A quick update!

Sorry it has been so long since our last update!! Things have been crazy around here. Daylon has started speech once a week and is doing really well with it. Still isn't talking a whole lot at home but will rattle off a lot more words while at speech. I think he's just being stubborn and has two big sisters to talk for him at home.
I emailed all of Daylon's doctors not long after we returned from convention and most of them seem to be on board with using Dr. H's protocol. We saw his regular pediatrician about a week ago and asked him about ordering some of the tests that Dr. H recommends and he did. That was no fun at all, 4 little tubes of blood in one shot. He took it like a trooper though, like he always does. We still haven't gotten the results back, but I am very interested to hear what they are. I did ask the doctor about the metopic fusion that Dr. H commented on and he felt that it wasn't necessary to do any other testing for that and because it was only one area of the skull that fused too early there isn't a concern. What a relief to hear that!!
I have also talked with the hematologist in Great Falls and he wants to be included in Daylon's case whether it is just getting the results of all of the labs and seeing if he can find anything different than the others, or if he wants us to come up there periodically, it hasn't been decided yet.
I am not sure how to take Daylon's endocrinologist. I emailed him the same information I emailed all of the other doctors and the response I got from him was "Thank you. Give him a hug for me."
As far as the shots go, he is doing wonderful with them!!! He occasionally fusses and cries when it's time for the shot but right after it's done, he's off playing again like nothing happened. I am praying that they are working. We won't really be able to tell a whole lot until our appointment in October, unless the labs that Dr. C ordered for us show something different. He has grown since starting, but I'm not sure if it's due to the growth hormone or if it is growth on his own.

On a side note, I have started my own business with Thirty-One gifts!! I am extremely excited about this new adventure! Thirty-One is a Christian based company and the name itself is derived from Proverbs 31:10-31, The Virtuous Woman. Our mission is to Celebrate, Encourage, and Reward Women!! Part of my own mission with this is to help others. My plan is to donate 10% of party sales to either The MAGIC Foundation, or to my husband's cousin Jason and his family. Jason is fighting metastatic melanoma and had his fourth brain surgery on his 40th birthday. With every party booked, I will be asking the hostess if they want to do the show in honor of MAGIC or Jason and whichever they choose will get 10% of the party sales.

Thank you all for your support!!!

Jean

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!!
Jean

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 www.luciandgeorge.com.

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!

Update!

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.
Jean

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!!

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!!