We had a metabolics appointment last week, and Peanut was back up almost to where she was before she got sick last month. Hopefully by today she will be back to 30 pounds. We are going to discuss raising her calories a bit too. According to the diet that the dietician has her on, she gets about 600 calories a day. I know it's really low, but due to her metabolic disorder it's fine. We are going to bump it to 650 or 700 (by using more Polycose) probably. There's a fine line with her, between gaining slowly and healthily, not gaining at all, and gaining a TON too fast. We'll see how it goes!
We haven't seen any more seizure activity since Thursday night. Hopefully we won't, for a long time!!
We used to revel in the "new perfect" that was our life. Raising a beautiful girl with multiple special needs showed us that "perfect" is all in our minds. Emily's life was perfect. It was happy, it was brilliant. She was social, outgoing, silly, and ticklish. Now we are learning to get through life without our "Perfect Peanut" in it. This is most certainly NOT a new kind of perfect.
Monday, August 31, 2009
Saturday, August 29, 2009
I am crying my eyes out as I sit here ....
I have never met Shannon in real life, I have only read her blog. I have followed on her beautiful daughter Josie, and her amazing daugher Marie who was born with Leigh's Disease. I have waited impatiently to hear of their third daughter being born.
When I logged on to her blog this evening to see if the baby made her appearance, I was shocked to read the news. Sarah Kate was born Thursday morning, and then Marie passed away peacefully in her sleep the next morning.
I cannot even imagine. My heart is literally aching, I am typing through streaming tears. Please pray for their family as they try to deal with the bliss and happiness of a new baby, along with the heartache of loss.
When I logged on to her blog this evening to see if the baby made her appearance, I was shocked to read the news. Sarah Kate was born Thursday morning, and then Marie passed away peacefully in her sleep the next morning.
I cannot even imagine. My heart is literally aching, I am typing through streaming tears. Please pray for their family as they try to deal with the bliss and happiness of a new baby, along with the heartache of loss.
Neuro updates
I love our neurologist. He is a private practice, and he doesn't take insurance. It's the only doctor we pay to see, and he is worth every penny. Yesterday he was closing his office at 11:30, because he is leaving for vacation for a week today. He had us come in at 11:30 and stayed a whole hour talking with us! There is never a rushed feeling with this doctor, and he is so personable and caring. We love him!
So. He says that the seizure was most likely a generalized seizure. The odd thing is that her hands weren't involved, but he thinks that the hypoplastic corpus callosum might be messing with electrical pathways, so her arms were spared. We looked at her old EEG results, because they have always showed spiking in certain areas. He said that those areas would explain the seizure for sure, it would involve the same movements and appearances.
She has been on a low dose of Neurontin for years, ordered by the GI. It helps with her gut hypersensitivity, and lowers retching and gagging. He is upping the Neurontin to a full epileptic dose, since she tolerates the drug well with no side affects. Most seizure meds have side affects that we want to avoid if possible. He also gave us Diastat to keep with her at all times and at school.
Our rules now are that if she seizes again for more than three minutes, I am to administer Diastat and call 911. If she seizes for less than 3 minutes I am to call him and let him know, but no need to call 911.
Being that this is her first seizure, we are doing an EEG. I have to call Monday to schedule it. He says that although they said she had a UTI, it was probably caused by the heat. It has been almost 100 degrees here, and she just doesn't tolerate that. We are going to my parents house today, they have AC.
Please pray that the seizure was a one time thing. It was so scary, and I felt so helpless!!
So. He says that the seizure was most likely a generalized seizure. The odd thing is that her hands weren't involved, but he thinks that the hypoplastic corpus callosum might be messing with electrical pathways, so her arms were spared. We looked at her old EEG results, because they have always showed spiking in certain areas. He said that those areas would explain the seizure for sure, it would involve the same movements and appearances.
She has been on a low dose of Neurontin for years, ordered by the GI. It helps with her gut hypersensitivity, and lowers retching and gagging. He is upping the Neurontin to a full epileptic dose, since she tolerates the drug well with no side affects. Most seizure meds have side affects that we want to avoid if possible. He also gave us Diastat to keep with her at all times and at school.
Our rules now are that if she seizes again for more than three minutes, I am to administer Diastat and call 911. If she seizes for less than 3 minutes I am to call him and let him know, but no need to call 911.
Being that this is her first seizure, we are doing an EEG. I have to call Monday to schedule it. He says that although they said she had a UTI, it was probably caused by the heat. It has been almost 100 degrees here, and she just doesn't tolerate that. We are going to my parents house today, they have AC.
Please pray that the seizure was a one time thing. It was so scary, and I felt so helpless!!
Friday, August 28, 2009
Update
The episode itself was weird. She was asleep, totally asleep. Her legs would kick wildly and violently for five or ten seconds, then she would arch her back, and her lips would pucker. She'd be fine for 30-60 seconds, and then do it again. At first we didn't think much of it, but then it kept happening.
I tried waking her up by talking to her, undressing her, wiping her face with a cold wet washcloth. She hates getting her face wet or wiped. Nothing would wake her up, and when I lifted her eyelids her eyes weren't normal. Her pupils are normally huge, they look dialated. Last night they were tiny pinpoint pupils. Hardly anything there. She wouldn't wake up for anything, she was totally limp and non-responsive.
When the ambulance got her, the seizures were over but she was still unconcious. Her breathing never stopped, she didn't turn blue, but they put her on oxygen because her breathing was shallow. They loaded her on the stretcher and off we went. When she started waking up, she was still non-responsive, but awake. She wouldn't look at anyone, when she looked in my direction there was no response. It was scary. :(
Ten minutes after getting in the ER, she was fine. Back to normal, just tired. We did tests and they came back with a UTI. They decided that the infection is what spurred the seizure, in combination with the fact that it was over 90 degrees yesterday and she doesn't regulate her temp well.
They sent us home per the neurologist, and we are going to his office first thing this morning. He told the ER doctor he's going to start her on seizure meds and we'll talk about what testing to do.
It was horribly scary. In all her years and through all her issues, I've never had to call 911 for her. Never had an ambulance ride. It was bad. :(
Please pray that it was a one time thing, and that the neuro today reassures me enough that I'm comfortable. Right now I don't want to let her out of my sight for a minute, I'm so scared!
I tried waking her up by talking to her, undressing her, wiping her face with a cold wet washcloth. She hates getting her face wet or wiped. Nothing would wake her up, and when I lifted her eyelids her eyes weren't normal. Her pupils are normally huge, they look dialated. Last night they were tiny pinpoint pupils. Hardly anything there. She wouldn't wake up for anything, she was totally limp and non-responsive.
When the ambulance got her, the seizures were over but she was still unconcious. Her breathing never stopped, she didn't turn blue, but they put her on oxygen because her breathing was shallow. They loaded her on the stretcher and off we went. When she started waking up, she was still non-responsive, but awake. She wouldn't look at anyone, when she looked in my direction there was no response. It was scary. :(
Ten minutes after getting in the ER, she was fine. Back to normal, just tired. We did tests and they came back with a UTI. They decided that the infection is what spurred the seizure, in combination with the fact that it was over 90 degrees yesterday and she doesn't regulate her temp well.
They sent us home per the neurologist, and we are going to his office first thing this morning. He told the ER doctor he's going to start her on seizure meds and we'll talk about what testing to do.
It was horribly scary. In all her years and through all her issues, I've never had to call 911 for her. Never had an ambulance ride. It was bad. :(
Please pray that it was a one time thing, and that the neuro today reassures me enough that I'm comfortable. Right now I don't want to let her out of my sight for a minute, I'm so scared!
Took an ambulance ride to the ER
My girl has never had a seizure before, but her EEG's showed spikes indicating the potential for seizures. I've been told she will have seizures at some point, and we've been lucky so far.
Not anymore. She had a 45 minute on and off episode and then was unconcious. Neuro said to call 911. We did blood and urine work, and for some reason chest xrays?
The ambulance brought us to the closest ER, so now that's awake and back to baseline we are waiting to be transported to children's hospital. They're going to do an mri or ct as soon as we get there.
Please pray for my Peanut. I am so scared about seizures!
Not anymore. She had a 45 minute on and off episode and then was unconcious. Neuro said to call 911. We did blood and urine work, and for some reason chest xrays?
The ambulance brought us to the closest ER, so now that's awake and back to baseline we are waiting to be transported to children's hospital. They're going to do an mri or ct as soon as we get there.
Please pray for my Peanut. I am so scared about seizures!
Tuesday, August 25, 2009
Boring updates are the best
Not much going on here, which is fabulous! :) Peanut is doing fine, everything is stable and good right now. She's back on boluses of baby food three times a day, and formula overnight. She is doing well with it. Little retching, and it really seems to agree with it. Her blood sugar levels stay much more normal in between feedings when it's baby food. Also her BM's are back to normal. When we went back to just formula, she was pooping non-stop. Now she's back to her normal constipation needing Miralax. LOL Funny the things that we call "normal"! :)
She has a metabolics appointment tomorrow. I am nervous about her weigh-in, but what can you do. I'm sure she's gained back some of what she lost last month. Cross your fingers!
Not much else going on here. Two more weeks until school starts. I actually have a ton to do before then, but day by day, it will get done.
I am taking Monkey to Disneyland on Friday, we are going to turn our summer passes into annuals. YAY! Tomorrow night I have dinner with my book club, that is always relaxing and fun. :)
I hope you are all doing well. Thanks for checking in on us, even when there's not much going on!
She has a metabolics appointment tomorrow. I am nervous about her weigh-in, but what can you do. I'm sure she's gained back some of what she lost last month. Cross your fingers!
Not much else going on here. Two more weeks until school starts. I actually have a ton to do before then, but day by day, it will get done.
I am taking Monkey to Disneyland on Friday, we are going to turn our summer passes into annuals. YAY! Tomorrow night I have dinner with my book club, that is always relaxing and fun. :)
I hope you are all doing well. Thanks for checking in on us, even when there's not much going on!
Saturday, August 22, 2009
Meeting Lacey and Jaxson today!
(EDITED - We're meeting tomorrow instead. Still excited!)
I am so excited, Peanut and I are meeting Jaxson and his family at the pier for lunch today!! They wanted to go to the beach while in SoCal. Unfortunately the weather is gloomy and cool, so I don't know how much fun they will have. It will still LOOK beautiful! I can't wait to see Jaxson. And shhhhh, but Peanut has a little present for him. :)
I am so excited, Peanut and I are meeting Jaxson and his family at the pier for lunch today!! They wanted to go to the beach while in SoCal. Unfortunately the weather is gloomy and cool, so I don't know how much fun they will have. It will still LOOK beautiful! I can't wait to see Jaxson. And shhhhh, but Peanut has a little present for him. :)
Thursday, August 20, 2009
Owie. I had my second set of epidural spinal injections this morning. The nerves at the base of my spine are all up in arms, affecting my lower back and my right leg. The first injection worked great for about two weeks. This time the doctor went into a different area, that should work better. It hurts like H*&( right now, I can't even bend over. I remember from last time that this pain will last a day or two. Hopefully relief will be here by this weekend!
Having a special needs kiddo who doesn't walk is killer on your back.
Wednesday, August 19, 2009
Results are in.
Somehow the transport guy took us the wrong way when he got us from our hospital room. We had to go through the halls of the operating rooms. We had to cover up with blankets and sheets, and hair nets. (Okay, so we put the hair nets back on in the pre-op area for the photo LOL) We could not contaminate the halls. Who knows why he took us this way? It surely made for a cute photo and some lovely comments from passerbyers. :)
The night leading up to the MRI, my Peanut managed to sleep better than she does normally at home. She wasn't on any new meds or anything, I think she was just worn out from the traumatic IV start. And yes, the blanket she is covered with is the work of Lacey, from Jaxson's Blankies. :)
In true Peanut style, her MRI results are NORMAL. NoRmAl!! No tethered cord, no syrinx, no chiari malformation! This is great news because it means she doesn't need any sort of spine or brain surgery. YAY! Of course, it's not great news because it means that the problems that are worsening are a sign of her underlying neuromuscular disorder, which is undiagnosed. Her neurogenic bladder worsening, the hydronephrosis, the ankle clonus getting significantly worse, the tightening of her ankle muscles. All now have no explanation. :( But, no brain or spinal surgery!
The night leading up to the MRI, my Peanut managed to sleep better than she does normally at home. She wasn't on any new meds or anything, I think she was just worn out from the traumatic IV start. And yes, the blanket she is covered with is the work of Lacey, from Jaxson's Blankies. :)
In true Peanut style, her MRI results are NORMAL. NoRmAl!! No tethered cord, no syrinx, no chiari malformation! This is great news because it means she doesn't need any sort of spine or brain surgery. YAY! Of course, it's not great news because it means that the problems that are worsening are a sign of her underlying neuromuscular disorder, which is undiagnosed. Her neurogenic bladder worsening, the hydronephrosis, the ankle clonus getting significantly worse, the tightening of her ankle muscles. All now have no explanation. :( But, no brain or spinal surgery!
Monday, August 17, 2009
No results yet
I am going to call the neurology office tomorrow, they should have the results by now. It's been a full week!
I finally got some information from the nurse at the urology office. Peanut's surgery is scheduled for Sept. 29th. She should be inpatient anywhere from 2-5 days, depending on how soon she tolerates feeds afterward. That makes me think it will be at least 5 days. LOL
She will have a catheter in the Mitrofanoff stoma for 10 days before we use it, to allow it to heal. She will also have a suprapubic catheter in for three weeks. If the Mitrofanoff is healing and working fine, it will be removed at the three week mark. I asked the nurse if she is allowed to go to school with the s/p catheter in, and she said she wasn't sure. I guess she's going to ask the doctor and get back to me.
So she will come home with two urinary catheters, one in the Mitrofanoff in her belly button and one just below it coming out of her belly. I assume this means to urinary bags attached. What fun!
Peanut's birthday is about 2.5 weeks after her surgery. We will do a small family birthday dinner on the date, but we are going to postpone her bigger party for another few weeks. I want to be sure she's comfortable and able to enjoy it.
Not much is going on right now. As I like to say, boring is great! :) I will update as soon as I hear the MRI results.
Thanks for always checking in on us!!
I finally got some information from the nurse at the urology office. Peanut's surgery is scheduled for Sept. 29th. She should be inpatient anywhere from 2-5 days, depending on how soon she tolerates feeds afterward. That makes me think it will be at least 5 days. LOL
She will have a catheter in the Mitrofanoff stoma for 10 days before we use it, to allow it to heal. She will also have a suprapubic catheter in for three weeks. If the Mitrofanoff is healing and working fine, it will be removed at the three week mark. I asked the nurse if she is allowed to go to school with the s/p catheter in, and she said she wasn't sure. I guess she's going to ask the doctor and get back to me.
So she will come home with two urinary catheters, one in the Mitrofanoff in her belly button and one just below it coming out of her belly. I assume this means to urinary bags attached. What fun!
Peanut's birthday is about 2.5 weeks after her surgery. We will do a small family birthday dinner on the date, but we are going to postpone her bigger party for another few weeks. I want to be sure she's comfortable and able to enjoy it.
Not much is going on right now. As I like to say, boring is great! :) I will update as soon as I hear the MRI results.
Thanks for always checking in on us!!
Tuesday, August 11, 2009
Home again, home again!
Peanut's MRI went smoothly. It took a full two hours, and she was sedated with Propofal, the same drug that Michael Jackson took at home. The anesthesiologist and I talked about that, it was quite funny.
The overnight stay was no fun, but it never is. Peanut slept well that night actually, but of course I didn't. She did good, she woke up pissed off from the anesthesia like normal. She screamed and thrashed for a good hour. I hate that part. :(
Hopefully the MRI results will be in quickly!
The overnight stay was no fun, but it never is. Peanut slept well that night actually, but of course I didn't. She did good, she woke up pissed off from the anesthesia like normal. She screamed and thrashed for a good hour. I hate that part. :(
Hopefully the MRI results will be in quickly!
Friday, August 7, 2009
Biopsy results
Thank heavens, the nodules in my breast are "just cysts"! Hallelujah!!!
Peanut has her spine MRI on Monday. I am SO anxious for this, I cannot wait to hear the results. This is the test that was recommended to us by the doctors at the microcephaly convention. I hope that something fixable shows up, that might help my Peanut!
Because she has to be NPO for 8 hours, and the MRI is scheduled at 8am on Monday, we have to be admitted Sunday night. She can't go anywhere near 8 hours NPO. So we will go in at 8pm on Sunday, and get hydration all night. Off to the MRI, fully sedated for at least an hour, head to recovery, and then home. Hopefully the results will be in quickly after that!
Thanks for checking in on us. I really appreciate it!
Peanut has her spine MRI on Monday. I am SO anxious for this, I cannot wait to hear the results. This is the test that was recommended to us by the doctors at the microcephaly convention. I hope that something fixable shows up, that might help my Peanut!
Because she has to be NPO for 8 hours, and the MRI is scheduled at 8am on Monday, we have to be admitted Sunday night. She can't go anywhere near 8 hours NPO. So we will go in at 8pm on Sunday, and get hydration all night. Off to the MRI, fully sedated for at least an hour, head to recovery, and then home. Hopefully the results will be in quickly after that!
Thanks for checking in on us. I really appreciate it!
Thursday, August 6, 2009
Does anyone have extra lancets or test strips?
Our insurance is denying them because Peanut has not been diagnosed with diabetes. She does have documented hypoglycemia because of her metabolic disorder. When I checked her blood today before hooking up her feeding pump, she was down to 57. It had only been 2 hours and 45 minutes since her last bolus of pedialyte!
Our friend gave us 10 test strips and 10 lancets. To buy more is expensive! Does anyone happen to have any laying around? We could desperately use them!
Our friend gave us 10 test strips and 10 lancets. To buy more is expensive! Does anyone happen to have any laying around? We could desperately use them!
Is it only Thursday? I need a weekend. :)
UPDATE! Her blood sugars are to be checked before her 16 hour continuous feed, 8 hours into it, and 2 hours after it ends. Of course, the pharmacy says the insurance needs pre-authorization because she's not taking any diabetic medications. Hmm .. because she's not diabetic perhaps? Pre-auth will take at least 72 hours. Good thing a friend was able to give me some test strips and lancets to use!
She has lost weight, down to 28 pounds. :( She was 31.
I am frustrated with everything medical right now. I'm ready for a margarita now!
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The biopsy wasn't as bad as I thought it was going to be. The novacaine burned a LOT, and for some reason they used novacaine with epinephrine so my heart was racing for a little bit. Other than the horrible sound of the biopsy needle gun thingy, it was okay after that. Luckily for me, my breasts are still mostly numb from my reduction last year, so I am not hurting today. I return on Friday to have the site looked at by the nurse and to get the biopsy results. Cross your fingers!
Today I take Peanut to the GI. Good thing, because she has massive diarrea. Ick, I hate even typing that word! I went in this morning to find her sitting in her bed with it everywhere. I wanted to puke! If I don't give her the Miralax she doesn't poop for days on end. If I give it to her, she poops horribly. She's really retchy today too. The poor kid can't get a break!
We are supposed to pick up her blood sugar monitor from the metabolics clinic while we are there. I hate that. :(
I am going out to dinner with my PTO board tonite, so at least I have margaritas to look forward to!
She has lost weight, down to 28 pounds. :( She was 31.
I am frustrated with everything medical right now. I'm ready for a margarita now!
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The biopsy wasn't as bad as I thought it was going to be. The novacaine burned a LOT, and for some reason they used novacaine with epinephrine so my heart was racing for a little bit. Other than the horrible sound of the biopsy needle gun thingy, it was okay after that. Luckily for me, my breasts are still mostly numb from my reduction last year, so I am not hurting today. I return on Friday to have the site looked at by the nurse and to get the biopsy results. Cross your fingers!
Today I take Peanut to the GI. Good thing, because she has massive diarrea. Ick, I hate even typing that word! I went in this morning to find her sitting in her bed with it everywhere. I wanted to puke! If I don't give her the Miralax she doesn't poop for days on end. If I give it to her, she poops horribly. She's really retchy today too. The poor kid can't get a break!
We are supposed to pick up her blood sugar monitor from the metabolics clinic while we are there. I hate that. :(
I am going out to dinner with my PTO board tonite, so at least I have margaritas to look forward to!
Tuesday, August 4, 2009
Ultrasound guided core needle biopsy
My left boob (sorry for the word, I normally call them my STUPID boobs LOL) was fine on the mammogram. My right boob however was not. You know, the boob that were did NOT have concerns with. It showed a small nodule, under one of my incision lines from my reduction. The radiologist said it was probably attached to the skin and was scar tissue, but wanted to do an ultrasound to be safe. The ultrasound actually showed that it's two nodules, and they are not attached to the skin. The radiologist said this is probably not scar tissue then, and it's rather concerning.
Tomorrow morning I go in for an ultrasound guided core needle biopsy. She explained that this hollow needle thing will chunk out rice size samples of my boob's interior. That the needle makes a click noise similar to an ear piercing gun. ACK! I am a nervous wreck. Not so much about the results (I'm convinced it's just some result of last year's breast reduction), but of this stupid biopsy procedure.
I wish I had someone to hold my hand! Luckily my parents are home from vacation now so my Mom can watch the kids while I go.
Fun times!
Monday, August 3, 2009
Lots of appointments coming up
Peanut's MRI is scheduled for next Monday, the 10th. They expect it will take at least an hour, and she will be under general anesthesia. Because of the anesthesia, she has to be NPO from midnight on. The problem is that with her metabolic disorder, she can't go that long without hydration. The MRI is scheduled at 8am, they want her checked in at 6:30am. Since she needs IV's before then, we have to check in at 3am! Holy smokes. YAWN!
I have a mammogram today. I am only 34. I had a massive breast reduction last summer, literally 10.5 pounds removed. Because of this I have tons of scarring issues. A month after the reduction, I had a mass the size of a tennis ball removed from my left breast. Now my left nipple is weird, and my doctor is really concerned. So I am going in for a mammogram and possibly ultrasounds. I am terrified! Everyone tells me that the smaller your breasts are, the worse it is. I am barely a C cup now. On top of that, my breasts still hurt easily! I am NOT excited about this afternoon.
I have to take Peanut to a GI appointment on Thursday, and her blood sugar monitor is supposed to be ready for me to pick up at the same time. Yay.
Cathy, you asked about the Mitrofanoff. We are scheduled for September 29th, but are on a waiting list for cancellations. I am actually eager to do this and get it over with.
There is so much to do in the next few weeks. I scheduled my first PTO board meeting this Thursday night. I am President next year, and there is a lot to do before school starts. Our budget from last year is a mess, and we need to schedule lots of events. And before you ask, YES I am crazy. LOL
We are waiting for our home health nurse supervisor visit right now. She is late of course. I just hope that our nurse shows up on time today! She tends to be late, and it wouldn't be good if she's late the day her supervisor is here doing a visit.
Off to vacuum and fold laundry. Does it ever end? I could do laundry every day and still have more to do the next day. I need a laundry fairy. :)
I have a mammogram today. I am only 34. I had a massive breast reduction last summer, literally 10.5 pounds removed. Because of this I have tons of scarring issues. A month after the reduction, I had a mass the size of a tennis ball removed from my left breast. Now my left nipple is weird, and my doctor is really concerned. So I am going in for a mammogram and possibly ultrasounds. I am terrified! Everyone tells me that the smaller your breasts are, the worse it is. I am barely a C cup now. On top of that, my breasts still hurt easily! I am NOT excited about this afternoon.
I have to take Peanut to a GI appointment on Thursday, and her blood sugar monitor is supposed to be ready for me to pick up at the same time. Yay.
Cathy, you asked about the Mitrofanoff. We are scheduled for September 29th, but are on a waiting list for cancellations. I am actually eager to do this and get it over with.
There is so much to do in the next few weeks. I scheduled my first PTO board meeting this Thursday night. I am President next year, and there is a lot to do before school starts. Our budget from last year is a mess, and we need to schedule lots of events. And before you ask, YES I am crazy. LOL
We are waiting for our home health nurse supervisor visit right now. She is late of course. I just hope that our nurse shows up on time today! She tends to be late, and it wouldn't be good if she's late the day her supervisor is here doing a visit.
Off to vacuum and fold laundry. Does it ever end? I could do laundry every day and still have more to do the next day. I need a laundry fairy. :)
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