Saturday, April 30, 2011
Comments!
I just quickly wanted to inform everyone that I changed my comment settings. Anyone can leave a comment now and you won't have to jump through hoops! So now, I expect to see some comments!!!
Friday, April 29, 2011
UP's and down's....
I am so embarrassed!!! As much as I do love to write, it is apparent blogging is NOT my strong suit! Forgive me followers! I started this blog soon before Riley's orignal surgery date. I wanted to make sure I had a nice, comforting outlet for sharing my heart and keeping loved ones updated on Riley's status. Riley hasn't had any major medical changes so I haven't needed this outlet very much yet...and if I'm honest, there are many days I don't want to be reminded what we're faced with, with Riley's health.
But it has gone long enough without an update, so here I am! Galen is hard at work..at work! and Riley is taking a much needed nap snuggled under her baby quilt her Auntie Rachel made her (her eyes close so fast when the silky side touches her chubby cheeks!) So yes, MOMMY TIME!!!
After our visit with Riley's Cleveland Clinic surgeon, Dr. Bingamen, on April 5th, at which time her brain surgery was post-poned, we have enjoyed the somewhat laid back, normal lives we lead. That weekend Riley and I came down with a nasty head cold. Mine lasted a week but hers held on longer and a small raspiness is still lodged in her throat. We did end up taking her to a pediatrician just because we weren't sure if it could be something more and she was having trouble eating.
Continued Friday, April 29, 2011
Sorry about that interruption! Galen came home and whisked baby and I away for a little bit! I'm going to try my best to get a post up tonight (as long as hubby helps like he said! :) Ok, so where was I? Her pediatrician appointment when she was sick. So we left the dr's office relieved to hear that Riley's lungs were completely clear and it was just a typical, pesky cold she would have to naturally get over. Which she did sometime last weekend! It's nice to have her "healthy" again! One less thing we have to worry about!
While there, Dr. Strong checked Riley's growth chart. He was quite upset to see that Riley hadn't gained weight in almost 3 months. He instructed us on how to make her feedings more fattening. We add an extra half a scoop per scoop of formula. So for a 2 oz bottle where you would add 1 scoop of formula, we now add 1.5; for a 4oz bottle, 3 scoops and so on! Then we were instructed to return in two weeks for a weight check. That appointment was this past Tuesday. Not a good day, I can tell you! Galen asked if I could handle it alone. I assured him it wouldn't be a problem since it was just a little pediatrician appt. Ugh, I don't like the unexpected! Especially when I'm alone! ( I'll post what I shared on my Facebook that day..I'm sorry if this is "cheating" as a blogger but I really don't have a lot of extra time!)
....
But it has gone long enough without an update, so here I am! Galen is hard at work..at work! and Riley is taking a much needed nap snuggled under her baby quilt her Auntie Rachel made her (her eyes close so fast when the silky side touches her chubby cheeks!) So yes, MOMMY TIME!!!
After our visit with Riley's Cleveland Clinic surgeon, Dr. Bingamen, on April 5th, at which time her brain surgery was post-poned, we have enjoyed the somewhat laid back, normal lives we lead. That weekend Riley and I came down with a nasty head cold. Mine lasted a week but hers held on longer and a small raspiness is still lodged in her throat. We did end up taking her to a pediatrician just because we weren't sure if it could be something more and she was having trouble eating.
Continued Friday, April 29, 2011
Sorry about that interruption! Galen came home and whisked baby and I away for a little bit! I'm going to try my best to get a post up tonight (as long as hubby helps like he said! :) Ok, so where was I? Her pediatrician appointment when she was sick. So we left the dr's office relieved to hear that Riley's lungs were completely clear and it was just a typical, pesky cold she would have to naturally get over. Which she did sometime last weekend! It's nice to have her "healthy" again! One less thing we have to worry about!
While there, Dr. Strong checked Riley's growth chart. He was quite upset to see that Riley hadn't gained weight in almost 3 months. He instructed us on how to make her feedings more fattening. We add an extra half a scoop per scoop of formula. So for a 2 oz bottle where you would add 1 scoop of formula, we now add 1.5; for a 4oz bottle, 3 scoops and so on! Then we were instructed to return in two weeks for a weight check. That appointment was this past Tuesday. Not a good day, I can tell you! Galen asked if I could handle it alone. I assured him it wouldn't be a problem since it was just a little pediatrician appt. Ugh, I don't like the unexpected! Especially when I'm alone! ( I'll post what I shared on my Facebook that day..I'm sorry if this is "cheating" as a blogger but I really don't have a lot of extra time!)
....
And we go from bad to worse!
by Kamzin Faith Hostetler on Tuesday, April 26, 2011 at 2:13pm
Riley's follow-up pediatrician appointment, this afternoon, did not go well. Her dr is monitoring her weight and wanted to see her today after changing Riley's diet around a little, two weeks ago. We were both very disappointed when the scale weighed her in at 14lbs 1oz. She lost 8oz since our last visit. Granted she's been sick but he said he at least wanted her to remain the same weight even if she didn't gain any. It doesn't sound like that big of a deal, right? WRONG! She is going on her fourth month of not gaining. She has been in the 14 pounds for three months. Now her pediatrician is very concerned. There could be a few problems he's checking into, none of which I remember their fancy medical term. One has to do with her kidneys not functioning properly. They could be washing everything out including proteins to help her gain fat. There is a medication for that. Her thyroid might not be working well either. So poor, lil Riley had to have a catheter put in so they could draw some urine and then she had blood work drawn at the lab. We will know the results of those today. Ok here's the term (I looked it up)- Renal Tubular Acidosis. So by the end of today we will know if she has this condition and she'll get prescribed a medication for it. If the tests do not come back pointing towards this, we'll have to check her thyroid. Then towards the end he said two words I never thought I'd here- "feeding tube". I just cried. How much worse can this get?! I can't even honestly answer that, because I know this is just the beginning and it scares me to death. I feel like with each dr's appointment filled with negatives prognosises my worst fear is coming too close for comfort....losing her for good! Please pray for us, especially that Riley will EAT and gain lots of weight. You see, we're coming to a standstill. She NEEDS the brain surgery but they can't operate on her till she gains weight so something needs to change and we don't have a lot of time to stand around hoping they will on their own. My mama's heart is overwhelmed. It is soooo painful to watch your baby who you love more than anything, go through this.
That was my morning. Early that evening I did receive the call from her pediatrician's office with good news that Riley does NOT have RTA! YAY! We have another weight check in two weeks; May 10th. Come on fat rolls!!! Riley and I have the opposite problem with weight. I would gladly help her out by giving her some of mine, but, well, that's just not possible! So we'll work hard on helping her to gain while I do my best to shed my winter (just go with me here!) flubber! I am happy to report that her appetite has increased the last couple days. Our goal is to see at least 15 lbs on the scale at our next appointment! Please pray with us!
I would like to thank you all for your faithful prayers and support for Riley and our family. I'm telling you, they are felt and seen in our everyday lives! I stop sometimes when I feel we have a victory with Riley or I have that extra patience and endurance in that trying moment, and just KNOW God is answering your prayers. I love not feeling alone. But I have this huge amount of gratefulness to this one particular friend, her family and her church! Every time I talk to my dearest friend Rachel, she asks about our Riley, shares how they're praying and also tells me about her amazing church who continually ask for updates and who really, really cares for our Sweetie! I cannot tell you how this blesses me. Sometimes, it's hard for me to understand how folks who don't even know us could care so much about our trials. But I am overwhelmed with your love and thank God for you! So thank you so very much Rachel's pastor and church!!!!!
Riley ended Sabril (Vigabatrin) on Monday (April 25th) after 3 months of taking it. We are glad to see this seizure medication in particular go because of the dangers of sight impairment. It has only been FDA approved for one or two years, I believe, because of these dangers. There are also only a select few special pharmacies in the US that carry it, so it had to be mailed to our house each month. The cost was over a whopping two grand for one month's supply! Anyways, one's gone but another has taken it's place. Riley is now on the very strong seizure med, Topamax. (So Riley is taking three seizure meds at the time.) Thankfully we haven't seen any crazy side effects with this new one. But we are still increasing it, and will continue until the full dosing in a couple weeks. Ugh! I guess this is our life..in this life anyway. I must be honest. Having a child with an incurable disease makes sin and the consequences very real. I've thought back to Adam and Eve a lot lately. That's when sin was introduced and all the ugly and evil of life with it. It's not just snakes and lamb-eating lions, but sickness and disease and thus suffering. I have a much more heavenly focused mindset now. This life stinks. I'm glad to be alive, yes, but it's like a pot-hole full of stagnant water. (That's the analogy that came to mind...and yes, our post winter roads need help bad!) So, bottom line, having a sick child with a future unknown makes me look heavenward and focus on His promises.
I'm going to skiddadle, head to the kitchen, snap my fingers and try to make the dirty supper dishes disappear! Hostetler love to you all! ~ Kam
That was my morning. Early that evening I did receive the call from her pediatrician's office with good news that Riley does NOT have RTA! YAY! We have another weight check in two weeks; May 10th. Come on fat rolls!!! Riley and I have the opposite problem with weight. I would gladly help her out by giving her some of mine, but, well, that's just not possible! So we'll work hard on helping her to gain while I do my best to shed my winter (just go with me here!) flubber! I am happy to report that her appetite has increased the last couple days. Our goal is to see at least 15 lbs on the scale at our next appointment! Please pray with us!
I would like to thank you all for your faithful prayers and support for Riley and our family. I'm telling you, they are felt and seen in our everyday lives! I stop sometimes when I feel we have a victory with Riley or I have that extra patience and endurance in that trying moment, and just KNOW God is answering your prayers. I love not feeling alone. But I have this huge amount of gratefulness to this one particular friend, her family and her church! Every time I talk to my dearest friend Rachel, she asks about our Riley, shares how they're praying and also tells me about her amazing church who continually ask for updates and who really, really cares for our Sweetie! I cannot tell you how this blesses me. Sometimes, it's hard for me to understand how folks who don't even know us could care so much about our trials. But I am overwhelmed with your love and thank God for you! So thank you so very much Rachel's pastor and church!!!!!
Riley ended Sabril (Vigabatrin) on Monday (April 25th) after 3 months of taking it. We are glad to see this seizure medication in particular go because of the dangers of sight impairment. It has only been FDA approved for one or two years, I believe, because of these dangers. There are also only a select few special pharmacies in the US that carry it, so it had to be mailed to our house each month. The cost was over a whopping two grand for one month's supply! Anyways, one's gone but another has taken it's place. Riley is now on the very strong seizure med, Topamax. (So Riley is taking three seizure meds at the time.) Thankfully we haven't seen any crazy side effects with this new one. But we are still increasing it, and will continue until the full dosing in a couple weeks. Ugh! I guess this is our life..in this life anyway. I must be honest. Having a child with an incurable disease makes sin and the consequences very real. I've thought back to Adam and Eve a lot lately. That's when sin was introduced and all the ugly and evil of life with it. It's not just snakes and lamb-eating lions, but sickness and disease and thus suffering. I have a much more heavenly focused mindset now. This life stinks. I'm glad to be alive, yes, but it's like a pot-hole full of stagnant water. (That's the analogy that came to mind...and yes, our post winter roads need help bad!) So, bottom line, having a sick child with a future unknown makes me look heavenward and focus on His promises.
I'm going to skiddadle, head to the kitchen, snap my fingers and try to make the dirty supper dishes disappear! Hostetler love to you all! ~ Kam
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| Our Pretty Spring Flower! |
Wednesday, April 6, 2011
Riley's Surgical Change of Plans (taken from my Facebook page)
Well, I arrived home an hour ago from being out-and-about all day. After coming in the door, I immediately sat down at the computer. I typed up half my update but while trying to copy it, I hit a wrong button and POOF! It was gone! Grrrr! I believe that's happened to everyone one time or another, so I don't have to tell you how aggravating it is!
Ok. So we arrived at our appointment scheduled for 2pm. They lead us to a room where the nurse practitioner working with the surgeon, filled us in on what they had planned for our Riley. We had made this decision without knowing too many details. Just that we didn't have many options out there and it was necessary if we wanted Riley to develop normally in these vital first years of her life. We were also given the green light by our very trusted pediatric neurologist. Saying that it was a good idea and the sooner the better. So anyways, I had set a date to have this consultation with her surgical team a couple weeks ago. While we were on the phone, I hastily set a date for surgery because there was a spot open and we didn't know how long the waiting list was. Now you can see how little we knew and why we were so shocked to hear what they planned for our peanut!
Back to the nurse practitioner in the small exam room..so we're sitting there and she fills us in that they are planning a hemispherectomy! That is where they remove half the brain!!!! Yes, my jaw dropped too! Here's a link http://www.epilepsy.com/epilepsy/hemispherectomy which explains it in one paragraph pretty closely to how it was explained to us. They did specify cutting the connections to the other side of her brain which is supposed to eliminate the seizures. The success rate is 80 to 90%. So after hearing how they were planning on doing this (which is, by the way, the most severe of all brain surgeries or so the NP said) all my fear and anxiety came back. After talking to a brain surgery veteran at church on Sunday, I was so calm and at peace. After this little talk? Not so much!
Ok it is seriously late, and my little bunny just went to sleep so I have to wrap this up and do the same. Bottom line, she (NP) explained and answered our overabundance of questions as best she could. (Riley would be in the NICU 3 to 4 days. Then to a monitoring unit for another 7. She would lose her peripheral vision..maybe more eyesight and most likely never drive. Her left hand would always be a "helper hand".) She left the room, and Galen and I just looked at each other and sighed. A little while later the surgeon himself came in. He was nice enough. Asked a lot of questions and then shared something we didn't know. Riley is 14lbs 8oz. She has at most 450 cc's of blood coursing through her body which is about half a Pepsi bottle. He went on to explain, he would easily lose all that blood during the surgery. He's had 0 fatalities on his operating table and he wants to keep it that way..(yeah we're 200% with you there, Doc!) So in conclusion, she needs to weigh at LEAST 20 lbs. The more weight the better. They fear blood loss, but also a major temperature drop. There was no needing to convince us! We will live with seizures for now over not having her living at all. Major duh! But I was soooo thankful for their attentiveness and honestly! That's one big reason I love Cleveland Clinic. They give you the pros and cons, their opinion and ask you yours, but in the end it's not about numbers or money, it's about the patient!
I also have not shared with you that Riley has been seizure free for 6 days!!! That's huge! Her last time was coming out of the hospital after her first stay in Jan. She was SF for 9 days. So lets see if we can beat that! They did just change her meds up a week ago which is why we're having this reprieve. But I'm going to be positive and relish it!!!
So our plan with her surgical team is to hold off if posiible till July. Then instead of the hemispherectomy, start with something smaller. Simply removing that lesion on her right brain and see if that takes care of them for awhile. There's always the possibilty of more surgeries down the road. But due to Riley's age and weight we need to proceed with the utmost caution. So that about sums it up. If her seizures get out of control like January then we'll have no choice but to schedule a surgery and pray for the best. But we can thank God because at the time, they're not life-threatening and she doesn't spend a lot of time in the hospital.
Alright this mama's signing off. I have that feeling I forgot something. Oh well ..ask questions if you have them, maybe I'll remember. So bottom line, it's not a "no" for surgery, just a "not now''. July will be here before we know it but in the meantime I will enjoy my daughter's huge smiles, giggles, and growing hair!!! Love, Love, LOVE you my dearies! Good night and as always THANK YOU!
Saturday, April 2, 2011
A History Lesson
The Birth of our Pink Blessing
It only seems fitting, since I'm starting something new with writing this blog about my daughter, her battle with TSC, and my heart as her mama, that I should start at the very beginning when this crazy, unplanned journey began. My beautiful daughter, Riley Elizabeth, was born September 24, 2010 at 10:24am after a long, complicated labor ending in a cesarean. My very first thought when I saw my baby girl was "Wow. She is BEAUTIFUL!" Not just because she was mine but because she actually was a very pretty baby and I was expecting the "wrinkled old man" look my dad had warned me about! My second thought and question was "Is she ok?" Meaning is she breathing? Does she have all ten fingers and toes? Is she fully developed? With my husband's reassuring "Yes! She's perfect!!" response I allowed myself to relax and just bask in the pure joy of having my precious angel delivered safe and sound. Little did I know, as I laid there being stitched up while they whisked my baby away with my husband following, that she was far from ok. There, being hidden under vernix-covered baby skin,were three tumors on her heart and three tumors in her brain.
What Was That?!
One evening, as I was dressing Riley in her pajamas, she did this weird thing. As she was laying flat on our bed, she threw her arms out to her side, drew up her knees to her chest, tucked her chin and grunted as she stayed there for a few seconds. It happened again...and again. I took a video and sent it to my older sister asking her what she thought. She mentioned vertigo; which by definition means dizziness. It looked like she thought she was going to fall. We saw this strange behavior continued over the weeks. I remember being with my family in Connecticut over New Years, and watching her do this perplexing body movement while my mom was holding her. I remember my mom being concerned, saying she had never seen that before. Everyone I asked for an opinion told me not to worry; that she was still little and her nervous system was still developing.
Our Wasted Night in the ER
It finally came to a head at the end of January. She had just had her four month well child visit with her pediatrician. We mentioned it and even showed him a video. He showed no concern. The next day was Sunday, January 23rd. A day I will never forget. My poor Button cried the whole day and towards the end it was bloody screaming! Interspersed were these "convulsions" as I could only think to call them. Galen (my husband) and I were at our breaking point. We were snapping at each other and doing everything we could think of to calm her if only for a few minutes of reprieve. Finally I couldn't take it anymore and called her pediatrician even though we had just seen him the previous day. I spoke with the on-call nurse and she strongly suggested we go to an Emergency Room immediately. We didn't need any convincing and left for the ER. We waited maybe 45 minutes but for this poor mama ,who walked the corridor with her screaming infant, it seemed to be decade. Finally a nurse saw us...the check in nurse. Long, horrible, wasted evening short, our nurse told us she thought it was Colic and we should give her Colic Calm and close her in her room to cry. But the Dr's diagnosis was even more frustrating. After he watched the video we brought along, he thought it to be acid reflux and the screaming? Well that's simple. "You don't feed her enough", he stated. Since I was breastfeeding and not able to give him the exact ounces she consumed, he figured she was still hungry. So after trying my best to express my concern and my unwavering mama's intuition that SOMETHING was wrong with my baby, with no give or real concern on his part, we went home. We left the hospital 5 hours later the same way we came in; with a screaming baby girl.
Trust Your Mama Gut!!!
As we arrived home that night, I couldn't rest. I knew there was something wrong with Riley. I wanted to be wrong, but I couldn't shake this feeling in my gut. I sat at our computer and googled "infant spasms". I clicked on the YouTube link. As I watched the first video, I saw a little baby boy do the EXACT same thing Riley was. As i read the comments, I learned that it is called Infantile Spasms. I felt three things. #1 Relief to finally have a name for it and #2 Dread for the unknown ahead, feeling I had only uncovered the tip of the iceberg. And #3 Pride knowing that mama's do know best!
First Visit at Cleveland Clinic
The following day I made an appointment with one of the best pediatric neurologists in the world. We were able to see him the next day which still didn't feel soon enough, but at least help was around the corner.
Tuesday we met with Dr. Lacchwani and both my husband and I liked him immediately. He was soft spoken, attentive, gentle and very sweet to Riley. He asked us questions, gave his opinion, asked us ours and made us feel like we were not alone in this fear-filled journey anymore. What a relief!!! He watched our video, observed Riley and looked over her body with a Wood's Lamp which would show any lighter patches of skin which would indicate brain damage.She had one small patch on one leg and two on the other. At the end, he commended me saying "you were right on the money". He then told us Riley was definitely having Infantile Spasms but that lots more tests would need to be done to figure out why she was having them. She was immediately admitted into the Cleveland Clinic Hospital where we spent the next four days. They immediately put EEG leads on her head and monitored her through video surveillance 24 hours every day we were there. An MRI, EKG, Heart Echo, Kidney and Lung ultrasound were all done. After a misdiagnosis on Wednesday (from another Dr), we were given the hardest news of our lives on Thursday. We were informed she has TSC or Tuberous Sclerosis Complex. It is an incurable, genetic disease that causes tumors to grow on major organs like the brain, heart, lungs, kidneys, and skin. As I stated earlier they found three tumors on her brain. We were able to see the dark areas on her MRI scan indicating the tumors. Her Heart Echo revealed 3 tumors which they classify as Rhabdomyoma.. Which is a noncancerous tumor. Their normal MO is to shrink and disappear on their own. They said they were able to see signs that they have shrunk since birth. (Now it's pretty clear why our Punkin's heart rate kept dropping during labor! It couldn't take anymore strain!) So far all her other organs are clear. But that's what is so depressing about this disease. It likes to play peek-a-boo, so you're never really in the clear; there's no remission.
We went home in shock. I struggled with depression while trying to wrap my head around all the info that had just been dumped on us. Talk about information overload! They started Riley on two strong seizure meds and she was seizure free for 9 whole days.
Here and Now
It has been a little over two months since our first stay at Cleveland Clinic and we had one more in the beginning of March when they added a medication. But, unfortunately, our sweetie's body accepts the meds and makes the changes it's supposed to but only for a little while. Then her body becomes immune and we're back at square one. Which is where we are today. So that is why Riley will be having brain surgery in less than three weeks on April 21st. They will remove the biggest tumor where they have seen most of her seizure activity coming from. Then hopefully she will be seizure free. At least for awhile.
Wow! I guess that sums up most everything. Those are the facts anyways. If I had shared all my emotions through these trying months, well, lets just say you would be sitting reading this super long post a little longer and you might feel the need to sit in front of a shrink after! So there! If my faithful followers wanted a refresher or missed some of the history and if my new followers wanted to know what they were following, here you go! One of my friend's son also has TSC and I love this quote she shared the other day! This is how I feel, and the concept that has helped me get through this far!
It only seems fitting, since I'm starting something new with writing this blog about my daughter, her battle with TSC, and my heart as her mama, that I should start at the very beginning when this crazy, unplanned journey began. My beautiful daughter, Riley Elizabeth, was born September 24, 2010 at 10:24am after a long, complicated labor ending in a cesarean. My very first thought when I saw my baby girl was "Wow. She is BEAUTIFUL!" Not just because she was mine but because she actually was a very pretty baby and I was expecting the "wrinkled old man" look my dad had warned me about! My second thought and question was "Is she ok?" Meaning is she breathing? Does she have all ten fingers and toes? Is she fully developed? With my husband's reassuring "Yes! She's perfect!!" response I allowed myself to relax and just bask in the pure joy of having my precious angel delivered safe and sound. Little did I know, as I laid there being stitched up while they whisked my baby away with my husband following, that she was far from ok. There, being hidden under vernix-covered baby skin,were three tumors on her heart and three tumors in her brain.
What Was That?!
One evening, as I was dressing Riley in her pajamas, she did this weird thing. As she was laying flat on our bed, she threw her arms out to her side, drew up her knees to her chest, tucked her chin and grunted as she stayed there for a few seconds. It happened again...and again. I took a video and sent it to my older sister asking her what she thought. She mentioned vertigo; which by definition means dizziness. It looked like she thought she was going to fall. We saw this strange behavior continued over the weeks. I remember being with my family in Connecticut over New Years, and watching her do this perplexing body movement while my mom was holding her. I remember my mom being concerned, saying she had never seen that before. Everyone I asked for an opinion told me not to worry; that she was still little and her nervous system was still developing.
Our Wasted Night in the ER
It finally came to a head at the end of January. She had just had her four month well child visit with her pediatrician. We mentioned it and even showed him a video. He showed no concern. The next day was Sunday, January 23rd. A day I will never forget. My poor Button cried the whole day and towards the end it was bloody screaming! Interspersed were these "convulsions" as I could only think to call them. Galen (my husband) and I were at our breaking point. We were snapping at each other and doing everything we could think of to calm her if only for a few minutes of reprieve. Finally I couldn't take it anymore and called her pediatrician even though we had just seen him the previous day. I spoke with the on-call nurse and she strongly suggested we go to an Emergency Room immediately. We didn't need any convincing and left for the ER. We waited maybe 45 minutes but for this poor mama ,who walked the corridor with her screaming infant, it seemed to be decade. Finally a nurse saw us...the check in nurse. Long, horrible, wasted evening short, our nurse told us she thought it was Colic and we should give her Colic Calm and close her in her room to cry. But the Dr's diagnosis was even more frustrating. After he watched the video we brought along, he thought it to be acid reflux and the screaming? Well that's simple. "You don't feed her enough", he stated. Since I was breastfeeding and not able to give him the exact ounces she consumed, he figured she was still hungry. So after trying my best to express my concern and my unwavering mama's intuition that SOMETHING was wrong with my baby, with no give or real concern on his part, we went home. We left the hospital 5 hours later the same way we came in; with a screaming baby girl.
Trust Your Mama Gut!!!
As we arrived home that night, I couldn't rest. I knew there was something wrong with Riley. I wanted to be wrong, but I couldn't shake this feeling in my gut. I sat at our computer and googled "infant spasms". I clicked on the YouTube link. As I watched the first video, I saw a little baby boy do the EXACT same thing Riley was. As i read the comments, I learned that it is called Infantile Spasms. I felt three things. #1 Relief to finally have a name for it and #2 Dread for the unknown ahead, feeling I had only uncovered the tip of the iceberg. And #3 Pride knowing that mama's do know best!
First Visit at Cleveland Clinic
The following day I made an appointment with one of the best pediatric neurologists in the world. We were able to see him the next day which still didn't feel soon enough, but at least help was around the corner.
Tuesday we met with Dr. Lacchwani and both my husband and I liked him immediately. He was soft spoken, attentive, gentle and very sweet to Riley. He asked us questions, gave his opinion, asked us ours and made us feel like we were not alone in this fear-filled journey anymore. What a relief!!! He watched our video, observed Riley and looked over her body with a Wood's Lamp which would show any lighter patches of skin which would indicate brain damage.She had one small patch on one leg and two on the other. At the end, he commended me saying "you were right on the money". He then told us Riley was definitely having Infantile Spasms but that lots more tests would need to be done to figure out why she was having them. She was immediately admitted into the Cleveland Clinic Hospital where we spent the next four days. They immediately put EEG leads on her head and monitored her through video surveillance 24 hours every day we were there. An MRI, EKG, Heart Echo, Kidney and Lung ultrasound were all done. After a misdiagnosis on Wednesday (from another Dr), we were given the hardest news of our lives on Thursday. We were informed she has TSC or Tuberous Sclerosis Complex. It is an incurable, genetic disease that causes tumors to grow on major organs like the brain, heart, lungs, kidneys, and skin. As I stated earlier they found three tumors on her brain. We were able to see the dark areas on her MRI scan indicating the tumors. Her Heart Echo revealed 3 tumors which they classify as Rhabdomyoma.. Which is a noncancerous tumor. Their normal MO is to shrink and disappear on their own. They said they were able to see signs that they have shrunk since birth. (Now it's pretty clear why our Punkin's heart rate kept dropping during labor! It couldn't take anymore strain!) So far all her other organs are clear. But that's what is so depressing about this disease. It likes to play peek-a-boo, so you're never really in the clear; there's no remission.
We went home in shock. I struggled with depression while trying to wrap my head around all the info that had just been dumped on us. Talk about information overload! They started Riley on two strong seizure meds and she was seizure free for 9 whole days.
Here and Now
It has been a little over two months since our first stay at Cleveland Clinic and we had one more in the beginning of March when they added a medication. But, unfortunately, our sweetie's body accepts the meds and makes the changes it's supposed to but only for a little while. Then her body becomes immune and we're back at square one. Which is where we are today. So that is why Riley will be having brain surgery in less than three weeks on April 21st. They will remove the biggest tumor where they have seen most of her seizure activity coming from. Then hopefully she will be seizure free. At least for awhile.
Wow! I guess that sums up most everything. Those are the facts anyways. If I had shared all my emotions through these trying months, well, lets just say you would be sitting reading this super long post a little longer and you might feel the need to sit in front of a shrink after! So there! If my faithful followers wanted a refresher or missed some of the history and if my new followers wanted to know what they were following, here you go! One of my friend's son also has TSC and I love this quote she shared the other day! This is how I feel, and the concept that has helped me get through this far!
If and when a horror turns up, you will be given grace to help you. I don't think one is usually given it in advance. "Give us our daily bread" (not an annuity for life) applies to spiritual gifts too; the daily support for the daily trial. Life has to be taken day by day, hour by hour.
-CS Lewis
Short, Sweet and off to Sleep
It is 1:30am. It only seemed fitting after a loooong day of getting this blog up and running that I should follow with my first post. It will be short and sweet because this mama is EXHAUSTED! My darling daughter had a rough day. Thus subsequently, I did too! Tuesday we were given instructions on changing her three seizure medication doses. Unfortunately, the one that makes her irritable was increased. So she was a fuss muffin all day. (It's amazing the funny pet names we parents come up with!) I tried e v e r y t h i n g! I'm trying not to get frusterated with her because I know it's not her fault. Regardless, it's still hard not to pull the hair out of your head when all you here all day is that cranky cry. The words "This too shall pass" helped me put the day in perspective. Alright, I will impress you with my lengthy writing skills some other night. Must get some shut-eye!
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