So Waverly has been hanging on to this sickness since my last post. It's almost been two weeks now. Still lots of coughing, secretions, some sneezing, etc. Her fever only lasted a few days, and she hasn't had one since. The seizures are better too, although she's had some times of seeming just neurologically agitated. But we've seen a few smiles here and there too, so that's good! So, it's been almost two weeks now of lots of extra care, even for her. We've been very aggressive with breathing treatments every 3-4 hours including nebulizer with albuterol, saline, or pulmicort, vest treatments, and cough assist machine (a new machine). There's also lots of suctioning after all that, plus anytime she coughs or sneezes. She's not sleeping very well, so we've also been having to get up a good bit to suction her throughout the night, especially starting around 4a.m. after she's been laying down for a several hours through the night. We're often up with her for several hours from that time on (which often means up for the day for whoever is up with her). She's also been on oxygen pretty much 24/7 for these past 12 days, ranging anywhere from 1/2 liter to 3 liters. She also finished a course of antibiotics and is on a 5-day course of prednisone to try to help with the lung congestion too.
For about a week now she's been holding steady. She's not getting any better, but she's not getting any worse wither. So, we've just been keeping her at home, watching her closely, lots of care, and waiting for improvement. We took her today for a chest x-ray just to be safe, and they said it looked ok. So, there's the latest update. We're praying that she can kick this bug soon and be all the way better soon!
Tuesday, December 11, 2012
Sunday, December 2, 2012
Change of Plans-x2
I realize I have been terrible to update these past few weeks. I'll blame it on a baby who has thrown all kinds of things at us, a full time job, a bout with appendicitis, two older kids (who are still really quite young and needy), and just daily life.
My last update was 2 weeks ago, when we started her on Ketocal. That very day, maybe by coincidence since she woke up this way, she was a different kid. Super smiley, cooing lots, not sleepy, etc. She was so cute and fun! However, it was almost too much...she couldn't nap at all during the day, and by the time the evening came she just cried and cried because she couldn't sleep at night either. This went on for 3 full days, until finally, that third night, in the wee hours of the morning, I gave her her seizure rescue med diastat, in hopes of helping sedate her and break the brain wave pattern that was causing her to not be able to rest. After about an hour, it worked, and since then she's been somewhere in the middle: not as many Infantile Spasms (Praise God!), smiley during the day, but still able to sleep when she needs to (for naps and at night).
We have noticed an improvement in her IS too, which is great. So the plan was to have her slowly starting on the Ketogenic diet here at home for two weeks, and go to DC to get her up to full strength the week of December 3.
Well, last Thursday she started coughing and coughing. Then came the secretions and fever. Then the seizures. And she's been a very sick little girl since then. So, plans have once again changed, and we are not going to DC now. We feel she is too sick to make the trip. So far, we've managed to keep her home and out of the hospital, but I feel like she is still on the brink of having to be admitted here locally if she doesn't improve.
So, that's where we're at. It's quite frustrating and stressful to have plans keep changing continually. And also hard to keep everyone informed and to keep from getting confused! I'm not sure what the plan is at this point, but hopefully I will update when we figure it all out. In the meantime, you can pray that she will be restored to health, that she can avoid having to go to the hospital, and that we can continue to see an improvement in her seizures (once she gets over this sickness).
My last update was 2 weeks ago, when we started her on Ketocal. That very day, maybe by coincidence since she woke up this way, she was a different kid. Super smiley, cooing lots, not sleepy, etc. She was so cute and fun! However, it was almost too much...she couldn't nap at all during the day, and by the time the evening came she just cried and cried because she couldn't sleep at night either. This went on for 3 full days, until finally, that third night, in the wee hours of the morning, I gave her her seizure rescue med diastat, in hopes of helping sedate her and break the brain wave pattern that was causing her to not be able to rest. After about an hour, it worked, and since then she's been somewhere in the middle: not as many Infantile Spasms (Praise God!), smiley during the day, but still able to sleep when she needs to (for naps and at night).
We have noticed an improvement in her IS too, which is great. So the plan was to have her slowly starting on the Ketogenic diet here at home for two weeks, and go to DC to get her up to full strength the week of December 3.
Well, last Thursday she started coughing and coughing. Then came the secretions and fever. Then the seizures. And she's been a very sick little girl since then. So, plans have once again changed, and we are not going to DC now. We feel she is too sick to make the trip. So far, we've managed to keep her home and out of the hospital, but I feel like she is still on the brink of having to be admitted here locally if she doesn't improve.
So, that's where we're at. It's quite frustrating and stressful to have plans keep changing continually. And also hard to keep everyone informed and to keep from getting confused! I'm not sure what the plan is at this point, but hopefully I will update when we figure it all out. In the meantime, you can pray that she will be restored to health, that she can avoid having to go to the hospital, and that we can continue to see an improvement in her seizures (once she gets over this sickness).
Saturday, November 17, 2012
Starting Ketocal
Today is the day. We are starting Ketocal in a slow initiation of the ketogenic diet. This was actually our original plan, as in my research I'd seen that kids tended to do better when they were able to start on the diet more slowly, allowing their bodies to get into ketosis more gradually (and just used to a different formula, etc.). However, when she started getting so much worse so quickly, and was seizing every waking moment, we changed our plans and moved forward with the hospital admission to start the diet quickly to try to control her seizures sooner since the slow initiation takes several weeks to get them into ketosis.
However, with me getting appendicitis and having to postpone her hospitalization to start the diet, her doctors and I decided it was best to go ahead with the original plan and go ahead and at least start introducing the formula to her. Then, in a few weeks when we do go up to get her to the full strength of the formula, she will be fully in ketosis. Then they can go ahead and do all the close monitoring and testing as she's on the full strength since that's the part they were concerned about her being at home anyway.
We will also do an MRI while we're up there since her urologist wants an MRI of her spine to check if her spinal cord is tethered. So, we will take care of both things at once. The plan is to go up the week of December 3rd.
So these next two weeks please be in prayer as we start this process of embarking on this new treatment and starting this new formula. Pray that she tolerates the new formula well, and that her body tolerates this process of going into ketosis long term. Pray that the seizures respond to the treatment and that she gets relief.
She's had several days of a high dose of prednisone, and between that and being on cipro for her latest UTI, she's been much more awake and active this week, and her seizures have already decreased. She's not seizing every minute her eyes are open, which is a huge answer to prayer. I'm not sure if it was the prednisone or the better treatment for her UTI, but either way we are thankful for a slight reprieve.
However, with me getting appendicitis and having to postpone her hospitalization to start the diet, her doctors and I decided it was best to go ahead with the original plan and go ahead and at least start introducing the formula to her. Then, in a few weeks when we do go up to get her to the full strength of the formula, she will be fully in ketosis. Then they can go ahead and do all the close monitoring and testing as she's on the full strength since that's the part they were concerned about her being at home anyway.
We will also do an MRI while we're up there since her urologist wants an MRI of her spine to check if her spinal cord is tethered. So, we will take care of both things at once. The plan is to go up the week of December 3rd.
So these next two weeks please be in prayer as we start this process of embarking on this new treatment and starting this new formula. Pray that she tolerates the new formula well, and that her body tolerates this process of going into ketosis long term. Pray that the seizures respond to the treatment and that she gets relief.
She's had several days of a high dose of prednisone, and between that and being on cipro for her latest UTI, she's been much more awake and active this week, and her seizures have already decreased. She's not seizing every minute her eyes are open, which is a huge answer to prayer. I'm not sure if it was the prednisone or the better treatment for her UTI, but either way we are thankful for a slight reprieve.
Monday, November 12, 2012
Change of Plans
I am just realizing that I didn't get around to putting on here that we were planning on heading up to DC Children's Hospital on Monday (today) to start Waverly on the keto diet. Basically, we'd determined that she'd gotten so much worse so fast that we didn't have the luxury of doing it more slowly and needed to start her sooner. So the plan was to go up to be admitted for the week.
Well, those plans changed quickly. On Thursday I woke up and had terrible stomach pains. At first I thought it was anxiety and stress, but when the headache, temperature, and chills started, I figured it was a virus. By Saturday morning I was still feeling terrible, could hardly get out of bed (which is NOT like me), and was getting nervous about the trip to DC for the week that was looming 48 hours away. Since I needed to know what to do and if I'd be ok to be 5 hours away from home alone with a baby in the hospital, I begrudgingly went to the doctor. He immediately sent me to the ER, where I was diagnosed with appendicitis. I had surgery that evening, and have been home since yesterday recovering.
That's about all I've got for now. I am very frustrated at this turn of events, as this was NOT in my plan, but am trying to trust God that His plan is bigger and better, even if it does mean that my baby is not getting the treatment I though she needed at this moment. Please continue to pray that we are able to figure out a suitable time to try it again, and that God would sustain her little body until then. She's been on prednisone again which has seemed to help alleviate some of the seizures, although she still has them all the time. Also please pray for my quick healing and recovery. I am not able to lift her until I fully heal, so that's very difficult.
Well, those plans changed quickly. On Thursday I woke up and had terrible stomach pains. At first I thought it was anxiety and stress, but when the headache, temperature, and chills started, I figured it was a virus. By Saturday morning I was still feeling terrible, could hardly get out of bed (which is NOT like me), and was getting nervous about the trip to DC for the week that was looming 48 hours away. Since I needed to know what to do and if I'd be ok to be 5 hours away from home alone with a baby in the hospital, I begrudgingly went to the doctor. He immediately sent me to the ER, where I was diagnosed with appendicitis. I had surgery that evening, and have been home since yesterday recovering.
That's about all I've got for now. I am very frustrated at this turn of events, as this was NOT in my plan, but am trying to trust God that His plan is bigger and better, even if it does mean that my baby is not getting the treatment I though she needed at this moment. Please continue to pray that we are able to figure out a suitable time to try it again, and that God would sustain her little body until then. She's been on prednisone again which has seemed to help alleviate some of the seizures, although she still has them all the time. Also please pray for my quick healing and recovery. I am not able to lift her until I fully heal, so that's very difficult.
Thursday, November 8, 2012
Waverly at 18 months!!!
Our sweet girl is 18 months old today! She really is starting to look less and less like a baby and more and more like a big girl now!
She's really had a hard time with her health lately, struggling with lots of UTIs, respiratory junk, and the return of the nasty Infantile Spasms. So in many of her recent pictures, she's sleeping, since she spends much of her day doing that now. But she still takes an awfully cute picture!
Thankfully, even though she's struggled so badly with the return of the IS, she still has some personality left that we get to see occasionally. We treasure those little glimpses. They don't occur every day, but on the days that they do, we are so thankful.
Here she is with her "talking face" one day.
She got a super cute owl hat at the mall the other weekend. It's perfect for fall!
One night she was so sleepy that she didn't even wake up for her bath!
But she was awake this time, and enjoyed "swimming" in the tub with her neck ring.
Another very sleepy picture! Zonked out for sure!
We have been able to enjoy lots of sweet snuggles with her being so sleepy. Most nights I sit and rock with her and just enjoy the sweet snuggles she gives. It's a time I treasure for sure!
Waverly by the numbers:
Weight: ~22.5 lbs
Height: ~30 inches
Daily Medications: at least 15
Weekly Medications: at least 105
Treatments: 2 vest sessions, Chest PT throughout the day, up to 4 nebulizer treatments, suctioning throughout the day
Oxygen: 0-3.5 liters depending on saturations
Sunday, November 4, 2012
Addendum, Ketogenic Diet Appointment, and Therapy
The last update was typed on my phone, and I tend not to be too wordy when typing on a small touchscreen keyboard.
I will be taking Waverly to the doctor tomorrow to get checked out. She was diagnosed with an ear infection last Sunday, and has been on antibiotics for that, after just having finished antibiotics the day before that for her latest UTI. She literally went straight from one antibiotic to another. :( Her ear still looks red to us though. We called the doctor on Friday and told him, but they said since she wasn't showing any other symptoms to wait and finish the meds and see. Her urine has also been smelling strongly the last several days, so I'm a little concerned about that as well. So, given her increase in seizure activity, and those two concerns, back to the doctor we will go.
I'm honestly quite nervous if she still has an infection of either one, as it means she's getting very resistant to the antibiotics. Of course, that's me worrying about something that is maybe not even true, so I know I need to let it go and just take what's in front of me and go one step at a time. But it's still hard not to worry about the what if's.
We are planning on trying the ketogenic diet to see if that helps with seizure control. See here for more information about the diet, but in short, it's a high fat/low carb/sugar diet. The science behind it is still unknown, but somehow it helps some children with epilepsy. There are risks associated with it, so we will have to monitor her closely, checking her blood glucose levels, ketone levels, and blood work. But for some children, the diet works really well to reduce or eliminate their seizures, and they are even able to reduce many of their seizure meds. We can see a huge effect of the medication on Waverly now, as she is very sleepy, very low tone, etc. So we have high hopes that if the diet works for her, we will be able to wean her off of some of her meds too.
We had to go up to DC Children's Hospital to meet with a neurologist and dietician up there who will be overseeing the keto diet for Waverly. They will work closely with her neurologist from UVA. The plan is to start the diet on Sunday, but depending on results from this week, we will see.
Finally, we are SO thankful for all the amazing outpouring of love and support that has been shown through our fundraising efforts for Waverly's therapy! I don't have a full total yet, but close to $1000 was raised! And we only did a few of the many suggested and offered fundraisers! We are so humbled and blessed! Unfortunately, with all of her latest troubles, we've decided to postpone any further therapy until we get her seizures better controlled. The therapist and I both agreed that with her constant seizures and infections, it was too hard on her to tax her body more. So, we have that money set aside for when she does get better to resume therapy. Her therapist has been wonderful and understanding, and we can't wait for Waverly to be healthy enough to start back up hopefully soon! We will certainly keep you posted on that.
Thanks for reading this long update and keeping up with our girl. She's certainly kept us very busy the past few months, and we are feeling the toll. We couldn't do it without all of your help and support, and so for that, we are very thankful!
I will be taking Waverly to the doctor tomorrow to get checked out. She was diagnosed with an ear infection last Sunday, and has been on antibiotics for that, after just having finished antibiotics the day before that for her latest UTI. She literally went straight from one antibiotic to another. :( Her ear still looks red to us though. We called the doctor on Friday and told him, but they said since she wasn't showing any other symptoms to wait and finish the meds and see. Her urine has also been smelling strongly the last several days, so I'm a little concerned about that as well. So, given her increase in seizure activity, and those two concerns, back to the doctor we will go.
I'm honestly quite nervous if she still has an infection of either one, as it means she's getting very resistant to the antibiotics. Of course, that's me worrying about something that is maybe not even true, so I know I need to let it go and just take what's in front of me and go one step at a time. But it's still hard not to worry about the what if's.
We are planning on trying the ketogenic diet to see if that helps with seizure control. See here for more information about the diet, but in short, it's a high fat/low carb/sugar diet. The science behind it is still unknown, but somehow it helps some children with epilepsy. There are risks associated with it, so we will have to monitor her closely, checking her blood glucose levels, ketone levels, and blood work. But for some children, the diet works really well to reduce or eliminate their seizures, and they are even able to reduce many of their seizure meds. We can see a huge effect of the medication on Waverly now, as she is very sleepy, very low tone, etc. So we have high hopes that if the diet works for her, we will be able to wean her off of some of her meds too.
We had to go up to DC Children's Hospital to meet with a neurologist and dietician up there who will be overseeing the keto diet for Waverly. They will work closely with her neurologist from UVA. The plan is to start the diet on Sunday, but depending on results from this week, we will see.
Finally, we are SO thankful for all the amazing outpouring of love and support that has been shown through our fundraising efforts for Waverly's therapy! I don't have a full total yet, but close to $1000 was raised! And we only did a few of the many suggested and offered fundraisers! We are so humbled and blessed! Unfortunately, with all of her latest troubles, we've decided to postpone any further therapy until we get her seizures better controlled. The therapist and I both agreed that with her constant seizures and infections, it was too hard on her to tax her body more. So, we have that money set aside for when she does get better to resume therapy. Her therapist has been wonderful and understanding, and we can't wait for Waverly to be healthy enough to start back up hopefully soon! We will certainly keep you posted on that.
Thanks for reading this long update and keeping up with our girl. She's certainly kept us very busy the past few months, and we are feeling the toll. We couldn't do it without all of your help and support, and so for that, we are very thankful!
Constant seizures
I will try to write more later, and have lots to update on, but this is just a quick plea for prayer. Waverly's Infantile Spasms have gotten way worse the past week and she is now seizing every waking moment. If she's not awake and seizing, then she's sleeping them off. And today she's had a couple instances where she's stopped breathing. She's also required oxygen more today. I'm not sure what's going on with her but I don't have a good feeling about it. So please just pray. I hope to get her to the doctor tomorrow.
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