Today was just US...
We had a great breakfast!! Then we did a quick clean up.. (my favorite kind) and started Alisha on her first feeding at "home."
We did the first feeding at 9:30 and ended at 10:02. Everything was going well and then Alisha threw up on bite number 26 of a 30 bite feeding.. I did a quick clean up and gave her some water to drink.. (yes, out of a regular cup.. I know I'm a butthead!!) then Alisha said she didn't want any more she was done. I said "Open." and I might as well have said "open sesame" instead because she stopped and opened her mouth. A little more mild protesting with no actual resistance and she finished her remaining four bites the rest of the feedings were as smooth as silk!!!
Then we watched cartoons.. :) It felt great to be mellow and not feel that we had soo much schedule inside of our schedule. Then we fed her again at 11:10 until 11:33 Mataya and I had our lunch between Alisha's bites.
We then drove around for about an hour trying to find a park that we were told about and then thought it would be a good time and we were close to Curious Cookie. They sell gf cookies and they sell tubs of cookie dough then we can take them "home" and bake them. We drove around and I didn't find either place. When I came from one direction on the turnpike the GPS said one parking lot then when I came back from the other direction it said the next parking lot. I read every sign and looked for the right suite number and I still couldn't find it so we went back and we fed Alisha again at 1:23 to 1:45.
Then we went for a walk outside and stopped off at the ice rink and watched part of a hockey game. It was really fun!!! Alisha loved it!!
We eventually got cold and ran around on the grass and raced and laughed and took some pictures and had fun together until 3:45 when we fed Alisha until 4:05. We Skyped during that feeding so that Grandma, Papa and Daddy could see Alisha eat. It was really nice to see them.
Afterwards we stayed in and the girls just played together. They don't get much down time to just be together. Then we fed Alisha at 5:25 to 5:47. That is five feedings thirty bites per feeding bringing her grand total for the day to be one hundred fifty bites!!!!!!!! Way past any all time record for her!! AWESOME doesn't cover it!!!
Tuesday, June 30, 2009
Day 8.
Today was all Mommy all the time.
I fed her at every feeding time. Brittney was so nice and always answers my questions and really loves what she does!! Brittney fed Alisha the fist five or so bites on the first feeding just to kind of cement the rules and also I think to give me one more look at it before it was my turn. Alisha did wonderfully!!!! I was still waiting for that "spunky streak" but it never kicked in. I was so excited that the magic would last even when I was feeding her!! GREAT!!! Because we need to do it alone over the weekend. We checked out a high chair and we bought some special feeding toys for Alisha. She picked a toy that is like My Little Pony meets Polly Pocket. You can switch their hair and skirts and wings etc. It is wonderful!!
We also got a few little things like colored pencils and Phase 10 and dice for Mataya for her beyond AWESOMENESS!!!!! Not one complain for a whole week!! Not one.. "When do we go home!!" She is loving all the time that we spend together cuddling up and reading together and watching TV she also likes to get up and dance and play her video games she is GREAT!! I also have to say that it was wonderful to be at a TARGET!!! Oh, Moms and TARGET!!! The Target at home is being expanded and I really miss it. I felt all most at home being there. LOL!! To say that we took our time would be an understatement!! There was a huge storm while we were there... We missed the whole thing in our glorious world of TARGET!!!
I fed her at every feeding time. Brittney was so nice and always answers my questions and really loves what she does!! Brittney fed Alisha the fist five or so bites on the first feeding just to kind of cement the rules and also I think to give me one more look at it before it was my turn. Alisha did wonderfully!!!! I was still waiting for that "spunky streak" but it never kicked in. I was so excited that the magic would last even when I was feeding her!! GREAT!!! Because we need to do it alone over the weekend. We checked out a high chair and we bought some special feeding toys for Alisha. She picked a toy that is like My Little Pony meets Polly Pocket. You can switch their hair and skirts and wings etc. It is wonderful!!
We also got a few little things like colored pencils and Phase 10 and dice for Mataya for her beyond AWESOMENESS!!!!! Not one complain for a whole week!! Not one.. "When do we go home!!" She is loving all the time that we spend together cuddling up and reading together and watching TV she also likes to get up and dance and play her video games she is GREAT!! I also have to say that it was wonderful to be at a TARGET!!! Oh, Moms and TARGET!!! The Target at home is being expanded and I really miss it. I felt all most at home being there. LOL!! To say that we took our time would be an understatement!! There was a huge storm while we were there... We missed the whole thing in our glorious world of TARGET!!!
Day 7
Today Alisha did GREAT!!!
I was very thankful for that because today was my first training day of feeding her with all of the correct protocol. I have been watching and video taping for me and for reminders at home and to watch the transformation is wonderful!!! (This is not DIY the only question that you are not allowed to ask me is.. "Can I have a copy of your video?")
I was nervous that Alisha's twisted humor would kick in and that she would think that it would be funny to refuse bites from me just to refuse them with that twinkle in her eye. Her preschool teachers say that she is spunky.. Anyway, Alisha did a FABULOUS job!!! I was sooo excited!!!! Odd to know that you are being watched through one way glass but.... She did AWESOME!!!
I was very thankful for that because today was my first training day of feeding her with all of the correct protocol. I have been watching and video taping for me and for reminders at home and to watch the transformation is wonderful!!! (This is not DIY the only question that you are not allowed to ask me is.. "Can I have a copy of your video?")
I was nervous that Alisha's twisted humor would kick in and that she would think that it would be funny to refuse bites from me just to refuse them with that twinkle in her eye. Her preschool teachers say that she is spunky.. Anyway, Alisha did a FABULOUS job!!! I was sooo excited!!!! Odd to know that you are being watched through one way glass but.... She did AWESOME!!!
Day 6..
Today Alisha weighed 31.6 pounds!! Yea!!
The great part of today is that Alisha had no water feedings today!!! Every feeding was 75% diluted apple sauce!! She did a great Job!!!
The not so great part... Alisha has been having a lot of accidents at the feeding center and they were talking to me one by one and it really kinda felt like they were trying to wear me down or something.. I also happen to be Skyler's Mom and all that that has ever included.. So whatever.. They wanted me to bring Alisha in pull ups.. I thought that was ridiculous!! she has been potty trained for a long time and has very few accidents. They were talking to me about all the changes in her life lately and so pull ups made sense to them. I said I was willing to bring in extra clothes but no pull ups.. She needs to clearly know what is expected of her. In a ways it was kinda funny when the third and Fourth staff members came up to talk to me. I bet they were wondering why I was smiling at them when we were talking about wet pants and pull ups.. I just wasn't having it. How about keeping one thing consistent? Really, she still needs to be cleaned up anyway they just bag her clothes and send then home with me and I end up with the extra work and it's worth it to me. Alisha was also there for some of these conversations.. Alisha was also having accidents at the hotel. I told her that if she had clean pants she could stay up til bed time but if she didn't she was going straight to bed. Some staff seemed to think that wasn't fair to her. She had not needed any of her extra clothes after she was sent to bed.
Another thing was that we had a goal setting meeting. Mostly it was really great I was just kind of disappointed with.. I was asked what I thought was a reasonable goal for Alisha by the time that we leave. "I said well, it would be really great if she could eat a sandwich." One of the doctors just hung his head in disbelief. I felt frustrated. I didn't know exactly what to expect. We haven't done this before and I figured Alisha eats more kinds of things then the kids that were on their list of examples on their site so to me it made sense that she should eat better then some of them when we leave too. Then I was told that their goal for Alisha was to eat six to eight different baby food textured foods. That was a kick in the guts. That is a huge difference. Anyway, Then I was asked to list foods that Alisha eats. Crackers, cheese, rice, broccoli, peas, green beans, popcorn, bread. All of these things are in very very very small pieces. Two tablespoons of rice would be like Thanks Giving for Alisha. They asked me if she drinks I said she likes to drink ice water. She drinks quite a bit of it. I was asked how she drinks it. I said from a cup. Then I was asked if it was a sippy cup. "No, just a cup." "From an open cup?" "Yes, a cup." "Really, that takes quiet a bit of tongue work." "Really?" "yes, we'll have to see her drink water on Monday." I had been writing in her journal every night how much she drinks.. So I decided to wait for the surprise on Monday when she drinks water..
The great part of today is that Alisha had no water feedings today!!! Every feeding was 75% diluted apple sauce!! She did a great Job!!!
The not so great part... Alisha has been having a lot of accidents at the feeding center and they were talking to me one by one and it really kinda felt like they were trying to wear me down or something.. I also happen to be Skyler's Mom and all that that has ever included.. So whatever.. They wanted me to bring Alisha in pull ups.. I thought that was ridiculous!! she has been potty trained for a long time and has very few accidents. They were talking to me about all the changes in her life lately and so pull ups made sense to them. I said I was willing to bring in extra clothes but no pull ups.. She needs to clearly know what is expected of her. In a ways it was kinda funny when the third and Fourth staff members came up to talk to me. I bet they were wondering why I was smiling at them when we were talking about wet pants and pull ups.. I just wasn't having it. How about keeping one thing consistent? Really, she still needs to be cleaned up anyway they just bag her clothes and send then home with me and I end up with the extra work and it's worth it to me. Alisha was also there for some of these conversations.. Alisha was also having accidents at the hotel. I told her that if she had clean pants she could stay up til bed time but if she didn't she was going straight to bed. Some staff seemed to think that wasn't fair to her. She had not needed any of her extra clothes after she was sent to bed.
Another thing was that we had a goal setting meeting. Mostly it was really great I was just kind of disappointed with.. I was asked what I thought was a reasonable goal for Alisha by the time that we leave. "I said well, it would be really great if she could eat a sandwich." One of the doctors just hung his head in disbelief. I felt frustrated. I didn't know exactly what to expect. We haven't done this before and I figured Alisha eats more kinds of things then the kids that were on their list of examples on their site so to me it made sense that she should eat better then some of them when we leave too. Then I was told that their goal for Alisha was to eat six to eight different baby food textured foods. That was a kick in the guts. That is a huge difference. Anyway, Then I was asked to list foods that Alisha eats. Crackers, cheese, rice, broccoli, peas, green beans, popcorn, bread. All of these things are in very very very small pieces. Two tablespoons of rice would be like Thanks Giving for Alisha. They asked me if she drinks I said she likes to drink ice water. She drinks quite a bit of it. I was asked how she drinks it. I said from a cup. Then I was asked if it was a sippy cup. "No, just a cup." "From an open cup?" "Yes, a cup." "Really, that takes quiet a bit of tongue work." "Really?" "yes, we'll have to see her drink water on Monday." I had been writing in her journal every night how much she drinks.. So I decided to wait for the surprise on Monday when she drinks water..
Day 5..
Sometimes the morning hits like a ton of bricks!! We shop to get some more things that we need. We get home start the bed time routine and before ya know it we are doing it all again. Laundry was more fun though!! The girls thought it was neat to see what happens in a washing machine.
Today Alisha had more water in her spoon and then at a later feeding they gave her some baby food apple sauce (smoother then regular apple sauce) and diluted it with 75% water. Alisha always starts her feedings very happy she races her feeding therapist Brittney into the feeding room. When she was climbing up into her highchair and sat down she saw the applesauce mixture and said "OOohhhh nooo!!!! I don't want to eat soup!!" It was really funny!! Alisha started her feedings with spoons of water and then after a set she was offered the apple sauce. I think she refused her first couple of bites but then soon excepted all of the rest. She is a very polite protester she just turns her head and holds her lips tight together. No screaming.. I'm very grateful for that.
After Therapy we went back to Trader Joe's for more gf bread but they were out. So it was on to Whole Foods it is much further away but a beautiful drive!!!!! The weather has been wonderful. Not muggy at all and sometimes rain. Really great!! I'm counting it among our blessings!!!
Today Alisha had more water in her spoon and then at a later feeding they gave her some baby food apple sauce (smoother then regular apple sauce) and diluted it with 75% water. Alisha always starts her feedings very happy she races her feeding therapist Brittney into the feeding room. When she was climbing up into her highchair and sat down she saw the applesauce mixture and said "OOohhhh nooo!!!! I don't want to eat soup!!" It was really funny!! Alisha started her feedings with spoons of water and then after a set she was offered the apple sauce. I think she refused her first couple of bites but then soon excepted all of the rest. She is a very polite protester she just turns her head and holds her lips tight together. No screaming.. I'm very grateful for that.
After Therapy we went back to Trader Joe's for more gf bread but they were out. So it was on to Whole Foods it is much further away but a beautiful drive!!!!! The weather has been wonderful. Not muggy at all and sometimes rain. Really great!! I'm counting it among our blessings!!!
Monday, June 29, 2009
Day 4..
Today was the first day going to Saint Josephs Pediatric Feeding Center.
Alisha weighed in at 30 lbs 4oz. AWESOME!! She's been stuck at 27lbs. for too long and we have added a lot to her food to get that extra weight on her. In 24 hours she has 3 cans of Nutren 2.0 (500 calories ea.) the first two cans during the day are mixed with 1-2 tablespoons of cashew butter, half of an avocado, one scoop of Ultracare for Kids, and about 1/2 cup of silk milk. We use a Vita Mix blender and a Zevex ultralite infinity pump.
Today was great Alisha walked right into the play room and had a great time. At her feedings she had a spoon dipped in water and then later a spoon holding some water in it. Mostly getting her used to the protocol. Alisha did great!!!
The kind of not so great part is that they wanted me to feed Alisha something. So I tried to feed her a gluten-free animal cookie. I tried to get her to eat the face off thinking that she might think that it funny enough that she would at least make a good attempt. Meanwhile the doctors and feeding therapists are watching in the hallway through a one way mirror. I kept feeling like clearly what I do doesn't work or we wouldn't be here. They were trying to see her mouth and what she does to get a better baseline the what my home made DVD provided. I kept saying things like "I can still see his nose" or " I can still see his eye." While Alisha was taking such tiny bites that she'd make any super model look like a total binger!! After a while that had seen enough of what she does with her mouth to make a specialized plan for her. yea!!!
After therapy we did a lot of driving around looking for the Cost co. At home Costco is always a huge building with an "I'm a warehouse stripe around it" Not so much that way here. I kept driving around and around where the GPS said that it was located. I started feeling some of the frustration that I felt from Saturday. four about 15minutes I drove around the area where the store was. finally making what I promised myself to be my last pass I said to the back seat...
"Mataya, let me know if you can see a Costco.." (or we are going home and forget it!) She said it's right there... There were a couple of other stores with it that had way better signage and Costco wasn't listed on the big sign near the street either.. Anyway!!!!! So I park and just as soon as I do Alisha throws up all over the back seat!!! Rental car..lovely!! We have done this so many times that we have two car seats for Alisha so we can switch all of the fabric and seat belt pieces wash the others and still hit the next appointment. I have to admit here that we left her extra clothes at the feeding center and the extra car seat stuff and plastic bags were left in the hotel room in our rush out the door this morning.. Sooo... I wiped off her clothes pulled her black cotton pants legs up so the bottom hem of her pants were up to her hips.. ta daaahhaaaa shorts and we are shopping.. We saved tons on green beans and corn and a box of microwave popcorn and frozen chicken!!! Mataya and I picked out a couple of books that looked good and should be cheap entertainment for quite a span of time. We were about done when Alisha said that she needed to go potty.. Normally she gives me quite a bit of warning and is very good about the whole thing.. Not so much this time.. Glad I had everything in the front of the cart. I wiped her up kinda and the floor then helped Mataya finish up her book choices and headed for check out.. On the way up the main isle I made the mistake of saying to Alisha to lighten things up a bit. "We better get you out of here quick I bet you smell lovely." Then I had a hard time not laughing because just then the gust of wind from the front door hit us and I was thinking of all the people walking behind us... Then Alisha sits up higher on the back of the seat rest and starts calling out "who wants to smell my bum!!" Perfect ender to a perfect day. ;) It's days like this that practically make Mom's bullet proof!!!
Alisha weighed in at 30 lbs 4oz. AWESOME!! She's been stuck at 27lbs. for too long and we have added a lot to her food to get that extra weight on her. In 24 hours she has 3 cans of Nutren 2.0 (500 calories ea.) the first two cans during the day are mixed with 1-2 tablespoons of cashew butter, half of an avocado, one scoop of Ultracare for Kids, and about 1/2 cup of silk milk. We use a Vita Mix blender and a Zevex ultralite infinity pump.
Today was great Alisha walked right into the play room and had a great time. At her feedings she had a spoon dipped in water and then later a spoon holding some water in it. Mostly getting her used to the protocol. Alisha did great!!!
The kind of not so great part is that they wanted me to feed Alisha something. So I tried to feed her a gluten-free animal cookie. I tried to get her to eat the face off thinking that she might think that it funny enough that she would at least make a good attempt. Meanwhile the doctors and feeding therapists are watching in the hallway through a one way mirror. I kept feeling like clearly what I do doesn't work or we wouldn't be here. They were trying to see her mouth and what she does to get a better baseline the what my home made DVD provided. I kept saying things like "I can still see his nose" or " I can still see his eye." While Alisha was taking such tiny bites that she'd make any super model look like a total binger!! After a while that had seen enough of what she does with her mouth to make a specialized plan for her. yea!!!
After therapy we did a lot of driving around looking for the Cost co. At home Costco is always a huge building with an "I'm a warehouse stripe around it" Not so much that way here. I kept driving around and around where the GPS said that it was located. I started feeling some of the frustration that I felt from Saturday. four about 15minutes I drove around the area where the store was. finally making what I promised myself to be my last pass I said to the back seat...
"Mataya, let me know if you can see a Costco.." (or we are going home and forget it!) She said it's right there... There were a couple of other stores with it that had way better signage and Costco wasn't listed on the big sign near the street either.. Anyway!!!!! So I park and just as soon as I do Alisha throws up all over the back seat!!! Rental car..lovely!! We have done this so many times that we have two car seats for Alisha so we can switch all of the fabric and seat belt pieces wash the others and still hit the next appointment. I have to admit here that we left her extra clothes at the feeding center and the extra car seat stuff and plastic bags were left in the hotel room in our rush out the door this morning.. Sooo... I wiped off her clothes pulled her black cotton pants legs up so the bottom hem of her pants were up to her hips.. ta daaahhaaaa shorts and we are shopping.. We saved tons on green beans and corn and a box of microwave popcorn and frozen chicken!!! Mataya and I picked out a couple of books that looked good and should be cheap entertainment for quite a span of time. We were about done when Alisha said that she needed to go potty.. Normally she gives me quite a bit of warning and is very good about the whole thing.. Not so much this time.. Glad I had everything in the front of the cart. I wiped her up kinda and the floor then helped Mataya finish up her book choices and headed for check out.. On the way up the main isle I made the mistake of saying to Alisha to lighten things up a bit. "We better get you out of here quick I bet you smell lovely." Then I had a hard time not laughing because just then the gust of wind from the front door hit us and I was thinking of all the people walking behind us... Then Alisha sits up higher on the back of the seat rest and starts calling out "who wants to smell my bum!!" Perfect ender to a perfect day. ;) It's days like this that practically make Mom's bullet proof!!!
Thursday, June 25, 2009
Day 3..
Today is Sunday!! yea!!
I was up at 7:30 to get ready for church at 10:00... I thought that we would be there early and we could meet and talk with the bishop some and tell him about our gluten-free bread and things. I brought some in a sandwich baggie. Well, Alisha undressed herself three times and other things and we got there about ten minutes late.
We sat in the foyer for the first few minutes while they finished passing the Sacrament. Then I walked to the door and looked inside to see where we could sit. They had just invited the children to go sing to the fathers because it was Fathers Day. A lady named Geraldine was sitting on the back row. She kind of reminded me of my Aunt Janet. Forceful but in a kind of loving way. Anyway, she grabbed my arm and said "Your staying right??" Yeah, I'm just looking for a place to sit. She said well there are lots of places to sit. I said but the kids just got up I need to wait til they sit back down I don't want to take any body's place. She said well why don't you go sit by Zoe and the Bishop's wife? I said okay, who is the bishops wife.. She kinda chuckled to herself and said that's right you don't know. She described where they were sitting and she was holding my arm the whole time. I was laughing on the inside. She was awesome!! The primary children had just finished singing "I'm so glad when Daddy comes home" and we quietly sat with the bishops wife and Zoe then Alisha started to get up set. She wanted to go sing with the primary kids so I let her go and she loved it. They sang one more song that was not one that the children in our local primary practiced but Alisha sang some of the words and had a great time. There was even a man who helped Alisha stand with some of the shorter kids so we could see her up there. It was wonderful and they have a very beautiful chapel!!! All of the wood is stained a dark chocolate almost black and the thick moulding...but very simple at the same time It's just gorgeous!! Everything around the Church is so beautiful!! The chapel has to be less then 100 ft maybe 50 ft from the road but there are sooo many trees that you can't see the building at all. I had to turn around and come back to it. I have to say that Wayne is so pretty and so many trees too!!!! I could drive around for a day and just take pictures of the houses and trees!!! It was such a shock to me how people could live in such a pretty place and be so cranky!!! Honking at people doing nothing.. It was wonderful to go to church and be with sooo many nice people all in one place. A few of them gave me their phone numbers in case I needed anything. It was really nice. The girls played with some other kids for a little bit afterwards and it was wonderful.
There were wonderful Fathers day talks like none that I had ever heard before and it was a wonderful meeting. One sister talked about not having a father and her Mom raised five children on her own. She said that because of this she feels that she has a closer relationship with her Heavenly Father. In the same way that a person who is blind may have have a stronger sense of hearing. We also sang "Did you think to Pray" Very beautiful. Most the hymns remind me of family and times that we have had together which makes them all that more touching to me. They closed the meeting with every female member of the church walking up on the stand and singing "Love at Home" to all the men. It was beautiful and my most favorite time I can recall ever hearing that him sung.
I left the building with such a spiritual high..... It was so wonderful I know I for for absolute certainty that I'm going to miss this place very very much when it is time to go.
I was up at 7:30 to get ready for church at 10:00... I thought that we would be there early and we could meet and talk with the bishop some and tell him about our gluten-free bread and things. I brought some in a sandwich baggie. Well, Alisha undressed herself three times and other things and we got there about ten minutes late.
We sat in the foyer for the first few minutes while they finished passing the Sacrament. Then I walked to the door and looked inside to see where we could sit. They had just invited the children to go sing to the fathers because it was Fathers Day. A lady named Geraldine was sitting on the back row. She kind of reminded me of my Aunt Janet. Forceful but in a kind of loving way. Anyway, she grabbed my arm and said "Your staying right??" Yeah, I'm just looking for a place to sit. She said well there are lots of places to sit. I said but the kids just got up I need to wait til they sit back down I don't want to take any body's place. She said well why don't you go sit by Zoe and the Bishop's wife? I said okay, who is the bishops wife.. She kinda chuckled to herself and said that's right you don't know. She described where they were sitting and she was holding my arm the whole time. I was laughing on the inside. She was awesome!! The primary children had just finished singing "I'm so glad when Daddy comes home" and we quietly sat with the bishops wife and Zoe then Alisha started to get up set. She wanted to go sing with the primary kids so I let her go and she loved it. They sang one more song that was not one that the children in our local primary practiced but Alisha sang some of the words and had a great time. There was even a man who helped Alisha stand with some of the shorter kids so we could see her up there. It was wonderful and they have a very beautiful chapel!!! All of the wood is stained a dark chocolate almost black and the thick moulding...but very simple at the same time It's just gorgeous!! Everything around the Church is so beautiful!! The chapel has to be less then 100 ft maybe 50 ft from the road but there are sooo many trees that you can't see the building at all. I had to turn around and come back to it. I have to say that Wayne is so pretty and so many trees too!!!! I could drive around for a day and just take pictures of the houses and trees!!! It was such a shock to me how people could live in such a pretty place and be so cranky!!! Honking at people doing nothing.. It was wonderful to go to church and be with sooo many nice people all in one place. A few of them gave me their phone numbers in case I needed anything. It was really nice. The girls played with some other kids for a little bit afterwards and it was wonderful.
There were wonderful Fathers day talks like none that I had ever heard before and it was a wonderful meeting. One sister talked about not having a father and her Mom raised five children on her own. She said that because of this she feels that she has a closer relationship with her Heavenly Father. In the same way that a person who is blind may have have a stronger sense of hearing. We also sang "Did you think to Pray" Very beautiful. Most the hymns remind me of family and times that we have had together which makes them all that more touching to me. They closed the meeting with every female member of the church walking up on the stand and singing "Love at Home" to all the men. It was beautiful and my most favorite time I can recall ever hearing that him sung.
I left the building with such a spiritual high..... It was so wonderful I know I for for absolute certainty that I'm going to miss this place very very much when it is time to go.
Wednesday, June 24, 2009
day 2.5
I miss Jeff some... ;) The girls and I are having fun and I like it when we smile at each other with that almost sneaky twinkle in our eyes that says... How did we talk our family into letting us do this!!!! (This is a picture of Jeff Alisha and I in San Fransisco after one of Alisha's therapy appointments.. it was a really fun day. The older kids were in school)
P.S. This is what we look like Cyndi. ;) (she's the been there done that Mom from Texas)
Day 2...
Today we woke up and had a great complimentary breakfast downstairs. It felt really good to eat some real food again. Then we went up stairs and unpacked out of suitcases and into the closets and dressers. This is going to be our home might as well start off that way besides living out of a suit case sucks. The girls liked picking which drawers and just how they would put their clothes away and creating systems for things together. Where to put dirty laundry and it really helped to have some stucture like at home. Living closer with them will make that easier to maintain and it was fun to do together. It was practically like decorating the insides of their drawers with their familiar clothes. Feels more like home and ours.
Then we had the Enterprise car guy come pick us up and we got our car. They were very helpful and nice. There was a nice lady who was getting a car also and she started talking with the girls and just made everybody feel better. She was holding Alisha's hands and listening to her talk all about some really silly crazy stories that she likes to string together. Then Alisha started looking at her hands in the ladies hands and said your hands are not the same as mine.... your hands are black. The lady said yes, I have black skin. Then she held her hand palm side up under Alisha's hand and Alisha was so surprised that her hands were lighter on the palms. This was really strange to me because Alisha had gone to a very diverse preschool for two years. Alisha held the lady's hand palm up next to her palm down hand and said. "Your hands are not the same either" (Alisha's hands do not have the same number of fingers on them) Then I about hit the floor when Alisha put her fingers up her nose and then spread them apart and said your nose is big. The lady said well, that's my heritage and she said when you get big your nose will get bigger too. Alisha had a pondering look on her face but she didn't say anymore and the lady laughed at the look on Alisha's face. I really enjoyed talking with this lady she was just compeletly peaceful and loving and I'm very sure that she is an awesome grandmother to some very lucky grandchildren.
Then we went shopping.... I'm very grateful to have GPS and I have preprogrammed a few useful New Jersey places into it. The down side is that you still have to know where you are going so that you can choose your locations in the correct or at least a senseable order.. My grocery shopping stops were not really very far apart but I did have a hard time finding them. The biggest problem though is that the GPS was off a little sometimes and so I would turn when it said but it was one parking lot too early but I had a hard time getting to where I was looking for mostly because there was no Target located on the street where the GPS thought there was one. I asked some locals and there has never been one there. That and my GPS says "Make a legal U turn when possible." That is almost laughable, there are just about no protected left turns at least anywhere near this area. There are no "NO U turn" signs anywhere because you simply can't make one. Sometimes it looks really funny I've seen everyone drive out to the middle of an intersection and then everybody sorts themselves and they finish as the lights turn red. Anyway, the around the block method doesn't always work when you don't know the lay out of things.. so 20 miles later on a very local trip and we had some food to eat at least enough to last us through Monday and a little longer.
Then we had the Enterprise car guy come pick us up and we got our car. They were very helpful and nice. There was a nice lady who was getting a car also and she started talking with the girls and just made everybody feel better. She was holding Alisha's hands and listening to her talk all about some really silly crazy stories that she likes to string together. Then Alisha started looking at her hands in the ladies hands and said your hands are not the same as mine.... your hands are black. The lady said yes, I have black skin. Then she held her hand palm side up under Alisha's hand and Alisha was so surprised that her hands were lighter on the palms. This was really strange to me because Alisha had gone to a very diverse preschool for two years. Alisha held the lady's hand palm up next to her palm down hand and said. "Your hands are not the same either" (Alisha's hands do not have the same number of fingers on them) Then I about hit the floor when Alisha put her fingers up her nose and then spread them apart and said your nose is big. The lady said well, that's my heritage and she said when you get big your nose will get bigger too. Alisha had a pondering look on her face but she didn't say anymore and the lady laughed at the look on Alisha's face. I really enjoyed talking with this lady she was just compeletly peaceful and loving and I'm very sure that she is an awesome grandmother to some very lucky grandchildren.
Then we went shopping.... I'm very grateful to have GPS and I have preprogrammed a few useful New Jersey places into it. The down side is that you still have to know where you are going so that you can choose your locations in the correct or at least a senseable order.. My grocery shopping stops were not really very far apart but I did have a hard time finding them. The biggest problem though is that the GPS was off a little sometimes and so I would turn when it said but it was one parking lot too early but I had a hard time getting to where I was looking for mostly because there was no Target located on the street where the GPS thought there was one. I asked some locals and there has never been one there. That and my GPS says "Make a legal U turn when possible." That is almost laughable, there are just about no protected left turns at least anywhere near this area. There are no "NO U turn" signs anywhere because you simply can't make one. Sometimes it looks really funny I've seen everyone drive out to the middle of an intersection and then everybody sorts themselves and they finish as the lights turn red. Anyway, the around the block method doesn't always work when you don't know the lay out of things.. so 20 miles later on a very local trip and we had some food to eat at least enough to last us through Monday and a little longer.
Saturday, June 20, 2009
Day 1.. leaving....
I thought that I would be able to go to SF and fly and maybe cry a little when we hugged goodbye.. and then kinda giggle with the girls after we were through security that we were going on a long girlie vacation... Here is what actually happened......
Jeff and I stopped to have lunch with the girls and have a great time just being together while the girls played it was wonderful!!! The drive chatting together was really nice too.
The happiness didn't last much longer. I think some of it was triggered by not getting any help at the check in counter and I guess I was too over stimulated by everything including our crazy amount of luggage to actually read past the eticket logos on the screens.. I absolutely could not focus!! We have always used etickets but I knew that we didn't have etickets this time and I was starting to feel kind of panicked that we were going on this huge trip and I have bearly made it past the front doors of the very first stop and I'm done.... Jeff came in later and just pushed the second button on the screen. I was flooded with feelings of I can't do this!!!! Being such an actually easy thing made it so much worse.
Then we went to the security check point...
There was an older woman with a blind man in front of us taking off their shoes putting them in the tubs. I thought he was doing a great job and was actually pretty fast for not being able to see the tubs. The people behind me were very irritated. I couldn't believe that they couldn't even be patient for a man that was clearly blind!!!! Seriously he had the long white cane and was managing just fine. They were much less patient with me.
I had two large carry on bags a stroller a car seat and two little girls. It's possible that I didn't word this right... I think I should have said bag check instead but I had them hand check my bag.
I had put all of our flip flops in a tub and laptop electronic games for the girls.. then the lady at the Xray said that I needed to put everything that I wanted hand checked in a tub (the tubs are now about six to seven people behind me and none of them looked happy). So I turned around and looked the grumpy guy next to the tubs and said "If you can pass me a tub I can get done faster." They passed the tub to me and I put all of Alisha's extra Nutren formula cans in the tub.
Alisha was being diverted off to the side because she was in her stroller so they are waiting for me to repack our bags and slip shoes on so that they can check her. I told them that she can walk and just go through but they wouldn't hear it and just smiled at me like they were doing me this huge favor. About this time two security guys come up to "hand check" Alisha's formula and there is a now a female security person with Alisha and Mataya about ten feet away from me.
I'm checking them and still repacking when I hear one of the male security guards say "How can I hand check this? I can't see whats in the can."
I said "My daughter has a feeding tube this is prescription formula and it's way more then your two point whatever ounces that I'm allowed I just wanted you to see what it was and that it's okay."
They say "Well, why can't it be Xrayed?" I say "Xraying is fine. I'm just trying to do what ever it is that you want me to do to get through here faster and it's not working." by this time things are really piling up and one really nice guy from the line comes up and says.. "Here let me help you with your stuff.. or this is really going to be backed up." He started lifting my partially packed bags on to an unused conveyor belt next to us. This simple act of kindness was HUGE to me. I don't believe that there are any little acts of service it's all wonderfully HUGE!! I was then over to see what was going on with the girls in their area of security and all the grumpy people left while we were there so that was good. They waited for me to be there and then they patted her down in her stroller then they patted down the stroller and got a special wipe and wiped it down. I was told that was to see if there were any chemicals on it. We were cleared and on our way to the gate. We couldn't find a place for us to sit by our gate at first so we sat over a few. Then Jeff called to see how we were doing because he kind of lingered to see some of the security stuff and how we were doing. Just hearing his voice was too much at this point and I'm feeling like a total Pansie and can't keep it together. If this were a hospital stay I would be fine I could have a lot of moments alone to collect myself but I still couldn't figure what was wrong with me and why I was having such profound self doubt. Then he said "I love you babe." I just cried some more.. then I told him about security and all that happened then the call failed. I was kind of glad. I love my husband but I was looking for a distraction and to be done with these out of control crazy feelings. Talking to him at the hotel would be fine not nearly as many what if's ahead of me after I'm already there. I was talking with the girls and Jeff called back I started bawling the silent but ugly cry.. I just handed the phone to Mataya.. I hear Mataya say "Yeah, she's crying .... but she's really ok." Later when we were getting in line I thought why cant I just get it together. One thing that I did a lot during hospital stays with Alsiha was to sing church songs that were special to me or brought a special feeling and powerfulness that I could borrow from to get through the next thing. Normally those songs really work for me. I started running through the words and kind of humming to myself "Onward Christian Soldiers" At other times I have felt as if there was an army of angels behind me giving me strength and courage. This time the feelings were so strong the spirit was there I could feel it all around me the feeling was soo good and so intense that I was really bawling. I was trying really hard to calm down. I started to try to conquer some very short term tasks at hand instead. I had the girls and all our stuff (too much stuff fake security in a suit case thinking I packed for all the what if"s) and talked to the lady at the gate and let her know that I had kids so that we could be boarded with the first group of people. She called first class and elite flyers and people who had problems walking.. no mothers with children. There was another mom behind me. She was letting on tons of people and she wouldn't look at me when I was talking to her. They were squished together in line like cattle.. I stepped closer to the podium and said " Hi excuse me.. I have two kids a car seat and bags...." She said "Sorry mame you need to step back for security reasons. I took a step back as I said "I will if you will talk to me from here." She said "We are boarding first class and elite passengers only." I asked some of the men that were about to board if they had first class or elite tickets and they said no. I looked at her and I said I really need to board our seats are on the very last row. The nice guy from security offered to let me go ahead of him but she wouldn't have it. Finally she let me and the mother behind me board it was really hard to not hit anyone with the carseat as we walked through and the people were looking at me but not even leaning away to make it easier..after a few rows I figured well, it's your coma!!!! I was still careful though..
After we were on the plane I find out that the last seats do not get an over head compartment. it's all full of emergency equipment. So my bags were on the opposite side a few rows up. That's where all of our gluten free food etc etc etc was located. I got the girls buckled in and sat down and tried not to cry.. I really was afraid because it just isn't me.. I normally don't just sit and cry and this day I was just about unable to stop. The flight attendant about my age started calling me "sweety" it was so pathetic!!
It wasn't long that we were in the air and I managed most of the time to mellow out... Then they started to feed everybody. first class first and then they came to our row because we ordered special gluten free meal. There were gluten free stickers over all the original labeling. I ate the chicken and cheese sandwich I was so hungry by then. It wasn't long before I wasn't feeling very well at all and I picked off the gluten free sticker and everything in the meal was totally gluten filled. Infact everything had WHOLE WHEAT as the fist ingredient!!!! Thank goodness I'm not a total celiac!! Besides the bread that I thought tasted odd enough to be some random gluten free bread there was a roll and vegan cookie that also had WHOLE WHEAT flour.. Mataya and I had a lot of Sprite and water. Watching "New in Town" was really pretty good and it was fun to watch some reruns of some of my favorite shows including Big Bang Theory. That was really nice and the girls traveled like champs!!
When we landed we walked all the way through a closed airport it was tricky getting the girls on and off the moving sidewalk but they liked the ride. Amazing the little things that are fun when you don't do them often.
The guy that picked us up was really nice!! I was so grateful for him. As soon as I saw him I felt good, normally I'm trying to beat down this creepy feeling. I never had so much as a plumber come to the house when I was a kid because my Dad fixed everything. Strange men are creepy to me most of the time. The driver was so nice and just somebody's husband that I asked for his card so that I could request him if he is working when we on our way home. Juliet director of sales for the Residence Inn Marriott, Jeff spent a lot of time talking with her to get a lot of things set up for us, she recommended this driving company too. She did a wonderful Job!!!! I'm so glad that Jeff did such a great job researching things for us too!! He even found a gluenfree bakery that sells gf cookies and gf cookie dough.. It will be fun to bake cookies with the girls and have some feelings of home while we are away.
We got to the hotel in the wee hours and the girls were really tired.. I brought all the the luggage up on the bellman's cart and I got to bed by around 3:00am.. I was so excited about our room it was so much more then I expected. It feels like a fun apartment and the girls and I will have fun here..
Thanks again everybody for making this possible.
Jeff and I stopped to have lunch with the girls and have a great time just being together while the girls played it was wonderful!!! The drive chatting together was really nice too.
The happiness didn't last much longer. I think some of it was triggered by not getting any help at the check in counter and I guess I was too over stimulated by everything including our crazy amount of luggage to actually read past the eticket logos on the screens.. I absolutely could not focus!! We have always used etickets but I knew that we didn't have etickets this time and I was starting to feel kind of panicked that we were going on this huge trip and I have bearly made it past the front doors of the very first stop and I'm done.... Jeff came in later and just pushed the second button on the screen. I was flooded with feelings of I can't do this!!!! Being such an actually easy thing made it so much worse.
Then we went to the security check point...
There was an older woman with a blind man in front of us taking off their shoes putting them in the tubs. I thought he was doing a great job and was actually pretty fast for not being able to see the tubs. The people behind me were very irritated. I couldn't believe that they couldn't even be patient for a man that was clearly blind!!!! Seriously he had the long white cane and was managing just fine. They were much less patient with me.
I had two large carry on bags a stroller a car seat and two little girls. It's possible that I didn't word this right... I think I should have said bag check instead but I had them hand check my bag.
I had put all of our flip flops in a tub and laptop electronic games for the girls.. then the lady at the Xray said that I needed to put everything that I wanted hand checked in a tub (the tubs are now about six to seven people behind me and none of them looked happy). So I turned around and looked the grumpy guy next to the tubs and said "If you can pass me a tub I can get done faster." They passed the tub to me and I put all of Alisha's extra Nutren formula cans in the tub.
Alisha was being diverted off to the side because she was in her stroller so they are waiting for me to repack our bags and slip shoes on so that they can check her. I told them that she can walk and just go through but they wouldn't hear it and just smiled at me like they were doing me this huge favor. About this time two security guys come up to "hand check" Alisha's formula and there is a now a female security person with Alisha and Mataya about ten feet away from me.
I'm checking them and still repacking when I hear one of the male security guards say "How can I hand check this? I can't see whats in the can."
I said "My daughter has a feeding tube this is prescription formula and it's way more then your two point whatever ounces that I'm allowed I just wanted you to see what it was and that it's okay."
They say "Well, why can't it be Xrayed?" I say "Xraying is fine. I'm just trying to do what ever it is that you want me to do to get through here faster and it's not working." by this time things are really piling up and one really nice guy from the line comes up and says.. "Here let me help you with your stuff.. or this is really going to be backed up." He started lifting my partially packed bags on to an unused conveyor belt next to us. This simple act of kindness was HUGE to me. I don't believe that there are any little acts of service it's all wonderfully HUGE!! I was then over to see what was going on with the girls in their area of security and all the grumpy people left while we were there so that was good. They waited for me to be there and then they patted her down in her stroller then they patted down the stroller and got a special wipe and wiped it down. I was told that was to see if there were any chemicals on it. We were cleared and on our way to the gate. We couldn't find a place for us to sit by our gate at first so we sat over a few. Then Jeff called to see how we were doing because he kind of lingered to see some of the security stuff and how we were doing. Just hearing his voice was too much at this point and I'm feeling like a total Pansie and can't keep it together. If this were a hospital stay I would be fine I could have a lot of moments alone to collect myself but I still couldn't figure what was wrong with me and why I was having such profound self doubt. Then he said "I love you babe." I just cried some more.. then I told him about security and all that happened then the call failed. I was kind of glad. I love my husband but I was looking for a distraction and to be done with these out of control crazy feelings. Talking to him at the hotel would be fine not nearly as many what if's ahead of me after I'm already there. I was talking with the girls and Jeff called back I started bawling the silent but ugly cry.. I just handed the phone to Mataya.. I hear Mataya say "Yeah, she's crying .... but she's really ok." Later when we were getting in line I thought why cant I just get it together. One thing that I did a lot during hospital stays with Alsiha was to sing church songs that were special to me or brought a special feeling and powerfulness that I could borrow from to get through the next thing. Normally those songs really work for me. I started running through the words and kind of humming to myself "Onward Christian Soldiers" At other times I have felt as if there was an army of angels behind me giving me strength and courage. This time the feelings were so strong the spirit was there I could feel it all around me the feeling was soo good and so intense that I was really bawling. I was trying really hard to calm down. I started to try to conquer some very short term tasks at hand instead. I had the girls and all our stuff (too much stuff fake security in a suit case thinking I packed for all the what if"s) and talked to the lady at the gate and let her know that I had kids so that we could be boarded with the first group of people. She called first class and elite flyers and people who had problems walking.. no mothers with children. There was another mom behind me. She was letting on tons of people and she wouldn't look at me when I was talking to her. They were squished together in line like cattle.. I stepped closer to the podium and said " Hi excuse me.. I have two kids a car seat and bags...." She said "Sorry mame you need to step back for security reasons. I took a step back as I said "I will if you will talk to me from here." She said "We are boarding first class and elite passengers only." I asked some of the men that were about to board if they had first class or elite tickets and they said no. I looked at her and I said I really need to board our seats are on the very last row. The nice guy from security offered to let me go ahead of him but she wouldn't have it. Finally she let me and the mother behind me board it was really hard to not hit anyone with the carseat as we walked through and the people were looking at me but not even leaning away to make it easier..after a few rows I figured well, it's your coma!!!! I was still careful though..
After we were on the plane I find out that the last seats do not get an over head compartment. it's all full of emergency equipment. So my bags were on the opposite side a few rows up. That's where all of our gluten free food etc etc etc was located. I got the girls buckled in and sat down and tried not to cry.. I really was afraid because it just isn't me.. I normally don't just sit and cry and this day I was just about unable to stop. The flight attendant about my age started calling me "sweety" it was so pathetic!!
It wasn't long that we were in the air and I managed most of the time to mellow out... Then they started to feed everybody. first class first and then they came to our row because we ordered special gluten free meal. There were gluten free stickers over all the original labeling. I ate the chicken and cheese sandwich I was so hungry by then. It wasn't long before I wasn't feeling very well at all and I picked off the gluten free sticker and everything in the meal was totally gluten filled. Infact everything had WHOLE WHEAT as the fist ingredient!!!! Thank goodness I'm not a total celiac!! Besides the bread that I thought tasted odd enough to be some random gluten free bread there was a roll and vegan cookie that also had WHOLE WHEAT flour.. Mataya and I had a lot of Sprite and water. Watching "New in Town" was really pretty good and it was fun to watch some reruns of some of my favorite shows including Big Bang Theory. That was really nice and the girls traveled like champs!!
When we landed we walked all the way through a closed airport it was tricky getting the girls on and off the moving sidewalk but they liked the ride. Amazing the little things that are fun when you don't do them often.
The guy that picked us up was really nice!! I was so grateful for him. As soon as I saw him I felt good, normally I'm trying to beat down this creepy feeling. I never had so much as a plumber come to the house when I was a kid because my Dad fixed everything. Strange men are creepy to me most of the time. The driver was so nice and just somebody's husband that I asked for his card so that I could request him if he is working when we on our way home. Juliet director of sales for the Residence Inn Marriott, Jeff spent a lot of time talking with her to get a lot of things set up for us, she recommended this driving company too. She did a wonderful Job!!!! I'm so glad that Jeff did such a great job researching things for us too!! He even found a gluenfree bakery that sells gf cookies and gf cookie dough.. It will be fun to bake cookies with the girls and have some feelings of home while we are away.
We got to the hotel in the wee hours and the girls were really tired.. I brought all the the luggage up on the bellman's cart and I got to bed by around 3:00am.. I was so excited about our room it was so much more then I expected. It feels like a fun apartment and the girls and I will have fun here..
Thanks again everybody for making this possible.
Blogumentary
I wanted to try to make this a blogumentary for all of our family friends and everyone that made this trip possible. I will do all that I can to make this trip successful. I also really want to make this be an awesome resource for all the families who plan to go to St. Joseph's Feeding Center. I do not however plan on sharing a lot of details about how they feed Alisha. This is not DIY and I don't think reading a book about how to swim will do you much good. Every child is unique and has their own mountains to climb and like a lot of things in life you will just have to experience it for your self and I really hope you do and spread the word to as many others that you can while you are at it.
Monday, June 8, 2009
One Last Push We Are Almost There!!!
Hello all!! First, we want to thank once again everyone who has helped, volunteered, donated, bought pizza or mary kay, and came to get their car washed!!!! THANK YOU ALL SOOO MUCH!! We are just 11 days from Alisha's departure date and we are making a last push effort with a 2nd Pizza Fundraiser at Straw Hat at 2929 Matherfield Road. Skip the owner has graciously said he will repeat the same fundraiser as last time. So, anyone who goes into Straw Hat on Monday June 15, 2009 from 11 a.m. to 10 p.m., mentions Alisha's name and orders a regular priced pizza of any size, Skip will donate 50% of that pizza purchase to Alisha's trip. This only applies to pizzas purchased.
Thank you Skip!!!
Thank you again....come enjoy some pizza with us on Monday June 15, 2009. Also you can wish Alisha, Heather and Mataya a successful trip to the St. Joseph's Children's Hospital Center for Pediatric Feeding and Swallowing. Heather will be blogging about their experiences so keep checking back to stay updated with Alisha's progress in New Jersey!!!
Thank you Skip!!!
Thank you again....come enjoy some pizza with us on Monday June 15, 2009. Also you can wish Alisha, Heather and Mataya a successful trip to the St. Joseph's Children's Hospital Center for Pediatric Feeding and Swallowing. Heather will be blogging about their experiences so keep checking back to stay updated with Alisha's progress in New Jersey!!!
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