The Marinellos
Sunday, December 15, 2019
Sunday, August 4, 2013
Sunday, October 28, 2012
Tooth Fairy
My baby girl has officially lost her first tooth. We have been waiting for this dang tooth to come out for almost a year. She had so much work done to her top 4 teeth that it made it ready to come out earlier than normal. Her new tooth I dont think is even ready to come in but thats okay she was super excited to lose it. I was so happy for her cause she was so excited but yet at the same time it made me so sad to see that visual of her growing up. Everytime I look at her now with that goofy smile it is bittersweet. I had to leave really early Saturday to take Seth to PCH for his EEG study that I completely forgot the tooth fairy. Mike told me she woke up in tears saying the tooth fairy forgot her so I had him write a note to her from the tooth fairy and put a little gift on the front porch and had him tell her the tooth fairy had so many kiddos lose their teeth last night that by the time she got to our house it was almost morning so she left it by the front door. So that made her feel much better :)
Thursday, October 25, 2012
The one thing I HATE with a passion.
Seizures are rough. When we first found out that something was wrong the biggest thing I feared was seizures. I was talking on the phone with Lis when Seth was 4 months old right before we got the results of his EEG saying I just do not want to deal with seizures...they scare me the most. We got the results of his first EEG and were told his brain waves are not normal at all. They put him on a pretty safe med just to try and prevent anything if they decide to make their appearance. Well they decided to show there ugly head when Seth was 7 months old after his first surgery. They were spasms and so not fun to deal with and actually we have yet to get them under control. Around March (7 months ago) we have had the pleasure of "tonic clonic" seizures and I absolutely HATE them with a passion. It is horrible to watch his poor body when they are going on. They have gotten a lot worse since his birthday.
We started the Ketogenic diet to hopefully get these things under control. 2 days before the diet started he did this really weird breathing episode while at an appt. The doctor told us he thought that maybe some salvia went down the wrong pipe. Since it was the first time it happened I let it go and went on with my life. Well last Thursday (2 weeks into the diet) his school teacher called Mrs. Kasey (we love her) and she told me Seth was really struggling to breathe and really lethargic and really having a hard time and she asked if I would come down and check him out and see if I needed to take him in. By the time I got to his school he was doing much better. I made him a doctor appt because he did sound like there might be some gunk in his lungs but was unsure. I took him in and explained what happened and I was told that his lungs are clear and that some salvia probably went down the wrong pipe. This time I knew deep down that, that was not the case. I decided to take him home and just try and get it on video if it happens again. I was up all night thinking about it and thinking this has to be a neurological thing. It is like he is forgetting how to swallow and breathe at the same time. It is so weird I know but that is the only way I can think of how to describe it. Well Friday comes and he does it again. I was able to get some on video but its not the best. It took me a while to find the phone and it just wasnt that great. I have it saved to show the epileptologist when we go in november but until then I will keep trying to get videos. Monday I decided to call his epileptologist and just ask what we should do or if he thinks it has to do with the diet or if it is seizure activity. It took FOREVER for them to call me back and even longer for the doc to call me back. He called back around 7pm that night. I told him everything that was going on and he thinks it is seizure activity. He wants Seth back on the depakene (which we got him off before the diet) and if it happens again and lasts around 5minutes we need to call 911. Tuesday his teacher told me that he had two more of those "breathing episodes" but nothing more than a minute. The more I think about it the more I am agreeing that they are seizures. Especially since they range in time span.
Well I decided yesterday that he needed to be seen earlier than Nov 20th and that I would like another 24hour sleep study done. I called and left a message with the nurse to ask his epileptologist if we can try that. I never got a call back. He then decided he would have another "breathing episode" while he was sleeping and it scared the crap out of me. I ran in his room picked him up and tried to get him alert so that he could swallow and breathe ok. It lasted maybe 2 min so it wasnt nearly as long as the one at the CRS appt or the first one at school. I called 3 more times today and finally got a call back that she was going to ask his doc and get back to me. Still havent heard yet. I have a feeling deep down that it is a new seizure and that the diet is just not working on his body like it does for others. I am now going to start fighting for the Vegus Nerve Stimulator.
Please pray that we can figure these out and that we can get in before November 20th and get another 24 hour sleep study done. It is just really weighing on my heart and I want my precious little fun loving boy back!
We started the Ketogenic diet to hopefully get these things under control. 2 days before the diet started he did this really weird breathing episode while at an appt. The doctor told us he thought that maybe some salvia went down the wrong pipe. Since it was the first time it happened I let it go and went on with my life. Well last Thursday (2 weeks into the diet) his school teacher called Mrs. Kasey (we love her) and she told me Seth was really struggling to breathe and really lethargic and really having a hard time and she asked if I would come down and check him out and see if I needed to take him in. By the time I got to his school he was doing much better. I made him a doctor appt because he did sound like there might be some gunk in his lungs but was unsure. I took him in and explained what happened and I was told that his lungs are clear and that some salvia probably went down the wrong pipe. This time I knew deep down that, that was not the case. I decided to take him home and just try and get it on video if it happens again. I was up all night thinking about it and thinking this has to be a neurological thing. It is like he is forgetting how to swallow and breathe at the same time. It is so weird I know but that is the only way I can think of how to describe it. Well Friday comes and he does it again. I was able to get some on video but its not the best. It took me a while to find the phone and it just wasnt that great. I have it saved to show the epileptologist when we go in november but until then I will keep trying to get videos. Monday I decided to call his epileptologist and just ask what we should do or if he thinks it has to do with the diet or if it is seizure activity. It took FOREVER for them to call me back and even longer for the doc to call me back. He called back around 7pm that night. I told him everything that was going on and he thinks it is seizure activity. He wants Seth back on the depakene (which we got him off before the diet) and if it happens again and lasts around 5minutes we need to call 911. Tuesday his teacher told me that he had two more of those "breathing episodes" but nothing more than a minute. The more I think about it the more I am agreeing that they are seizures. Especially since they range in time span.
Well I decided yesterday that he needed to be seen earlier than Nov 20th and that I would like another 24hour sleep study done. I called and left a message with the nurse to ask his epileptologist if we can try that. I never got a call back. He then decided he would have another "breathing episode" while he was sleeping and it scared the crap out of me. I ran in his room picked him up and tried to get him alert so that he could swallow and breathe ok. It lasted maybe 2 min so it wasnt nearly as long as the one at the CRS appt or the first one at school. I called 3 more times today and finally got a call back that she was going to ask his doc and get back to me. Still havent heard yet. I have a feeling deep down that it is a new seizure and that the diet is just not working on his body like it does for others. I am now going to start fighting for the Vegus Nerve Stimulator.
Please pray that we can figure these out and that we can get in before November 20th and get another 24 hour sleep study done. It is just really weighing on my heart and I want my precious little fun loving boy back!
Sunday, August 19, 2012
SCHOOL
We just got back from Palm Springs and as soon as I have some free time I will upload the photos I have from that wonderful yearly trip. I just wanted to give a quick update and tell you that as of tomorrow I am going to have a little boy going to school and to me that is just crazy. Seth missed his actual first day of school. It was last monday and since we were on vacation this Monday will be his first day of school. It was just yesterday that I was giving birth to the chubby 9.1pound baby boy and now he is off to preschool. I have a ton of mixed feelings about this but I know that it will be the best thing for him :) I will post pictures as soon as I get home just cause he is gonna look so stinkin cute :)
Urologist and BIRTHDAYS!
I originally wrote this the week of June 22 and then something happened and it never got posted so here it is :)
So on Tuesday last week Seth had his urologist appt and I was so excited to go because I was thinking that Seth would get off his antibiotic that he has been on since birth because of his kidneys. (here is a link to the condition that Seth has VUR) The appointment was at 9 and we had to check in at 8:30am. It has been about a year since we went in there and I had to fill out new papers to update their system. When I get to the medical history sheet my heart always sinks a little. I wish I could be the mom that is able to check all the "no" boxes but instead I have to check many many "yes" boxes. The very irritating part is when you have to explain what the situation is or list out the medicine your child is on and they only give you a partial line. Some people need paragraphs here people! Anyways enough of that :) We waited so very patiently and finally got called back to do his ultrasound. I gave him some music to listen to so he would stay still and for the 30 min he did pretty good. He complained a few time and tried to roll over but for the most part he was a rock star. Let me tell you trying to hold this boy down is hard, he is one strong little boy! After the ultrasound we had to go back into the waiting room and wait until they called us back to a room to have our actual appointment and talk about the ultrasound results.
Dr. Bailey's nurse came in to talk to me which was fine because I really like her. When she walked in the first thing she asked was how was he feeling and had he had any UTI's (in my head I am thinking he shouldn't have any cause you fixed the problem) and I knew at that moment something still was not right. (Remember in my last post that I mentioned our appointment after his surgery in 2010 that they did an ultrasound in December and his kidney was still enlarged a little bit.) Well she started to tell me that his right kidney and ureters (grade 4 before surgery) are perfect and everything is looking great there but the left kidney (grade 5 before surgery) and the ureters and enlarged and worse than before the corrective surgery. My first reaction was are you serious...she said yes. She said most likely there is a blockage it happens in about 1% of the kiddos. Great, Im thinking well perfect my kid once again gets in that wonderful 1% range. So we have Seth scheduled for a VCUG to check his kidney reflux and then a MAG3 test scheduled to check for a blockage. We should have these done before July 10th when we come in for the results.
I can not even begin to tell you how much I can not believe he is already 3. He is a true miracle and an amazing little boy. I went to my moms on Friday and my mom and all the kiddos and of course me went to Sams club and did a little shopping and then I got some cupcakes for his little birthday. That evening my mom and dad came over after dinner and we took Seth swimming because that is his absolute favorite thing ever. While Mike and I took the kiddos swimming with my mom, my dad stayed behind and put up Seths swing that we got him. He is so in LOVE with it and can swing for hours. He even falls asleep in it. We had a great day with Seth and celebrating him and how far he has come. It is crazy to think back on his birth and the event in the NICU and all of the unknown and having no idea if he would even get out of the NICU. We were told he would not be normal and he would never crawl and be a typical kid. Seth is amazing and can do all these things and more:
-roll over
-clap
-crawl
-sleeps through the night
-smiles
-laughs
-can knock out his own teeth
He is a miracle boy that has beaten so many odds and is still going strong! Happy Birthday my wonderful little boy! Here are a few pictures from his birthday.
So on Tuesday last week Seth had his urologist appt and I was so excited to go because I was thinking that Seth would get off his antibiotic that he has been on since birth because of his kidneys. (here is a link to the condition that Seth has VUR) The appointment was at 9 and we had to check in at 8:30am. It has been about a year since we went in there and I had to fill out new papers to update their system. When I get to the medical history sheet my heart always sinks a little. I wish I could be the mom that is able to check all the "no" boxes but instead I have to check many many "yes" boxes. The very irritating part is when you have to explain what the situation is or list out the medicine your child is on and they only give you a partial line. Some people need paragraphs here people! Anyways enough of that :) We waited so very patiently and finally got called back to do his ultrasound. I gave him some music to listen to so he would stay still and for the 30 min he did pretty good. He complained a few time and tried to roll over but for the most part he was a rock star. Let me tell you trying to hold this boy down is hard, he is one strong little boy! After the ultrasound we had to go back into the waiting room and wait until they called us back to a room to have our actual appointment and talk about the ultrasound results.
Dr. Bailey's nurse came in to talk to me which was fine because I really like her. When she walked in the first thing she asked was how was he feeling and had he had any UTI's (in my head I am thinking he shouldn't have any cause you fixed the problem) and I knew at that moment something still was not right. (Remember in my last post that I mentioned our appointment after his surgery in 2010 that they did an ultrasound in December and his kidney was still enlarged a little bit.) Well she started to tell me that his right kidney and ureters (grade 4 before surgery) are perfect and everything is looking great there but the left kidney (grade 5 before surgery) and the ureters and enlarged and worse than before the corrective surgery. My first reaction was are you serious...she said yes. She said most likely there is a blockage it happens in about 1% of the kiddos. Great, Im thinking well perfect my kid once again gets in that wonderful 1% range. So we have Seth scheduled for a VCUG to check his kidney reflux and then a MAG3 test scheduled to check for a blockage. We should have these done before July 10th when we come in for the results.
JUNE 22 my precious little guy turned 3!
I can not even begin to tell you how much I can not believe he is already 3. He is a true miracle and an amazing little boy. I went to my moms on Friday and my mom and all the kiddos and of course me went to Sams club and did a little shopping and then I got some cupcakes for his little birthday. That evening my mom and dad came over after dinner and we took Seth swimming because that is his absolute favorite thing ever. While Mike and I took the kiddos swimming with my mom, my dad stayed behind and put up Seths swing that we got him. He is so in LOVE with it and can swing for hours. He even falls asleep in it. We had a great day with Seth and celebrating him and how far he has come. It is crazy to think back on his birth and the event in the NICU and all of the unknown and having no idea if he would even get out of the NICU. We were told he would not be normal and he would never crawl and be a typical kid. Seth is amazing and can do all these things and more:
-roll over
-clap
-crawl
-sleeps through the night
-smiles
-laughs
-can knock out his own teeth
He is a miracle boy that has beaten so many odds and is still going strong! Happy Birthday my wonderful little boy! Here are a few pictures from his birthday.
Here is the swing that grandpa put up for him and he was so stinkin happy!
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