Almost a New Month

Things seem to be getting worse for Gracie this month in terms of seizures. Pretty much since she started the ketogenic diet, all of her seizures have been explained. Basically, they had an explanable cause such as an active illness or the onset of an illness. All until this month.

She has another seizure last night - this is the third presumably un-provoked seizure this month. The seizure lasted 25+ minutes. She was taken to the ER via ambulance. While there, she started seizing again and it lasted about 5 to 7 minutes. She had blood drawn in between seizures.

Imagine our surprise when her Depakote level (Valproic Acid) came in at 43. Her theraputic dose is between 100 and 120. She has been as high as 150 before. But never this low. The last time she was seizing out of control like this, her Depakote level was in the 80's.

They gave Gracie an IV form of the medicine to bring up her level. Unfortunately, this caused her blood pressure to tank and her heart rate to go up. Fortunately she was holding her oxygen levels on her own or I would have been in a full-blown panic. This reminded me of when she went into septic shock. Thankfully, this was not a repeat of that episode!

She got transferred to CHOP when they did a full work up on her as well. By then, all of the Valium and Adavant given to stop the seizures were starting to wear off and the effect of the IV Depakote was wearing off so her blood-pressure stabilized. She was given the all-clear and sent home a mere three hours after arriving at CHOP! When Grace recovers, she rebounds quickly.

We have instructions to up her Depakote and to add an additional sedative for the next few days to cover her while her blood levels rebound. I am hoping that by the time the calendar page turns to a new month, that we will be stable again and working on the next one hundred day span of no seizures.

One Year Anniversary

Today marks one year since Gracie began this journey known as the ketogenic diet. Wow.

When we first started this diet, I wasn't sure we could last one week, and one month seemed like a long shot. Here we are one year in and it was no where near as bad as I feared it would be at the start. We are at a manageable point with the diet. The benefits are still there.

First and foremost, Gracie has had far fewer seizures in this past year than in prior years. She went six months seizure free and that had not happened at any point prior. The seizures she has had have been much shorter in duration than in prior years. She has much better balance, speech articulation, social interaction and language skills than she did a year ago.

The pictures keep loading out of order. I'm just going with this order - sorry! The first picture is last June when Grace was refusing to eat. The second picture is Grace on her third birthday (January 2009). The third one is from her fourth birthday (January 2010). There is not much difference from one birthday to the next - she regainged the weight she lost last summer.

Too Much Information?

Is there such a thing as too much information? Maybe! Grace went for her ketogenic diet blood work last week. The lab sent a 'courtesy' copy of the results to the house. Of couse I opened it and reviewed them. There were a lot of out og range results. So I looked all of the tests up on the internet.

Of course, what I saw on the internet freaked me out. By the time I actually sent an e-mail off ot the neurologist and the keto team, I was in a full-blown panic. I was starting to make a list of all of the things I would need to pack for a stay in the hospital - as I was certain that all of this meant she was very ill.

Gracie's neurologist and the whole team are wondeerful (I'm sure I mentioned that before!). I have two responses back within 30 minutes - one from the doctor and one from the nurse practitioner. The nurse practitioner replied that everything was fine - nothing to worry about. If the vitimin D levels stay low, we may need to add a supplement. The neurologist replied with a much longer e-mail - explaining what the test could indicate (addressing the fears of what I read on the internet) and how those were ruled out for Grace. Many of the results were where they want her to be given the diet she is on. And he ended with 'nothing to worry about'!

I realized somehwere mid-panic that this was the first time the lab sent us a courtesy copy of her results. Interestingly enough, Tom had lab work done the same day at the same lab and there were no courtesy results for him. The fleeting thought crossed my mind that these results may be exactly what she is getting each time she is tested - I am only seeing them unfilted this time. Of course, that thought just flitted through my head and I went back into full panic - until everyone replied - nothing to worry about.

Happy Birthday Gracie

Today is Gracie's 4th birthday. She is very excited about it. We had a birthday dessert and candles and presents with some family on Sunday. The pictures are from that.

The birthday dessert was something Tom whipped up that morning using heavy cream, cream cheese, Splenda and vanilla extract flavor. It tasted a bit like cake batter. The key was that everyone had a spoonful of the same thing! It also helped that it had enough consistency to support the candles!

I didn't get to posting all though the past month. Everyone has been relatively healthy, we have just been busy! Thanks for checking in on us.

New Traditions

December through to January is a busy time for Gracie and for that matter all of us! Gracie's family day (the anniversary of when she was placed in our arms in China) is December 12th, then we have Christmas, and her birthday on January 3rd. There are all of her big occassions for the year. This year, I want to start new traditions that do not involve hospitals!!

Last year for family day and for Christmas, Gracie was in the hospital. For Family Day, she was in with pneumonia and we discovered she was allergic to sulpha drugs (of course, after having received two doses of them!) We totally skipped over celebrating her day. For Christmas, Grace had a seizure in the early afternoon. She had excellent timing as she got to open all of her presents from Santa before needing to leave the house and prior to us putting the dinner in the oven! We spent the remainder of Christmas in the ER. We celebrated her birthday with no problems - but as we said that was her last birthday cake for a while as she was starting the ketogenic diet the next week.

This year, we need to celebrate family day in a new way - the traditional Chinese meal will have to change as she can't eat many traditional Chinese dishes - too many carbs! We did purchase gifts for both girls from China to give them on their family day. We will be able to give that to Grace and maybe go out for crab legs (or as Grace calls them, 'crap'.)

For Christmas, we are looking forward to just simply staying at home this year! We promised the staffs at the local ER and at CHOP that we would not be seeing them until Easter. We gave each other our holiday greetings before Gracie left the hospital last week!

For Gracie's birthday, we are trying to figure out something that does not involve food. Gracie knows about birthday cake and candles. Tom has been working on some recipies for cheesecake so that we can try a keto-cheescake with candles for her. It has to be something that we can serve to everyone as Gracie catches on right away if she gets something different! I think the cake and candles will be the key thing - and of course the singing :-)

The pictures are of recent hair cuts and a picture of Rita and Gracie with Rita's classroom project, Kingston. Kingston came to stay for two nights in the middle of November.

Thanks for checking in!

Back Home

Gracie did her miraculous turn-around thing again and we are back home tonight. We were given the option to take her home or keep her longer for observation. We opted to take her home and just keep an eye on her here. She was drinking just fine so dehydration was not an issue. She was pretty much back to baseline (aka what she was like prior to the seizure). The only lingering issue was her balance. In the past, this returns but it takes a bit longer. The doctors were actually concerned about what germs she could pick up while still in the hospital. They felt she would be better off at home if we were comfortable taking her home. She is currently tucked in and sleeping safe and sound at home.

This was a rough ordeal for Rita this time. Rita likes to get to see her in the hospital and see for herself that Gracie is alright. We didn't have her do that this time. First of all, if she got to the hospital right away, I'm not sure it would have reassured her any. Secondly, Rita would be confined to the room Gracie was in rather than get to explore the play rooms (this is often a perk she enjoys while Gracie is in the hospital). Thirdly, there is no need to expose Rita to more possible germs. Her school was closed today and tomorrow due to a water main break so Rita had a lot of time to think about Gracie today. Rita also caught her seizure and I think it scared her - she did amazingly well, but it scared her nonetheless. Tonight, Rita was clingly and emotionally needy. I think it will be good for her to be home tomorrow with Gracie and a parent. It should help her to settle back down.

Thank you for checking in. Please keep praying for Gracie and Rita. Thank you!

Back in the hospital

Gracie is back in the hospital tonight. She has pneumonia - again.

She had a seizure this afternoon while outside playing with Rita and two friends. Apparently, Grace felt it coming on and just sat down in the grass. She then laid down and started to shake. Rita came running in the house yelling that Grace was laying down just staring up at the sky and she was shaking. I grabbed the Diastat, the medicine to stop the seizure, and ran out while Tom just ran. We took her inside and gave her the medicine - the seizure did not react. After 5 minutes we gave her another dose and called for the ambulance. Gracie's seizure lasted about 25 minutes total and she did not wake up afterwards. The doctor and medical team at the local ER were quite concerned. When Tom and I got to grace in the yard, her head was on a piece of wood (for landscaping). We don't know if she hit her head or not. She had a CT scan and everything was fine - although it did confirm sinus congestion. She had a chest x-ray and it confirmed pneumonia - in both lungs.

Apparently there was some concern that she was in septic shock again. The transport plan to move from the local hospital to CHOP called for her to go to the PICU. By the time the transport team from CHOP arrived to get her, Grace had finally woken up a bit - enough to alleviate some of the fears the doctors had. She was taken to 7-West - Neurology. As she arrived at the room, she finally started to speak again - my sign that things will be alright. She is being treated for pneumonia and there are plans to start respitory therapy in the morning.

Thanks for checking in on us and please take a moment to say a quick prayer for Gracie's healing.