Ok so...its been a while since I updated and Im a little a loss as to even what exactly I should say. Lydon is being Lydon...complicated but then again, I guess that's just normal. We received a call from the hypertension clinic last week. The nurse told me that she had gotten all of Lydons results in and they would like to move my appointment up a week. So we went in on Thursday. Dr. S came into the room and told me that he was a little dumbfounded. He said he had a whole spill of things ready to discuss with me such as what blood pressure medications were appropriate and which ones had which side effects. His plan was to discuss this and send Lydon home on bp meds. But...Lydon being himself threw us a curveball and gave us a bp that was the lowest we have ever seen it. It was still a little on the high side but nothing like what we have been seeing. So, Dr. S said that he was a little uneasy started him on a new medicine if his blood pressure is going to fluctuate or start to even out. Guess we'll see... We are starting to lean a little more towards the fluctuating issue because we have started seeing him exhibit HUGE mood swings for no apparent reason whatsoever! The other thing Dr. S is worried about is that the renal scan showed that his kidneys were smaller than they should be. He is wondering if there is a narrowing within his renal vessels that is the underlying cause of the high bp. He said this could likely be caused by his small kidneys. We are struggling with our therapy appointments. Our Physical therapist doesnt feel like she can proceed with any PT plans until we are sure about what is going on with his bp. We are having lots of trouble with Speech. It just seems like we arent getting anywhere speech wise. He says a word one time but then doesnt repeat it or use it again. Today he did terrible during therapy. He did nothing but cry, scream and grab his blankie to go back to bed after only being awake for about 20 minutes. She (the speech therpist) talked to me about something called Apraxia and possibly developing a more detailed motor developement plan(whatever that means). He is still running his low grade fevers like he has been for weeks now. We have an appointment with Immunology on Wednesday. Genetics on Thursday. Our sleep study is scheduled tonight. I will update later in the week with more info.
On a more urgent note, please keep the family of Cooper Knight in your prayers. His lost his courageous battle with Mitochondrial disease and his family are saying their final goodbyes today and tomorrow. Even though I didnt know this family personally my heart breaks for them like family. Godspeed Little Man.