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  #1  
April 8th, 2009, 12:44 PM
Ditzzy's Avatar Stupid Lamb;)
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Do you have any big appointments coming up? New doctors or therapists?
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  #2  
April 8th, 2009, 02:24 PM
Jasons_Mommy's Avatar I love my little man!!
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We have a appt with the Developmental Specialist on April 17th
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  #3  
April 8th, 2009, 02:39 PM
docsmomma's Avatar Platinum Supermommy
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Melanie is having another hearing check on Thursday. Her last one showed possible hearing loss in one ear so this has me on edge.

Joey has scans coming up the first week of May. These are HUGE. If there is shrinkage in the mass then we stay this course, if there is growth we have to figure out how to get to TX to see the top specialist because I think his opinion is GOLD and if he thinks theres a way to avoid salvage then I want it, if we can't get there though then Joey will be admitted to the hospital and start salvage. And his usual labs weekly and chemo in 2 weeks.
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  #4  
April 8th, 2009, 05:32 PM
Ditzzy's Avatar Stupid Lamb;)
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I'll be thinking of you both! I really hope Jason's dev. ped. appt goes well!

Also praying the mass has shrunk!! And no hearing loss also!!

We have some very huge appts the first week of May too. Chest CT, head MRI, VSS, and then surgery on Wednesday the 6th. I won't be very active that week since she'll be admitted for part of it. I'm not thrilled that Ava will get some form of sedation 3 days in a row.
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  #5  
April 8th, 2009, 08:32 PM
quietsong's Avatar Just Another Slacker Mom
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Danny's got his monthly mapping session for his implants on the 17th, and I will be getting a call in the next few days to schedule an OT evalution as well so we can have those results back in time for his next IFSP in May.
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  #6  
April 9th, 2009, 08:44 AM
~~~Sara~~~'s Avatar Platinum Supermommy
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OH gosh yes, but aren't there always?

Friday we have a follow up with the urologist that did his hypospadias repair.

The we need to have a hearing test rescheduled.
Ophthalmologist check up
Genetics check up.

I am just thankful he's not "sick" at the moment. But the older he gets the more he hates long car rides and all our doctors are 2 hours away, we have very few specialists where I love even though there are about 400,000 people living here.
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  #7  
April 9th, 2009, 08:44 AM
~~~Sara~~~'s Avatar Platinum Supermommy
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OH gosh yes, but aren't there always?

Friday we have a follow up with the urologist that did his hypospadias repair.

The we need to have a hearing test rescheduled.
Ophthalmologist check up
Genetics check up.

I am just thankful he's not "sick" at the moment. But the older he gets the more he hates long car rides and all our doctors are 2 hours away, we have very few specialists where I love even though there are about 400,000 people living here.
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  #8  
April 9th, 2009, 09:16 AM
iamkc's Avatar Platinum Supermommy
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Yep, as always! Milo had a follow-up GI yesterday-went well, no real concerns there. (Well, those are some of the greatest concerns, but it seems as though GI has achieved its goal for now, so we just watch and wait.) Genetics yesterday morning. We thought we were just going in for a follow-up. Instead, we had to leave there to go for more Russell-Silver tests (he's already had them, but they insist that he hasn't, which means that they LOST THE RECORD!), which really isn't too bad. Just a blood draw to look at the chromosomes again. Milo also had to have a kidney u/s and hip x-ray. The hip x-ray is for possible dysplasia. The boy can do astonishing things with his right leg! The kidney u/s was just a check, since RSS kids have a higher incidence of a certain type of renal tumor. Milo also had a bone age scan, which he should have had already-especially before starting the GH!

Those were all ok. OH! And on Saturday, we were taught how to give GH, so Milo started GH therapy on Saturday!

The unfortunate thing is that Milo is on his second round of high-dose steroids, antibiotics, and new nebulizers in 3 weeks. He just finished, I should say. (Except the neb-he'll always have that.) The geneticist told us that CF and RSS are on the same arm of chromosome 7 (RSS can be in a few places, but that's the most common, I think). Given Milo's appearance, history, and current situation, she wants to do a sweat test. We can expect the sweat test to be positive, which is just silly-why not go ahead with the blood test??? So, now DH and I are on edge, sobbing, hoping for a quick test and hopefully a negative result! Wish us luck!

We have a follow-up surgical appointment, an ophthalmology appt, orthopedic, and a few others. Whatever it takes, right?
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  #9  
April 9th, 2009, 09:17 AM
iamkc's Avatar Platinum Supermommy
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Yep, as always! Milo had a follow-up GI yesterday-went well, no real concerns there. (Well, those are some of the greatest concerns, but it seems as though GI has achieved its goal for now, so we just watch and wait.) Genetics yesterday morning. We thought we were just going in for a follow-up. Instead, we had to leave there to go for more Russell-Silver tests (he's already had them, but they insist that he hasn't, which means that they LOST THE RECORD!), which really isn't too bad. Just a blood draw to look at the chromosomes again. Milo also had to have a kidney u/s and hip x-ray. The hip x-ray is for possible dysplasia. The boy can do astonishing things with his right leg! The kidney u/s was just a check, since RSS kids have a higher incidence of a certain type of renal tumor. Milo also had a bone age scan, which he should have had already-especially before starting the GH!

Those were all ok. OH! And on Saturday, we were taught how to give GH, so Milo started GH therapy on Saturday!

The unfortunate thing is that Milo is on his second round of high-dose steroids, antibiotics, and new nebulizers in 3 weeks. He just finished, I should say. (Except the neb-he'll always have that.) The geneticist told us that CF and RSS are on the same arm of chromosome 7 (RSS can be in a few places, but that's the most common, I think). Given Milo's appearance, history, and current situation, she wants to do a sweat test. We can expect the sweat test to be positive, which is just silly-why not go ahead with the blood test??? So, now DH and I are on edge, sobbing, hoping for a quick test and hopefully a negative result! Wish us luck!

We have a follow-up surgical appointment, an ophthalmology appt, orthopedic, and a few others. Whatever it takes, right?
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