So you can expect a post in a week or so letting you all know how that went.

Things have been slow as far as doctors but our family is starting to get back to normal... or as close to normal as we can get. Our emotions although still strained over this devastating news are starting to move into acceptance. I don't suppose the hurt will ever go but we are moving more towards what can we do here and now for our precious baby. Landen is truly a blessing just happy as can be every moment lighting up the world!

We have recently moved to a bigger apartment! We have our own washer and dryer now (with two kids this is a real BLESSING!). We just celebrated Halloween it was tons of fun I made Landen and Brayden's costumes the went as Mario and Luigi! SO CUTE!!! The boys had a blast at the church party and trunk or treat (although I gave all their candy away, we are on diets and they aren't going to eat it) Scott is now looking towards Christmas and is begging to put up the tree tomorrow November 1st, which is better then last year since I was out of town with my family he put it up on Halloween day. I'm thinking about giving in since we will not be together for Christmas this year. I will be in Utah for John's wedding :) Scott will only be able to fly in the day before the wedding he has to work Christmas Eve and Christmas Day.