All I have written is that I fed her Strawberry yogurt and prunes at 7:45am and that she weighed 30.13 pounds.
What I remember about that day is that Alisha did really pretty well but still resisted the chewables but I went home with a nuk brush. So I was bringing my safety net with me. I also know that I ran out of batteries this day and drove practically back to the hotel to the CVS pharmacy to get some. I did lots of very fast running this day. I also went back to the hotel for Alisha's day trement jounal because I forgot it on my way out the door with the high chair and verything else!! (it was the day to return the highchair I kept it at the hotel the whole time) and I video taped my last trip in to the center. It was hard to say goodbye to everybody!!! Larraine had a follow up appointment that day and I was really glad to see her. She was waiting to follow me home to the hotel because I had tons of food and things that I was so not taking with me that I really wanted to give to her. Larraine also had to work that night so we had to really hurry so she would have time to came over. Otherwise I have no idea what I'm going to do with all this food and frying pan etc. etc!! It was also really great because otherwise they might have had to kick me out when they closed down the building for the night. I wanted to take pictures of EVERYTHING and EVERYBODY!!! I wanted to take as much with me as I could knowing that it would never be enough!! I missed pictures of Dr Berkawitz, one security guard and two parking attendants. Luckily I had Larraine to keep me with some excited focus!! I also have to admit that I video taped the whole drive from the feeding center to the hotel. At the hotel and really for the next couple of days I was on total spaz o matic!!! I had so much to do and little sleep and hardly any focus. I remember talking as fast as I could to Lorraine so I could try and say everything and not make her late for work. I also missed several things around the hotel to give her. It was GREAT to get to see her and Jude!!!! I'm so glad I met them. Soon the time came that I used my GPS to get Lorraine back to a familiar freeway and she was gone. I was still just so happy to have had her with me when I was leaving the center and to help that be a happy goodbye.. I'm so grateful to her.
Then back to the hotel packing up the last things and then we went out for one more pizza night!! These guys were so great!! I tell ya I even hear the word Italian or see a green white and red flag I'm on the verge of swooning.. Man!! Hospitality to that level is truly a dieing art!! They try to teach it to people in customer service positions but most of the time it really feels fake nothing like truly being taken care of. This is a place that I could not get enough of!! Alisha ate some olive slices off the pizza and she ate some pureed food while we were there. When the girls and I got back to the hotel we went swimming. They wanted to go one last time and I wanted some endorphins or something. I was just about desperate for any energy I could get. I set the timer that I used for timing feedings so we didn't stay too late. After the girls were in bed I had "Independence Day" on the TV while I was finishing packing. I was so tired that no matter what I tried I felt that I was making almost no progress and I couldn't keep my focus and kept coming up with alternate plans to try to make things run smoother but what really happened is that I couldn't even remember what plan I was trying to run with. I was so tired that my body felt stale on the inside is the only way I know how to describe it and I felt that even if I slept with the theory of moving faster rested I just felt that I didn't have enough time left to make it happen. I finally did go to sleep. Not really feeling rested I'm sure because all while I was "sleeping" I knew that I wasn't done.
Sunday, September 27, 2009
Tuesday, August 4, 2009
Day 34
In the morning Alisha had prunes and strawberry yogurt (breakfast of champions) she threw up on about her seventh bite for no reason that I could see. We cleaned up and she ate the rest of her meal just fine. When we got to the center Alisha thought she should be weighed. She doesn't get weighed everyday though.. Anyway, today was not a weigh in day and she was mad about it. Whatever..
Anyway, I feel like we are getting closer to a really good chewable feeding but it hasn't happened yet. On the way home from the center we go to the the shopright again and get some gf snacks for on the plane so that we are covered regardless of what snacks they have. I also need to admit here that we were looking for NJ Tshirts and post cards and I never was able to find them. Ya know what?!?!? They were at the shopright the whole time!!! After I saw them I remember kinda seeing them. Well, the New York ones anyway. It was awesome!! I had plans to make some with the girls when we got home but this was great!! I got the girls a hat each and I got a shirt with New Jersey stats on it. Yea!! some Jersey pride!! Did ya know.... Jersey is 57% farm land and forest?? Has the most horses per square mile in the U.S.?? Highest cost of living in the U.S.? Okay that one's not so great but they have the most diners in world. 80% of the country's imports come through Jersey first. #1 state for blueberry and cranberry production. Has the longest boardwalk in the world. Tallest water tower in the U.S. "Monopoly" uses the names of Atlantic City Streets. Professional basketball began in Trenton. Anyway, very fun find!! We come back to the hotel and feed Alisha down stairs with us while we have our usual. Alisha always likes to sit on the bar stools by the window so that it where we can always be found at dinner lately and for breakfast too. She likes to be up high where she can see. She has started to protest drinking her milk or at least she has figured out how to put her tongue over the hole on her cup and even swallow and make swallowing sounds at the same time.. what a bugger. I check the front desk again to see if Alisha's package has come yet. For this whole trip I keep checking to see if Alisha's back up button has come yet. I have talked to her supply company a few times about it and have lately added that even though we calculated how many days and therefore cans of formula that we would need shipped we are four days short. They are supposed to be here before today. I check the desk after dinner and there is still no package. So we go back out to shopright and we end up buying some off brand but gluten free version of Ensure. It's half the calories of what her formula gives her but I figure it's as good as I can get and better then nothing at this point. Also at this point I figure that a NJ Tshirt would be pretty sweet for Shyanne so I add it to the fancy grocery store bag that has my glad ware and a cookie sheet that we loved using. Shyanne is staying for a few more weeks and is staying in a different hotel with a full kitchen plus she is driving back to Colorado and though she might get low on space she doesn't have to weigh her bags!!!
Anyway, I feel like we are getting closer to a really good chewable feeding but it hasn't happened yet. On the way home from the center we go to the the shopright again and get some gf snacks for on the plane so that we are covered regardless of what snacks they have. I also need to admit here that we were looking for NJ Tshirts and post cards and I never was able to find them. Ya know what?!?!? They were at the shopright the whole time!!! After I saw them I remember kinda seeing them. Well, the New York ones anyway. It was awesome!! I had plans to make some with the girls when we got home but this was great!! I got the girls a hat each and I got a shirt with New Jersey stats on it. Yea!! some Jersey pride!! Did ya know.... Jersey is 57% farm land and forest?? Has the most horses per square mile in the U.S.?? Highest cost of living in the U.S.? Okay that one's not so great but they have the most diners in world. 80% of the country's imports come through Jersey first. #1 state for blueberry and cranberry production. Has the longest boardwalk in the world. Tallest water tower in the U.S. "Monopoly" uses the names of Atlantic City Streets. Professional basketball began in Trenton. Anyway, very fun find!! We come back to the hotel and feed Alisha down stairs with us while we have our usual. Alisha always likes to sit on the bar stools by the window so that it where we can always be found at dinner lately and for breakfast too. She likes to be up high where she can see. She has started to protest drinking her milk or at least she has figured out how to put her tongue over the hole on her cup and even swallow and make swallowing sounds at the same time.. what a bugger. I check the front desk again to see if Alisha's package has come yet. For this whole trip I keep checking to see if Alisha's back up button has come yet. I have talked to her supply company a few times about it and have lately added that even though we calculated how many days and therefore cans of formula that we would need shipped we are four days short. They are supposed to be here before today. I check the desk after dinner and there is still no package. So we go back out to shopright and we end up buying some off brand but gluten free version of Ensure. It's half the calories of what her formula gives her but I figure it's as good as I can get and better then nothing at this point. Also at this point I figure that a NJ Tshirt would be pretty sweet for Shyanne so I add it to the fancy grocery store bag that has my glad ware and a cookie sheet that we loved using. Shyanne is staying for a few more weeks and is staying in a different hotel with a full kitchen plus she is driving back to Colorado and though she might get low on space she doesn't have to weigh her bags!!!
Day 33
Alisha weighed 30.14lbs. She was happy and playful this day and she did a lot better with the chewables. We changed the plan so that I'm giving her meds at 7:30am and feeding her at 8:00 so that her schedule is more like what it will be at home when she is going to school. Then we meet at the center at 10:00 and she eats her snack of chewables. They start having me feed her the chewables because we both need as much practice as we can get before we go home. She still refusing a lot of bites but there is improvement but still not what she was doing last week. Alisha is still hitting herself and for a little longer spans of time. When we got back to the hotel I have the girls pack up their things into the suitcases while I packed my things and lots of odds and ends including our very well traveled blender. Then we had dinner downstairs I'm really getting to like eating salad with cheese OR olive slices and dressing with chips salsa and A&W Root Beer. This meal is becoming another variation on comfort food. They always had more to eat then that like lasagna and other great comfort foods but they all had gluten. IT was wonderful to not have to make dinner every night and I was very glad they offered it. Alisha ate sweet potatoes and peas. I'm running out of choices and I really don't want to go to the store one more time!!!! Then we went back upstairs and got suitcases and took them down to the work out room and weighed our bags. I had almost everything... I thought we did really pretty okay I was under by a couple of pounds on a couple of bags. When we get back up stairs I allow the girls access only to their suitcase so that things don't get shifted around too much. we get jams on watch Pengu and Alisha drinks her night time milk. The girls go to bed and I watch TV and try to feel like I have a turn. I'm sleeping less and less as our time runs out.. I'm starting to look forward to being home. My Mom's family is all together in Idaho and I miss them.
Thursday, July 23, 2009
Day 32
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.
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.
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!!
Tuesday, June 30, 2009
Day 9
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!!!
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!!!
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.
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