Snowless November

Wow! November came and went with a blink of a eye. Logan has started trying to talk and it's wonderful. Dog and no are two of his favorites even if they do come out "da" and oo, respectively. Logan was denied life insurance until we know in January how his kidneys are developing. Logan is growing fast and eats constantly it seems. Most days he's out eating his brother. His classes with ASD are going well and we've seen major growth this month improvement!
His new words:
Daddy
Mama
Dog with sign "da"
More sign "mo"
quack quack "kwa kwa" for duck
moo for any other animal
down "dow"
eee "eat" and sign
done sign and "da"
cookie "ooeee" and sign
hi with sign
bye bye with sign
book "boo" with sign
uh oh
mine "ma" and sign
baby "bay bee" and sign
hat "aaa" and sign
thank you "aaa oo" and sign
ow

Logan's Kidney Update

I know I've been really slacking on this blog. I've been kept super busy with Ethan in Kindergarten now and all the fun stuff to see and do here in Ct. Logan had his second nephrology appointment yesterday at Yale Children's Medical Clinic. We got a big "Let's wait and see what happens." In layman's terms the opening/exit connecting Logan's kidney's to his bladder is too large (yes that means malformed kidneys.) The good news is that we're hoping he outgrows it. So in the mean time, keep an I out for fevers and ultrasound again in 6mo.
Ethan is liking kindergarten and is adjusting(somewhat). Sometimes he still cries when you drop him off. We've really been enjoying the nice weather up here. Typically, the temps are in the 60s-40s so very pleasant. We've found a great church and Logan will be getting baptised at the end of October. Logan is now running everywhere and enjoys emptying any cabinets/drawers he can find. He is also a little too curious with electrical wires so you have to watch him nonstop. He's getting very cool glow in the dark earmolds tomorrow. Not much progress with that. We're still working on getting some speech. He's very stubborn and doesn't want to sign or talk. He his is father's child.

Connecticut Pics

http://www.flickr.com/photos/41985488@N05/?saved=1

Finally Settled In and Logan's New Teacher

Hurray! All boxes are officially unpacked and somewhat put away. Logan has had a few classes with a teacher from the American School for the Deaf. The teacher comes to our house once a week to work with him. We're working on both signing and speech. We have a new ba ba ba ba sound, which is very exciting. I have lots of laundry today so I'm going to drop off here. I'll put up new pics soon.

Rainy

It's rainy today. Probably should work on the house but I'm lacking in motivation. Watching Logan's low grade fever and hoping he's just teething. Logan starts working with his new teacher tomorrow!

VCUG

Hurray! Logan's VCUG was negative. I'm thinking that's good. That means we can postpone his visit to the nephrologist for a couple weeks. Very excited about that. All the boxes are now empty and we're slowly getting settled in. We're definitely loving the weather up here.

We're Here!

We'll we're getting settled in to Connecticut and we really like our new house and neighborhood. Ethan already has neighborhood friends and we're in walking distance to his school. We also have a playground in our backyard and a community pool so this should be nice. We're still working on unpacking but the majority of the house is kinda set up. We've got a few things damaged/missing including my butterfly sink strainer (Laura remember where you got it?) ERRRRR. Seth took us the the Providence Zoo this weekend and they had an awesome butterfly house and a beautiful park surrounding the zoo. Seth's in denial that we won't be there once a month, at least while the weather holds up. Logan definitely needs his VCUG and I got the referral for it in the mail Saturday. I'll post some new pics soon.

Moving!!!

Hi all. I will not be posting for about 2 weeks from today. We are currently packing up to head to Connecticut. Will post updates from Logan's nephrologist and hearing updates when they are available. Look out Groton here we come!

Fourth of July, Disney, 1st Haircut Pics

BubbleShare: Share photos - Easy Photo Sharing

Disney and the Fourth of July

Hey all. Long time no talk I know. We had the brilliant idea to take the boys to Disney on The Fourth of July weekend. Logan's doctors appointments went kinda good. Logan did not respond in his booth hearing test at his new ENT's office so we have a repeat on Friday. We also got a bonus of an ear infection in his right ear courtesy of his hearing aids so he was on antibiotics. His nephrologist viewed his kidney ultrasound and actually had to run to Shands and back to get the video of it. He's sending it on to a friend of his that's a urologist in California for a consult. We're waiting to hear back from him. Logan's CT scan showed a negative temporal bone scan. That's both good and bad I think. That means no tumor on his cochlea good, but no abnormalities with the cochlea either, bad. This tells us it's definitely a sensorineural hearing loss.
The boys had a great time at Disney and of course the fireworks were great we stayed at the Caribbean Beach resort. It was nice to get away. Logan loved the characters but not so much the Tigger hat. You'll understand soon. I'll post pics on here soon!
Logan got his first haircut today and is up to two teeth cutting through on bottom. I am still his favorite chew toy. Pics of these will be up soon too!

Logan vs. Cake Really Funny Logan's First Bday

Logan is Cake Monster Baby

BubbleShare: Share photos - Easy Photo Sharing

Medical Update

Logan's doc appts went well. We're waiting to here back from his ENT to schedule more hearing tests. He didn't do very well in the booth so we're scheduling a new ABR hopefully before we move. Logan's nephrologist needed the video of ultrasound of his kidneys. After we got that to him he was forwarding it to a urologist that's a friend of his for a side consult. Hope to hear back soon on what the game plan's going to be! Happy First Birthday Logan!

Logan's First Birthday and Seth's Home.

Today's Logan's FIRST birthday. I'll write more about both of his doctor's appts tomorrow! Seth's Home!

Meeting the best doc in town today!

Logan and I are heading down to Jax today to meet with the chief of otolarynology at Nemour's children's hospital. He hasn't been looked over in a while so this should be exciting. I'm hoping to get another hearing test today as well. Logan is super busy these days cruising up and down the couch. I'll get some pictures up of him with his supercool green earmolds on here soon. Logan cut his first tooth a few days ago and that has made him a pleasure to be around (maximum sarcasm implied). Tomorrow is his first birthday so tomorrow will be another fun and busy day. Updates to come.

Teething and CT Scan #3

Well today was an exciting day! Logan has cut his first tooth. It's the bottom left and not very visible yet but definitely through the gums. That means no more using Mama for a chew toy. Logan's CT scan went well yesterday. I didn't know that they'd use general anesthesia. I figured maybe a shot or some gas. They have to do everything the hard way though. That means he had to be tubed and given an IV and the whole nine yards. There had to be 15 people in the CT scan room with us. We did use some gas to relax him enough for the IV. It only took 5 people to hold him down. He finally fell asleep watching me sign sleep to him. After that we headed down to recovery and he was very grumpy and groggy. We had to wait an hour before he could go home. He was definitely mad at the world. I just hope we don't have to repeat this process for the nephrologist.

BOR info

Here's some information about BOR also known as Branchio-oto-Renal syndrome. http://www.potterssyndrome.org/bor.html
We're working on a diagnosis for Logan. If you are a family member or know of a family member that has had a history of ear "pits" or renal problems please let us know!

I hate Shands!

In case I haven't talked to you in a while and you're just checking in on us. I need to mention how much I hate Shands. We went this past week to try again to get Logan's CAT scan done. We need a CAT scan of his brain and ears so our ENTs know more about what's causing his SNHL. The previous time the CAT scan was ordered without sedation and is efinitely needed for an 11 month old that is an expert in evasive maneuvers. So this time it was ordered WITH sedation and I called to verify twice. So I drive to Jacksonville *again and get him checked in at the CAT Scan Clinic and got his little hospital band on his foot and all that good jazz and we wait. Finally we get sent up to Preop so they can sedate Logan and go ahead and bring him down for the scan. Only one small problem, the lady never actually scheduled him with Anesthesiology! So we get shuffled here and there and after 3 hours finally get told we'll have to reschedule for next month. That is when my flames came out. I said no, Friday works for me at this time. At that point they have reason to be afraid of me. So Friday at 11:30 it is. I don't care who they had to call in at that point. My friends are saving bail money for me in case they screw up again next week.

Welcome to Holland!

http://www.our-kids.org/Archives/Holland.html

Little Stinker=Little Trooper

Today was exceptionally productive and Logan was very patient. Today's to do list consisted of
1. Mom's Club Breakfast at a Donut Place (and Sugar Stop number 1)
2. Speech Therapy, I know she appreciated the sugar stop, but we got there early. Ethan burned off most of sugar while Logan slept on me and saved it for her.
3. To the base PSD to see about our move, also not the least bit helpful there.
4. Publix to order Logan's 1st Bday cake and free baby smash cake(photos to come). Both kids got free cookies from the nice baker lady making this Sugar Stop number 2.
5. Era to drop off paperwork.
6. Home for quick lunch and nap, not that they were very hungry after the sugar stops, or very sleepy.
7. After naps headed back out to the base to drop off more paperwork.
8. Gas after running so much.
9. UPS store to fax stuff to different base.
10. Walmart to get Logan a few little birthday gifts and grab some milk (and candy for their almost insane Mom). Of course Ethan talked me into to giving him some making this Sugar Stop number 3.
11. Home. Thank goodness. Today was insane!! Better call and double check my dental insurance after today!