Sam's mom

[Guest guest]

Hi , Sorry to hear that Sam is still not doing well. You asked a few questions about losing weight and paleness. Tia is 9 and in 4th grade. During the summer, she was up to about 62 pounds. She has always been small, but healthy looking. Her lowest weight before surgery was 54. She looked awful, and literally didn't have any more extra weight to lose. Her stomach was caved in, her rib cage stuck out it was hard to look at her without crying. She has gained back 5 pounds. She looks much better. Still very small but looks healthy weight wise. One thing they gave us at the hospital was a SCANDI SHAKE. We came home with some packets of it. It is "calorie-rich for weight gain". You put the mix in a blender and add milk, yogurt, icecream whatever Sam likes, blend and drink. Maybe you can see if you can get some of this. Tia did not like Ensure, or any of those calorie drinks. Those drinks are expensive

and when she wouldn't drink them I'd get frusterated. But, she did like the scandi shake. She would have to do little sips take a break, little sips take a break to keep it down. But, she got to the point where she couldn't even keep water down. Hopefully Sam isn't at that point. PALENESS... Tia had this and still does. She also had the dark, sunken circles under her eyes. We just got her iron tested and she is fine. We are giving her a chewable mulitvitamin with iron to make sure nothing changes (these sometimes can upset her stomach). Our pediatrician explained she looks pale due to her weight loss. We feel better knowing that her blood work is ok and hope with time and sunshine her complexion will return to normal. I am Mexican and her dad is German so she usually has a beautiful complextion, and boy does she tan in the summer time!! SCHOOL.. This was a huge conflict for me. I wanted her to be "normal" and be a kid. I

didn't want her to miss out on fun stuff. If I kept her home she was fine, she just had issues when she ate. I teach for Head Start so I had the summer off and just went back in September. This is when all of Tia's trouble started. The first day of my preschool the kids had a substitute because Tia was at the hospital for her first set of tests. As Tia got worse and wasn't able to eat, school got really hard. She was so exhausted and sullen all the time. Her teacher said she actually fell asleep in class one day. That is when I got more tests moved up. Her teacher is great and really worked with us to make special accomodations. Tia was allowed to have snacks (in the beginning) during the day rather than just eat lunch and they started a buddy system to go to the restroom with her when needed. I didn't want her alone because I was afraid she may pass out. We also started doing half days because she couldn't handle the whole day. She was missing so many

days of school that of course the kids started asking questions. The teacher explained that she was having testing and that she was having medical problems. I get choked up just typing all of this. I guess I'm just trying to say .... stay in contact with the teacher and have him/her explain a little to the kids so they can support Sam. Right now the flu and sickness season is much worse than in the Fall. I would have to say that I would want to continue to have Tia be as normal as possible. Tia started to get depressed because "she felt like a freak" is what she said. So just keeping her home, away from everyone would have made her depression worse. If keeping Sam home is an option for you then I'd do it. But also would try to see what things he could go to school to do. If there is a certain time they are practicing the play.. can everyone wash their hands and use Lysol wipes to clean the room before he enters so he can join the class

for that time period? When we were in the hospital and finally knew that Tia has Achalasia and surgery was the next step I wrote a letter to Tia's classmates. The teacher was telling me that many questions were being asked and she didn't know what I wanted to be said. I knew that I only wanted facts shared. Someone had asked my brother if Tia had cancer because "they had heard a rumor". The teacher printed out the letter and each student took it home. I gave my email address as I was checking my email while I was in the hospital. I got many letters from other parents thanking me for writing. Yes, there children were going home saying Tia was sick and in the hospital. Some parents wanted to ask the teacher, "why"? but didn't feel it was their place to do so. When we returned home, there was a HUGE basket of presents from Tia's classmates. It was overwhelming. It made a world of difference in Tia. She was afraid to go back to school

because she thought she would be made fun of, she just felt so "abnormal". When she read letters from BOYS and NATHAN SENT HER A DOLLAR, TRAVIS SENT HER NAIL POLISH.... she couldn't believe it. Those boys actually cared???? It made her return to school so much easier. I could send you a copy of the letter I sent to her classmates if that would help. Ok, I know this is getting long. Please know I'm giving you a big hug right now. You will get through this. You have to take care of yourself too. When the surgery was over and we returned home things got rough for me. I was just trying to get through each day, be positive and supportive for Tia and be strong. Tia couldn't return to school for awhile so I stayed home with her. This is when everything hit me. She was eating (soft diet) and feeling better. Now I felt like ^*( & *( & @. I was so overwhelmed with getting back in a normal routine and

was thinking, "oh my gosh what just happened". Things are much better now. I still have my moments as does Tia. Get support and don't take all of this on yourself. I pray for you. Please take care and let me know if there is anything I can do to help. Bourm

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