Tuesday, June 29, 2010

Follow Up: Luke's "Twitches"

Father's Day Weekend Pictures:

Hospital Pictures:

Well, let's just pick up where my last post left off.

Tuesday afternoon (6/22)
I called the neurologist's office & asked to talk to Dr. Toor. Now trust me I know, I wasn't going to actually TALK to the doctor himself, I just wanted to get the message to him that Luke was stil having the episodes & that we'd like to do the longer EEG. The receptionist who answered was a major you-know-what and told me to call the hospital after 5 pm when he'd be on-call.

So, that's what I did.  I called & was forwarded to his voice mail at his OFFICE!  Grrr...I was mad.  So, we went to bed, figuring it would be the next day before they got back to us.

Wednesday 6/23
Low & behold, 8:30 am rolled around & they called to schedule Luke for the first EEG they had available.  A whole day WASTED because that receptionist wouldn't just get him a message during the day.  The first EEG appointment wasn't until Thursday, so we had to tough it out all through Wednesday with no news and no relief for poor Luke, who had a LOT of spasms on Wednesday.

Wednesday night Mom & Dad got into town, so Luke & I headed over to Mandy's house to visit and have dinner.  Only, I ate Chic Fil A on the way because they were having tacos.  We had a good visit & headed home at bedtime.

Thursday 6/24
Thursday morning we got up super early and Tim took me to the hospital.  He stayed with us until after we were all checked in & then headed to work.

Luke had to get strapped down again but it wasn't as bad as last time.  The woman didn't restrain his legs, just his arms, and I was able to play with him because we weren't worried about getting him to take a nap.  He only cried a little bit and was relatively calm.  He got his head all glued up & then all wrapped up & then he got a "kitty" book bag to keep his EEG pack in.  Everything was covered in gauze so we were pretty well set.

She let me carry him into the room where they do the EEG and we took our stroller and everything in there too.  There was a bed, a reclining chair, a children's table, and a t.v.  We mostly hung out on the bed, since it was the easiest place for her to watch him.  They also brought in an exersaucer, but I didn't put him in it too much because its hard to see his spasms when he's being all active.

We got started around 8:30-9am.  Basically, Luke played on the bed w/ his bag of toys, and I watched him.  For four hours.  It was boring!  I had to push a button every time he had a spasm, so I couldn't even relax or doze off!

Andrew from church (Rachel's "Student" Preacher) came by for a short visit & prayed over Lukey.  That was around 10:30.

When the EEG was done, the doctor came in & saw us.  He said that Luke's brain was perfect!  He said even during the spasms there was no irregular brain wave activity, which means that Luke is NOT having seizures.  They sure do look & act like seizures, but on a technical level they are NOT seizures, so we have taken to calling them "ticks, episodes, or spasms".

So, after the neurologist basically told me we were out of luck & to "wait & see", Amanda called (while I was waiting on Mom to pick us up) to tell me she found out what Luke has!  Her "Auntie of the year" diagnosis is "Sandifer's Syndrome".

Basically, this gastroenterological disorder can explain ALL of Luke's "problems".  Even his torticollis, it might not be my small uterus's fault!  I believe that this is what Luke has & immediately started him back on his reflux medicine!  Since Thursday afternoon he has still been having ticks during the afternoon & early evening hours & even into the late evening a couple times.  He seems to be getting better though, because he is nursing for 30 minute stretches again.

After Mom picked us up on Thursday we pretty much just hung out at home until Tim got home.  We headed to Buffalo Wild Wings in Virginia Beach for dinner with Rachel & her husband Brandon, Robby and her husband Garrett, and Stephanie and her husband Jason, all from church.  It was nice.  After dinner, Luke was NOT feeling well at all, so I took him for a car ride while Tim ran sound at church.  We went to Wal-Mart and then back to get Tim.

*We also got Luke's super mega awesome Woodland Tale longies from Nicole of Dakine Knits in the mail!*

*And Mom fixed up the blue/brown shorties that Melanie just finished making me!!  They are all ready for Lukey to wear now!*

Friday 6/25
Friday morning I had to take Tim to work so that I could have the car to go see Mom.  When we got home, I got our stuff together and let Luke rest/play.  Brianna was at the house too.  We managed to leave around noon to head to Amanda's to pick up Mom & then head to Mandy's work to go swimming.  We got in the pool at close to 2:00 and swam until after 4:00.  It was Luke's 3rd time in a pool (the other 2 were during Memorial Day weekend at Mom & Dad's ice cold hotel pool & hot tub).  He LOVED it!  I brought the little blow up floaty thing Chrissy bought him & he enjoyed floating around (within arm's reach) in it!

After the pool, I had to go back to the house to get Tim.  Luke & I got showered and dressed and then we all headed over to Amanda's around 7 for spaghetti dinner.  Chrissy was there with all 4 of her kids so it was a full house.  Again, we stayed until bed time.

Saturday 6/26
I had offered to host a "Father's Day" dinner at our house since nobody sent Dad anything for Father's Day.  Chrissy asked if we would also make it Carolynn's birthday since that was the last time her family was all going to be together.  So, we got up early and got to work preparing the house for the event.  Tim & Tyler worked in the yard just about all day.  Luke & I did our normal routine (bath, eat, nap, pump, shower, etc.) as well as clean the entire inside of the house & go grocery shopping.

Around 6:30 Mom, Dad, Mandy, and Frankie all showed up.  Betty (our cousin), her boyfriend (Jim), and her son (Aaron), showed up next, followed quickly by Chrissy & her brood of girls.  Tim & Dad grilled chicken, we also had potato salad, potato chips, deviled eggs, corn, and drinks.  It was a good birthday party & we were all exhausted by the time we headed to bed around 11.

Sunday 6/27
Sunday was Tides baseball day.  It was also one of the hottest days this summer!  The heat index was 105* outside.  We were late (are you surprised?) to the game of course, but had planned on getting there well before the 1:15 start anyway.  James, Missy, and T met us there & we had a relatively good time watching the game & trying to stay in the shade.  Tim's knees got burnt but I think he's the only one.  We were all SUPER mega hot by the 7th inning, so we headed to MacArthur Center for some "dinner/lunch" at Chili's.  Only, now that I'm also soy free the only thing I could eat was a nasty salad.

I ended up heading out to the playground to feed Luke anyway.

From the mall we went home, got what we needed for dinner at Amanda's, fed Luke, and then headed to Mandy's house.  Dad was cooking fish for everybody.  I had a major headache & could NOT get rid of it.  Luke was cranky from being out in the sun.  We visited for a while (I spent a lot of time feeding Luke though, so missed out on the visiting.)  and then headed home around 10.

Monday 6/28
Yesterday I called the pediatrician to see if she could change Luke's reflux medicine because we don't think it is lasting the 12 hours it is supposed to.  She said we had to call the GI.  Boo!

Luke & I stayed home all day & kind of just vegged for a while & caught up on rest.  Ashley was home with us, so I was able to get some stuff done on the computer & take a shower!

Tim brought Beth & Steve home from work with him, so I had to go to the store & get some more groceries before we could cook dinner.  Tim made shish-ka-bobs and corn and we all ate together.  Poor Luke hadn't had any Zantac in almost 24 hours at that point & was pretty miserable.  When we finally left about 7:30 to head to the pharmacy to get it & then to Tom & Peggy's for Financial Peace University he ended up crying the entire way!

I drove as fast as I could to get him there and ended up missing the entire group so that I could feed him.  (I did get to watch 45 minutes of NCIS though!)

Afterwards we visited for a few minutes while Peggy snuggled Luke & then we headed home.

Tuesday 6/29
This morning I called the GI, Dr. Konikoff, to see if we could get his advice on Luke's medicine & Sandifer's and amazingly they had an 11 am appointment open tomorrow!  I snatched that up nice & quickly!

Luke has had a nice 2 hour long nap, we're both showered/bathed and dressed & now we just have housework for the rest of the day.  No plans this evening that I can remember so we should be able to relax for the rest of the day.

UPDATE on Luke's "Abilities":

Luke can now army crawl.  He can get onto his hands/knees and rock back & forth and move himself around a little that way.  He can "pivot" in circles.  He will play on the floor in any room of the house & enjoys a little bit (a LITTLE BIT) of alone time!  He is so smart!  He can say Da, Ba, and Pa.  Still no real Ma sound yet, though sometimes when he whines it sounds like Ma.


Melanie said...

Um, your mom fixed up the shorts I made? What does that mean??

I had a bunch of other comments to make, but that just stopped me cold and I can't remember them now. Other than it sucks that Tim didnt' stay with you for the long EEG...

Stephanie said...

It means she finished putting the drawstring on & getting them on him! Calm down chicadee!