Not sure where the time went but wow.. Spring came n went and summer is here and almost over... Hard to believe school starts in 2 weeks.. (not that Im counting down or anything) Where to start.. I guess with Adam..
Adam has had a roller coaster of a spring/summer. In May he had his tonsils removed, ear tubes removed and ears patched, and his nose cauterized. Since then he has refused to eat a decent diet and started a rapid weight loss.. We have been in contact with GI and Dietary.. We tried everything from cooking his own meal made with extra "calories" to adding in extra pediasures that he wouldnt drink.. So on the 20th of July they placed a NG Tube and we are giving 1080 calories at night thru that (3 cans of 1.5 pediasure) It has only been 10 days but he has managed to lose another pound.. If he dont start eating more calories on his own , then they are going to place a G tube in .. we have till the 20th (ish) of Aug for him to accomplish that. We have been fighting it since May. Him not eating enough has triggered his Mito to start spiraling down and he is having more down days, less endurance and CRANKY!! (from being over tired) Not looking forward to school on that one for sure. So now we wait, continue to fight him to eat more calories on his own and go from there.. btw this is very frustrating since we have tried everything.... ugh Adam has also found a new favorite thing to do... 500 piece puzzles!! (by himself!) He is quiet for hours and loves it.. Sooo if anyone wants to send him something.. send puzzles (at least 250 pc up to 500 pc) :) Also hard to believe that in a few weeks Adam will be turning 7!!! Another year we have had that Mito didnt take away! August 16th Adam will be 7!! Happy Birthday Bubba!!! :)
Austin is doing pretty good.. Over the summer he has received OT / PT / ST and is doing good.. Still lower tone and endurance is lower but he hasnt seemed to have lost anymore... therapy has at least maintained where he was. School PT / OT made comments that he had actually lost ground last year so outside therapy was something they really wanted for him over the summer.. he has done great with it and his behaviors have improved ALOT with Tim and I.. It is a nice break from what we had at beginning of summer. Austin had his Make A Wish trip to Kentucky Horse Park. They sent us down in a RV so we camped out at the RV park for the week, went to KY Horse Park, Ashford Stud Farm, Clairborne Farm (where Secretariat was retired, part of the film was made and he was buried). Austin was ecstatic to be there and get to see his FAVORITE horse of all times, place of residence. We also got to go to Keenland Race Park on opening day and see the races. Austin got to go behind the scenes and in the paddocks, trackside and in one of the Member boxes to eat and watch the races via T V... He was super happy and excited bout that as well! Lets just say that on his Make A Wish Trip there was LOTS of Horsing around! :) It was so worth all the smiles and happy moments he had.
Phoebe is doing pretty good.. Her last labs looked great, so Immunology wants to do a trial run of NO subQ treatments until the beginning of Oct!! YaY! This would be great considering she has really been fighting us on it and REALLY not wanting to do it... Praying it all works out and she dont have to have it anymore! He behavior on the other hand has been a lot of Up n Down's. Not sure what is going on but we are working thru it and hoping that when school starts she will settle down a bit more... Kindergarten this year.. hard to believe! She has grown so much and gotten so tall ! (sad thing is she is just a few inches shorter than Adam and weighs the same!)
Andy is doing great.. in summer school this year and spending the summer with Mama.. He is liking it for the most part.. Lots of work, which is good for him, and learning alot of new things. Glad she was able to spend the time with him and teach him all bout gardening :) He is growing up so fast! hard to believe that in a few days he will be 17!!!! Where did the time go!?! August 2nd he will be 17... sooo HAPPY BIRTHDAY to my "baby boy" Andy! He has also started to work at the school and get his first real paychecks. He is so excited bout that :) This coming school year as long as his behavior continues to be good he will get to work outside the school at Pasta Fare or Petals Remembered in Fairview..
Tim and I married on June 6th, 2012. It was at the courthouse and then we spent the day at Carlyle Lake n Hazlet Park. It was a very nice, peaceful day! Something we both needed so badly! We didnt tell anyone cept Kay n Tim's Mom Julia.. We didnt want the drama or the questions or any one bugging us.. this way it was just us, quiet and the way we wanted it :) On my facebook there are lots of pics so enjoy! :) Pics of Austin's Make A Wish are there as well by day..
Also hard to believe that Baby Rhyan is only a few weeks away!! Ok 6 till due date but still, hard to believe.. So far he is doing great and growing big! (Literally big) he is measuring about 2 1/2 - 3 weeks bigger than he is and at 31 weeks they are saying he was already 5lbs 1oz!!! (with 9 weeks left to grow!! ) Tim is getting so excited and it is amazing to watch him.. he is still doing great with the kids and they are with him as well.. Him and Adam seem to butt heads but I think its cuz they are both so much alike ..lol Gotta love em !! I know its been awhile and I am hoping to get into a habit of updating specially with the medical things going on.. God Bless!!
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