Wednesday, September 12, 2012
Prayers for a Friend
Good Morning! I received a message from a dear friend this morning asking for prayer. She is struggling. It is the same struggle I deal with almost on a daily basis. I ask you to remember her in prayer today. Below is the message she sent to me. I am not thankful for the difficulties that our daughters share, but I am thankful we can walk it together! I love you KEC!
"Today I am struggling. With anger. And sorrow. And grief. An acquaintance is having an ultra sound. She will likely find out she is carrying a healthy baby. She is unwed, not even in a committed relationship. She drank heavily through out the beginning of the pregnancy, smoked both cigarettes and pot. Not that I would EVER wish someone's baby be unhealthy. But, it hurts just the same. And I tell you because I know you have those days. I know you understand my pain and the place in my heart that hurts. Please pray for me today, and for the people I have to come into contact with. I am having a difficult time speaking with patience and love."
Let's life her up today!
Thursday, September 6, 2012
October 4th
October 4th is the date for Sophie's open heart surgery. It will be performed at U of M by Dr. Hirsch. I hear she is really good, let's hope and pray she is. Sophie will be in the hospital for 7-10 days and she will have a 4-6 week recovery time before she is back to normal.
My emotions:
Out of control
Terrified
Highly emotional
sick to my stomach
Head is throbbing
Can't stop crying
Worried
Other things going on:
Buying a house, closing on the 9th or before! Great timing huh!
Football for Shane
NO vacation time left because I have used it for Sophie's medical appointments/surgeries/hospital stays.
Ways to pray:
Sophie comes out of surgery doing well with no complications before, during, or after the surgery.
Sophie's recovery to be better than they expect.
Pray for all Doctors, Nurses, anesthesiologists, that will come in contact with Sophie.
That our finances are met with the lack of work that will be going on for both Dan and I for a few weeks.
That Shane will deal with his emotions through this as well. I know he is terrified as well.
Comfort for all of us.
Safe travels for those that will be heading to and from the hospital.
Closing on the house goes through without hiccups.
That's all I have for now. Love you!
My emotions:
Out of control
Terrified
Highly emotional
sick to my stomach
Head is throbbing
Can't stop crying
Worried
Other things going on:
Buying a house, closing on the 9th or before! Great timing huh!
Football for Shane
NO vacation time left because I have used it for Sophie's medical appointments/surgeries/hospital stays.
Ways to pray:
Sophie comes out of surgery doing well with no complications before, during, or after the surgery.
Sophie's recovery to be better than they expect.
Pray for all Doctors, Nurses, anesthesiologists, that will come in contact with Sophie.
That our finances are met with the lack of work that will be going on for both Dan and I for a few weeks.
That Shane will deal with his emotions through this as well. I know he is terrified as well.
Comfort for all of us.
Safe travels for those that will be heading to and from the hospital.
Closing on the house goes through without hiccups.
That's all I have for now. Love you!
Monday, August 27, 2012
Room 1517; Our Temporary Home
Good Morning! As I am typing this it is raining outside. It is dark and grey, sort of like how I am feeling inside this morning.
As you know from FB posts, Sophie wasn't doing too well with eating after her surgery. When I thought it was getting better, it wasn't.
Sophie is now at Toledo Children's Hospital, room 1517, because she is dehydrated. The doctor told us that her electrolytes showed sever dehydration. They currently have her on an IV and she can only have clear fluids until later this afternoon, early evening. Then we will see if she will take her formula.
I am at work this morning, just where I want to be...NOT, but we have a family to provide for and this job is what pays our bills, along with Dan's. My grandmother is with Sophie right now and then when Dan wakes up, around 1, he will head up there to be with her until I can get there this evening. I will stay the night again, and then leave from there for work. This will be our temporary home until Sophie decides to eat and her diarrhea subsides.
Yesterday they took stool samples from Sophie. They were testing her for C.diff infection. Sophie's visitors as well as nursers, and myself, had to wear gloves and gowns to even touch her. I am sure it wasn't comforting to Sophie not to even feel her mama's touch! Luckily, the test results came back negative so we don't have to "suit up" anymore.
I just called the hospital and they are working on getting Sophie to eat. She is definitely peeing now so they turned her fluids down. Let's hope and pray that helps her want to eat.
Thanks for all the prayers and concern and love for Sophie and the rest of us.
As you know from FB posts, Sophie wasn't doing too well with eating after her surgery. When I thought it was getting better, it wasn't.
Sophie is now at Toledo Children's Hospital, room 1517, because she is dehydrated. The doctor told us that her electrolytes showed sever dehydration. They currently have her on an IV and she can only have clear fluids until later this afternoon, early evening. Then we will see if she will take her formula.
I am at work this morning, just where I want to be...NOT, but we have a family to provide for and this job is what pays our bills, along with Dan's. My grandmother is with Sophie right now and then when Dan wakes up, around 1, he will head up there to be with her until I can get there this evening. I will stay the night again, and then leave from there for work. This will be our temporary home until Sophie decides to eat and her diarrhea subsides.
Yesterday they took stool samples from Sophie. They were testing her for C.diff infection. Sophie's visitors as well as nursers, and myself, had to wear gloves and gowns to even touch her. I am sure it wasn't comforting to Sophie not to even feel her mama's touch! Luckily, the test results came back negative so we don't have to "suit up" anymore.
I just called the hospital and they are working on getting Sophie to eat. She is definitely peeing now so they turned her fluids down. Let's hope and pray that helps her want to eat.
Thanks for all the prayers and concern and love for Sophie and the rest of us.
Thursday, August 23, 2012
Unsuccessful Attempt
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!
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!
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?
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