Monday and Tuesday was spent at Children's Hospital making our "rounds" of the various specialties that follow Mighty Max. I believe we accomplished ten appointments in just two days...yep! We had a few glitches at the last minute, but we pushed and pushed until we got all of our visits accomplished.
Here are the highlights:
HEARING
We did another behavioral hearing test to recheck the results from a few months ago. Unfortunately it did confirm the additional hearing loss, but Max also was getting a bit bored. He totally understands this particular behavioral test but isn't developmentally ready for the next level. So he is in between...and *perhaps* that is the issue. The audiologist is requesting a BAER be performed in the coming months. This is a hearing test done with the individual under general anesthesia and can often provide accurate results.
Additionally, he will get ear tubes during his next surgery. This should help relieve the fluid and recurrent ear infections.
VISION
They did a wide range of testing on Maxwell for his vision. They were extremely impressed with how well he uses his vision and performs on the tests. You should have seen how calmly Max put his chin and forehead up against the bar...quite impressive for a four year old! There does continue to be a vision loss that needs to be corrected with glasses. But the doctor (and I) are putting this issue on hold for now since he compensates so well.
BALANCE
Yep, no surprise...Max has poor balance. Actually the doctor did a quick test (rapid eye response - basically a head is vigorously shaked and the eye movement is observed) and said he doesn't think Max has any vestibular system at all. Hmmm...well, one more reason to be truly amazed with Max's walking!
We will be doing a more thorough test in our next visit.
KIDNEYS
This is one organ that we haven't been following closely because there weren't any issues since he was a baby. However, the ultrasound showed some irregularities that we need to follow up on with blood and urine tests.
TEETH
The dentist was quite happy with Max's teeth...except for the incessant grinding. He has actually chipped several teeth and flattened out many others. There isn't too much we can to stop him, but we will continue to work with his therapists on oral stimulation.
HORMONES
This continues to be a challenge for Max. He is low on one particular growth hormone, and his size is also a concern. We have blood draws, etc. to schedule for this week.
It was an interesting visit because we had not worked before with this endocrinologist. It was a bit uncomfortable answering questions about Max's father, siblings, etc. I don't really know anything about his half-siblings and didn't want to explain about all the different mothers, etc. I just quickly tried to move on to the next subject. :)
SURGERY
So the surgery will happen in the next few months and will include tonsils and adenoids, ear reconstruction, ear tubes, and choanal atresia review. For now we are putting the MRIs and CAT scans of his olfactory bulbs, brain structure and inner ear on hold. There just isn't enough time to do it all together.
Here are the highlights:
HEARING
We did another behavioral hearing test to recheck the results from a few months ago. Unfortunately it did confirm the additional hearing loss, but Max also was getting a bit bored. He totally understands this particular behavioral test but isn't developmentally ready for the next level. So he is in between...and *perhaps* that is the issue. The audiologist is requesting a BAER be performed in the coming months. This is a hearing test done with the individual under general anesthesia and can often provide accurate results.
Additionally, he will get ear tubes during his next surgery. This should help relieve the fluid and recurrent ear infections.
VISION
They did a wide range of testing on Maxwell for his vision. They were extremely impressed with how well he uses his vision and performs on the tests. You should have seen how calmly Max put his chin and forehead up against the bar...quite impressive for a four year old! There does continue to be a vision loss that needs to be corrected with glasses. But the doctor (and I) are putting this issue on hold for now since he compensates so well.
BALANCE
Yep, no surprise...Max has poor balance. Actually the doctor did a quick test (rapid eye response - basically a head is vigorously shaked and the eye movement is observed) and said he doesn't think Max has any vestibular system at all. Hmmm...well, one more reason to be truly amazed with Max's walking!
We will be doing a more thorough test in our next visit.
KIDNEYS
This is one organ that we haven't been following closely because there weren't any issues since he was a baby. However, the ultrasound showed some irregularities that we need to follow up on with blood and urine tests.
TEETH
The dentist was quite happy with Max's teeth...except for the incessant grinding. He has actually chipped several teeth and flattened out many others. There isn't too much we can to stop him, but we will continue to work with his therapists on oral stimulation.
HORMONES
This continues to be a challenge for Max. He is low on one particular growth hormone, and his size is also a concern. We have blood draws, etc. to schedule for this week.
It was an interesting visit because we had not worked before with this endocrinologist. It was a bit uncomfortable answering questions about Max's father, siblings, etc. I don't really know anything about his half-siblings and didn't want to explain about all the different mothers, etc. I just quickly tried to move on to the next subject. :)
SURGERY
So the surgery will happen in the next few months and will include tonsils and adenoids, ear reconstruction, ear tubes, and choanal atresia review. For now we are putting the MRIs and CAT scans of his olfactory bulbs, brain structure and inner ear on hold. There just isn't enough time to do it all together.
*As soon as we got home, we ran over to our friend's house for his fun birthday party. Max's favorite part was hanging out with his cousins and getting a little wild! This was one of the few times they were actually sitting still...so cute! And shortly after this picture was taken, they started running around again and Max broke my camera. Oh and tonight he tossed the other camera into the toilet. So apparently photos are going to be few and far between for some time! :) Crazy kid!
3 comments:
Wow. As usual I learn so much about Max from your posts. Looking at the photos of Max reading and walking.... and then on the beach... and then reading the update of appts at Children's. I forget when I see all that you and Max do, how much there is medically still being tenderly cared for. Amazing family you are. Take care and hope to see you both again soon.
WOW you guys have been very busy! Good luck with all the surgeries, I am not sure what they are going to do to reconstruct Max's ear but Eva's did not work, her ear fell back down and I am about to lose it. I am going to see a new ENT and Audiologist that was at the conference since I can not get a good idea of what her hearing really is.
Looks like you guys had fun at the party and the buddy walk.
Hugs,
crystal and Eva
Wow, I am exhausted catching up on all of that. I'm sure it was a very long and overwhelming couple of days for you both. What a trooper Max is, and what an amazing mom you are. It is definitely not easy keeping things organized, and you seem to do it so well. Max is walking, thriving, and doing so incredibly well because of YOU! You are truly amazing! We will be thinking of you guys as you get ready for the surgeries. Glad to see that Max was able to unwind with the boys when he got home. He is such a cutie!
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