Monday, March 30, 2009


Over the past few weeks, Grace has made great strides in adjusting to the diet and accepting what the diet means for her. She understands that there are certain foods that she just can not have. A typical conversation goes something like this:
What are you eating?
I like-a toast.
Yes, but you can't have it, right?
No toast for Gracie and Daddy - just Mommy and Rita
Right. Good girl!

Tom continues to do the Atkins diet so that Grace has a partner of sorts to help her with the diet. Grace identifies strongly that Daddy is also not eating the foods that she wants/likes. To some degree it does seem to help.

We started taking Grace back out to restaurants. We have found chicken wings to be a good eating out meal. Grace gets about 4 wings. We bring her heavy cream and oil or give it to her before we go. Before the diet, we ate out a lot and the kids really enjoyed it. It became a very social thing. I know that Gracie missed going out when the diet started but she could not handle seeing foods she loves go by and not want them. We found the nearby 'Wings To Go' to be great. Most of the people there are eating wings - just like her. She gets to go out to eat and people watch as well! Oh, one of the other great things about Wings To Go is the hand wipes in little pouches (wet-naps) - Grace just loves those. Every visit her little pockets (or my purse) get filled with these wipes! Grace likes to keep them folded up and use them as little squares.

When Gracie first started on the diet, she was begging people for food. The begging seems to have stopped. She is learning to handle being around people eating things that she can not eat. We tell her that this diet is to help her not have seizures - just like her medicines. She is aware enough to know that she does not like seizures and going to the hospital. Some things are yucky but they keep the seizures away. It helps that she will have this conversation with us - a few months ago she would not talk about seizures.

For all of the progress we made, we still struggle with eating days and not-eating days. Grace still has her ravenous days and days she is not at all interested in eating. She has also started swatting at people who try to give her the heavy cream and oil - more the heavy cream than the oil. We have warned her that if she swats at her teachers from school, there will be a consequence - we will take away her Barney movies. Somewhere Grace got the idea that if she makes it rough enough on us, we will not make her take what she doesn't want. I'm not sure where she got this idea because we haven't given her a free pass for bad behaviour that I can recall. We just keep working with her - and try to remember that we are the adults :-)

Sunday, March 22, 2009

I haven't updated in a while. I was emotionally drained after Grace came out of the hospital this go-round and then I got sick on top of that.

Grace is doing fine. She put on some weight - she is now tipping the scales at about 26 1/2 pounds! We attribute her weight gain to her voracious appetite when she came out of ICU. After not being allowed to eat for days, she wanted to eat and eat and eat! She has tapered back down to normal size meals but she is maintaining the bit of weight she was able to put on. She still weights less than when she started the diet - but her weight is now going in the right direction!

We had Rita's Family Day over this past weekend. March 21, 2004 was the day Rita was placed into our arms. We had to alter our traditional Family Day celebration a bit this year. We would normally head to Chinatown and have some dim sum and spend some time walking around and shopping. However, we have no idea how to work out the ketogenic diet exchanges for dim sum and we don't like to torture Grace with things she loves and can not eat. So we had to re-work things a bit this year. Rita decided that she wanted to have pizza for dinner and have dinner at Aunt Helen's house. Fortunately, Aunt Helen and family were agreeable to the new plan. We went to a park near Aunt Helen's house and played with the new kites and balls she bought for the girls. We then headed back to her house for pizza and chicken wings (Grace's new favorite food).

We need to fit in Grace's Family Day celebration. Her Family Day is December 12th but she was in the hospital for hers. We were going to celebrate them together but Rita wanted her day to herself. I think that was just sharing a bit too much for Rita. We will pick a day and celebrate for Grace!

Thanks for all of the love and support and prayers.
Marie, Tom, Rita and Gracie

P.S. I get corrected now whenever I call Grace, 'Grace'. She tells me that her name is 'Gracie!' It's a good thing she can't read or I would really be scolded - LOL

Saturday, March 14, 2009

Home Sweet Home

Grace came home Wednesday night. The decision was made Wednesday afternoon and we were home within a few hours. I think everyone is happy to be home.

Grace has lots of healing to do - internally in her lungs and from all of the IV's, central lines and assorted other holes! However, her spirit is fully restored and she is our happy, funny little girl returned to us. The sweet sound of her giggles is a balm to our spirits.

Grace seems to have put on a bit of weight since this illness started. She was not allowed to eat for a few days while she was in the ICU. Since she has been cleared for whole foods, she is ravenous! We figure that as long as we keep the ratios the same, she can eat as many calories as she wants. And she has been. It is really runny to watch her eat two breakfasts and two lunches and so on! The upside is that she is now at 26 pounds! We were so worried that after her days in ICU should would be about 23 pounds. We never hit that low. She was so full of fluids from all of the fluid they pushed into her that she didn't show losing too much weight. As the excess fluid has come off, she is eating like mad so she is putting on some weight. The ketogenic nurse coordeinator cautioned Tom not to let her eat too many extra meals - she might put on too much weight! I thought we wanted her to do that - well at least Tom and I want her to do that!!

Rita is now pushing for her share of attention. She has been great through all of this. This was Grace's third hospitalization in four months. Rita has been very understanding and patient. She is in kindergarten and her school events are important to her. We missed Dr. Seuss' birthday party. I forgot to pack her musical toy for her sharing day. She is behind on her homework. Fortunately, her teachers have been wonderful. When I commended Rita on her patience and understanding, she told me that she has been understanding for a very long time now. She is far wiser about some things than a five year old should have to be.

Before Grace started this diet, we went out to eat a lot. It just seemed so much easier with both of us working. We know that restaurants are too hard for Grace. The most we have done that was is take-out or eat at Aunt Helen's or Mom-Mom's house - we can count on some degree of control there. Anyhow, Rita loves going out to eat and this is something she would miss so we promised her that one day a week either Tom or I would take her out to eat. Rita said she wanted it to be Wednesday nights for dinner.

This week, Rita would not eat dinner for my sister because she kept saying that I was coming to take her out to dinner. It took a lot to get her to eat at home! We had our dinner out last night (Friday). It was our 16th wedding anniversary and I took Rita our for soup (and french fries) while Tom took Gracie out for a new Barney movie!!

Thanks for the support and the prayers!!

Wednesday, March 11, 2009

Doing Much Better

Well, Grace is improving each day. She is an amazing child. She got settled into her new room on the Neurology floor yesterday and it did not take her long before she was asking to go to the playroom and to paint! She remembered diong that when she was there in January to start the diet. She is on contact precautions because of the pneumonia so she is not allowed in the playroom. However, she is allowed out of her room in 'her wagon'. Last night, the nurse rounded up a wagon for her and put the contact precautions signs on it. Tom has permission to take her around the hospital so long as she does not touch anything - open hallways are alright.

Grace is still on IV antibiotics and she is still getting IV fluids from time to time. It looks like she may be discharged if she can go without needing IV fluids for the rest of the day and tonight. She is very weak and still congested but she is more alert and sleeping less. She is talking a bit more - not when the doctors are present - but talking more nonetheless!

This is the ketogenic diet initiation week at CHOP for another set of families. Tom was asked to talk to the families this afternoon about our experiences with the diet. I'm sure that will be interesting!

I think Grace is ready to get home. She has been talking about Rita lots and lots. She has not seen Rita since Saturday. She is also talking about her friends and teachers at school. According to Tom, while being pulled in the wagon last night, she told him that one of her teachers is a 'slow poke' and someone else was a 'bumpy-head'. As the fog of her illness lifts, she is thinking about the people who are special to her - her sister, her teachers and her friends!

Tuesday, March 10, 2009

Coming out of ICU

Well, Grace is doing much better and is getting sprung from ICU this morning. Yesterday, they got her off of the dopamine and her blood pressure held steady. Last night, they got her off of the oxygen and her levels held fairly steady. She is still fighting the pneumonia so her oxygen levels are a bit lower than normal - but acceptable. They just removed her central line - the last barrier to coming out of ICU.

The diet has been a blessing and a curse. She has remained seizure free through the worst of this. She did have a few small seizures at the onset of the illness. However, given her history, everyone expected the seizures to come. The medicines to stop the seizures were at the ready should they be needed. Thankfully, this was not needed. The drawback from the diet has been her nutrition. When she was on the dopamine, she was not allowed to eat anything. Normally, the IV fluids would have dextrose in them and that would surfice. With the diet, Grace needs to have plain saline - no dextrose. With no fat coming in, she was buring whatever fat and muscle her body could find within. And she was hungry. Thankfully, she was allowed to have clear liquids last night and this morning she was allowed to have some real food for breakfast. It was with renewed appreciation that we measured out the heavy cream, oil and food this morning!

We are thankful for the doctor Friday night at St. Mary who had the sense that things were not quite right and had Grace transferred to CHOP. Then once she was admitted at CHOP, that doctor felt that things were heading downhill quickly and started some treatments immediately that really prevented this from getting worse. Several of the doctors in the ICU said that Grace would have been much worse off if we had waited to get her in. Our sweet baby has a guardian angel or two looking out for her!

Thank you for all of the prayers and good wishes. Grace bounced back quicker than they expected. We were being prepared for several days in the ICU before they expected her to stabilize on her own.

Sunday, March 08, 2009

Still in the hospital

Well Grace is still at CHOP. She has a confirmed viral pneumonia with a possible secondary bacterial infection. (Boy, I have been spending way too much time around medical professionals.) They started giving her some high-powered antibiotics while we await the results from the blood cultures. This will take a few days so rather than waiting to treat, they are asuming that she has the bacterial infection and treating it.

Grace has been on oxygen since Friday night. She has been having a lot of trouble keeping her blood pressure up and keeping her heart rate down. As a result, she was moved to the PICU unit Saturday night. She is being given Dopamine to help with the blood pressure. This required a higher level on monitoring than what was available on the regular wards. Prior to starting this medicine, they gave Grace lots of fluids - apparently a bit too much for her veins and her veins started to leak out some of the fluid into surrounding tissue.

The doctors decided that Grace needed a central line so she had one inserted today into her leg. This gives direct access to her arteries and gives her veins a small break. They gave her some medicine to sedate her for running the central line and also something to help her forget and block out the event. - I didn't know that was even possible. I always thought that was something just for James Bond.

As a result of everything they did for Grace, things seem to have stabalized for her. Her blood pressure is just a hare short of normal and her heart rate has fully come into the normal range. Her oxygen concentration is holding steady at 100%. This is all great news. Grace is not doing this on her own but with a lot of help from medicines and oxygen. However, we are all thrilled to see things stabalize - regardless of who or what is doing it right now! Grace will likely be here for a few days while they work to getting Grace to maintain this stabilization on her own.

Grace was very out of it on Saturday. The combination of high fever and low oxygen levels seemed to just wipe her out. As she has gained stability, she is able to concentrate more when she is awake. She has started to fight back when they try to do things to her - which everyone is happy to see. I hope they are still happy to see that when she is allowed to eat - that is usually a huge fight!

The most amazing this is that on Friday night when Tom and I were trying to decide what to do, Tom asked Grace it she wanted to go to the hospital. She actually said yes. We new at that point that she was really sick and knew it herself! We keep telling the doctors that Grace participated in this treatment decision!

Thank you to everyone who has been praying for Grace. I believe in the power of prayer so please know that it is greatly appreciated!


Saturday, March 07, 2009

Update on Grace

Just a quick update on the last few days. Grace is sick. She has had a few seizures over the last few days and she is running very high fevers. Friday night Grace spiked a fever of 104.5 while being o both Tylenol and Motrin. We took her to the Emergency Room. After spending the night in the ER, they transferred her to CHOP with a possible pneumonia (chest x-ray did not show it but symptoms indicated it), high fever and low oxygen saturation.

Tom went with Grace down to CHOP and I came home with Rita to take a nap and to pack up some things for the hospital - like the scale and some other things we need to support the diet. We did not think about this last night. For certain types of medicines, we are supposed to counter-balance the carb content with a fat. For instance, children's motrin has carbs for flavor. Grace is supposed to have a fat with that so that she stays in ketosis. We didn't bring any fats with us so she had to go all night without. The local hospital is not prepared to support kids on the diet like that. I'm not even sure that CHOP is prepared that way.

Rita is a trooper. We were going to drop her off at Tom's parents house last night but people are sick there and we didn't want any new germs coming home. The same is true for most people's homes that we would normally ask Rita to go. So, in the interest of containing the germs we currently have, Rita is trudging along from hospital to hospital. Thankfully, she looks at this as an adventure - and more playroom to explore. The promise of a McDonalds in the lobby holds great attraction as well !!

Well, I need to run. Rita is packing up some toys and coloring books for Grace as I type. The longer I type the bigger the pile grows.


Tuesday, March 03, 2009

The streak resets

Well I may have tempted the fates a bit too much with my last post. Today Grace had a seizure and went to visit her friends at St. Mary. She also got a ride courtesy of our local ambulance company.
As I stopped at WaWa to pick up our heavy cream, I ran into the paramedic who treated Grace this morning. I have not seen him since he was at our house on Christmas day - 67 days ago. He stopped me to check how Grace was doing. He had some questions about the diet as well.
Grace caught whatever virus had Rita under the weather for the last five days. Rita was running a high fever and just generally felt miserable. We tried to keep the kids apart to keep the germs from spreading but they spread anyhow.
The good news is that this was a short seizure. It responded to the Diastat - an emergency rescue medicine to stop the seizures. In the past, Grace has been resistant to the Diastat and has had long seizures. In that regard, today was a victory for Grace and the diet. This was one of my measures of success when we first started this diet. We wanted the length/duration of Grace's seizures to decrease. We have been repeatedly told to expect break-through seizures.
Here is a photo of the girls from a few weeks ago. I think they look cute together. This was on Tom's camera phone - along with photos of feet from the ER today! I decided to include this one - no one wants to see feet!

Sunday, March 01, 2009

March 1st

It is hard to believe that we are at a new month already. Even harder to believe is that we made it through all of January and all of February with no Emergency Room visits!

Part of our discharge routine with the staff at St. Mary's ER would be a prediction of when we see each other next. Kind of like friends parting and deciding when we would meet up next. Of course, we were often invited to just come in to say hello or to perhaps just meet up in the grocery store. Generally, we would pick a date about a month out and say, see you then. I guess we were all resigned to the fact that Grace was a frequent visitor. As we left the ER on our last trip - Christmas Day, they joked, that they would see us in January. I told them that we were starting the diet in January so not to expect to see us until February.

Well February is over. Grace is still fighting with us about eating. But, we have not met up with our friends at St. Mary Medical Center in a while now! In December, making it one whole month seizure-free seemed liked a victory. Today is a reminder that this diet is giving Grace more seizure control than we thought possible as well as other unexpected little victories.

Tom and I have discussed sending a 'Thinking of you' card to our friends at the ER. Everyone there is great and genuinely seems to care about Gracie. They get to see her amazing transitions better than anyone else. A small little girl coming in on a stretcher just after a seizure or sometimes still seizing. They care and tend to her for few hours and usually before she leaves she is jumping on the bed! Grace often leaves the ER blowing kisses to everyone. I imagine they wonder what is going on.

I am starting to think that some of the fight Grace gives us is a matter of principle. Sometimes she seems to fight us right up until we get the sryinge up to her mouth at which point she stops fighting and takes what is given. When I look back, she did this a lot with medication as well. It is as if she feels an obligation to fight us - as if heart really is not in it. Then, of course, there are the other days when her heart is in it and the fight doesn't just stop with getting the syringe in to her mouth. I guess this is part of being a normal three-year-old.

I haven't had any photos to include lately. I let the kids use the camera to take some pictures and now I can't find it! It's time for me to check the purses and bags the kids play with. I'm sure it will show up soon. In the meantime, no photos for today!

A big thank you to all of the folks offering encouragement to us on this journey!
Marie, Tom, Rita and Grace