Tuesday, June 29, 2010

More Pictures from Hospital

Falling asleep w/ Auntie Mandy on Sunday night
Attempt #1 at putting in his IV....it took 3 tries!
Monday, waiting to go home
Getting his IV taken out by our sweet nurse C
Still sleeping from the sedative on Monday
A tiny glimpse of our sick, sick neighbor baby...please pray for this nameless little fellow!

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.

Wednesday, June 23, 2010

Luke's "Episodes"

You might remember back at Mother's Day Luke had what we thought was a seizure or infantile spasm.  

That was May 9.  We were at the hospital around 8 pm, visiting a friend who had a baby.  Luke was sitting in her bed with her just being his happy old self.  Suddenly, his arms jerked out from his body & he stiffened while arching his back.  His mouth was open in a little gasp and his eyes were glazed over.  It took 4-5 of them (each lasting about 2-3 seconds & coming within minutes of each other) before we realized something was going on.  Over about a 15 minute time-span he had 9-10 of these spasms.

We took him to his pedi & she thought nothing of it.  Said it was probably a one-time thing & if it happened again she'd send us to a neurologist.

Well, we watched & nothing happened so it slipped to the back of our brains.

Then on Father's Day around 6:50 in the evening, Luke was playing on the floor with a new toy & he started doing it again.  He had maybe 5 spasms before we left the house, all in a matter of minutes.  By the time we'd gotten to the hospital around 7:45 he'd had more than a dozen.  They were getting more minor though.  Some were as subtle as squishing his head & shoulder together.

By 10:30 we were told we were being admitted & started getting ready for that.  They scheduled an MRI & a short EEG.  Luke didn't have any more spasms after 8:15 that evening.

We had a rough night.  It took 3 tries to get the IV in his little arms.  The little girl (9monthsold) in the room w/ us cried all night.  Her mom kept YELLING at her to shut up & sleep.    I hadn't had any food since 1:00 in the afternoon.  DH had to go home bc there wasn't room for both of us to sit in Luke's room.

I had to get up @ 3:30 to feed him because he wasn't allowed to nurse after 4 am.  At 6:30 he woke up hungry, but I couldn't feed him.

This was the hardest thing about being in the hospital.  When your baby wants to nurse & you can't it just about broke my heart.  

We had the EEG first thing, around 9 am, Luke was a trooper and slept soundly through it.  Afterwards I was able to nurse him a little but only for a few minutes.  We had to keep him awake, because they wanted him to be tired for the sedative they were going to give him for his MRI @ 2:00.

Around 11 am Luke had another episode w/ about 7 spasms.  One of the nurses (an aid maybe) saw them & got the neurologist to come in.  At first he was like, "That? That's nothing." Because it was just one of the head-to-shoulder twitches, but I know my baby.
I told him, no, that is definitely SOMETHING, he does not normally do that!

After the neuro checked him out he said the EEG was perfect & that he did not believe Luke was having seizures.  He suggested that it was myoclonic jerks, probably benign, and said we'd probably do a longer EEG to make sure.

We toughed it out & he fell asleep around 1:00, with an extremely empty belly.  

Somewhere in there we got a new roommate.  A TINY 9 month old boy, all by himself, no family or anything, with LOTS of problems.  He had a catheter, oxygen, several IV bags, and the nurses were talking about changing his dressings over a surgical site multiple times bc he bled through.  We found out later he was trembling because he was detoxing.  Poor little thing.  How does a 9 month old even GET drugged?  They had formula for him (that someone brought) so I don't think he was breastfed.  Anyway, he broke ALL of our hearts.  Over there struggling to get better ALL BY HIMSELF!  Poor baby.  

(This is where I interject that I absolutely HATE going to Children's bc of all the sick/pathetic children/babies, I am not emotionally stable enough for that!)  

Anyway, back to our MRI.  I cried.  It was the first time I broke down.  They gave him the sedative & he freaked out just like I do.  I hate getting put under.  It freaks me out.  He cried and flailed in my arms for about 6 minutes before he went to sleep.  Then I held him for a few more to make sure.  When the nurse asked me to put him in the great big huge gurney I broke down crying.  She asked if she could take him & that just made it worse!  

Finally, I laid my sweet baby boy on the bed and let them take him into the MRI room.  We weren't allowed to go with him.  We went to the Farm Fresh (yes there is a little store in the hossie) and walked around, used the bathrooms, and made a few phone calls.  I was waiting outside the door when they brought him out of the MRI.

He was still completely out.  We had to force him to wake up.  I was able to nurse him while he was waking up & that was wonderful.  

The neurologist came & said that his MRI was perfect.  So, the neuro changed his mind.  He said we could go home but that if Luke continued to have episodes that we should call him back & he would go ahead and do the longer EEG. 

We went home Monday night.

Tuesday Luke had an episode around 11 am and again around 4 pm.  The one at 11 was a big one, with arms jerking & all, but only like 5 spasms.  The one around 4 pm was smaller, with like 5 spasms but only the head/arm twitch spasms.  

We called the neuro last night & waited for a call back.

He called today.  They scheduled Luke for a 4 hour long video EEG tomorrow morning @ 7:30.  

Luke has had a few random spasms today, none that I could catch on camera or see full-on, so I'm not sure if they were episodes or what.  He has been VERY fussy & only fell asleep for a nap @ 3:00.

So tired on Sunday night, he fell asleep in Mandy's arms, I was waiting to feed him until he had his IV in and could go to sleep for the night.

Saturday, June 19, 2010

8 Months Old

My boy is closer to a year old now than he is to being a baby!  Wow!

So, Luke's 8 month birthday passed with no fanfare what-so-ever.  We went to "Auntie" Melanie's house so she could knit him up a pair of super awesome shorties!  They *only* took 10 hours to knit, and are freaking awesome!  Huge thanks to Melanie!!!  Custom knitting is not cheap or easy & we appreciate her time & effort!

Luke weighs 17 lbs and 12 oz fully clothed.  I know this because we went to the doc on Wednesday to find out what was going on with our little guy.
Sunday he had started running a fever & being fussy, but was generally ok.  I thought it was teething so loaded him up with Motrin, Baby Orajel & Hyland's Teething Gel (the Hyland's is just NOT as effective as the Orajel, so I rotate them).  We went to church, the in-laws, and the beach, and he was ok, fussy & a little feverish but ok.
Overnight his fever raged up to 102.7.  The pediatrician said as long as it didn't go over 104 and it didn't last 3 days he was ok.  Well, Tuesday was day 3 and I made the appointment for Wednesday morning.  (after a couple LONG, sleepless days w/ a super mega fussy feverish baby)
Turns out, Lukey had hand/foot/mouth disease.  A very common viral infection that goes around in the summer.  He only had sores in his mouth (down his throat) and his fever broke Wednesday.  Unfortunately there is nothing they can do for it & so Dr. Curry (who has great bedside manner) said we basically have to tough it out.

Luke sits unassisted & has since March 16.  Luke laughs & "talks".  He says dadadada all the time!  He can do the little "Indian call" with the back of his hand to his mouth.  He can roll from his belly to his back in both directions now.  He has been in physical therapy for his torticollis for 5 weeks now & is making lots of improvements.

He doesn't sleep through the night yet, but does have a pretty solid routine at least.

9:30-up for the day
play, bath, nurse around 11:30-nap
then from 2:00-9:30 his schedule revolves around what we are doing...if we are home he'll normally take another nap around 5 or 7 or both!

He had about 2 weeks of attempting Organic Rice Cereal and although he would eat it, he didn't really like it. (started @ 7 months 5 days) On Saturday June 12 he had some squash at Jay Yanuzzi's wedding.  We tried steaming a butternut squash at home for him & offered it to him on Sunday & Monday but he just played with it & wouldn't eat any.  On Sunday, we tried offering him steamed brocolli at Ruby Tuesday's and he couldn't stand the texture!  He'd get his hand to it, touch it and then recoil like he was disgusted!

His mouth has been too sore to do much more than the required nursing so we haven't tried anything since Monday.  He did take a bottle (Dr. Brown's w/ a preemie nipple) for a while this week.  Nursing was irritating his mouth & so he would chew on the bottle nipple & drink what he got.  I was scared he was getting dehydrated so we gave it a try.  We might try some more now that his mouth is better w/ a bigger nipple & see what he thinks.

Small Talk Six!

See, I'm making a real effort!  Small Talk Six brought to you by the Momdot team is a fun little meme where you answer a question with 6 pictures, words, phrases, or videos!!

This week in honor of Father's Day, What do you & your dad both enjoy/have in common?

1. Chocolate--my Dad & I both love our desserts!
2. Luke--ha ha, no really, my Dad totally gets a kick out of my kid!
3. History stuff--war movies, books, documentaries
4. Chocolate milk
5. Naps
6. Toyotas

Wednesday, June 16, 2010

Picture Frame Collage Wall

I've been excited about this ever since Black Friday when I bought the frames!

Tim finally got my picture frame collage wall started.  I had so many frames & not enough pictures!  I LOVE having all these pictures of my boy up in the living room.  I can't wait to get more pictures & more frames to add to it!

Close up of all the frames--they are all black but are a mix of wood & plastic.  I like the different styles blended together.  We have everything from 3 1/2 x 5- 10x13 up there!

Here you can see the whole wall as it is right now.  With Chrissy living here we have the dog cage & my arts & crafts table set up in the living room as well as a huge pile of filing.  Maybe I'll edit this post after she moves out so you can see our living room properly set up.
Anyway, this shot shows how big the wall is & where we set it up.  I plan on adding to it at least each time we get his pictures done or I print new pictures from the camera.

Click on over to Mama Notes to check out her picture frame collage too!

Why a Car is a 'Need' in Our Life

So, I decided to try to get back into my blogging world.  Mostly because I've been spending so much time on Diaperswappers & diaper related pages that Tim has decided I'm obsessed.  In my opinion, I'm not obsessed that just happens to be what interests me....but I digress.

While I was catching up on the thousands of blogs unread in my Google Reader, I happened across this post by Penniless Parenting.  It talks about Needs vs. Wants and she explains why she & her family decided that a car is a want, not a need.

I can see the logic in her decision making...but I have to disagree.  For us, a car is a need.  

I'll cross examine her logic & explain our thinking:

Penny says: 
Purchasing a car is outrageously expensive, especially where I live. 

New cars are expensive as we know!  We had the truck just under 2 years before deciding to sell it at a small loss.  Fortunately for us, my car, a 2005 Toyota Corolla, which can easily be expected to last until 2015, is paid for.  We have no car payment.  We will have to do maintenance/upkeep on it, but fortunately as well our oil changes are covered for a while longer.

Penny says:
The price of gasoline around here has gone up to $6.65 per gallon. 

That is just ridiculous!  If gas cost that much here we definitely would drive a LOT less.  As it is we already conserve gas as much as we can by carpooling & not making unnecessary trips to Virginia Beach or Suffolk.

Penny says:
Insurance is another $85 per month.

Unfortunately, good insurance does cost, and while I don't know what we pay, it is worth it for the peace of mind to know that if anything happens to our little family we will be taken care of financially.

Penny says:
Emissions tests. Another $250 yearly making that 20 dollars per month.

These are not required here in the good ole USofA.

Penny says:Maintenance. If you spend a lot of anew car you can hope to pay fewer maintenance costs, but if you're looking to save at the used car dealership, you'll most likely be paying hundreds a year in regular maintenance, like oil changes, flat tires, and just general fine tuning, not to mention hit and runs, scratches, or accidents that were deemed your fault.
Extra Expenses. Traffic tickets, parking tickets, and parking fees are just some of these extras.

Ok, now these two are just silly to me!  Our oil changes are included in what I paid for my car, Tim does MOST if not all of our maintenance, my car has never been "in the shop".  Hit & runs and accidents are emergencies not something to plan/budge for.  Fortunately our insurance is awesome and covered all but about $600 of the one accident I've had in my car.  

Traffic & parking tickets are the result of either stupidity or arrogance.  Follow the laws and you won't get tickets.  We haven't had either of those in years.  The only places I can think of that we pay to park are MacArthur Center Mall & Busch Gardens.  We've been to MCM about 5 times in the last year & its been more than a year since we went to Busch Gardens. 

Penny says:
Cars Promote Spending. In addition to all the other money sucking aspects of owning a car, when it is easier to get around, it is easy to go to money wasting venues. 

Our new way of managing our money really helps alleviate this.  We don't do a lot of impulse shopping and plan most of our purchases.  We always grocery shop with a list and eat out only when it really is needed or a special occasion.  We also have an eating out budget, so the fact that we have a car doesn't really play into that, if we didn't have a car, we'd find some other way to get out for food.  

Penny says:Pollution and Oil Reliance. I wrote about these two in more depth over here- "Why bother conserving?"
Congestion. There are too many cars on the road...
Danger. Car accidents are one of the leading causes of death in the world. 
Laziness. I'll be shot for saying this, but I think having a car makes people more lazy. 

Pollution & Oil reliance are really political topics I try not to get into on my blog.  I do my part in recycling & not using paper products to help where I feel I can.  I'll leave it at that even though I do have more of an opinion than that.
Congestion is a matter of where you live.  Head 2 hours west to Buckingham.  There's no congestion there.  So, again I think it's relative.

From the CDC:
Number of deaths for leading causes of death

  • Heart disease: 631,636

  • Cancer: 559,888

  • Stroke (cerebrovascular diseases): 137,119

  • Chronic lower respiratory diseases: 124,583

  • Accidents (unintentional injuries): 121,599

  • Diabetes: 72,449

  • Alzheimer's disease: 72,432

  • Influenza and Pneumonia: 56,326

  • Nephritis, nephrotic syndrome, and nephrosis: 45,344

  • Septicemia: 34,234

ALL kinds of accidents are lumped together ranking FIFTH on the leading causes of death.  I think I have bigger things to worry about.  Mostly my health.  
Finally, laziness, I do not find that my car is an excuse to not exercise, my busy lifestyle maybe, but not my car.  There is literally NOTHING within reasonable walking distance to us.  I could DRIVE all the way to Virginia Beach in the time it would take me to walk one-way to 7-11.  I could probably drive to the grocery store in Virginia Beach, shop and drive home in the time it would take me to walk one-way to the closest Wal-Mart.  

Finally, our biggest reason for NEEDING a car is the time it would take for Tim to otherwise get to work.  Living closer to the base is not possible (we could live closer, but still not within walking distance & Tim can't ride a bike).  The commute time via the HRT system would be 3 hours to work in the morning and 3 hours & 15 minutes on the way home.  Adding 6 hours to the time he'd be away from Luke & I.  That's just silly.  

So, we need a car.  That's my story & I'm sticking to it!