The Walk-and-Roll for Spina Bifida is almost here! Please join us!!
To join or donate, please go to: http://www.sbaazwalknroll.org/faf/r.asp?t=4&i=1027278&u=1027278-332052133&e=5950846222
GO TEAM MADI!!
Sunday, September 30, 2012
Sunday, September 23, 2012
TUESDAY TUESDAY TUESDAY!
Can you tell I'm excited about TUESDAY? Tuesday, the 25th, is our next court date!! Please pray that the judge is at court on our date and that everything gets processed quickly. Better yet, pray everything gets done and we don't need a third date ;). We can't wait to be one step closer!!
Tuesday, September 18, 2012
You Know Someone In Your Family Has Spina Bifida When...
-You find a catheter in the dryer (that apparently went through the washing machine)
- You hear things like, "Titan (our dog) is sick! He needs surgery! Let's do surgery on him!" Or better yet, when your kiddo tears a sticker, you have to do surgery, STAT!
- You check your purse and you only have $1, but you have 3 catheters.
- You are a ninja and can cath a child in their sleep without them waking, and this becomes a bragging point.
- You get so excited about latex-free bandaids in cute designs that are cheap at walmart that you buy 4 boxes and put them in your children's Easter egg baskets.
- You get VERY excited about an offer in your child's monthly cath order for a free cathing mirror. So excited, in fact, that you have to run and tell all your friends who also have spina bifida or someone in their family living with spina bifida.
- You find yourself running accross the room, while everything moves in slow motion, yelling "NO! Don't put that catheder in your mouth! We just used that one!" Luckily you make it just in time ;).
- You find yourself explaining that a catheder, even a clean one, is not a straw and not to drink out of.
-You wander in to your half-lit bathroom to brush your teeth before bed and don't realize someone stuck the lube container in with the toothpaste containers.... until you have already started brushing with it!
Add your own to the comments below!
- You hear things like, "Titan (our dog) is sick! He needs surgery! Let's do surgery on him!" Or better yet, when your kiddo tears a sticker, you have to do surgery, STAT!
- You check your purse and you only have $1, but you have 3 catheters.
- You are a ninja and can cath a child in their sleep without them waking, and this becomes a bragging point.
- You get so excited about latex-free bandaids in cute designs that are cheap at walmart that you buy 4 boxes and put them in your children's Easter egg baskets.
- You get VERY excited about an offer in your child's monthly cath order for a free cathing mirror. So excited, in fact, that you have to run and tell all your friends who also have spina bifida or someone in their family living with spina bifida.
- You find yourself running accross the room, while everything moves in slow motion, yelling "NO! Don't put that catheder in your mouth! We just used that one!" Luckily you make it just in time ;).
- You find yourself explaining that a catheder, even a clean one, is not a straw and not to drink out of.
-You wander in to your half-lit bathroom to brush your teeth before bed and don't realize someone stuck the lube container in with the toothpaste containers.... until you have already started brushing with it!
Add your own to the comments below!
Sunday, September 16, 2012
And we have seizure 3
Friday did not turn out quite how I had imagined. Madi was randomly awake from about 12:30 until about 1:30 am, then awoke at 7:10ish dry-heaving/seizing. This seizure was different from the other two and it took me a while to realize what was going on. After dry-heaving, Madi fell asleep. She awoke, though, and was responding, but was slow to respond. Then her eyes started blinking a lot and I knew for sure (well, at least I think I do ;)) that it was a seizure. I gave her the rescue medicine I have for her, since her seizures are long and complex, and she quickly fell asleep. When she awoke, she was back to her normal self.
I've already talked with the nurse at the neurologist office, the pediatrician, and our naturopathic doctor, and missed a call from the neurologist (darn that terrible phone reception!! Time to get a new cell phone carrier!!). I am also waiting for a call back from the neurosurgeon. Thankfully, though, this seizure did not bring any paralysis and did not land us in the hospital, nor did it necessitate a 911 call. I am just really bummed that it came at just 2 1/2 weeks after her last one, and while she is on her daily seizure medication.
Seizures aren't fun, that's for sure. I find myself stressing about when the next one will be and being afraid to let her out of my sight for any length of time. If she is slow to respond, because she's tired and spaced out, or she's dreaming and twitching in her dream, I fear the worst. What also makes it hard is that each of her 3 seizures have been quite different. David and I finally got out for a date night to the movies, but we couldn't get cell phone reception and couldn't relax without it, so we had to walk out and get a refund. We ended up going out to dinner and it was still nice to be out together, but it's hard to be worrying so much.
For the last few days I've had the Beatles song that says "Life Goes On" running through my head. Though this onset of seizures is hard on mommas heart, I know that God is in control and has a plan. We choose not to sit at home, but to be out and active, to continue our daily activities, and to try and live our life to the fullest. We will learn to adapt and handle our new changes in life and not let them keep us from enjoying our time together. Life goes on, and for that I am so grateful.
I am praying we can get her seizures under control so that she can go back to being seizure-free. Please be praying with us. Please also pray for wisdom for us and for the doctors as we learn how to best how to control Madi's seizures.
I've already talked with the nurse at the neurologist office, the pediatrician, and our naturopathic doctor, and missed a call from the neurologist (darn that terrible phone reception!! Time to get a new cell phone carrier!!). I am also waiting for a call back from the neurosurgeon. Thankfully, though, this seizure did not bring any paralysis and did not land us in the hospital, nor did it necessitate a 911 call. I am just really bummed that it came at just 2 1/2 weeks after her last one, and while she is on her daily seizure medication.
Seizures aren't fun, that's for sure. I find myself stressing about when the next one will be and being afraid to let her out of my sight for any length of time. If she is slow to respond, because she's tired and spaced out, or she's dreaming and twitching in her dream, I fear the worst. What also makes it hard is that each of her 3 seizures have been quite different. David and I finally got out for a date night to the movies, but we couldn't get cell phone reception and couldn't relax without it, so we had to walk out and get a refund. We ended up going out to dinner and it was still nice to be out together, but it's hard to be worrying so much.
For the last few days I've had the Beatles song that says "Life Goes On" running through my head. Though this onset of seizures is hard on mommas heart, I know that God is in control and has a plan. We choose not to sit at home, but to be out and active, to continue our daily activities, and to try and live our life to the fullest. We will learn to adapt and handle our new changes in life and not let them keep us from enjoying our time together. Life goes on, and for that I am so grateful.
I am praying we can get her seizures under control so that she can go back to being seizure-free. Please be praying with us. Please also pray for wisdom for us and for the doctors as we learn how to best how to control Madi's seizures.
Thursday, September 13, 2012
So Many Updates!
Last week Madi had her first week of preschool and Conner had his first "official" homeschool week. Both the kids had a blast and are loving learning! Conner is enjoying some of the "perks" of homeschooling, like wearing pj's to school and finding critters to "study". We had a slower introductory week and he really loved the activities, as well as some one-on-one time with momma. Here he is with a little frog we found in our pool....
Today Madi and I taught her class about spina bifida (in 3-year-old language ;)). We read "Right Under My Nose" and when we got to the part about scars, Madi insisted on showing everyone hers, which lead to lots of excitement while the kids attempted to find scars (cuts and bruises mostly ;)) on themselves. It was chaos, and oh so fun. We talked about how Madi's wheelchair is kinda like shoes. It looks cool and helps her go fast, just like our shoes do, but it's not a toy to play with, just like our shoes aren't. I think they mostly got it ;). I also let them take rides in the wheelchair we have waiting here for Ramya (that's a whole different story I need to post one day!!). Madi was so pumped about talking with the class and got really in to it. I loved how excited she was! Here is a picture of her today (yup, sorting skittles but holding fake cheese... that's my girl!)
We also have some news about our second court date:
Conner on his first day of school...
Today Madi and I taught her class about spina bifida (in 3-year-old language ;)). We read "Right Under My Nose" and when we got to the part about scars, Madi insisted on showing everyone hers, which lead to lots of excitement while the kids attempted to find scars (cuts and bruises mostly ;)) on themselves. It was chaos, and oh so fun. We talked about how Madi's wheelchair is kinda like shoes. It looks cool and helps her go fast, just like our shoes do, but it's not a toy to play with, just like our shoes aren't. I think they mostly got it ;). I also let them take rides in the wheelchair we have waiting here for Ramya (that's a whole different story I need to post one day!!). Madi was so pumped about talking with the class and got really in to it. I loved how excited she was! Here is a picture of her today (yup, sorting skittles but holding fake cheese... that's my girl!)
Here's Madi in a huge mound of dirt she (proudly) climbed:
We also have some news about our second court date:
I just heard back from Vathsalya who informed us that your 2nd court hearing is posted for September 25th. Fingers crossed, this will go through quickly. I will let you know as soon as I hear back from them on your case.
Please pray that the judge is present, everything that needs to get done does, and that we will get our third court date quickly after or, better yet, that they will get it all done in just the two dates.
In other news, I'm in my third trimester. No, I am not pregnant (gotcha!), but if adoption has trimesters, I'm in my third. I'm anxious and excited and nervous and just a huge ball of emotion. I am also nesting, big time. I have this huge urge to get everything done around the house that I need to (which is a crazy big amount so if anyone is bored and wants to come play with my kiddos for a few hours so I can work, I will be forever in your debt!!). If you come visit my house, I will likely try to send you home with something. I want this baby de-cluttered!!
That's all that's going on in our neck of the woods. I hope to have more updates for you soon!
Wednesday, August 29, 2012
Madi's 2nd Seizure and 3rd Ambulance Ride
Little Miss made sure that we had a VERY exciting day today. She woke up early throwing up and then went back to bed for a few minutes. I handed her to David to change my shirt and put in my contacts then heard him screaming for me. I ran in and he said he thought she was having a seizure (she was). I held her for a few minutes and then she started responding. She told me she barfed about 20 times and I cleaned her up with a wet napkin, but I noticed she couldn't move her right arm at all and it was just floppy. Then she went unresponsive again. We gave her the seizure meds we were given to stop her seizures but she didn't seem to be responding to them, so we called 911. She fell asleep shortly after we called them. They came and checked her out and said she looked good but they recommended we take her in (and we agreed as her right arm was still floppy and her left eye was twitching weird) so they loaded her and I onto a gurney and into the ambulance. Once we got in the ambulance, she regained function of her left arm.
The first thing we checked in the ER was her urine and her shunt, both of which came back fine. They said that she would probably have a "big" MRI and another EEG, but sent the neurologist in to talk with us. He reviewed her past EEG and said that her abnormal firings are coming from the area of the brain where her shunt enters her grey brain matter. He said her shunt is working fine, but that any time something abnormal happens to the brain matter or enters the brain matter, it puts you at risk for seizures. Her body sees her shunt as a foreign object, obviously, so it reacts to it. He said that there is about a 3% chance of a child seizing from their shunt when it's not actually malfunctioning, and Madi, he believes, is part of that 3%. So, basically, moving the shunt probably won't help, as we would just be entering a new area of brain matter. If, at some point, we decided to do a third ventricularoscomy (don't ask me if I spelled that right!!), that would probably take away the seizures, IF it was successful. He said that the area where the shunt was would still leave a "scar" of sorts, so it may not help, but it would most likely help.
When I was describing what happened to the neurologist, he said he believes her seizure actually started when she started vomiting. That would mean she had another abnormally long seizure. He wants her on anti-seizure meds from here on out for at least a few years. I'm a more naturally-minded momma, so the thought of more meds makes me want to cry, but so does the idea of more seizures. He said that he's not concerned about the frequency of them, but more at the length of time they occur for. He told me that if she continues to have long seizures then it will change that area of her brain over time. He said the problem comes when a child has had them long-term and becomes a teenager. They start to have difficulty controlling them and can't always stop them any more. I asked about how often the medication helps control them, and he said it works in about 65 to 85 percent of children. The neurologist said that he didn't feel another EEG or MRI were necessary and sent us home. Madi said he ("the man with the spiky hair" as she called him) was her best friend, because he got her water :). We have to go back and see him in a few weeks.
They also checked Madi out to see if she had a stroke, but they are sure she didn't, as she didn't have any facial drooping and she regained function so quickly. They said temporary paralysis is a side-effect of seizures sometimes. Though it's not super common, they see it fairly often.
The other fun was that my phone was mostly dead today when I left in the ambulance and it totally died after I called Madi's OT and told her not to come for therapy that day. I had grabbed my phone charger, but my phone wasn't working from the hospital, so I couldn't call in or out. I could have used the hospital phone, but Madi was hooked up to wires and didn't want out of my arms (and was asleep a lot of the time), and I couldn't reach the phone from the bed. I texted David and asked him to call my parents, but the text didn't go through. He didn't think to call my parents, so they didn't even know we were in the hospital!
So that was our fun for the day! Please keep little miss in your prayers. She is back to her normal, spunky little self, thank God! I am also very thankful right now for video baby monitors, and for the fact that she pretty much just still sleeps in my bed. There are few things greater than peace of mind!
The first thing we checked in the ER was her urine and her shunt, both of which came back fine. They said that she would probably have a "big" MRI and another EEG, but sent the neurologist in to talk with us. He reviewed her past EEG and said that her abnormal firings are coming from the area of the brain where her shunt enters her grey brain matter. He said her shunt is working fine, but that any time something abnormal happens to the brain matter or enters the brain matter, it puts you at risk for seizures. Her body sees her shunt as a foreign object, obviously, so it reacts to it. He said that there is about a 3% chance of a child seizing from their shunt when it's not actually malfunctioning, and Madi, he believes, is part of that 3%. So, basically, moving the shunt probably won't help, as we would just be entering a new area of brain matter. If, at some point, we decided to do a third ventricularoscomy (don't ask me if I spelled that right!!), that would probably take away the seizures, IF it was successful. He said that the area where the shunt was would still leave a "scar" of sorts, so it may not help, but it would most likely help.
When I was describing what happened to the neurologist, he said he believes her seizure actually started when she started vomiting. That would mean she had another abnormally long seizure. He wants her on anti-seizure meds from here on out for at least a few years. I'm a more naturally-minded momma, so the thought of more meds makes me want to cry, but so does the idea of more seizures. He said that he's not concerned about the frequency of them, but more at the length of time they occur for. He told me that if she continues to have long seizures then it will change that area of her brain over time. He said the problem comes when a child has had them long-term and becomes a teenager. They start to have difficulty controlling them and can't always stop them any more. I asked about how often the medication helps control them, and he said it works in about 65 to 85 percent of children. The neurologist said that he didn't feel another EEG or MRI were necessary and sent us home. Madi said he ("the man with the spiky hair" as she called him) was her best friend, because he got her water :). We have to go back and see him in a few weeks.
They also checked Madi out to see if she had a stroke, but they are sure she didn't, as she didn't have any facial drooping and she regained function so quickly. They said temporary paralysis is a side-effect of seizures sometimes. Though it's not super common, they see it fairly often.
The other fun was that my phone was mostly dead today when I left in the ambulance and it totally died after I called Madi's OT and told her not to come for therapy that day. I had grabbed my phone charger, but my phone wasn't working from the hospital, so I couldn't call in or out. I could have used the hospital phone, but Madi was hooked up to wires and didn't want out of my arms (and was asleep a lot of the time), and I couldn't reach the phone from the bed. I texted David and asked him to call my parents, but the text didn't go through. He didn't think to call my parents, so they didn't even know we were in the hospital!
So that was our fun for the day! Please keep little miss in your prayers. She is back to her normal, spunky little self, thank God! I am also very thankful right now for video baby monitors, and for the fact that she pretty much just still sleeps in my bed. There are few things greater than peace of mind!
Tuesday, August 28, 2012
Our Little Vacation
We weren't able to get away this year for long (we are saving our money and David's time off for India :)), but we were able to sneak in a little vacation to California to take the kiddos to Seaworld. It was their first time there, and they loved it! We stayed in Carlsbad at my parent's timeshare on Thursday night and Friday night and enjoyed the beach. On Saturday we headed over to San Diego and on Sunday we went to Seaworld. We came home Monday, but stopped at Seaport Village on our way out. It was a really fun weekend (and a good distraction to my wondering how our first India court date went ;)). Here are some photos:
Exploring a cave with momma (he got his cast off on Thursday before we left but needed more time to heal so they splinted him again. At least now we can swim and bathe again!!)
Look mom, I found a snail!
Hanging out with Papa at the beach:
Sea Lions!
Never too big for the Toddlerhawk and cuddle time with momma! Moments like these don't happen often any more, so I treasure them!
Conner's first boogie bording trip!
The beach was COLD!
Madi made a sand turtle!
Madi was playing her new dollar store guitar and was singing for papa... too cute!!
Seaworld!
Touching the starfish (conner wouldn't hold them)
Papa, Grammy, Kyla, Grandad, and Grams all came!
Madi loved touching and holding the starfish
Madi's new "baby", which she named "Woo Woo Wa Wa Woo Woo Wa Wa", and had to strap in to her wheelchair with her, of course!!
SHARKS!
Touching stingrays
Best of friends!
Our new boyfriend
Watching dolphins with Grams
Dinner with Deana, my birth mom, Lindsay, my half sister, and Nathan, my half brother
P.S. As if I wasn't already, I am officially a PRO at cathing on the go! We were almost never in our room!
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