Friday, January 30, 2009
We are often nervous leaving the girls for the parent's night out. Grace has a bad track record of having seizures during these nights. Twice we have been called from a restaurant that Grace was having a seizure and the ambulance was on the way. We were thrilled to have a 'normal' end ot our eveing and no ambulance runs! We arrived to hear that Grace was running around and reeking havoc like all healthy three year olds! The teachers were a bit amazed at how well she was running and playing.
The downside was that Grace did not eat very well for everyone today. She had an incomplete breakfast and then she didn't finish all of her lunch or dinner. It's tough to ask others to force feed her. If she is at home and doeasn't eat, we convert her exchanges into something liquid and use a sryinge to basically force feed her. When she refused to eat, we give her whole milk, heavy cream and melted butter or oil on the side. She doesn't really like it but it gets some much needed calories into her! I am hoping that today was just one of her not-eating days!
All the best!
Marie, Tom, Rita and Gracie
Thursday, January 29, 2009
Grace is quickly getting tired of the food - especially the heavy cream which is a staple of every meal and snack! Last night I got out some food coloring and added a drop to her heavy cream pudding. Rita also had to have a pudding last night too. So, the girls sat together and devoured their colored puddings! Of course, the nutritionist saw one of the colored puddings today and asked what it was. Apparently food coloring has sugar alcohol so Grace is not supposed to have it. The nutritionist did recommend using some sugar-free Jello gelatin mix to add some color and flavor. They are deemed safe. We will try them out this weekend and see if Grace will eat it.
There were three other children all starting the diet the same time that Grace did. The parents all attended the classes together at the hospital and got to know each other a bit. Today at Grace's check-up, we met up with one of the other families. Their little girl is a beautiful child about to turn 4 in February. She has a smile that lights up a room. This sweet little girl was walking and talking until her seizures started at age two. When we met her in the hospital, she was unable to walk or talk. Her mother shared the incredible news with us that yesterday her daughter took three steps on her own. Talk about diet success stories! And this was not just a fluke. Today she took a single step on her own to show off for her grandmother! We are all cheering for continued success for this little girl!
This is week three of the diet and already the children are doing so much better! The diet is not without it's challenges. However, these results make it worth the battle! I think we were all pleasantly surprised at how well the children are doing with the diet.
Thanks for all of the love, support and prayers!
Marie, Tom, Rita and Gracie
Sunday, January 25, 2009
Thursday, January 22, 2009
Tom got a brand new wok for Christmas and sad to say, the girls sitting in it is the only action the wok has gotten so far! We also got a new set of pots and pans that have yet to be christened.
Wednesday, January 21, 2009
Tuesday, January 20, 2009
Sunday, January 18, 2009
Saturday, January 17, 2009
Friday, January 16, 2009
Thursday, January 15, 2009
Gracie's cousin Allison made her a blanket and matching pillow for her birthday. The pillow is such a hit and several folks wanted to know how to make the pillow. Here are instructions to make one yourself.
What you need:
(These amounts should yield two pillows. For the first pillow, use one fabric as fabric A and for the second pillow use the second fabric as fabric A.)
Fabric A - 1/2 yard of fleece fabric
Fabric B - 1/2 yard of fleece fabric
Cut from Fabric A:
one patch 16 inches by 29 inches
two patches 9 inches by 16 inches
Cut from Fabric B:
three patches 9 inches by 16 inches
Place cuts about every inch that are two inches deep on all patches. This will form the tags that get tied together to form the pillow.
Tie the small patches together - alternating B-A-B-A-B patches. This will form the top patch.
Tie the assembled top patch to the large, remaining patch. Leave a section untied.
Stuff the pillow with quilt batting or polyfill. (Leftover quilt batting pieces are great for this.)
Tie the remaining open section.
Happy Pillow Making.
Thank you Allison
Wednesday, January 14, 2009
We started to find ways to make things work for her and we are learning how to calculate exchanges so we are starting to get comfortable adjusting her meal plan. Grace is now up to the 4:1 ration, which is the goal, so she is getting a lot of fat with each meal. We found that she will tolerate the heavy cream mixed with oil. She doesn't like it as much as the straight heavy cream so we give her some straight heavy cream and some mixed with oil. Tom has had to give her this via a medicine syringe - but she gets it all in. She ate peanut butter mixed with butter and tomatos mixed with mayo and macademia nuts - after we added salt and pepper! The goal is to find ways to mix the fat in with other foods. Before she went into the hospital she was eating butter by itself. For whatever reason, she will not eat the butter stand-alone in the hospital. Maybe because we want her to eat it!!
Gracie's energy level is very low. This is an expected side effect of the diet initiation. It is expected that her energy level will bounce back in about two weeks. Right now she is very lethargic. She gets a burst of energy after eating but it quickly dissipates. She is happiest just snuggling up in Mom or Dad's lap. Usually she wants to be carried but it is even more extreme right now. She has foudn that wuite a few of the nurses are happy to pick her up and carry her. She is very light and she just snuggles in so they seem quite happy to lug her around. Tom and I came back from classes twice today to find her snuggled up with a nurse!
If you have had any experience with CHOP - Children's Hospital fo Philadelphia, you already know how wonderful all of the people are that you encounter there. The ketogenic diet team is good. They get great support from the team of nurses, nurses assistants and child life specialists who are also wonderful. The people who come into contact with us - patient and family - are really supportive and helpful. We are very grateful to have such an excellent facility so close to home. One of the families in the program with us has travelled 5 hours from Virginia to be there. Every time we stay at CHOP, we meet families who have travelled quite a bit to be there.
My plan with Rita for tonight is to bake some cookies. We will not be doing this once Grace is back home. It would be really mean to torment her with the smell of fresh baked cookies and then not let her eat any. We are trying to find ways that Rita does not have to be deprived of sweets and such while not teasing or taunting Grace with things she can not have. Before Grace comes home, we need to get rid of all of the 'junk food' from her reach. Grace likes to help herself so we need to break her of that happen for now.
I left the camera at the hospital and I am home now so no photos for tonight.
All the best!
Tuesday, January 13, 2009
We got Grace unpacked and decorated her room! She loves the poster her day care class made for her. Everyone who comes in comments on it! We also read the book that Ms. Nicole made for her with pictures of her school and class.
Grace had her 'last supper' of non-keto food last night. Top on her wish list - french fries. I thought for sure she was going to ask for a hot dog. To make sure she got good french fries, Tom went and got her McDonald's french fries! If you aren't going to have them for a few years, it makes sense to have the best!
Our check-in/admission went very smoothly. Almost too smoothly. They said that it could wait until Tuesday morning to start the IV and do the first blood draws. However, there was some confusion and about 10:30 last night - just after Grace settled in for the night, they came to start the IV. Then since she had the IV, they started her on the schedule - blood draws at 2:00 AM, 6:00 AM, noon, 6:00 PM and 10:00 PM. Needless to say, Grace did not get a good night's sleep - neither did Daddy!
Grace met the team yesterday. I forgot that she has not met the ketogenic diet team before. She was charming with everyone yesterday afternoon. I'm not sure how long that will last today given her lack of sleep last night! Yesterday she was giving hugs to everyone. She even gave out her Tigger and Winnie the Pooh stickers. I'm afraid today will be all rasberries and sass!
I hope to have pictures to share later!
Monday, January 12, 2009
Grace seemed to pick up on the nervous energy that Mom and Dad both had. She slept about an hour and then woke up. She then played until about 1:30 AM. Grace woke up this morning to say goodbye to Rita and see her off to school. We keep telling them that they will not see each other for a few days. I guess it sunk in. For the most part, the two girls are quite close and play well together. Here is a photo of them at Christmas sharing Grace's new toy.
We are all set to go today. We got the call from the hospital that Grace is not scheduled to 'check-in' until 3:00 PM. She will get processed through admissions and then brought up to her room. We will then have training classes this afternoon to learn how to take her blood glucose levels and to check for ketones in the urine. We thought we would actually do more today.
This schedule may work out well. Grace has such trouble when they need to draw blood or insert an IV. We have all day to pump her full of fluids and hope that the IV insertion will go well this afternoon. It is so difficult to stand by and watch the doctors or nurses try to find a good vein for a blood draw or IV. Grace is this tiny little child with amazing strength. She has astounded several medical teams that she can buck off several adults trying to hold her down for this process! When she had pneumonia last month, it took 5 doctors and nurses to hold her down to try to get a blood draw. Grace still weighs under 30 pounds but when she is motivated, she has the strenght of a grown man!
I mentioned the skirt that plays the Chicken Dance. There is a picture of Grace with her skirt. Shew is wearing it as a cape rather than a skirt! If anyone is interested in more information on the musical skirts, the company is Acting Out and their website is http://www.actingoutdressup.com/ .
Hoping for the best....