Leah is now 8 years old. There have been many changes in the past few years. We moved to a new house, built an in-law apartment for her Meme who watches her after school, and inherited a new dog. (a black lab puppy). Leah also has 2 new cousins Rachel 1 ½ years & Brayden 1 year. Both were born happy & healthy. She has been very healthy and is growing taller now. For a long time her weight was a major issue and her height had stalled. We installed an above ground pool for her last year and the exercise has been great for her. Also we found a therapeutic horseback riding place for her to learn to ride and strengthen her muscles. She loves it. Leah still enjoys doing puzzles, listening to music, and watching movies. She’s a fairly easy going kid. She has a routine that we follow consistently that helps her to stay focused. She is in the second grade and is reading and learning nicely. She is a bit behind her pears both academically and socially but seems to be doing ok. She doesn’t like school very much. She has been “tested” regularly since birth for one reason or another that she seems to be annoyed with school work at this point. The teachers try to make it interesting and exciting for her though. Not much gets her super excited. That has been our struggle this year. We found that when Leah wanted to ”get out “ of doing her work she was making herself sick and I would go pick her up. Finally we decided not to pick her up and she seems to have stopped doing this. We are going to have her tested for attention issues related to anxiety and stress to see if we can help her with this. Right now she is classified as “Other Health Impaired” because she does not fall into any other category which I think is hard for some teachers to grasp. She acts and does everything an 8 year old should do so why is she in special ed? And what affect does her Health Issue have on her learning ability? And will she get sick if we discipline her? I have tried to convey that she does have learning issues and just needs extra help and extra time to process things but it seems without a more definitive label some teachers don’t “get it”. And we even got a letter from her Docs stating that she can be and should be held accountable for her actions like any other child and it won’t “get her sick”. I am hoping this will be our most difficult year and from here on she gets the help and support she needs. It is tough sometimes for us and especially for Leah. We have started to see the pressure she feels she’s under to do good and be good. Sometimes we just wish she could be a kid without all this other stuff. Feedings, Doctor appointments, Labs, special classes. So many restrictions. We just try to do whatever we can to assure she stays healthy and is happy.
We just had an annual check-up and now have a list of follow up appointments to do. She had an echo, she’ll have an EEG and MRI in June and will be going back to follow-up with Dr.Korsons at Tuffs Medical Center in Boston. Leah’s diet consists of her formula containing Duocal, XMTVI Maxamaid, Pediasure and Complete Amino Acid Mix. She takes Carnitine, Biotin, Dextromathorphan, CoEnzyeme Q10, Sodium Benzoate, Iron Supplement, B-1 & pyridoxine. She gets Zofran & Flagyl when needed and takes Zyrtec for allergy symptoms. She gets 3 feeding during the day with her Zervex, (the new Infinity) and an overnight. She has never been interested in eating but does enjoy chicken in a bisket crackers and buggles washed down with water. We have accepted that she may not eat and that is ok. We feel that if she is happy and healthy than that is all that matters. We love her the way she is and her happiness is the most important thing in the world to us. Thank you.