Wednesday, December 30, 2009


My handsome little Monkey boy is having some severe sleep problems. He cannot fall asleep at night, and if he does he's awake an hour later. The pediatrician had me try Melatonin, Benadryl, and finally last night Xanax. He is such an anxious kid in general, and I think it's the root of his sleeping issues. So he prescribes a small dose of Xanax, to be given 45 minutes before bedtime.

He fell asleep, he was even snoring. YAY! For the first time in literally weeks, both kids were asleep. It was nice to have some alone time with the hubby. And then, the boy was crying. Not even crying, moaning and wailing. He wasn't really awake, so I couldn't get him to talk to me. I had to stand him up, wash his face with cold water, and wiggle him awake. Then he cried uncontrollably.

For the next two hours, the Xanax wrecked havoc on his little brain. He was dizzy, his eyes were fuzzy. He was paranoid - everywhere that there was dark or a shadow, someone was watching him. He was confused, he said he felt like he was supposed to be somewhere else?? He was hyperventilating and freaking out. He said something bad was going to happen.

I finally googled how to counteract Xanax and everything said caffeine. So I popped a cherry coke and had him down it. Within 30 minutes he was calm and really awake, and then he was so tired he actually slept the rest of the night. In my bed, but sleep!

Wow. So I need to call the pediatrician back and tell him that this is clearly not the solution! His next option was Ambien. Anyone have experience with that, as an adult or with your child?

Monday, December 28, 2009

Supply Overload!

I was checking on my favorite blogs last week when I saw that Jaxson's mom Lacey was in need of Farrell Bags. Well guess what, I had some! :) So off they went by Priority Mail, hopefully to arrive today or tomorrow. She said she couldn't believe I had them and found them. Here's the secret to my madness!!

These pictures are in Peanut's room. The rubbermaids are full of extra syringes (3, 5, 10, 30, and 60 ml), gauze 2x2 iv splits, lubricant, extra g-tube extensions, paper tape, etc. All those green boxes are urinary catheters. We used to have to reuse them because we couldn't get enough, so I'm not about to complain that they send way too many now! :) Those are all in her closet. On the shelves in the closet are her nebulizer and suction machine, both of which we are lucky enough not to need lately. There are g-tube stoma sizing devices, extra gloves for the nurses, and ambu-bags. On the bottom left, which I guess I didn't take a picture, is another three drawer container. It has all the extra tubings for her nebulizer and suction machine. Then there is also the six drawers on top of each other. That is not in the closet, that is next to her bed. It contains diapers, Pull-Ups, catheters, latex-free gloves, lubricant, disposable chux, sheets for her bed and crib, and washable reusable chux. Lots of stuff!

The next pictures are in the kitchen and dining room. We have an entire cabinet full of Neocate and Polycose. Again, times of running out each month remind me to never complain that I get too many now! :) Under those cans are her jarred baby foods. I use these to mix her daily blenderized diet when I'm too lazy/busy to make it from scratch. Next are the empty baby food jars that her daily foods are put into in the fridge and to school. I reuse these over and over. To the left of those jars are her daily medications, except for those that are in the fridge. And next to that is a small three drawer container. Top drawer is med syringes (3, 5, 10 ml). Middle drawer is 60 ml syringes for bolusing blenderized food, and both types of extensions. Bottom drawer is medicine cups, spoons, bottle lids, etc. The bottles are for taking pedialyte or water with us, and for measuring her pedialyte into her food. The colorful cups are what I use to carry her med syringes when it's time to give them. The last picture is a larger three drawer container in my dining room. The top drawer is feed bags for her Zevex Infinity. The middle drawer is more syringes, 3-5-10 ml. The bottom drawer is miscellaneous. 60 ml syringes, extra extensions, gauze, tape, replacement g-tube, etc.

I've found that the key to staying organized is these rubbermaid containers. My peanut has a TON of stuff, as do most kids like her. It's easdy to find them in clear containers, when everything has a home. Now if only I could get the rest of my house this organized! :)

Saturday, December 26, 2009

The best Christmas present EVER!

Santa brought this Step and Count Kangaroo by Vtech. When mommy went to the store it was sold out! It wasn't until literally Christmas Eve that Santa was able to get one at the local Toys-R-Us. :) My Peanut has been working with this at therapy and we just had to have one at home. It is a GREAT toy for kiddos trying to learn to stand up.

And on Christmas morning, after she stood with support from me, I let go. And for over a minute, she stood. Holding on to the ear handles. With no support from anyone!! Could it be a Christmas miracle? Who knows .... but I do have the highest of hopes for her this coming year!

Ignore the crummy picture, evidently Daddy doesn't know how to center the subject of the photo. And seriously, ignore the fat mommy. :)

Friday, December 25, 2009

Merry Christmas!

We are so blessed by these two kids. They are both truly amazing. They make me so proud! These pictures a mish-mash of Christmas Day. :) My parents came over with presents for everyone including the dogs, and the dogs went crazy!

Wednesday, December 23, 2009

Stupid seizures.

So I realized this morning that my Peanut hadn't had a seizure in a while. And I stupidly posted it on Facebook. Which of course means that she had a big seizure this evening. :( She had been grumpy all day, and had been whining and crying and flailing around for almost two hours. Her nurse couldn't calm her, I couldn't calm her. She was just distraught, but I couldn't figure out what was wrong. I ended up just sitting on the couch and holding her on my lap while she cried and fought me. Then she had a seizure. It was less than 30 seconds but it was INTENSE. Then she was sedate and sluggish, and we got her off to bed. I am guessing that the fussing before hand was the onset of the seizure. I hope that she wasn't seizing during that time. If she was, we sure couldn't tell.

I hate seizures. I even sent an email to the neuro this morning telling him how long it's been since she's had a seizure. Stoopid seizures!

Monday, December 21, 2009

So much cuteness in one little body!

These were some jammies that my Peanut got for her birthday and hasn't worn yet. They just got put away and somehow she's never worn them. They are the softest, most snuggliest jammies ever! All I wanna do is sit on the couch with her and cuddle. She would love to do that all day long in front of the TV. Of course, it doesn't help the laundry get done or the bathrooms get cleaned. ;)

And one of our Christmas tree. My Monkey boy is 9 this year and he has decided that this is the last year this tree is acceptable. It is simply too girly for him. So I have promised him a real tree next year. This one will so go up I'm sure, I just love it! :)

Speaking of Monkey, here's a picture of him getting two awards at school on Friday! He is such a great student, he makes me so proud! And for the record it was pajama day at school. He doesn't normally go quite that casual! LOL

Tuesday, December 15, 2009

Blenderized diet update

So Connie asked me when I went back to using a blenderized diet for Peanut, and I realized that I never posted about it. :) When she had a bad virus this summer and ended up in the hospital, we switched her back to full Neocate Infant with Polycose. Unfortunately, with that diet came intractable diarrea! It was a mess. So even though the nutrionalist wanted her on the formula only diet for a while, the GI over-rode that decision and said to start back her blenderized diet. Quite a convert - he was completely opposed to it in the beginning. :)

So she is back on blenderized food. She does still get some Neocate with Polycose overnight for 12 hours, but during the day she gets three boluses of food. Her diet has to be strictly measured and weighed though. She has hypoglycemia issues and a metabolic disorder, so we have to be serious about it. She gets 5 ounces of fruit, 2.5 ounces of veggie, 1.5 ounces of meat, 100 cc's of Pedialyte, 1/8 tsp of salt, 1 tsp polycose, and 3 tbsp of rice cereal. It can only be Beechnut rice cereal, because she is soy and dairy intolerant and that is the only brand that is soy/dairy free. Some days this mixture is made from jarred baby food, some days it is made from fresh food. It depends on my busyness. :)

So there you have it! I switch up her veggies and fruit every day. Normally we use green beans, peas, carrots, squash, bananas, apples, pears, and peaches. I use jarred baby meat most of the time, because it's easiest. She does GREAT on a blenderized diet. Her nails and hair have never grown so fast, and so healthy. She is much happier, her BM's are more controllable, and life is good. YAY!

Saturday, December 12, 2009

G-tube Change

Obviously not everyone who reads my blog has a disabled child, so I thought I would share something with you all. :) I had to change Peanut's g-tube today. It has a little valve on the inside called an anti-reflux valve. It is supposed to prevent anything from coming out of the tube when you unhook it from the feeding extension. It doesn't last very long, and pretty soon the g-tube leaks every time you open it. My understanding is that Peanut's lasts even less long than normal due to the amount of retching she does. I don't know if that's true or not, but we never make it even 3 months before it's leaking like crazy.

Here's the new button. I fill it with water before inserting it to make sure it doesn't have a leak. Then I take the water out, put it in her stomach, and refill the water balloon.

Here's her stoma after I took out the old g-tube. It doesn't look bad! Some kids have horrible granulation issues around it, but Peanut's has always looked great. KNOCK ON WOOD! :) In the photos there is a darkish ring around the stoma (hole), which I don't see when I look at her in person. I guess it's just toughed skin a bit from having the g-tube twirling on it all the time.

Here's a side-by-side of her new and old g-tube. Ick, huh! The old one looks so nasty when it is taken out. Peanut's looks worse than some kids, because she gets a blenderized diet. She gets a lot of orange and green veggies, so they tend to discolor it more quickly than normal.

The first time I ever changed a g-tube at home on my own, my husband passed out. Needless to say, he doesn't do "ick" well. :) Now we are pros! No fainting, no icked outness, just pull it out and pop a new one in. This little piece of rubber is the only way my Peanut gets nourishment. Isn't it amazing!

Tuesday, December 8, 2009

Change of plans

So, we're not going to get me a new van. A loan for that would be about $600 a month, which is twice as much as I want to spend. We would be really tight at $300. Twice that and we would be eating nothing but potatos. LOL

We're going to repair my husband's car after all. $1700 to get the transmission rebuilt, and we can do the other repairs next month or the month after. It sure stinks to have to put out this much money during Christmas!

This morning I took hubby to work, and dropped him off. A coworker has a spare car he is going to borrow until we get his repaired. Isn't that nice of his coworker! :) I dropped him off at work and headed home, only to notice that my check engine light was on. Seriously??! I about had a mental flip-out.

I drove straight to the mechanic, who plugged into their computer thingy. And yes, that is the technical term. The computer thingy indicated that the problem was my husband. LOL When he pumped gas for me last night, he didn't click the gas cap on tight. It triggers your check engine light! Who knew. ;) That is the SECOND time he has done that to me. Last time my check engine light came on, it was the same thing ... also the morning after my husband pumped gas for me. Silly boy!

The car thing is not ideal, but at least we have a rational, affordable solution. I will just keep dreaming about a wheelchair accessible van I suppose!

I take the dog back tomorrow afternoon to get her drains removed. Ick. I sure hope they stitch this shut finally. It's gross.

In some good news, I finally found a new pediatrician for the kids. I really love our pediatrician, but he is 30-45 minutes away. His urgent care is the same building. This is not ideal when something happens after hours. I don't have time to be driving all over! So I talked to everyone I know and got repeat recommendations for one doctor TWO BLOCKS FROM HOME! :) And one of those recommendations came from another special needs mom. Yay! So I have to go to the insurance place tomorrow and fill out a form, and change. I am sad to leave our pediatrician, it's the only one Peanut has had. I will definately have to write him a long sweet letter. I feel like a jerk for leaving him!

Monday, December 7, 2009

Seriously ...

I took the dog to the vet this morning, and had a friend take me to pick her up this afternoon. Remember, my husband has to take my van to work because his car is dead. So we pick up the dog and she has the infamous white cone of stupidity on so she can't get her paws at the drain in the top of her head.

Oh, did I mention that when a dog gets drains, they don't get the little grenade ends like humans do? So when stuff drains out of the drain, it just drains? How gross is that?? He said they don't use dangling drains because there's no way to keep them safely attached. Hell freaking ICK!! So the dog will live in her kennel still, with no house roaming allowed. I have to take her back on Wednesday for the drains to be removed, and I just pray that they are stitching the stupid wound shut at that point so this can all be over!

In other oh-my-hell news .... I am the PTO President. Nothing new. That means that I am in charge of most events. Such as our holiday store for the students. You know the one, where your kid takes five or ten dollars and buys a bunch of junky crap that gets wrapped up and given to you with love. ;) So I booked with a lady named Darlene at Fun Novelty. Emails went back and forth, contracts were signed. Product was delivered Thursday, our store will be set up this week and run all next week. Except that then I get a call from Darlene at Fun Services saying I signed up and it will be delivered tomorrow. I explained that it was already delivered and there must be a mistake. She points out what a moron I am and that Darlene at Fun Novelty and Darlene at Fun Services are two different people at two different companies. And that I owe her $200 to cancel, which was in the contract I signed. CRAP! Did I really do this? What are the chances that there are Darlenes at Fun Services and Fun Novelty? The only way it could have been MORE confusing was if one was Fun Services Co. and one was Fun Services Inc. I royally screwed up. Trying to email my way out of this $200 fee. It was an honest mistake. :(

In our car news, we are trying to get financed for a new minivan for me, with a wheelchair ramp and lockdown for Peanut inside. Hopefully we can get approved, hubby will drive my van, and we'll live on spagetti and mac & cheese while we make car payments. And I am only sorta joking!

Saturday, December 5, 2009

A series of unfortunate events

So you read about our dog Hannah's nasty head wound and abcess. I have tried nightly to clean it but honestly it just looks worse. This morning it started bleeding and wouldn't stop. I threw her kennel in the car and we went off to the vet. He cleaned it a bit in the office and got the bleeding stopped. He said it's definately still infected inside. Monday morning at 7am I drop Hannah off to get the wound opened a bit more and cleaned out from the inside. He thinks there will be a drain in the opening for a while afterward. I guess since my daughter doesn't have any weird medical things going on right now, someone had to! And this will be a minimum of $150. Ugh!

Yesterday my dear husband's car died on the way to work. His transmission is shot, it needs to be rebuilt. To the tune of $1700. Oh and his fuel line, bearings, and tie rods all need to be replaced, which we've known for a little while. All together, about $3000. Ugh!

My minivan's rear brakes are squeeling. The van has a wheelchair lift on the outside rear, like one of those old people's scooter racks. It doesn't have a ramp or interior lock. Luckily a friend is taking pity on my and her husband and brother are going to replace my brakes tomorrow for me. Phew!

We have to decide what to do about our vehicles. We were approved for a $20,000 loan only. So we either get my husband a new car, or get me one and he drives my van. I would really REALLY like a van with a ramp and wheelchair lockdown inside. My back is such a wreck and my right hand is useless due to previous surgeries and a number of cycsts and growths on it. I'm researching to see if there's ANY chance of finding an adapted vehicle for under $20k. It's not looking to good! I don't want to buy an old old old one, because then we'll just end up replacing it again. It needs to last a while.

Oh, and you know it's the holidays right? And that we do Hannukah and Christmas, because we have family of both religions? I am about 3/4 done shopping but now ... too many other expenses. Ugh! I hate that this is the first year the kids are not going to get all the things I want them to have. Not that we ever go really overboard, but it's nice for them to feel spoiled. Did I mention, UGH!

In unrelated issues, my back problems are a million times worse lately. If I sit in a chair for more than five minutes, it is exrutiating to stand up. I can't get comfortable in bed anymore, no matter how I lay my back hurts. And if I sleep in the recliner, the nerves that are pinched in my upper leg hurt. So I am in a world of misery.

So .... ugh overall! I wish we all lived in a little neighborhood where we could help each other and watch each other's kids and drink coffee together!

Friday, December 4, 2009

Medical crisis - but not Peanut!

We have a little Boston Terrier that loves to attack our other two dogs, who are double her size. Last December I had to take her to the emergency vet at 11pm because she had her eye bitten. It was out of socket and there was a big gash above it.

Wednesday night, her head was bleeding. There was a big cut on it, but it stopped bleeding when I put pressure on it. I cleaned it up, and decided it was okay to heal on it's own. Yesterday (Thursday) I brought Peanut home from therapy and Hannah (the little trouble maker) ran up to me. Where the cut on her head is, was covered in ooze. Holy grossness! I tried cleaning it up but every time I touched her head, more pus came out.

I took her to the emergency vet and he said that she didn't get bit on Wednesday, she got bit previously. It made an abcess, and Wednesday it opened. That was the blood we saw. He wanted to do emergency surgery (just to be safe) for $800-1200. Uhm, no. So he instructed me how to open it and clean it every day for five days, gave her antibiotics and anti-inflammatories, and called it a day.

It took me and my husband, a muzzle, and a lot of swearing. I got it cleaned out last night. I am covered in scratches. I look like I was in a cat fight!!

Stupid dog. Honestly, if it's not one thing in this house it's another!

Thursday, November 26, 2009


There is so much in our lives to be thankful for! The obvious ones are my two beautiful children.

My Monkey boy is 9 years old and SO wise beyond his age. Yesterday morning after my husband went to work, I went back to sleep. Peanut was content in her bed, so I figured I would get another half hour or so of sleep. I woke up over an hour later, and she was still quiet! I walk to her room and she's not there. I look down the hall, and she's sitting on the living room floor watching cartoons. I said to Monkey "Wow, I didn't hear Daddy get her out of bed this morning when he left" and he said "That's because I did it". Wow! He clamped her feeding tube, turned off her feeding pump, disconnected it from her stomach, and then managed to lift her 30 pound cuteness out of bed. Carried her down the hall, and put on her favorite cartoon channel. Isn't he amazing!!!

My beautiful Peanut girl ... where to even start! I am thankful that she is here in our house and doing great. There are issues and worries but overall she is amazing. I can remember every word of the PICU doctor in March 2005 telling us that we should really consider removing support. That if she ever woke up from that incident, she would be "what people call a vegetable". That perhaps if we didn't decide to remove all support, we should consider placing her in a home for disabled children. WHAT? Today she is AWESOME! She is crawling, playing, "talking", walking in a gait trainer, just plain AWESOME! How little faith that doctor had in her. How miraculous her recovery from an 18 minute cardiac arrest was. How THANKFUL I am to be her mom!!

My sweet husband .... even though many nights I want to strangle him .... he is such a good daddy. He gets up at night with Peanut and rocks her back to sleep. He plays with Monkey, he is just a great dad. I am lucky to have him!

We have such a great extended family and friends. We are so lucky to have people that will take care of Monkey at a moment's notice, if something happens to Peanut. We have friends that drop food off at the hospital for us, friends who celebrate every tiny thing our Peanut does. We have so much to be thankful for.

How about that plastic g-tube in her stomach? I am thankful that it keeps her going! She refuses to take a single bite by mouth. It is the only reason she is healthy, nourished, and alive!

What about the Mitrofanoff stoma in her stomach? The little dimple hole at the end of the loooong horizontal scar on her belly. The one I was scared of so much, convinced there was no way this was a good idea. What a blessing it has been! I can catheterize my Peanut with no assistance, and with no pain or inconvenience to her. It is one of the best things we have ever done for her!

Her doctors, nurses, therapists ... who never give up on her. Who constantly shower her with love and support, above and beyond what is in their job description. Our new neurologist, who I can email any time of the day and get a response within 12 hours. How thankful I am for him!

And all my friends online. How completely thankful I am for having "met" you all. Moms who understand, moms who get it. Moms who are walking the same walk as we are. Moms who love Holland as much as I do, even though they were really headed to Italy.

Happy Thanksgiving everyone. I am TRULY blessed!!

Tuesday, November 24, 2009

I am a texting addict and I need help.

I have had my Blackberry for almost two years, and I thought I had unlimited texting. Every month our bill varies anywhere from $150-250! Quite a window. However my husband pays the bills, so he has never called to find out what is going on. I am switching from AT&T to Sprint next week and getting a new phone, so they pulled up my current account. Turns out I have only 200 texts a month, and then I am charged ten cents each after that. I just looked up my current bill online. The billing cycle started on Nov. 14th, so it's been 10 days. I am at 462 texts. Shoot! No wonder my bill is SO expensive!!

So you know what I did? I sent texts to everyone telling them not to text me this week. Duh, that took another chunk of change to send them.

I need Texting Anonymous!

Monday, November 23, 2009

Missed a few days of blogging ...

I've mentioned before that I'm the PTO President at Monkey's school. And yes, I admit that I am InSaNe! It's not like I didn't have enough on my plate before I took this on ... LOL. Anyway, December means time for our big Winter Festival! We bring in snow for a sled ride hill. I know that sounds silly to lots of you, but it never ever snows here. We can drive a few hours to snow, but a large percentage of our student body has never been to the snow. So we bring the snow to them! We also have carnival games, food vendors, craft boutique, santa pictures, and a raffle.

It's a LOT to plan. Things to schedule - lights, table, booth rentals, games, etc. Arranging that many volunteers is hard. It's over 50 people at the least!

So I have been stressing out a LOT lately. Ugh, I hate stress. Luckily two other board members came and kidnapped me Saturday afternoon and we went out for dinner and beers. The only rule was NO TALK ABOUT SCHOOL. Yay! :)

In Peanut news, not much has changed. She has had a number of seizures today that are different than before. She is sitting on the floor watching TV or playing toys, and she just falls right over. Plop, just like that, and then sits back up. Poor thing. She just looks at me with this expression like "What the .... ?"

Today we go up to the second dosage level of her Keppra. Hopefully it will start kicking in soon.

Something fun, tonite my Monkey and I are going to a Ducks game. (NHL hockey game) We got the tickets free from United Cerebral Palsy. I am excited to spend time with my boy, he's such a sweetheart. I imagine I will be talked into buying overpriced cotton candy and soda. :)

Wednesday, November 18, 2009

She had a seizure at school today

They sent a note home in her communication book that she had a seizure while they were catheterizing her this morning. Oh and by the way she did the same thing yesterday. Uh, really? Because I picked her up yesterday, she didn't take the bus home. And no one mentioned it to me. Seems to me that I should be told every time she has a seizure at school! Especially since I have specifically asked to be notified.

At least they were both short lived, less than a minute they said. The neurologist said to expect more seizures than normal while we wait to get up to the therapeutic dose of Keppra. That will take four weeks.

I hope that my Peanut doesn't have too many seizures in this time ... or that they at least stay short like these ones were!

Tuesday, November 17, 2009

Check out this giveaway, it's beautiful!

How cute would this look hanging in my Peanut's completely pink and girly room? Enter the drawing to try and win it for your own room! Simply go to 5 Muse Designs blog and leave a comment for a chance to win. :)

Starting Keppra today

The neuro agreed that the Clonazepam is not a great option for another two weeks, while we wait for the Lamictal rash to go away. So we are starting the Keppra tonite.

Lots of you have said it's a great drug for your kids with little side affect, so I am praying for the same for my Peanut!

Monday, November 16, 2009

Waiting for the neuro to call me back

I decided this morning that enough was enough, and I officially hate this Clonazepam. My Peanut is gone. She is this crying, sad, whiny, sleeping, vacant, fogged over shell of herself. It sucks.

I emailed the neuro this weekend and he said it definately sounds like the side affects of Clonazepam. I had asked about Phenobarbital and he said that it has the same side affects but "usually much less severe". Well hello then - can we switch? He didn't answer my email again, so I just called and left a message with his receptionist.

This fog my Peanut is in, is crummy. She is so sad all the time, like she's depressed. My girl is ALWAYS smiling and ready to giggle!

Also, she has had some seizures yesterday and today. Last night when she was asleep she started breathing really funky, and then her left arm started twitching. Her eyes fluttered open and shut. It lasted a little over a minute. Today she's had three head drop seizures. Ugh.

Of all the issues we have dealt with, this is the hardest emotionally on me as the mom!

Sunday, November 15, 2009

I forgot to post the sensory play picture!

In all it's glory. And yes, that is what you think it is.

(Sorry if you have a sensitive stomach! LOL)

Thursday, November 12, 2009

In a daze ....

Evidently my girl is overtaken by the Clonazepam. She is lethargic, quiet, in a fog. To be honest, she looks wasted. But - no seizures in two days. Is this the trade off we have to accept? Ugh!

We are only supposed to be on the Clonazepam for a couple of weeks until the rash from the Lamictal is gone. Then we switch to Keppra, which the neurologist says doesn't dope the kid up like the Clonazepam.

For those of you with kids on Keppra or Clonazepam - does this play out for you? Was your kid drugged up on Clonazepam? Are they drugged up on Keppra?

I hope not. I am really missing my smiling, talking Peanut.

Wednesday, November 11, 2009

On the road to recovery!

I took Peanut to the neurologist first thing Monday morning, after her already scheduled renal ultrasound. He said that he only sees a Lamictal rash 3-4 times a year, and hers was the worst he has EVER seen. He said he really thinks we were thisclose to Steven Johnson Syndrome, and he was relieved that I took her to the ER when I did. Ugh! Me too. The steroids are doing their job, the rash is a ton better now.

He said that it can last up to 3 weeks! Even when it looks like it's gone, if she gets hot or cries hard or something it can pop back up.

He put her on Clonazepam for a couple weeks. It's a seizure med but most kids build up a tolerance to it and have to keep upping the dosage, so he doesn't like to use it long-term. The good thing is that it doesn't have a rash as a side affect, so it's safe to use now while she does have the rash.

Once the rash is totally gone, we are going to put her on Keppra. We will wean up to a full dose over three weeks, and then wean off the Clonazepam. He said it's really common for people with epilepsy to have to try numerous anti-epileptic drugs before finding the right one for them.

The MRI results were negative for any growth, lesion, or cyst on her brain. This is FANTABULOUS news! It means no worries over what it is or how to take care of it or contemplating brain surgery. Hurray!

This does mean however that her epilepsy is idiopathic, meaning it has no known cause. He actually said that is the best type of epilepsy, because you don't have to consider brain surgery. He also said it's usually controllable by medication, once you find the right one.

So we're just hanging in, waiting for the rash to go away. Enjoying our day off today for Veteran's Day. Getting ready for her big party on Saturday, which is going to be made harder since our nurse just cancelled for tomorrow and Friday.

I have a great photo to post later of Peanut enjoying some sensory play. Let's just say it was something smooshy, which she hate to touch normally. Evidently though this was okay to touch and smear. LOL I'll leave this post on that note! ;)

Monday, November 9, 2009

It's a little better today!

We woke up to a pleasant surprise - the rash is a little better! Definately not gone, and definately still insane. But better. :) We went for the renal ultrasound first thing this morning, the lady freaked. I told her it was a medication reaction and showed her the ER discharge papers, and she was okay with it. So hopefully we'll get those results soon, and it will show some improvement in her hydronephrosis!

We have a 10:30 appointment with the neurologist. We are going over the MRI results FINALLY, and talking about the new seizure med.

We are having a (belated) birthday party for Peanut this Saturday, so hopefully the week will calm down!

Sunday, November 8, 2009

Pictures from bedtime

The rash just keeps getting worse! The ER doc said that it would get worse before it got better. He wasn't joking! Poor poppet. :(

We took a trip to the ER today

The rash was worse than ever late this morning, and her face started swelling. We took a trip to the ER. Peanut ended up getting a massive dose of steroids, and orders to continue with Benadryl around the clock. We have to call the neurologist in the morning and get an appointment for tomorrow. We need to find a new seizure med to start her, he says probably Keppra.

And she has a renal ultrasound in the morning. The ER doctor said to still take her, and show them the discharge papers that show that it's just an allergic reaction and not something contagious.

We went by my parent's house for dinner. Yum!

And worse yet this morning

Ugh. The neuro is supposed to call me this morning. She still has no sores on her lips or anything weird with her eyes, but the rash is definately worse again this morning! I wonder if it's not related to the Lamictal, but is something else?? I will ask him when he calls this morning. I surely can't take her to school looking like this. She has a renal ultrasound scheduled for the morning, I imagine they will freak if I bring her in looking like this!

Saturday, November 7, 2009

Rash is worse now

(UPDATED TO ADD) - I just got off the phone with the neuro, he looked at this pictures in his email. He said it still looks okay to stay home. He gave me the warning signs to look for, for steven johnson syndrome. We are to watch closely for chapped lips or sores on her lips, and anything abnormal near her eyes or vagina. If anything like that pops up, we have to go to the ER. How much sleep do you imagine I'll get tonite? I am going to sleep on the floor in her room and set my alarm clock for every two hours. Looking up steven johnson syndrome online scared the crap out of me!

We gave her Benadryl at 12 noon, and he said to administer it every 8 hours. It's 7pm, so we have an hour to go. The first dose didn't help the rash at all, in fact it's much worse now. Any part of her that wasn't covered before, is covered now. And it's much brighter.

She was grumpy all afternoon, but we haven't seen any sores in her mouth, which is what he told me to look for.

I just put her to bed with her sleepytime meds (she won't fall asleep without drugs). I just emailed some pictures to the neuro, and paged him again. I'm worried about going to sleep, if the rash is getting worse.

Lamictal Rash

The neurologist warned me about the possibility of a rash with Lamictal. He said that it could be really dangerous, and to call him immediately if we notice it. Today we are almost 2 weeks into Lamictal usage, and my Peanut woke up covered in a rash. I called him and he said to stop the Lamictal immediately and give her Benadryl every 8 hours. He mentioned that Benadryl can lower seizure threshold, added in with stopping the Lamictal, so to expect more seizures than normal. But hopefully the rash will go away.

He will call tomorrow, to see how it looks. If it gets worse, she gets a fever over 100, or develops mouth sores, we are to go straight to the ER.

I hate seizures!

Friday, November 6, 2009

My heart is breaking for another family .....

Gavin Owens is a mito kid who has fought long and hard. He is not in the last leg of his earthly journey and his family is preparing to say goodbye. I literally cried myself to sleep last night thinking about Gavin. I don't even know him or his family, but just the thought of saying goodbye ..... it's too much. :(

Thursday, November 5, 2009

We're home and waiting for the results

The MRI people wouldn't tell me anything, so I have no clue if it was normal or not. Her MRI's are never "normal", but you know what I mean.

It took five tries to get an IV in her little foot. Then she got a flu shot and h1n1 shot while we were there. Seven sticks on her little perfect body. Ugh, it makes me quesy. :(

I just sent an email to the neurologist, reminding him that I am anxiously awaiting the results.