Happy Monday to everyone. Hope all of you were able to spend our Independence day the way you wanted. We did a LOT of sleeping in our house. We had a nurse Friday for half a day, so this momma was able to sleep in till 10am!!! I did wake up to pump at 4am and had to go into B's room to suction his trach at 6am, but was able to fall right back asleep. THANK YOU JESUS!!! Gabe and I went out to celebrate his service for our freedom and had a nice little lunch, then went back home and the 3 of us took a great 2 hour nap. Once we woke up, we ate some more food, went for a little walk, and you guessed it, went right back to sleep! The rest of the long weekend was spent playing and relaxing as much as possible. It was quite nice.
This week (on Gabes birthday) our little Bear turns 10 months!! Its been such a ride, and is about to start taking off. Brody has been quite the character these days. He makes us laugh every day. I am so thankful for the opportunity to be his mommy and watch him grow. Im not gonna lie it is hard some times, but I wouldn't want it any different. Like I said before, I think he is teaching us more than we are teaching him.
I am excited to say that we got the phone call back from the childrens clinic in CINCINNATI!!! We were happy to hear that, depending on insurance, they will take his case. Hopefully our insurance will help us out with this. We talked for a while with the nurse, and she just wanted us to know that this is a HUGE commitment. Financially and emotionally. There will be multiple trips to Cincinnati, and we have to be committed to this, no matter what! Once our insurance is processed, we will be scheduled for the first visit. Because this is the Trachea place to be at, there is a 3 month waiting period before we can get in. Like everything else, its all about waiting. Once we are there, it will be a busy 3 day visit of different studies and procedures. You would think they can just look at his Trachea and say ok, this is what we got.... but nope. They will do different procedures to look at his lungs, stomach, esophagus and trachea. On the 4th day of our trip, we will sit and meet with the whole team and see what they find and what their plan of action is. Hopefully they can give us some answers and a plan to prolong his life. Im not leaving there till they give us SOME SORT OF ANSWER!!! Thankfully he won't need to stay in the hospital over night, and can stay with us in a hotel. They did say that the Ronald McDonald house is more than likely full, so that is option is out, unless a miracle happens. I am so thankful that they have accepted to see us. He was 1 of the 120 cases presented to the team last Wednesday, and he was a "chosen" one... YES... answered prayer right there!
The next couple of months are sure to be busy.
In August, we will go back in for his second reconstructive skull surgery and maybe another scope of his trachea. That will be another 3 day stay here at the awesome Dell Children's! Ill write more about this when we have a better plan on whats going to be done. I know right now, there are a couple of different options being talked about, but nothing has been set. We will discuss with the doctors in 2 weeks, and schedule then.
September, he turns 1... holy moly in 2 months he will be 1!!! His life celebration is being planned and is sure to be one for the books. Everything in his first chapter of life will be celebrated, in the most cost effective way possible! ;)
October is when we should go to Cincinnati. I can not wait! We need to start saving $, working extra, and planning for the first of many trips. Maybe I should start looking for a second and third job! I will give every single penny for this kid.
With that being said, this week, we have a family wedding to attend in South Padre. We decided to make a long weekend of it, because lets face it, no one wants to drive 6 1/2 hours for just 1 day. Im so excited just to get away and marvel in the beauty of the ocean. Its by far my favorite thing to look at and just stare at. To see how big and beautiful Gods creation is, is just amazing!!! I hope Brody enjoys it just a little bit. My parents and Gabes parents are going with us for some help and sanity, so hopefully 4 day of relaxation is in my future.
Thank you all soooo much for the kind words of inspiration, and all of your love and prayers. We would be no where with out faith and the continued prayers and thoughts!!
http://www.gofundme.com/58c7p4
We love yall!!
-S
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