Galactosemia Foundation Conference 2014

I totally forgot to mention that the next conference will be held in  . . . drum roll please . . . Orlando, Florida!!!! Across the street from Down Town Disney @ Walt Disney World Florida!!!!! Better start saving our money!!!!!!! Who wants to come?? :)

Galactosemia foundation conference

We went to the Galactosemia Foundation Conference last week in Dallas, TX. This was our 2nd time going. We left early Thursday morning. Thanks to my mom working for Alaska Airlines, Gregory has flown a lot and is a little pro!

 

We got there around lunch time TX time. We stayed at the Hyatt at the airport where the conference was held. It was really nice. We checked into our room and then headed to the Lobby to see what there was to eat for lunch. When we got down there I ran into a mom and her 2 adorable boys who I met through this blog!!! That was so exciting! Her youngest is Gregory's age and has Galactosemia! Here is Gregory and his new friend! I just know we'll be friends for a life time!

 

Then we had some lunch. All the restaurants in the hotel had a "Galactosemia Friendly" menu which was awesome! I wish every restaurant had this!!!

After lunch we headed down to where they were taking volunteers for research being done on Galactosemia. I filled out some paperwork on Gregory  and then they took his height and weight. He was almost as tall as Elmo! We then headed back up to our room for a much needed nap.

After nap time we left Lamby all tucked in and headed downstairs to register for the conference, ate galactosemia safe candy, got our picture taken, talk to people, met friends, got some dinner, and headed back up to our room to get some rest for the night . . . only after switching rooms due to our AC not working.

The next morning was the first day of the conference. Started bright and early at 8:30! They provided some breakfast before hand and we dropped off Gregory to the child care they had there. We listened to various topics like . . . research being done on fruit flys, grants that were given and the research that was done, speech in Galactosemia, Genotype-Phenotype correlations in Galactosemia, Special Education/IEP, How to teach your child to recall facts, ect. Sounds fun, huh?

 

Then it was lunch time! So nice to just let Gregory eat what he wanted there. All Galactosemia friendly!!! Yummy too! At our table we met a family from last time and met a new family that we really enjoyed! I know we'll keep in touch! They have a 1 year old with Galactosemia. 

Gregory's eating corn on the cob in the picture. 

After lunch we dropped Gregory back off to child care and then off to go learn some more . . .

Afterwards we picked up Gregory and went up to our room to relax for a bit. Dallas got a huge monsoon as we headed up to our room. This was the view from our room. 

 

Then back down for more hotel food.  Then that night was the Sweets Social. All sweets Galactosemia Friendly! We were pretty tired so didn't stay long. Back up to the room for a good nights sleep. 

Day two. Pretty much the same as the day before. More to learn like the diet, fundraising, complications in Galactosemia, speech issues, bones and calcium, ect.  Met more families. Lunch was Mexican and pretty good! Here Gregory is eating a taco.

The desserts at lunch this day were yummy!!! Mousse, macaroons, and sopapillas!

These pictures of Gregory eating the macaroon (that he loved by the way) were just too funny. No one can ever accuse Gregory of being void of expression! 

 

Tried to get Gregory to take a picture with me. He refused! You stinker!

He held still with daddy though. Urrr.

 After lunch is it was more learning and more fellow-shipping. We checked out of hotel, ate some dinner at the hotel . . . again . . . let Gregory run around to kill time before we had to catch our 9:00 pm flight to go home. 

Here is our precious boy asleep on the plane between us both.

 

All in all it was a great trip. We're really glad we went! 

Its here!!!

Tomorrow morning at 7:00 a.m. we leave for Dallas, TX! Yee-haw! We will be there for the Galactosemia Conference!!!! So excited! Cannot wait to learn more, meet people I've met over the internet, ect. Last time was so encouraging and discouraging at the same time which was very draining. Please pray for strength and clarity for Tommy & I as we try and soak it all in. I can't wait to come back and share everything with you guys!!!

Exciting News!

Initiated by my mother in law and with the help of my mom and I'm sure more friends and family to come, we are trying to form a non-profit group for Galactosemia!!! My mom has recently set up her own non profit Bustin Out Of Boise. She's going to help us set up one too! My mother in law is putting on a Costume Party this fall as a fundraiser! If you want to come or help in anyway, please let me know! Should be so fun! More posts to come as we try and do this!

Public

Go run errands with me sometime and this is often the face you will see.  Oh Gregory. What am I going to do with you? He is my mystery man. Gregory's sensory issues are not as evident when he is at home with just me and Tommy. But out in public its just right there in your face. As I've wrote before . . . I'm just being honest . . . I struggle with not having the "well behaved" or "nice" child. This was hard for this first time mommy to get over. Along with that came how to deal with a child with Sensory Processing Disorder in Public.

When we were first learning about Gregory and SPD we were also learning how to deal with it. Out it public he does weird (not appropriate public behavior) things, throws fits, ect. When he would "act out" I would respond as any normal parent would (should) do and discipline the behavior or correct it. You can't just fall on the floor in the middle of the floor at Big 5 for no reason. You can't spin in circles at In n Out hitting strangers in the process. Another honest moment of mine? I address these issues because I'm being a good parent. I also do this because I want these strangers to think I'm a good parent. I am in control of my child. He doesn't walk all over me. Because when you see a child acting out this bad in public the parent must not be in control, right?????

WRONG. 

Gregory has sure opened my eyes to that one! You never know why that child might be "acting" out. I now have learned to not care what people think (hard for me) and treat Gregory according to him being Gregory. I know he's screaming in the middle of Costco not to act out . . . but because something in his body needs to. I find ways to soothe him. Not discipline him. And who cares is Mr. Snotty Pants next to us thinks I don't have my child "under control". Gregory is my main concern. I do whats best for him. Don't get me wrong though. Gregory still does non-sensory-4-year-old-boy stuff. Such a fine line to know what is what. 

So, to all you parents out there with kids who don't have sensory issues . . . now you know. Don't roll your eyes. Give a sympathetic smile. 

To all you parents out there with kids who do have sensory issues . . . can I get wha? wha? 

Side Note: Costco is a great Galacotsemia friendly place to eat! 

 

Another

I've tried to keep this blog strictly about Gregory. So, I've never thought about writing this. I got to thinking about it and I think its important to write about it. It goes along with what I'm sure a lot of parents of children with Galactosemia go through . . . Do you try for another? 

Gregory was our first. We always wanted two kiddos. No more. Tommy and I both know we could not handle more than 2 kids. God gives you what you can handle. He knew we could handle a kid with Galactosemia (plus more) though. :) We wanted our kids to be no less than 3 years apart. We've been trying for almost a year and a half now and still no baby. I did get pregnant last August that resulted in a very early miscarriage.  We still are trying. We want God's will in everything we do and find peace in knowing that its all in his timing. I think God is waiting for Gregory to be at a good spot in his life to handle having a new brother or sister. When he squeezed my friend's newborn's head (on her soft spots. MORTIFIED!) I am reminded of this. Ü

To have another or to not to? 

When we had Gregory we had counselors at his metabolic clinic talk to us about having another, risks involved, tests that can be done to see if the baby in your belly has galactosemia and what you can do if it does (yowza! no way!), yada yada yada. Everyone has to make that decision. Here is where we stand:

We love Gregory. 

We have a 1 in 4 chance of our next child having Galactosemia. 

We have a 2 in 4 chance of our next child being a carrier like me and Tommy. 

We have a 1 in 4 chance of our next child having nothing to do with it once so ever. 

Low chances right? But Gregory has it. 

What if its a girl? There are lots of yucky things that girls with Galactosemia go through. Is that fair for us to chance that? Just because we want to be selfish and have another child? 

If the next child was like Gregory, would easier in some ways . . . Gregory wouldn't feel different. Making dinner. Easier. But are those things to trade for good health?

We feel content with just Gregory. But if you can have another, why wouldn't you? I think we would all benefit in the end. Don't think Gregory would be good as an only child. Or would he? What about when Tommy and are gone some day?

What to do? What to do?

We choose yes. We want another child God willing. God knows what we need and we find peace in that. In the mean time, we keep trying (not a terrible thing, right?). And then hopefully I'll be posting about Gregory's little sister or brother in the future. And if not, that's okay too.

Gregory on his bike

Gregory can finally ride a tricycle at almost 4 1/2!!! There have been moments along the way where he has pedaled a little bit. It wasn't until just recently I noticed him on our back patio that he could really go (in the small space the patio provided). So last night we took it to the streets! Well, it was just the side walk out front. And boy can he go! Finally! My 4 year old little boy can ride the bike his mamo, momo, grandpa got him for his 2nd birthday!!!! Honey I'm so proud of you!!!!