Monday, May 31, 2010

Seizures, a weird eye thing, and a new car seat!

We have noticed that since Peanut's big seizure day on Wednesday, her eyes are weird. Her right eye isn't open as wide as her left. It can, and at times does, but for the most part her right eye is always closed more than her left. In the ER they told me it was a post-ictal thing, but almost a week later? It's a bit worrisome. I am emailing the neurologist this picture, which is why I took it.

While I was trying to get a good picture of her eyes, she had an absence seizure. It's the first one I've caught on film! You can see how she is just staring at nothing ... then she flickers a smile and turns her head to the side. I thought she was coming out of it, but she went back into it. Then at the end she starts smiling and is back to normal. She does that a lot we've noticed, comes out of the absence seizures smiling. She starts little smiles and then a huge grin. It seems weird, but it's better than screaming!

Lastly, this is a giant THANK YOU to Junior and Heidi, for passing Junior's car seat on to us! It is so beautiful - the fabric is perfect and soft and it looks like it's brand new. It is SO ideal, I am so happy. Look how great Peanut looks in it, compared to the one she has been in. :) I took the abductor out after I took the picture. She doesn't really need it. She has so much room in this seat and it's so comfy looking. It's totally normal to sit with your knee in your armpit too, right? ;)

Saturday, May 29, 2010

Another .....

Sweet little Carter is in the last leg of the fight for his life. Tomorrow they will be disconnecting his ventilator. It is up to him and God to determine if he will breath again here on Earth or fly to Heaven. My heart is so heavy already from reading about Ben, and waiting to hear about Carter is just too much.

I love having so many blog friends with kids like my Peanut, and at the same time it is SO hard sometimes. :( Please pray for Carter, for his healing one way or another. And please keep his mom and Ben's mom in your prayers as they go through these tough times.

My heart is heavy and I am typing through tears ....

I just sat down to catch up on my blog friends and read that sweet Ben has passed away. I never "met"" him or his mom Becky except online, but I really feel like I know them. I have become so attached to that cute wrinkly little head and his gorgeous big eyes. Becky, your entire family is in my thoughts. Ben will NOT be forgotten!!

Wednesday, May 26, 2010

We had an ER trip today

Peanut had quite a few seizures Monday, and even more yesterday. She slept through half her time at school, which is highly unusual for her. She does not nap hardly ever, and NEVER at school. So we figured she was having a bunch yesterday in between the ones they were seeing. This morning they called me around 10:30 to tell me that she had a tonic-clonic (grand mal) while in her gait trainer and stopped breathing long enough to turn blue. Then she gagged a lot and seemed tired. After that she had a lot of absence seizures back to back, so I went to get her. I took her home and she went into an absence seizure that lasted almost 4 minutes before I pulled out the Diastat. I gave it to her and called 911, and we earned ourselves another ambulance ride to the hospital. She had one more seizure almost 2 minutes long in the ER.

We started Topamax last Wednesday, and upped the dose this morning. We were supposed to up it again next Wednesday. Now we are upping it on Saturday instead, and putting her on Clonazepam for 10 days while we get that Topamax dosage up where we want it. Clonazepam makes her a sleepy, listless girl ... but it's worth it if it keeps the seizures at bay while we get that other med up. Hopefully that will do the trick. Right now she is on Keppra, Topamax, Neurontin, and the Clonazepam. Holy cow ... that's a lot for a kid who never even had seizures until this past August!

The neurologist was comfortable sending us home and told us to come back or call 911 again if she has another cluster. If so, we will be transferred via ambulance to the children's hospital that our neurologist works out of.

If the Topamax increase on Saturday doesn't start controlling the increased seizures, he said we will talk about a newish drug called Banzel. Anyone use this for their kids?

So we are home and Peanut is OUT. Diastat, tons of seizures, and Clonazepam will do that to a girl!

Tuesday, May 25, 2010

That was a long (and short!) weekend

We had such a great weekend! We left at 4am on Saturday and it took 7 hours to get where we were going. Luckily we didn't hit any traffic! We first went to see our friends Ryan and Casey. I met Ryan when she and I were both pregnant in Oct/Nov 1999. Her daughter Casey was born the day after my Monkey was! We have been friends ever since. We live 7 hours from each other, but manage to visit once a year usually. They come to Disneyland normally in the summer, but this year we went to them! We had so much fun. We ate lunch at a place called Fentons, which reminded me of Farrell's. We had great food and then WOW did we have ice cream! Ryan, Casey, and my husband ordered their own treats. Monkey and I shared one. I don't think any of us finished our ice cream, and Ryan was the only one to come close even! She was quite sick after that. Check these things out ... I took before and after shots. :)

After lunch we went to the Jelly Belly Factory. Unfortunately, the factory doesn't operate on the weekends so the tour wasn't nearly as fun as it could have been. We will have to remember to go back on a week day next trip! We got lots of samples, and then stocked up on numerous 2 pound bags of Belly Flops. Monkey was adventerous and tried all of the Beanboozled flavors. I don't recommend this! There were canned dog food, centipide, baby wipe, barf, skunk scent, pencil shavings, and more. They were gross! The coolest part to me is the Jelly Belly art. These pictures are done in over 10,000 beans each and made by hand. There were so many in the tour - Elvis, Princess Diana, and lots of presidents. So neat!

Peanut's hair got a little out of control, so Casey was nice enough to give her this beautiful (hehe) seahorse clip from a Happy Meal. I think Peanut was embarassed by it. ;)

We had dinner together, and then we headed back to the hotel for an early bedtime. Remember we had been up since 3am! Peanut slept from 7:30-10:00 and decided to wake up. She finally went back to sleep at almost 11, but was up at 3:30 for the morning. Yawn! We all got up and going around 8:00. We had breakfast at Denny's and then headed to Heidi and Junior's house. I was so excited to meet them!! It was such a great visit, and she really stocked up my van with equipment. I can't wait to put it all to good use! I really wish we could have stayed longer, it was so fun hanging out with Junior. We will definately be going back sometime in the near future for a longer trip!

We left Heidi's house around 1:00, and headed out for the 7 hour drive home. Luckily again we didn't hit any traffic, even going through Los Angeles. We decided that the 5 freeway is the most DULL freeway. The scenery is nice enough for an hour or so, and then it's just boring!

Check out how loaded up my van was on the way home! And poor Peanut - doesn't she just look exhausted? Sitting in the car for 7 hours twice in two days was hard work. Both kids did AWESOME, and it was a great weekend! Now we wait three weeks and take another road trip, this time to Arizona for the Microcephaly Convention!

Friday, May 21, 2010

Our visit with Ella

I met Denise and Ella on Monday, while my kids were in school. I had to go to the hospital anyway to pick up a copy of some scans. Tuesday morning I had to go back to pick up some records, but Denise was given the morning off by her husband. :) Today Peanut had an opthamology appointment, so when we were (finally!) done we went and visited Ella. It was so cute to see the girls together!

This picture is before the opthamology appointment, when Peanut was still in a good mood. ;)

Holy dilated eyes, Batman! LOL

Our visit with Ella. She is so sweet! I love her .. and Denise is amazing. She is really doing great, or at least she sure puts on a good show. I am glad they are so nearby, and we are at the hospital for appointments so frequently.

This last picture is right before Peanut and I left. Can you tell she was DONE? :)

Super early tomorrow morning we are headed out for our road trip to meet Junior and his mom Heidi. I am so excited!!! :)

Wednesday, May 19, 2010

Topamax question - help!

The neurologist added Topamax as of today to Peanut's med cocktail. He said it comes in sprinkles and pills, and that the sprinkles get clogged in g-tubes. We got the pills, but they are tiny and when we crush them, it's virtually impossible to get it all in a syringe to administer.

Does anyone know if the pill will dissolve? Can I put it in a syringe and pull up some water and let it sit, like I do her Prevacid solutab?

Does anyone use the sprinkles in a g-tube? Do they get stuck, or do they go through okay?

This drug makes me nervous in the first place, so I want to be sure that she gets the full dose every time, no questions.

Thanks in advance ladies, THIS is why I love the Blog World so much!

*** EDITING TO ADD THIS! I just got off the phone with our pharmacist and Topamax can be made into a compounded suspension. I have to get the neuro to call in the prescription and then the pharmacy sends him a message to get prior auth. The insurance company then approves the prior auth and we get it as a liquid. YAY, cross your fingers!

Monday, May 17, 2010

DME companies must take pleasure in screwing with orders

I have come to think that they really get enjoyment out of screwing up orders!

We haven't received our diapers or chux in almost two months. According to our DME company (coughA-MEDcough) they haven't gotten a new prescription from our urologist. They gave me three dates that they "faxed" a request to the urologist's office. When I call the uro office, they tell me that they received ONE request, by MAIL. Not by fax, and not three. Yet when I ask the DME company what uro fax number they are using, it's correct. The urology office then takes a full week to write the prescription, and tells me that it's sent to the DME company. The DME company a week after THAT still says they don't have it. So who's lying?!?! I friggin want to strangle people.

Okay, but I can buy diapers at the store, so we are not in trouble here really.

Oh wait, what I can't buy at the store is her Neocate Infant formula with NO added dha/ara. You know, the stuff that she's not supposed to consume because of her metabolic disorder. That silly little detail evidently doesn't matter to anyone.

I didn't get any formula delivered this month. I called the DME company and pitched a fit. They told me that (again, does this sound familiar?) the prescription had run out and they needed a new one. They agreed to send me out 2 cans on Saturday to get us through until the GI office sends a new prescription. So I get them Saturday, and they are WITH dha/ara. Which is the opposite of NO dha/ara. Hello? Keep in mind that they told me they were sending this as a "favor" to me, while they waited for the new prescription.

When I called first thing this morning, the story is different. They now say that they got a new prescription from the GI on 4/29. So, over 2 weeks ago .... not today. So they had it Friday, when they said they didn't. BUT - it was written for Neocate Infant WITH dha/ara. Ugh .... yeah, the one she CAN'T have. And they can't switch us back to the old formula, because a new prescription supercedes all previous prescriptions.

So I have a call in to the GI office and the Metabolic Dietician. All I want is some damn formula that won't make my kid sick. I didn't realize I was asking for the world.

Oh, and some friggin diapers would be nice too!!

CoQ10 anyone?

I just bought some of this to start giving Peanut. I have done a lot of reading on it and it seems very safe. Some people are adament that it has helped the metabolic/mitochondrial disorder kids. I'm hoping to see something good out of it for Peanut. Do any of you give CoQ10 to your kiddos?

We are getting ready for our weekend trip to see Junior and his mom Heidi on Saturday. I am SO excited! :) She has some equipment for me and some for me to bring back for friends of mine. How sweet is that?

Now if only I could find a Convaid Cruiser or Maclaren Major or something similar, to replace the Cruiser we were borrowing. Our wheelchair lift is a rear external scooter lift, so it's not always feasible to use it. If it's raining or really hot, for example. The Cruiser is a great alternative for those days, and for quick trips here and there. The search is on!

In the meantime, we have another busy week. Thank goodness for our getaway this weekend, we need a vacation! :)

Friday, May 14, 2010

My Mother's Day Present

I forgot to post this in my last massive picture post. :) I had pointed this wall hanging out to my husband and son when we were out shopping a few weeks ago. When they went shopping for Mother's Day, my sweet Monkey saw this and remembered that I liked it. Isn't it PERFECT? I can't wait to hang it up. :)

Sunday, May 9, 2010

Not much to post about, how about some photos?

Be warned, it's photo overload!

Peanut has this weird sore on her back, I noticed it when she woke up yesterday. It is right on her spine, so I sort of think it's a pressure sore? as you can see in the photos she does have kyphosis so she's curved and it could rub on her seat. She's only in her wheelchair an hour in the morning to school, and an hour home though. It's not like she sits in it all day. She's in and out of it at school to go from place to place, but I know she's not left in it for long. What else could this be? It's really weird, and we're just going to watch and see what happens with it for a little while. Okay, so the close-up pictures don't show her back, just her cuteness. I think that counters the hairy back you get a glimpse of in these others. LOL

How about these pictures - this is a bad hair day times two! Hehe she went to bed in pigtails, and this is what her hair looked like the next morning.

These pictures are from an award ceremony that Monkey was invited to the other night. His class did a water conservation project that won. It was a fun evening. As you can tell, Monkey is still mostly friends with girls. LOL He is always surrounded by them! :)

These last pictures are from Peanut's trip to the dentist last week. This plaque is hanging in their bathroom. I thought it was hilarious! :) She was smiling nice and cute when we got there ... not so much after the dentist messed with her mouth. You can see her teeth well in these pictures though. Look how they all fit together like teeth in a zipper. They've been ground down so much from her grinding that none of them are flat or square anymore.

Oh, I have to post one more. For Mother's Day, we went to my mom's house and bbq'ed. My sister gave my Mom a card that said something about how great she did raising us all, etc. Then she wrote this line which she will never be allowed to live down. I highlighted it in yellow for easier reading. LOL She obviously left off the 'nt on one word! Haha It was the funniest card ever. We will surely all use this phrase as a joke from now on!