Wednesday, July 28, 2010

We are home!!

We made it home yesterday afternoon and are recuperating from the long trip. I will be posting my notes from the classes we attended in the next few days. Daylon has his speech therapy evaluation on Friday and I will post details on that also. For those who have called I will give you a call as soon as I get things a little more in control here at home. Love to you all!!

Friday, July 23, 2010

We Made It!!

We made it to Wheeling on Thursday afternoon. Our hotel is amazing!! We also got to see Darryl Hall of Hall & Oates leaving as we were arriving. That was pretty exciting, to get to see a celebrity while we were here!

Day one was filled with driving, getting settled, and seeing three doctors. We saw Drs. Harbison and Netchine at 5:30, they confirmed Daylon's diagnosis of SGA. Dr. H also recommended looking at a couple of other hormone values including: IGF-1, IGFBP-3 (binding protein for insulin-like growth factor 1), and ALS (which is a carrier for both IGF-1 and IGFBP-3). All of these hormones play an important role in how growth hormone (both natural and synthetic) is utilized and manufactured by the body. We also saw Dr. Simmons (a pediatric orthodontist) who checked Daylon's teeth and said that they looked good with minimal crowding on the bottom and a decent gap on the top to allow for growth, but once his permanent teeth come in, he may need intervention.

Day two was filled with classroom time. Lots of information to consider and mull over, once I have a better understanding I will pass on to you all. I will say that there was alot of information and a lot to think about, along with some other possibilities that need to be considered. I also spoke with the Division Consultant for SGA with the MAGIC Foundation regarding our experiences with our current doctors and she gave me some good feedback to think about and promised some additional information within the next few weeks. All of this followed by an Amazing Dinner Party and Recognition of our MAGIC HERO, George Chmeil, who has raised over $100,000 for the MAGIC Foundation in the last two marathons he has run. To read more about George and his story, including all he has done for MAGIC, go to

Sunday, July 18, 2010

What a Week!!

This last week has gone by surprisingly fast. We have been packing today. We got the girls ready for their trip to Gramma's house and they will be heading out soon. :-( I am going to miss those two little boogers!!
Tomorrow Auntie will come over and we will figure out how we are going to get everything loaded into the car and get it loaded so Tuesday morning all we have to do is jump in and go bright and early at 6am.
Our plan is to get as far as Mitchell, SD on Tuesday night, then leave there Wednesday morning for Preston, MN. We will stay in Preston with a friend of mine and head on to the convention on Thursday.
I can't even begin to tell you how excited I am!!! I can't wait to meet Dr. H and everyone that I have networked with from the MAGIC Foundation. It should be a wonderful time!
I will try to update you all as we go through our journey to get to Chicago and how we are doing along the way! Thank you all for your support!

Monday, July 12, 2010


This last week has gone amazingly well for Daylon with his shots. He is no longer giving me the guilt trip every time I pull out the case for the Humatropen, before as soon as he saw the green case he'd start walking around saying "Ow, ow, ow." I think he has realized that this is just part of the day to day routine and I am getting better at giving it and finding a spot that doesn't hurt. Which can be hard when it is supposed to be subcutaneous and the little man has very little fat on his body. We went to the doctor on Wednesday for a followup on his hand, which he burned on the 4th, and weighed and measured him. He is 30.25 inches long and 21 lbs. 6 oz. and his hand looks wonderful!!
ONE WEEK until we leave for MAGIC Convention!! I am so excited!!!!! We received a Parent Training Scholarship from PLUK (Parents Lets Unite for Kids) for $700. This scholarship is on a reimbursement basis, so we will pay for our gas and things and they will reimburse us when we send our paperwork in. I am waiting to hear back from Chase Hawks Memorial Association to see if we received a grant from them. I just talked to my aunt & I think we are going to take her car instead of our Jeep. We will get much better gas mileage that way!! If you can help at all it would greatly be appreciated and I will be sending out tokens of our appreciation to those who have already donated. Thank you so much for all of your help. If you would like to donate but do not want to use paypal you can email me and I will get back to you as soon as possible with our contact info.

Monday, July 5, 2010

Only Fifteen Days!!

Only fifteen more days until we leave for MAGIC Convention!! Shawn is going to stay home and work so my aunt is going to come with us!! I am so excited! I have a few applications out for funding, hoping to hear back from them soon. Please pray with us that funding comes through so we are able to go.
This means so much for Daylon & us. This is NOT a vacation to Chicago. This is our opportunity to learn more about what all of this means for Daylon and what we can do to help him. Our itinerary is packed full of education and training. Thursday we have our appointments with Dr. H and Dr. Simmons. We will be able to confirm his diagnosis and make sure we are on the right path for him. We will also be learning about his disorder and the best way to treat it. Friday from 9:00 to 10:30 we have "Treating RSS/SGA", from 10:45 to 12:00 "Not Just About Stature", from 1:00 to 2:30 "Genetics and Epigenetics of RSS: Yes! We CAN Understand!", 2:45 to 4:00 either "The Mystery of IGFD" or "Results of MAGIC's RSS Genetic/Epigenetic Study" and finish out the day from 4:00 to 5:00 with "Ask the Doctors" and at 6:30 dinner to honor George Chmiel, Jr. who has ran two marathons in support of children with growth disorders. Saturday we will have from 9:00 to 10:15 "Seven Strategies for Supporting Siblings" and "Gendocrinology: The Science of Genetics and Hormones for Non-Doctors" and from 12:00 to 1:00 "It's OK to Dream! with George Chmiel". Saturday afternoon we will be able to go to Navy Pier to walk around and have a little free time and Sunday before we leave is MAGIC's Annual Meeting. So as you can see it will be a very full, educational weekend!!

Friday, July 2, 2010

Going so much better!

The last two nights have gone 100% better than the nights previously. Night before last I decided to try giving it in his bottom. He said Owe before I even got to him with the pen device. Then didn't say a word or make one sound when I actually gave it to him. Silly boy!!