Here's an update until Mike can post some new pictures of our little soldier boy...
We went to see our new GI specialist on Thursday ... Dr. Baron said all biopsies looked fine.
The retching remains a mystery, but it does have something to do with how his tummy adjusts to volume. Doc put him on Baclofen, he gets 1cc three times a day...
and so far....
NO MORE RETCHING! Well.. he had one tiny retch which was nothing compared to the usual turning purple with eyes bugging out.
Since this drug is a muscle relaxer... we have noticed him being a bit wobbly when he walks ... we'll keep an eye on this and report to the doctor next week.... loses his balance very easy now.
He seems a little on the "testier" side :-/ ... but we'll see ...
We're thrilled that he's not retching ... but hoping the side effects won't last.
We GOSH DARN wish our previous GI specialist would have listened to us 8 months ago when we first suggested Baclofen (after friends of ours started their cardiac child on the same meds for a retching problem)!!!!!
OHHH and yes .....
Matthew has a brand new specialist to add to his huge doctor list...oh boy ...
you all must know how much we love spending our days in the doctor offices.
That will be a pediatric dermatologist .... Dr. Doug Thomas....
Matthew's had a weird rash on his arms and legs only..... for over a year now ... we've tried three different topical meds (one being a $265. can of foam) .... nothing seems to be helping.
We couldn't get in for five weeks .... so we'll know what's up with his skin at the very end of March.
We went to see our new GI specialist on Thursday ... Dr. Baron said all biopsies looked fine.
The retching remains a mystery, but it does have something to do with how his tummy adjusts to volume. Doc put him on Baclofen, he gets 1cc three times a day...
and so far....
NO MORE RETCHING! Well.. he had one tiny retch which was nothing compared to the usual turning purple with eyes bugging out.
Since this drug is a muscle relaxer... we have noticed him being a bit wobbly when he walks ... we'll keep an eye on this and report to the doctor next week.... loses his balance very easy now.
He seems a little on the "testier" side :-/ ... but we'll see ...
We're thrilled that he's not retching ... but hoping the side effects won't last.
We GOSH DARN wish our previous GI specialist would have listened to us 8 months ago when we first suggested Baclofen (after friends of ours started their cardiac child on the same meds for a retching problem)!!!!!
OHHH and yes .....
Matthew has a brand new specialist to add to his huge doctor list...oh boy ...
you all must know how much we love spending our days in the doctor offices.
That will be a pediatric dermatologist .... Dr. Doug Thomas....
Matthew's had a weird rash on his arms and legs only..... for over a year now ... we've tried three different topical meds (one being a $265. can of foam) .... nothing seems to be helping.
We couldn't get in for five weeks .... so we'll know what's up with his skin at the very end of March.
9 comments:
I know all the doctor's appointments are a drag, but just look at the progress that has been made. I noticed on Friday that Matthew appeared to fall down easily. I have great confidence in Dr. Baron and I am sure he will adjust his medication accordingly.
I noticed yesterday that Matthew loves to roll over and over on the carpet. Everytime I see him (which is often) he does something new that cracks me up. He is definitely a "purpose driven" little boy. Nothing is done accidently. He has expectation in the performance of whatever he is playing with as well..... like our non-hand held telephone. chuckle chuckle.
Last night he rearrange the knick-knacks on the living room tables. I haven't place "no-no's" on these objects so he will enjoy going to grandma's house. All the no-no's are up high and out of reach. chuckle chuckle. He hasn't discovered the piano yet......... Right now he just loves to walk around the house, flush the toilet and conquer the steps going down into the living room. Life is good!
What a fun little guy! Love you sweet baby! grandma wright
Well...
he did just have a nasty retch this morning after his meds (Monday) ...
hopefully it won't continue....
maybe his meds upset his tummy...
I hope the retching he had this morning was a one time thinggy. I'm glad to hear he is doing better with that and hope that the side effects don't last long.
(((((hugs)))) coming from AZ!
Hi Terri! This is Jeni. I got it to work. See ya later. Jeni :0
Yay Jeni!!
Thank goodness!
It'll be fun to see you here...
Jeni was one of Matthew's primary nurses before he had his surgery here in LV!
Hoping that retching didn't happen again yesterday and the med is doing it's wonder to make this stop! A dermatologist - yes Evan is going to have that added as well b/c of Eczema, hmmm.... Thanks for your thoughts - I know you understand the hurt a mother feels when their child has to be put through yet another procedure, although this one is small. You said they only give his IV once he is asleep, what do they give him to make him go to sleep if you could share? They give Evan a little squirt up the nose of something and it makes him a bit loopy but still very awake and upset through the IV procedure. Thanks!
They put a mask over his face and we were able to stay there until he was asleep...
they were able to do this for two catscans and his endoscopy.
IT WAS GREAT!
I hope he's better now!
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