You've all seen her smile, now see her pout!

This girl was born with the best pout ever! When she was first born and in the nursery in the hospital, the nurses mentioned the pout. I walked down to get her and they said "Oh, she's the one with the pout!" I knew then that we were in trouble! Hehe These pictures are from last night when she was going to sleep. She had gotten her bedtime meds and was rocking with her nurse Angelina. We've had this nurse for over 2 years now - she is truly part of our family. Peanut was pouting because it was bedtime. She does it every night! She's so tired and cranky, but hates to sit and go to sleep.

This last picture was taken by Monkey. He found Cookie sitting on the couch like this and took a picture. It's hilarious!

Come vote for me!

I recently signed up for a site called Picket Fence Blogs! It's all about getting visitors to your blog and spreading the word about who you are. It's based on a rating system, so the more people that vote for you, the higher you are rated! So ... help a girl out! Click on the link over there - on the right side of the screen - or the one right here in this post. It will log your vote for me. Thanks for helping. Let's show them that parenting a child with special needs is awesome! :)

Seriously?

I just got my car back on Tuesday from the body shop. It was there for two weeks, being repaired from my accident. I was rear-ended, and pushed into the car in front of me. My front end was being repaired, but since the guy that hit me and caused the accident took off, I had to pay my $1000 deductible. OUCH. Peanut's wheelchair lift on the rear of my van has to be replaced by the insurance company, which is supposed to happen this week.

Okay so I got my van back Tuesday right? And some !(#&# hit me today!!! I can't believe it. I was on a main street, and he came from a side street and drove right into me. I saw him heading for the side of me, which is where Peanut sits right behind me. I jammed on my gas and he hit the back corner only, thank God!

We pulled over and the driver jumps out and his two passengers jump out and they are freaking. Turns out it's a buddy's car, and the guy driving has no license! They want us to tell the police that the owner was driving, even though he wasn't even IN the car at the time. We said no way, we would tell them the truth. One of the passengers ran and got the car owner from his apartment while we waited for the police. By the time the police got there, they had ALL run away except the car owner! The guy was pissed. The police said that the guy driving the car should go to jail, and that if the owner didn't go find his friend, his car would be towed. The guy ran around trying to find him, but couldn't. So his car got towed and will be impounded for 30 days. The policeman says it will be expensive to get it back.

Luckily, the owner of the car has insurance. Once the police report is done, I can give the information to my insurance company to get it repaired. So I won't have to pay a deductible this time, but HELL!!!! Damnit, it is not easy being without a car! I haven't even had it back for a week.

Man I was pissed! (Okay, AM pissed. Not WAS pissed. I'm still pretty damn pissed)

New Glasses!

Doesn't she look sweet? :) She got new glasses yesterday. Good thing, since she completely broke her old ones. They get so bent and mangled. When she doesn't want them on, she grabs them with her thumb and forefinger and pushes them up onto her head. If they slip back down on her face, she grabs them, pulls them off, and throws them. Needless to say, the glasses don't usually like all that manhandling. ;) These new frames are super bendable and twistable and fairly unbreakable! Good thing, our last frames only lasted 6 months before totally breaking, same with the ones before. Hopefully this will be Peanut-Proof!

Epilepsy Alliance

I'm headed off to an Epilepsy Alliance support meeting. I am excited, as weird as that sounds. Peanut's seizures are so unusual and unrelenting. I will be glad to pick some people's brains! :)

Poor Pathetic Pup

If you remember this post, our dog Koda had a bunch of cancerous and non-cancerous tumors/warts/growths removed recently. We traded the Cone of Shame for this neck brace style thing, that stops her from chewing herself but allows her to go out the doggy door. The dog is determined to scratch the stitches though! She rubbed up against a tree last week until one of the incisions on her side reopened. I took her to the vet, he put some staples in and bandaged it up. I was supposed to change the bandage yesterday. When I took it off, UGH! Instead of one hole, now there are three?? I took her right back to the vet, and he said it's probably from an infection underneath the skin that was working it's way out ... or something. Anyway, he redressed it AGAIN. I had to figure out what to put over it until we got to his office though, as there were three gaping, bleeding holes on her side. So yes ... this is what I did. Oh, and yes, that is a pantyliner held on with packing tape. :)

Dang it. They're back.

Okay, so I called UCLA and talked to the Patient Referral Service. They took all of Peanut's insurance information and said that they got her records faxed over this morning. But, we still can't schedule an appointment! I now have to call back in 7-10 business days to schedule. This gives the doctors time to review her records first? What the hell ... I only hope that they aren't booked WAY out by the time 7-10 business days comes around! :)



We went 16 days with no seizures. I say "went", because as of yesterday we are back to ground zero. She had one on the bus on the way home, and by the time she was dropped off she was knocked out. This morning she must have had one before we got into her room. By the time we went in, she was drooling, choking, and hot. I got her cleaned up and she was jittery, twitchy. She seemed okay so I sent her to school with a note.

Good thing I just got a call from UCLA epilepsy center with her referral. They are waiting for medical records from our current neurologist, and hopefully will call me back today to schedule an appointment. I only hope it isn't too far out!

Cone of shame

We have three dogs, and one of them doesn't really belong to us. We live in a house that my parents own, and therefore we are responsible for their dog. Koda is an 11 year old beagle/husky mix. She had a cancerous tumor removed a while ago. I thought it was a prolapse coming out of her girly bits, but it was a tumor. We recently took her back to the vet because she had a few warts and some other mystery bumps. Some of them were just warts, but some of them were also mast cell tumors. That's the same cancer that she had removed last time. So ... the old dog went in for surgery to have all her bumps and lumps removed yesterday. She came home with shaved spots all over her, and stitches in each place. The vet left two tumors that he said are fatty tumors, because they don't hurt anything.




How pathetic does this dog look? She has the thick fur of a husky, so it looks really funny. The cone of shame doesn't fit out the doggy door, so we have to constantly let her out and in, or leave the back door open. She has already mastered ramming into the back of your leg with the cone to get your attention. The cone comes off in 10 days.



The cone of shame .. I feel like we should decorate it or something!

Knock on wood ....

This cute Peanut LOVES to sit in the rocker with Daddy. Check out the hair!

Still no seizures. The last one we saw was last Friday, so over a week ago. KNOCK ON WOOD! :) She has been SO happy all week. Smiling, hardly any crying, it's amazing. Obviously the seizures seriously affect her moods and behaviors. It makes me wonder how many she has that we don't see, in between the big ones!

I talked to the dentist about her loose teeth. He would like to pull them when they get super loose. Unfortunately, her insurance only allows one office visit every six months. So if we need to go in before November, we have to pay out of pocket! Ugh. She is scheduled to go to the OR on August 27th for a cleaning, xrays, and impressions .... if the teeth are still in by then he will pull them. I guess we'll see what happens. I don't think I could pull her tooth myself. :( I imagine we will be paying out of pocket at some point to get them pulled. I can't picture him able to get in there with her not sedated though - she doesn't let ANYONE in her mouth! We'll see what happens.

I have a doctor's appointment Friday morning to get a referral to a hand surgeon. I posted before that I was having a lot of pain with my right hand, now it's even worse. I can't brush my hair with that hand, can't hold a drink, can't turn the steering wheel. It's SO bad. I have a high pain tolerance, and this is getting to be too much. The hand therapist said I could do therapy twice a week but will need surgery regardless, and then of course more hand therapy. So we are just moving on to the hand surgery, and then therapy. Ugh!

Lastly, Peanut gets her reverse walker on Friday! I am Sooooo excited! She is getting a Crocodile walker with a snugseat. I can't wait! :)

So much cuteness

Look at this Peanut .... is she not the CUTEST thing ever? I am so madly in love with her. :) This is the first time she's ever ridden one of these silly quarter rides outside a grocery store. We stood right at the side, but she sat up and even held on, and rode it by herself!! It was so cute.

I noticed last night that her two front bottom teeth are loose. She's almost 7, so it's normal but it still caught me by surprise. Maybe it explains why she is always biting us lately? I think I posted last week about it, we call her Piranna Peanut!

Why did two wiggly teeth make me cry? It makes no sense .. but when I felt that they were loose the other night and she was sleeping on my husband's lap, I started crying. She's growing up ... and still so little and completely dependant. It's crazy! Now I need to call the dentist and let him know. Do I leave them be, and let them fall out on their own? Won't she choke in it, or aspirate it? I am concerned! And verklempt, obviously. :)

Heart Made Blessings

Have you guys heard of this site, Heart Made Blessings? If you know how to crochet, it looks like a GREAT cause! You send in squares and they make afghans and bearghans to send people. They look SO soft and cuddly! :)

A reprieve perhaps?

We upped Peanut's Trileptal dose on Saturday, and then today. Today it is at the goal dosage finally.

KNOCK ON WOOD - since Sunday, we have not seen a single seizure. And the gagging/retching/choking/screaming she was doing at night and in the morning is gone. So perhaps it really was seizure related!

We haven't gone this long without seizures in forever. Please pray it continues!

This next part is for Cathy, Annabel's mom. You posted about her weight gain on the TPN, and I had to show you these pictures. Peanut was on TPN for 6 months or so, and the lipids caused her to gain a ton of weight. She was so bloated and fat!

It's up and running ... be the first to check it out!

Happy Fourth of July!

This is how I found Monkey and Hannah this morning. Isn't it adorable!! :)

We stayed home this year, and just relaxed. We bought a new bbq at Walmart and came home to grill and set off small fireworks in the backyard. Fireworks are illegal in our city, but in some nearby cities they are legal. Everyone here does them anyway, but we only do small ones. Our neighbors put on quite the show for us so it is okay. :)

While The Hubs was bbq'ing, I cleaned out the swingset. Monkey hasn't played on it in a while and it was covered in spider webs and just dirty. Peanut's swing was filthy. After it was cleaned off (and numerous black widows were killed! Yikes) the kids had a blast on it. :) I know it looks sad in the pictures, but I am going to get some paint this week and fix it up.

My sister and her husband came over also. The adults watched Shutter Island, which was a great movie! I thought it was going to be totally different than it was, and WOW it was good!

Peanut was asleep and in bed before we started the fireworks, she doesn't like loud noises at all. I hope you all had a good Fourth!

The Sodastream giveaway winner is .....

Seriously, ignore the goofy face Monkey made in the picture. The kid cannot take a normal picture anymore! He either looks ridiculous, or stoned. LOL

I don't know how to do that fancy winner generator without paying for the service, so we did this the good ole fashioned way! :)

Denise!

CoNgRaTuLaTiOnS! I think you and your kids will LOVE this. :) We do! Please email me your address, waffle1313 @ gmaildotcom. I will forward it on to Sodastream, and the gift package (with ginger ale, cola, and root beer) will be on it's way to you!

Last chance to enter the Sodastream giveaway!

I know I said we would draw a name on Friday, but this week has been nuts. Sorry!

Monkey will draw a name tomorrow morning. If you haven't entered yet, do it now. :)

The giveaway is a few posts down.

It's plantar fascitis, a heel spur, and a ligament/tendon problem ...

Okay, so that's an xray picture I found on the internet. LOL But I did go for xrays today, and they did show what my doctor called "a massive heel spur". So the diagnosis is Plantar Fascitis and I was sent off to the medical pharmacy place to spend $80 on a night stretching splint thing and some heel cups. Ugh. :( If it doesn't feel better in a month or so, I am supposed to call back for a referral to a podiatrist.

My right hand is definately a ligament or tendon issue, and not a bone. I guess that's good news? Except that is is almost definately coming from the two growths on my ring finger, and she's concerned about that. I am headed to a hand therapist to see if some therapy alleviates the pain. If not, then she is sending me back to the hand surgeon. Ick. I've had surgery on this same finger before, and the thumb on this hand as well. Not looking forward to that again, so PLEASE pray that the therapy helps!

Now to get through Peanut's appointment tomorrow. Luckily it's just a "check up" and getting a referral started, nothing serious. Phew!

Now I am off to ice my poor heel. :(

Heard back from some of the calls ...

I am going to the Nurse Practitioner at 2:00, my doctor is full for two weeks. The Urgent Care sent them a message that the tendon in my hand felt "strange to the touch". What the hell? I wasn't aware you could touch a tendon. They didn't order xrays or an mri or anything so ... who knows. It hurts like hell, that's what I know.

Peanut has an appointment tomorrow at 2:40 to see her pediatrician. Supposedly she just got back today from vacation so is going to send in the chloral hydrate script today. We'll see ... if not, I'll get it tomorrow. We are going to start the process for getting her to UCLA Epilepsy Center, and quick.

Now I need to call her therapy center and schedule an appointment because her reverse walker and wheelchair repair parts were approved. Then I need to call the pediatrician's authorization department and check on her Sleep Safe Bed. I didn't get a denial, but I didn't get an approval either ...

In there sometime I need to do laundry, dishes, prepare dinner, and get ready for our yard sale on Saturday. Does anyone need some crap? I am selling a LOT of it on Saturday. ;)

Waiting for phone calls .. it feels like that's all I ever do!

Do you ever feel like this is ALL you do? Make phone calls, wait for phone calls, hate phone calls!

Peanut's mornings are rough. She wakes up retching, choking, gagging ... turning blue, spitting up. She has a fundoplication in place, but she still spits up saliva all morning while she adjusts to being awake. This had gotten much better lately, but suddenly is back in full force. The first hour she is awake generally sucks. I called the GI and the Neuro about it yesterday. The GI thinks it's seizure related, and I get that. When she wakes up in the middle of the night screaming and choking, we assume she's had a seizure. So the neuro says to increase her Trileptal a little quicker than we have been (we're still titrating up to our goal dosage). If she continues to choke/gag/retch but not have visible seizures during the day, we can assume it's not seizure related. The GI says it is most likely related.

My question was, why not admit her for a 24-48 hours EEG? Then we could watch exactly what is happening during her choking spells, and see if it is indeed seizure related or not? I understand that the EEG would be abnormal and show seizures, because we know she is having them. I get that ... but why not use the EEG to get to the bottom of the retching issues? Yesterday she retched so long and so hard that she threw up her overnight feed past the fundoplication. How horrible must that feel!

I am frustrated. Of course, the GI office didn't call me back yesterday. I love love love the GI, but hate hate hate his office.

I have a call in to the pediatrician to get Peanut referred to UCLA Epilepsy Center. They are widely known to be "the best" in the area for hard to treat epilepsy. Cross your fingers that the referral process won't take too long and we can get in quickly. Well, as quickly as anything in the medical field goes. ;)

On a different note, I have a call in to my doctor as well. I went to the Urgent Care on Saturday because my hand is hurting. I can't even brush my hair with my right hand, it hurts so bad. Can't lift my purse with it, nothing. I had surgery on my right ring finger a few years ago, they were sure it was bone cancer. There was a lump in my finger - turned out to be a bone calcification. Well now it's bad and bigger than ever, and there is a cyst on the underside of the same finger. The Urgent Care doctor said she thinks that the growths are encapsulating the tendon or something? I don't know ... she gave me one of those dumb wrist braces you wear for carpal tunnel syndrome and told me to follow up with my doctor. So I called, but of course have not gotten a call back.

Oh, and Peanut is almost out of Chloral Hydrate. You know, the drug that is the ONLY reason she ever goes to sleep at night? The one that keeps us from all going totally insane when she's so tired and pulling her hair out and screaming but can't fall asleep unassisted? That one. Which ran out of refills, and the doctor hasn't called the pharmacy back on yet.

Stupid phone calls. Sometimes they rule the entire day.