We have got to stop going to the hospital to see Dr. Kirton! Ok, maybe he's not the bad guy, but we are beginning to see a trend here. Two outpatient visits (out of two) and Drew's back in the hospital each time!
Drew has had a busy week of appointments. Monday he saw a chiropractor for an assessment and to see if we could get some input on good methods to use to get him using his left side again. Our chiropractor consulted with another one on staff and they are getting in touch with some clinics in the States to see if they have any good suggestions so we should hear back next week.
Tuesday he saw the infant services team (therapists) and we got our homework for the week. He was less than thrilled to be at the hospital, and was unwilling to share one of those adorable smiles with his therapist for the entire hour (if anyone doubts his strong will that and the way he takes meds would make me beg to differ!). We did get some good tips though and the speech therapist was very pleased with his vocalizations and mouth movements. A+ Drew!
Wednesday we were off to see Dr. Kirton, his neurologist and primary specialist. Drew has lost a little more weight and is down to 8.3 Kg (someone should tell him that baby fat is in!). His seizures are also stronger - we called the hospital in the middle of the night as he was having a fairly strong, more generalized seizure that lasted over an hour and a half. Trying to think coherently to make decisions in the middle of the night is always interesting, and we may have undone any work done to teach Drew the difference between night and day! We were turning lights on to observe him, moving him around, talking, and pretty much everything they tell you not to do if you are trying to teach a young one the difference between night and day. He was loving it! Anyway, with input from the dr. we decided to wait it out and come in this morning. Dr Kirton was not surprised that Drew decided to change things up again, but he is now thinking that one of the two antiseizure meds he's on is probably not working, and it may even be causing some of the strange symptoms Drew is having. He is also pretty sure the steroid he was on in the hopes that Drew might have an auto-immune disorder called Hashimoto's Encephalopathy is not working, and therefore that this isn't our answer. We are going to wean off of both of these drugs in the next week (Drew will love this - the fewer the better!).
We are back to the hospital later this afternoon for the following reasons:
1) Dr. wants to observe the seizure activity again.
2) Dr. wants to boost his intake to prepare Drew for his surgery and anesthesia on Friday (if he has a mitochondrial disease we don't want to compromise his energy reserves).
3) It will be easier to get in for another EEG and a hearing test while in hospital.
4) Drew's blood is in such high demand that they want to keep him around so they can get some more.
5) They think it would be better to keep a closer eye on him following the surgery, as minor as it is. (On that note, they have decided they don't need to do the lumbar puncture right now but will wait another month or so for that to make sure the effects of the IVIG have worn off. He will just be having a liver biopsy.)
6) The nurses miss Drew.
So... off we go again. We are going to enjoy the day at home before they reel us back in again as much as possible!
Please pray for his left side to show some improvement in strength.
Please pray that Peyton will take this news ok.
Thank you for all your prayers!