everything went well yesterday at the eye doc.
he actually did really well for a one year old as far as sitting still while someone shines a bright light into your eyes... the dr did see some round, brown spots on his iris that she was a little concerned about so he also got his eyes dilated. poor kid, ive never even had that done. but he was a total trooper.
once dilated, she could tell that the spots werent raised so thats good, but she also told me that the lisch nodules could show up anytime between the ages of 1-6, so i guess theres still time that they could be what we dont want to see. but luckily, once we get all the genetic testing done in january, we will know whether or not we really have to worry and watch the spots, or if theyre just more little weirdo spots on my cutie toots.
so thats all for now... monday is the big day! hopefully we get a few more answers!
Friday, September 28, 2012
Thursday, September 27, 2012
eye am normy.
ok so we went on a sweet little vacay that for two weeks so ive totally been mia.
but we're back!
the dermatologist went pretty well, much better than our appt with the first, she didnt think his giant birthmark was Beckers Nevus which is what the first dermatologist decided that it was after looking at it for all of two seconds.
the new pediatric derm thinks that it is probably just a birthmark and nothing more, especially since i have 8+ birthmarks myself and those things are genetic. but just as a precaution we do have an appt with the eye dr to rule out the possibility that it could be Neurofibromatosis. i guess theres a way to check something in his eyes that might rule it out. at least until january when we see the genetic specialist, then im sure he will be more thoroughly checked out.
in other news. finny hates a long car ride. our drive to florida was not the most pleasant experience for anyone, a screaming baby tends to make everyone a little tense. he did love the beach and played like it was his job. it was awesome.
ill come back and edit later if anything comes of the eye dr, although im really expecting it to be totally normy.
but we're back!
the dermatologist went pretty well, much better than our appt with the first, she didnt think his giant birthmark was Beckers Nevus which is what the first dermatologist decided that it was after looking at it for all of two seconds.
the new pediatric derm thinks that it is probably just a birthmark and nothing more, especially since i have 8+ birthmarks myself and those things are genetic. but just as a precaution we do have an appt with the eye dr to rule out the possibility that it could be Neurofibromatosis. i guess theres a way to check something in his eyes that might rule it out. at least until january when we see the genetic specialist, then im sure he will be more thoroughly checked out.
in other news. finny hates a long car ride. our drive to florida was not the most pleasant experience for anyone, a screaming baby tends to make everyone a little tense. he did love the beach and played like it was his job. it was awesome.
ill come back and edit later if anything comes of the eye dr, although im really expecting it to be totally normy.
Monday, September 10, 2012
your epidermis is showing.
we go to see a pediatric dermatologist this morning for finnys giant birthmark... im not thinking anything definitive will happen, especially when they ask about his history and i inform them of all the 173 tests we're currently undergoing for everything in this poor little munkins life.
they will probably just send whatever their findings are to the neuro, and then tell us to keep them informed of everything on the neuro and genetic specialist side of things...
fun fun.
ill update later if theres anything interesting...
they will probably just send whatever their findings are to the neuro, and then tell us to keep them informed of everything on the neuro and genetic specialist side of things...
fun fun.
ill update later if theres anything interesting...
Friday, September 7, 2012
motivation.
we're leaving for a big roadtrip next week to visit a ton of family and we are so excited! a nice little break from all the current craziness before more craziness ensues...
but a big part of the excitement is that the boys will be able to play with cousins that they havent seen in a long time, one of whom they havent even met yet, shes just a little younger than finley. im hoping that with all the kids running around and playing together that finny will just get up and start playing with them. our therapist even mentioned the same thing... other kids are a big motivator.
so, fingers crossed, when we get back i will have some awesome stories and videos of my babies walking, running, and playing together! that would be the best.
but a big part of the excitement is that the boys will be able to play with cousins that they havent seen in a long time, one of whom they havent even met yet, shes just a little younger than finley. im hoping that with all the kids running around and playing together that finny will just get up and start playing with them. our therapist even mentioned the same thing... other kids are a big motivator.
so, fingers crossed, when we get back i will have some awesome stories and videos of my babies walking, running, and playing together! that would be the best.
Thursday, September 6, 2012
tests, tests, tests.
AT LAST! we got an appt at the hospital for finnys big MRI... after two days of back and forth calling of the neurologist, our insurance, and the pediatric radiology patient coordinator, he goes in on the 26th. im relieved to finally have all the appointments made, but of course a little anxious about the baby having to go through all of this. and while i understand the reasoning, i really hate that he has to be put out for the MRI, it just makes me nervous.
and once the MRI is done, i think it will give us a ton of answers, and totally confirm my belief that my baby boy is that 15 % that is/and will be intellectually normal. if all we have to deal with is his slight physical delay, then i will be the happiest mama ever! we'll just keep going to physical therapy and get him back on track.
speaking of physical therapy... our last appt was two weeks ago because his therapist (who is fantastic, btw) went on vacay. anyway, baby boy took his first steps! it was super awesome, and totally emotional. easily in my top 5 best days ever. he took about 8 steps unassisted in a row, i recorded him taking a few at a time, and he hasnt taken that many since but thats ok, he did it once, he'll do it again.
and once the MRI is done, i think it will give us a ton of answers, and totally confirm my belief that my baby boy is that 15 % that is/and will be intellectually normal. if all we have to deal with is his slight physical delay, then i will be the happiest mama ever! we'll just keep going to physical therapy and get him back on track.
speaking of physical therapy... our last appt was two weeks ago because his therapist (who is fantastic, btw) went on vacay. anyway, baby boy took his first steps! it was super awesome, and totally emotional. easily in my top 5 best days ever. he took about 8 steps unassisted in a row, i recorded him taking a few at a time, and he hasnt taken that many since but thats ok, he did it once, he'll do it again.
Wednesday, September 5, 2012
the beginning.
so about midway through my pregnancy with the second love of my life, we realized that there was a problem... again. my little man wasnt quite growing on track, but it didnt really surprise me or even worry me too much because my first son also had intrauterine growth retardation and he was and is perfect.
i was induced the day he was due and other than the epidural not taking, delivery was fine. he was a little upside down in there, but through some fancy pushing by yours truly and the help of a fab ob, all was fine. he was 6.14 lbs, scored well on the apgar, totes normy.
fast forward a little... hes 10 months old and still not sitting up without leaning forward on his arms, kinda like a sweet yoga pose. my baby sees the nurse practitioner at our pediatricians office and i absolutely love her, she recommended that we go see a physical therpist just to see what they think. we made our first appointment and we've been going since march. he was diagnosed with Hypotonia, and now wears ankle/foot braces to help keep his feet a little more straight when he walks. hes made a ton of progress. he sits unassisted and can crawl like its nobodys business. hes walking if he has a little help, but has taken a few steps here and there all on his own.
meanwhile... his head is tiny. but so are his dads, his brothers, and his mamas. so we kinda just brushed it off for awhile thinking it would catch up. but it didnt, its way small and doesnt seem to be growing on track, so we were sent to a neurologist. after our visit with him, finny was disganosed with Microcephaly so we have to get more tests done to see what exactly we're dealing with. we got some blood work and urine anaysis done, we have an MRI scheduled in a couple weeks, and we'll see a genetic specialist in january. luckily we wont have to wait that long for answers, we should get some kind of idea of whats going on once the neuro recieves all the other info. oh yeah, the little man also has a giant birthmark which could be nothing, 'just a birthmark,' or it could mean something else, so we see a pediatric dermatologist this monday. apparently there is some kinda connection between large Cafe au lait spots and some of his other issues, so i guess we'll see, the neuro was pretty interested in it and wants all the results from the dermatologist as well. and weirdly enough, when i made the appt with the genetic specialist about his microcephaly, the first question was if he has cafe au lait spots... i dont know, but i guess well find out.
im sure theres tons of stuff im leaving out right now, but i will come back and update this first post as i remember things. im currently writing this while two toddlers are running around me. :)
i was induced the day he was due and other than the epidural not taking, delivery was fine. he was a little upside down in there, but through some fancy pushing by yours truly and the help of a fab ob, all was fine. he was 6.14 lbs, scored well on the apgar, totes normy.
fast forward a little... hes 10 months old and still not sitting up without leaning forward on his arms, kinda like a sweet yoga pose. my baby sees the nurse practitioner at our pediatricians office and i absolutely love her, she recommended that we go see a physical therpist just to see what they think. we made our first appointment and we've been going since march. he was diagnosed with Hypotonia, and now wears ankle/foot braces to help keep his feet a little more straight when he walks. hes made a ton of progress. he sits unassisted and can crawl like its nobodys business. hes walking if he has a little help, but has taken a few steps here and there all on his own.
meanwhile... his head is tiny. but so are his dads, his brothers, and his mamas. so we kinda just brushed it off for awhile thinking it would catch up. but it didnt, its way small and doesnt seem to be growing on track, so we were sent to a neurologist. after our visit with him, finny was disganosed with Microcephaly so we have to get more tests done to see what exactly we're dealing with. we got some blood work and urine anaysis done, we have an MRI scheduled in a couple weeks, and we'll see a genetic specialist in january. luckily we wont have to wait that long for answers, we should get some kind of idea of whats going on once the neuro recieves all the other info. oh yeah, the little man also has a giant birthmark which could be nothing, 'just a birthmark,' or it could mean something else, so we see a pediatric dermatologist this monday. apparently there is some kinda connection between large Cafe au lait spots and some of his other issues, so i guess we'll see, the neuro was pretty interested in it and wants all the results from the dermatologist as well. and weirdly enough, when i made the appt with the genetic specialist about his microcephaly, the first question was if he has cafe au lait spots... i dont know, but i guess well find out.
im sure theres tons of stuff im leaving out right now, but i will come back and update this first post as i remember things. im currently writing this while two toddlers are running around me. :)
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