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!!!!
The Marinellos
Saturday, March 31, 2012
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!
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