View Project beauteachful vivian

Vivian was a 35 week preemie born at 4 pounds 5 ounces and 15 1/2 inches long. At birth her right lung collapsed. She remained in the NICU for over a month. During her stay she had her first genetic test which came back negative for major syndromes, such as Down Syndrome. Vivian has been tested for over 100 genetic syndromes, all negative. Some of the syndrome's we are researching, such as Kabuki, do not have a blood test. She is unable to eat much due to her vaulted palate, bifid uvula (that thing that hangs down in the back of your throat, hers is cleft), and a submucous cleft. She has progressively gotten stronger and can now be taught to eat using different behavioral strategies and hard work. A place called the Los Altos Feeding Clinic has accepted Vivian into their behavioral program. Her and her mom will need to live in Los Altos, Ca (near San Jose) for 3-5 weeks. During that time Vivian will go to the clinic to be fed 3 times a day. The director, Ben Zimmerman, has said he sees no reason why Vivian will not be able to eat. We keep our fingers crossed. Even if she does learn how to eat we have a long road ahead of us to train her to eat with others and to convince her GI doctors to take out her feeding tube. Right now Vivian drinks only 1 ounce of her 6 ounces of super concentrated Pediasure. In one hour she will eat about 1/2 ounce of baby food with a lot of fighting.

Please contact us at beauteachful@hotmail.com

Donations may be made at USBank in the Vons Store in Victorville or you can check locations near you at USBank.com.

Our mailing address is:
9632 SVL Box Victorville, Ca 92395

May 10, 2006- Today we heard from the sales manager of the Country Inn Suites. They have given us a great deal on a room. It has a laundromat and a cafe. Tom's 16 was kind enough to promote our cause at their cruise night. We also have a Non-profit account at US Bank under; Vivian Hovannesian Donation Account. We are flying out Tuesday, May 16 to do an evaluation at the clinic. We also will spend the day scoping out our temporary new home. We also made an appointment to see Dr. Hudgins, a genetics specialist, at Stanford. Her area of interest is in Kabuki Syndrome. Hopefully she will be able to look at Vivian and let us know what she thinks, since there is no blood test. Thank you everyone!!!

May 15, 2006 Today has been incredibly hectic. We are making final preparations for the flight to San Jose tomorrow. Good thing I went online to check out our reservation one last time. They had booked us for a flight leaving at 7:00 am, about 2 hours before our flight was supposed to be! Everything is Ok now, just pray we get through security and on the plane ok. Today was also a busy day because the Daily Press has decided to do an article about our situation. I had originally emailed them about advertising for the yard sale. They sent out a photographer and did an interview over the phone. I really hope other parents in the area will email us about the clinic and about our situation because there are such limited resources on the West Coast for children, especially small children, with feeding issues. Our plan is first and foremost to get Vivian to eat. After we will work on the appeals process with our insurance to pay for the clinic. We have done this on two occasions, one for her feeding pump and one for genetic testing, in both cases it has taken over a year and they have either denied us again or made partial payments. If we are able to recoup anything, everyone will be repaid. All additional money will remain in the account and we will be creating a foundation to help educate and support families efforts to help their children with feeding issues. It has been extremely hard for us to ask for help. Our life was so different before Vivian. We made a lot of decisions thinking that nothing like this would ever happen. But it has happened. Just when we have a way to help her it would kill me to make her wait or pass up this opportunity because we have spent everything we have on medical over the last 16 months and 4 weeks is too little of a time to find the money we need. Blame it on the Mom!! I just don't know what else to do. Vivian has to be fixed and now is the time. Thank you to everyone as always. We have had incredible offers of time, money, cars (wow), yard sale items, and support. Vasken's school even gave us a month of tuition free while we are gone. Vasken had his blood drawn to be sent to PA tomorrow. We should know in a few weeks whether or not he has the mutation also. We are hoping he doesn't for obvious reasons, but also because it will let us know whether or not we are looking at the correct gene in Vivian. It is amazing, but difficult to be in our position. I will let you know how everything in Los Altos/ San Jose goes.

May 17, 2006 Long day, long day, but a good one. Ben, at Los Altos Feeding Clinic, said there was no reason he could not get Vivian to eat. He was very happy to see her swallowing. He had me try to feed her baby food and drink from a bottle. So we are definitely on for June 12. We will be driving out Sunday June 11 to settle in and begin treatment June 12. Her occupational therapist is going to fly in to observe in order to continue our effort when we get home. We even met one of Los Atlos Feeding Clinic's parent's. Her daughter is 5 and had a trach, but is able to eat now. Her OT said she wouldn't eat for 8-10 years. It seems incredible to believe that Vivian WILL EAT!!! Everyone on the flight was wonderful and helpful. It made the trip a lot easier. Vivian did well, but was very tired by the time we came back. Now we are working on the yard sale! The Daily Press did a wonderful article yesterday, but put the yard sale date as June 26-29! It is May 26-29! Thanks to everyone!!

May 18, 2006 Another long day, but a good one! We received two truck and trailer loads of donated items for the yard sale. We also received a boat and van that was donated for the sale. All I can say is WOW and thank you!! We also received some very gracious donations from some wonderful people at my old school site. We are just working on making sure the yard sale is a success! We have so many wonderful items.

May 19, 2006 speoke to Ben today at the clinic. He has given Vivian a 6 week window to be sure that she is eating (we hope 3 or 4 weeks). We have to begin Vivian's preparation for treatment 1 week prior to leaving. We will have to feed her by mouth only except for water during the day. The remainder will be given at night. So for a while we are back to waking up every 2-3 hours. But if that is what it takes we will do it! Vivian has gone from playing/pulling my hair while she eats to pulling on my eyebrows, eyelids, and eyelashes (ouch!). She really needs to learn to eat soon. The Daily Press ran another story on Vivian yesterday on the front page of the Local section. It has the correct date of the yard sale. We have nearly packed our garage floor to ceiling with yard sale items. We can always find room for more! It is going to be great!!

May 21, 2006 We are gearing up for a busy week. We have a very full garage full of donations for the yard sale. We also had people stopping by the house asking if we would like more items. Many of them had the newspaper article in hand or had heard about Vivian from word of mouth. We believe we already have a buyer for the donated boat and still have the van and Thunderbird to sell. Things will be moving this weekend. We have been in contact with many of our friends and family who have offered to come up and assist us. Vivian has a Craniofacial clinic appointment at Loma Linda tomorrow at 2pm. We will sit in a romm for 3-4 hours and different specialists (dentist, plastic surgery, maxiofacial, speech pathology, nutritionist, etc.) will come in and see Vivian for her yearly check-up. These appointments are especially frustrating because they will all look at her and tell us there is nothing they can do. Atleast this time I won't be so freaked out knowing that we are going to the feeding clinic to get help. Tomorrow will also have a different significance since we have a 5 month old nephew who has been in Loma Linda for 3 weeks. We have heard that the doctors think he may have a syndrome that requires a bone marrow transplant. He is suffering from pneumonia which is very common with this type of syndrome. We have been in this situation and know how horible it is. We pray he recovers from the pneumonia and is put in the right hands to cure him completely. Before we go to Los Altos we also have a genetics appointment on June 8. At that time Armen will be examined by the geneticist, since he has the mutation, and we will find out whether or not Vasken carries the mutation. At this point knowing the name of Vivian's syndrome does us little good. We search for the answer only because certain syndromes have degenerative hearing and vision loss. I would hate to think we didn't act fast enough and allowed Vivian to loose some of her sight or hearing. The syndromes we are looking at do not have the sight issues, but do having some hearing loss issues. So far she has had 2 intensive hearing tests that came back normal. She should be checked again soon.

May 22, 2006 Our appointment at Loma Linda went well. Someone on staff saw the article in the newspaper and put it in her chart. Everyone was really interested in the clinic. The director even asked for brochures since they have so many children who cannot eat and have nowhere to go. We really hope we can help other children with this type of problem. The plastic surgeon, dentist, maxiofacial, and craniofacial doctors all feel that Vivian is progressing as well as possible. She will of course do a lot better is she is able to eat. They feel that they can begin work on her mouth between the age of 4-7. At that time they may put in an arch expander to stretch her high arched palate or she will need braces early because she has very little space in her mouth. She will also be starting speech therapy in August because she does have speech delays. While we were at Loma Linda we saw our little nephew. He is VERY ill. He has been diagnosed with X-linked Hyper IgM Syndrome (a syndrome of the blood). It is an immune deficiency syndrome. Because of his compromised immune system he has developed a rare and horrible pneumonia. He has four medicine pumps, a feeding pump connected to an NG tube in his nose, a pump for fluid, and is on a breathing machine. They had to paralyze him because he was fighting the machines. He has to beat the pneumonia and be stable enough to be air lifted to Children's Hospital in LA to begin the process of having a bone marrow transplant. He is very bad. He even has a chest tube. He is also having to receive blood. He looks like Vivian's first picture in her photo gallery, but worse. We are praying for him to get better and hope his little brother will be a match for the bone marrow transplant, whatever happens they still have a long road ahead of them. It is a lot for all of us having two babies with syndromes and such horrible situations. The Loma Linda genetics doctor says the two syndromes are unrelated.

Vasken and Vivian being silly for the camera

May 26, 2006 WOW WOW WOW It was an amazing day today!!! We were out last night getting ready and pricing until about 11pm. Then woke up at about 5am to finish and begin the yard sale. We had a ton of people buying and donating. We still have a ton of stuff and more coming. We may have to have another yard sale next weekend!! We made so much from the wonderful donations. Thank you everyone again!!! We sold the van and boat. We still have one car left as well as a lot of clothes, books, toys, odds and ends, electronics, and furniture. All of it must go, so if you are in the area please come by!!!! Thanks!!!! It feels so reassuring to know we are so close. The Clinic called to set up Vivian's treatment times. Our initial visit is Monday, June 12 at 8:00 am. It is really happening!!!!

May 30, 2006 I wanted to get a final count before I wrote this. What a weekend! You cannot beleive the wonderful people we met. Everyone has been great. Our yard sale total is $7468.26. It is incredible. The cars and boat totaled $2500 so we made the majority from the mutlitude of items donated. We received donations all the way up until Monday. We would go get items, or people would bring items and people wouldn't even let the things get off the truck and start almost bidding on them! We were really picked through, but have a good amount of items left that we are trying to find good homes for or we will be donating. Our $12,000 figure would cover 3 weeks of clinic and the hotel. We still are not sure if Vivian will need the full scheduled 6 weeks. We spoke to our case manager at Inland Reional today. She is anxious to hear about our results and interested in the clinic. It would be great to help other families in this situation. Thank you again to everyone(Our nephew remains paralyzed by medication and on a ventilator. He has cleared his pneumonia, but his lungs are still very damaged).

June 2, 2006 9 days left until we leave. It is amazing how far we have come in a few short weeks. This week will be very exciting and very difficult. Leaving Vasken and Armen will be horrible. But knowing that our life may begin to be normal once Vivian can eat makes everything seem better. We are making the last of our preparations and beginning to pack. Vivian has a genetics appointment June 8. It is actually an appointment for Armen to have the doctor examine him for any hint of Vivian's syndrome since he carries the same mutation. We will also have results for Vasken's blood test to see if he has the same mutation. Our nephew is making very slow progress. He is off of the paralytic sedation and is actually waking through his sedation. His ventilator is doing 50% of the work. His saturation is staying over 90%, that is great. The doctor's think it will be a few weeks before he is off the vent. Then he will be airlifted to Children's LA for bone marrow. This process will take 3-6 months. It is all so overwhelming to have these babies have to struggle. One is hard enough but two is incredible.

June 5, 2006 I usually write these excerpts at night as the kids are asleep and I can unwind, but today it is not yet 4pm and as I am washing clothes, packing, and preparing, everything has become a reality. I think about leaving, trying to make Vasken understand why we will be gone, trying to keep a home together while we are away. I try to think about the people we know personally and have heard about who have had to be away from home for various reasons for longer periods of time. Including my brother and sister in law who will not have their lives back to normal for another 6 months once my nephew completes his bone marrow transplants. Any time away is hard. We would love to have emails while we are gone. Even just a hello. We have met so many wonderful people and don't want them to think they are forgotten!! We have hit our goal and a little extra. We are waiting for the weekend banking to post so we will know for sure, even though I have been keeping up with everything it is nice to see the official total. The extra gives us a little cushion since we have been planning for the least amount of time (3 weeks) and could be there actually 6 weeks (a total of $19,200 in just clinic and hotel). Hopefully it all falls somewhere in the middle. My mom wrote a letter to the Daily Press newspaper and to everyone who has helped thanking them. It was published in the Sunday newspaper Local edition on the 3rd page. Armen did his own version of fundraising and had a benefit poker tournament. He raised $1300. Today we started giving Vivian all her feedings by mouth. That isn't very much. The bulk she will receive every few hours throughout the night. This is being done so she can become used to being hungry during the day and to retrain her eating schedule. She has a feeding pump that we are unable to use because her feeding tube was changed to a non-locking tube. At night she could roll over and unplug the tube and be covered in milk. Also there is a high chance she could choke from being constantly fed. So we will be back to waking up every few hours to feed her through her tube. This schedule should get better once she starts to eat more during the day!

June 7, 2006 We are thrilled by all the support and have 110% reached our goal for 3 weeks of clinic and hotel. It is comforting to know that in the likely case we have to stay longer we have a bit of a cushion. It is fantastic!! Vivian began only eating by mouth during the day and getting fed the rest at night on Monday. She had a horrible night with diarrhea and was screaming in pain. I couldn't help thinking that it wasn't going to work, having her on this schedule. Tuesday she woke up feeling better and did better on her feeding. Today she has been in a good mood. I am waking up once a night since she is taking some by mouth. We went to Tom's and Farmer Boys to say thank you to everyone tonight. We got lots of hugs and kisses for Vivian. Some people we talked to had even been at the yard sale. We are making final preparations for the 7 hour drive on Sunday morning and for the complete journey that lays ahead of us.

June 9, 2006 We went to genetics yesterday and found out that Vasken also has the mutation. What does that mean? It means we were looking in the wrong place and it is not a mutation but actually just a family trait. So we are actually back to square one in that area. We are leaving in just a day and half, so alot of packing, thanking, and goodbyes. We have confirmed everyone is ready for us in San Jose and are as ready as we are going to be. We are very happy to have seen our nephew. He is awake and getting better by the day! Once he is better, though, it is off to Children's Hospital for bone marrow, still a long road ahead. Thank you again! The next time we write we will be in San Jose!!

June 11, 2006 We are here!! The drive went well, it took about 6 hours. We stopped for lunch at a cute cafe that had a bunch of antique toy cars and airplanes. My Dad drove up with us and then flew home. It was so nice to have an extra person especially when Vivian started to get bored in the car. We are anxiously awaiting our first treatment tomorrow at 8 am. Vivian is being very curious, opening all the drawers and walking everywhere!

Vivian on camera
getting ready to eat

Vivian not very happy
a few moments into
her therapy.

June 12, 2006 Vivian began her therapy today. Ben in very positive about the behaviors she is exhibiting. He said that maybe by next Monday she will be able to eat all her food by mouth and only take water through her tube. He will probably work on fluids next week, and then teaching Vivian to eat with me and others the third week. The only bad thing is that the GI doctor's may not take out her feeding tube until next summer because they tend not to do it during flu season. But Ben said even though she has the tube she can eat normally with it in. Her schedule is 8:00, 12:30, and 5:30. We go in and they work with her for about an hour. The actual feeding session has taken less than 20 minutes. The rest of the time we talk and wait for Jeremiah (his office manager) to weigh Vivian's bibs and see how much she actually ate. Vivian has been crying and gagging during the sessions. By the second session she only gagged once. But it's the first day so we will stick with it and see what happens!!!

At Coco's having dinner
with Grandpa after the
long drive to San Jose.

Vivian being silly
in our room. Even
though the sessions
are hard work she
has such a good
disposition.

June 13, 2006 Day 2 The session this morning was good because Vivian did not cry until the very end. She was even dancing to the music Ben puts on. But she only ate about an ounce. Ben says she needs to be eating 4-5 ounces a meal. Lunch was better. Even though she cried a lot more she ate the most so far, 2.5 oz. So we will continue the process and stick in there! Our new mission is also finding a new location for the clinic. Los Altos has very strict zoning guidelines and limited business space. We walked into a realtors office and met a realtor by the name of Josie. Her daughter had feeding issues causing Josie to have to monitor everything her daughter ate to prove to doctors that she was feeding her daughter correctly. Luckily her daughter is fine many years later. She has already found possible locations and we will meet with her Friday. So not only am I on a mission for Vivian but starting my work on the clinic itself. We would like to find a larger facility with more patient rooms, a kitchen, and laundry services. Feeding is a messy business. I have to change Vivian atleast 3 times a day. It is so nice to have laundry here at the hotel! A little update on my nephew. He is off the vent and doing better. The next step is to Children's Orange to begin the bone marrow process.

June 14, 2006 Day 3 The morning and afternoon session were a little disappointing. Vivian took very little, but Ben was trying out some new instruments and techniques. But the dinner session was really good. It also put some things in perspective. Vivian is doing well while drinking from a modified cup. The cup is shaped similar to a McDonald's french fry container, with the half moon cut into it. Ben says a lot of kids who have difficulties closing their mouth muscles can have success with the cup. So the plan is for Vivian to eat baby food, Carnation breakfasts, and other pureed type foods from the cup. There is no way that Vivian will have her tube taken out until next Summer since no doctor will take out a g-tube during flu season. So Vivian may be using the cup and taking only water by tube when she goes home. Over the year she will continue to work on spoon and liquids. All of these items will be able to be worked on at home and/or with the help of Ben via video and phone. Ben is hoping to have Vivian off the tube for food by the end of the week or by Monday still. We have not given up trying liquids and spoon feeding, but Vivian has some issues that will take time to strengthen. I'm happy with the cup. I had to cry today when Vivian was opening her mouth everytime food came to it. I cannot eat a meal without her jumping on me for a taste. These are great things. We will see how things fall into place over the next few weeks, but we are hopeful, especially when Vivian ate 7oz. or 240 calories by mouth. That is HUGE! She has never eaten more than 3.5 ounces of food in her life, and that was only once. Usually it is an ounce or less. So if she could eat like this 3 times a day it would be wonderful. Also it will help her catch up her weight, and feel a whole lot better not being force fed. The fact that she will only be eating food and not that pediasure is also wonderful, not matter what doctors say, there is no substitute for real food!

I wish this was clearer.
This is Vivian absolutely
surrounded by yard sale
items. We almost lost her!

Our new best friends.
Vivian has to be changed
4 times a day!

Vivian's new technique
to get out of eating!
she acts asleep every
session!

Unfortunately it does
not work.

Session require a lot of
work by Vivian and also
by Ben.

She is still happy.
6/15 a beautiful day
enjoying the outdoors
between sessions.

June 15, 2006 Day 4 Vivian ate 500 calories by mouth today. That is about half of her daily intake. She is eating a smoothie of whole milk, chicken gravy, and apple sauce. It sounds horrible but it is a lot better than the Pediasure. It seems like her mouth has come alive! She wants to taste everything I am eating. She is doing really well during sessions. She is not gagging or swatting at the spoon. Don't get the wrong idea though. The sessions are full of screaming and Vivian being unhappy. She is opening her mouth more often and taking more and more from the cup. Today we got to decrease her night feedings. Of course the day I could get a little more sleep I can't seem to get to bed early. Vivian was really restless tonight. I think she was overly tired or she may be cutting a tooth. Either way her mouth must feel very sore from all the exercise. She even bit me on the shoulder when I was carrying her. We're not talking about a love bite either. Hopefully tomorrow will be even better. I just hope the crying stops and she begins to sit nicely and take her meals easier before we go home. This weekend we will go back to night feeding and will try to feed her some food during the day. But since I havn't been trained yet I doubt I will get much in.

6/16 Vivian's first
time in a pool!

6/17 Vasken's first time
on an airplane coming to
visit Mommy and Vivian
on Father's Day weekend!

June 17, 2006 Day's 5&6 Vivian was on a streak last night! I usually put her down and get on the computer, but by 10:45 pm she was still awake and I was exhausted! Our first week is over and we can see some improvement already. Vivian no longer gags and throws up when she is eating. She is still crying during her sessions, but her volume has increased and she is opening her mouth pretty well. This weekend Ben gave me strict instructions to feed her 3 times a day. I have a timer and have only 15 minutes to try to give her 10 bites. She is taking about half the 4 oz. jar but is still crying and will shake her head "no". I have to stay very calm and tell her "Take a bite". At 15 min. I say "Guess what Vivian, you're all done". These are things Ben says throughout the week. You can tell she understands because she calms down when she is done. I am feeding her through her tube at night. I usually feed her at 7pm, 11pm, and 3 or 4 am. It takes a little motivating to get up and orientate myself with my surroundings. But I try to remind myself how important it is to stay on the schedule. I get up and it takes about 10-15 min. to feed her and then back to bed. It has begun to be easier to go back to sleep. Before we came I would lay awake for an hour trying to go back to sleep but worrying about leaving Armen and Vasken and how we were going to make the trip happen. The best part of this weekend is that Armen and Vasken are here!!!! They flew in this morning to spend Father's Day weekend with us. I had held together pretty well thoughout the week, but as soon as I saw them both Vivian and I went crazy!! It is good to be together and it made this week a lot easier knowing they would be here. They are leaving Monday morning. I am pretty sure we are looking at atleast 3 more weeks. I really wanted to be home for 4th of July but there is no way I am leaving before Vivian is 110%. Ben had a mom with twins that gave him only a week. He got one baby to eat, but the other one needed another week. The mom wouldn't stay and actually blamed Ben for the other child not eating. This is such a process. It is a life change that cannot be rushed. I would rather put in the time now then seeing Vivian suffer any more and become more delayed. If she can eat she will catch up in no time. She already seems like a different child because she is comfortable and happy for once. Being force fed and only eating formula is not enough for a person to survive on. I'm so glad we are here! Monday will be a hectic morning. Armen and Vasken are leaving and Lynn, Vivian's OT is coming. Ben is a little reluctant to have Lynn here since OT's and behavioral therapists have such differing opinions. We will make it work! HAPPY FATHER'S DAY!

June 19, 2006 Day 8 We had a wonderful Father's Day weekend with Armen and Vasken! We didn't realize how much we missed each other until we were all together again. Vasken and Armen both did not want to leave. Vivian started to gain some of her weight back since Friday. She should be gaining quite a bit now that her intake has gone up so much. She ate 6 feedings with me over the weekend. Each time she did about 1/2 the jar, which is more than usual, but will get better as Ben trains me how to feed her. We are most likely looking at 4-5 weeks here. We are here for however long it takes, but it makes it that much harder to be apart. Vivian's occupational therapist, Lynn is here to observe today. It is nice to have her here and a good experience for her to see this type of treatment in person. We are meeting so many wonderful people here. Stanford had their graduation this weekend and the hotel was filled with proud parents all very interested in Vivian's story. This week may be my last week as the passive observer during the therapy sessions so I am going to spend it looking into starting the foundation. We are coming into contact with families in need of feeding therapy and want to begin helping others as soon as possible!

June 20, 2006 Day 9 What a day! We started our feeding session at 7:30 am so we could be at Stanford by 9 am. We met with Dr. Hudgins the genetics doctor at Stanford who specializes in Kabuki Syndrome. She has diagnosed Vivian with Kabuki Syndrome. I feel ok about this diagnosis especially since I found out about the syndrome through researching Vivian's characteristics. What does the diagnosis mean? Well it means Vivian is Vivian because of a random mutation that occured. Neither Armen or I are carriers and Vasken or the rest of our family cannot carry it on. Only Vivian could have a child with the syndrome. The doctor was very happy with Vivian's development. She thinks she will be able to function somewhat normally. It is very difficult to tell since she is so young. At this point we will continue to monitor her progress and watch her eyes and ears for any changes. In some of the other syndromes it is common to have degenerative hearing and eyesight. But in this syndrome it is not the case. Without a blood test available to confirm the diagnosis we want to be sure no changes occur that we may be able to prevent or maintain. Many Kabuki babies have feeding problems but all of them grow out of having the feeding tube. The clinic is helping to expedite that process. Vivian ate the most so far today. She had 7.1 ounces at dinner. She had a rough day because of the schedule change and because we just found that she cut her first molar. New teeth are very hard on her system especially since her gums are so thick. Our goal is to have her off the feeding tube in a few days. From there it will take somewhere between 3 weeks to finish the process. So 4th of July will be spent here! Atleast it is not Christmas.

June 21, 2006 Day 10 I noticed at Stanford that Vivian was cutting a molar and today when I checked again her mouth was a MESS!!! She is actually cutting four molars, one on each side top and bottom. I have never seen a child cut so many teeth at once and also such painful ones. Needless to say she is not a very happy baby. She wants to be carried all day. She is eating a little less which has delayed our taking her off the tube. I'm trying not to think of this as a wasted week, but it sure does complicate things. Generally when a baby is teething they will drink a lot more fluids and be soothed by the bottle or cup. In Vivian's case she does not get the chance to lay cradled with a bottle in her mouth, she has to tough it out. I guess it is better that this happened now rather then it happening right when we got home. Atleast we can continue to work on her feeding when otherwise at home she may really put up a fight. She has lost almost a pound since her teething has started. It is horrible when she loses weight because we fight so hard for every ounce. It is like all the times she would erupt and throw up all her formula at home, or anywhere we would be, if she cried too hard or managed to put something in her mouth. All we could do is watch all the formula hit the ground or unfortunately a person and see all that energy we had spent gone in a second. Now it is almost worse because she is getting nearly double the calories and still losing weight. I am trying to stick in there especially since the weekend is coming and she will go back on night Pediasure feedings and take a break from the intensive feeding sessions. One great piece of news that made the exhausting day better: Vivian started pointing!!!!!! This is a really big deal for us. She is communicating more and more these few weeks. I kind of feel like since she is getting some real food she has come alive and sprouted teeth, walking more, pointing, and pressing buttons on toys!

June 22, 2006 Day 11 Vivian was still uncomfortable today. She did eat but not as well as Tuesday. Ben plotted out her progress on a graph which helped to show that despite her little setback over the last two days she has still made good progress. In fact we get to sleep through the night since she ate enough to have only one night feeding. We will enjoy this very much after weeks of waking up every few hours, but we will be back to night feeding tomorrow since it is the weekend. I took the first step in creating the foundation today. The Article of Incorporation is on its way to the Secretary of State's office. We also got word that when we return we will be meeting with a retired CEO of a huge company who has a lot of corporate and fundraising connections. It will be really nice to start helping other families. We met a family at the clinic who had to buy their son's feeding tube on Ebay since they are self employed and their incurance pays very little for "durable medical equipment" or feeding supplies. The son uses the same tube that Vivian used to use before she ruptured 16 of them last year! The parents paid almost $200 for the tube. If we were in the same situation it would have cost us $3200! The worst part is once we got Vivian's situation resolved the manfacturer and the feeding supply company replaced her broken tubes. So I have about 14 sealed boxes of feeding tubes sitting at my house that I have been reluctant to get rid of until I found someone to use them! When this foundation starts I really want to help parents get the supplies they need by either suppling it to them or finding parents like us with surplus items.

June 23, 2006 Day 12 Well today finishes our 2nd week. I had really hoped Vivian would be a champion perfect eater so next week Ben could teach me how to feed her and we would be home by Fourth of July, but that is not the case. Vivian has showed some signs that she is improving. She is still not choking or gagging. Yesterday at lunch I gave her a tortilla chip and it went somewhere without her gagging! So we will continue here. At some point I may bring Vasken to stay here. I just can't imagine being apart for 6 or 7 weeks even though he seems just fine at home. We will take it one day at a time. This weekend we are back to tube night feedings and trying a little by mouth. The foundation website was created today!! It will be www.feedingfoundation.org. Give it some time to get up and running, especially since we have to wait for so much paperwork to process with the state. I am really trying to get the word out to people who have excess feeding tube supplies or just regular new baby food items (even a jar of food). I want to start stock piling items because on the website I am going to have a section of items immediately available to families. I know I have a ton of things, so someone else probably does too! Why not get it to the people who are paying for it and shouldn't be.

Vivian getting water
through her tummy.
Not as bad as it
used to be!

Yes! That is a
cracker in her hand
and mouth!! No more
gagging!

Making happy faces
to people in the
resturaunt!

Getting some water
from Daddy!

Taking a break 6/25
on the pier in
Santa Cruz!

Being funny with
daddy's glasses!

Showing her new
pointing skills!

June 26, 2006 Day 15 We had a good weekend. Armen surprised us by flying up again for a visit while Vasken had a fun weekend with his Grandpa. I was a little discouraged after Friday. But on Saturday Vivian made me feel better when she ate pretty well for me. She was opening her mouth and not crying. She has started doing this spitting thing, though, so most of the things that go in tend to come out. We took a little break on Sunday and drove the 35 minutes to Santa Cruz. It was freezing!! It was especially interesting for Armen to go from 110 degree weather, to 80's, to cold 60's. The weather in Sunnyvale is great, but the marine layer was in at Santa Cruz and made it very chilly. It makes the time go easier when Armen visits on the weekends. Vivian especially loves seeing him! We really missed Vasken. The plan this week is to work Vivian hard to get her volume up and refusal behaviors down. I really hope it will take just 2 more weeks. My plan is to bring Vasken here the last week so we can imitate the hectic surroundings, that home can often be, to make sure Vivian can still eat when he is running around or doing what he does. It will be good for Vasken also. He was a little freaked out when he saw her crying and being fed over the monitor last time he visited.

June 28, 2006 Days 16 & 17 Vivian was doing her "hold me" routine last night until 11 pm. By then I hadn't eaten anything and was exhausted so I didn't get a chance to write. Yesterday was a milestone. It was Vivian's first day eating only by mouth, ever!!! Yeh!!! The plan is to start working weekends also so that she starts to understand that hunger + eating = full tummy. When we go to the clinic she starts whinning as if she knows it is time to eat. We are now working on increasing her volume, then next week possibly bringing me in, then working to teach others to feed her in different environments all in an effort to bring her home. Once we do get home the hard works continue. We will have to monitor all of Vivian's calories using a book that breaks down foods by calories, fat, etc. and by using a scale to measure all spilled food. Right now Ben makes a concoction that is 21 oz. out of that she only gets in about 5oz. By the time we go home it should be a lot cleaner! I bought Vivian a sippy cup. Ben had given us some Carnation instant breakfast. She took a few sips of it without gagging. I even gave her the cup while she was laying down and she played with it until she fell asleep. We are still seeing progress, the only bad thing is her weight has not gotten better. She hasn't lost, but she is not gaining. She should have been 18 lbs. 6 oz. on July 4th if she gained like she has gained every month, but she is staying at 17 pounds 10 oz. which is lower than when we started. The week before we left she was 18 lbs. 3 oz. Supposibly it is common for gtube kids to lose weight, but it always worries us. We will continue the hard work!

June 29, 2006 Day 18 It was a rough day yesterday and this morning. Vivian started taking less and less and fighting more and more. Ben had to review videos from the best sessions to see if something had changed. We found that Ben's positioning and the way they were making the food had changed a little. So they changed things back up and we had a good dinner session. Vivian lost more weight than I would have liked. So we are monitoring her calories and put her back on the tube. I even tried to give Vivian her old bottle again. She refused to have anything to do with it. This made me feel even worse since I thought if things didn't work out here I could atleast go home and go back to our same routine. Ben is not discouraged he is just surprised that she is taking this long. I'm not. I told him from day one that this was not going to be easy. This weekend we will not be doing feeding with Ben, maybe next weekend. I feel like I should be looking for an apartment! I just can't imagine leaving before I know it's done. It is amazing though that when I am at some of the lowest points in my life something intervenes to show me it's not so bad. Today at the clinic Ben's 9 am patients were a set of 6 or 7 year old boy and girl twins both with feeding tubes, both with Cystic Fibrosis. The fact that their mom was happy and laughed made me feel like there is no way I should be so upset. I can't imagine being in her position.

June 30, 2006 Day 19 Today was a little better. She did the most ever at lunch, 7.9 ounces. So we are looking forward to Monday and hopefully a great week 4. Ben swears he knows how to work with Vivian's feeding behaviors. I have to admit she throws something new at him everyday. It is amazing to see some of Ben's little clients who seem to have some mental handicaps, but when it comes to eating they know what they like and don't like. We took a break tonight and drove up to Cambria to visit our family. It is gorgeous up here. I don't know what we will do when we return to 100 degree weather after being here (71 today). So the saga continues! It is such a roller coaster! It feels like months since we are spending 4-5 hours at the clinic throughout the day. It helps to have Armen come visit and see such progress in Vivian when I am with her everyday and it is hard for me to see. I do know that she has made some progress that is already changing our lives for the better.

July 1,2,3 Days 20, 21, 22 Sorry we have been running around the last few days. Everything is going well. We were in Cambria and San Luis Obispo visiting family on Friday night and Saturday. It was a great test for Vivian since she was surrounded by people. She still ate pretty well and also munched on some mango, blueberries, and a peanut butter and jelly sandwich. My cousins were pretty skeptical about Vivian's "eating problem" after they saw her doing pretty well! We have decided that Vivian's new anthem is Weird Al Yankovich's "Just Eat It" song! We drove back into San Jose Saturday evening and picked up Armen and Vasken. Sunday we went and walked around Monterey. It was incredible since I had coincidently just finished reading all of John Steinbeck's short stories. This past weekend may be our last weekend to get out and about because Vivian is back off her tube. This means that we will be working with Ben on the weekends also. We will possibly be done in about 2 weeks. Today she ate 8.5 oz at dinner and 1008 calories total today!!! She also munched on some goodies everytime we ate. The best part is that she learned how to DRINK FROM A STRAW!! This is HUGE!!! It is amazing how her mouth muscles have really started to work and her tastes have come alive!!! For the next two weeks we will be working on Vivian being less messy during meals. This isn't normal mess. Ben and Jeremiah make 30 oz. of food and she generally only gets 5-6 oz. So 25 oz. is everywhere. We will also be working on teaching me to feed her and getting her ready to come home. We are not giving up on spoon feeding or drinking from a cup but we may have to go home for a while first and come back to do some fine tuning! We have already found parents with feeding supplies, they have been holding onto, that are willing to donate them to the foundation. So we are on our way!

A very messy
Vivian!

A beautiful day at
one of Los Altos parks.

Being silly! It has
been too cool to swim.

Family day at the clinic.

Vivian with a half eaten
cookie in one hand and
ice cream in the other!

July 4, 2006 Day 23 Happy 4th of July to everyone!! And happy 18 months to Vivian! This is day two of Vivian being off the tube! Ben has officially said he sees the light at the end of the tunnel. We are probably 2 1/2 weeks until we go home. Vivian did 1148 calories by mouth, not counting her cookies and other goodies during the day. So she is only getting water through her tube. We will not be working with Ben this weekend because he had prior arrangements so we will begin 7 days next week. The rest of the week we will focus on cutting down the spilling and refusal behaviors. She is making quite a mess because she spits out a lot of food. Ben is trying to get her to swallow every bite so we don't have to make so much food and have such a mess. Vasken is officially a San Jose resident! He will be staying with me probably until we go home, but until next weekend for sure. He likes to go to the park, swim, and play with Vivian. He probably enjoys being out of the hot desert weather too! When Daddy &Vasken are here Vivian is like a new person. She plays and walks around. But she also crys a little when Ben takes her in to eat. She is a real daddy's girl.

July 5, 2006 Day 24 Everything is progressing nicely. Vivian did 1228 calories today. Ben is going to be working on cutting the mess and the fighting. The puzzling thing is that Vivian is not gaining weight still. She eats a ton of food with Ben and then eats cookies, rice, yogurt, or whatever we are eating. I don't understand what is going on. Another of Ben's clients has run into the same issue. We think there may be some correlation between children transitioning from Pediasure to food and gaining weight. We will give it a few more days. It may be from her being so active also. My cousin is visiting for a few days, it really helps in the loneliness department and with having Vasken here. As things wind down though, I will be missing the nice cool weather!

July 7, 2006 Days 25 & 26 What a roller coaster. We were having some great days and then Ben decided to change up the food a little and decrease the volume to decrease the mess and Vivian started to eat less. So I feel like I can't even be happy about our progress because the next moment can be so disappointing. I keep trying to recap and think of the positive, Vivian eats a lot better now. She has been off the tube this whole week, and she is sucking through a straw. The negatives are just so overwhelming it is hard to handle; we are still here (end of week 4), she has not gained weight, somedays she acts a little too whiney and lethargic and I wonder if she is not getting enough food or being worked to hard. Her nutritionist and Cranialfacial doctor wants us to check in each week to make sure Vivian is still doing ok because they are concerned about her weight. I just wish there were more people out there who have transitioned their kids from feeding tubes and had weight loss issues. The one mom I know here has had a similar problem. Her daughter is 2 months off the tube and is barely gaining weight. Maybe I am just overwhelmed. I felt so hopeful when we came for the evaluation and Ben told us she would be eating by spoon and drinking with a cup in 3 or 4 weeks. Then it was using the cup to eat and water from the tube. Now it is having to feed her 4 times a day with a cup, a huge mess, and have to weigh everything. We would be even more prisoners in the house then we already were. Not that I wouldn't spend 24 hours feeding Vivian if that is what it takes, but it is physically impossible. So we will close the chapter on this week and take a break back in Cambria for the day. Armen will be making his possibly last trip back on Saturday to take Vasken home. I will be writing the last check of all our raised money next week! I know it has changed our lives, it just feels like we should be done. Nothing is perfect and Armen and I have always said however long and much it takes we are not giving up!!

July 10, 2006 Days 27, 28, 29 We had a nice visit in Cambria again. This weekend was very special because it is the first time all 6 of the great- grand children have ever been together. It was quite the day with 6 kids especially since 4 of them are 1,2,3, and 4! We also took the short drive up to San Francisco to show Vasken and Vivian the Golden Gate Bridge. It is amazing that 3 years ago this week we took a tiny 2 month old Vasken to San Francisco. Now 3 years later we walked to same area with our two children. You can never expect where the world will take you!! Now to business, today we started the last leg of our visit at the clinic; integrating me. At breakfast I sat and observed the feeding. Then at lunch and dinner I traded off with Ben and tried to feed Vivian. She broke a new record and ate 1295 calories and 22 ounces!! I was reading over the first few days of the website and remembering when an ounce was a big deal! I am very grateful that Vivian is off the tube and not gagging or thowing up. Some may say I am never happy, but the cost of my happiness with Vivian will be when she has the tube out permanently and safely, she is eating normally, and I do not have to count calories and ounces!! When we go home I will be making the same smoothie type food for her. We will work on decreasing the mess (we will have to weigh everything to get an accurate count of how much she actually at), making eating more enjoyable for Vivian (she still whines a bit and kicks her legs), decreasing the time (it takes an hour to feed her not counting preparing the food and cleaning up), and making some homemade foods for her (I tasted her smoothie and it actually tastes a little like peach pie filling). Although on Friday I sounded a bit discouraged I am thankful for her progress. Just being able to take her out and having her munch on food and not throw up is wonderful. One person commented that they wished their child would sit so well in a restaurant and eat! It felt wonderful and so new to think she was talking about Vivian while having no clue how she was a short month ago! The goal for this week; get Mom to feed Vivian on her own and go home!!! We are hoping things work out and we can go home Saturday, but we do not want to push it!!! Keep your fingers crossed and the eating vibes coming in!!!!!

July 11, 2006 Day 30 Today is exactly 1 month since we started our work here. It has gone by very fast. All I can say is it has been a rollercoaster or like floating on your back in the ocean over waves. Some waves have been bigger than others. At times it felt like things were out of my hands and I had no control, especially when we first started. Now the tide has calmed a bit and I am regaining control. Vivian did 27 ounces and 1600+ calories. We are now having to make sure she doesn't get too much. The plan for the rest of the week will depend on tomorrow. I will work with Ben to feed Vivian breakfast and lunch. I have started making the food and doing all the calculations with the occasional help of Jeremiah and Ben. At dinner tomorrow I will feed Vivian by myself. I am nervous that she will not get enough and I will not do well. I have to remember that it is a process. I will continue feeding her alone in hopes that I can do 7-9 ounces each feeding and we may be able to go home Saturday. I am not pushing things. I want to be over ready!! Armen even suggested that Ben and Jeremiah sit in the play room and watch on the television as I make the food, feed, and clean like I would at home; alone. It will be funny to be inside while they are out, a change of roles. I am going to take it one meal at a time. I am starting to have that summer camp feeling; just when you start having fun and making friends it is time to go home. Although it has not been fun like summer camp, the clinic is a safe place filled with others like us. Everyone I have met has unique stories, but all the common feeding issues we experienced. I will miss my new feeding family! I am meeting so many new families in similar situations as ours. It helps to reassure each other that THIS IS HARD no doubt about it! It has taken many of us years to appreciate our special children and that makes us all feel horrible! The years spent just keeping them alive has robbed us of so many of the "normal" experiences. Many of us have shared stories and heartache that can only be understood by each other. It has been difficult to go to many chat rooms geared towards g-tube kids because I am not satisfied with Vivian being tube fed! I'm sure they are not either, but the families passing through Ben's clinic are putting their lives, money, and time on the line for one thing, to see their children eat. It makes us that much more connected to have such a common goal. I also hear stories of families not able to come because of money and it breaks my heart! Our next journey will be to help others not have to worry about that!

July 12, 2006 Day 31 We have good news to report. I fed Vivian by myself today and did well. The first feeding took about 63 minutes and she did 6.9 ounces. The dinner meal was even better, 58 minutes and 8.89 ounces. It makes the transition home seem a little more reassuuring. We are planning on driving home on Saturday. The last test for me will be to make the food, feed her, and clean her up by myself. This may not sound like a big deal but it takes atleast 10 minutes to prepare her food because everything is measured to the gram. Then once we are done we measure everything for spillage. Everything is completely accurate. Vivian did a total of 23.23 ounces and 1287 calories. She was also being a little crazy today. She took a 15 minute nap and was awake from 7:30 am- 10:30 pm. She is happy and playing. Her favorite things are books and climbing into chairs. She is still putting everything in her mouth so we have to be careful, but very typical for little ones. Atleast now it doesn't make her gag. So we are stocking up on feeding supplies since what we put in her foods are not all easily accesible. Her food consists of 2 packets carnation instant breakfast, milk, 3 jars baby food (Beech Nut First Advantage which is not widely stocked), some Thick-It (food thickener),and doucal (a calorie booster). Her weight has been a little more consistant this week. As long as she is active and maintaining her weight I am trying not to worry too much. This is such a huge change. Two more days of hard work left here and then the hard work starts at home!

July 13, 2006 Day 32 The hard work continues. Vivian did well today. She did an 8 ounce and two 6 ounce meals. I would really be happy if she had done three 8 ounce meals but we are taking it one day at a time. The feedings go well until we are 40 minutes into it and my back starts burning from standing and leaning over her for all that time. I feel like I can't do the whole 60 minutes, but then I keep thinking about how well she is doing and try to go one. Dinner is always good because I know it is the last meal of the day and we can relax until the next day. I hope Vivian will be down to 30-40 minutes soon. We just learned that my nephew is a bone marrow match for his brother. This is wonderful news. The match should take place in a few weeks. We pray for a safe transfer and recovery.

July 15, 2006 Days 33 & 34 July 14 was a very busy day. We were at the clinic almost all day making sure everything was in order for our trip home. It was a record breaking feeding day, almost 28 ounces! We had a WONDERFUL going away dinner at our new friends home! We enjoyed some home cooked Indian cuisine. It is hard to leave our new feeding family. We will look forward to seeing them in a month when we fly back out for a check-up. Armen flew in Friday night to help us load up and drive home. How nice it was to not have to do that alone especially since my items have seemed to multiply. It took us about 7 hours. Vivian had an interesting lunch in the car. With the help of a gas station hose we got back on the road just fine and clean again. When you know you have to manage it is amazong how resourceful you can get. Vivian seemed to put up a little extra fight during her dinner meal. It was a little later then usual and being home was weird I'm sure. But we managed to get in 7.75 ounces! She was really clean too! I'm sure I could have done more but I was worried she had eaten too much because of how clean she was and how much she was fighting. I am sure we will do great tomorrow! It took her no time to go to bed after a warm bath and some walking time rediscovering the house. It is really good to be home. Little things like the extra pad of the carpet compared to the flat carpet at the hotel are really noticable as I walk around putting all my things away! My plan for this website now that we are home is to do weekly updates, probably on Sundays. We have a lot of feeding work to do as well as foundation and getting back to our normal lives. I was able to bring some more feeding supplies home that were donated by other parents. So I will get the foundation website up soon and start distributing what I can!

July 23, 2006 I wish yesterday was Sunday so I could be more positive, but the week ended with Vivian losing even more weight. She is 17 pounds 2 ounces. We had been doing so well, getting her time down to about 40-45 minutes that it is hard to be on the verge of putting her back on the tube. The thought of that breaks my heart, but I can no longer watch as she loses more and more weight. She is acting normal and walking more and more everyday, but for some reason her system needs the extra Pediasure. Possibly by tomorrow or the next day she will eat her three meals and then get the Pediasure through her tube right when she falls asleep or when she is about to sleep. I guess at some point it will work out that she can just eat by mouth, but right now she has an ear infection, teeth coming in, walking, and this new eating routine and it is just too much. We'll let you know what happens.

July 30, 2006 Week 2 after clinic- I am glad to say things are a bit better since last week. Vivian's ears are all better. We are being very careful to make sure food and water during bath time are not getting near them. Vivian is a walking and eating maniac. She is all over everything. We had to replace all the old child locks on the cabinets because she was making such a mess. Vasken was a great helper. It feels as the kids have aged a year in the last month. They play together and seem to be more content. Vivian has unfortunetly taken to Vasken's sleeping schedule. She goes to bed much later then the usual 8pm. She got so used to being held and rocked to sleep that now it takes a while to catch her and settle her down. All that food is like steriods! She didn't even nap today! So the big news is that Vivian has gained some weight. Not enough to plan a parade, but something. Her top weight was 17.10, today she was 17.7. We hope this is the time she really starts to pack it on. We only have a few weeks until she goes to her GI doctor. It would be nice for her to be atleast 18 pounds. She had a wonderful feeding this evening; 27 minutes 9.39 ounces! Her breakfast and lunch were a little on the low side on volume; 7 ounces. And on the high side of time; 45-50 minutes. She is still a mess and it still takes some time to make and measure all the food. It takes a lot of will power to get up at 6:45 to begin the food making and chores for the day. Any variation really throws everyone off. My fantasy these days is to sleep in, lay in bed all day and read a book, and sleep some more. Hey we all can dream! So the saga continues. The latest is that we have to take Vivian for a special psychological review to determine if she is delayed enough to receive MediCal through special deeming. The process continues. The final total for the clinic, hotel, and expenses: $22,000. Thank goodness for everyone's help. It feels like one of those credit card commercials; Price of feeding clinic: $22,000. Price of watching Vivian eating and drinking: priceless. It is really the truth.

August 6, 2006 Week 3 after clinic. A good week. Vivian is back up to her pre-clinic weight of 18 pounds. It felt so good to see that scale read 18 again. She has gained a pound in the 3 weeks we have been back, that is the most weight she has gained since birth. We have about a week to pack on some more pounds before we see her GI doctor. The best news is that we are down to 20-30 minutes of feeding time. No more 70 minutes!!! The mess is still there. We have gone from 800 grams (about 30 ounces) to 600 grams (just over 20 ounces) of food. This means a lot less mess. We have also been making recipes that do not require the Duocal (calorie booster) or Thick-it. Decreasing those two items would bring the cost down and additives down. Right now it costs about $30 a day to feed Vivian. I use a can of Duocal a day that costs about $25 plus all the baby food, most of it getting wasted. So we are in a good place. I am really happy with the progress we have made in these few weeks. Vivian is walking all over and such a happy little person. Our next step is to transition her to using the spoon and drinking more fluids in order to decrease the tube feeding of water. After lunch today she drank over an ounce of juice in seconds she was so thirsty! We are planning on a day trip to San Jose August 15 for a check up and some fine tuning. Vivian has begun to arch when she is eating so we need to work on stopping that. Otherwise her behaviors are good. I keep expecting her to swat at the spoon or really fight. Sometimes she is so hungry she sits really well. Yesterday we had a 20 minute 9 oz. meal. It was great! Now we just have to work on her sleeping! She still fights to go to bed!

August 13, 2006 Week 4 after clinic. Another good week. We have been able to decrease the volume of Vivian's food. That means a lot less mess. The time has stayed anywhere between 20-30 minutes. Sometimes I feel like I havn't done anything, then I turn and see that her cup is almost empty! Her weight has stayed almost the same, just over 18 pounds. As much as we try to keep her from burning those calories she is everywhere. Vivian's newspaper follow up story was in the Daily Press today. It can be seen on their website www.vvdailypress.com. I hope everyone is able to understand just what a life changing experience this has been for all of us. I am actually able to enjoy my baby girl and not dread every moment leading up to her next feeding. We leave Thursday for San Jose. We are flying up just for the day. I really hope she is able to eat by spoon a little. She ate some blended rice today that was still pretty chunky. She usually waits for me to shovel it into her mouth, but she was actually enjoying the taste and texture today. We are praying for a smooth time at the airport. It is always difficult to fly with an infant, but flying with Vivian makes it a little harder. I am forced to bring Pediasure with me. Whether or not they allow it is another story. We should be allowed to have it, but you never know. The website for the foundation is up and running! It is www.feedingfoundation.org. It is amazing how many supplies we have gathered. It is such an amazing journey!

August 20, 2006 Week 5 after clinic. A very busy week. Vivian started to drop in weight a bit in the beginning of the week, but made a really good weight gain to end the week at 18.5 pounds, the heaviest she has been so far. Our life is really dictated by the ounce! She had a GI doctor appointment on Tuesday that went really well. Her GI is happy with her progress and sees no reason why we cannot remove her tube by next spring. I have about six months to make sure she is able to retain fluids sufficeintly on her own. On Thursday we flew back up to Ben and the Los Altos Feeding Clinic. Ben was very happy by Vivian's progress. He even videotaped me feeding her to show other parents. During the dinner meal Vivian ate 4.45 ounces by spoon in 10 minutes. This is really rare, but she is doing better. She usually does 2.7 ounces which is good too. We now do the first 10 minutes of the meal by spoon, weigh, and then continue by cup. Once she is able to do 3-4 ounces consistantly by spoon we will extend the spoon time to 15 minutes and then in increments of 5 minutes until we are all spoon and less mess!!! Everything is going well with the foundation. The website is up and had about 700 visitors in the first week. We have already begun to distribute some supplies to parents in need of them.

Playing at the clinic!

Glad to be back with
brother!

At clinic for a checkup.

Having fun with brother!

August 27, 2006 Week 6 home from clinic. Vivian is making wonderful progress. It is amazing. We have lived the last couple years watching everyone else have amazing events in their lives when all we wished for was our daughter to eat. Every falling star, head-up penny, stray eyelash was a wish for a normal meal. We are getting there. Vivian has had the last 5 meals by spoon. Today she only had to take 1 bath like a normal child! Our routine is to make the large quantity still. I separate about 10 oz. Into a bowl. Weigh her bib and the bowl. I set the timer for 10 minutes and begin to feed her. After 10 minutes I weigh again and subtract from the original amount. A few days ago she was doing about 1.7 ounces in the first 10 minutes. Now she does about 2-4 ounces. In 3 or 4 ten minute sessions she finishes anywhere between 6-8 ounces. This 6-8 ounces is a bit different because this is to the crumb. When we fed with the cup, it would be impossible to remove all the food from her hair and get every last drop. With the spoon there is literally no mess. Her weight: 18 pounds 9ounces! 1.7 pounds since we have been home! Life is great, but we never let our guard down. We will be counting and measuring for a while still. Now that the feeding is getting more consistent we can begin to measure the liquid in hopes of having the tube removed in spring. Vivian has also started to do better with her speech. She started saying “cookie” today. It is in her own little way but you can tell she is saying it. She is also understanding a lot more. I asked her to close the cabinet in the kitchen and come to the front door. She went into the kitchen and closed it and then walked back.

September 3, 2006 Week 7 home from clinic. Vivian is still making good progress. We are using all spoon for meals. She takes a little extra time in the morning. Like most people she is not a big morning eater. We are going to try changing the consistency of the meal to make a difference. Her weight gain has slowed a bit. We are hoping to have her at 20 pounds by the time she is 2 years old. Most babies are 20 pounds or over by a year old. Vasken was born at just under 6 pounds and was 22 pounds at a year. Vivian had a vision appointment last week. Her vision is within normal range. She will continue to have appointments every 6 months to watch her coloboma that could increase the chance a retinal detachment. So far so good. The next big appointment is at the end of the month when she will be sedated for a hearing test. She seems to hear pretty well to us, but we need to be sure she is not losing any hearing.

September 10, 2006 Week 8 after clinic. Vivian is now 100% spoon fed. The morning feeding is a bit more difficult. We have started to give her scrambled eggs and other choices. It will be no time until she is eating steak and eggs! Armen actually fed her lunch very well today. We keep in constant contact with Ben at the Los Altos Feeding Clinic. We are also staying busy speaking to new parents interested in the clinic. The foundation is now international. We received an email from Belguim asking for supplies. It is amazing what a difference a year makes. We may have more bumps in the road left for us, but having Vivian eating and meeting so many parents in similar situations.

September 17, 2006 Week 9 after clinic. Vivian had a few rough days. For some reason she did not want to eat. We are now using the cup for breakfast, but are still having success with the spoon for lunch and dinner. We are at that point where we need to find a system that sustains and maintains Vivian. Her weight has stayed at about 18 1/2. It is really important for us to stay consistent and keep up with her meals. This week Vivian had a speech evaluation and saw an endocronologist. The Speech therapist has decided to see Vivian only once a month since she is getting so much support in home. The Endo. doctor ordered blood to see if her thyroid and glands were working correctly. She is obviously very small and there is a chance that she may need growth hormone. At this time we are against the hormones, but will make our decision based on the results of the blood tests and see how she grows over the next year. It is important for us to watch how her body changes since she is eating more normally. She grew an inch and a half in a month, if the nurse measured correctly. In the same day she can have a 3 inch inconsistency depending on who measures her! I am starting to feel scared that in our quest to make her normal as soon as possible that something will be overlooked. Our guard has come down greatly since she has been eating, but I do not want to miss anything. It is hard to unwind after being on edge for so long. It is nice to have people over or go out and not have to worry about her throwing up. She is walking everywhere and now I have to worry about her getting the dog food! I hear there is good protein in it in case she does get a hold of a piece!

September 25, 2006 Week 10 after clinic. We are off a day after a long weekend. Armen and I actually had our first evening and night without kids! We had a wedding in Palm Springs and we were able to leave Vivian. She has been eating lunch and dinner so well she even ate with her babysitter. So far her nurse, teacher, OT, and now a good friend of ours has fed Vivian with the same results! It is great to get a break, and also great to feel that we have made real progress. This morning Vivian had a BAER hearing test. We were up VERY early to get her to Loma Linna by 7am. The tech said everything looked good but we should know the final results on Friday at her genetics appt. It is important to check her hearing every year because of the possibility of degenerative hearing loss. So everything is going well. We hope to return to San Jose soon to visit our friends and check in with Ben at the Los Altos Feeding Clinic.

October 1, 2006 Week 11 after clinic. Everything is still going well. Vivian had her hearing test Monday and genetics appointment on Friday. Her hearing test came back normal, which is wonderful. We will do an annual check to make sure her hearing stays great. Genetics was very happy with her results at the clinic and all our hard work over the last 20 months. We will be seeing genetics once a year for check-ups and to follow the progress of the Kabuki Syndrome blood tests. As of right now there is not an isolated gene that would make a blood test possible. All diagnosis is made on characteristics. We feel confident after seeing one of the leading specialists at Stanford that Vivian does have Kabuki Syndrome. We are now all about maintenance, maintenance. Vivian is up to 19 lbs. 5 oz. and doing well. She has her 6 month check-up with ENT this Thursday. We predict everything will be fine since we are able to keep the food out of her ears by using just the spoon. We are planning another trip to San Jose possibly at the beginning of December or even as early as late November. We will be meeting with some support groups and families we have met through the foundation and the clinic. We would also like to see if Ben is able to help with Vivian's milk drinking and breakfast intake. She is eating only about 4 oz. at breakfast and refuses to drink any milk. She drinks fine and gets milk in her food, but it would help to get her drinking milk more often.

A princess in the making!

October 8, 2006 Week 12 after clininc. We are still doing great. She is officially 19 1/2 pounds. Maybe we will hit the big 20 before her second birthday! We are trying to decrease her fluid intake through the tube in order to transition her off the tube by spring. We are flying back to the clinic. This time to help. Vivian has done so well that she has become a model for others. We are going up to make some of our recipes and show Ben her progress. Her breakfast is still not great and it would be nice if she could drink milk. We will be up there from Tuesday evening until late Thursday. We are hoping to meet with all the wonderful families we have met through this process!

October 15, 2006 Week after clinic. We had a great trip up to San Jose. Hopefully our presence helped a bit with some of the cases. It is amazing to see the progress several other previous patients have had. We are working on finding new breakfast ideas for Vivian. She is a little sick of bananas and oatmeal. We have made a very rich rice pudding type meal that she seems to like. She was 19 pounds 15.5 oz today! She always holds onto that last half ounce before she goes over to the next pound. How wonderful it will be to see the 20 on the scale. I am so glad she will be 20 pounds before she is 2! Hopefully I did not just jinx anything! She had an Inland Regional evaluation today. In some areas she no longer qualifies because she is doing so well! they are really trying to stretch out her problem areas so that she will not lose any services. Some of the skills are interesting "climbing onto an adult chair". If she wasn't so short she could do it without any problems! She is doing well and we are enjoying everyday. The time really seems to be passing fast!

October 22, 2006 Week 14 after clinic. Vivian had a little setback this week. She was so close to her 20 pounds, then had an off day and lost almost half a pound. It is incredible how sensitive her system is. She was late taking a nap and it threw off her whole feeding schedule. There may have been other factors, like teething, since she had an upset stomach also. We took her to have blood drawn for her growth hormone levels last week. She is so little that we are going to have to take her every week for a month to get all the blood needed for the tests. She only has one good vein to draw from also. Either it is her size or having has so many IV's that she is unable to have a sufficient amount of blood drawn. Otherwise feeding is going well! As far as we are concerned there are no more bad days as long as she is eating and drinking! She actually robbed Vasken of a few pieces of hot dog yesterday!

October 29, 2006 Week 15 after clinic. Today was a very monumental day for Vivian. It was her first day since birth that she has not used her tube for anything! She had a few days of upset stomach and we began to think she was getting too much fluid so we began to cut back until she was getting nothing at all through the tube. We shall see how she does. She walks around with her Cinderella sippy cup just as happy as can be. She started doing a little better at breakfast. On Friday she did really well eating. She ate 6 .5 oz. in about 10 minutes for breakfast, which is amazing. Then her normal quick 8 oz. for lunch and dinner. She was at her 19 lbs. 15.5 oz. again and then back peddled a little again. It always feels as if we are so close to getting her weight up and then something brings it back down. I know this is probably the case with most children and she is unique because she is weighed everyday. It is just a constant reminder of the ups and downs. To make things even more interesting Vasken has developed a stomach bug. He is unable to keep anything down. We were in the ER last night. The doctors did not seem too concerned and said it owuld pass. Of course all I can think about is going through it with Vivian because it is impossible to keep them apart or to try to disenfect every square inch (although I haven't given up trying). We shall see!

November 5, 2006 Week 16 after clinic. It has been one week since Vivian has been off the tube. She is still a little off in her eating. Lunch and dinner has started to be a fight also. I am not sure if she is having her own version of Vasken's virus or what is going on. Vasken and Vivian both went to the doctor on Friday. Vasken for a final check up on his 2 weeks of being sick and Vivian to make sure she wasn't catching anything. Both checked out fine and left a little upset after a flu shot. To make matters more interesting Vivian had an adverse effect from the flu shot. She slept for about 20 hours on Saturday. We went out of town this weekend for a family birthday party. It makes it a whole lot easier to travel with all the necessities from home. We always travel with her food prepared, her highchair, and a microwave. We tried using a water warmer but it took forever to warm up the food and was dangerous to have around the kids. It takes a little more effort but is really worth having some of the bigger items. So we will continue to work on her eating. We are going to try cutting back her snacking and watching everything even more carefully, if that is possible. I have come to believe that our life is not meant to be carefree. All that needs to happen is for Vivian to be a great eater. I can handle all the other things; jury duty, dogs digging holes in the grass, a red sock in the whites. This feeding stuff really gets to me. My whole day can be going great and Vivian will have one bad meal and it all comes crashing down. I just want what is best for her, but it will kill me to have to go back to that cup. Today was a little better, only 3 oz. less then great. That scale haunts us. The longer it stays at 19 the worse I think I will feel.

Some of our wonderful
feeding moms friends!

Feeding time at the
clinic. 3 at once!

Drinking out of her
favorite cup

Getting ready for
Halloween

Dorothy never looked
so cute!

November 12, 2006 Week 17 after clinic. Vivian is still off the tube completly. She has still been a little off with her eating, but seems to be getting back on track. It seems more and more apparent that the terrible 2's are coming. Some of her behaviors are more and more because of her strong will rather than anything physical. The change in weather seems to make a difference. I wake up atleast 2-3 times a night to make sure everyone is tucked in well. Despite the heater, blankets, and warm clothes I worry about Vivian most because she doesn't stay covered. If she gets cool her body will burn more calories to keep her warm. We can't spare any calories! She has been doing well eating table food. She uses a lobster fork really well to feed herself. The small fork is perfect for her little mouth. She has also started to say "Spongebob" of all things. This adds to her vocabulary of dog, cookie, baba, mama, and her signing of more and play.

November 19, 2007 Week 18 after clinic. Things are about the same still. Vivian is all over the place, munching and drinking away. She is able to eat just about anything. Her Metz Mama (Grandma) has really started to enjoy making her food and feeding her. We are so lucky to have such a fantastic cook in the family. Her weight is still just under the 20 mark. I would never have expected for her whole system to have such a shock from taking her off the tube completely. She will just have one more possible shock time when the tube comes out. For now we are fine with leaving it in and not pushing it. By the time it comes out,sometime in spring,she will have been without it for well over 6 months. It is amazing. She still hates drinking milk. But will drink just about everyhting else. We make sure to put as much milk and formula into her foods. She is still babbling up a storm. She really lets you know what she wants and when she wants it!

December 3, 2006 Week 20 after clinic. I skipped a week not only because we were moving, but also because I am so frustrated about Vivian's weight. But I have to say we did see 20 pounds 1 oz. on the scale today. YAAAAAHHHHHH! Of course there is always a little downside. She seemed to be a little constipated today so the weight may be high because of that, but today we will take it!! We'll watch the stool for a couple of days. She is drinking well, but sometimes the food gets a bit rich. Usually it has the opposite effect on her. We also figured out that she is very lactose intolerate. This is a family trait, but may also be from all the high calorie formula and lack of milk consumption. We have another eye appointment in a few weeks to make sure there is no change in her eye sight. Other then that life is speeding by. The holidays have come so soon. Life is so much sweeter now that Vivian is better. She is not perfect yet with her eating, but great enough for us! All the hard work to get her to eat now is nothing in comparison to her 18 months of not eating. Her Nana fed her for the first time today and said that was her early Christmas gift. It is the only gift I will ever need.

December 17, 2006 Week 22 after clinic. Vivian is just recovering from a bad ear infection. She had a few days of high fever and even threw up. So of course we lost our 20 pounds. She went through it well. We are still off the tube, but after a week of poor eating just making our way back to regular meals and the weight pre sickness. It would of course be easier if she had the extra weight to lose. Otherwise we are working away with her development and the foundation. In her last review she was very close to age level in all areas. Of course the tests are hard to believe when we encounter a child the same age as Vivian, almost double the size and talking up a storm. There are differences, but we are very fortunate to have Vivian, especially with her eating!! As the holidays approach I can't think of anything I would ever have except her eating. One other day still looms in our future and that is the day the tube is out. That day will come in due time, but I know it will be amazing. Thank you all of you again for giving us such a wonderful gift and all the support and prayers.

January 26, 2007- This website has been acting up. But here we are. Things are going very well. Vivian is maintaining her 20 pounds really well. Our next issue is the growth hormone. She finally got all her blood taken. The tests they asked for are drawn from a normal child in one dose, because of Vivian's size it required three different draws. The lab techs always cringe when they see. Vivian is a bid 2 year old girl now. She talks with a lot of one work expressions and does about 3 signs. Sometimes we catch her saying the word she usually signs, so she is a little stinker and can be sneaky also!

April 10, 2007 I have been trying on many occasions to update this website without success. So much has happene with Vivian. The most important is that she has the authorization for her tube to come out!!!! We are hopin this is done at the end of this month or in May. Her doctor is out on vacation for the month so we are waiting for her return. Vivian is doing welll. It is stil work to feed her. She eats all day but her weight is still only 21.4 pounds. We even compared what her brother takes in to her intake and she eats more in calories and volume! She is not skinny but proportioned. We are waiting for an appointment with the endocronologist to see about another round of testing to decide whether or not to give her growth hormone. I really do not want to give her hormone or make any great changes until that tube is out. She is having a great time. She really wants to go to school. She cries when she has to leave her brother at his preschool. We will let you know when the tube is to come out. We are also focusing on the foundation. It has really taken off. Our goal is to raise enough money to open a feeding clinic in the Inland Empire. There are so many cases of g-tube and feeding difficulties in Southern California we need to do something. We will be hosting our second annual yard sale. We have parents in need of transportation to treatment and assistance with supplies and feeding clinic fees. Let us know if you can donate anything!