Tuesday, December 08, 2009

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!

Monday, November 30, 2009

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.

Thursday, November 19, 2009

All's Well That Ends Well









Just as I though things were starting to settle back down into some semblance of normal, more chaos hit! I was finishing up lunch when my cell phone rang. It was Rita's teacher calling to tell me that her school was being evacuated and someone needed to come pick her up right away. Apparently, there was a gas leak in the vacant building next door. I called Tom to see what he was up to and to see if he was able to pick Rita up. Tom asked if I had the message from day care about Gracie; she was having a low sugar episode and they were worried she was sick. I said I would pick up Gracie after I got Rita.

I didn't think about the fact that the entire area of Rita's school would be bedlam and streets would be shut down! They had evacuated the students to the gymnasium of the high school across the street - which was also being evacuated as best I could tell. There were emergency workers and vehicles everywhere - police, fire and ambulances. Despite the chaos, they were very well organized and were keeping very close track of every student. Rita was brought out and the minute she saw me she burst into tears. I guess she held it together and then just lost it. It took a little while to convince her that this was all just safety precautions and that everything would be alright. She was very worried about all of the ambulances sitting around. Rita was also upset that she had to leave her back pack in her classroom. At six years old, it was just a bit too much for her.

Rita and I got settled and managed to get out of the area. We got to Gracie's day care just at the end of nap time. We gathered up her things and picked her up off her nap mat to carry out. I could see just how nervous they all were about Gracie - the medicine to stop a seizure and a pair of rubber gloves were right on her mat and the teacher was laying down right next to her. Day care gets an A+ for preparedness! Gracie seemed to have several things going on - she wasn't eating and appeared to have a low sugar episode - hence the shakiness. They gave her a few cc's of apple juice and then got her to eat some peanut butter and some turkey. This seemed to have solve that problem. She appeared warm to them so they took her temp. She was just at the 100 degree mark. Somewhere in the midst of all of this (and Gracie's version of the story varies with each retelling), she was either pushed or hit. She had a black eye and a cut on her eye. In addition, she has a chesty sounding cough.

I got both kids home and we had a nice snuggle in front of the TV for a bit. Rita seemed to have calmed down and was fine and Gracie woke up the rest of the way and wanted to eat! We met Tom and picked up Rita's new glasses (see the photos!) and then we took Grace to see the doctor. Notice that Gracie is also now wearing glasses; albiet sunglasses. She wants to be just like Rita!

The doctor was satisified that Gracie's lungs remain clear. She was concered that the congestion had gotten into her lungs but that does not seem to be the case - just a sniffle and a cough. She had no elevated temp or fevers in the doctors office. Gracie had eaten - pigged out actually - so there was no point in testing her blood sugars. Basically, Gracie is fine. She was in full imp mode in the doctor's office - so much so the doctor laughed and said a child with that much energy was not feeling too sick!

As the saying goes, all's well that end well!

Wednesday, November 11, 2009

Interesting Flu Study

One interesting note about Gracie's recent hospitalization to share. While we were in the ER, someone came in to ask if we wanted to participate in a study. They are tracking the level of a certain protein in the blood stream and following up on the patient outcome to see if the level of this protein is a marker for the severity of the resultant flu and the eventual patient outcome. It required exactly one drop of Gracie's blood. They were able to take that drop of blood from the blood in the lines when they took Gracie's blood for other blood work - basically blood that had no other use and was about to be disposed of.

The protein in question is the Lactate protein. The theory is that the higher this level is in the blood stream the more severe the flu will be. If I remember correctly, it is something about the body's reaction to the flu virus, produces this protein. Thus the more severe the flu; the more of this protein that will be produced. It sounds like an interesting theory.

CHOP is the regional children's hospital handling the majority of the flu cases during this pandemic. They are seeing many, many children a day with the flu. I was impressed that someone was ready with this study. This may be one very good thing that comes out of all the negatives of this flu. We were happy to be able to participate. This may actually be something that helps Grace out in a few years if she gets the flu again. It would be really handy to know at the onset how severe things are going to get.

Thanks for checking back in on us!

Tuesday, November 10, 2009

Gracie is home!

It is with great pleasure that I report we are all sleeping under the same roof tonight! Gracie was discharged late this afternoon.

Gracie was definatively diagnosed with the H1N1 virus. The doctors wanted to make sure that there was a cause related to her increased seizure activity and the high fevers assocaited with the H1N1 virus are clearly the cause. Her lungs remain clear so there is no respiratory factor for Grace. In my mind this was one of the most worrisome symptoms as this was the factor cited with so many of the childhood deaths assocatied with this flu. Thankfully, Gracie was not hit with this complication.

Gracie is generally miserable and cranky. I would expect this from any sick three-year old. She is getting headaches from the flu and an upset stomach from the TamiFlu and the anti-seizure sedative. It is not plesant for her - but not life threatening either. She can be comforted and wants to snuggle up and be carried about. It is nice to be able to do something to ease her.

Gracie was not drinking enough and she would not be released until she was taking sufficient fluids on her own. Last night, I was in the kitchen area and noticed the infant bottles. I took one in to her and filled it with her 'juice' (keto version) and she lit up. She quickly sucked down a full bottle - all two ounces of it! That is how we got her to drink enough fluid on her own. She went to bed tonight with her little bottle and a small smile.

To complicate matters, Grace was discharged while I was off with Rita to her eye doctor appointment. Rita started having problems with blurry vision from time to time. She got checked out at the pediatrician and then recommended for follow-up with the eye doctor. Well, Rita is getting glasses. She was very pleased about that. Anyhow, while she was getting her exam done and picking out her new frames, Tom was calling to have us come pick he and Gracie up at the hospital. Rita and I finished up and raced down to get them. Gracie needed some prescriptions filled but we missed the pharmacy at the hospital - they closed about 15 minutes before we all arrived. We took her prescriptions to the local pharmacy but they don't have any TamiFlu - let alone at the dose she needs. We managed with the other scripts. So we need to run back down to the hospital in the morning to get the TamiFlu prescription filled. She needs the next dose by 10:00 AM. The drug store said flu medicines are very hard to get and to keep stocked. Fortunately, we can get them at CHOP.

Thanks for checking in on us!

Monday, November 09, 2009

Hangin' with our friends at CHOP

Gracie is still here at CHOP. Once they got her fever down, it seems to be staying down. She is on TamiFlu for the flu; IV antibiotics for the bacterial infection; and a sedative to prevent additional seizures. Basically, she is under control. She is very tired and not very interested in food or drink. She is on IV fluids again tonight since she is not drinking enough.

Grace remembered the child life specialists here and perked up this afternoon to paint. She was so pleased to get to paint. It was great to see her wake up and play. The IV is in her right hand (and she is right-handed) so she had to paint with her left hand. Despite that, she thoroughly enjoyed painting!

This is the ketogenic diet initiation week at CHOP. It is ironic because the last time Gracie was inpatient, it was initiation week as well. Last time, Tom spoke to the other parents. If we stay, he may put in another cameo :-)

The Flu has struck

Well, Gracie's illness turns out to be the flu. We were giving her Motrin and Tylenol every few hours - the maximum allowed doses. She was still running a fever - up and down. With one of the spikes today, it triggered another seizure. We did not call 911 and rush her to the hospital as we were not sure what they would do for her. We called her pediatrician and left a message. When she called back the message was, these symptoms sound like the flu that is going around. Grace needs to be at CHOP. Are you comfortable taking her or shall we send an ambulance? (We drove on our own - no need to wait for an ambulance - I am faster :-) )

We expected very long lines at CHOP but there were very few people in the ER waiting room when we got there. Grace was triaged rather quickly and then seen rather quickly as well. It was quickly determined that she had the flu. The big question was how her fever was so high when she was on full doses of Tylenol and Motrin, back to back. It turns out that she may have a secondary bacterial infection. We were given the option to take her home after a dose of IV antibiotics or to leave her there for observation and monitoring. We chose to have her stay there at least for the night. For me, this was too much of a reminder of what we went through in March with the pneumonia that turned into septic shock - we don't need a repeat of that. Grace got a room in 7-West - the Neurology floor. It was a good thing because the first thing they did was order the sedative that will help prevent additional seizures while she battles these fevers.

Grace is in good hands. We hope that she bounces back quickly and does not experience any additional seizures.

Sunday, November 08, 2009

"Where Rita?"

That was the sweetest thing I heard for a long time. It set my mind at ease in a huge way.

Gracie had a seizure Friday night. It started out as a tonic-clonic (full-body seizure) and then morphed into an absence seizure. It was a relatively short seizure by Gracie's standards - only about 12 minutes - but it was not her normal seizure. Her breathing was shallow and she seemed to be fighting to come out of the seizure. We had already called for an ambulance and they were on their way when she came out of the seizure. Grace was out of the seizure enough to try to pull her arms away as they tried to check her vitals and run an IV. Typically, when she is that alert, she will also tell them NO as she swats at them. I usually take that as my sign that she will be alright - when she is alert enough to fight.

The folks at the ER checked her out and tried several times to get her to respond but she could not get any words out - she could only grunt. It looked like she was trying to talk but nothing was coming out for her. Several times they tried to rouse her and get her to respond but she was not very responsive. I must admit that I was starting to get a bit worried. After we were in the ER for about 2 hours, I picked her up so we could change her and change the bed. She was fairly limp. And then out of nowhere, she perked up, picked up her head, looked at me and then looked at Tom and said, 'Where Rita?'. Grace was going to be OK. Rita was asleep in the chair curled up in a pile of coats and jackets.

We stayed a bit longer in the ER to make sure that Grace was back to normal, or as they call it, baseline. In no time at all was Grace up and asking for something to drink and something to eat. We were all back home shortly thereafter.

Grace has no fever Friday night. As sometimes happens, the seizure is a warning that the illness is coming. By Saturday morning, Grace was running a fever and was congested. She was tired, cranky and miserable but she was going to be alright! We will watch this cold to make sure it doesn't get much worse. We have been pumping her full of Tylenol and Motrin to keep the fevers from spiking. Fortunately, it seems to be a cold that has invaded our house and not the flu - something else we are quite grateful about!!

Thursday, November 05, 2009

Halloween









I am a bit behind on putting out a Halloween update. The girls had Halloween dress-up parties at their respective schools, dance classes and, of course, our neighborhood trick-or-treating. We were very nervous about how Halloween and the ketogenic diet would mix. We debated even letting Grace participate in these activites where carbohydrates play a central role. In the end, we worked out that she could particpate but that she would need to get rid of the candy and treats. For the school party and the dance class party, Gracie happily gave her bags of treats to Rita and then went to the dollar store and picked out some non-food treats there. This worked great and she was very pleased.

Halloween night did not work as well. I think Grace really felt she had earned the treats that night. Grace tends to be afraid of a lot of things and people sitting on their doorsteps dressed up in scary costumes are high on her list of things to avoid. However, she mustered up her courage and followed Rita and some friends up to even the scary houses. She every so sweetly held out her big orange pumpkin and said, 'Trick-or-treat'. She even remembered to say thank you for the treats. She did not want to part with them when we got home. We took her to the dollar store immediately after arriving home and she was not interested. She just wanted her candy. Her request seemed so reasonable but we had to say no. This was one of the times when the diet tested our resolve, as parents, to keep her on it.

We had a lovely surprise from one very considerate neighbor. When we got to their house, they had a special treat for Gracie - a bag of cashews. Gracie's favorite nut. That was one treat that she did not have to give away or throw out. Thank you Chris, Lew and Angela!!

Tuesday, October 27, 2009

Ballet Night





Tuesdays are Gracie's dance night. Her class is tap and ballet but all she talks about is ballet. Gracie loves ballet. She carries her ballet slippers in her special Winni-The-Pooh back pack. She calls it, 'My ballet'. We have to keep reminding her that ballet slippers are for the dance studio only and not everyday shoes! Gracie waited a long time to take this dance class. She has wanted to follow in Rita's footsteps from the first time she became aware that Rita was even taking dance classes.

Gracie practices her steps between classes. Her routine consists of taking one foot and pointing it to the front, side and back and then bringing her feet back together and repeating with the other foot. At first she was not getting the motions and the names of the directions to work in synch - for example, she would gracefully point her foot out in front of her little body and declare the motion to be 'back'. After a few weeks, she is now getting the motion and the name of the motion to match more times than not. Regardless, at the end of her little routine, she sweeps into a grand bow and expects applause! Rita is usually her biggest fan and her only critic. Rita can correct her and help her to align the motions and names for the motions; Tom get scolded if he tries to help!

Gracie was so into this dance class and the teacher has a rule that she will only take children who are potty-trained. This was a big motivation for Grace to work on that. We were having some issues with potty-training even up until the summer. However, when she was told that she could not dance if she was having accidents all day, she quickly found some much needed control. There is still the occasional accident but they are now rare.

Tonight Grace had a Halloween party at her dance class. She was able to trade her candy in for treats at the dollar store right after her party. That was a success. Hopefully the same play will work for her on Friday with a party at day care and on Saturday when she goes trick-or-treating!
The pictures are from Ballet night and just an extra that I love of her enjoying a pudding treat.

Sunday, October 25, 2009

We're still here....











Sorry for the delay in posting. Things got a bit busy here and the updates were missed. Everything in fine. Grace remains seizure-free since the incident in mid-September. WOOHOO!

Gracie continues with the diet at the 2:1 ratio. We have found this to be manageable. Peanut butter, cashews, peanuts, and canola oil are lifesavers. We even mixed in some beef jerky. Gracie loves eating some of the fresh fruits and vegetables readily available. We have found that she loves seafood - and dipping it in butter - lots of butter. This is a great vehicle to get her to eat the butter. She usually requires a massive clean-up effort afterwards but it is so great to see her eat with such gusto. Gracie is just about back to the weight she started at when she started this diet. She is three inches taller but she no longer looks so gaunt.

We took a trip to Florida the end of September, beginning of October. We had a timeshare week that was a use it or lose it deal so we decided to use it! The girls were thrilled at another chance to see Shamu and visit Sea World. We did the dolphin spotlight tour. It was great. I have added some photos from that. Our kids are funny - they go to Orlando for SeaWorld and sometimes we see Disney.

I'll try to get more regular with the postings now!

Thanks for checking in with us!
Marie, Tom, Rita and Gracie

Thursday, September 17, 2009

The morning after

Sorry for no details on the September 16 event. Here's how it went; It was a normal night in the Kilgore household, we ate out (Wawa hot dogs for the girls and nada for dear old Dad(he would binge eat later)). We came home to do Rita's homework and finished most of it. For some reason she wanted to save some for Thursday. The girls decided they wanted to get a bath before we read a book and then watched a little TV before bedtime. The water was run (a little warm apparently), the girls tested it an Gracie said it was hot. I ran the cold water until it met the Rita's approval. I SHOULD HAVE CONSULTED THE TEMPERATURE DUCK!! The girls were playing as in the tub as usual as I gathered their clothes. Nothing seemed amiss. When I asked if they were ready to have their hair done and get out, I was greeted with shower curtain closing and come back later we're playing.

As I began the cleanup of the wreckage from the living room play session I heard what sounded like one of the kids falling out of the tub. As I got to the bathroom Rita was holding Grace out of the water. She informed me that Gracie stood up to get something and started seizing. I took her out placed her on the floor and retrieved the Diastat. It took about 3.5 to 4 minutes for the Diastat to work. In the meantime I called 911 just in case. When the ambulance arrived, the recommended we take the trip to St. Marys Hospital (our old stomping grounds from previous seizures).

When we arrived at the hospital it was like we step into the set of Cheers when the cries of Gracie rang out. She was back to herself at this point but postictal(?) not sure of the spelling. We sat for the normal 2 hours talked to the nurses, caught up on the last 6 months with the doctor and nurses and were sent on our merry way.

It is now 6:30 am and the girls are still sleeping. I don't think I will be rushing to wake them this morning.

The streak starts at 1.

Wednesday, September 16, 2009

We jinxed ourselves

The streak is over.

Saturday, September 12, 2009

The Circle of Life

We started out the day with a call in the wee hours of the morning informing us that a beloved aunt has succumb to cancer. If all continues as it is going, we will end the day welcoming a new grand-neice and the start of a new generation to our family.

I am leaving tomorrow evening for Scotland to attend my aunt's funeral. I am trying to prepare the girls for the fact that I will be gone for a few days. Rita is much easier to talk to. Gracie just tells me not to leave her! She grabs on to my arm and tells me with her pouty lips that I am not going without her. I am already wondering what I will miss while I am gone.

Grace started in a new room at day care this week. This is officially pre-school. Within a week she has gone from only counting 1 to 3 to now counting 1 to 10 - she usually gets all of the numbers; sometimes she skips 6 or 7. I wonder how in one week she went from only counting 1 - 2 - 3 to counting all the way to 10.

Grace has had trouble with her colors for a while now. She can tell you which items match and arrange objects by colors quite accurately but she can not tell you the color itself. This is one of the items that has the doctor saying that she may need cognative therapy. We will take her to the Intermediate Unit again in October to be re-evaluated. This morning she blew me away - we were playing with a bunch of little rubber bracelets; matching like colors. She correctly identified red, green, blue and yellow. She didn't get orange right, she called it green but she knew that the orange did not match the real green. Where did this come from? Just two weeks ago, she was getting frustrated trying to name the colors when we played a matching game with the pieces from the Trouble game. These are mostly the same colors and she got them all right today. This child amazes me at times!

Grace also started her dance class this week - tap and ballet in one class. She walked out of the class just beaming. This is something she really wanted to do and she was so pleased to be able to go to dance class. She had gymnastics class this morning. She liked it but not quite as much as her dream dance class!

Grace still fights this diet from time to time and at varying degrees. The battle to keep her eating and to keep her weight on is so worth it. Weeks like this just affirm that we are winning the war over epilepsy!

Sunday, September 06, 2009

We quietly marked yesterday as six months since Gracie's last seizure. For a long time I didn't think we would ever see that milestone. This diet has changed so much for all of us; but especially Gracie.

Gracie is so very excited to be starting dance class on Tuesday. She had started a Daddy and me class last winter but with all of the illnesses, we needed to pull her out of it. This is a full class and she will learn tap and ballet. She beams whenever we talk about it. She dances whenever she hears music.

In addition to dance class, Gracie will also get to start back to Gymnastics. She does this because Rita does gymnastics I think more than because she really wants to do the gymnastics. She did a few parent assisted classes last year but I personally felt she wasn't very in to it. This is also something that we stopped for her last year when her body was just too weak to keep up with it. There is no longer a question of weakness - she is fully able to participate. Actually, this may give Tom a break as the girls were both just climbing all over him - taking turns tackling Daddy! Perhaps, the class will help her expend some of that energy!!

Rita finished her first week of school this past week. She is in first grade this year. I thought she would be a bit apprehensive on her first day. Not at all, she hopped right on the bus and just waved goodbye. She was quite excited to see her school friends again.

Saturday, August 22, 2009

I did it.

We have been hearing Gracie saying this more and more of late. She is mastering skills and doing things that give her great personal satisfaction. She is so proud of herself when she can do things for herself.

One of the items that is a milestone for 36 months of age that Grace has consistently missed is dressing herself. We have long debated with her pediatrician and the neurology team if this is an issue or not. We could not decide if this is something Grace could not do or just chose not to do. I think we can chalk this up to one she chose not to do. She dressed herself this morning and again this afternoon after her bath. She is so proud of herself when she accomplishes this. She then runs around the house showing and telling everyone. Fortunately Rita is the gracious big sister and gives her the praise that she so craves! When Rita tells her she did a good job, it matters more than anything!

I think I mentioned this, but Grace loves tattoos! One of the rewards we used for her when she started the diet was new tattoos for finishing a meal. Well tonight, she found a tattoo and managed to get a wet rag and she put it on all by herself!! It was very funny. She just beamed with pride as she announced, I did it! Self application of temporary tattoos is not on the milestone chart but for Grace this was more important than anything else on the chart!!

Thanks for checking in on us.

Sunday, August 16, 2009

A Change of Diagnosis

We had a meeting with Grace's neurologist on Friday. I usually go in prepared with a list of questions. One of my questions was long term prognosis for Dravet's. What should we be expecting? Instead of grim, dire news, he said he thinks that Grace may have GEFS+ and not Dravet's. The big distinction is that Dravet's is characterized as a degenerative disorder while GEFS+ is not. Both disorders are related to the same genetic disorder - the SCN1A gene. When Grace was first diagnosed last year, she followed the typical path of a Dravet's patient. However, she has obtained some degree of control through the diet and she has not developed the characteristic myclonic jerks, her doctor feels that she most likely does not have Dravet's.

Grace did her typical not talking for the doctor or nurse practitioner this time either. She gets shy and coy when the doctor comes into the room. I swear she is flirting with him. It is hysterical! This time she didn't do her pattened move and put her elbow on his knee, with her hand under her chin and gaze up at him adoringly! That is really outrageous flirting when she does that! I swear she did not learn that from me - LOL.

The one downside of this visit is that they are recommending that Grace stay on the ketogenic diet for as long as her body can tolerate it. This means longer than the 3 years we initially thought when we signed on for it. They are pleased with her progress - well over 160 days seizure free and want to make the most of that. In the grand scheme of things, it's a small price to pay for a continued good outcome.

We reviewed what to look for when we take Grace back for our follow-up with the IU (Intermediate Unit) in October. The doctor and nurse practitioner feel that Grace can benefit from some speech therapy and some cognitive therapy. I will do my part and push for that. I really didn't push in April. Now I know better.

We also discussed potty training. Grace was almost completely potty trained before she got pneumonia for the first time this winter back in December. With two more hospitalizations and a stay in ICU after that, she is very much regressed in her potty training. I was concerned because she was catheterized and I worried that it damaged something. We were reassured that many children regress after a hospital stay and that this is normal. Given that she had three stays in a short period of time, this is understandable. CHOP does have a program to help children who are delayed with potty training; however Grace does not qualify for it. They don't think it is a problem until the child is 6 years old! Where Grace is at is perfectly normal. I love hearing that !

Grace also topped the scales at 30.2 pounds! This is great news. She is almost back to her January starting weight of 31 pounds. I will try to post photos soon of her filled out cheeks! The camera and charger got separated so I now have a uncharged camera that I have been carrying around - not very helpful!

Thanks for checking in.

Sunday, August 09, 2009

A Scare

We had a scare this past week with Grace. Day care called to report that she was broken out in a rash - very widespread. They were worried about chicken pox or some other virus. Tom picked her up and took her to the doctor that afternoon. It turned out to be a reaction to bug bites. Thank God.

Of course I was scared out of my wits. The last few times Grace got really sick, she caught whatever was going around. I waited with bated breath for Tom to call me and let me know the outcome. As I didn't hear from him and I didn't have any messages from him, my mind imagined the worst - she spiked a fever, went into seizure and was at the hospital. We have been warned that if she gets chicken pox, we should expect to spend about two weeks in the hospital until the fevers pass. I rationalized that Tom didn't call because he was too busy handling the situation. I started making arangements to be out of work for a few days. I was prioritizing what had to be done and who could handle it and figuring out what could wait. While I was busy with my planning, Tom and the girls were enjoying the newest Disney flick, G-Force at the movie theatre! Tom didn't think I needed to be told right away that Grace only had bug bites.

Grace is behind in some vaccinations but she did have her chicken pox vaccine - the first dose. She is scheduled to get the second dose within the year. When Tom first called the pediatricians office, they said that she is not fully covered with the vaccine until she gets the second dose. Of course, this news just fueled my paranoia. Since Grace's seizures are often triggered from the fever she spikes associated with vaccinations, we needed to slow down the schedule and at times halt them altogether for a while. We are almost caught back up!

Aside from a lot of bug bites on all of us, we are doing fine. Grace passed the 5 month mark from her last seizure. A long time ago someone promised Grace something 'special' if she could make it six months seizure-free. At the time, we all just kind of laughed and thought this would never be possible. I am beginning to entertain the possibility that she just may make it to that magical six month mark. Of course, Gracie does not realize that a promise was ever made. Tom and I like to tease the person who made the promise. In reality, this promise is a reminder that there is always hope - a hope that seemed impossible just one year ago.

Thanks for checking in!

Sunday, July 26, 2009

Planning for Independence

It has been four and a half months since Gracie had her last seizure. Tom and I are no longer on edge waiting and watching for the next one. We have graduated on to some small freedoms. We let Gracie be alone for small periods of time to play by herself. For the longest time, if Gracie was out of sight, I worried that she was having a seizure. This small freedom is a chance for her to foster some independence and a chance for us to trust that things are alright even if we are not watching her every minute. It helps that she likes to sing and talk to her toys as she plays. As long as the singing, talking and babbling continue, she is not having a seizure.

I guess it comes down to a balancing act of wanting to protect her but not be over-protective and to want her to grow up to become an independent person but to realize that she has limitations. As Gracie grows up and becomes more independent and in control of herself, I want to know that we have prepared her as best we can. One small thing that we do is introduce her to public transportation. There is a good possibility that Grace will not be able to get and maintain a driver's liscence. Her method of transportation will most likely not be to hop into a car and zip off to wherever. We are introducing her to public transportation so she will be aware of it; know how to use it and not to be afraid of it.

All this talk of independence...the reality of it is that Gracie is still our sweet little three year old who is a long way off from doing much on her own. But we have hope.

Sunday, July 19, 2009

Half a year in...


Gracie has now been following the ketogenic diet for just over six months. It has it's challenges but the benefits are definately outweighing the negatives. The biggest benefit is that we are well over the 4 month mark os being seizure-free. Grace just sat here and sang me a song she made up about her daycare friends. It was so amazing and so sweet. The longer she goes without seizures, the better her long-term prognosis is.

Gracie is getting more clever about trying to scam food off of people. Her most amazing ally is her sister. It's bad when Gracie begs for something and then Rita also starts asking if she can have a little bite of whatever it is she wants. Rita has a lot of empathy for Gracie. Rita often comments how great it will be when Gracie can be off of this diet. At times Rita actually feels bad for being able to have something the her sister can not eat. It is a reminder that Rita is on this journey with the rest of us.

Gracie has put on a little bit of weight. She hit 29 pounds on the scale the other day. She is still not close to he 31 pounds she weighed when the diet started in January. She continues to grow and many of the other side effects seem to be resolving. Her hair stopped falling out like it was. Her hir color is much more brown than black. The doctor commented on her hair color on our last visit. I hadn't noticed it much. However, I did really notice the brown color when she was with all of her 'Chinese friends' (her travel group).

We make the choice to stick to this diet over and over. There are times we are tempted to let Gracie slide off of this diet. That temptation gets quelled by the little things - seeing one of our local ambulances and not knowing the paramedics! For a while we were seeing them so often, we knew all of them. We have not seen our friends at the St. Mary Medical Center ER since March! There were times we were seeing them weekly. We keep up with the diet because in the long run, Grace is better off for it.

Wednesday, July 08, 2009

Wow - Changes







I just came across some old pictures. The picture of Grace is the white dress is from two summers ago at Gracie's Christening. I never thought she was chubby or had any baby fat. However, when I look back to two years ago - the change is dramatic to just how thin she is now. The top photo is of her today - her face and neck look so thin.

I also found a photo of all of the babies in Gracie's travel group - the traditional 'red couch' photo. It was great to see how these babies have grown and are thriving. Gracie is the second baby from the left. This was December 2006. There is an updated photo of the babies all sporting their lovely yellow dresses in the next post.


Marie

Tuesday, July 07, 2009

It's been a while...
















Sorry for the delay in posting..we just got busy with all kinds of good things! Rita finished kindergarten. We attended a travel group reunion with Gracie's travel group. We went to Florida for a short visit with our friend Shamu! We had breakfast with Alice in Wonderland and Mary Poppins. We are starting to adjust back to 'normal'. Rita is going back to Just Children, the day care center where she was prior to kindergarten. It is great to have both girls at the same place again - only one drop off and pick up!

Grace remains seizure-free. We passed the four month mark while we were on vacation. WooHoo!! The changes in Grace are evident. She is definately speaking more and singing and dancing more! It does our hearts good to see a happy and otherwise healthy three year old emerge from the fog she has been living under. Grace is definately more sneaky these days though!! Grace sneaks snacks - actually crumbs of snacks - that she should not be eating. She is begging for food again but this time she is asking only for 'a baby one'. She tried to reason with us to get more food. One of her favorites is when we give her a choice. She will select food A and when it is gone she changes her mind. At that point she says, "I no want xxx." and then she goes for the second food. She gets an A+ for effort with trying to get more carbs!

Grace seems to have tired of peanut butter just a bit. We were at the point that we were carrying a jar of peanut butter and a spoon everywhere we went. While we were on vacation, she started eating peanuts and cashews. She has developed a real taste for the cashews. I handed her a small bagt this evening and she cradled and snuggled it like it was a baby! Even though Grace's tastes go in cycles, I am happy to be able to add new foods to the repotoire.

Thanks for checking in on us. I will try to keep the updates a bit more current!

Thursday, June 18, 2009

Grace continues with her seizure free streak. I think I may actually be getting complaicent about the seizures. I have caught us going out without her Diastat and 'emergency bag'. There was a time I didn't even go for a walk down to he corner without the emergency bag. We have been running out for errands or short trips and I get home to realize that we left without the bag. By the grace of God, we have been ok. We need to work on keeping our guard up. It is wonderful to have moved to this phase though! I appreciate that this is an upgrade of problems.

Grace is still haveing eating days and non-eating days. There are days she is ravenous and want to eat everything in site. And then there are days that we can barely to get her to eat. With her new meal plan, Grace gets some additionalo carbs. This has helped her a bit. She now gets a single cracker for a meal. She has developed a love of Ritz crackers! We heap a big gob of butter on the cracker and she usually eats it. We had one or two times when she even went so far as to have the spoonful of butter after the cracker. This is great as it means less oil in the syringe after her meal!

Friday is Rita's last day of kindergarten. Wow! I am amazed when I think about everything she learned this past year. She can read. She can count change and use coins. She is learning Spanish and tries to teach us as well. Her imagination is abundant! I grew up at a time when kindergarten was optional! I learned what she did this year when I was in first grade. Kids these days are so smart. She is one of 25 children in her class and they all have done an amazing job!

Thanks for checking in!

Saturday, June 13, 2009

100 Days











We have reached 100 days of seizure freedom! Yahoo!!! We are all so excited to get to three digits in our count. Grace is oblivious to it. She is miserable today. She is tired and cranky and has a runny nose. Hopefully she will take a nap and wake up in a better mood.

Overall Gracie is doing fine. She is hovering at the 28 pound mark for her weight. Her hair is still thinning a bit. In terms of degrees, you can see her scalp through her hair when you look down at her head. It is not overtly noticable at this point.

Rita had her dance recital this week. This was her third recital. She loved performing and had the hugeswt smile on her face the whole time she was on stage. Grace is so ready to have her turn in the spotlight! She was taking dance earlier this year but we stopped it in March when things got crazy. Next year, Gracie can take a class and be a part of the show. She can hardly wait!

This is birthday party weekend for Rita. She has 2 birthday parties this weekend - one today at a swing set place and one tomorrow at Build-a-Bear. I get to take her to both. However, I was informed this morning that she would rather if her Father took her - he is more fun! Children are way too honest sometimes! I was surprised that she wanted Tom to take her to today's party - the guest of honor is the same boy how called her earlier this week.

While Rita and I are going to parties, Tom asked Gracie what she wants to do. Gracie's response is that she wants to take a walk. This is her frequent request. She loves to take a walk after dinner each night. A walk to Gracie is that she gets into a stroller or wagon and gets pushed or pulled around the neighborhood. Tom thinks it's funny that she wants to keep walking when she doesn't do any walking! Rita now likes to take her bike out. She will ride along while we all walk (or ride). The kids like looking for birds, rabbit and other animals while on a walk. It's good for all of us.
Thanks for checking in.
Marie, Tom, Rita and Gracie

Monday, June 08, 2009

It's Starting....

We just had a very amusing phone exchange...Rita had her first phone call from a boy! I did mention that she just turned six, didn't I??? This is very strange. It's a good thing he r father was not home yet. He told her she is not allowed to talk to boys until she is 30! Anyhow, the boy in question called and asked to talk to Rita. I gave her the phone. She handed it back to me to talk twice. Then the phone was returned to me to hang it up. Rita seemed quite pleased that this boy called her. I just don't know how I am going to break this to her father!

The girls are growing up so fast. Rita is now six and she has only 9 days of kindergarten left! Gracie is three but she is now telling folks she is five. Sometimes she says she is three and five. Despite everything that has been going on with Gracie she is right about where we would expect her to be at three (almost three and a half).

Grace seems to have adjusted to her last medication shift quite nicely. She is noticably more alert and interactive with everyone. She is certainly more playful. We often wonder how much all of the medication represses Gracie. Since we would not dream if withholding her meds to find out, we can only guess. However, a few weeks now after dropping her dose of Depakote, we see more of her personality coming through. She is one funny kid!

Grace is now officially on the ketogenic diet at a 2:1 ration. The nutritionist determined that is her ratio since we started letting her eat unlimited protein. We were given a full meal plan at this ratio. We are no longer using the heavy cream option so she must have a syringe of oil with every meal but she gets more carbs and protein so she seems happy with it. The plan we are at now definately seems like something we can live with. It is much more portable and we are eating out again now.

Whatever we are doing, Grace seems to be responding well to it. On the home scale she is up to 28 pounds. This is a victory for us. She was 31 pounds before starting the diet but we were having trouble getting her over 26 pounds. We are also in the 90+ day range for seizure freedom! Another victory. We are awaiting the lab results to see if we need to add any additional suppliments. Her hair has thinned out a bit. We can deal with that. Hair is not so important in our house :-)

Thanks for checking in!

Sunday, May 31, 2009

Still with the program

We had our appointment with the keto team last week. The diet is definately helping with the seizures. The only seizures Grace has had since starting the diet were the week she came down with pneumonia back in March - giventhe fevers she had that week, this was expected. The great news is that they responded to the medicine and were short. The downside of the diet is that Grace is not putting on weight. She grew almost two inches since starting the diet but she has not gained back the weight she lost since starting the diet. This puts Grace well under the fifth percentile for weight given her height. In addition, her hair is starting to thin and the hair itself is brittle. We need to take Grace for some additional bloodwork to check on her nutrient levels. She might be given additional suppliments to take to help resolve some of the diet side-effects.

The biggest shock I had from the visit was that our approach to get her to eat - allowing her unlimited protein - is exactly what the keto team would have recommended. I felt after our prior visit that this would not be allowed. I actually thought that by morphing the diet the way we did that she would no longer be considered under the program. I am happy to say that was not the case. I do believe that in this case the theory of being easier to ask forgiveness than permission held true!

Gracie's new passion is peanut butter. She eats several spoonfuls of peanut butter - at a meal! We are going through a small jar of peanut butter in a matter of days. When nothing else works, we are able to get her to eat peanut butter and McDonald's chicken nuggets - with the breading peeled off, of course!

Tom also started giving her some of the special Nano VM suppliments again. For a while, she was gagging on it and spitting it up, so we stopped trying to force this on her. Tom is the recipe master and he managed to mix the powder in with the ground up keppra and an absolute minimum of liquid. She already hates the Keppra and calls it her 'yucky'. Now, she gets the vitamins in along with the yucky. I guess she is expecting it to be yucky and she is ready with a drink to wash it all away, she doesn't realize that an additional yucky thing has been added in.

In other news, Rita turns 6 today! Happy birthday to the best big sister! We had Rita's party last night at Bounce U. It was a lot of fun. The energy level from 20+ kids her age running and playing was great.

Thanks for checking in and keeping us in your thoughts and prayers!
Marie, Tom, Rita and Gracie

Sunday, May 17, 2009

Sshhhh...

Our seizure free day counter is now up to 72. Woo Hoo! The last few seizures Gracie had have all been febrile - caused by fever. Her last non-febrile seizure was in October 2008. In regards to seizures - Gracie is doing great!



Grace has decided that the diet is not for her. She go to the point where she just flat-out refused to eat - anything! Of course, she would be happy to have a chip or cracker or such but nothing else. The beginning of the month, Grace dropped back into the 24 pound range. We did try force-feeding her but she is getting smarter - she would make herself gag until whatever got forced down came back up - or she would just spit out a mouthful of oil or heavy cream at whoever was trying to feed her. Out of desperation, we started letting her eat all of the protein that she liked; we switched from heavy cream to all oil; we started giving her Flintstone chewable vitamins instead of the Nano VM vitamins. As of this morning she was almost back to 26 pounds - 25.8 to be exact.



In the midst of the Gracie's hunger strike she was also having trouble staying awake. She was taking 5 hour naps in the middle of the day and barely able to stay awake at night until bedtime. She had a cold but that just did not explain her state of exhaustion. We got some lab work done and lo and behold, her Depakote levels were high again. Her neurologist lowered the dose by one capsule daily and we have been doing great. It took a few days for Grace to get back to a normal sleeping habit. Everything else was fine. We were worried about anemia and liver function but those were fine.



We go back to the doctor and the keto team on Tuesday morning. We put off our three-month visit because that was the point we were to make a committment. We are not ready to commit to the full ketogenic diet at a 4:1 ration. We are willing to commit to a Modified Adkins - which is pretty much what we have been doing the last few weeks.



Our neurologist cautioned us to not anger the seiure gods and we have been trying. However, we have given up on the strictest version of the keto diet and we adjusted her medication. Hopefully, the seizure gods stay in agreement and Grace stays seizure free!



Marie



P.S. I was at a family function today and I was reminded that many people have been checking the blog and I have not updated it recently! I will try to do better!

Friday, May 01, 2009

Doing OK

Everyone here is alright. I must admit that the news stories about the swine flu caught my attention. I am worried Grace will catch it and end up with pneumonia again. She has a sniffle right now and that it all. We are watching her VERY closely for any signs of things progressing. Yes, I am paranoid!

The girls are doing well. They seem to take turns waking up in the morning. One wakes up early and then 'helps' to wake the other. One morning Rita was very helpful and jumped on the bed Gracie was sleeping in. Grace just wanted to burrow under the covers and be left alone. The very next day, Rita was the sleeper and Grace was the helper. Grace decided to play doctor to Rita. It was quite amusing to watch Grace try to listen to Rita's heart with her stethascope while Rita was trying to dodge her ministrations. We would prefer that they both slept in once in a while and let us also sleep in - so far no luck!

We have not had our three-month visit with the ketogenic diet team. We are putting it off and off. Part of my reluctance is that I am not sure Grace is up to making the long-term commitment on the diet. Feeding her each day remains a struggle. She fights the heavy cream and oil. She refuses mayonnaise and butter which would at least help to add variety to her fat choices. Grace does not like the vitamin supplements and often spits them out. It is difficult to be sure that she is getting sufficient nutrition between the supplement issues and the not eating issues. We really want this diet to work. However, we don't envision 3 years of force feeding her to be a good thing. We continue to procrastinate.

Take Care and thanks for checking in!
Marie, Tom, Rita and Gracie!

Monday, April 20, 2009

Screening Done

We have been slowly noticing that Grace has some trouble with things that 'conventional wisdom' says she should be able to do. Tom and I talked to her team - her day care teacher and her doctors and each other. We decided to request a screening for Grace at the Intermediate Unit - the county agency that handles special education - in particular early education intervention. In discussions we decided that there was nothing to lose by asking for the screening. One of two outcomes were possible - they would deem Grace not at risk or they would recommend her for the next step - a full evaluation. Either outcome would be fine.

Today was the screening. It went well. However, we didn't really get one of the two anticipated outcomes - we got secret option number three. Score-wise, Grace should be referred for a full evaluation. However, the woman doing the screening was not wholly convinced that the score was truely reflective of Grace. Grace was asked to repeat small sentences and she only got one-third of them but then went on to have a full discourse where she repeated much longer sentences. When given a sheet with six pictures on it she was asked to point to something to cook with, she correctly pointed to the stove. However, when asked what picture was something she could wear, she picked the bed and said, I go to bed. I guess she was not going to wear the raincoat! Of course, she was able to talk about her jacket with no trouble. The evaluator thought Grace may have just not been in the mood to answer all of the questions. I agreed with her - this is typical Grace behavior. This is the child who speaks to everyone on the day of her neurology appointments except for the neurologist. This is the child who when asked if she is a boy or a girl responds, 'I a hot dog'!

The poor woman doing the screening was unsure if she should recommend her for a further evaluation or not. She was open and we discussed it. It was her opinion that Grace did not meet the milestone in one or two areas but she felt that she showed promise for developing those skills. She conferred with the psychologist as well. In the end, we decided to not recommend Grace for anything further at this point but to re-visit this again in about six-months if we feel it is warranted. I imagine that in six-months time I will feel another check in warranted :-) Grace enjoyed playing with the woman and was in no rush to leave so I'm sure she will be alright with going back. Part of the decision to not further evaluate Grace was based on the past few months she had medically. They seem to think the Grace is in catch-up mode - not necessarily delayed but more slowly progressing!

My sister was joking that since both Tom and I were going to the screening with Grace, that they may be tempted to evaluate one of her parents as well. We decided that it would be Tom that got picked for referral first. Lo and behold, not even 10 minutes into the session, the woman said that she would have to do two screenings today - one for Grace and one for Tom! It was very funny. At the end, we joked with her that the decision on Grace was hard to make, the decision on Tom was easy - he needed further evaluation!

Thanks for the good thoughts and prayers - for all of us!
Marie

Saturday, April 18, 2009

A Sugar-Free Easter











I am a week behind in posting about Easter - for no other reason than I was just procrastinating - no one was sick.

Easter went well. The Easter Bunny listened when we asked him not to bring any candy or sweet to the house. Easter baskets were filled with clothes and toy bunnies. Tom and I got the girls bathing suits and cover-ups along with a new movie for each girl. Other folks gave them pajamas, musical toys, big stuffed-animal bunnies - we totally avoided candy. Tom's parents had the usual big basket of candy and treats but it was placed out of sight while Gracie was visiting. At my sister's house, there was no candy in sight. If the Easter Bunny delivered any there, it was hidden before we all arrived.

We had an Easter egg hunt and all of the eggs were filled with non-candy items. We had lots of money - tons of change (some not even US currency) and a few dollar bills. There were lots of little trinkets from the dollar store - erasers, pony tail holders, spinning tops, super balls, slinkies, parachute men, jumping frogs - basically anything that could fit into the eggs! The kids had a blast. Rita was the big 'winner'. She found the most eggs so she got the most toys and money. Graceie just enjoyed opening the eggs and playing with each new thing she discovered. She did not quite get the boundaries of her eggs versus everyone else's eggs. However, she was 'stealing' from her big cousins so there was no problem - they were more than willing to share with her.

I am very pleased how Easter worked out with the diet. We managed to keep the candy out of the holiday and events and I'm sure Grace never even knew there was anything missing. I think even Rita remained unaware that anything was missing.

I included some photos from the line-up prior to the Eater egg hunt and some of the girls on Eater with my sister's daughters and one with all of the girls and my Father. With two daughters and five grand-daughters, it is fortunate one of his favorite sayings is, 'Blessed art thou among women'.
Marie
P.S. For some reason the counters on the days since starting the diet and last seizure are not working. I wish Gracie was 431 days or so since her last seizure! We are at about 43 days since the last seizure. Good but not 431!


Saturday, April 11, 2009

Spring Break - Kindergarten Style


















Well, we had our first spring break this year with Rita in kindergarten. I thought some time at the beach would be good for all of us. The girls had a great time feeding the pigeons and seagulls, blowing bubbles and flying kites on the beach. We came home with bags of sea shells as souvenirs. We went to Brigantine, NJ which is one beach town north of Atlantic City, NJ.
The first night we were all down together, we went to a seafood buffet at Harrah's Marina. The food was delicious. Grace had been refusing to eat for days prior and was having a few low blood sugar incidents. Well, she tried to make up for all her missed meals in this one meal! Grace ate about 30 bay scallops, 10 pick and peel shrimp and several crab legs. The beauty of it was she loved dipping her food into the melted butter. She ate way more than she should have for a given meal. Tom and I justified her eating frenzy saying it was only protein and fat and we were very careful to not let her have any carbs. We gave her extra oil and heavy cream after that feast but there is no way we kept to he 4:1 ratio with that meal! It was amazing to see the effect of food on Grace. She was animated and full of energy the next day. There was a lot less 'carry me' going on the next day.
Running and playing in the ocean air tired both girls out. They both took naps and Gracie slept really well at night. Rita was up by 6:30 every morning. It is so ironic that she is starting this sleeping habit already - on days off, she doesn't sleep; on school days, it is really difficult to get her awake!
We have expanded our eating out attempts. We try to keep Grace to the diet (not like the night at the buffet). Since we have a feel for what the portion sizes of most of her staple foods are, we can make good guesses when we are out. Most of her meals, we just order something she can eat and let her eat off one of our plates. She still eyes up the carbs she sees on other plates though. She is very interested in french fries and pancakes! It is somewhat sad to deny her the food that she wants but we know the results are worth it so we stick to it.
The biggest discovery of the week was Mini Vanilla Wafers - cookies. One of the mini wafer cookies is a carb serving for Grace. She was so HAPPY to have a cookie. I think she thanked me 20 times for a single cookie. We let her hold it when she was half-way through her heavy cream and she was allowed to eat it when she was done the heavy cream. She actually walked around hugging the box! I think the cookies may be coming to school next week for some snacks!
The pictures up top were from the week. Grace tried to weight herself on her food scale - she is the only one in our house that could fit on the scale! There are some photos of the birds and the girls!
Marie






Wednesday, April 01, 2009

Pictures
















It's been a while since I added photos.
The first is the girls visiting my work on Christmas Eve.
The second is Gracie playing with our friend Angel from China. Gracie caught on that Angel spoke Chinese so she started calling her the only Chinese word she knew - Ni Hao Ma - translation - how are you?
The third picture is Gracie from her most redent hospitalization. Some of the vetrinary medicine students were doing a project to deliver the stuffed animals shown and a corresponding book about a dog who was sick and needed to be in the hospital and away from his family. One of the students came to read the book to Grace and left her with the book and Josh, her new friend. Gracie snuggled with Josh and he was her new buddy!
The fourth picture is from a birthday party where the girls get done up - hair, make-up, nail polish and then singing and dancing. The birthday girl was turning 5. This picture is Rita but Gracie was primped the same.
The last one is a favorite of mine taken last summer. The girls were helping me to take photos of a quilt I made for my nephew's high school graduation gift.
Wishing everyone all the best!!
Marie

Monday, March 30, 2009

Adjusting

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?
Toast.
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!

Marie

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.

Marie