A brief summary of our crazy life is.... our 7 (almost 8 now) year old son, Trevor, who has autism, has been struggling for several months. We are in the process of making changes at home and school to help get things back under control. For so long he was doing so well and it seemed like we had a son 'with a few autistic traits'. Now it seems like we have a son with autism who acts normal sometimes. It has been a very heart wrenching thing to go through for me. I have come up with some ideas, his resource teacher has as well and we are implementing them right now. He is also starting private therapy to help as well. It's been a long few months with him but I do feel like we can get things under control with some effort.
Our youngest Josh (over 2 1/2 now) has also had a long and rough winter. He has battled H1N1 and RSV in October and had constant ear infections since then. He had tubes placed as well as tonsils and adenoids out on Feb. 11th. He is doing well now and we hope to keep his health good. He has been kept in seclusion since october and we hope to get back out in the world soon. He has been put on 24/7 feeds because of severe reflux and vomiting. He is gaining weight for the most part and doing remarkable on the change in feedings. It makes it a little tricky to have an active 2 1/2 year old on a feeding pump all the time, but he has made the transition with no problems. He is such an amazing little boy and such a trooper.
We have gotten pretty much all of Josh's diagnosis down now and it is quite the list. Microcephaly, Brachycephaly, Dyspraxia, Speech Apraxia, Failure to Thrive (resulting in G-tube placement), Coronal Synostosis, Motor Feeding Delay, Sensory Processing Disorder, and a Seizure Disorder. Phew! He has come a long way already and is doing some good things.
If any of you have any experience with any of those disorders... feel free to give advice. It's been a long 2 years getting to this point and I am always looking for help, guidance and advice.
I hope all is well with all of you!!!
4 comments:
Phew! I was getting tired just reading it. You are such an amazing mother and person I know you can pull through this. If you need anything or even just want to get together with someone, just give me a call. I miss you and your sons!
Oh, my. Yes, that is a lot to handle but what adorable guys you have.
We do not know what our son's diagnosis is but he does have a seizure disorder. It is L.A.M.E.!
Good luck with that one. I need advice with that myself. Thank you for the post and everyone for this awesome blog!
Love, bree
Melissa you are such an amazing mom and I admire your positive attitude and outlook even in the face of such big 'trials'.
I understand the whole FTT diagnosis with reflux and vomitting, etc. and G-tube fun things... Apraxia/Dyspraxia is also a familiar thing. So you're definitely not alone on that one.
We travelled that road a few years back and currently, the majority of my work involves mostly apraxia and feeding therapy in Provo.
How's the reflux and vomitting now?
Geez, what cute kids.
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