Today Sophie was to have her ASD closure performed at Mercy St. Vincent's in Toledo. We arrived at 6 am and at 7:30 we were taken down tot he cath lab.
The ride was all to familiar. I was on the bed with Sophie and heading down the ramp we put our hands in the air like we were riding the roller coasters at Cedar Point. Something we did last year as well. We try to make the best of these situations.
At 8 am Dr. Butto arrived and Sophie had fallen asleep in my arms. My baby girl didn't even cry for food today. He said he was going to go in, do his best, and he would see us when he was finished.
Around 9 a nurse came out and told us that he gained access in through her veins through her legs.
Around 10 she came back out and said that Dr. Butto was taking measurements.
About 10:30 she came out again and said he was attempting to put the device in place.
Not much after 11 she came to get us saying he was finished and that he would talk with us now. We headed back to the lab. We were excited because we really thought that the surgery went so well, no hiccups, and he finished in just over 3 hours.
We go in to the lab and Dr. Butto has a smile on his face. This smile I believe is permanent. It is there with good news and bad. The next thing he said....the hole was too big and he couldn't do it.
Sophie is now going to be having open heart surgery at U of M. We aren't sure when this is going to take place, but it will be soon. The pressure in her lungs is between 60 - 70 and her first surgery, it was around 40 and he thought that was high.
In recovery Sophie didn't wake up too well from the anesthesia. She was really groggy, in pain it seemed, and just not waking up normally. The doctor ordered Morphine. So, Sophie slept and slept and slept. When she finally started to wake up around 3:30 we tried to give her pedalyte, formula and she didn't want any of it. Then she took about 1 ounce of apple juice.
Sophie was still not awake and the really needed her to eat more. Because she wasn't eating they gave Sophie fluids through her iv.
At 6:30 they said as long as we were comfortable we could take her home but that if we weren't they would keep her. By 7 we were out of there.
We have been home about an hour and she has taken 3 ounces of formula. Yay Soph!
I will keep you posted as we take this journey, together!
Thursday, August 23, 2012
Tuesday, August 7, 2012
Signs of Normalcy
Yes, you read correctly! Sophie had her follow up EEG on Friday. This was the first one since they started her on the steroids. It was a 2 hour EEG and then entire time, on and off, I was TELLING God that He needed to make her EEG better this time around. I told Him I couldn't take anymore of these meds or I was going to lose it.
Well, prayers answered. The doctor came in and told me that it was good news and then she showed me Sophie's EEG from July and then this one and it was like night and day. I almost started crying, I was overcome with joy and relief.
Not only was it better, I was told that they even saw signs of normalcy and that was better than expected. We have now began the step down process for her steroids and it is going well. Sophie is still not happy and I was cautioned that she may not be for about another month. Small improvements every day make it easier to handle.
Sophie also has thursh. One more reason to not like the steroids. Doc. Nuga gave her nystatin. The day I gave it to her she kind of choked on it and then was horse and wheezy. I just thought a possible cold. Dan asked me to take her in because he was afraid of something worse. So, I did. Once we got there, waited 2 hours, we were seen and then rushed, by ambulance to Toledo Children's. I guess Soph just missed the nurses there. They rushed her in because her O2 level was in the 80's and her heart rate was 160. NOT a s good combination. We were admitted and they determined it was a "virus"! Right, ok. What they really meant to say was that they didn't know what was really wrong with her. Chest xrays were perfect, heart was good, and there wasn't anything in her throat showing something worse than her thrush. We were sent home on breathing treatments every 4 hours!
We are home. Sophie is cranky and still horse. She sees doc Nuga Friday so hopefully have answers. Sophie is scheduled for August 23rd for heart surgery and here is to believing that nothing gets in the way!
Oh, and I apologize for the spelling error on my last post. I am particular about that but I missed it. Don't be shocked if I missed in this one too, my computer is acting funny!
Well, prayers answered. The doctor came in and told me that it was good news and then she showed me Sophie's EEG from July and then this one and it was like night and day. I almost started crying, I was overcome with joy and relief.
Not only was it better, I was told that they even saw signs of normalcy and that was better than expected. We have now began the step down process for her steroids and it is going well. Sophie is still not happy and I was cautioned that she may not be for about another month. Small improvements every day make it easier to handle.
Sophie also has thursh. One more reason to not like the steroids. Doc. Nuga gave her nystatin. The day I gave it to her she kind of choked on it and then was horse and wheezy. I just thought a possible cold. Dan asked me to take her in because he was afraid of something worse. So, I did. Once we got there, waited 2 hours, we were seen and then rushed, by ambulance to Toledo Children's. I guess Soph just missed the nurses there. They rushed her in because her O2 level was in the 80's and her heart rate was 160. NOT a s good combination. We were admitted and they determined it was a "virus"! Right, ok. What they really meant to say was that they didn't know what was really wrong with her. Chest xrays were perfect, heart was good, and there wasn't anything in her throat showing something worse than her thrush. We were sent home on breathing treatments every 4 hours!
We are home. Sophie is cranky and still horse. She sees doc Nuga Friday so hopefully have answers. Sophie is scheduled for August 23rd for heart surgery and here is to believing that nothing gets in the way!
Oh, and I apologize for the spelling error on my last post. I am particular about that but I missed it. Don't be shocked if I missed in this one too, my computer is acting funny!
Sunday, July 29, 2012
Where Has My Sweet Gril Gone?
Oh, Presidolone, how I loathe thee! Seriously, I hate this medication. It has taken my sweet little princess and turned her in to the evil step sisters, worse than the evil step sisters on Cinderella! To top it all off, Sophie is teething and is just inconsolable!
Speaking of Sophie, I hear her waking from yet another nap. It seems that all she does is EAT (she has doubled her food intake), sleep, and cry.
On Friday, August 3rd, Sophie and I are headed back to U of M Neurology for another EEG. They are going to see if the steroids are working. Please pray they are! Even if they want to continue her on steroids, I am not going to let it happen. There are other ways of treating it, and if need be, we will take a different course.
Sophie had a follow up at her heart doctor 2 weeks ago and he said that she is extremely close to missing the opportunity to close her ASD with a device. He is scheduling her surgery for August 23rd in hopes that Neuro will sign off on her. If they don't, I am sure we will be at U of M so Sophie can have open heart surgery.
So, I ask this from all of you (because I have a friend that told me I needed to. Since she reads this, I need to listen) please be in prayer in the following ways:
The meds are working and Sophie's EEG has improved. With that, pray that because of the improvement she will be developing more mentally as we move forward.
That we are able to have Sophie's surgery in Toledo on August 23rd using a device. Pray for all involved. The nurses, ALL the doctors, everyone.
Pray for my sanity. I am truly closing in on my wits end. I am not sure how much more I can take of Sophie just being miserable ALL OF THE TIME!
Pray for Dan and I also as we are starting to get pissed off when people update their FB status with FML (F*** My Life) all because they have a flat tire, or they say they are "special ed", or "retarded" because they did something stupid. Last time I checked Special Ed doesn't mean stupid. I can tell everyone of a little girl who has had a pretty crappy start to her 16 months of life, yet she still puts a smile on her face, when she's not on steroids that is! :) I guess we just need to let it roll off our shoulders because we know that we just can't fix stupid people!
Also, we go to court on August 13th for Sophie's SSI. We were denied the first time. I believe they are going to deny us again because they think we make too much money. Seriously, too much money? How about the fact that I can't even take my child to a day care center because they don't want the risk that she brings. Or, I can't work a full week of work because I have to take her to several doctor appointments. Funny thing is, they just look at your hourly rate, not the expense you have of living!
Ok, now that I have that off my chest. Thank you all for the support you have shown my family as we are moving along this thing we call life. I am truly blessed to have all of you on Sophie's team, rooting her on, rooting me on. With all of the things we have against us, we have some pretty amazing things going for us as well.
I love you more than you know!
Go Team Sophie!
Speaking of Sophie, I hear her waking from yet another nap. It seems that all she does is EAT (she has doubled her food intake), sleep, and cry.
On Friday, August 3rd, Sophie and I are headed back to U of M Neurology for another EEG. They are going to see if the steroids are working. Please pray they are! Even if they want to continue her on steroids, I am not going to let it happen. There are other ways of treating it, and if need be, we will take a different course.
Sophie had a follow up at her heart doctor 2 weeks ago and he said that she is extremely close to missing the opportunity to close her ASD with a device. He is scheduling her surgery for August 23rd in hopes that Neuro will sign off on her. If they don't, I am sure we will be at U of M so Sophie can have open heart surgery.
So, I ask this from all of you (because I have a friend that told me I needed to. Since she reads this, I need to listen) please be in prayer in the following ways:
The meds are working and Sophie's EEG has improved. With that, pray that because of the improvement she will be developing more mentally as we move forward.
That we are able to have Sophie's surgery in Toledo on August 23rd using a device. Pray for all involved. The nurses, ALL the doctors, everyone.
Pray for my sanity. I am truly closing in on my wits end. I am not sure how much more I can take of Sophie just being miserable ALL OF THE TIME!
Pray for Dan and I also as we are starting to get pissed off when people update their FB status with FML (F*** My Life) all because they have a flat tire, or they say they are "special ed", or "retarded" because they did something stupid. Last time I checked Special Ed doesn't mean stupid. I can tell everyone of a little girl who has had a pretty crappy start to her 16 months of life, yet she still puts a smile on her face, when she's not on steroids that is! :) I guess we just need to let it roll off our shoulders because we know that we just can't fix stupid people!
Also, we go to court on August 13th for Sophie's SSI. We were denied the first time. I believe they are going to deny us again because they think we make too much money. Seriously, too much money? How about the fact that I can't even take my child to a day care center because they don't want the risk that she brings. Or, I can't work a full week of work because I have to take her to several doctor appointments. Funny thing is, they just look at your hourly rate, not the expense you have of living!
Ok, now that I have that off my chest. Thank you all for the support you have shown my family as we are moving along this thing we call life. I am truly blessed to have all of you on Sophie's team, rooting her on, rooting me on. With all of the things we have against us, we have some pretty amazing things going for us as well.
I love you more than you know!
Go Team Sophie!
Wednesday, July 11, 2012
Surgery Cancelled....Again!
As you know, we were called to go to U of M on Friday, July 6th for a follow up for Sophie in Neurology. They wanted to do a 2hr. EEG so they could get a better read as to what is happening in Sophie's brain. The results, to say the least, we unexpected. Unexpected because we have been giving her anti-seizure medication and she had been doing well.
Sophie has Hypsarrhythmia. The definition, taken from Wikipedia is below:
Hypsarrhythmia is an abnormal interictal
pattern, consisting of high amplitude and irregular waves and spikes in
a background of chaotic and disorganized activity seen on electroencephalogram (EEG), frequently encountered in an infant diagnosed with infantile spasms,
although it can be found in other conditions. In simpler terms, it is a
very chaotic and disorganized brain electrical activity with no
recognizable pattern, whereas a normal EEG shows clear separation
between each signal and visible pattern.
Exciting, right! This is apparent when Sophie is awake and even more so when she is sleeping. You should see the EEG, it isn't pretty!
So, what do we do from here? Great question! Dr. Dang (works with Dr. Leber) has put Sophie on a HIGH dosage of steroids which is supposed to give her brain back the structure that it needs in order for Sophie to develop mentally and start doing the things she is supposed to, even with MWS. We will revisit in 1 month with another EEG and clinical follow up.
In the meantime, Soph is on this medication 3x a day along with an antibiotic 3x daily every M,W,F as well as medication for acid reflux because her steroids will give her more acid. Just what Sophie needs. Sophie has been more irritable and it has only been 4 days. What we need to watch for is that this medication attacks Sophie's immune system so if you are sick in ANY way, please don't ask to see my child. She absolutely can't be around anyone that is sick, even if it is JUST a runny nose. Just a runny nose to Sophie on this medication can result in much worse for her. This medication can also cause a rare lung infection, which is the reason she is on the antibiotic.
If you recall, Sophie was on Keppra, which is an anti-seizure medication. The prescription was written by the ER doc at Bixby and we dropped it off immediately at CVS in Adrian. Sophie has been taking this medication for 1 month and on Friday our doctor realized that she has been getting 10x the amount needed!! Needless to say, but I am going to say it anyways, CVS in Adrian has been overdosing my baby for 1 month. They completely messed up her dosage and all they have said is, it happens, we are sorry! Really? WTH? You could have killed my child and all you have to say is "It Happens"? Luckily, for Sophie, this medication is what they consider a "safe" one and all of her levels have come back normal. We currently have to gradually take Sophie off this medication. Sophie has enough going on that is out of everyone's control, the last thing she needs is for someone else to cause issues for her!
With all of this said, Sophie's heart doctor, Dr. Butto, has cancelled her surgery once again. He believes that Neuro has the lead and once this is taken care of we will reschedule her surgery. This pushes Sophie even closer to having Open Heart Surgery because our window of opportunity keeps getting smaller and smaller!
Sorry, this is a lot of information. Once I started, I couldn't stop. Besides Sophie being irritable she is fantastic and she even has her 1st tooth! We were so excited, I mean it has taken her 15 months to get it. We were going to celebrate with Spaghetti, but Sophie didn't want anything to do with anyone! Ah, this is just for a month, right?
Thursday, June 28, 2012
July 23rd
Surgery has been rescheduled for July 23rd. Dr. Butto is still going to try and use the device to close the ASD and if successful, we won't have to endure the open heart surgery.
Sophie is amazing. She is so resilient. It is like nothing ever happened and she is happier than ever! The medicine Sophie is on, Keppra, has a 1 in 3 chance of making Sophie extremely irritable. PTL that Sophie wasn't that1....so far. The reason I say so far is because it has only been 2 weeks. 2 weeks isn't a lot of time for that medicine to be in her system.
We just increased Sophie's dosage from 4ML 2x daily to 8ML 2x daily. I am hoping that this increase isn't going to affect her either. Time will tell.
In the mean time, Sophie has started at a new baby sitter. We are truly blessed to have someone with a child that has the same syndrome as Sophie living only 5 minutes away. Cynthia has graciously agreed to watch Little Miss for us. It isn't that our other sitter wasn't good with Sophie, but this is just a better fit for Sophie. Cynthia knows how to work with Sophie in her therapy and what to watch for in regards to seizures. For that, I am thankful.
For Obama Care, I am not thankful! Had to throw that in there.
Sophie spent her early afternoon in a pool with Cynthia, Lukus, and Mattie. Luckily, Cynthia gets my humor when I tell her that if anything happens to Sophie, she dies! :)
Shane just finished up his regular season of baseball. They will have 1 week off and then go in to a play-off game to determine their ranking. Their ranking isn't so great but Shane played on a team where they were taught to play the game fair and clean, not dirty like some of the others. Shane has turned out to be quite the catcher and we are proud of him. He has taken quite a few hits at home base as well and every time, he just stands right back up.
Have a wonderful day and stay cool.
Sophie is amazing. She is so resilient. It is like nothing ever happened and she is happier than ever! The medicine Sophie is on, Keppra, has a 1 in 3 chance of making Sophie extremely irritable. PTL that Sophie wasn't that1....so far. The reason I say so far is because it has only been 2 weeks. 2 weeks isn't a lot of time for that medicine to be in her system.
We just increased Sophie's dosage from 4ML 2x daily to 8ML 2x daily. I am hoping that this increase isn't going to affect her either. Time will tell.
In the mean time, Sophie has started at a new baby sitter. We are truly blessed to have someone with a child that has the same syndrome as Sophie living only 5 minutes away. Cynthia has graciously agreed to watch Little Miss for us. It isn't that our other sitter wasn't good with Sophie, but this is just a better fit for Sophie. Cynthia knows how to work with Sophie in her therapy and what to watch for in regards to seizures. For that, I am thankful.
For Obama Care, I am not thankful! Had to throw that in there.
Sophie spent her early afternoon in a pool with Cynthia, Lukus, and Mattie. Luckily, Cynthia gets my humor when I tell her that if anything happens to Sophie, she dies! :)
Shane just finished up his regular season of baseball. They will have 1 week off and then go in to a play-off game to determine their ranking. Their ranking isn't so great but Shane played on a team where they were taught to play the game fair and clean, not dirty like some of the others. Shane has turned out to be quite the catcher and we are proud of him. He has taken quite a few hits at home base as well and every time, he just stands right back up.
Have a wonderful day and stay cool.
Thursday, June 14, 2012
Surgery Cancelled
As you know, Sophie was supposed to have her heart surgery done today. Well, things didn't go as planned. My apologies for not letting you all know sooner, but things have been hectic around here and all I have wanted to do it hold Sophie. When I am not holding her I am checking on her every other minute.
I came home from work on Wednesday, the one day I was able to work this week, and Dan said Sophie had been screaming the entire day and refused to sleep. Dan hadn't slept either because our sitter's son had strep and I couldn't send Sophie. Sophie was lying on the floor and she wasn't crying. Dan said she had stopped a few minutes before I came home. I sat on the floor with her and she really didn't seem to care. I noticed her Nystagmus was worse than normal (eyes rapidly moving back and forth) but Sophie also hadn't been the same since her seizure on Saturday. All of a sudden Sophie just didn't seem responsive and the right side of her body was jerking. Leg and arm. Uncontrollably. I told Dan something wasn't right. He tried to get her to respond and she wouldn't. Sophie was breathing but it was shallow.
Dan and I rushed her to the ER. Sophie was having a pretty bad seizure. We arrived at the hospital and I demanded they get us in immediately. They complied. Of course it had nothing to do with the fact that there wasn't anyone else around. :) Once they got Sophie to a bed they started the IV in her left arm and it blew. Luckily, there was a nurse there that we had on Saturday and he was able to get the IV on Sophie on his first try. Not heard of with her. He took it and put it in her right arm and he was SO good with her. Talking to her in such a calm, soothing voice. I felt like he truly cared about my child. I so wish I could remember his name.
Once the IV went it the immediately gave Soph adavan and I had already had a call in to her neurologist. By the time the IV went in and the meds started, it had been 25 minutes that Sophie had been seizing. It was the scariest thing I have ever experienced.
We were in the ER for a few hours, surgery was cancelled because she is not stable and Dan and I are terrified that this is going to put Sophie in the running for open heart surgery because they didn't have time to waste with her. We were sent home on Keppra, 2x a day. 4 ML for 2 weeks and then we bump it up to 8 ML for the rest of the time.
From what I hear there is a 1 in 3 chance that Sophie will become extremely irritable. As my wonderful friend, Shandra, put it...the way Murphy's Law has been working with us lately, Sophie will be the 1. I am so thankful for honest friends. I am also thankful that she knows my daughter so well and loves her so much.
Sophie finally really woke up around 11 today where she wasn't so groggy and she actually interacted and smiled. That did our hearts good.
Dan and I are terrified. Shane wasn't here, luckily, and we are just trying to put on foot in front of the other because to be completely honest, we don't know our left from our right at this point. I don't know what is next, I don't know when heart surgery is and I don't know when and if I will ever sleep again.
I can't bring myself to pray right now because I am so pissed off at God that praying isn't something I can do right now. So, I am asking you to do it for me. All I can do is scream and cuss at Him. Luckily, for me, He understands and knows I will get over it...eventually. Right now, in this very moment, I don't want to get over it. My family has been through more in the past 3 years that most people ever have to experience. It isn't fair, I don't understand. I am tired of hearing that God sure knew what He was doing when He gave Sophie to us. She is just extra special, she just needs extra love. All I want to say is SHUT THE FUCK UP. YOU THINK THAT WE ARE JUST THAT SPECIAL TO GOD THAT WE GET TO HAVE BABIES DIE ON US AND THEN HAVE ONE THAT IS MENTALLY IMPAIRED. REALLY? Last time I checked, special was a good thing. Special was a reward. I feel like I am being punished. Nothing about this is good or ok. Sorry, I am just being completely honest right now.
Once I know more I will update you. At this point, I am just waiting. Waiting for the doctor to call, waiting for my daughter to not be so sleepy, and waiting for her to have another seizure.
I came home from work on Wednesday, the one day I was able to work this week, and Dan said Sophie had been screaming the entire day and refused to sleep. Dan hadn't slept either because our sitter's son had strep and I couldn't send Sophie. Sophie was lying on the floor and she wasn't crying. Dan said she had stopped a few minutes before I came home. I sat on the floor with her and she really didn't seem to care. I noticed her Nystagmus was worse than normal (eyes rapidly moving back and forth) but Sophie also hadn't been the same since her seizure on Saturday. All of a sudden Sophie just didn't seem responsive and the right side of her body was jerking. Leg and arm. Uncontrollably. I told Dan something wasn't right. He tried to get her to respond and she wouldn't. Sophie was breathing but it was shallow.
Dan and I rushed her to the ER. Sophie was having a pretty bad seizure. We arrived at the hospital and I demanded they get us in immediately. They complied. Of course it had nothing to do with the fact that there wasn't anyone else around. :) Once they got Sophie to a bed they started the IV in her left arm and it blew. Luckily, there was a nurse there that we had on Saturday and he was able to get the IV on Sophie on his first try. Not heard of with her. He took it and put it in her right arm and he was SO good with her. Talking to her in such a calm, soothing voice. I felt like he truly cared about my child. I so wish I could remember his name.
Once the IV went it the immediately gave Soph adavan and I had already had a call in to her neurologist. By the time the IV went in and the meds started, it had been 25 minutes that Sophie had been seizing. It was the scariest thing I have ever experienced.
We were in the ER for a few hours, surgery was cancelled because she is not stable and Dan and I are terrified that this is going to put Sophie in the running for open heart surgery because they didn't have time to waste with her. We were sent home on Keppra, 2x a day. 4 ML for 2 weeks and then we bump it up to 8 ML for the rest of the time.
From what I hear there is a 1 in 3 chance that Sophie will become extremely irritable. As my wonderful friend, Shandra, put it...the way Murphy's Law has been working with us lately, Sophie will be the 1. I am so thankful for honest friends. I am also thankful that she knows my daughter so well and loves her so much.
Sophie finally really woke up around 11 today where she wasn't so groggy and she actually interacted and smiled. That did our hearts good.
Dan and I are terrified. Shane wasn't here, luckily, and we are just trying to put on foot in front of the other because to be completely honest, we don't know our left from our right at this point. I don't know what is next, I don't know when heart surgery is and I don't know when and if I will ever sleep again.
I can't bring myself to pray right now because I am so pissed off at God that praying isn't something I can do right now. So, I am asking you to do it for me. All I can do is scream and cuss at Him. Luckily, for me, He understands and knows I will get over it...eventually. Right now, in this very moment, I don't want to get over it. My family has been through more in the past 3 years that most people ever have to experience. It isn't fair, I don't understand. I am tired of hearing that God sure knew what He was doing when He gave Sophie to us. She is just extra special, she just needs extra love. All I want to say is SHUT THE FUCK UP. YOU THINK THAT WE ARE JUST THAT SPECIAL TO GOD THAT WE GET TO HAVE BABIES DIE ON US AND THEN HAVE ONE THAT IS MENTALLY IMPAIRED. REALLY? Last time I checked, special was a good thing. Special was a reward. I feel like I am being punished. Nothing about this is good or ok. Sorry, I am just being completely honest right now.
Once I know more I will update you. At this point, I am just waiting. Waiting for the doctor to call, waiting for my daughter to not be so sleepy, and waiting for her to have another seizure.
Sunday, June 10, 2012
The 1st of Many to Come
Yesterday, the doctors, Dan, and myself believe Sophie had her very 1st seizure. Usually we celebrate firsts, but not this one. We knew it was coming, but with everything we have read and heard from the doctor, we didn't anticipate it happening already.
I was helping set up for my sister's bridal shower. Around 11 am my grandmother and sister-in-law was playing with Sophie, fed her, and then Sophie was really fussy so I took her from my grandmother and all of a sudden Sophie went limp, he eyes rolled back in her head father than I have ever seen and he lips went blue. I had to "slap" her back to focus on me and I just felt in my heart that it was indeed a seizure. Sophie slept the rest of the day. She woke up for a couple of 30-45 minute installments where she was fed, but then she puked it up. Sorry, Faith!
I talked to my friend Kate, her daughter has a rare form of epilepsy, and she told me what I needed to do. I called Sophie's heart doctor and he told us that he believed it was a seizure and not cardiac related. He advised us to call her peds doctor. Dr. Adenuga was on call so I was able to speak with him. Dr. Nuga advised us that we needed to bring her in so she could be evaluated. I hesitated because I didn't want to do it, I didn't want to believe this was all happening.
Dan, Shane, Sophie and I sat down for dinner and Sophie had just woken up again. I gave her a bottle. After 1 ounce Sophie lips turned blue and she puked again. I left immediately and took her to Bixby. Once we arrived Sophie was rushed right in. There were 4 nurses and 1 doctor around Sophie all at the same time. I was impressed at how quickly they moved with her. Sophie was given an IV and she was such a trooper. The man who did it got it on the first try. That has never happened with Soph! She only fussed for a moment until I have her the rest of her bottle and she was happy. Dan got there and he was trying to comfort Sophie who was mostly mad at the fact that she couldn't put her arm behind her head with it being tapped to a board with her IV. He couldn't calm her down. I took her, we stood up and swayed back and forth. Puke....again. I was covered. Sophie slept after that.
U of M peds neurology was called and they are going to call me Monday to get Sophie is either Monday or Tuesday. I will be up there Monday so say some prayers that they can get her in that afternoon. Sophie is going to be so mad at me Monday because it is going to be a long day. Peds Neuro is going to have to clear Sophie for surgery on Thursday. Her surgery can't wait. Please believe with me that everything will stay according to plan.
Today Sophie is tired. This morning she was doing motor boats and babbling. She is now sleeping. I am going to go take her out of her car seat and cuddle with her the rest of the day. She sure knows how to keep me on my toes.
I was helping set up for my sister's bridal shower. Around 11 am my grandmother and sister-in-law was playing with Sophie, fed her, and then Sophie was really fussy so I took her from my grandmother and all of a sudden Sophie went limp, he eyes rolled back in her head father than I have ever seen and he lips went blue. I had to "slap" her back to focus on me and I just felt in my heart that it was indeed a seizure. Sophie slept the rest of the day. She woke up for a couple of 30-45 minute installments where she was fed, but then she puked it up. Sorry, Faith!
I talked to my friend Kate, her daughter has a rare form of epilepsy, and she told me what I needed to do. I called Sophie's heart doctor and he told us that he believed it was a seizure and not cardiac related. He advised us to call her peds doctor. Dr. Adenuga was on call so I was able to speak with him. Dr. Nuga advised us that we needed to bring her in so she could be evaluated. I hesitated because I didn't want to do it, I didn't want to believe this was all happening.
Dan, Shane, Sophie and I sat down for dinner and Sophie had just woken up again. I gave her a bottle. After 1 ounce Sophie lips turned blue and she puked again. I left immediately and took her to Bixby. Once we arrived Sophie was rushed right in. There were 4 nurses and 1 doctor around Sophie all at the same time. I was impressed at how quickly they moved with her. Sophie was given an IV and she was such a trooper. The man who did it got it on the first try. That has never happened with Soph! She only fussed for a moment until I have her the rest of her bottle and she was happy. Dan got there and he was trying to comfort Sophie who was mostly mad at the fact that she couldn't put her arm behind her head with it being tapped to a board with her IV. He couldn't calm her down. I took her, we stood up and swayed back and forth. Puke....again. I was covered. Sophie slept after that.
U of M peds neurology was called and they are going to call me Monday to get Sophie is either Monday or Tuesday. I will be up there Monday so say some prayers that they can get her in that afternoon. Sophie is going to be so mad at me Monday because it is going to be a long day. Peds Neuro is going to have to clear Sophie for surgery on Thursday. Her surgery can't wait. Please believe with me that everything will stay according to plan.
Today Sophie is tired. This morning she was doing motor boats and babbling. She is now sleeping. I am going to go take her out of her car seat and cuddle with her the rest of the day. She sure knows how to keep me on my toes.
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