Sunday, December 30, 2012

The most WONDERFUL time of the year!

 Hello Strangers!! (Who am I kiddin'? I'M the STRANGER!)

We have been doing so wonderfully during this wonderful time of the year. Since I last posted SO much has happened. We wanted to let you all know that all the money for Gunner's testing HAS been raised. Praise the LORD! The only thing we are waiting on is for all of the money from the fundraisers, etc to start coming in. After, we will make an appointment to get Gunner's blood drawn (I will let you all know when we do that), and then we send it off to GeneDx and wait. They told us that the testing takes 7-8 weeks to get the results back. Since Gunner has a RECESSIVE form of EB, they have to look more in depth at his DNA.( If he had a dominant form, they would know a "hot spot" to target to look for the altered genes.) So that is the first great news!

Thanksgiving was great! We spent time with all sides of our families. We had great food and good times with loved ones. That is what Thanksgiving is all about... RIGHT? :)

As you all know, Gunner's VERY FIRST birthday was on December 14th. We had his birthday party on December 15th at the local community center. They had a spacious room to rent. His party "theme" was jungle animals. A sweet woman named Patsy handmade both Gunner's smash cake and his big birthday cake. We described what we wanted it to look like and she went beyond expectations! It looked and tasted great. Everyone was talking about how good it was!
 The big cake was half white and half chocolate and his smash cake (below) was all white cake. :)
 Gunner starting to blow out his candles.
 Daddy had to help Gunner a bit. :)
After Gunner blew out his candles and everyone clapping for him!

Gunner did great with his cake. Cody and I thought that he was going to just rip into his smash cake. We put it in front of him and he didn't know what to do at first. I put his hands in it and he eventually started squishing it in his hands and tasting it a bit. :)

I LOVE this picture ^^^^^^^^^^^^^^^^

He also got so many wonderful gifts. From clothes, to gift cards, to toys, and even a toy shelf to ORGANIZE all these toys! (Everyone knows mommy is thankful and loves to organize :))

Gunner also got an early birthday from his "nene" Shelly, Aunt Paige, Uncle "Day Day", and "Grumpy" (Jeremey).... a blue car that Gunner can ride in and we push him in it. He loves it! Gunner's Grandma and Grandpa Nance, Aunt Katy, and Aunt Mia also got him an "off road" radioflyer wagon that he loves too! We take them both almost everyday and push or pull him around. :)

Also, on the 14th, Gunner's birthday, we got a bog box in the mail from an unknown person. Inside was a butterfly glow stick, a bumble bee pillow pet, a toy semi truck (that he loves), TWO pairs of EB friendly shoes, and a card. The card was so sweet. It wished Gunner a happy 1st birthday and wasn't signed a name, but signed, Love, your EB friends and family. It also said they love reading his mommy's blog and keeping up with him. I was so humbled. It brought me to tears knowing that someone sent all these things to our prince for his 1st birthday. Not wanting any recognition just to say Happy Birthday and he is loved! :) Well, we are recognizing you. THANK YOU!

There is an AMAZING organization called The Butterfly Fund. This is a family run organization that helps children with EB. They held and organized their second annual Secret Stocking Project. People would sponsor a child with Christmas gifts. This program was such a BLESSING to our family and I know many others as well. Gunner got an activity table, a puppy that teaches him his ABC's and 123's, a little lamb that sings a lullaby, leap frog maracas, and a baby einstein music player. He loves it all!

Mommy also got a butterfly tote bag, some make up, a beautiful figurine, and two hand made ornaments. I LOVE the personalized teddy bear one!

Thank you again sweet Butterfly Fund and our secret stocking sponsor!!

I bet you all are wondering... DID GUNNER GET TO GO VISIT SANTA??! Why, yes he DID! There is a local Christmas tree farm by us (the same place that has the pumpkin patch we visit in the fall), and we went there. As daddy and mommy thought, he cried before he even got on Santa's lap. But sometimes, I think those kind of pictures make the cutest Santa pictures! Santa told him that in a couple years, Gunner and Santa would be best buds, and I'm most certainly believing that they will.
Cody, Gunner, and I also went to a church in Tulsa called Rhema. Every Christmas season they put up sooo many lights and have many different displays. In the picture below we were on a bridge and the lights moved with the Christmas songs that were playing. :)
Cody is now working here locally. He is not traveling anymore. Gunner and I are so happy that he is home every night after work and on the weekends. :)

Christmas was great! Christmas Eve, we went with my family to my grandmother's house with all my family and had a big dinner and exchanged gifts with them. Christmas morning we woke up early and went to see what Santa brought Gunner. It took him a while to wake up that morning. It is so cute. When we try to wake him up, we whisper his name and eventually say it louder. The little bugger just gives this little smile and keeps his eyes closed or rolls over haha. No coal for this boy! He was good! Santa brought him an elephant that shoots up colored balls in the air, and a little Cars couch that is just Gunner's size. It also folds out into a "bed" and we use it to lay him down on to watch Barney movies he also got while mommy does dressings in the morning. Gunner also got new Barney and Sesame Street DVD's and a few assorted types of sippy cups. He has so many toys now with his birthday and Christmas being so close together, but we are so thankful and he loves them all!

Gunner is doing great right now. He is actually eating a little rice cereal in his bottle and tolerating it being thick. I am so thankful for that. I know most one year olds are eating normal table foods by now, but Gunner is doing everything at his own pace and we are okay with that. At his one year appointment we found out that he is only in the 9th percentile for weight and the 10th for height. He is also in the 12th for head circumference. His pediatrician wants formula to be his "main" source of nutrition right now until 15 months. Then at his 15 month check up we will see where he is at again. We saw a speech therapist on Christmas Eve, she said because of where he is at in his weight, to stop pushing the baby foods so much, and make mashed potatoes, or puree our own foods added with lots of extra calories and just try to get him to eat those foods with a spoon instead of the baby food. We try daily with the spoon. He will take bites off of it but will not swallow. He will though swallow thick cereal in the bottle now without gagging. We will be having a speech therapist come to our home after the new year and work with him more often. We are really trying hard, because malnourishment is common with EB. Butterfly children's bodies are using the calories they take in for healing instead of growing like in a child without EB. Or there is also the times when a mouth blister or throat blister prevents them from eating from the physical pain and they simply cannot consume enough calories to do either healing or growing. This is why g tubes are so common for EB children. BUT, we are staying positive that we can get Gunner back on track soon and that won't be an issue. If it comes to that we will deal with it, but for now we are working super hard for him! We just love Gunner so much. He is so so smart.. Watching him play with his toys like a big boy makes me smile and breaks my heart all at the same time. Thank you ALL so much for following our sweet boy. We are SO thankful for all of you! Have a Happy New Year!

 The padding you see around his car seat straps was handmade by some students that are studying to become OT and PT's! They made these out of a memory foam mattress and designed them to custom fit to his car seat and strategically placed to not rub his neck or his hips. this is such a blessing to us as well! They were so sweet and did such a great job. They were inspired by Gunner and you can tell they put their heart into this and it wasn't just another school project. Before this we had to put a blanket in between all the straps, which wasn't ideal for Gunner in the summer. It would cause him to be hot and heat makes him sweat and makes his skin even more apt to break down. We are so happy these straps were made for him. Thank you ladies for making these!
 Helping Nene decorate her house for Christmas!


Gunner holds his own bottle now!