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Adam, Austin, Phoebe,Andy & Rhy’s Story

Adam wasn't quite 3 and diagnosed with Mitochondrial Myopathy Complexes I & IV on June 4th 2008.  Austin wasn't quite 7 and he was diagnosed with Mitochondrial Myopathy, April 26th 2011. Keep Updated with them and our other children as we go thru this journey. We are asking if you can help to offset medical costs that are not covered by Ins. Please donate to Adam thru PayPal! His paypal account is hopefay5@gmail.com  . I will update what we need at bottom of our story! God Bless!



Adam is a little brother to Andy (15) and Austin (6) and a big brother to Phoebe (4).. Andy and Austin are on the autism spectrum.. But, Adam was definitely my "Angel" baby... He was different from the start and we knew it. We couldnt prove it, but he was.. We noticed early on that he could not eat like my other babies and the left side of his face was droopy. They told us it was a intrauterine stroke and that he was doing well with therapies and would be fine. For 2 years, this is what we were thinking.. Then around his 2nd bday we noticed he started to seem "weaker" and "sluggish". We started going to Doctors at childrens and they couldnt find anything wrong. I KNEW there was something going on somewhere.. From his 2nd bday to 2 1/2.. he developed a heart murmur and the left side of his heart was slightly enlarged. Nothing the cardiologist was concerned about.. yet.. My gut kept telling me that there was just something NOT right with Adam.. Our peditrician agreed and we pressed on by moving over to Cardinal Glennon's. They did further testing that led to doing a muscle biopsy. We have waited for a year of doctors telling us there was nothing wrong and knowing they were wrong to our diagnosis we are at as of today.. Mitochondrial Myopathy Complexes I & IV.. So our days of "weakness", and pushing things around the house for support, and unexplained exhaustion is all explained now. . . I will keep you posted with information and the things we are going to do for treatment... At this moment in time, we dont know much and we are just waiting to hear back from doctors to see what we are going to do.. Thanks for coming here and thanks for visiting Adams Site! :) God Bless!

 Austin as of  June 2010 was also diagnosed with Mitochondrial Disease.  At this point they are opting out of doing the biopsy due to the fact treatment will not be affected either way.. So Vitamin cocktail for him as well..  We have noticed a rapid decline in his health over the summer. Slurring speech, studdering, increased leg/back pain, increased fatigue and crankiness!   Dr. S is pretty sure that is what Austin has symptimatically and family history..  So we will start him on the journey along with Adam to having all the docs and checking up on him.  Neuro Muscular in Jan 2011.. I will update on him as well as we go thru his journey.. Thanks for the prayers!

Phoebe has also officially been diagnosed with Selective Antibody Immuno Defiencey and has been receiving IVIg treatments at the hospital for a year now.. We just changed over to SubQ weekly treatments at home begining of Dec 2010.  She is doing well with it and its much easier for all of us.. She is on this for a min of 2 years and then depending on how she does, it maybe longer or lifelong.. just depends on her system and if it can start making the antibodies.. We will be having her tested for Mito too.

PS.. IF you want to do something for Adam, Austin & Phoebe, keep them in your prayers and thoughts..and sending them mail, they love it.. to:  308 S. 9th St., New Baden, IL 62265 they would love to hear from you:)

 

He loves getting mail and messages on his guestbook!

We have also set up a PayPal account to help offset some medical expenses that are not covered.  If you would like to help them please donate to thier  paypal account at www.paypal.com and his addy is adamgrover@charter.net ! Thanks and God Bless

 

Things we are needing as of Jan 2011..  Monthly we need to buy thier vitamins that are in the Mito cocktail, these are not covered under insurance and are not cheap!  Each month it costs roughly $200-250 for their vitamins, specially now that we have to give it to Adam & Austin.  We need a big van(like the little bus) so we can all go somewhere together and have the wheelchair lift so there is enough room for equipment and wheelchair.. We dont know for sure how much but alot.. Please help us achieve this so we can get a vehicle we can use as a family! A medical stroller  $1900 for the one we need for Austin, he has gotten to the point he can not tolerate a lot of distance walking now..  TY & God Bless

Latest Journal Update

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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!!