Hey guys. Phew, last night was rough again. How long does one cold last?? I think I would rather have 3 whole hours of sleep than 6 hours of broken sleep. This morning we finally got to have the Occupational Therapist come to our house. I signed up for the "Early Steps" program that is state funded that send the therapists you need to your house. We signed up when he was about 2-3 months old but haven't seen anyone yet because we've been in the hospital. So finally today we saw the OT. We practiced putting him on his tummy by rolling up blankets under his chest so that his trach and G-tube didn't touch anything. She said that was her biggest concern is that he is not getting any tummy time. So we will have to practice tummy time this week. She is supposed to come twice a month but is going to come next week to get back on schedule. We are going to see a nutritionist, too. And supposed to see a nurse, but I don't know. Being a nurse myself really helps, but I guess another brain wouldn't hurt. Just wish the had an EB nurse around here... actually I think I've become an EB nurse myself. I've been told by a little birdie that I need a home health nurse for at night. It is something that Randy and I will think about.... but just a really scary thought. It's not easy trusting people these days... especially with your EB baby. It's something to consider and something I will look into. But don't think I won't kick a nurse to the curb if I don't think she's treating my little angel the very best. Us EB Mommies are tough, you know. We fight hard for our babies.
I know life is not fair, I've heard that all my life... but Tripp's life is really not fair. In fact, it sucks. Poor man is in so much pain all the time and been so fussy and miserable lately because of this stinkin' cold. I just want to SCREAM sometimes! And I know he does does too. I mean, my God... how much can one kid handle? Do you know how it feels when you gag and nothing comes up? Yeah, not a good feeling, right? Well he does that... let's see about 100 times a day. And what about that feeling when you actually DO throw up and it comes up through your nose and all... not good. He does that probably 5-6 times a day. Maybe more some days. Last night we went through 4 shirts AFTER bath time. And it just sucks... there's no other way to put it. As a mom, having to actually GAG your son all day long to get rid of his secretions, is really not an easy thing to do. It can kinda make you go a little crazy after a while. That is why I want to help... I want to do anything I possible can to help new moms (or any mom) who are new to this disease. I would give ANYTHING to know everything I know now when Tripp was born or a month old. If I would have known what I know now, it could have prevented a lot of sores and a lot TON of stress!! I know that my life is no where near "EASY" right now. But I would give anything to be able to find the time out of my busy day to help another Mommy that is going through what I'm going through (or have already went through). It would make me feel so good. I feel so obligated to do that, like it's the reason God gave Tripp to me. The reason He picked ME to be his Mommy. And when Tripp gets old enough (not anytime soon), I want to travel around the country to visit new EB moms and give them all of the help and all of the tips I can possibly give them. Because you know what, no one knows ow to help like another EB mom who has lived it already. When Tripp was born, it was the scariest thing that we have or will ever go through. As new parents (and newly married), Randy and I were confused, shocked, scared, pissed, sad, etc, etc.... There's no way to possibly explain it. You don't want to talk to anyone or listen to what anyone else has to say, because this is YOUR baby. You want to be able to take care of him and know how to fix things. But reality is... You don't. You need help... ALL the help and all the hints and tips that you can possibly get because this disease is SO rare. That's how I'm feeling right now. Because I am hurting, and I am teaching myself to deal with this.. it makes me want to help someone else who is starting out where I was... there is nothing scarier.
SO anyway, my thoughts are, "It has to get better, right?" We can only hope. There's only two things that can happen: it can get better or it can get worse. And if it gets worse, what will we do? DEAL. What else is there to do? GIVE UP? Not a chance. I know that this is a task from God. And it is not an easy one. I'm not going to say that I am positive all the time, because I am certainly NOT. I have horrible days sometimes. I lose my patience sometimes. I lose my temper sometimes. I lose my MIND sometimes.. but that is why I said it is a task from God. He knows that I will have those kind of days, but He also knows that I can deal with it... that after I have my meltdown, I will be okay and I can function to take care of this child. Because if you DON'T have those meltdowns... you will never survive. Because I promise that there is no woman or no mom in this world that can do what I do on a daily basis and not have a meltdown once in a while. You just have to know how to bounce back from it... and that's what's important.
God didn't only give this task to me... He gave it to Randy too (and our both our families). I just want to explain HOW absolutely difficult this is on our marriage. Neither of us asked for this to happen, or could have ever imagined this happening to us. We thought we had the perfect life... just married, bought a house, both had good jobs, now a baby on the way. What else could we ask for? And BAM... God said "Wake up."
And that's right where I ended when he woke up and started choking. So I guess God was pretty much talking to me through myself yesterday. Either that or the devil was saying, "Oh you think it can't be worse, right? I'll show you." Who knows. Which ever it was... all I know is that GOD was the one with me when the emergency happened. I know that for a fact. And that's all that matters.
I love all of you... even you guys that I do not know who are following us and praying for our son. THANK YOU. I can't say it enough.
Just want to show you one thing... this is him in the bed last night? Tell me that's not a good baby??
I know life is not fair, I've heard that all my life... but Tripp's life is really not fair. In fact, it sucks. Poor man is in so much pain all the time and been so fussy and miserable lately because of this stinkin' cold. I just want to SCREAM sometimes! And I know he does does too. I mean, my God... how much can one kid handle? Do you know how it feels when you gag and nothing comes up? Yeah, not a good feeling, right? Well he does that... let's see about 100 times a day. And what about that feeling when you actually DO throw up and it comes up through your nose and all... not good. He does that probably 5-6 times a day. Maybe more some days. Last night we went through 4 shirts AFTER bath time. And it just sucks... there's no other way to put it. As a mom, having to actually GAG your son all day long to get rid of his secretions, is really not an easy thing to do. It can kinda make you go a little crazy after a while. That is why I want to help... I want to do anything I possible can to help new moms (or any mom) who are new to this disease. I would give ANYTHING to know everything I know now when Tripp was born or a month old. If I would have known what I know now, it could have prevented a lot of sores and a lot TON of stress!! I know that my life is no where near "EASY" right now. But I would give anything to be able to find the time out of my busy day to help another Mommy that is going through what I'm going through (or have already went through). It would make me feel so good. I feel so obligated to do that, like it's the reason God gave Tripp to me. The reason He picked ME to be his Mommy. And when Tripp gets old enough (not anytime soon), I want to travel around the country to visit new EB moms and give them all of the help and all of the tips I can possibly give them. Because you know what, no one knows ow to help like another EB mom who has lived it already. When Tripp was born, it was the scariest thing that we have or will ever go through. As new parents (and newly married), Randy and I were confused, shocked, scared, pissed, sad, etc, etc.... There's no way to possibly explain it. You don't want to talk to anyone or listen to what anyone else has to say, because this is YOUR baby. You want to be able to take care of him and know how to fix things. But reality is... You don't. You need help... ALL the help and all the hints and tips that you can possibly get because this disease is SO rare. That's how I'm feeling right now. Because I am hurting, and I am teaching myself to deal with this.. it makes me want to help someone else who is starting out where I was... there is nothing scarier.
SO anyway, my thoughts are, "It has to get better, right?" We can only hope. There's only two things that can happen: it can get better or it can get worse. And if it gets worse, what will we do? DEAL. What else is there to do? GIVE UP? Not a chance. I know that this is a task from God. And it is not an easy one. I'm not going to say that I am positive all the time, because I am certainly NOT. I have horrible days sometimes. I lose my patience sometimes. I lose my temper sometimes. I lose my MIND sometimes.. but that is why I said it is a task from God. He knows that I will have those kind of days, but He also knows that I can deal with it... that after I have my meltdown, I will be okay and I can function to take care of this child. Because if you DON'T have those meltdowns... you will never survive. Because I promise that there is no woman or no mom in this world that can do what I do on a daily basis and not have a meltdown once in a while. You just have to know how to bounce back from it... and that's what's important.
God didn't only give this task to me... He gave it to Randy too (and our both our families). I just want to explain HOW absolutely difficult this is on our marriage. Neither of us asked for this to happen, or could have ever imagined this happening to us. We thought we had the perfect life... just married, bought a house, both had good jobs, now a baby on the way. What else could we ask for? And BAM... God said "Wake up."
And that's right where I ended when he woke up and started choking. So I guess God was pretty much talking to me through myself yesterday. Either that or the devil was saying, "Oh you think it can't be worse, right? I'll show you." Who knows. Which ever it was... all I know is that GOD was the one with me when the emergency happened. I know that for a fact. And that's all that matters.
I love all of you... even you guys that I do not know who are following us and praying for our son. THANK YOU. I can't say it enough.
Just want to show you one thing... this is him in the bed last night? Tell me that's not a good baby??
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