Alisha had a hard time puting on her socks orthotics and shoes. Normally, when she gets frustrated she crys and whines and I tell her that she needs to talk and ask for help if she needs help. This morning she started not only hitting herself in the head but she started biting and twisting her fingers. I talk to her the same way that I do when she is frustrated and don't say anything about hitting or biting herself. At the center part of the protocal is completely egnoring bad or undesireable behaviors. That doesnt apply to everything but most everything and it gets huge results. If she is still doing it when we get home I will take her in for a once over to make sure she doesn't have a sinus infection or some other random uncomfortable head thing that doesn't have a lot of symptoms. (It's been found out I've heard from CdLS moms that some of the kids have behaviors like that when they are not feeling well. Usesully it has something to do with the head. Like always kids vary.)
I woke up feeling the need for my virtual commando mom gear. I felt this might be my last day to really make a difference while we still have any reasonable amount of time left. I was filled with desperation. All the way to the center I'm playing kick butt songs on the CD player. I get there and I'm just waiting for the good ole' doc to come talk to me. I was planning to give him the mother look of death right in the eyes and tell him to go cut the fruit!!! (sadly I'm editing.. I was just horrible!) Then with practically a chorus of angels Brittney walks out to greet us!!!! I called out "BRITTNEY!! My favorite person!!! She asked how everything was going even though I'm sure she had gotten an earful already. Then she listened to all I had to say. She told me that she asked about what happened to the chewables too. Anyway, with our Brittney back Alisha was given chewables again. She refused them.. Then she refused them some more.. Later I think to leave the room she had to take at least one bite. We were introduced to the nuk brush to help her open and take the bite chew swallow and then go back to the play room.
Later back at the hotel Alisha ate sweet potatoes with rice cereal and peas. Then we watched Pengu while Alisha drank her night time milk.
Thursday, July 23, 2009
Day 31
Alisha weighed 30.13lbs. and drank 120mls of formula after her fist and second meal.
I was also really excited about this day. The doctor had told me that he would have a plan for Alisha and we would proceed with it. So when I get there I am more then ready to go on whatever plan he has in mind. I had been talking with family over the weekend. They were concerned that we were stopping for the weekend too but I told them that we would have a plan on Monday and it will be fine....... I'm also telling them because it's helpful to hear myself say it.
The doctors plan was.. Let's just drop the chewables Alisha is really resisting and I think he was worried about her fighting puree and everything. He also said that he thought that she would just pick up the chewables at home. I hate when I'm so surprised by something that I don't react the way that I think I should have later when I have more time to get really frustrated about it. (Usually it gives me more time to think outside of the moment and I don't regret as many things but it takes me a while to really start thinking that way. In this case I got more and more upset and totally increasingly beyond obnoxious about it AND regretted it later) I was thinking and saying LOTS of things.. Like "How dare you say anything about parents quiting or not being consistent!! Pansy!! When the chips are down you are not sharing anymore brilliant ideas and just send me thousands of miles away to figure it out alone!! She can chew and swallow not an issue this is a behavior issue which is his area and he is quiting!!?!?! I'm still standing here!!! I'm not quiting!! I'm NOT quiting!!! Yeah, clearly she will do this on her own we are here on vacation!!
Perhaps it's better that I don't go 0-60.. I do end up saying just about everything that I'm thinking just in a more constructive way later. I don't hate him at all. I was really hating that he was totally willing to sell Alisha that short of where she could be. (please read other posts to follow I eventually had some enlightenment..) I talked quite a bit about that at the parent meeting. I felt at least heard. I tried to constructively talk it out with him and I wasn't seeming to get anywhere just being nice about it. I left today feeling really frustrated. I keep hearing different people tell me different days that our beloved Brittney would be back including not until Thursday... Friday is our last day!!!
I was talking to Jeff about it on the way home.. He was getting frustrated that I'm wanting to fight it. When I don't feel that it's right and it's this important I really feel that I need to do all that I can. Whatever it takes. I was frustrated with him being frustrated me and feeling like there was nobody left standing on my team but me. I really hate that feeling...
Later Jeff text me to let me know that his Grandma died. She had been home on hospice for about a week and Jeff got to go see her and be with his family there. Last week she understood things and she said that she thought that it was really great that Alisha gets to be part of this program. This same day a tornado hit Shyanne's house. Shyanne is a great mom!! She started the program about three weeks after the rest of our group did. I don't know if they normally start everyone all in the same phase or if it was because we are the first group through after moving to the new building. Which makes the Larraine's son the first graduate from the new center. Anyway, this was one heck of a day.
I was also really excited about this day. The doctor had told me that he would have a plan for Alisha and we would proceed with it. So when I get there I am more then ready to go on whatever plan he has in mind. I had been talking with family over the weekend. They were concerned that we were stopping for the weekend too but I told them that we would have a plan on Monday and it will be fine....... I'm also telling them because it's helpful to hear myself say it.
The doctors plan was.. Let's just drop the chewables Alisha is really resisting and I think he was worried about her fighting puree and everything. He also said that he thought that she would just pick up the chewables at home. I hate when I'm so surprised by something that I don't react the way that I think I should have later when I have more time to get really frustrated about it. (Usually it gives me more time to think outside of the moment and I don't regret as many things but it takes me a while to really start thinking that way. In this case I got more and more upset and totally increasingly beyond obnoxious about it AND regretted it later) I was thinking and saying LOTS of things.. Like "How dare you say anything about parents quiting or not being consistent!! Pansy!! When the chips are down you are not sharing anymore brilliant ideas and just send me thousands of miles away to figure it out alone!! She can chew and swallow not an issue this is a behavior issue which is his area and he is quiting!!?!?! I'm still standing here!!! I'm not quiting!! I'm NOT quiting!!! Yeah, clearly she will do this on her own we are here on vacation!!
Perhaps it's better that I don't go 0-60.. I do end up saying just about everything that I'm thinking just in a more constructive way later. I don't hate him at all. I was really hating that he was totally willing to sell Alisha that short of where she could be. (please read other posts to follow I eventually had some enlightenment..) I talked quite a bit about that at the parent meeting. I felt at least heard. I tried to constructively talk it out with him and I wasn't seeming to get anywhere just being nice about it. I left today feeling really frustrated. I keep hearing different people tell me different days that our beloved Brittney would be back including not until Thursday... Friday is our last day!!!
I was talking to Jeff about it on the way home.. He was getting frustrated that I'm wanting to fight it. When I don't feel that it's right and it's this important I really feel that I need to do all that I can. Whatever it takes. I was frustrated with him being frustrated me and feeling like there was nobody left standing on my team but me. I really hate that feeling...
Later Jeff text me to let me know that his Grandma died. She had been home on hospice for about a week and Jeff got to go see her and be with his family there. Last week she understood things and she said that she thought that it was really great that Alisha gets to be part of this program. This same day a tornado hit Shyanne's house. Shyanne is a great mom!! She started the program about three weeks after the rest of our group did. I don't know if they normally start everyone all in the same phase or if it was because we are the first group through after moving to the new building. Which makes the Larraine's son the first graduate from the new center. Anyway, this was one heck of a day.
Day 30
Today Alisha ate prunes and mixed berry apple sauce before church. This was the last Sunday at the Ferndale ward. A day that I knew would be sad and hard for me on the very first sunday there. The people were so nice!! Welcoming does not even cover how giving these people were. I'm pretty sure that I almost wouldn't need a ward phone book if we moved because almost everyone at some point has given me their phone number. I even had a lady's husband say I'm sure that my wife has given you our phone number and I wanted to let you know that if you need anything to feel free to call us. How awesome is that!!! A husband that doesn't wait to be valenteered!! Another great but small things is that this ward has a blown up lamenated map with all of the families names and addresses on small strips of paper and straight pinned to the location that they live in. I have always wanted that but never had it. It would really help me to understand where people lived in relationship to eachother. I think this really helps with the camunity feel because Iwas told that if you drove from the top of the ward boundries to the bottom it would take about an hour. I'm not familiar with the area but I can tell you that the towns seem to be very small and I think that it would be very hard to know the names of all the towns and then also to know where they are in realation to eachother. I drive through three towns from the hotel to the feeding center in six miles. Another thing that I have always wanted is that by the Relife Society room (where the ladies meet) there are snap shot pictures of every sister with her fist and last name. That was a great help to me when I was there. They seemed to have around 20 sisters every week and I think that it would be a bigger help the bigger the group of sisters. On the other hand their building is really kinda off the beaten path and they are the only ward that uses the buidling. I really miss the sisters and one thing that I really want to take back with me is how welcoming they all were. Without being smothering at all it seemed just about everyone took it upon themselves to be my friend as if they were the only one. It was a home away from home for me and I hope they understand what a difference they made for me. We were just about the last people to leave the building. It was just hard to go. They had a linger longer and a swap shop that day. Their linger longer is a potluck lunch with tables set out and really inviting for families to stay. It was the perfect last week. I'm so glad that I got to meet them. After we got home to the hotel Alisha ate Apple sauce with rice cereal and peas. Mataya and I ate grilled cheese sandwiches the way that I'm pretty sure that Grandma Lucy used to make them. I was feeling that home~E need.. We also baked the last of the gluten free cookies.
later that night at 8:00 Alisha ate gf waffle with mixed berry apple sauce and apple sauce.
Another thing is that Alisha has started hitting herself in the head when she is frustrated. I'd almost forgotten that she used to bang her head on the floor until she was 18mo or 2years old.
later that night at 8:00 Alisha ate gf waffle with mixed berry apple sauce and apple sauce.
Another thing is that Alisha has started hitting herself in the head when she is frustrated. I'd almost forgotten that she used to bang her head on the floor until she was 18mo or 2years old.
Wednesday, July 22, 2009
Day 29 fun and Waffles..
Today we really focused in and did GREAT!!! We also found lots of pockets of time to have fun between meals. It helped that the doctor said to space the meals out to every three hours and increase her meals to 2.5 oz. total between two foods. No problem!!
Alisha ATE!!
Prunes and blueberry gogurt at 9:30am
Waffles with mixed berry applesauce and peaches with rice cereal and a little water at 12:30
This was a fun meal because I tell her what she is eating when she already has it in her mouth I say things like "Good job Alisha!! Awesome waffle bite!!" She swallowed and said "Awful." I said no, Alisha waffle." She said "awful." I said Alisha it starts with a W it's WWWWWaaaffle." She said "No, it's horrible." I was so shocked I laughed so hard I about cried..
We took pictures in the mountains.. Nope.. it just looks like it. Actually it's between the parking lot to the hotel and a four lane road on the other side. Wayne and lots of the area around here is so beautiful! This is what it looks like when you build what you are going to build and leave the rest alone. TONS of trees!!! Just beautiful!!!
We had a great time playing with monster mitts!! Velcro mitt or pad "catches" the tennis ball it's WONDERFUL!!! Helps Mataya better then anything else we have done for her tracking things with her eyes and the "mitts" fit on with an adjustable Velcro strap in the back so Alisha can catch too!!! Truly awesome things available at Beyondplay.com!! We also got the rocket ship bubbles. I have been wanting those for a couple a years. A therapist brought it over to our house a few times. Squeeze the sides of the rocket and the wand comes up with out actually touching the wand and just blow. That was really fun!!
Alisha ate sweet potatoes with rice cereal and peas at 3:30
we picked things up in our room and watched cartoons. It was so nice to have some down time with the three of us together.
Then we went to the park near the hotel. Sadly this was the first time that we have actually gone to the park. There have been a few rainy days and from the parking lot it didn't look very exciting to me.. It was raining really hard the day that we looked.... It is a wonderful park that pictures could never capture!! Pictures look too flat and never show the depth of all the trees around. Plus it has two gated entrances.. One goes to the top of the play structure and the other goes down a paved hill to to the lower play ground area. There is a marry go round which we got a kick out of because those are taken out of all the parks at home. This was the first time the girls have ever seen or been on one and it was great! there are tons of swings and monkey bars just all kinds of things very very well layed out park tons of trees and so the whole park is in the shade and doesn't get too hot there are picnic tables and other benches around too it was really fun!! While we were at the park Alisha ate Mixedberry applesauce and peaches. She did a great job.. I didn't soo much.. I said "Good Job!! Last bite." As I gave her the last bite. She hopped down off the bench before she had it swallowed and everything came up..
After we played at the park for a while longer we went out to Neil's Pizzeria & Restaurant at 568 Valley Rd. Wayne, NJ. They were wonderful!!! They have gluten free pizza and TONS of other pizza type things really some I've never seen before but they were all made with flour so you will have to hear how great they taste from somebody else. Our pizza was great!! We got a medium with half pineapple and ham and the other half veggie. Let me just say that when you say veggie it is fully loaded with everything!!! Stuff that I forgot were vegetables were on this pizza and it was a masterpiece!!! Beyond the pizza was the service!! these guys were great!! I ordered my pizza and the guy walked away and started making it so I sat down with the girls. Then they brought the pizza out I said "oh, I need to pay you." and started to stand to go to the register because it's a small place and at home that's just how it is with pizza. The great guy who brought out the pizza said "Oh, no sit.. you eat enjoy.. it cost the same later." So funny.. you just got to love it!! I know I did!!! If I lived here that would be my one of my favorite places to keep coming back to because they treat ya so nice.
K, so now we are so totally full and I realized it was the first hot thing for dinner I have had in a long time. The Hotel makes good dinners but needing to eat gluten free Mataya and I eat salad with dressing and chips with salsa sometimes olive slices or shredded cheesed and either A&W root beer or sprite. I think I might crave it at home sometimes.. Anyway, we were full but we need Alisha to drink her night time milk. (her Nutren 2.0 that she would have normally had pumped into her stomach all night for a total of 80z at 35~45mls an hour.) One of her favorite ways to have her drink is to pull up our netflix account on the laptop and pick from the instant watch list. Doing this we found Pingu!!! We LOVE Pingu!! He is a young boy claymation penguin no real words but really funny. We have watched them a few times and she finishes her night time milk in about thirty minutes. I have never been able to pump that into her that fast. She does great. I tell her that she can keep watching IF (at our house we call that the stepmother IF because of Cinderella) she keeps drinking. It's really pretty great!! I'm thinking that in not really long we will be done with pull ups because she no longer needs to be pumped all night. I'm willing to be slow changing that she has done really well with a lot of changes all ready and I know it will come so that makes it easier for me to wait.
Alisha ATE!!
Prunes and blueberry gogurt at 9:30am
Waffles with mixed berry applesauce and peaches with rice cereal and a little water at 12:30
This was a fun meal because I tell her what she is eating when she already has it in her mouth I say things like "Good job Alisha!! Awesome waffle bite!!" She swallowed and said "Awful." I said no, Alisha waffle." She said "awful." I said Alisha it starts with a W it's WWWWWaaaffle." She said "No, it's horrible." I was so shocked I laughed so hard I about cried..
We took pictures in the mountains.. Nope.. it just looks like it. Actually it's between the parking lot to the hotel and a four lane road on the other side. Wayne and lots of the area around here is so beautiful! This is what it looks like when you build what you are going to build and leave the rest alone. TONS of trees!!! Just beautiful!!!
We had a great time playing with monster mitts!! Velcro mitt or pad "catches" the tennis ball it's WONDERFUL!!! Helps Mataya better then anything else we have done for her tracking things with her eyes and the "mitts" fit on with an adjustable Velcro strap in the back so Alisha can catch too!!! Truly awesome things available at Beyondplay.com!! We also got the rocket ship bubbles. I have been wanting those for a couple a years. A therapist brought it over to our house a few times. Squeeze the sides of the rocket and the wand comes up with out actually touching the wand and just blow. That was really fun!!
Alisha ate sweet potatoes with rice cereal and peas at 3:30
we picked things up in our room and watched cartoons. It was so nice to have some down time with the three of us together.
Then we went to the park near the hotel. Sadly this was the first time that we have actually gone to the park. There have been a few rainy days and from the parking lot it didn't look very exciting to me.. It was raining really hard the day that we looked.... It is a wonderful park that pictures could never capture!! Pictures look too flat and never show the depth of all the trees around. Plus it has two gated entrances.. One goes to the top of the play structure and the other goes down a paved hill to to the lower play ground area. There is a marry go round which we got a kick out of because those are taken out of all the parks at home. This was the first time the girls have ever seen or been on one and it was great! there are tons of swings and monkey bars just all kinds of things very very well layed out park tons of trees and so the whole park is in the shade and doesn't get too hot there are picnic tables and other benches around too it was really fun!! While we were at the park Alisha ate Mixedberry applesauce and peaches. She did a great job.. I didn't soo much.. I said "Good Job!! Last bite." As I gave her the last bite. She hopped down off the bench before she had it swallowed and everything came up..
After we played at the park for a while longer we went out to Neil's Pizzeria & Restaurant at 568 Valley Rd. Wayne, NJ. They were wonderful!!! They have gluten free pizza and TONS of other pizza type things really some I've never seen before but they were all made with flour so you will have to hear how great they taste from somebody else. Our pizza was great!! We got a medium with half pineapple and ham and the other half veggie. Let me just say that when you say veggie it is fully loaded with everything!!! Stuff that I forgot were vegetables were on this pizza and it was a masterpiece!!! Beyond the pizza was the service!! these guys were great!! I ordered my pizza and the guy walked away and started making it so I sat down with the girls. Then they brought the pizza out I said "oh, I need to pay you." and started to stand to go to the register because it's a small place and at home that's just how it is with pizza. The great guy who brought out the pizza said "Oh, no sit.. you eat enjoy.. it cost the same later." So funny.. you just got to love it!! I know I did!!! If I lived here that would be my one of my favorite places to keep coming back to because they treat ya so nice.
K, so now we are so totally full and I realized it was the first hot thing for dinner I have had in a long time. The Hotel makes good dinners but needing to eat gluten free Mataya and I eat salad with dressing and chips with salsa sometimes olive slices or shredded cheesed and either A&W root beer or sprite. I think I might crave it at home sometimes.. Anyway, we were full but we need Alisha to drink her night time milk. (her Nutren 2.0 that she would have normally had pumped into her stomach all night for a total of 80z at 35~45mls an hour.) One of her favorite ways to have her drink is to pull up our netflix account on the laptop and pick from the instant watch list. Doing this we found Pingu!!! We LOVE Pingu!! He is a young boy claymation penguin no real words but really funny. We have watched them a few times and she finishes her night time milk in about thirty minutes. I have never been able to pump that into her that fast. She does great. I tell her that she can keep watching IF (at our house we call that the stepmother IF because of Cinderella) she keeps drinking. It's really pretty great!! I'm thinking that in not really long we will be done with pull ups because she no longer needs to be pumped all night. I'm willing to be slow changing that she has done really well with a lot of changes all ready and I know it will come so that makes it easier for me to wait.
Day 28
Alisha weighed 30.13lbs. She drank 90mls after every meal. Today we were working with one of the doctors filling in for Britney. I'm catching up on the blog again and I have to say that I remember most about this day was that it was Larraine's last official day. I was sad to see her go and I know that her being there made all of the difference to me. I really like and get along with the other moms too but they had more plans or less holes in their schedules family visiting and things and so Larraine and I were together more often. I loved that she liked to talk and joke around. I had already bought some books before Larraine and I really started talking. I had things to do and I still did a lot with Mataya . Larraine is what some older folks call a kick in the pants!! She has always worked with lots of people and has really fun ways of saying things. In fact I think I have heard her call people a kick in the pants.. Larraine's not old though, she can't be we are just about the same age. ;) Anyway, Mataya and I really enjoyed being with her.
Plus Larraine leaving brought up how close we are to leaving and on this particular day Alisha refused to eat her "chewables". The doctor tried a few techniques after a feeding or two that I did with Alisha that just didn't go over very well. She ate all of the pureed food and just about none of the "chewables." She kept saying things to me during the meal about how she only wanted to eat the two pureed foods or "Only these two they are faster." Meaning I don't have to chew those so that's all I want to eat...
I cried during my turn at the parents meeting that day. We meet together with our wonderful Pam every Friday to ramp up for the weekend and every Monday to cover how our weekends went. It seems that the Friday meetings are always more teary then the Monday ones.. Anyway, I was looking at Larraine for the last time across the table and was kinda trying not to look at her. It didn't seem to matter at all who I looked at I know that I will miss them all!!! Alisha was going backwards with the chewables that she was eating fine the day before. The weekend was coming up and we really need to fix this before we go home with not many days left. I was sitting across the table from Anne and her husband-- Anne took us to New York and she went every weekend that she has been here!! She is always fun to talk to but the thing that I don't think that I have mentioned about Anne is that it is her second time here. That is fine but the part about Anne's story that scares me is that they were just starting to get the "chewables" when they left and then totally lost them when they got home. So it's been puree and pasta for a year until they came back and had a really big go at chewables this year. Their son is doing great by the way!!!
I was just so scared of a year on puree to come back to get chewables and work on self feeding. while at the same time feeling ungrateful for all the solid improvement made in just a few sort weeks!!! Alisha is not using her feeding pump at all!!!! She drinks all of her formula that she was getting pumped before and on top of that she eats several pureed meals. She used to drink ice water and that was all and nibble on things that never really added up to much. Three crackers in one day would have me excited for a whole week!!! I remember the doctor telling me not to worry about feeding her chewables over the weekend just keep all of the purees going and keep her excepting those and that he would have a plan on Monday. I remember feeling conflicted about that. I felt that I was loosing too much time and that I didn't have enough left to loose and at the same time feeling some relief because I knew that I needed a better plan then what we currently had or I was going to in effect teach her to continue to refuse all the chewables all weekend and be very frustrated about it. I didn't feel that I had a real right choice to make... beyond not going to the beach and really putting everything into this weekend.
So going all puree is easy. At this point I feel that if I can make it a cake or pancake batter consistency then for the most part she will eat it. I also remember Brittney telling me that I should really be giving her more Puree and not so much baby food. So, no fault of Brittney's, I pureed up some frozen baked french fries. I was choosing to get excited about what Alisha was eating and that we have been advised to when possible puree up whatever the family is eating.
That sounded so freeing to me. So I went with that!! Sadly, here's how it turned out.. I blended just the fries at first. That was way too thick and I was expecting that so I added some silk milk. Still too thick so I added some mayo. Some people have mayo with their fries It's kinda bland and liquidish....and still too thick and there is limit on how much mayo I was willing to use. (this is starting to sound like a children's book.. LOL!!) So I thought ok fine catchup I was afraid of using it at first because it does have quite a kick but Alisha does like Spaghetti sauce. So the catchup was the finishing touch. Alisha did great!! She actually ate a few bites of my yucky crazy concoction.. and peas.. Then well, it didn't stay down. So I cleaned up and fed her the rest of the peas.
Later that night I went on line looking up ice cube trays with lids and there were puree cook books too. So I went to my library's web site and requested a ton of puree cookbooks!!!!
Plus Larraine leaving brought up how close we are to leaving and on this particular day Alisha refused to eat her "chewables". The doctor tried a few techniques after a feeding or two that I did with Alisha that just didn't go over very well. She ate all of the pureed food and just about none of the "chewables." She kept saying things to me during the meal about how she only wanted to eat the two pureed foods or "Only these two they are faster." Meaning I don't have to chew those so that's all I want to eat...
I cried during my turn at the parents meeting that day. We meet together with our wonderful Pam every Friday to ramp up for the weekend and every Monday to cover how our weekends went. It seems that the Friday meetings are always more teary then the Monday ones.. Anyway, I was looking at Larraine for the last time across the table and was kinda trying not to look at her. It didn't seem to matter at all who I looked at I know that I will miss them all!!! Alisha was going backwards with the chewables that she was eating fine the day before. The weekend was coming up and we really need to fix this before we go home with not many days left. I was sitting across the table from Anne and her husband-- Anne took us to New York and she went every weekend that she has been here!! She is always fun to talk to but the thing that I don't think that I have mentioned about Anne is that it is her second time here. That is fine but the part about Anne's story that scares me is that they were just starting to get the "chewables" when they left and then totally lost them when they got home. So it's been puree and pasta for a year until they came back and had a really big go at chewables this year. Their son is doing great by the way!!!
I was just so scared of a year on puree to come back to get chewables and work on self feeding. while at the same time feeling ungrateful for all the solid improvement made in just a few sort weeks!!! Alisha is not using her feeding pump at all!!!! She drinks all of her formula that she was getting pumped before and on top of that she eats several pureed meals. She used to drink ice water and that was all and nibble on things that never really added up to much. Three crackers in one day would have me excited for a whole week!!! I remember the doctor telling me not to worry about feeding her chewables over the weekend just keep all of the purees going and keep her excepting those and that he would have a plan on Monday. I remember feeling conflicted about that. I felt that I was loosing too much time and that I didn't have enough left to loose and at the same time feeling some relief because I knew that I needed a better plan then what we currently had or I was going to in effect teach her to continue to refuse all the chewables all weekend and be very frustrated about it. I didn't feel that I had a real right choice to make... beyond not going to the beach and really putting everything into this weekend.
So going all puree is easy. At this point I feel that if I can make it a cake or pancake batter consistency then for the most part she will eat it. I also remember Brittney telling me that I should really be giving her more Puree and not so much baby food. So, no fault of Brittney's, I pureed up some frozen baked french fries. I was choosing to get excited about what Alisha was eating and that we have been advised to when possible puree up whatever the family is eating.
That sounded so freeing to me. So I went with that!! Sadly, here's how it turned out.. I blended just the fries at first. That was way too thick and I was expecting that so I added some silk milk. Still too thick so I added some mayo. Some people have mayo with their fries It's kinda bland and liquidish....and still too thick and there is limit on how much mayo I was willing to use. (this is starting to sound like a children's book.. LOL!!) So I thought ok fine catchup I was afraid of using it at first because it does have quite a kick but Alisha does like Spaghetti sauce. So the catchup was the finishing touch. Alisha did great!! She actually ate a few bites of my yucky crazy concoction.. and peas.. Then well, it didn't stay down. So I cleaned up and fed her the rest of the peas.
Later that night I went on line looking up ice cube trays with lids and there were puree cook books too. So I went to my library's web site and requested a ton of puree cookbooks!!!!
Thursday, July 16, 2009
Day 27
Today Alisha weighed 30.11 pounds today. Alisha was tired. She only had about seven hours of sleep and she had to be redirected four to five times for not listening or sharing. They love her in the play room and they say "Sharing is caring."
She didn't quiet drink all of her night time milk the night before but she is looking really healthy and her blood sugar has been really stable for whatever reason don't know how come but I'll take that!! Alisha ate chewable pieces of peaches and pears along with the rest of her regular meals. At her third meal she licked a piece of waffle (she eat's them pureed) and refused all five pieces twice and then she ate all of her pureed foods at that meal. Britney will be out for a few days. I'm excited about the progress Alisha is making.
We visited the Wayne Hills Mall. While Alisha is in the cart I just keep her drinking and She drank all of her day time formula. The mall is all but closed. There are several doors that have signs saying that they are not open and to enter by the Quiznos. There is also a Burlington Coat factory that connects into the mall where there is still a Quiznos, somekind of a blended smooties and candy store and a Payless Shoes store. Everything else is gone and Burlington is having a 60% off sale on the whole store. I thought about a sheet set... can you imagine that!!!! Like I don't have enough to pack!!! I just laughed and we went to the hotel got ready to go swimming and down to eat.
At dinner time I fed she pureed avocado and mixed berry applesauce between bites she ate corn chips and drank a little more then 2oz. of water. We also went swimming and she is doing great swimming the length of the pool several times with her water wings on.
She didn't quiet drink all of her night time milk the night before but she is looking really healthy and her blood sugar has been really stable for whatever reason don't know how come but I'll take that!! Alisha ate chewable pieces of peaches and pears along with the rest of her regular meals. At her third meal she licked a piece of waffle (she eat's them pureed) and refused all five pieces twice and then she ate all of her pureed foods at that meal. Britney will be out for a few days. I'm excited about the progress Alisha is making.
We visited the Wayne Hills Mall. While Alisha is in the cart I just keep her drinking and She drank all of her day time formula. The mall is all but closed. There are several doors that have signs saying that they are not open and to enter by the Quiznos. There is also a Burlington Coat factory that connects into the mall where there is still a Quiznos, somekind of a blended smooties and candy store and a Payless Shoes store. Everything else is gone and Burlington is having a 60% off sale on the whole store. I thought about a sheet set... can you imagine that!!!! Like I don't have enough to pack!!! I just laughed and we went to the hotel got ready to go swimming and down to eat.
At dinner time I fed she pureed avocado and mixed berry applesauce between bites she ate corn chips and drank a little more then 2oz. of water. We also went swimming and she is doing great swimming the length of the pool several times with her water wings on.
Tuesday, July 14, 2009
Day 26
Today Alisha ate prunes and yogurt for breakfast. I think that may become a tradition and very the flavors of yogurt and throw in some pancakes and waffles every once in a while. She also ate potatoes with cheese and peaches and later she had some broccoli with cheese and avocado.
She is doing really well and the speech person fed her some chips and cookies tenderly called crunchies at the center to see how she does. Alisha did a wonderful job and all the doctors and her feeding therapist will talk tomorrow and decide how we are going to move foreword. We are doing great!!! I'm sooo excited!! I would love for them to transition some crunchies!! That is all that I was ever able to get her to eat at home. She was never able to to eat ice cream, yogurt, baby food or anything in that consistency. They have wonderfully filled in that void for her and it feels so freeing to know that she can eat so many things from the grocery store anywhere we go!!! I love that she is drinking her Nutren 2.0 and getting all of her calories by mouth on most days. I'm just sooo grateful for this wonderful program and how nice they are to us and all of the friendships that we have made here!!
I am sad that this is Larraine's last week at the center. She is the first Mom I met here and we really hit it off. There are so many Awesome Mom's that I have met I really hope that we stay connected. Seriously face book, emails and blogs.. it really shouldn't be hard. ;)
Today Mataya had her first very mild "I'm bored" day!!!! I am sooo proud of her!!!!! She has been sooo awesome this whole trip so far. She makes everything so fun!!! She's crazy!! ;) I told her today that as soon as she finishes reading Matilda that we will go to the book store and pick out another book to rotate in with her video games.. Anyway, it's time for dinner.
Wishing everyone a really great day!!!
Heather.
She is doing really well and the speech person fed her some chips and cookies tenderly called crunchies at the center to see how she does. Alisha did a wonderful job and all the doctors and her feeding therapist will talk tomorrow and decide how we are going to move foreword. We are doing great!!! I'm sooo excited!! I would love for them to transition some crunchies!! That is all that I was ever able to get her to eat at home. She was never able to to eat ice cream, yogurt, baby food or anything in that consistency. They have wonderfully filled in that void for her and it feels so freeing to know that she can eat so many things from the grocery store anywhere we go!!! I love that she is drinking her Nutren 2.0 and getting all of her calories by mouth on most days. I'm just sooo grateful for this wonderful program and how nice they are to us and all of the friendships that we have made here!!
I am sad that this is Larraine's last week at the center. She is the first Mom I met here and we really hit it off. There are so many Awesome Mom's that I have met I really hope that we stay connected. Seriously face book, emails and blogs.. it really shouldn't be hard. ;)
Today Mataya had her first very mild "I'm bored" day!!!! I am sooo proud of her!!!!! She has been sooo awesome this whole trip so far. She makes everything so fun!!! She's crazy!! ;) I told her today that as soon as she finishes reading Matilda that we will go to the book store and pick out another book to rotate in with her video games.. Anyway, it's time for dinner.
Wishing everyone a really great day!!!
Heather.
Monday, July 13, 2009
Day 25
Today....... Alisha weighed 30 3/4 pounds. She ate prunes and yogurt, broccoli with cheese and sweet potatoes with turkey. I can't remember what else she at the center today. I know that I was talked to about feeding her more pureed things and less baby food.. Sooooo I gave her pureed chili and baby food green beans.
I have had hives on my upper arms and calves for a couple of weeks.... lets just say it would have been more cost effective to buy cortisone cream by the keg!! I think I have either a new allergy or a new reaction to an old one.. Anyway I got a cortisone shot, Gadista pills, zyrtec and tusty benadryl cream... They also made me promise to get a new allergy screening when I get home. For now though if not tonight then some night soon I should be able to sleep!!! Thanks s0 much for the help Pam!!! We were out too late at the urgent care and two pharmacy's so Alisha didn't have enough time to drink all of her milk. So we are going to have to run her pump tonight.. Somehow the day feels less victorious when we end it with the feeding pump. It is still nice to have a safety net.
News from the home front... Jeff's Grandma is now home on hospice. She has been ready for a Long time although she has been reasonably healthy. She was a friend of my grandma or at least they had a friend in common. I have always liked being with his grandma and family!! I'm glad that Jeff gets to be with his sister and family...
I have had hives on my upper arms and calves for a couple of weeks.... lets just say it would have been more cost effective to buy cortisone cream by the keg!! I think I have either a new allergy or a new reaction to an old one.. Anyway I got a cortisone shot, Gadista pills, zyrtec and tusty benadryl cream... They also made me promise to get a new allergy screening when I get home. For now though if not tonight then some night soon I should be able to sleep!!! Thanks s0 much for the help Pam!!! We were out too late at the urgent care and two pharmacy's so Alisha didn't have enough time to drink all of her milk. So we are going to have to run her pump tonight.. Somehow the day feels less victorious when we end it with the feeding pump. It is still nice to have a safety net.
News from the home front... Jeff's Grandma is now home on hospice. She has been ready for a Long time although she has been reasonably healthy. She was a friend of my grandma or at least they had a friend in common. I have always liked being with his grandma and family!! I'm glad that Jeff gets to be with his sister and family...
Sunday, July 12, 2009
Day 24
Today Alisha drank 8oz. of milk during sacrament meeting. Very awesome because I didn't sleep very well at all. So I was up late this morning and didn't have time to feed her before we left but that takes care of about a third of her drinking.. After church Alisha ate green beans and peaches mixed with rice cereal. Then she drank a lot more. For her next meal Alisha ate mixed with silk milk and mixed berry apple sauce. She like the avocado it was her first time having that. I feel that we will soon be feeding her enough foods that I won't know how many she has eaten .. It is to the point that if it is food and I can get to pancake batter consistency then I think Alisha will eat it..
Failure to Launch was on again today. Just strikes me as funny..
Today I exchanged more cell phone and email information with ladies at church. Very nice ladies!!! I know that I'm going to miss everyone that I have met here and that we can stay in contact. The girls and I had fun playing a few rounds of Jelly Bean Jumble. I was able to get sandwiches made for tomorrow before 10:00pm so I count this as a really good day!! It's the simple things..
Failure to Launch was on again today. Just strikes me as funny..
Today I exchanged more cell phone and email information with ladies at church. Very nice ladies!!! I know that I'm going to miss everyone that I have met here and that we can stay in contact. The girls and I had fun playing a few rounds of Jelly Bean Jumble. I was able to get sandwiches made for tomorrow before 10:00pm so I count this as a really good day!! It's the simple things..
Saturday, July 11, 2009
Day 23
Today.. (truly today... yea!!! I'm caught up with the blog!!!) Alisha ate yogurt and applesauce the next meal she ate carrots and green beans then she ate pureed pancakes mixed with vanilla silk milk and blueberry applesauce and peaches. The blueberry is all that was new today..
I was lacking one meal and I will have to run her pump for the first time in four days because today she didn't drink enough of her "milk"
As for adventures... We went to Target in Glendale for the third time... It's starting to feel familiar.. which is nice.. that there are few things that feel that way. We got a insulated lunch box and a couple of food containers with freezer containers.. because we have GOT to be able to take this show on the road!!!! Then it took me quite a while to find but definitely worth it!!! WE went to Miller's Gluten Free Bakery!!! I thought we would have been there long before now!!! Too
busy with so many other trips to the store for just a few things at a time because that is all that I'm able to think about right now. Anyway, it is a lovely store and we had such a great time and we got sandwich bread and another cheesy wonderful bread that I can't remember the name of but it is soooo good!! We also got two cupcakes!!! That was a rare treat!! Plus some frozen chocolate chip cookie dough.. It will be fun to make cookies with the girls.. Not something that we do often but it's something that brings more of that cozy home feeling.. I'm missing some of that.. It's getting kinda a little harder knowing that this is next week almost all of my moms family is getting together at the family lodge.. I really wanted to see everybody there are a lot of new babies this year. I can't remember a summer that I haven't gone since I was five.. ANYWAY IF I have to
choose I would hands down choose to be here and make more progress with Alisha.. I love everybody and I miss you all!!!
Alisha is just under 20 new foods at this point I think she will eat anything that is a reasonable food and can be pureed.. I just say "open" and follow the protocol.. IT WORKS!!!! I'm soo grateful for this program!!! By the way "Failure to Launch" came on TBS today and I thought that was really funny!!! I text one of the moms and I watched it!! :0)
I was lacking one meal and I will have to run her pump for the first time in four days because today she didn't drink enough of her "milk"
As for adventures... We went to Target in Glendale for the third time... It's starting to feel familiar.. which is nice.. that there are few things that feel that way. We got a insulated lunch box and a couple of food containers with freezer containers.. because we have GOT to be able to take this show on the road!!!! Then it took me quite a while to find but definitely worth it!!! WE went to Miller's Gluten Free Bakery!!! I thought we would have been there long before now!!! Too
busy with so many other trips to the store for just a few things at a time because that is all that I'm able to think about right now. Anyway, it is a lovely store and we had such a great time and we got sandwich bread and another cheesy wonderful bread that I can't remember the name of but it is soooo good!! We also got two cupcakes!!! That was a rare treat!! Plus some frozen chocolate chip cookie dough.. It will be fun to make cookies with the girls.. Not something that we do often but it's something that brings more of that cozy home feeling.. I'm missing some of that.. It's getting kinda a little harder knowing that this is next week almost all of my moms family is getting together at the family lodge.. I really wanted to see everybody there are a lot of new babies this year. I can't remember a summer that I haven't gone since I was five.. ANYWAY IF I have to
choose I would hands down choose to be here and make more progress with Alisha.. I love everybody and I miss you all!!!Alisha is just under 20 new foods at this point I think she will eat anything that is a reasonable food and can be pureed.. I just say "open" and follow the protocol.. IT WORKS!!!! I'm soo grateful for this program!!! By the way "Failure to Launch" came on TBS today and I thought that was really funny!!! I text one of the moms and I watched it!! :0)
Day 22
Today Alisha weighed 30.12 pounds and is now drinking three ounces between meals.. because her meals now total one and a half ounces. yea!! Alisha ate pureed Tuna today.. We have to get meats and other proteins. She already excepts fruit and veggies and now proteins.. we can spread out her varieties.. I'm sure she will be fine with that. I have had very much less time in the family lounge and I miss the moms.. I feed Alisha ever two hours. it takes about twenty minutes then twenty minutes after that I take her into her feeding room to have her drink. that takes about ten minutes.. it tends to take ten minutes to get her to and from the play room so I have about another hour before we start again. This is really wonderful practice for us because Brittney talks to me after feedings and sometimes during and gives me more guidelines or reminds me of ones that I'm letting slip.. There is a lot to do.. Brittney watches threw the one way glass so she sees without Alisha seeing.. There are other doctors and therapists that watch from time to time. plus the moms watch a lot while the feeding therapist feed to and watch how well their kids are doing and also watch everything the feeding therapists do because very soon it will be your turn again.. When we live all turns will be your turns..
Today was also the parent meeting.. we have them before the weekend because it helps with moral and it is fun to be all together.. Anyway we were talking and laughing that some of us are still doing too much for our kids... that topic always seems to last a while.. Some of the moms justify and we all laugh together.. a while into it this time I asked if they have seen the movie "Failure to Launch".. I said seriously make the popcorn and watch it.. We all laughed really hard.. One mom asked me to right down the title.. I also wrote down "Penelope" We don't need to give our kids any optional handicaps!!! :) Honestly I'm not perfect at this either... I always tell my kids how old they are.. for them to know that they need to suck it up sometimes but also so that I hear it.. I think about other kids mine and my Friend's kids and think about what they were able to do at that age.. keep the expectations up.. no optional handicaps!! ;)
Today was also the parent meeting.. we have them before the weekend because it helps with moral and it is fun to be all together.. Anyway we were talking and laughing that some of us are still doing too much for our kids... that topic always seems to last a while.. Some of the moms justify and we all laugh together.. a while into it this time I asked if they have seen the movie "Failure to Launch".. I said seriously make the popcorn and watch it.. We all laughed really hard.. One mom asked me to right down the title.. I also wrote down "Penelope" We don't need to give our kids any optional handicaps!!! :) Honestly I'm not perfect at this either... I always tell my kids how old they are.. for them to know that they need to suck it up sometimes but also so that I hear it.. I think about other kids mine and my Friend's kids and think about what they were able to do at that age.. keep the expectations up.. no optional handicaps!! ;)
Day 19
Today was a weird day..Alisha didn't even say that she needed to go to the bathroom.. and then just wet on the floor in the playroom..
At home she ate Motts applesauce adn pureed green beans and four ounces of "milk"
There was a weather warning on TV and they were showing a close up on the map and I didn't know the area... (still use GPS all the time.. or almost always..) There were tornato sightings and I was trying so hard looking at it for anything to look familliar.. Where is it.... Where am I... it was in New York someplace..
At home she ate Motts applesauce adn pureed green beans and four ounces of "milk"
There was a weather warning on TV and they were showing a close up on the map and I didn't know the area... (still use GPS all the time.. or almost always..) There were tornato sightings and I was trying so hard looking at it for anything to look familliar.. Where is it.... Where am I... it was in New York someplace..
Day 21
Today Alisha's new foods are pureed strawberries, prunes, waffles and pancakes. She also drank four ounces after every meal.
After being at the center she ate pancakes with vanilla silk milk and carrots and drank all of her day time "milk" and night time "milk and this also makes the third night of no pump!!! yea!!
I did get too excited and didn't measure her food.. and I gave her too much and she threw up.. I cleaned her up and then I fed her again. What a great little girl!!
After being at the center she ate pancakes with vanilla silk milk and carrots and drank all of her day time "milk" and night time "milk and this also makes the third night of no pump!!! yea!!
I did get too excited and didn't measure her food.. and I gave her too much and she threw up.. I cleaned her up and then I fed her again. What a great little girl!!
Day 20
Today Alsiha weighed 30.9 pounds.. (she was down some weight because she didn't get her pump feeding over night.) Alisha ate Pureed eggs with cheese, potatoes, yogurt, carrots, and applesauce. Four ounces of "milk" after each feeding. At home she drank the rest of her daytime "milk" and all of her night time "milk" She drank all of it with no problems!! We went to the store again and got a "non sucking" sippy cup.. Looks like a tall coffee cup with lid except it's blue and made by Playtex. She did great and even ate blueberry yogurt!!
I forgot her magic pillow at the center!!!
She asked me several times about it... I kept distracting her I even said they could watch TV as long as she stayed laying down. Then after the sixth time.. I confessed to forgetting it at the center...I told her that we are going back to get it in the morning and that she can sleep with her special monkey blanket (her primary teacher in CA made for her. It has minkish fabric on one side and on the other side it has this really fun flannel with sock monkeys on the other and a bell sewed on one corner.. and "when the bell rings..that's her primary class saying.. we love you.." ) She really sucked it up and said "okay" we got the monkey blanket and she put it flannel side up on top of the hotel pillow and went to sleep!!! Awesome!!! Thanks so much Chantal!!!
She asked me several times about it... I kept distracting her I even said they could watch TV as long as she stayed laying down. Then after the sixth time.. I confessed to forgetting it at the center...I told her that we are going back to get it in the morning and that she can sleep with her special monkey blanket (her primary teacher in CA made for her. It has minkish fabric on one side and on the other side it has this really fun flannel with sock monkeys on the other and a bell sewed on one corner.. and "when the bell rings..that's her primary class saying.. we love you.." ) She really sucked it up and said "okay" we got the monkey blanket and she put it flannel side up on top of the hotel pillow and went to sleep!!! Awesome!!! Thanks so much Chantal!!!
Day 18
Today Alisha weighed 31.11 pounds. She ate her firsted Pureed food peaches, bananas, pears, ect. And she drank three ounces of "milk" after all four meals. When we were home she drank threee ounces "milk" and later another three ounces water.. She had a wonderful day!!! Because she drank so much I had to give her meds a lot later then normal. This is a very tireing life actually...Wonderful and miraculas but it also takes a lot too... anyway.. I layed down for just a second when I was syringing her night time meds and woke up about a few hours later... Alisha was looking really pretty good... I tested her blood sugar and she was at 108.. Hmm.. so I got into my bed and tested her again two hours later and she was at 97. So with her morning meds I mixed in some glucose liquid shot so that she wouldn't continue to drop until she ate "breakfast" at the center..
Day 17
Alisha "read" the scripture and Mataya gave the talk. There are about 20 in primary in Jr and Sr primary counting all the adults. So to ask the visiting kids that aren't event the same class give the scripture and talk not so out of the ordinary besides being very welcoming the girls love it. It was really fun for them.. Mataya's talk was about how helping in your family even doing little things that kids can do makes a really big difference in your family. And being the awesome kid that she is... she was able to talk briefly about helping with Alisha and her milk drinking the day before.
It was such a wonderful day!!! I love this ward! I know that I'm so going to miss it here. At the same time watching Chris Vaughn (King of Queens and Paul Blart Mall Cop) is about the closest I get to being with my husband. I'm missing home and friends and family and game nights a lot too.
Drinking her "milk" means that she doesn't have to use her feeding pump because she is now drinking it herself!!!!
It was such a wonderful day!!! I love this ward! I know that I'm so going to miss it here. At the same time watching Chris Vaughn (King of Queens and Paul Blart Mall Cop) is about the closest I get to being with my husband. I'm missing home and friends and family and game nights a lot too.
Drinking her "milk" means that she doesn't have to use her feeding pump because she is now drinking it herself!!!!
Day 16
Alisha ate baby food green beans and sweet potatoes with turkey and then later carrots and applesauce. Today was the first day that Alisha put on her orthotics all by herself!!! It's very hard for her to pull the plastic apart for her to get her foot in.. She always puts on her socks and shoes.
Today was also a kinda hard day or at least it had a hard time in it...
I was having Alisha drink her "milk" (high calorie formula) She was smirking at me and refusing to drink it. I lost my patients and I walked away and left her in her high chair and laid down on my bed. I felt awful but I felt even worse when Mataya came in and softly rubbed on my shoulders. She's not supposed to have to be the grown up!!! She told me that everything is fine. Then she walked out to the kitchen area and asked Alisha in a very quiet almost magic forest fair voice. "Do you want a happy mommy or a sad mommy?" It about makes me cry thinking about it. Then Alisha said "Happy Mommy." Then Mataya said "Then you need to stop being mean to her and drink you milk" All of this was still in the magic forest fairy voice. Then Mataya started playing a game with Alisha with her magic pillow and they were laughing and having a great time... it was way more fun and silly.
I'm so glad that I have such great daughters... Alisha's "milk" all three ounces was finished in about five minutes...
Today was also a kinda hard day or at least it had a hard time in it...
I was having Alisha drink her "milk" (high calorie formula) She was smirking at me and refusing to drink it. I lost my patients and I walked away and left her in her high chair and laid down on my bed. I felt awful but I felt even worse when Mataya came in and softly rubbed on my shoulders. She's not supposed to have to be the grown up!!! She told me that everything is fine. Then she walked out to the kitchen area and asked Alisha in a very quiet almost magic forest fair voice. "Do you want a happy mommy or a sad mommy?" It about makes me cry thinking about it. Then Alisha said "Happy Mommy." Then Mataya said "Then you need to stop being mean to her and drink you milk" All of this was still in the magic forest fairy voice. Then Mataya started playing a game with Alisha with her magic pillow and they were laughing and having a great time... it was way more fun and silly.
I'm so glad that I have such great daughters... Alisha's "milk" all three ounces was finished in about five minutes...
Day 15
This was our extra day off. We had made plans with a mom who has been here before. This is her son's second trip to work more on chewing instead of pureed foods. Anyway, she had been to New York before and invited my girls and I to go with her. Very nice!! Alisha ate 1/2oz. sweet potatoes and 1/2oz sweet potatoes with turkey... thinking about later I think I could have picked two foods that were more different. She did a great job eating it though while we watched "Horton Hears a Who" We love the rope bridge part along with many others.
We left to go meet our NY visiting mom her two kids and her mother from England. We took a bus to New York on the way there the bus was having problems so they had another bus come up behind us and we switched. The sad part about that is that I grabbed everything except Alisha's really cute yellow hoodie with the flowers..The rest of the trip was great!! After that bus we got two cabs to China Town. We spent a while on Canal St. Tons of purse shopping. I guess that I'm picky... I'm also not really into purses... I did buy some postcards and a toy double decker bus. We had fun with everything that we did. We also went to ground zero. It gave me chills to be there. I bought a couple of booklets. We had lunch on the 2nd floor of a Burger King. I packed lunch Taya and I had shakes and soda with lunch and I syringed Alisha's "lunch."
Along the way I also bought a total of 18 New York post cards because I haven't found any New Jersey ones and a New York hat. Then we went on the Stanton Island Fairy. That was so much fun for the kids and so great to see the Statue of Liberty. I took tons of pictures. It was hard to believe that I was actually seeing it. The Brooklyn Bridge was pretty impressive too. We had a great time on top of a double decker tour bus.. very funny tour guide!! Then the kids had a great time running and playing at Central Park. That's a sentence that I never thought I would write. The only time I hear about Central Park involves a speratic murder or a movie location. So I always thought that they really dressed it up for movies because nobody gets murdered in pretty places right?!?!?.. for anybody as silly as me (let me pretend these people exist!!) I will tell you that it is gorgeous pretty all the time and it was wonderful to see and talk about the Elf movie seen where they sing to create more Christmas spirit. Then the kids just ran around on the huge rocks and grass and tossed rocks in the pond and it just looks almost magical all the time.. I wish I took more pictures there... Then we went to time square. Very fun to be there!! I think NY reminds me of SF except a higher feeling of energy. There were very fun very helpful people.
Then we got a bus back to Paterson. All totaled this day cost $46.00... I'm rather impressed. We said goodbye til Monday and the girls and I drove back to the hotel.....ZZzzzzZZZZzzzZZZ
We left to go meet our NY visiting mom her two kids and her mother from England. We took a bus to New York on the way there the bus was having problems so they had another bus come up behind us and we switched. The sad part about that is that I grabbed everything except Alisha's really cute yellow hoodie with the flowers..The rest of the trip was great!! After that bus we got two cabs to China Town. We spent a while on Canal St. Tons of purse shopping. I guess that I'm picky... I'm also not really into purses... I did buy some postcards and a toy double decker bus. We had fun with everything that we did. We also went to ground zero. It gave me chills to be there. I bought a couple of booklets. We had lunch on the 2nd floor of a Burger King. I packed lunch Taya and I had shakes and soda with lunch and I syringed Alisha's "lunch."
Along the way I also bought a total of 18 New York post cards because I haven't found any New Jersey ones and a New York hat. Then we went on the Stanton Island Fairy. That was so much fun for the kids and so great to see the Statue of Liberty. I took tons of pictures. It was hard to believe that I was actually seeing it. The Brooklyn Bridge was pretty impressive too. We had a great time on top of a double decker tour bus.. very funny tour guide!! Then the kids had a great time running and playing at Central Park. That's a sentence that I never thought I would write. The only time I hear about Central Park involves a speratic murder or a movie location. So I always thought that they really dressed it up for movies because nobody gets murdered in pretty places right?!?!?.. for anybody as silly as me (let me pretend these people exist!!) I will tell you that it is gorgeous pretty all the time and it was wonderful to see and talk about the Elf movie seen where they sing to create more Christmas spirit. Then the kids just ran around on the huge rocks and grass and tossed rocks in the pond and it just looks almost magical all the time.. I wish I took more pictures there... Then we went to time square. Very fun to be there!! I think NY reminds me of SF except a higher feeling of energy. There were very fun very helpful people.
Then we got a bus back to Paterson. All totaled this day cost $46.00... I'm rather impressed. We said goodbye til Monday and the girls and I drove back to the hotel.....ZZzzzzZZZZzzzZZZ
Tuesday, July 7, 2009
Day 14
We got home the the Center and went grocery shopping AGAIN!!! I can never stop to write a list or think and I can't remember things when I'm at the store or anywhere else but I knew that I did need more lunch stuff.. So away we go.. I'm sure we are at the store three to four times a week.... Anyway, after we get home I'm really really tired... I know that we are going to be walking a lot tomorrow.. So we have a movie night together it was a nice normal home~E night.. I loved it.
Day Ten
Alisha ate her water and apple sauce from 8:50 to 9:08. Then we got ready for church and I love going to church here. There are so many trees-- the drive is so pretty. The whole place is just gorgeous!! They have great people!! There are about 20 or less sisters every week and I have way more then 10 phone numbers from people who asked that I call them if we need anything!! It is just such a wonderful feeling!! I feel a part of their ward.
I love that they have pictures of every sister with her name on the bulletin board by the relief society room and inside the room on a side wall is a blown up laminated map with a typed label for every sister with her name etc. on it and attached to the map according to where they live!!! I have wanted that kind of a set up for every ward that I've been in. It's a huge help with names and faces and who you live by and I think it helps to have more of a family feeling.
After church we came home and ate. Alisha ate water and applesauce from 2:30 to 2:55 and we left to go see Michele, Skylar and their family. Her family lives in a town called Totawa... I think it sounds fun like a valley girl with a speech impediment!! ( yeah, it really doesn't take much for me.) WE had a wonderful time!!! Her family was so wonderful we talked like old friends and it was such a great time for us!! Beyond Hospitality!!! Wonderful family!!
Thanks again for having us!!!
I love that they have pictures of every sister with her name on the bulletin board by the relief society room and inside the room on a side wall is a blown up laminated map with a typed label for every sister with her name etc. on it and attached to the map according to where they live!!! I have wanted that kind of a set up for every ward that I've been in. It's a huge help with names and faces and who you live by and I think it helps to have more of a family feeling.
After church we came home and ate. Alisha ate water and applesauce from 2:30 to 2:55 and we left to go see Michele, Skylar and their family. Her family lives in a town called Totawa... I think it sounds fun like a valley girl with a speech impediment!! ( yeah, it really doesn't take much for me.) WE had a wonderful time!!! Her family was so wonderful we talked like old friends and it was such a great time for us!! Beyond Hospitality!!! Wonderful family!!
Thanks again for having us!!!
Day 13
Alisha weighed 31 pounds. Every two hours, after every meal, Alisha drank 90mls of nutren --this is a high calorie drink that usually would go into her pump. The most that I have ever been able to pump into her and have her be able to keep it down was 75mls per hour. The math works for spreading her meals out that she should be able to have more but it never actually worked out that way. This is amazing!!
Later at home Alisha had five bites of sweet potatoes she refused all the rest of the bites!! She was so tired!!!! I shouldn't have had a feeding so close to her bedtime. That was totally my fault.
Later at home Alisha had five bites of sweet potatoes she refused all the rest of the bites!! She was so tired!!!! I shouldn't have had a feeding so close to her bedtime. That was totally my fault.
Day 12
Today Alisha weighed 31lbs. Her baby food was only diluted with 25% water. She can eat apple sauce, green beans, carrots, sweet potatoes and DRINK her Nutren 2.0!!!! About 20 minutes after her meals that at this point are only 2hours apart with a 1/2 oz. of one food and a 1/2 oz. of another Alisha drank 65mls of her Nutren 2.0 from a cup.
We had another parent meeting today. We talked about all the progress that our kids have made and how we made it through the weekend. Towards the end of the meeting we talked about having our next meeting on Thursday because we were all having Friday off because of the 4th of July. I was kinda sad about missing a day because that is what we are here for. Then I quickly got to thinking about being able to sleep in a little and not HAVING to be someplace.. I thought one day less isn't that bad... Later when I was talking to another mom in the observation room she brought up about how she was feeling about things.. That she was responsible for feedings alone for an extra day. Hmmm. didn't think about it like that... dum dummm dummmm!!!! (thunder in the back ground..) :) It will be fine..
Later today at home she ate 3 Doritos chips and drank 4oz. of Nutren in one sitting!!
We had another parent meeting today. We talked about all the progress that our kids have made and how we made it through the weekend. Towards the end of the meeting we talked about having our next meeting on Thursday because we were all having Friday off because of the 4th of July. I was kinda sad about missing a day because that is what we are here for. Then I quickly got to thinking about being able to sleep in a little and not HAVING to be someplace.. I thought one day less isn't that bad... Later when I was talking to another mom in the observation room she brought up about how she was feeling about things.. That she was responsible for feedings alone for an extra day. Hmmm. didn't think about it like that... dum dummm dummmm!!!! (thunder in the back ground..) :) It will be fine..
Later today at home she ate 3 Doritos chips and drank 4oz. of Nutren in one sitting!!
Day 11
Today Alisha weighed 31lbs!! She also ate her baby food carrots and green beans only diluted to 50%!! Alisha also drank her formula!!! That is a total first!!! She drank 20mls after her first feeding and 30mls after the 2nd, and 65mls after the third!!!
Today was a great feeling day. I don't really believe in happenstance. Today I talked to two moms that happened to have some minor problems with areas that I had some experience and some hopefully short funny stories to go with it to make my life lessons stick.
It was good. I love it when it just feels good for everybody all around. I love it when we can talk and help each other going through this as a group is very helpful!!! I've been part of a few mommy web sites but as great as they have been for me they can't even touch what it feels like to literally sit around a table with all of these been-there-done-that parents!!! We laugh at some of the crazy adaptive things we have done for our kids.. and all the different kinds of spoons and things we have bought.. we all look at each other and laugh!!! (It's not the SPOON!!)
Today we were talking so much just having fun together that we didn't leave the observation room between feedings and we were already there two hours later when it was time for our kids to eat again. Very nice day. I very firmly believe that this therapy would not work if I read a book about it or even watched a how to video. I don't believe that it would work if we went three or even for times a week in my home town. I believe that it really takes making it be for your whole life for several weeks. This is wonderful!! I hope everybody keeps talking about this program because you never know all the people the person your talking to knows.
Thanks!!
Today was a great feeling day. I don't really believe in happenstance. Today I talked to two moms that happened to have some minor problems with areas that I had some experience and some hopefully short funny stories to go with it to make my life lessons stick.
It was good. I love it when it just feels good for everybody all around. I love it when we can talk and help each other going through this as a group is very helpful!!! I've been part of a few mommy web sites but as great as they have been for me they can't even touch what it feels like to literally sit around a table with all of these been-there-done-that parents!!! We laugh at some of the crazy adaptive things we have done for our kids.. and all the different kinds of spoons and things we have bought.. we all look at each other and laugh!!! (It's not the SPOON!!)
Today we were talking so much just having fun together that we didn't leave the observation room between feedings and we were already there two hours later when it was time for our kids to eat again. Very nice day. I very firmly believe that this therapy would not work if I read a book about it or even watched a how to video. I don't believe that it would work if we went three or even for times a week in my home town. I believe that it really takes making it be for your whole life for several weeks. This is wonderful!! I hope everybody keeps talking about this program because you never know all the people the person your talking to knows.
Thanks!!
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