I have this shirt that I wear to work, it say " Be Happy
Be Bright
Be YOU.... and I some how manage to always put it on, on the days where I am just NOT feeling it. I usually wake up in a sleepy slumber, grab something to put on, and get going. Its not until the drive to work that I realize what I am wearing. ( I work at a spin, yoga and pilates studio, so I get the comfort of yoga pants and tank tops every day) My drive to work is 25 minutes of hill country views. Trees and hills and clouds as far as the eye can see. Its a beautiful drive. Its also my time to think and reflect. I cry ALOT on my drive. I think a lot. I pray even more. I then decide to be HAPPY, BRIGHT, and ME.
I have seem to be wearing this shirt a lot lately, and I think its Gods way of telling me to snap out of it. I've been a mess lately. Everything just seems to be getting to me. I especially find it hard and annoying and sad when people stare. It makes me uncomfortable. So I stare back at them. Why are you staring at us? We aren't different. We are just living with what we know! We are a normal family. We are normal. We work, we eat, we cry, we pfight, we love, we laugh, just like any other family. Why is it so hard for you to look away. Give us our space. Yes, I understand my chid has the biggest, most loving, and happiest eyes you ever seen. Is this a problem for you? Yes, I understand that my child has to eat through a feeding tube. ( I over heard some drunk idiot making fun of us when we went out for Gabe's bday) I about got up and punched him in the face. Instead, I just stared at him and smiled. No lady in the dressing room at the store, I don't need to go to another room to suction my sons trach. Sorry that the sound of the machine is bothering you. DEAL WITH IT...
I have also been flustered about his feedings. The doctors want him to take more food in, so we upped his feeding from 200mls to 260mls. My body has decided that 200mls plus, is just too much to make, so we have to supplement with formula. His body HATES formula, so he throws up at least 1x a feeding. Im sad for him. He knows when he is about to throw up and gives me this look. His happy little eyes just get so sad and scared. I hold a towel, blanket, shirt, or anything I can find, up to his mouth to catch what ever comes out. When he's done, he smiles, and grabs his paci, and his eyes become happy again. Its hard for me. If I was making enough to feed him, we wouldn't be going through this. His body loves my milk... I love giving him my milk.... I feel like Im failing him by not making enough. Its sad for me. I do realize that I was blessed with the ability to make milk, so many mothers can't. I bet they are just as sad as I am. Its hard to see your childs eyes turn from happy to scared and sad. This too shall pass, and I pray that he starts to handle the food. We saw our dietitian yesterday and she decided to reduce the amount to 215mls. We will see how this works. Hopefully it works. We need a break through with his feedings.
Gabe has been gone for a couple of days for his annual training. This means 2 things. 1. I am on my own after the nurse leaves. and 2. That I am not forced to put B to bed every night. Usually, B falls asleep on my lap about 8-830 and Gabe has to force me to put him in the crib. I usually talk him out of it until about 930, and then he wins the battle and up we go to put him in bed and say our prayers. But the past couple of nights, I haven't been able to force myself to put him down until about 11. I have just been enjoying the sweet sweet cuddles. His hand on my chest, his head on my arm, and the feeling of protection. He relies on me for protection. Its in this moment when i think back to the shirt Im wearing. Be happy, be bright, be you. Yes Bear, for you I will be happy, I will be bright, I will be ME and you will be you. We will be all this together. I give my fears to God at this moment, because I lean on him for protection. I know he will protect us and calm my fears. We are who we are, and thats the way its gonna be.
Thursday is our appointment with the Cranialfacial team to discuss his next skull surgery. It will be in late August-Early September. This surgery will be to take the distractors out, shape the top of his skull and I believe move his forehead forward. All that will be confirmed on thursday. So I will update you then. I pray for peace and for my heart to calm.
I pray for all of you, our friends. Our prayer warriors. I pray for all of you that have donated to us. For all of you that have sent me a message of love, a gift of sunshine, or just a smile and a hug. Every kind gesture from each one of you has gotten us through the last 10 months. Thank you for coming along on this journey and for helping us pfight.
Remember... when you are feeling down, only you can make the decision to BE HAPPY, BE BRIGHT, and BE YOU!!!!
http://www.gofundme.com/58c7p4
Love always,
-S
Tuesday, July 22, 2014
Monday, July 7, 2014
Relax your heart and mind, for you will need it in due time
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
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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