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
Monday, April 20, 2009
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 :-)
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
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!!
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!!
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