- S
- D
If you know me, then you know that I never ask for much. I guess my pride gets in the way sometimes to accept that we all need help every now and then. So to know we need help right now is a very stressful thing to accept. But, with that being said, I am willing to lay my pride to the side when it comes to my kids and family.
As some of you already know that when I was around 20 weeks pregnant with Wyatt, we had an ultrasound that showed something concerning regarding his back. So, we had to go to the Children's Hospital of Atlanta for me to have a fetal MRI performed so we could see things a little better. When the test results finally came back, the radiologist came in the room and sat down with us to talk about what it showed. She said two things, caudal regression and sacral agenesis.
Caudal regression is a very broad spectrum of things to expect. Some kids are born with no legs, some born with legs that are joined together, some have legs that are short and/or have no movement, or have legs that can do everything and look normal with maybe just some nerve damage. But we obviously knew that Wyatt had legs, we could see them, I could feel them when he would kick, they were separated, but they always measured short, in the "less than 1%". Along with this diagnosis came the possibility of him having other issues like, problems with his brain, heart, kidneys, bladder, or bowels. Sacral agenesis is basically either having no tail bone or a short or under developed tail bone. With all these what if's and maybe's in the air we were told- we won't know anything definite until he is born.
I thought really?? So I came all this way and had all this thrown at me for you to tell me you don't know?! Well, I accepted it and walked out the door. I came home to Travis to tell him and he reassured me that everything would be fine, to not stress until he was here. I don't know if you have ever been told to not worry or stress over something-especially concerning your child(ren), but you know that you can't just put it on hold.
At this point I just said, "Ok God-it's in your hands, we will do your will." And that's what I did-for a while any way. I kept having follow up appointments going twice a week to the doctor. Once on Monday's to the doctor that monitored Wyatt and his growth and once on Friday's to my OBGYN. I did this for what felt like forever, then the time was getting closer to have him. The devil took over my mind and heart- he was telling me that I did something to cause this or maybe I didn't do enough. I thought "My child will never have a normal life. I thought nobody is going to love him except us, I am going to have to quit my job and take care of him for the rest of his life." And had that been the case, you're dang right I would have, but nobody WANTS that for their child. My anxiety got the best of me and had me crying, restless, and physically sick for days. But I prayed my way through it, and he took all of it away and out of my head so I could focus on just getting him here.
On July 5 I went into the hospital for high blood pressure and a headache, they kept me over night to monitor me. But my headache never went away and I kept vomiting so they thought it was best to go ahead and deliver. So on July 6, 2019 my sweet boy was finally here! As I heard him cry the doctor said, "What are they talking about with his legs-he looks perfectly fine!" I was so relieved but I remembered that they said nothing would be definite until an x-ray or MRI was performed to make sure of no nerve damage. But until we could get to that, he was perfect!
With him being born early, he had to stay in the NNICU, thankfully only for 8 days. He had some breathing issues and with me being diabetic his blood sugar kept dropping because his body was making insulin for my blood sugar and not his so it's like his body had to get used to his blood sugar instead of mine. They ran some blood tests, did an x-ray of his back and brain, and also a MRI on his brain. The only thing that saw was that his tailbone was short like we had previously predicted. So they still gave him the diagnosis of caudal regression/sacral agenesis. But other than that he didn't seem to have any complications or issues from those diagnoses.
When we finally got home, his doctor decided that orthopedics needed to take a further look at him and get a MRI done of his back along with any other tests that they need to help verify for any nerve damage in his back or legs that we can't see. We were also referred to speech/feeding therapist, since he came home with a feeding tube, and also to physical therapy.
On August 14, we had our appointment with both of the therapists. However, the night before our appointment was a little more hectic than normal. Wyatt has been taking medicine for colic and was recently changed to a new formula for a cow's milk allergy. Although, he has still been spitting/throwing up a lot- so much that he can't catch his breath and he replicates someone as if they are drowning or being suffocated. Well this night it was more than usual, Travis had him fixing to lay dawn to go to be and I was fixing to get in the shower. That's when I heard Travis scream for me, I took off running to the other side of the house to find him telling Wyatt to breath- I look over and Wyatt is not breathing, he's turning a dark reddish purple color, almost blue. I snatched him from Travis flipped him on his stomach and started popping him on his back for what seemed like minutes! He finally started breathing- I never wanted to hear that cry more than I did in that very moment.
With that being an issue now- we brought it up at our therapy appointment the next day. She advised us that something is going on in his throat that is causing him to do that and could cause him to possibly aspirate-so she said she needed a better look at his throat so she could give us the right therapy. She has ordered him to have a barium swallow test done. Both the therapist spent about 2 hours with him and told us that his cheek muscles are weak, which can cause him to not eat properly, he has torticollis-which means he turns his head towards the left more than the right, his eye muscles, stomach muscles, and neck muscles are weak as well. So we are having to go to therapy every week to work with him on all these things along with doing all these exercises at home.
When I went out on maternity leave I was told I would only get paid for 8 weeks but could take as much as 12 weeks if I wanted to. So due to not being paid after 8 weeks I was just going to take that. After yesterday's therapy appointment and knowing that he is going to need more attention than any daycare could give, and especially with all the exercises, fear of aspirating, all the appointments, plus still not knowing what orthopedics may say- me and Travis decided I need to take the rest of my time, the full 12 weeks so I can focus as much attention on Wyatt and getting him through all this, as I can. But the fear of the bills coming in, medical expenses, traveling expenses between Atlanta and Macon and little money to pay them is getting very scary.
Like I said previously, I'm not asking for help because we want but because we need it. We all have our struggles in life sometimes and it's all about how you choose to deal with it that makes the most difference. If you can help us, whether it be $5 or $500, we appreciate every penny. If you can't help we understand, just share this and so maybe someone else can. But most importantly, just pray! Pray that we can get all of his issues under control and that every test or study they do on Wyatt comes back with things that are fixable or nothing wrong at all. We couldn't have made it thus far with out all of the thoughts and prayers we had flooding over us. Again, we usually don't ask for much but when you're in a time of need, who better to run to than the people that love you. Thank you to everyone for anything you can give, spiritually or financially. We love all of you.
- Love The Smith Family
As some of you already know that when I was around 20 weeks pregnant with Wyatt, we had an ultrasound that showed something concerning regarding his back. So, we had to go to the Children's Hospital of Atlanta for me to have a fetal MRI performed so we could see things a little better. When the test results finally came back, the radiologist came in the room and sat down with us to talk about what it showed. She said two things, caudal regression and sacral agenesis.
Caudal regression is a very broad spectrum of things to expect. Some kids are born with no legs, some born with legs that are joined together, some have legs that are short and/or have no movement, or have legs that can do everything and look normal with maybe just some nerve damage. But we obviously knew that Wyatt had legs, we could see them, I could feel them when he would kick, they were separated, but they always measured short, in the "less than 1%". Along with this diagnosis came the possibility of him having other issues like, problems with his brain, heart, kidneys, bladder, or bowels. Sacral agenesis is basically either having no tail bone or a short or under developed tail bone. With all these what if's and maybe's in the air we were told- we won't know anything definite until he is born.
I thought really?? So I came all this way and had all this thrown at me for you to tell me you don't know?! Well, I accepted it and walked out the door. I came home to Travis to tell him and he reassured me that everything would be fine, to not stress until he was here. I don't know if you have ever been told to not worry or stress over something-especially concerning your child(ren), but you know that you can't just put it on hold.
At this point I just said, "Ok God-it's in your hands, we will do your will." And that's what I did-for a while any way. I kept having follow up appointments going twice a week to the doctor. Once on Monday's to the doctor that monitored Wyatt and his growth and once on Friday's to my OBGYN. I did this for what felt like forever, then the time was getting closer to have him. The devil took over my mind and heart- he was telling me that I did something to cause this or maybe I didn't do enough. I thought "My child will never have a normal life. I thought nobody is going to love him except us, I am going to have to quit my job and take care of him for the rest of his life." And had that been the case, you're dang right I would have, but nobody WANTS that for their child. My anxiety got the best of me and had me crying, restless, and physically sick for days. But I prayed my way through it, and he took all of it away and out of my head so I could focus on just getting him here.
On July 5 I went into the hospital for high blood pressure and a headache, they kept me over night to monitor me. But my headache never went away and I kept vomiting so they thought it was best to go ahead and deliver. So on July 6, 2019 my sweet boy was finally here! As I heard him cry the doctor said, "What are they talking about with his legs-he looks perfectly fine!" I was so relieved but I remembered that they said nothing would be definite until an x-ray or MRI was performed to make sure of no nerve damage. But until we could get to that, he was perfect!
With him being born early, he had to stay in the NNICU, thankfully only for 8 days. He had some breathing issues and with me being diabetic his blood sugar kept dropping because his body was making insulin for my blood sugar and not his so it's like his body had to get used to his blood sugar instead of mine. They ran some blood tests, did an x-ray of his back and brain, and also a MRI on his brain. The only thing that saw was that his tailbone was short like we had previously predicted. So they still gave him the diagnosis of caudal regression/sacral agenesis. But other than that he didn't seem to have any complications or issues from those diagnoses.
When we finally got home, his doctor decided that orthopedics needed to take a further look at him and get a MRI done of his back along with any other tests that they need to help verify for any nerve damage in his back or legs that we can't see. We were also referred to speech/feeding therapist, since he came home with a feeding tube, and also to physical therapy.
On August 14, we had our appointment with both of the therapists. However, the night before our appointment was a little more hectic than normal. Wyatt has been taking medicine for colic and was recently changed to a new formula for a cow's milk allergy. Although, he has still been spitting/throwing up a lot- so much that he can't catch his breath and he replicates someone as if they are drowning or being suffocated. Well this night it was more than usual, Travis had him fixing to lay dawn to go to be and I was fixing to get in the shower. That's when I heard Travis scream for me, I took off running to the other side of the house to find him telling Wyatt to breath- I look over and Wyatt is not breathing, he's turning a dark reddish purple color, almost blue. I snatched him from Travis flipped him on his stomach and started popping him on his back for what seemed like minutes! He finally started breathing- I never wanted to hear that cry more than I did in that very moment.
With that being an issue now- we brought it up at our therapy appointment the next day. She advised us that something is going on in his throat that is causing him to do that and could cause him to possibly aspirate-so she said she needed a better look at his throat so she could give us the right therapy. She has ordered him to have a barium swallow test done. Both the therapist spent about 2 hours with him and told us that his cheek muscles are weak, which can cause him to not eat properly, he has torticollis-which means he turns his head towards the left more than the right, his eye muscles, stomach muscles, and neck muscles are weak as well. So we are having to go to therapy every week to work with him on all these things along with doing all these exercises at home.
When I went out on maternity leave I was told I would only get paid for 8 weeks but could take as much as 12 weeks if I wanted to. So due to not being paid after 8 weeks I was just going to take that. After yesterday's therapy appointment and knowing that he is going to need more attention than any daycare could give, and especially with all the exercises, fear of aspirating, all the appointments, plus still not knowing what orthopedics may say- me and Travis decided I need to take the rest of my time, the full 12 weeks so I can focus as much attention on Wyatt and getting him through all this, as I can. But the fear of the bills coming in, medical expenses, traveling expenses between Atlanta and Macon and little money to pay them is getting very scary.
Like I said previously, I'm not asking for help because we want but because we need it. We all have our struggles in life sometimes and it's all about how you choose to deal with it that makes the most difference. If you can help us, whether it be $5 or $500, we appreciate every penny. If you can't help we understand, just share this and so maybe someone else can. But most importantly, just pray! Pray that we can get all of his issues under control and that every test or study they do on Wyatt comes back with things that are fixable or nothing wrong at all. We couldn't have made it thus far with out all of the thoughts and prayers we had flooding over us. Again, we usually don't ask for much but when you're in a time of need, who better to run to than the people that love you. Thank you to everyone for anything you can give, spiritually or financially. We love all of you.
- Love The Smith Family