The Marinellos
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!
Monday, June 18, 2012
Holy Cow
Okay once again it has been a while and I promise that my new goal is to update once a week because we have a ton of new things happening! One big this is SETH turns 3 on Friday. Three years old, I can not even believe it. I cant believe how fast three years has gone and yet how crazy they have been. I remember the day I had Seth so well. It was a crazy day and a crazy and amazing experience. I wish that the 11 days after his birth were just a horrible dream but I must admit they were not. We have been through so much with him in his 3 little years of life. He has had 6 surgeries-7 if you count the botox which was not surgery but he was put under. He has had some type of therapy once a week since he was 3 weeks old. He has had more doctor appointments than I care to count, blood draws, shots, pokes, and he has lost his top 2 front teeth. And you know what he still smiles! He is one of the happiest kid I know. He is absolutely amazing and freakin adorable.
This week is a very busy week. This morning Seth had an appointment with a therapist who is getting him the happy chair. I can not wait to get this and get him sitting in the right position. When she checked Seth out and looked at his back she said he already has beginning stages of scoliosis which I just did not want to hear. His ribs on one side are more pronounced and he does in fact have the rounded back. She said if we can get him in this seat and work on getting his pelvic bone in the vertical position he will be good. She believes that he will be able to walk if we can just get him sitting. This chair is amazing and when we get his back positioned correctly he then can start standing up on his own and then we can work on walking.
Tuesday we have a urologist appointment and they will do an ultrasound of his kidneys and ureters. He had the corrective bladder and kidney surgery in October 2010 and we had an ultrasound Jan 2011 and his kidneys were still enlarged so he wanted us to come back in a year and get them checked out again. Praying we have no kidney damage and that we can stop giving him the antibiotics. After that we need to get our butts home cause he has therapy at 11.
This Wednesday we have another fundraiser for Seth at Cold Stone which is 2 days before his birthday so its a fun little event for him. If you have time and want to celebrate his bday with us come one down. Its on Valvista and Baseline. Before we head over to cold stone we have occupational therapy in the morning and then we will make it out that way for some wonderful ice cream.
Thursday I have another urologist appointment but this time it is for Ember. When Sydney was 3 months old she ended up in the hospital for 3 days with a UTI. They found out there that she had kidney reflux. It is graded on a scale from 1-5 5 being the worst. She had grade 3 on the right side. She out grew hers when she was around 1 and we were able to go off antibiotics. Seth we found out had it as well when he was in the NICU. He had grade 4 on the right side and grade 5 on the left. When you have anything above 3 you will most likely not be able to out grow it and will need corrective surgery. If you have grade 5 you will for sure need surgery. They sometimes try to do other things like deflux gel balls to help but it did not with Seth and he needed the surgery. So when Ember was 2 days old I asked the hospital to run the test because I did not want to take her home and end up back in the hospital because of a UTI that we could avoid with antibiotics if she has kidney reflux. Sure enough she as well has it and she had a grade 2 on both sides. Thursday they will do an ultrasound and see if she still has it or if we can take her off the antibiotics as well.
Friday Seth turns 3. I am not sure what we are going to do yet. I am so bad with birthdays and always wait until the last minute and then I never do anything. If we do something we will probably have a few people over and go swimming and have some pizza.
Mike and I are trying to plan our birthdays. 30 years old for the both of us...I still can not believe that I am going to be 30! I think I have a great idea for his I just have to finish some last minute details before I know if it will for sure work out. Next week we have an important appointment for sure regarding the ketogenic diet. We have been waiting for over 2 months for this and I would love to get it started so that we can find out if this is going to work for him or if we are gonna have to do something else. I am not looking forward to this diet at all so please pray for me when you think about it. I am having a hard time with the fact that he will probably not take the bottle to eat the food and we will have to go with the g-tube all the time and I just really do not want him to lose the ability to suck. I know that sounds so stupid and that stopping seizures are so very importants but it is still very hard for me to let that go.
Here are some pictures to hold you over :)
This week is a very busy week. This morning Seth had an appointment with a therapist who is getting him the happy chair. I can not wait to get this and get him sitting in the right position. When she checked Seth out and looked at his back she said he already has beginning stages of scoliosis which I just did not want to hear. His ribs on one side are more pronounced and he does in fact have the rounded back. She said if we can get him in this seat and work on getting his pelvic bone in the vertical position he will be good. She believes that he will be able to walk if we can just get him sitting. This chair is amazing and when we get his back positioned correctly he then can start standing up on his own and then we can work on walking.
Tuesday we have a urologist appointment and they will do an ultrasound of his kidneys and ureters. He had the corrective bladder and kidney surgery in October 2010 and we had an ultrasound Jan 2011 and his kidneys were still enlarged so he wanted us to come back in a year and get them checked out again. Praying we have no kidney damage and that we can stop giving him the antibiotics. After that we need to get our butts home cause he has therapy at 11.
This Wednesday we have another fundraiser for Seth at Cold Stone which is 2 days before his birthday so its a fun little event for him. If you have time and want to celebrate his bday with us come one down. Its on Valvista and Baseline. Before we head over to cold stone we have occupational therapy in the morning and then we will make it out that way for some wonderful ice cream.
Thursday I have another urologist appointment but this time it is for Ember. When Sydney was 3 months old she ended up in the hospital for 3 days with a UTI. They found out there that she had kidney reflux. It is graded on a scale from 1-5 5 being the worst. She had grade 3 on the right side. She out grew hers when she was around 1 and we were able to go off antibiotics. Seth we found out had it as well when he was in the NICU. He had grade 4 on the right side and grade 5 on the left. When you have anything above 3 you will most likely not be able to out grow it and will need corrective surgery. If you have grade 5 you will for sure need surgery. They sometimes try to do other things like deflux gel balls to help but it did not with Seth and he needed the surgery. So when Ember was 2 days old I asked the hospital to run the test because I did not want to take her home and end up back in the hospital because of a UTI that we could avoid with antibiotics if she has kidney reflux. Sure enough she as well has it and she had a grade 2 on both sides. Thursday they will do an ultrasound and see if she still has it or if we can take her off the antibiotics as well.
Friday Seth turns 3. I am not sure what we are going to do yet. I am so bad with birthdays and always wait until the last minute and then I never do anything. If we do something we will probably have a few people over and go swimming and have some pizza.
Mike and I are trying to plan our birthdays. 30 years old for the both of us...I still can not believe that I am going to be 30! I think I have a great idea for his I just have to finish some last minute details before I know if it will for sure work out. Next week we have an important appointment for sure regarding the ketogenic diet. We have been waiting for over 2 months for this and I would love to get it started so that we can find out if this is going to work for him or if we are gonna have to do something else. I am not looking forward to this diet at all so please pray for me when you think about it. I am having a hard time with the fact that he will probably not take the bottle to eat the food and we will have to go with the g-tube all the time and I just really do not want him to lose the ability to suck. I know that sounds so stupid and that stopping seizures are so very importants but it is still very hard for me to let that go.
Here are some pictures to hold you over :)
Sydney and Em at one of Seths appointments
Her sad face and to me it is so stinkin cute.
Seth playing in his bed. We took this with his new monitor we got with some of the money from the hunger games fundraiser. We love it so much and we can see him so good. We are going to mount it above his bed so that it will look down on his so that we dont have the netting in the way.
I saw this shirt and I HAD to get it for Seth. It is one of my favorite shirts :)
Muffin
On the way to Chicago. I will have to do another blog post all about Chicago. We all had a great time and I got to spend time with family that I have not seen in a long time!
Sydney and Jessie. Matching Jammies and they did their nails. So cute!
American Girl Store. My wonderful cousin Jen got sydney a special day at the store. She got to have lunch with her doll. Pick out any doll she wanted to buy. She got some clothes and a dog and she got to do a photo shoot with the doll and pet. She also got to have her doll go to the salon and get her hair done. She had so much fun and I was seriously in Heaven. I love the american girl dolls and I have the 4 original ones and I just thought it was such a cool place. I can not wait to go back there again.
Seth finally got his stander that we ordered in April 2011. We got the actual stander in Oct 2011 but with the wrong parts. The last week of May 2012 we got the correct parts! FINALLY!!!
So stinkin cute I just want to eat him!
At the neurologist appointment and he was so happy that I had to get a picture of him. PRECIOUS!
On the last day of preschool Miss Sonja did some amazing face painting! She was so in LOVE with her unicorn.
Wednesday, April 11, 2012
Fevers
Ember recovered pretty quickly from her hand foot mouth after we finally figured out what it was. I thought we were over the sickness but I was wrong.
Friday evening we went to my parents to have some dinner and just hang out together and everyone was happy and excited to see grandma and grandpa. The girls got to go for a walk with grandma and Seth hung out with us and got a bath. But then Saturday happened! Seth woke up about 7am I went to get him out of bed and I thought he felt warm but nothing enough to check so I tried to feed him and he wasn't ready to eat yet which is nothing new so I let him go and play in his crazy cage and I would try to feed him in 30 min. I ended up having to tube feed him which again is nothing crazy and then put him down for a little alone time cat nap. He slept for an hour and when I got him up he was smokin hot! Im talking 103.5 HOT and I tried everything to get the thing down and the lowest I got it was 102.5. Every time he would spike he would have trouble breathing so I decided after dinner that I was going to take him into urgent care just in case the breathing was too bad and he needed some help. When we got there the fever was in the 104's and he was miserable and they were able to get it down in the 101-102's and he started breathing better. They did a chest xray and it came back normal so we were in the clear for pneumonia which was so awesome to hear because I really did not want to have him get admitted. They said it was just viral and as long as I can keep his fever down (because he struggles too hard to breathe when its high) I would not need to bring him back. Sunday we laid low and when he woke up he was 102.7 and not feeling great. He went back to bed after I tube fed him and he slept from 8:45 until 12 which is so not like him and then he went back down for another nap from 3-5. I feel so bad for him when he gets sick and can not tell us what is hurting or bothering him. I just wish he could point or show me what hurts!
Also another side note Monday April 2nd we got all the kids ready for bed and put Seth down about 7:45pm and we thought he fell asleep then we hear him laughing and playing which is also nothing new and he was still playing at 8:45 so Mike decided he would just go in there and lay with him. He left the lights off and climbed into bed with him and noticed something dark on Seth's face and so he used his phone light to look and there was blood all over his face so he gets out and turns the overhead light on and there is blood everywhere in his bed! He comes out and tells me Seth lost his other top tooth! SERIOUSLY?!?!?!?!? was my only response. I went in and found the tooth thank goodness and started to clean everything and let me just say one more time...there was blood everywhere! all over his clothes-sheets-the sheets that I had hanging over his bed so he would not lose the other tooth. Oh goodness this boy!!!!! I will post pictures later when I get a moment.
Saturday, March 31, 2012
And so it continues!
Well Wednesday morning I woke up to puke in Ember's crib and I just knew it was gonna be a wonderful day. Sydney told me her tummy hurt so I kept her home from preschool and she ended up not eating much except a few bites here and there until this morning (saturday) Ember on the other had was horrible Wednesday-Thursday and then Friday she just wouldn't eat anything at all and just cried. Today she was fine until 11:45am and then hell broke lose and I was gonna lose my mind. She wouldn't even have a popsicle. I had tried to get into the doc yesterday but there was nothing available and Monday seemed so far away so I decided to take her into the PCH urgent care praying that they find something wrong with her. As soon as we get there she starts acting fine walking around all happy and smiling at the nurses and of course EATING crackers. When the doc comes in I know I sound stupid but she just isn't acting right. He checks her temp...no fever, checks her breathing and neck all good, looks in the ears all good, then checks the throat and what does he find....SORES lots of them. She has Hand-Foot-Mouth!!!!!!! Great wonderful just what I needed :) I am actually really glad they found something wrong. Even though I knew she wasn't acting herself you never know with this girl. I mean she can be a brat quite often but this was more than her typical bratty self. So right now I am waiting on Walgreens to finish her numbing cream for her mouth and ear drops. The doc wants us to but drops in the ears cause it is all connected and help relieve pressure if it builds up.
Praying for a quick recovery for her. Even though I did read she can still be contagious for 1-3 weeks after she starts feeling better. Great!!!!
Praying for a quick recovery for her. Even though I did read she can still be contagious for 1-3 weeks after she starts feeling better. Great!!!!
Tuesday, March 6, 2012
Serious and not fun news.
Quite a bit has happened the past few months! On January 30th Seth had another EEG done to just check up on his seizure activity, he seems to have one almost every year. He did really well and slept when he needed to and was awake and playing when he needed to as well. The annoying part of it all is the stuff they use to hold all the things on his head because it is so hard to get out of his thick curly hair :)
The on January 31st we went for a MRI and Dr. Bernes (his neurologist) wanted to have an updated one cause we only have one from when he was in the NICU around the time they diagnosed cCMV. He was put to sleep for this and it took quite a while and he had a little trouble with his breathing but not too bad. He is such a trooper and after a little nap he was back to his normal self.
So I called to get the results the day after his MRI and got news that I just really did not want to hear. The EEG: showed constant seizing while sleeping during those 45min of the test, basically his brain wont stop and the doctor said with that much seizing (if he really does while sleeping through the night) he should not wake up in the morning. So we now have a 5th med (Valium) to give him to hopefully help those out.
The MRI: His actual brain has not changed since the first MRI which were thought was going to happen. He did say this is one of the worst prenatal syndromes he has seen and where Seth's brain should be ridged his is smooth. I asked if he thinks Seth will walk or talk and he said in his honest opinion "no" he will never walk or talk. That was a huge punch in the gut. I mean it all has been a huge punch in the gut but it is really hard to hear that you might not ever hear your little boy say hi mommy, or I love you, or yell at me, or talk with his sisters...it was just hard to hear. I then asked if he thinks Seth will crawl (knowing he already does) and he said no I do not think so, I was able to say He crawls EVERYWHERE! He was amazing that he is able to do that and said by looking at his MRI he should not be able to do that!
What a miracle my little boy is praise GOD for such an amazing miracle to be apart of. My little boy is still here against all odds because HE wants him here! I truly believe this with all my heart but putting him to bed at night is one of the hardest things for me lately. To hear that he shouldn't wake up in the morning with that much seizing its hard to put him to bed and think maybe this is the last night I will hold him. "What I know trumps how I feel" is so very hard right now.
He has been on Valium Since the beginning of Feb and Dr. Bernes wants to do a 24hr sleep/video study on Seth at the hospital. He will get admitted on March 12th and we will stay there until they get everything that they need. If they end up wanting to change some meds we will have to stay for at least 72 hours. So what this means is that Seth is now being seen by an epileptic team and after the study will tell me their opinion on what the best thing is for Seth and then send those notes to Dr. Bernes and then the following Monday they will have a epileptic team meeting and talk about what they best options will be for Seth and then we will meet with them and talk it all out. According to our neurologist Dr. Bernes we have probably 2 options, a vegus nerve stimulator or a corpus callosotomy. Dr Bernes will still be Seth Neurologist but he will also now have an epileptic team that will deal with the more serious/risky procedures.
If you think of it please pray for my little boy! I know he is in good hands and that his story is already written out but pray for strength that we make the right decisions for Seth and that the doctors as well make the best decisions for my little boy!
Seth on Feb 9th went into Cardons and got botox injections in his calves. We have been waiting since December 6th for insurance to get there butts in gear and approve this and finally they did. Seth points his toes all the time. His brain tells him that that is a normal position to be in and then when he gets excited he does it even more. We have tried AFO's to help this out but he is able to get out of them all the time so in December we saw Dr. Moss a neurosurgeon. He said a more permanent fix would be a dorsal rhizotomy but he does not want to do that to a two year old so for now we are going to try Botox to paralyze the muscles so that is exactly what we did. After the Botox we had to wait 6 days and then on Feb 14th we went in and they casted his feet from the knee down. This is stretching him out so that after the casting is done we can get him into his AFO's and hopefully we will not be able to get his heel out of them.
On Feb 28th we went in to get the first set of casts off and they decided that he needed to be stretched more. (they want him 10 degrees past normal which is 90 degrees) so they put on another set for 2 more weeks.
On March 12th he is suppose to get the casts off and if he does not need a third set then we go straight to a Shriners clinic that does the moldings for afo's to get him fitted for a new pair of AFO's. He will have the botox repeated every 4-6 months as needed. The casting (thankfully) will not need to be repeated every time he gets botox. He loves his bath so much and we can not give them to him and it breaks my heart plus I love a clean boy and he not so clean right now, I mean we give him a quick shower but that is not as good as a bath :)
Please if you think about it pray for Seth and for me as next week gets closer. We will be at PCH for as long as they need us to be. Praying it is just quick and in and out in 24 hours but sometimes that is not the case. And patience for me cause I cant leave the room unless I am running down to get some food and I have to bring it right back up and eat it in the room. So it could get a little crazy :)
The on January 31st we went for a MRI and Dr. Bernes (his neurologist) wanted to have an updated one cause we only have one from when he was in the NICU around the time they diagnosed cCMV. He was put to sleep for this and it took quite a while and he had a little trouble with his breathing but not too bad. He is such a trooper and after a little nap he was back to his normal self.
So I called to get the results the day after his MRI and got news that I just really did not want to hear. The EEG: showed constant seizing while sleeping during those 45min of the test, basically his brain wont stop and the doctor said with that much seizing (if he really does while sleeping through the night) he should not wake up in the morning. So we now have a 5th med (Valium) to give him to hopefully help those out.
The MRI: His actual brain has not changed since the first MRI which were thought was going to happen. He did say this is one of the worst prenatal syndromes he has seen and where Seth's brain should be ridged his is smooth. I asked if he thinks Seth will walk or talk and he said in his honest opinion "no" he will never walk or talk. That was a huge punch in the gut. I mean it all has been a huge punch in the gut but it is really hard to hear that you might not ever hear your little boy say hi mommy, or I love you, or yell at me, or talk with his sisters...it was just hard to hear. I then asked if he thinks Seth will crawl (knowing he already does) and he said no I do not think so, I was able to say He crawls EVERYWHERE! He was amazing that he is able to do that and said by looking at his MRI he should not be able to do that!
What a miracle my little boy is praise GOD for such an amazing miracle to be apart of. My little boy is still here against all odds because HE wants him here! I truly believe this with all my heart but putting him to bed at night is one of the hardest things for me lately. To hear that he shouldn't wake up in the morning with that much seizing its hard to put him to bed and think maybe this is the last night I will hold him. "What I know trumps how I feel" is so very hard right now.
He has been on Valium Since the beginning of Feb and Dr. Bernes wants to do a 24hr sleep/video study on Seth at the hospital. He will get admitted on March 12th and we will stay there until they get everything that they need. If they end up wanting to change some meds we will have to stay for at least 72 hours. So what this means is that Seth is now being seen by an epileptic team and after the study will tell me their opinion on what the best thing is for Seth and then send those notes to Dr. Bernes and then the following Monday they will have a epileptic team meeting and talk about what they best options will be for Seth and then we will meet with them and talk it all out. According to our neurologist Dr. Bernes we have probably 2 options, a vegus nerve stimulator or a corpus callosotomy. Dr Bernes will still be Seth Neurologist but he will also now have an epileptic team that will deal with the more serious/risky procedures.
If you think of it please pray for my little boy! I know he is in good hands and that his story is already written out but pray for strength that we make the right decisions for Seth and that the doctors as well make the best decisions for my little boy!
Seth on Feb 9th went into Cardons and got botox injections in his calves. We have been waiting since December 6th for insurance to get there butts in gear and approve this and finally they did. Seth points his toes all the time. His brain tells him that that is a normal position to be in and then when he gets excited he does it even more. We have tried AFO's to help this out but he is able to get out of them all the time so in December we saw Dr. Moss a neurosurgeon. He said a more permanent fix would be a dorsal rhizotomy but he does not want to do that to a two year old so for now we are going to try Botox to paralyze the muscles so that is exactly what we did. After the Botox we had to wait 6 days and then on Feb 14th we went in and they casted his feet from the knee down. This is stretching him out so that after the casting is done we can get him into his AFO's and hopefully we will not be able to get his heel out of them.
On March 12th he is suppose to get the casts off and if he does not need a third set then we go straight to a Shriners clinic that does the moldings for afo's to get him fitted for a new pair of AFO's. He will have the botox repeated every 4-6 months as needed. The casting (thankfully) will not need to be repeated every time he gets botox. He loves his bath so much and we can not give them to him and it breaks my heart plus I love a clean boy and he not so clean right now, I mean we give him a quick shower but that is not as good as a bath :)
Here are a few picture of the kiddos from the past month
Emmy having a rare moment and actually being sweet and giving Seth a kiss.
Playing on the trampoline...he loves the light that flashes when you bounce.
Ember trying to get out my moms doggie door.
Trying to touch the mini horse. She was so in love with it.
Seth playing with finger lights. They are his favorite thing right now!
On the way home from one of his appointments. He was so sleepy and oh so cute!
Syd riding a horse. She loves it so much and has so much fun!
Wednesday, February 1, 2012
Christmas Eve and Christmas!
So this year my parents went to Costa Rica over Christmas which is not out of the ordinary. We use to always go skiing when I was younger during Christmas so when they told me I was totally okay with it cause that is just normal for my side of the family.
On Christmas Eve my grandma had everyone over at her house and we did out gift exchange game and something I come out with something really good or just something so not cool. This year we got a barns and noble gift card and one other thing which I do not remember so that means it probably was not that great :) While we were drawing numbers Ember decided to vomit and it went on Steven which just made me laugh :) I thought maybe it was just a one time thing but she did it again a couple times the rest of the evening. Mike and I that night wrapped the gifts and put everything in the stockings and watched a christmas movie but right now I do not remember if it was Christmas with the Kranks or Elf. Either way I love both of them so I know it was a good night :)
CHRISTMAS morning we waited for the kiddos to wake up. Ember was the first one and she woke up with diarrhea everywhere and it just kept going all day so we knew that she had some type of virus. Seth was next at 8 and I got his food down him and medicine and he was ready for the day. Sydney didn't wake up till about 9am which is so not normal for her but she was so excited when she came out and saw that Santa had been here and ate some of the cookies. I love the age she is at and how she gets so involved with everything. We opened our gifts and Sydney got her most wanted item which was kookoo birds and puppies. She was so excited. Seth got a water mat and a toy that goes in the bathtub and attaches to the side and it has music and bubbles and he LOVES it. Embers biggest thing was the little people zoo. But the kids all got one big gift and it was a trampoline for the back yard. We set it up right before my parents left so they got it a little early but they all love it, especially Seth. He gets alone time out there and he just loves being out on it by himself. If we go out there with him then he LOVES to bounce.
We called grandma Lois around 10am and told her that Ember had a stomach bug but she came anyways. We opened gifts when she came and had a nice lunch and just hung out and watched some movies. She left around 5 and we just hung out the rest of the night. It was such a nice evening just hanging out and changing Ember's diaper every 30 min.
On Christmas Eve my grandma had everyone over at her house and we did out gift exchange game and something I come out with something really good or just something so not cool. This year we got a barns and noble gift card and one other thing which I do not remember so that means it probably was not that great :) While we were drawing numbers Ember decided to vomit and it went on Steven which just made me laugh :) I thought maybe it was just a one time thing but she did it again a couple times the rest of the evening. Mike and I that night wrapped the gifts and put everything in the stockings and watched a christmas movie but right now I do not remember if it was Christmas with the Kranks or Elf. Either way I love both of them so I know it was a good night :)
CHRISTMAS morning we waited for the kiddos to wake up. Ember was the first one and she woke up with diarrhea everywhere and it just kept going all day so we knew that she had some type of virus. Seth was next at 8 and I got his food down him and medicine and he was ready for the day. Sydney didn't wake up till about 9am which is so not normal for her but she was so excited when she came out and saw that Santa had been here and ate some of the cookies. I love the age she is at and how she gets so involved with everything. We opened our gifts and Sydney got her most wanted item which was kookoo birds and puppies. She was so excited. Seth got a water mat and a toy that goes in the bathtub and attaches to the side and it has music and bubbles and he LOVES it. Embers biggest thing was the little people zoo. But the kids all got one big gift and it was a trampoline for the back yard. We set it up right before my parents left so they got it a little early but they all love it, especially Seth. He gets alone time out there and he just loves being out on it by himself. If we go out there with him then he LOVES to bounce.
We called grandma Lois around 10am and told her that Ember had a stomach bug but she came anyways. We opened gifts when she came and had a nice lunch and just hung out and watched some movies. She left around 5 and we just hung out the rest of the night. It was such a nice evening just hanging out and changing Ember's diaper every 30 min.
Few days before Christmas on their trampoline
He loves it so much
My 5 year old!
She is so cute and so not matching :)
Syd and the gingerbread house we did together
Stockings hung
Christmas tree and presents
Opening her gifts
One of her favorites
We have yet to get this filled and she reminds us at least once a week
Seth opening his with help from daddy
...and Sydney
OHHHHHHH lights
His water mat
Eating some lunch...such a goof
Her new bike and she loves it.
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