We all know that one person, maybe more, who just seem to talk and talk and talk. They are the person that can make friends with a tree. Most often than not, some one will get annoyed with just how much they can talk. But to that "Chatty Cathy", talking is just their way of life. Its just what they do. Some even make a living out of it. Some spend their drive to work talking to them selves, or making phone calls just to talk to someone. Its just who they are and what they do. They talk.
Every day when I get off of work, the first thing I do is call Gabe to see how his day is. Its a routine. 12pm phone call. Some days, our chats are longer than others, and some are just real quick and to the point. I love to hear his voice, and its just a calming sort of peace for me. We usually share a laugh or 2 and always hang up with an "i love you, gina" (gina is my nickname.. long story). Today was one of those "hey someone is in my office, ill call you back in a sec" "ok, bye", and I continued my drive home. As I stopped at a red light, I grabbed a set of papers that I have to fill out for Brody's dr apt tomorrow. Another Dr. apt. These things are never ending. Its his 16th month developmental apt. Every 6 months we have to go so they can track his development. And I cringe at the thought. I cringe, because if we were not medically dependant, this wouldst be an issue. I cringe because we are "followed by doctors". Every time I have to fill out these papers, I.CRINGE
Today's cringe of the paper work was just a bit harder than usual. It was like someone just came out of the paper and punched me in the face. The very first section was "COMMUNICATION". Does your child say four or more words IN ADDITION to "momma and dada"? My first and only thought at that moment was "WELL NO YOU JERKS, MY CHILD DOESN'T SPEAK!" And then the tears poured down like rain. It hit me. I just want to hear my child say "i love you, momma" I want to hear him call out for me and gabe. I long for that sweet voice that I know is inside of him to just say "hi, bye, momma, daddy, i love you" any thing. I just want his sound.
His sweet little sound.
When will I hear his voice. I have waited for that moment since I found out I was pregnant. I was soon going to be a momma with a little nugget running around screaming. Telling me he/she loves me. Telling me random things that would make me laugh, cry, cringe. I was always gonna have that little voice that I would call "mine".
I sat at the light and cried. Thinking of the fact that I may never get to hear the voice or the 3 sweet words every parent loves to hear "I.LOVE.YOU"
At that moment, as I threw down the papers, my phone rang. It was Gabe calling me back to finish our convo. In a short 5 min, I went from my "peppy" self, to a "somber pissed off with a heavy heart" kinda person. The tears were rolling down and I just had to let Gabe know how my heart was hurting. I ranted for a while, talking in between my sobs. "Why us?" Why can I not hear him say "i love you".... Why do they have to send us THESE papers. They know my child doesn't speak. Cant they send us some with out this section? Every time I read the questions, it was like I was getting hit!
It was then that Gabe said the most truest words I have ever heard. "He may not say it with words, but he ALWAYS shows us in his own way that he love us" It may be with his excited little squeaks, his random open mouth kisses, or even the pull on my nose.... but he will always have his own little ways.
And just as quickly as the rain stopped, my tears were gone. He was right. Bear will always know just the right way and time to not tell me but SHOW me that he loves me... because like the old saying goes "Actions speak louder than words"
So with this CHRISTMAS season upon us, I ask one thing of all of you... go SHOW some one you love them. Sit and listen to some one speak. Enjoy the sweet sound of your child's voice. And above all else, NEVER be afraid to use your voice in a way that you want to. Sing, laugh, cry, shout, do what you can with your voice, and never take for granted what you have, because some of us don't get that.
http://www.gofundme.com/58c7p4
With a loving and hopeful voice,
S
P.S. There is a device that we can HOPEFULLY one day put on his trach to help him make sound, but at this moment he is not ready for it. We have tried and he failed the test run. Hopefully soon or when we go to Cincinnati, we can try again. But for now, its just not for us.
Wednesday, December 17, 2014
Thursday, December 11, 2014
All is calm, all is bright!
The holidays have ALWAYS been such a big and important part of my life. Its always filled with good fun, lots of family time, and too many friend gatherings to handle. This year is no different. Well, it sort of is, because we have a 15 month old. Last year, our holiday season was a bit gloomy, because we were still reeling from bringing home baby, and getting ready for his first brain surgery (5 days before Christmas). It was like we could never just catch a break. If things even calmed down for a bit, something was thrown our way. But we over came every obstacle and had EVEN more to be thankful for. A year has come and gone, and all I can say is that - ALL IS CALM, ALL IS BRIGHT.
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Bear has really been movin' and a'shakin lately. The little miracle boy that has brought so MUCH joy to all of us, is just AMAZING Gabe and I every day. He keeps us on our toes and is a TRUE boy. (he toots and laughs about it...how much more "boy" can you get) We have been working on a lot of milestones with his all 3 of his therapist and they are so amazed at his progress. He is a little behind on some stuff, but continues to improve every day. We are getting ready for that moment when he just takes off and starts walking, but for now, walking along all the furniture and windows will work for us. He LOVES to get into anything and every thing that he isn't supposed to have. If you have it, he wants it, and when he doesn't get it, you get his little temper tantrum. Typical baby, I suppose. He make us laugh with all his squeeks and squeals, and when you don't pay attention to him, he YELLS at you (just ask gramma Mary). He is learning a little bit of sign language here and there, but our favorite is when he ask for "more". More of anything, but especially food!
His eating by mouth was always a little delayed, and I think it was because he had been throwing up formula/breast milk EVERY day. That nasty taste it left in his mouth just set him off from food. Im happy to say that he hasn't thrown up since SEPTEMBER and has really made a turn on eating. He woke up one day and just decided that food was an awesome thing. He loves eggs with ketchup, chocolate cake (thanks Gramma Mary and Auntie A), cookies, and well basically anything but "mushy baby food". Gabe is still convinced that he is getting more on the floor than in his stomach, but hey, baby steps..... we are still learning! Its amazing to see him stuff his face, and if I wasn't too busy stuffing my face on Thanksgiving, I would've taken pictures of him stuffing his face. It was SUCH a blessing and we are so THANKFUL that he is taking huge strides on eating. Hopefully one day soon (*crosses fingers*) we can get him off the feeding tube.
As most of you know, we have been taking trips back and forth to San Antonio to get his helmet adjusted. After his last skull surgery in August, his dr wanted to get him in a helmet (doc band) to get just the right amount of shaping. He hated it at first and it was something to get used to, but now its just another thing in our life. All I can say about it is WOW.... the change is AMAZING. Not only have both of his skull reconstructions been SUCCESSFUL, but this helmet has really been the topping on the cake (chocolate, if you must ask ) It is so amazing to see how far medical technology goes. I never would have thought that my child would have to be a part of "medical numbers" or "medical scans and followings" but we are, and to see the change each month is just truly a blessing.
He has to wear is for 23 hours a day, for 6 months. We are going on month 2, so just a bit longer to go. I have yet to paint it, and EVERYONE is telling me that I need to, but I just cant pick a design that will match ALL of his outfits... I know... such a decision to make
A couple of weeks before his 1st skull surgery
His first skull surgery included distraction hard wear (screws) that we had to turn 3 times a day that pushed the back of his skull out and gave room for his brain to grow.
His third surgery was to fix the top "bump" and move his forehead forward
He's just as happy as can be, even with his helmet
He sure does enjoy that HOUR a day he doesn't have to wear it though
Just playin' while waiting to get his helmet adjusted
ALL is CALM , ALL is BRIGHT
Next month is going to be HUGE for us. We finally got the go ahead to go see the trachea specialist in Cincinnati and the appointments have been scheduled! We are in the process of booking flights and hotel. We got our itinerary in the mail a couple of weeks ago, and it looks like its 4 days of procedures, test,scopes and anesthesia. It will be a long scary week, but I am looking forward to hopefully finding an answer. I am faithful that they will be able to do something for him. And any thoughts of getting bad news is being thrown out the window. I cant wait to take him on his first airplane ride, and all thought its not for a "fun" trip, Im sure the traveling experience is going to be one to remember!
I hope that ALL is calm for you and your family, and I hope that ya'll are shining BRIGHT this holiday season. I pray for a happy and healthy up coming year for each and every one of you and your family.
Much love and lots of warm hugs,
-S
Wednesday, November 12, 2014
"A house is where you live, but a home is where your heart is"
When Gabe and I found out we were expecting our lil nugget, we decided that living in a 695sf apt was not going to work....so we quickly found the most perfect little subdivision to build a little home. When we started building, the guy said that the house would be ready in late August - Early September. I fired back with a little "worried mom" look and said, LOOK... we NEED to be in the house by SEPTEMBER....i am due Sept 16. He said he would do everything in his power to do what he could. But just by our luck, it seemed to rain that whole summer and progress just wasnt looking like a Sept due date on the house. We even had some thieves come and steal all the copper wiring which put building behind about another 3 weeks. UGGGHHHH seriously??? At this point, I was a worried mess. By August, I had to accept the fact that we were not going to be in our home and settled by the time the little nugget arrived. C-Section was scheduled for Sept 9 at 7am.
After my second baby shower in August, I cleared out most of the open area of the 695sq apt and set up shop for baby. I cleared out the coat closet and put all his clothes and diapers and stuff in there....we were ready... as ready as we could be. It was the coziest little apt ever, and only onething person, was missing.
The weekend of our scheduled delivery, our familes all came up for the "last super". We had a fun filled Sunday of football watching, a nice dinner at Stubbs BBQ, and we even took our parents and the "dad to be" out for some drinks. It was so fun to prepare to welcome our nuggt home. A weekend I will never forget.
Monday, Septemeber 9 came and I was up bright and early (430am) getting dressed, doing my hair, and just excited as ever.....we were bringing home baby!!! ........
Fast forward.... you all know the story.... if not you can catch up here: http://pfightingpfamily.blogspot.com/2013/11/the-end-of-week-but-beginning-of-future.html
We left the hospital on Thursday, after saying good bye to our sweet boy, only to meet him at his temporary home - DELL CHILDRENS HOSPITAL NICU a couple of hours later.... I couldnt belive it... we came home to our small apartment empty handed. Everything that was soooo meticulously cleaned and prepared sat empty and waiting.... It was the worst day a new mom and dad could have. We sat and cried and wondered where we went wrong.
2 months and 3 days went by... day in and day out, our new home was the NICU... our heart was there... Every day was a routine. Wake up, clean up the apt, get dressed and go sit in his room at the NICU. Some days were better than others. Surgeries here and there...and oh yea, we were still in the process of building a home.
God knew what he was doing. He set us up for this. He was gonna pull us through.
On Nov 4, we got the green light to start preparing for a discharge....everything had to get put in to place before we could leave. Nursing had to be scheduled for when he came home, medical supplies had to be delived and equipment had to be set up. It was a race against the clock to get everything in order.
On Friday, November 8, we finally closed on the house and got the keys. It still wasnt 100% ready, but we needed a house. Saturday, Sunday and Monday we moved everything in. Set up, cleaned and unpacked. We were "ready" . Things were in place.
On Tuesday, Novemeber 12, 2014 our house was finally made a home. We got to bring the most precious addition home. Finally. We did it. We were a family. Our house was a home.
Its been 365 days. 52 weeks. 1 whole year of having our sweet boy home with us. He makes us laugh, makes us cry, makes us thankful for what we have. His sweet tenacious soul is everything you could ever want. He is the light that brightens our day. Every morning we walk down the stairs and he is sitting there waiting with his nurse, to shine his smile. It the best thing to start our day.
It hasnt been the easiest year. We have had to do things that no parent should have to do. We both became nurses when we became parents. Our families had to learn the ins and outs of "trach" care. But we all came together and have done a great job.
We have a home, not just a house. Our heart is there. He made it complete.
After my second baby shower in August, I cleared out most of the open area of the 695sq apt and set up shop for baby. I cleared out the coat closet and put all his clothes and diapers and stuff in there....we were ready... as ready as we could be. It was the coziest little apt ever, and only one
The weekend of our scheduled delivery, our familes all came up for the "last super". We had a fun filled Sunday of football watching, a nice dinner at Stubbs BBQ, and we even took our parents and the "dad to be" out for some drinks. It was so fun to prepare to welcome our nuggt home. A weekend I will never forget.
Monday, Septemeber 9 came and I was up bright and early (430am) getting dressed, doing my hair, and just excited as ever.....we were bringing home baby!!! ........
Fast forward.... you all know the story.... if not you can catch up here: http://pfightingpfamily.blogspot.com/2013/11/the-end-of-week-but-beginning-of-future.html
We left the hospital on Thursday, after saying good bye to our sweet boy, only to meet him at his temporary home - DELL CHILDRENS HOSPITAL NICU a couple of hours later.... I couldnt belive it... we came home to our small apartment empty handed. Everything that was soooo meticulously cleaned and prepared sat empty and waiting.... It was the worst day a new mom and dad could have. We sat and cried and wondered where we went wrong.
2 months and 3 days went by... day in and day out, our new home was the NICU... our heart was there... Every day was a routine. Wake up, clean up the apt, get dressed and go sit in his room at the NICU. Some days were better than others. Surgeries here and there...and oh yea, we were still in the process of building a home.
God knew what he was doing. He set us up for this. He was gonna pull us through.
On Nov 4, we got the green light to start preparing for a discharge....everything had to get put in to place before we could leave. Nursing had to be scheduled for when he came home, medical supplies had to be delived and equipment had to be set up. It was a race against the clock to get everything in order.
On Friday, November 8, we finally closed on the house and got the keys. It still wasnt 100% ready, but we needed a house. Saturday, Sunday and Monday we moved everything in. Set up, cleaned and unpacked. We were "ready" . Things were in place.
On Tuesday, Novemeber 12, 2014 our house was finally made a home. We got to bring the most precious addition home. Finally. We did it. We were a family. Our house was a home.
Its been 365 days. 52 weeks. 1 whole year of having our sweet boy home with us. He makes us laugh, makes us cry, makes us thankful for what we have. His sweet tenacious soul is everything you could ever want. He is the light that brightens our day. Every morning we walk down the stairs and he is sitting there waiting with his nurse, to shine his smile. It the best thing to start our day.
It hasnt been the easiest year. We have had to do things that no parent should have to do. We both became nurses when we became parents. Our families had to learn the ins and outs of "trach" care. But we all came together and have done a great job.
We have a home, not just a house. Our heart is there. He made it complete.
http://www.gofundme.com/58c7p4
Its been such a special year. A year of learning, and loving, and just BEING.... I cant thank you all enough for all the continued love and support. The prayers, and the gifts and just the hand to hold while on this journey. Thank you all so much. Cheers to a year and cheers to MANY more.
Sleepin in his cozy little bssinet for the first time...
Meeting his puppy brother for the first time. (that machine is his feeding machine)
Saying good bye to our WONDERFUL primary nurses ... (they wouldnt let us bring them home with us :( )
All bundled up for the cold night and his first ride home
Trying to get all the supplies organized.
Tuesday, September 23, 2014
THE DAY HE GAVE ME LIFE
September 23 will always hold a special place in my heart. It will be a day that I will NEVER forget, for 2 reasons....
Sunday, September 23, living in all the glory of single girl - sunday funday on west 6th in Austin, my life was soon about to change. While quickly playing a game of skee ball at a local spot, by myself, waiting for my friend to pay the tab, he walked up to me and challenged me to a game. I laughed and quickly accepted. I won. He challenged me again, this time for lunch. I won...again. At that moment, my girlfriend - Amanda, ran up to me and shouted that "we needed to leave NOW", we were going to be late for our skee ball league game, at a different bar. (don't judge me for being in a skee ball league, it was fun, and yes, there really is a skee ball league) I almost ran out of there with out speaking another word to him, but was stopped, and he asked for my number to take me to the lunch I had won. "Here's my number, call me, maybe". After 2 weeks of texting/talking while he was away on a work trip, we finally met up for another sunday funday and lunch. The rest is history. On that day, September 23, God knew that placing us both in the same spot, our lives would never be the same. He gave me a life that I could never dream of. He knew that one day, we would be the parents to this special angel that he was creating. Only he knew what he was doing on that Sunday - by the way, I thought God rested on Sundays.... however, that mans work is NEVER done.
(weird that as I write this, one of Gabes favorite songs comes on my pandora...YES God, I am listening)
Fast forward....
Monday, September 23, my child lays in the NICU at Dell Childrens, waiting for the MOST important surgery of his short little 2 weeks of life. He lays there peacefully sleeping, intubated to help him breath. I have never seen his whole face. He has been tubbed and taped and wired since the first minutes of life. Today would be the day that I tried to talk the doctors out of. It wasn't the normal - go to the hospital and hold him all day, kind of day. I got there 3 hours earlier than usual to get my cuddle time in, knowing I wouldn't be able to for 7 days. "I know there is a different way to get him to breath, he doesn't need a trach" I said. For 2 weeks, I selfishly fought with the doctors about a trach. I couldn't wrap my head around the fact that our lives would not be "normal" "NO, I don't want to see what a trach looks like on a DOLL" this is my child...he is not a doll!! "NO, I don't want to talk to other parents who have been through this" this is us, not them. Finally, the doctors said I was making it worse by not doing this. The tubes could potentially harm him. He needs this. Our families all came in. We all prayed. We all cried. I was sobbing... like the ugly "Kim Kardashian"crying. I couldn't contain my emotions. I couldn't understand why this was happening. My child. My 2 weeks old baby was being wheeled away in a tiny little incubator. Wrapped up so innocently. His big peaceful eyes staring at me through the window. Not knowing what was happening.
We waited for about 2 hours for his cranial facial dr to come out of surgery and tell us that our option of carving out his nose holes (his little nose holes are closed) was not going to happen, and he in fact was getting a trach today. The ENT was about to start. My world was closing in. I cried for another 2 hours. I was so hopeful that there was another option. But this was it. Our fate was a trach baby. God knew what he was doing. He was giving us life.
After about 5 hours of surgery, we were finally able to see B. They warned us about what we would see. He was going to be COMPLETELY sedated and paralyzed for 7 days. There was to be NO movement from him so the trach could stay in place. I walked in to see his face. No tape, no tubes, no wires. His cute little chin, his perfect lips. His cute little face. He was free. I walked in to a life less child. He lay there still as can be. He was pale. It was the most horrific sight. I just wanted to hold him and cuddle him, but all I could do was stare at his amazing beautiful face. It was at that moment, between the tears, that I realized "God gave me life". He gave me a life that I could never imagine I would have as a parent. It was at that moment, staring at him, that I knew this was what I was meant for. My life started that day. Knowing that my child was going to soon breath on his own, my life started. I was all in.
After 7 days of being on meds, they started weaning him off. He was breathing over the oxygen machine, and they were slowly weaning him off of that. He was breathing from his trach. His life was starting. Soon after that, we were able to hold him. We were a trach pfamily. We all had to learn the ins and outs of caring for a trach baby. Trach care, trach change, trach cpr, trach supplies, trach machines... everything you thought you would NEVER need to know, well, we know it all now.
It was on this day, September 23, God gave ME life.
Its been a year of living with a trach. Its been one hell of a ride, and its not stopping us. We are a normal trach pfamily.
Happy 1 year of trach life my little bear. You have been such a joy! We love watching your every move. You keep us all smiling and laughing. Your little "squeaks" that you make light up our lives. I can't imagine life any other way. This is it, and this is us.
http://www.gofundme.com/58c7p4
- S
Sunday, September 23, living in all the glory of single girl - sunday funday on west 6th in Austin, my life was soon about to change. While quickly playing a game of skee ball at a local spot, by myself, waiting for my friend to pay the tab, he walked up to me and challenged me to a game. I laughed and quickly accepted. I won. He challenged me again, this time for lunch. I won...again. At that moment, my girlfriend - Amanda, ran up to me and shouted that "we needed to leave NOW", we were going to be late for our skee ball league game, at a different bar. (don't judge me for being in a skee ball league, it was fun, and yes, there really is a skee ball league) I almost ran out of there with out speaking another word to him, but was stopped, and he asked for my number to take me to the lunch I had won. "Here's my number, call me, maybe". After 2 weeks of texting/talking while he was away on a work trip, we finally met up for another sunday funday and lunch. The rest is history. On that day, September 23, God knew that placing us both in the same spot, our lives would never be the same. He gave me a life that I could never dream of. He knew that one day, we would be the parents to this special angel that he was creating. Only he knew what he was doing on that Sunday - by the way, I thought God rested on Sundays.... however, that mans work is NEVER done.
(weird that as I write this, one of Gabes favorite songs comes on my pandora...YES God, I am listening)
Fast forward....
Monday, September 23, my child lays in the NICU at Dell Childrens, waiting for the MOST important surgery of his short little 2 weeks of life. He lays there peacefully sleeping, intubated to help him breath. I have never seen his whole face. He has been tubbed and taped and wired since the first minutes of life. Today would be the day that I tried to talk the doctors out of. It wasn't the normal - go to the hospital and hold him all day, kind of day. I got there 3 hours earlier than usual to get my cuddle time in, knowing I wouldn't be able to for 7 days. "I know there is a different way to get him to breath, he doesn't need a trach" I said. For 2 weeks, I selfishly fought with the doctors about a trach. I couldn't wrap my head around the fact that our lives would not be "normal" "NO, I don't want to see what a trach looks like on a DOLL" this is my child...he is not a doll!! "NO, I don't want to talk to other parents who have been through this" this is us, not them. Finally, the doctors said I was making it worse by not doing this. The tubes could potentially harm him. He needs this. Our families all came in. We all prayed. We all cried. I was sobbing... like the ugly "Kim Kardashian"crying. I couldn't contain my emotions. I couldn't understand why this was happening. My child. My 2 weeks old baby was being wheeled away in a tiny little incubator. Wrapped up so innocently. His big peaceful eyes staring at me through the window. Not knowing what was happening.
We waited for about 2 hours for his cranial facial dr to come out of surgery and tell us that our option of carving out his nose holes (his little nose holes are closed) was not going to happen, and he in fact was getting a trach today. The ENT was about to start. My world was closing in. I cried for another 2 hours. I was so hopeful that there was another option. But this was it. Our fate was a trach baby. God knew what he was doing. He was giving us life.
After about 5 hours of surgery, we were finally able to see B. They warned us about what we would see. He was going to be COMPLETELY sedated and paralyzed for 7 days. There was to be NO movement from him so the trach could stay in place. I walked in to see his face. No tape, no tubes, no wires. His cute little chin, his perfect lips. His cute little face. He was free. I walked in to a life less child. He lay there still as can be. He was pale. It was the most horrific sight. I just wanted to hold him and cuddle him, but all I could do was stare at his amazing beautiful face. It was at that moment, between the tears, that I realized "God gave me life". He gave me a life that I could never imagine I would have as a parent. It was at that moment, staring at him, that I knew this was what I was meant for. My life started that day. Knowing that my child was going to soon breath on his own, my life started. I was all in.
After 7 days of being on meds, they started weaning him off. He was breathing over the oxygen machine, and they were slowly weaning him off of that. He was breathing from his trach. His life was starting. Soon after that, we were able to hold him. We were a trach pfamily. We all had to learn the ins and outs of caring for a trach baby. Trach care, trach change, trach cpr, trach supplies, trach machines... everything you thought you would NEVER need to know, well, we know it all now.
It was on this day, September 23, God gave ME life.
Its been a year of living with a trach. Its been one hell of a ride, and its not stopping us. We are a normal trach pfamily.
Happy 1 year of trach life my little bear. You have been such a joy! We love watching your every move. You keep us all smiling and laughing. Your little "squeaks" that you make light up our lives. I can't imagine life any other way. This is it, and this is us.
http://www.gofundme.com/58c7p4
- S
Wednesday, September 3, 2014
Every course has an obstacle
Its been such a long, almost year of a journey...speaking of Journey, who doesn't love the song "Don't Stop Believing"...its such a great song. It also happens to be the song of our life for the past 2 days.
It's no surprise that when you have a medically dependent child, that you will run into problems. Problems with everything. But when you do run into a problem, it seems to hit you straight in the heart, when you least expect it.
Our newest problem came from a phone call that I received yesterday, and then another one today.
Cincinnati Children's Clinic - Airway Specialist has been on our radar for quite some time. Back in June, we were finally able to get in contact with them and Brody's case was presented to the board there. They presented 120 cases that day. This is the trachea mecca of the world. If you have an airway issue, this is who you want to go see. I was so excited when we got the phone call letting us know that the "board" accepted us. It was such a blessing, and at that moment I felt a rush come over me. Like, I knew it was all going to be ok, and we were going to find a way to get Brody through this.
Yesterday I got a phone call from the Cincinnati clinic letting us know that Medicaid has denied the visit because it isn't medically necessary by their standards to go see them. WHAT?? You have got to be kidding me. I was told to hold tight, because we still had Tri Care to approve it. Today, I got the phone call that Tri Care also denied it for medical necessity. D.E.N.I.E.D.... I have never felt so heart broken. What do you mean NOT MEDICALLY NECESSARY. He is number 13 in the WORLD with this. He is currently only the 3rd person still alive with this issue. I have the research. This is necessary! His life is my life. I'm heart broken. I'm back at square one. Back at the beginning of our Pfight. I'm sad... period. It is not NECESSARY?? I'm sorry, but if it was their kid, it would be necessary!!! That's all I have to say about that. I WILL get B to Cincinnati if its the last thing I do. How? I'm not sure yet. But I WILL!! I have gotten in contact with Dr's for letters so that I can start the appeal process, but if you know anything about insurance, you know its going to be a battle.
But if there is anything that I have learned from Bear in this last year, its to pfight, and not to stop pfighting and having faith!
Hoping that the appeals work.
Right now I'm sad, lost, and confused, but every course has an obstacle.... I will beat this one.
http://www.gofundme.com/58c7p4
Keeping the faith,
-S
It's no surprise that when you have a medically dependent child, that you will run into problems. Problems with everything. But when you do run into a problem, it seems to hit you straight in the heart, when you least expect it.
Our newest problem came from a phone call that I received yesterday, and then another one today.
Cincinnati Children's Clinic - Airway Specialist has been on our radar for quite some time. Back in June, we were finally able to get in contact with them and Brody's case was presented to the board there. They presented 120 cases that day. This is the trachea mecca of the world. If you have an airway issue, this is who you want to go see. I was so excited when we got the phone call letting us know that the "board" accepted us. It was such a blessing, and at that moment I felt a rush come over me. Like, I knew it was all going to be ok, and we were going to find a way to get Brody through this.
Yesterday I got a phone call from the Cincinnati clinic letting us know that Medicaid has denied the visit because it isn't medically necessary by their standards to go see them. WHAT?? You have got to be kidding me. I was told to hold tight, because we still had Tri Care to approve it. Today, I got the phone call that Tri Care also denied it for medical necessity. D.E.N.I.E.D.... I have never felt so heart broken. What do you mean NOT MEDICALLY NECESSARY. He is number 13 in the WORLD with this. He is currently only the 3rd person still alive with this issue. I have the research. This is necessary! His life is my life. I'm heart broken. I'm back at square one. Back at the beginning of our Pfight. I'm sad... period. It is not NECESSARY?? I'm sorry, but if it was their kid, it would be necessary!!! That's all I have to say about that. I WILL get B to Cincinnati if its the last thing I do. How? I'm not sure yet. But I WILL!! I have gotten in contact with Dr's for letters so that I can start the appeal process, but if you know anything about insurance, you know its going to be a battle.
But if there is anything that I have learned from Bear in this last year, its to pfight, and not to stop pfighting and having faith!
Hoping that the appeals work.
Right now I'm sad, lost, and confused, but every course has an obstacle.... I will beat this one.
http://www.gofundme.com/58c7p4
Keeping the faith,
-S
Tuesday, August 19, 2014
Just for a moment, LET'S BE STILL
Every morning, I walk down the stairs to go to work, and my bright little shinning light is sitting on the floor, with the biggest smile, the happiest heart, and clapping hands. Its the best start to my morning! He gets SOOOO excited to see me, and it melts my heart, EVERY.SINGLE.MORNING. So, today as I walked out of the house with my melting heart, and big smile, it slowly started to fade into tears. I couldn't help but lose it on my way to work. Knowing that tomorrow he will go in for his 6th surgery in 11 1/2 months, breaks my heart. It breaks because he has NO IDEA what is coming. For all he knows, he's gonna wake up to his nurse and have the same smile waiting for his momma and daddy when they comes down the stairs, and he will have another normal fun day at home. But the truth is, that's not what is gonna happen. He's gonna wake up to yet ANOTHER early trip to his "hotel"aka - Dell Childrens hospital, get some lovin from momma, daddy, grandparents, and aunties, and then go down for a "nap". He will wake up after 8 hours of sleep, and not know what hit him. My heart breaks, because he doesn't understand why. He doesn't understand that I DONT WANT THIS ANYMORE. He doesn't understand that I AM NOT DOING THIS BY CHOICE....it has to be done baby boy! I know he won't remember any of it, and THANK GOD FOR THAT.... I don't want him holding grudges against me....my heart hurts enough.
I lose sleep in the days leading up to surgery. I lose smiles. I gain strength (but don't know it at the time) but the worst thing, is that I lose patience. I of all people - the most patient one of my family. I lose it. I get anxiety. My baby, my heart. The one I carried inside of me for 10 months. He is taken from my hands by the surgery team, and returned to me with tubes and wires, and doped up on meds. I HATE this. He will lay still for hours, for DAYS. The doctor says after day 2 when the swelling sets in, his eyes will be SWOLLEN SHUT. His words hurt my heart even more, but I know he wants me to be prepared. His words sting when he says that, "He will look different after this surgery. We will not freak out when we see the swelling, because we know its coming" Its like some one is preparing you for that knife to stab you in your heart. You just need to know that its gonna be bad... its gonna be hard. He's going to be cranky for a couple of days because he won't be able to open his eyes. My bright little light. He won't be shinning for momma. Momma has to shine for him, and I feel helpless. I feel dull. How can I possibly get through this again. I will. I have to. For him.
This surgery is big like the last one. Aprox. 8 hours. They will reshave the hair on his head. Reopen his zig zag scar from ear to ear. Take the distractors from the last surgery out. They will cut the top part of his skull and reshape it and fix the top of his head. They will fix the little bulge on the sides. And they will move his forehead forward. Whew... I hurt just thinking about it. The "hotel" stay (Im tired of saying HOSPITAL) will be another 5-7 days. Gabe and I will sleep on the pull out bed. I will sit by B's side and wait for his light to be bright. To be Happy. To be him. However long it takes. I will wait. I need his bright light to calm my heart.
I write this, and my favorite song comes on. "Lets be still" by The Head and the Heart. Which I find funny, because here I am talking about his head and my heart. And as I listen and write, I take away this. Lets be still. Just for a moment. Live in the day. Don't be anxious. Be still. I will enjoy today with him. I will hold him. I will love on him, extra! I will be still. Be still my heart. Let the world stop turning just for a moment.
Tomorrow when I wake up to the moon still out, I will turn on my light, so that I shine for him. But today, I will savor every minute of his happy, bright shinning, little soul. It will warm my heart, and I will carry it with me and hold on to it. And I know he will be back in my arms soon.
I pray for the doctors and the nurses. I pray for steady, knowledgeable hands. I pray for Brody to fall asleep with his Angels by his side and to wake up with their gentle touch. I pray for his anesthesiologist. To help him breath. To keep him from feeling any pain. I pray for Gabe and I to be strong for each other. I pray for my heart to be strong for everyone. I know that Gabe needs me too. I pray that I can comfort him in his hurt. I pray for his Angels to carry him through. I pray. I cry. I pray some more.
http://www.gofundme.com/58c7p4
With a hurting heart,
-S
I lose sleep in the days leading up to surgery. I lose smiles. I gain strength (but don't know it at the time) but the worst thing, is that I lose patience. I of all people - the most patient one of my family. I lose it. I get anxiety. My baby, my heart. The one I carried inside of me for 10 months. He is taken from my hands by the surgery team, and returned to me with tubes and wires, and doped up on meds. I HATE this. He will lay still for hours, for DAYS. The doctor says after day 2 when the swelling sets in, his eyes will be SWOLLEN SHUT. His words hurt my heart even more, but I know he wants me to be prepared. His words sting when he says that, "He will look different after this surgery. We will not freak out when we see the swelling, because we know its coming" Its like some one is preparing you for that knife to stab you in your heart. You just need to know that its gonna be bad... its gonna be hard. He's going to be cranky for a couple of days because he won't be able to open his eyes. My bright little light. He won't be shinning for momma. Momma has to shine for him, and I feel helpless. I feel dull. How can I possibly get through this again. I will. I have to. For him.
This surgery is big like the last one. Aprox. 8 hours. They will reshave the hair on his head. Reopen his zig zag scar from ear to ear. Take the distractors from the last surgery out. They will cut the top part of his skull and reshape it and fix the top of his head. They will fix the little bulge on the sides. And they will move his forehead forward. Whew... I hurt just thinking about it. The "hotel" stay (Im tired of saying HOSPITAL) will be another 5-7 days. Gabe and I will sleep on the pull out bed. I will sit by B's side and wait for his light to be bright. To be Happy. To be him. However long it takes. I will wait. I need his bright light to calm my heart.
I write this, and my favorite song comes on. "Lets be still" by The Head and the Heart. Which I find funny, because here I am talking about his head and my heart. And as I listen and write, I take away this. Lets be still. Just for a moment. Live in the day. Don't be anxious. Be still. I will enjoy today with him. I will hold him. I will love on him, extra! I will be still. Be still my heart. Let the world stop turning just for a moment.
Tomorrow when I wake up to the moon still out, I will turn on my light, so that I shine for him. But today, I will savor every minute of his happy, bright shinning, little soul. It will warm my heart, and I will carry it with me and hold on to it. And I know he will be back in my arms soon.
I pray for the doctors and the nurses. I pray for steady, knowledgeable hands. I pray for Brody to fall asleep with his Angels by his side and to wake up with their gentle touch. I pray for his anesthesiologist. To help him breath. To keep him from feeling any pain. I pray for Gabe and I to be strong for each other. I pray for my heart to be strong for everyone. I know that Gabe needs me too. I pray that I can comfort him in his hurt. I pray for his Angels to carry him through. I pray. I cry. I pray some more.
http://www.gofundme.com/58c7p4
With a hurting heart,
-S
Tuesday, July 22, 2014
Make the decision to just BE...
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
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
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
Thursday, June 26, 2014
A busy life is a normal life....right?
A couple of weeks ago, our pediatrician recommended that we go to a clinic called Austin First Steps. Its a place where they follow and track your child's development. They mostly do premie babies, but because Brody is such an AWESOME case, they wanted to follow him as well. It was a 2 hour apt, and Brody showed them who was boss. It was so funny to watch him. One thing that the Dr. did was, pick up a bell and ring it and then she set it down in front of him to see what he would do. With out hesitation, B grabbed that bell and gave it a nice couple of rings...and looked at the Dr and with his eyes, he silently told her "now what, lady" and then started banging the bell on the table. I wish everyone could've been a fly on the wall, because I really am not bragging. I was just so surprised he was doing all these little tricks and milestones. So after discussion and play time with the Dr. his test results came back as NORMAL. That means, he is doing everything a 9 month old should be doing. The only thing that was below average, was his speech and gross motor skills. We knew speech would be, well, because he has a trach and doesn't make noise or eat. And his gross motor was because after his skull surgery, they put him on "rolling over and tummy time restriction" so he lost most of his arm strength. Our physical therapist has been working with him, since we got the go-ahead a couple of weeks ago, and he has been slowly regaining his strength. With all that being said, my heart smiled and a sigh of relief was released. It takes a huge part out of you knowing that your baby is different, but knowing that he is on track, just fills me with a sort of feeling that is hard to describe.
Another topic of discussion was his feeding and calorie intake. Bottom line is, this milk factory is slowly but surely drying up, and Im so sad about this. I still pump 5x a day and am trying my hardest to keep it going, but its just not happenin. They want him to be getting about 260 mls of breast milk 4x a day but I'm only making about 150mls every pump. So the conclusion was to supplement the missing milk with formula. While that wasn't my first choice, I am ok with it. I don't feel the pressure and stress of trying to make enough milk, and I know he is still getting the majority of breast milk. He has been doing very well with our speech therapist and eating baby food much much better. All I can ask for is progress and he is doing just that. He is pushing through and pfighting on.
With all this excitement and progress, we thought it might be time to start introducing him to more kids and more play time. Besides from the occasional visits from Gabe's niece and nephew, he has had a couple of play dates with his "cousin" Southern and his cousin Gabriel (who are both about a year or so older), while us adults were visiting, but other than that, he has never been around other kids his age. I thought that maybe taking him to Gymboree play groups would really get him on a whole new level of learning. I looked into classes and they had a "first class free" pass, so I signed us up and took him yesterday.
My mom drove in from SA to go with us and capture his big moment. I am not really sure how to explain how he did. I don't know if he was just extremely tired from therapy and not napping, or if he was just in shock from the different atmosphere. There were 3 other kids ranging from 7-9 months. And Brody just had this blank stare on his face like "WHAT IN THE WORLD IS THIS PLACE". We sang and clapped, and stomped our feet. Worked on crawling and moving, and playing soccer. Bubbles were blown and the parachute was flown. But still the same ole blank stare came from him. It wasn't until we were finished putting our shoes back on and walking out the door, when his smile came back and he was clapping his hands. So I guess he was excited to leave. Little stinker! The kind teacher offered another free class next week, to try it out again. Hopefully with a nap before, he will be a little more excited and involved! We shall see.
Here are a few videos of what we did.
Another topic of discussion was his feeding and calorie intake. Bottom line is, this milk factory is slowly but surely drying up, and Im so sad about this. I still pump 5x a day and am trying my hardest to keep it going, but its just not happenin. They want him to be getting about 260 mls of breast milk 4x a day but I'm only making about 150mls every pump. So the conclusion was to supplement the missing milk with formula. While that wasn't my first choice, I am ok with it. I don't feel the pressure and stress of trying to make enough milk, and I know he is still getting the majority of breast milk. He has been doing very well with our speech therapist and eating baby food much much better. All I can ask for is progress and he is doing just that. He is pushing through and pfighting on.
With all this excitement and progress, we thought it might be time to start introducing him to more kids and more play time. Besides from the occasional visits from Gabe's niece and nephew, he has had a couple of play dates with his "cousin" Southern and his cousin Gabriel (who are both about a year or so older), while us adults were visiting, but other than that, he has never been around other kids his age. I thought that maybe taking him to Gymboree play groups would really get him on a whole new level of learning. I looked into classes and they had a "first class free" pass, so I signed us up and took him yesterday.
My mom drove in from SA to go with us and capture his big moment. I am not really sure how to explain how he did. I don't know if he was just extremely tired from therapy and not napping, or if he was just in shock from the different atmosphere. There were 3 other kids ranging from 7-9 months. And Brody just had this blank stare on his face like "WHAT IN THE WORLD IS THIS PLACE". We sang and clapped, and stomped our feet. Worked on crawling and moving, and playing soccer. Bubbles were blown and the parachute was flown. But still the same ole blank stare came from him. It wasn't until we were finished putting our shoes back on and walking out the door, when his smile came back and he was clapping his hands. So I guess he was excited to leave. Little stinker! The kind teacher offered another free class next week, to try it out again. Hopefully with a nap before, he will be a little more excited and involved! We shall see.
Here are a few videos of what we did.
Using the walking cylinder
We got our own bubble to pop
Trying to get him to crawl up the ramp....not happen' mom
(sorry for the quality of the videos, I am trying to work on them)
Also on our exciting agenda of trying to be "normal", is our first family trip to the beach, in July. We attempted to go to the beach a couple of weeks ago while visiting my aunt and uncle in Galveston, but matter of the fact is, we were total house bums and just enjoyed being on their deck on the bay. But this time, Gabe's parents and my parents are taking him to the actual beach at South Padre. We are going for Gabe's cousins wedding, but making it a long weekend of family time before Gabe's busy work travel season ensues. While I am FREAKING out about the mixture of sun, sand and a trach, I am trying everything to remain positive. Im sure it will be better than I am imagining, and while I am excited about family time and putting his feet in the sand for the first time, other things are going through my head. So I guess its time to start making our supply packing list, and getting things together.
One of his beach outfits from Grandma
Wish us luck.
Much love to you all, and hope everyone is having a busy normal summer!!!
Love,
-S
Thursday, June 5, 2014
The fear of the "unknown"
There is a lot that goes into being a trach baby Pfamily. There is equipment, monthly supplies/organizing, daily cleanings, weekly trach changing, nursing care, emergency supplies EVERYWHERE, travel equipment that goes everywhere you go and of course, suctioning secretions as often as needed. Brody is not one that needs a lot of suctioning. Think of it as blowing your nose. Some people do it all day every day. Some, in the morning when they wake up. Some, only when they are sick. Well same goes for a trach baby, and suctioning is like "blowing his nose" and Brody falls into the "when you wake up" category. He usually has really icky secretions in the morning when he wakes up, and thats it. During the day, we maybe suction him once or twice, and usually NEVER in the middle of the night.
Tuesday during the day, he just wasn't himself. He was fussy. My mom was here for her weekly visit, and that usually involves lots of cuddle time. When I called to check in from work, she said that he had been asleep in her arms for over an hour!! He never takes that long of a nap. When I got home, about 2 hours later, he was ready for another nap and just cranky. We chalked it up to teething, because he was also drooling like there was no tomorrow. Then, later that night, he started spitting up his food. I knew from there it was going to be a LLLLOOONNGGGGG night. And sure enough, I got up about 3 or 4 times because I heard him having difficulty breathing through the monitor, and his secretions were horrible, every time.
Needless to say, it has not been a good 2 days. His secretions are so think and green, his cough is horrible, and for the first time since being born, he is needing the oxygen machine at home to help him breathe.
Then it got me thinking... What if this is the "trachea sleeve" issue. Is this what happened to the other 12 kids that had this issue? Is his trachea going to collapse? Is it closing? Is this the "unknown"? The fear has me so worked up. Being 1 of 13 in the world with the "trachea sleeve" means that there is not much literature on what happens. We have no signs to look for, other than difficulty breathing.
Im scared.
We took him in to the doctor yesterday and his diagnosis was 1. Ear infection 2. Respiratory infection 3. Tracheitis (inflamation of the trachea). He is on a pedialite diet, because he cant keep food down, (which means I can build my milk stash up some more...bonus for me) and like I said earlier, he is using the oxygen machine at home to help him breath. He is also getting albuterol treatments every 4 hours. His oxygen stats are ALWAYS 99-100, but they have been in the low to mid 90's, which means he is working extra hard to breathe, aka difficulty breathing! My heart has been racing for 2 days, and Im trying to keep calm. But the fear of the unknown is taking over, and now I am getting sick. I went to bed at 8pm yesterday. And just feel mentally and physically run down. All I want to do is hold my baby. Im so sad for him. And wish I could take his place.
I pray that this will pass quickly and that Im over thinking the situation. But with out knowing what actually happens, the only thing left for my mind to do is wonder.
I think it may actually be time to go to Cincinnati or Chicago and see the trachea experts and get a second opinion or try to find some kind of answer! Or, do I want to know what happens?
But for now, all I can do is pray, and give him extra love. Lots and lots of hugs and kisses.
http://www.gofundme.com/58c7p4
Till next time,
-S
Tuesday during the day, he just wasn't himself. He was fussy. My mom was here for her weekly visit, and that usually involves lots of cuddle time. When I called to check in from work, she said that he had been asleep in her arms for over an hour!! He never takes that long of a nap. When I got home, about 2 hours later, he was ready for another nap and just cranky. We chalked it up to teething, because he was also drooling like there was no tomorrow. Then, later that night, he started spitting up his food. I knew from there it was going to be a LLLLOOONNGGGGG night. And sure enough, I got up about 3 or 4 times because I heard him having difficulty breathing through the monitor, and his secretions were horrible, every time.
Needless to say, it has not been a good 2 days. His secretions are so think and green, his cough is horrible, and for the first time since being born, he is needing the oxygen machine at home to help him breathe.
Then it got me thinking... What if this is the "trachea sleeve" issue. Is this what happened to the other 12 kids that had this issue? Is his trachea going to collapse? Is it closing? Is this the "unknown"? The fear has me so worked up. Being 1 of 13 in the world with the "trachea sleeve" means that there is not much literature on what happens. We have no signs to look for, other than difficulty breathing.
Im scared.
We took him in to the doctor yesterday and his diagnosis was 1. Ear infection 2. Respiratory infection 3. Tracheitis (inflamation of the trachea). He is on a pedialite diet, because he cant keep food down, (which means I can build my milk stash up some more...bonus for me) and like I said earlier, he is using the oxygen machine at home to help him breath. He is also getting albuterol treatments every 4 hours. His oxygen stats are ALWAYS 99-100, but they have been in the low to mid 90's, which means he is working extra hard to breathe, aka difficulty breathing! My heart has been racing for 2 days, and Im trying to keep calm. But the fear of the unknown is taking over, and now I am getting sick. I went to bed at 8pm yesterday. And just feel mentally and physically run down. All I want to do is hold my baby. Im so sad for him. And wish I could take his place.
I pray that this will pass quickly and that Im over thinking the situation. But with out knowing what actually happens, the only thing left for my mind to do is wonder.
I think it may actually be time to go to Cincinnati or Chicago and see the trachea experts and get a second opinion or try to find some kind of answer! Or, do I want to know what happens?
But for now, all I can do is pray, and give him extra love. Lots and lots of hugs and kisses.
http://www.gofundme.com/58c7p4
Till next time,
-S
Friday, May 9, 2014
A HAPPY blog for Moms, Bear, and updates.
I have been writing trying to write a post for 2 weeks now. This is the 3rd one I have started, and I WILL complete it! There are so many things to write about, so hopefully I don't ramble on and on.
First things first.
HAPPY MOTHERS DAY! I realize that it is in 2 days, but I just wanted to give a shout out to all the mothers, grandmothers, GODmothers, aunts, dad-mothers, and so on. I give props to all of you out there. I have learned so much these past 17 months ( 9 preggo months and 8 months with a child). Being a mom means so much more than just birthing a child. I have learned how to love WHOLE heartedly, given more to him than I have ever given any one, and cried for him more than I have ever cried for anything. I have learned what it is to truly fight for someone, to really pray and believe in the power of prayer. My son has changed my life in so many ways. And not only do I get to sit back and celebrate my first official Mothers day for me, I celebrate it for my mom, a first time GRANDMA, some one who has given every possible free minute to be here for us. She has driven thousands of miles in the past 8 months to be by our side. She has cried, cheered, prayed and laughed with me EVERY day since September 9! She is the person who has taught me HOW to be a mom. I could never repay her for what she has done for us, and the countless amounts of powered doughnuts she has brought to me to make me happy and feel better! My sister, B's GODmother, and #1 aunt. She too has given every ounce of love to our little Bear. She has taken on the role of #1 spoiler, and I don't see it coming to an end any time soon. She has hidden her tears from me, so she could be strong for me, in the time when I was at my lowest, and she has cheered us on every second of the way.
I could go on and on about ALL the amazing women in my life, who have been there for us every second of the way, but I have other things to write about. So, today, I leave all you loving women in our life with this quote and thank you from the bottom of my heart:
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First things first.
HAPPY MOTHERS DAY! I realize that it is in 2 days, but I just wanted to give a shout out to all the mothers, grandmothers, GODmothers, aunts, dad-mothers, and so on. I give props to all of you out there. I have learned so much these past 17 months ( 9 preggo months and 8 months with a child). Being a mom means so much more than just birthing a child. I have learned how to love WHOLE heartedly, given more to him than I have ever given any one, and cried for him more than I have ever cried for anything. I have learned what it is to truly fight for someone, to really pray and believe in the power of prayer. My son has changed my life in so many ways. And not only do I get to sit back and celebrate my first official Mothers day for me, I celebrate it for my mom, a first time GRANDMA, some one who has given every possible free minute to be here for us. She has driven thousands of miles in the past 8 months to be by our side. She has cried, cheered, prayed and laughed with me EVERY day since September 9! She is the person who has taught me HOW to be a mom. I could never repay her for what she has done for us, and the countless amounts of powered doughnuts she has brought to me to make me happy and feel better! My sister, B's GODmother, and #1 aunt. She too has given every ounce of love to our little Bear. She has taken on the role of #1 spoiler, and I don't see it coming to an end any time soon. She has hidden her tears from me, so she could be strong for me, in the time when I was at my lowest, and she has cheered us on every second of the way.
I could go on and on about ALL the amazing women in my life, who have been there for us every second of the way, but I have other things to write about. So, today, I leave all you loving women in our life with this quote and thank you from the bottom of my heart:
Being a Mother doesn't mean being related to someone by blood. It means loving someone UNCONDITIONALLY and with your whole heart!
Next thing on the agenda...
HAPPY 8 months to this little pfighter we call Bear, aka Brody. Wow, where has the time gone? He has grown so much and is doing exceptionally well! We are still a little behind on some goals, but I am not as stressed about it as I was. I know he has been through so much these past couple of months, and while he is still making huge progress, I know he still needs time to recover and get back on track. He has started with a couple of new things, like clapping, saying NO (uugghh has this really started?) and rolling over on both sides. He has 4 teeth now and is a slobberin sammy! We are still trying SOOOO hard to get him to eat by mouth, but for now he still has this milk factory running 5 times a day! (BUT Im totally ok with the extra burnt calories from it) We got him a big boy high chair and some little food toys, so hopefully he gets the hang of it soon. He is 18lbs now! Big Boy! And super long (not sure of the inches). He is the happiest little piece of sunshine despite all he has been through.
And last but not least, his 2 week post op from skull surgery.
The past 2 weeks have been such a roller coaster of emotions! And lot of lost sleep for all of us! Brody has truly shown what a pfighter he is! He has bounced back from surgery like a little champ and is doing so well. Its been a long 2 weeks of medicine weening, fighting sleep, breaking out of arm restraints, trying to tell him he cant grab his head and no more rolling over! Its been a hell of a pfight, but well worth it. He has these two little metal arms coming out the side of his head that Gabe and I have to turn 2x a day with a little special screw driver. It doesn't seem to bother him to much, and for the most part, he only pfights it when we go in for his weekly check ups. I think he is starting to associate that a "white coat" = lots of pain. Gabe and I will have to turn the screws 1mm a day for 30 days which will be a total of 30mm. After the 30 days, we will see how much his skull has shaped and wait for 2 months for the bone to totally heal. After those 2 months, which will be the end of July, the doctors will go back in and remove the distraction device. At that point, they will probably do yet ANOTHER surgery, on the top of his skull, and we will be back to square 1. OYE VEY. Another surgery, another hospital stay, another ride on the emotional roller coaster. But for now, we have our weekly check ups with the craniofacial team, and our daily prayers that he heals like a champ. So far everything is looking good and we couldn't be happier with his progress. We have all noticed that his skull is starting to have a round shape, his eyes are not as bulgy, and the top of his head has gone down. That means his brain has room to grow and is now able to grow like it should. It's a day at a time, but we are still learning to pfight as we go! For now, he just keeps us laughing and on our toes.
I learned a new trick, so here is our story in pictures.
This is the back of his skull right after surgery. All those holes, are missing bone! Because there was so much pressure building up in his head from his brain growing, the bone was eroding away. Now that his brain will have room to grow, all that bone will regrow on its own. Its truly amazing how the body works!
My little Bear the morning of his surgery. We had to put his bear outfit on, its like his super man costume. SUPER BEAR!! Poor little buddy had no idea what was about to happen
Daddy and Bear. The purple gown is his pre-op heating gown. They attach a little blower to it and it heats up and keeps him warm. Oh technology these days! Ironic that its a bear gown?? I think NOT!!
I hope NO parent ever has to see their child like this.
He had his first hair cut in a way I never imagined it would be.
OH happy baby to be at home. You can see his new little "metal arms" on the sides of his head.
So happy Mothers day, happy 8 months, happy almost summer time... and just happy happy happy EVERYTHING!! If he can be happy... you have NO reason NOT to be!!!
Much love,
-S
Monday, April 21, 2014
Birthday Wishes...
Growing up, birthdays were always so special. We have AWESOME parents that ALWAYS made us feel so amazing on our special day. From delivering flowers and balloons to school, birthday presents of all sorts, and dinner and dessert fit for a princess, it was like it was there way of saying "I thank God for YOU!" Birthday wishes were always my favorite. It was a way of saying, this is a start of a NEW year of life for me and this is what I hope happens. But growing up, wishes were always about, toys, money, and material things.... but my 31st wish was completely different. I am no longer wishing for a free bag of money, or a the most exquisite gifts there are. This year, I had my baby boy sitting on my lap as I took a deep breath, made my wish, and blew. But this year, my wish was for my baby boy. I'm wishing for a long long HEALTHY life.
Ever since I can remember, I have always been a birthday brat. I would tell everyone a month in advance to get ready for ME... and then on my special day, I would wake up with such joy, and with a glow around me that I could feel myself. I always made sure to enjoy the day to the fullest! This year, I am just not into it. I didn't want this day to come so fast, because it meant that it was the beginning of such a HARD week. A week that I am mentally just NOT ready for. It means that 2 days from now, my baby boy will go in for the longest and probably hardest surgery of his life. I am just not ready for 7am Wed morning. I don't know how to enjoy my self today, knowing that this is coming up, and he will be pfighting through something so difficult. It is no longer about me. My life is about him now, and this is not how I planned it to go. I know Gods plans are greater than mine, but right now, I just cant comprehend that.
Wednesday will hopefully be a day of answers. Answers that I am not sure I can handle. Before they start his skull reconstruction, the ENT will go in and do a broncoscopy (spelling). The will send a tiny little camera down his trachea and tell us how his "trachea sleeve" is developing. Is it closing, is it growing with his body, what is going on in there. Im not sure I am ready. Last week when we were in the office, we spoke about the doctors in Chicago and Cincinnati and possibly contacting them for more answers. So maybe, a trip to one of those 2 cities will be coming up, depending on the news we get wednesday morning.
His skull surgery will last aprox 4-5 hours. Its called a cranial vault remodeling with distraction osteogenesis. He will have metal distractors in his head that Gabe and I will have to manually turn 3 times a day. Really...I have to turn screws in my 7mo old sons head? WHAT? Scratch that.... I don't HAVE too, I GET too. I GET to live this life with him. I was chosen to be his mother, not because I HAD to, but because I GET the chance to. God let him be mine. And I am ok with that. I will pfight through my fears, I will pfight through my tears, and I will embrace the fact that I GET to do this.
Starting this year, my wishes are no longer for my self. They are for HIM.. they are for his pfight. So lets all raise our glasses and cheers to many more birthday wishes that come true.
http://www.gofundme.com/58c7p4
Thank you for all the birthday wishes.
Love,
S
Ever since I can remember, I have always been a birthday brat. I would tell everyone a month in advance to get ready for ME... and then on my special day, I would wake up with such joy, and with a glow around me that I could feel myself. I always made sure to enjoy the day to the fullest! This year, I am just not into it. I didn't want this day to come so fast, because it meant that it was the beginning of such a HARD week. A week that I am mentally just NOT ready for. It means that 2 days from now, my baby boy will go in for the longest and probably hardest surgery of his life. I am just not ready for 7am Wed morning. I don't know how to enjoy my self today, knowing that this is coming up, and he will be pfighting through something so difficult. It is no longer about me. My life is about him now, and this is not how I planned it to go. I know Gods plans are greater than mine, but right now, I just cant comprehend that.
Wednesday will hopefully be a day of answers. Answers that I am not sure I can handle. Before they start his skull reconstruction, the ENT will go in and do a broncoscopy (spelling). The will send a tiny little camera down his trachea and tell us how his "trachea sleeve" is developing. Is it closing, is it growing with his body, what is going on in there. Im not sure I am ready. Last week when we were in the office, we spoke about the doctors in Chicago and Cincinnati and possibly contacting them for more answers. So maybe, a trip to one of those 2 cities will be coming up, depending on the news we get wednesday morning.
His skull surgery will last aprox 4-5 hours. Its called a cranial vault remodeling with distraction osteogenesis. He will have metal distractors in his head that Gabe and I will have to manually turn 3 times a day. Really...I have to turn screws in my 7mo old sons head? WHAT? Scratch that.... I don't HAVE too, I GET too. I GET to live this life with him. I was chosen to be his mother, not because I HAD to, but because I GET the chance to. God let him be mine. And I am ok with that. I will pfight through my fears, I will pfight through my tears, and I will embrace the fact that I GET to do this.
Starting this year, my wishes are no longer for my self. They are for HIM.. they are for his pfight. So lets all raise our glasses and cheers to many more birthday wishes that come true.
http://www.gofundme.com/58c7p4
Thank you for all the birthday wishes.
Love,
S
Thursday, March 27, 2014
The Cries Before The Storm
WOW... its been 2 months since I last wrote. I promise I will be better about this. BUT...things have been SOOOOOOOO AMAZING!! Brody has really out done him self in proving the Dr's wrong. It makes my heart happy that he is THRIVING (as put by his Drs). Every Dr. apt that we have gone to, they have been SHOCKED at how well he is doing, and his little personality. GOD IS AMAZING. We are still working on trying to get him mouth fed, and also working on physical and occupational therapy. Our therapist couldn't be happier with his progress. He loves his paci and his crinkly butterfly and will do just about anything for those two things. My heart is over joyed with all his progress, but sometime I get taken back, and just cry. I cry for EVERYTHING. I cry for him. I cry because he smiles in his sleep when I touch his face or when I close his eyes for him ( part of his syndrome means that he falls asleep with his eyes half way open, but if you close them for him they usually stay closed). I cry when he silently giggles because Im "eating" his tummy or feet. I cry when he just wants to be held and rocked to sleep. I cry because all I can do is SMILE and Thank God for blessing us with the past ALMOST 7 months. 7 months is longer than some of the parents like us got. I cry because my heart hurts to think about that!
This week has been exceptionally hard. This morning has been hard. I think because its raining out side, all I want to do is cry. I see him smiling and it breaks me that he has NO idea what is coming in a month. He's just a happy little soul, and it breaks me inside knowing that he has a SERIOUS surgery coming up.
April is the month. Its the month we start skull reconstruction. And all I want to know is what I DID wrong for MY baby to deserve this. WHY US? WHY DOES BRODY HAVE TO BE PUT THROUGH THIS? HE IS JUST A LITTLE INNOCENT SWEET BOY! I cry because I want to take his place. I want them to cut MY skull open. NOT HIS. I want to take his place. I want him to be sitting on the side lines, watching and waiting. NOT ME. I want to be the one with silence. NOT HIM.
We set the surgery date a couple of weeks ago, and its all I can think about. It stresses me out. But then I see his happy little face, and I let it go. I remember what I told my self in the beginning. "I can't change the past, I can't predict the future, all I can do is live in the moment". So for now, I will live each day to the fullest with him. I will cry for him, I will laugh for and with him, I will LIVE for him. I will PRAY AND PRAY AND PRAY for him. and cry some more.
http://www.gofundme.com/58c7p4
with tears in my heart and in my eyes,
-S
This week has been exceptionally hard. This morning has been hard. I think because its raining out side, all I want to do is cry. I see him smiling and it breaks me that he has NO idea what is coming in a month. He's just a happy little soul, and it breaks me inside knowing that he has a SERIOUS surgery coming up.
April is the month. Its the month we start skull reconstruction. And all I want to know is what I DID wrong for MY baby to deserve this. WHY US? WHY DOES BRODY HAVE TO BE PUT THROUGH THIS? HE IS JUST A LITTLE INNOCENT SWEET BOY! I cry because I want to take his place. I want them to cut MY skull open. NOT HIS. I want to take his place. I want him to be sitting on the side lines, watching and waiting. NOT ME. I want to be the one with silence. NOT HIM.
We set the surgery date a couple of weeks ago, and its all I can think about. It stresses me out. But then I see his happy little face, and I let it go. I remember what I told my self in the beginning. "I can't change the past, I can't predict the future, all I can do is live in the moment". So for now, I will live each day to the fullest with him. I will cry for him, I will laugh for and with him, I will LIVE for him. I will PRAY AND PRAY AND PRAY for him. and cry some more.
http://www.gofundme.com/58c7p4
with tears in my heart and in my eyes,
-S
Friday, January 31, 2014
Slow and Steady Through The Race.
I've never been a runner... I mean NEVER... I have tried and tried and I just cant do it. I maybe last 1-2 miles and then I'm done. I do however envy the life of a true runner. They seem to have learned the lesson of slow and steady finishes the race. They don't jump out ahead full speed, they take their time, enjoy the build up of momentum, and cross the finish line. This is my new life motto, SLOW and STEADY. I won't ever be runner, but I will set our "life pace"... slow and steady.
When Gabe and I learned that we were going to be parents, we talked about the endless possibilities of our future. We didn't find out the sex of baby, and just sat around nightly talking about all the things we were going to to. Fishing, hunting, football watching, for him, and manis, pedis, and ballet for me. We talked about what sports our child would play, what "subject" future baby would excel in, and all the fun stuff that goes with becoming a parent and watching your child grow. We talked about our future travels together and leaving the baby with grandparents. The possibilities of a "FUN" life were endless. But we never talked about the enjoyment of actually hitting milestones. We didn't think that we would ever have to PFIGHT for those milestones. And here we are today. PFIGHTING for every step. Praising him for every milestone.
I'm not going to lie, I do constantly "stalk" my mom friends on facebook to monitor what new "thing" their baby is doing, and then I sit and wonder why Brody isn't at that level. I pray about it, and then it happens. He takes that next step. Its like God has to constantly remind me "slow and steady". I am coming to terms with the fact that we may never be the best. As vain as that sounds, I'm sorry. But what parent doesn't want their child to excel. The most important thing I can tell myself, is that WE WILL GET THERE. WE ARE ON OUR WAY. So with that being said. I was so excited to hear what the Dr. said yesterday. BRODY IS THRIVING!! HE IS DOING AWESOME!! She couldn't be happier with his progress. We do physical, occupational and speech therapy 3 times a week. And they are doing wonders for him. He is grabbing his feet, grabbing his toys, smiling, "silently" laughing, knows momma and daddy, laying on his tummy, rolling over from front to back, and he even wiggles around in his crib at night and wakes up turned completely sideways. His progress is AMAZING. PRAISE THE LORD. OUR PRAYERS ARE WORKING, YALL!! Brody is winning this pfight.
Our past month has been awesome. Our routine is working. Gabe and I have our "team Pfight" mind set, and its thriving. Our nurses have been awesome and a blessing in working with our schedule. I can't thank them enough for coming in at 530am, so that I can work out and work. I went to work part time Monday through Friday, so I can contribute to the "family fund" and pay bills. I feel "normal". It helps me "mentally" to get out of the house and work on myself. I learned that I can't help others with out helping myself. We are all THRIVING.
He turns 5 months in Feb. February is when we discuss his skull surgeries. I am trying to NOT think about this. I don't want to live in the future. We start his surgeries in march. But for now... we are working on his milestones, and knocking everyone of them out of the park. Go Brody GO!!!
Gabe, Brody and I can not THANK YOU ENOUGH for all of your prayers, love and support. It has gotten us through the last 5 months, and I know it will get us through the rest of his months. I ask that you continue to pray for us and for his growing and success in his milestones. For peace with the up coming meetings about his surgeries, and for guidance in our communication with trachea specialist in Cincinnati ( something I'll save for another blog when I get more info).
So for now... what ever Pfight you are going through, remember that slow and steady will get you through. Don't rush it. Just PFIGHT through it.
http://www.gofundme.com/58c7p4
love
-S
When Gabe and I learned that we were going to be parents, we talked about the endless possibilities of our future. We didn't find out the sex of baby, and just sat around nightly talking about all the things we were going to to. Fishing, hunting, football watching, for him, and manis, pedis, and ballet for me. We talked about what sports our child would play, what "subject" future baby would excel in, and all the fun stuff that goes with becoming a parent and watching your child grow. We talked about our future travels together and leaving the baby with grandparents. The possibilities of a "FUN" life were endless. But we never talked about the enjoyment of actually hitting milestones. We didn't think that we would ever have to PFIGHT for those milestones. And here we are today. PFIGHTING for every step. Praising him for every milestone.
I'm not going to lie, I do constantly "stalk" my mom friends on facebook to monitor what new "thing" their baby is doing, and then I sit and wonder why Brody isn't at that level. I pray about it, and then it happens. He takes that next step. Its like God has to constantly remind me "slow and steady". I am coming to terms with the fact that we may never be the best. As vain as that sounds, I'm sorry. But what parent doesn't want their child to excel. The most important thing I can tell myself, is that WE WILL GET THERE. WE ARE ON OUR WAY. So with that being said. I was so excited to hear what the Dr. said yesterday. BRODY IS THRIVING!! HE IS DOING AWESOME!! She couldn't be happier with his progress. We do physical, occupational and speech therapy 3 times a week. And they are doing wonders for him. He is grabbing his feet, grabbing his toys, smiling, "silently" laughing, knows momma and daddy, laying on his tummy, rolling over from front to back, and he even wiggles around in his crib at night and wakes up turned completely sideways. His progress is AMAZING. PRAISE THE LORD. OUR PRAYERS ARE WORKING, YALL!! Brody is winning this pfight.
Our past month has been awesome. Our routine is working. Gabe and I have our "team Pfight" mind set, and its thriving. Our nurses have been awesome and a blessing in working with our schedule. I can't thank them enough for coming in at 530am, so that I can work out and work. I went to work part time Monday through Friday, so I can contribute to the "family fund" and pay bills. I feel "normal". It helps me "mentally" to get out of the house and work on myself. I learned that I can't help others with out helping myself. We are all THRIVING.
He turns 5 months in Feb. February is when we discuss his skull surgeries. I am trying to NOT think about this. I don't want to live in the future. We start his surgeries in march. But for now... we are working on his milestones, and knocking everyone of them out of the park. Go Brody GO!!!
Gabe, Brody and I can not THANK YOU ENOUGH for all of your prayers, love and support. It has gotten us through the last 5 months, and I know it will get us through the rest of his months. I ask that you continue to pray for us and for his growing and success in his milestones. For peace with the up coming meetings about his surgeries, and for guidance in our communication with trachea specialist in Cincinnati ( something I'll save for another blog when I get more info).
So for now... what ever Pfight you are going through, remember that slow and steady will get you through. Don't rush it. Just PFIGHT through it.
http://www.gofundme.com/58c7p4
love
-S
Sunday, January 5, 2014
Keep Calm and Trach On
Happy New Year!! We officially had our first "adventure"or "misadventure", if you will, of the new year. Like I mentioned in the first post, this blog is about the adventures or lack there of, in brining up Brody. Its not always going to be fun, but you just gotta push through.
The thing about having a "medically dependent" child, is that you NEED routine. Its a MUST to be able to handle everything. Its a routine to order medical supplies every month, its a routine to organize, its a routine to keep everything clean, its a routine to visit doctors, but most importantly is a routine to do daily care. But none of the routines are a single person job. It needs to be done as a team. Whether its with Gabe, my mom, the nurse, the dr, or anyone I can recruit…it has to be done. The biggest thing is trach care. Thats a daily routine. Everyday. Clean the area around the trach, change the tie, change the dressing…its a job. A tedious 2 person job. But its our routine. Every saturday is trach change day. One more step added to the daily trach care. Take the trach out and put a clean and sterile one in. Yes, Gabe and I do this every saturday. Every saturday we prepare ourselves for this. We talk each other through each step, and the we do it. We are a team. I pull the old trach out, and he quickly puts the new one in. Every saturday I have to see the hole in my sons throat that is keeping him alive. Its a battle I fight mentally, every saturday. For almost 4 months now, we have been doing this every saturday. The nurses at Dell MADE Gabe and I do this every saturday. We needed to be prepared. Trained. Ready. Our parents watched us, they learned the routine also. We were all ready for this. WE GOT THIS.
This weekend we decided to go to San Antonio due to Gabes step father being in the hospital. He needed to help his mother with some stuff. Brody and I spent the night with my parents on friday so Gabe could get some stuff done and he would come stay with us saturday night when he was done. It was no different. We had to stay in our routine. But this time, my mom took the place of Gabe. No biggie, shes done trach care with me before and rocked it each time. We were ready. Our morning started off great. Brody ate, pooped, got a bath and was ready for his routine. I prepared everything. A new trach, a new trach tie, a new trach dressing, cleaning supplies…and of course, I mentally prepared. I walked my mom through it. We rehearsed. Ok, on the count of 3, mom, you are going to take it out and Im going to put the new one in…Ready…1..2… WAIT…breath stephanie breath… we got this… OK..1…2…3… go…. BOOM… its done. Just like that. He is calm as a clam, and his life support is in place. Now comes the hard part… securing it. While my mom holds the trach in place, I quickly clean the are, put the dressing on, and then the tie. Just like Ive done for the past 4 months….But this time our routine took a different route.
Just as I was about to secure the other side of the tie, Brody coughed, and out came the trach. His gasp for air was heart wrenching. SHIT… what happened... We quickly laid him back down, took the tie off and slipped the trach back in. But I was fighting against his gasp for air… it was a battle between the trach, the open wound, and his gasp for air. The trach and the open wound had a battle. And as the trach went back in, it must've hit a piece of tissue, and out poured the blood. Blood was shooting out of his trach. His air way was open and he was breathing, but he was coughing and crying at the same time…. blood was shooting out all over my mom… my heart was breaking. I was in panic mode. I frooze. My eyes watered with fear. I couldn't move. I dint know what to do. Everything I had been taught was gone. My mom tried to calm me down, hold the trach steady and keep her self together. There was only one thing I could do. I picked up the phone and called 911. But I hung up. I dont know why. 2 seconds later the phone rang and it was 911 asking why I hung up. I told them to send help. Send it now. Blood was still coming out.
4 minutes later, the fire dept showed up. My mom and I were standing there. She was holding the trach in place and I was white as a ghost. Still panicing. Brody was just about calm by now. Breathing. Staring at me in the eyes. It was like he was telling me to "suck it up, get your self together, and finsih this job already". I told the fire dept, that I do this every saturday. For 4 months I have been doing this. Then one guy said this to me "Mom, I hate to say this, but you are more trained in this than we are..you need to just do what you do and finish". "He is breathing, his color is good, he isn't crying, JUST keep calm and finish". So, I did what any mother would do. I finished. I cleaned him up, got new dressing, new tie, and I finished. I made sure it was secure and clean, and it was over. DONE. The bleeding was gone, I suctioned the remaining blood out of his trach and it was done. I picked him up and hugged him. I hugged him like my life depended on it. The paramedics checked his oxygen levels and his heart rate and he was breathing like a champ. Everything was perfect. The paramedics applauded me for "traching" on and finishing. After all…. I am more rehearsed in this than they are.
Thats it. Our routine is complete for the day. There was a minor step added, but we are done. I can't thank my mom enough for her help. For her voice. Her strength.
Today, I am mentally stronger than I was yesterday. Im not saying I don't have a few extra gray hairs, but I am stronger. We as a pfamily are stonger, and our pfight continues.
Routines are not always going to go as planned. Sometimes there are a few curve balls that are thrown at you. It can happen at any time. But you have to be strong. Keep Calm. Pfight on. It will make you stronger. So for now….we will Keep Calm and Trach On.
http://www.gofundme.com/58c7p4
Love
Steph
The thing about having a "medically dependent" child, is that you NEED routine. Its a MUST to be able to handle everything. Its a routine to order medical supplies every month, its a routine to organize, its a routine to keep everything clean, its a routine to visit doctors, but most importantly is a routine to do daily care. But none of the routines are a single person job. It needs to be done as a team. Whether its with Gabe, my mom, the nurse, the dr, or anyone I can recruit…it has to be done. The biggest thing is trach care. Thats a daily routine. Everyday. Clean the area around the trach, change the tie, change the dressing…its a job. A tedious 2 person job. But its our routine. Every saturday is trach change day. One more step added to the daily trach care. Take the trach out and put a clean and sterile one in. Yes, Gabe and I do this every saturday. Every saturday we prepare ourselves for this. We talk each other through each step, and the we do it. We are a team. I pull the old trach out, and he quickly puts the new one in. Every saturday I have to see the hole in my sons throat that is keeping him alive. Its a battle I fight mentally, every saturday. For almost 4 months now, we have been doing this every saturday. The nurses at Dell MADE Gabe and I do this every saturday. We needed to be prepared. Trained. Ready. Our parents watched us, they learned the routine also. We were all ready for this. WE GOT THIS.
This weekend we decided to go to San Antonio due to Gabes step father being in the hospital. He needed to help his mother with some stuff. Brody and I spent the night with my parents on friday so Gabe could get some stuff done and he would come stay with us saturday night when he was done. It was no different. We had to stay in our routine. But this time, my mom took the place of Gabe. No biggie, shes done trach care with me before and rocked it each time. We were ready. Our morning started off great. Brody ate, pooped, got a bath and was ready for his routine. I prepared everything. A new trach, a new trach tie, a new trach dressing, cleaning supplies…and of course, I mentally prepared. I walked my mom through it. We rehearsed. Ok, on the count of 3, mom, you are going to take it out and Im going to put the new one in…Ready…1..2… WAIT…breath stephanie breath… we got this… OK..1…2…3… go…. BOOM… its done. Just like that. He is calm as a clam, and his life support is in place. Now comes the hard part… securing it. While my mom holds the trach in place, I quickly clean the are, put the dressing on, and then the tie. Just like Ive done for the past 4 months….But this time our routine took a different route.
Just as I was about to secure the other side of the tie, Brody coughed, and out came the trach. His gasp for air was heart wrenching. SHIT… what happened... We quickly laid him back down, took the tie off and slipped the trach back in. But I was fighting against his gasp for air… it was a battle between the trach, the open wound, and his gasp for air. The trach and the open wound had a battle. And as the trach went back in, it must've hit a piece of tissue, and out poured the blood. Blood was shooting out of his trach. His air way was open and he was breathing, but he was coughing and crying at the same time…. blood was shooting out all over my mom… my heart was breaking. I was in panic mode. I frooze. My eyes watered with fear. I couldn't move. I dint know what to do. Everything I had been taught was gone. My mom tried to calm me down, hold the trach steady and keep her self together. There was only one thing I could do. I picked up the phone and called 911. But I hung up. I dont know why. 2 seconds later the phone rang and it was 911 asking why I hung up. I told them to send help. Send it now. Blood was still coming out.
4 minutes later, the fire dept showed up. My mom and I were standing there. She was holding the trach in place and I was white as a ghost. Still panicing. Brody was just about calm by now. Breathing. Staring at me in the eyes. It was like he was telling me to "suck it up, get your self together, and finsih this job already". I told the fire dept, that I do this every saturday. For 4 months I have been doing this. Then one guy said this to me "Mom, I hate to say this, but you are more trained in this than we are..you need to just do what you do and finish". "He is breathing, his color is good, he isn't crying, JUST keep calm and finish". So, I did what any mother would do. I finished. I cleaned him up, got new dressing, new tie, and I finished. I made sure it was secure and clean, and it was over. DONE. The bleeding was gone, I suctioned the remaining blood out of his trach and it was done. I picked him up and hugged him. I hugged him like my life depended on it. The paramedics checked his oxygen levels and his heart rate and he was breathing like a champ. Everything was perfect. The paramedics applauded me for "traching" on and finishing. After all…. I am more rehearsed in this than they are.
Thats it. Our routine is complete for the day. There was a minor step added, but we are done. I can't thank my mom enough for her help. For her voice. Her strength.
Today, I am mentally stronger than I was yesterday. Im not saying I don't have a few extra gray hairs, but I am stronger. We as a pfamily are stonger, and our pfight continues.
Routines are not always going to go as planned. Sometimes there are a few curve balls that are thrown at you. It can happen at any time. But you have to be strong. Keep Calm. Pfight on. It will make you stronger. So for now….we will Keep Calm and Trach On.
http://www.gofundme.com/58c7p4
Love
Steph
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