×

CaringBridge Is Funded by People Like You

Make a donation to CaringBridge

Honor Adam, Austin, Phoebe,Andy & Rhy with a tax-deductible contribution to CaringBridge today.

Click here to make your donation.

Untitled

Adam is still acting up in school, to a point they want to try a after school detention with him.. So we will see if that works or not.. His IEP went ok, didnt change anything cuz they are going to be retesting over the summer then we will have a "true" IEP meeting..  this upcoming year is going to prove itself to be interesting.. Hopefully over the summer we can get him straightened out!  June 14th he goes to see the new Psych doc!! yaya finally!   Neuro thinks he is hyper and may need something to slow him down so he can rest cuz atm its a vicious cycle we cant seem to break!   So plan is to wait it out  till June and hope something is done.. With the heat coming.. Im really dreading his behavior!   This morning he was pretty down too which is already becoming more frequent again :(  This evening he was really "floppy" and couldnt hardly sit up on his own.. His elbow popped outta place and we had to put it back, which hasnt happened in some time.. but I think bring "floppy" and that go hand n hand.. I put him in his elbow brace for the night to help immobilize it and to help it feel better..   One day at a time.. moving forward.. He's still sick and actually got better for a few days and now back down with it ..  In the morning he is getting a abdominal ultrasound done.. we will see since he is still having tummy pain and trouble going potty.. I should be getting lab results back soon too .. GI ran some labs since he has been bruising easily for some reason.. hopefully its nothing to worry bout.. but with the mito.. who knows.. He is still trying to get over a cold.. he has a lingering cough that just wont go away completely.. 

Austin's biopsy came in, we seen Neuro Musclular nad she said it is Mitochondrial Disease myopathy.. Sooo now we have 2.. which means its more likely that it is genetic .. He has been coming home exhusated more than normal the last month or so, plus extra super cranky.. lots of pain  complaints.. so we are watching him and they upped / changed some meds... MRIs  look good , so did the EEG.. not sure whats causing the headaches he has..  I have to contact the specialist and start getting him in for baselines since his dx.. this should be fun:(  im gonna try to get them in with the same docs so we will see.. Austin is really enjoying being able to go out to Chakota Therapeutic Center and play with the horses!  End of May they start sessions and we will see when he will be able to start :)  He is sooo excited! April is the name of the horse he really likes and wants to ride.. He is also a Barn Buddy and helps feed and groom the horses.. He is absolutely loving it !  He also has 2 other favorites out there named Chance & Misty.. they are 2 mini's.. He has opened up so much when we are out there.. I am hoping over time we will see tht difference at home as well.. he is soo much calmer and laid back! OMG the miracles of these big beauties!  U can see the pics I took of them and of the kids on my facebook :)

Phoebe is still battling a cold.. for almost 2 months now.. even with being on a higher level antibiotic :( They switched her inhalers to advair and dropped the flovent.. hoping that it will help more and she wont need so much albuteral..  She has been so whiney and cries at every little thing... Its driving me crzy.. not sure what to do with her.. I dunno if its cuz she is feeling crappy and just extra sensitive or if its her being herself.. Im hoping for the first one!  I cant take whining!  She is still taking her treatments every week, and doing fairly well with it.. She only fusses a little now.. Next week she goes for Pre-K screening at the elementary school.. so we will hopefully get her in this year at the school.. I also called genetics today and got her an appointment and it will be in July.. I am going to have them test her as well for the Mito since ther immune thing can be part of Mito which would explain more why its not a "typical" immune issue... So now we wait...

Andy is doing good in school still! I am sooo proud of him!  NO restraints this year so far!!! He is also signed up for Drivers Ed starting next school year!!!! OMG! Ok I do feel old now! I dunno if Im ready for this leap! LoL  He has matured a lot the last year tho.. So who knows, we will see.. :)  Andy is also volunteering at Chakota and so far is enjoying it.. So we will see how things go over the summer when its actually more work than play:D  

Elliott is doing good, settling in great.. He has put in a few job apps, but no bites yet.. He is almost done with smoking.. it has been a very up and down roller coaster ride, but he is doing it! Yay!  He has found himself a girlfriend, Andrea.. She goes to our church and is a real sweety..  They are so cute together.. :)  So I think he has settled pretty good here.. He is still getting used to ppl being nice around here and not out to get you.. !  Told him thats why I LOVE it out here ! :)  He is looking into going to SWIC for fire science .. Im hoping to get him into it for the fall semester.. We will see :)

Jeff is still looking for  a job without much luck.. not sure why but still not found one.. Hoping soon.. he things he had some good hits this last week or so .. say a prayer he gets one soon! Jeff decided to volunteer at Chakota as well...  I am doing ok, I have lost 30lbs since Jan 1st!! I am also volunteering out at Chakota and Im loving it!  I love working with the horses :)  Nothing like a 1500 lbs dog.. lmao.. :D They have a new horse Ruby , that I have fallen in love with! she is so pretty, red headed and stubborn! :D just like me ! :P thats y we get along so well..hehe :)   She is smart tho and is going to make one hell of a therapy horse!  She is well on her way :)  I cant wait for the day she is "offical".. I hope Im out there that day :)    Now if we can just get this damn rain to stop so we can work out there easier and not be ankle deep in mud.. not to mention soon Im going to need a boat to leave the house! My poor yard is so flooded...   All in all tho things are going ok and we just take it day at a time.. Guess ya cant ask for more than that..   With the new dx of Austin, I have taken it pretty hard.. not to mention personal.. but I am dealing and doing what I gotta do.. just frustrated and yes a bit angry.. but nothing can be done.. Just move on and take care of them and do what we can :)    

God Bless!

Sign Up and Stay in Touch

Be one of the first to know when there’s an update to Adam, Austin, Phoebe,Andy & Rhy’s website.

Get Adam, Austin, Phoebe,Andy & Rhy’s Journal Updates

Comments

0 Replies