Monday, April 27, 2009

Out of the mouths . . . part 5

While watching a Superman cartoon when Superman was with his adoptive parents, Johnathan and Martha, Ethan was talking about being adopted. "Jesus help adopted me, my family."

He has a pretty good understanding of how God can form a family I think.

Blast from the past

I just ran across these videos that we had of Ethan at the orphanage just a couple of weeks before we brought him home. We had sent a disposable video camera in a care package and they gave it back to us when we got Ethan. Here are a few of the videos that they took.

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At then end they are having him say Baba (dad) and Mama (mom)

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Here you can see the area around the orphanage as well as Ethan running and playing with his nannies.

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Here we go Loopy Loo!

Sunday, April 26, 2009

Sunday

Ethan and I went to church this morning to a small church with not very many people which was good. He made it through most of service then was getting achy and ready to move around. We went for a little walk around and that seemed to help. It was nice to get out with him a little bit, but I do see why they don't want him at school, it wore him out, and he also got bumped on his back and that made quite a grimace.

We start physical therapy on Monday morning and go back for a follow up with the neurosurgeon on Wednesday. I have feeling PT will be really hard for him right now, but it is definitely needed to help him get walking better and help strengthen his core muscles to help him sit up straighter. He had been leaning a lot to the side before surgery, and now after moving around all those muscles in his back, he's very weak around his stomach and back.

It seemed to take him quite a while to start moving again, but now that he has, he's been doing so much better each day.

Friday, April 24, 2009

On the move

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I thought I had heard something coming from the other room. Guess who decided to practice walking on his own. Then he wanted me to take a picture(video) to show Daddy.

Here you go! It's so great to see him up and moving a bit. We start back to some PT on Monday to help get his strength back.

Thursday, April 23, 2009

Thursday

This morning Ethan had fun playing a shapes game on the computer.
This afternoon . . .
Drum roll please . . .
Ethan walked from the van to a chair in the family room ALL BY HIMSELF!!!!
Yeah!!!! He was pretty worn out afterwards, but so much better than he's done so far.

Tuesday, April 21, 2009

Wii


Ethan's super cool teacher came over this afternoon to work with Ethan since he can't go back to school yet. After they were done he and Brandon wanted to play Wii.
He was pretty worn out so only a few minutes into the game he fell asleep, Wii remote in his hand.



Tuesday

This morning Ethan woke up and after his morning "snuggle with mom" he wanted to walk to the living room instead of ride the wheelchair! He made it the whole way just holding my hands, then the last couple of feet he wanted to try by himself.

He wore himself out pretty well though and is taking a nap right now. He deserves it, he worked hard this morning.

Monday, April 20, 2009

Monday


Up in the wheelchair, but he'd just been walking and was poohed out. Looks pretty pitiful doesn't he?




Daddy got him outside for a few minutes for a short walk and some fresh air.
He has taken a few steps on his own, and walked a couple yards at a time while holding onto our hands. I think he can do more, but he's scared, and his back does hurt after moving that much. We just need to get a little more every day so we can gain back our strength and endurance.

Saturday, April 18, 2009

Saturday

Ethan has been much more awake today. We've been watching movies and we even had PT come and teach us how to help him log roll to get on his side so we can help him sit up in a way that won't hurt the incision on his back. We also go into the wheelchair for a short time this morning, then this afternoon we helped him take a few steps on very wobbly and weak legs. After that, we had a nice stroll to the rooftop garden and the playroom. I forgot to bring my camera, so no pictures from our outing. We're supposed to get him up into the wheelchair again later around dinnertime to help him get used to sitting. Tomorrow PT will be here to work more on walking before they'll let him go home. There is a chance we'll go home tomorrow, depending on how well he can get back to walking and that his bowels will move. We'll see how things go. He's been pretty slow to get moving again after this surgery.

Friday, April 17, 2009

Friday


The PT came in today and stretched his feet and ankles then got him up into the chair. He was very tired and sore after that. I watched as she stretched him, and it looked to me like he was able to flex better already. This is our loaner wheelchair that we can use as we recuperate for endurance.
Ethan got a couple of gifts today from people at Daddy's work, as well as a few email cards that had been sent to the hospital for him. I think tomorrow there will be lots more cards from what I've heard. We also had a visitor. Thanks for stopping by Julie, Jacob and Erin, and thanks for the gifts. Mom is sure excited for the doughnuts.
Tomorrow the goal is to get him up on his feet. I'm not sure how well that is going to go because he didn't sit up very much today.

Gotcha Day Video

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Gotcha Day

Today is our second Gotcha Day. It's hard to believe it's been two whole years since we first had Ethan in our arms. I think I'll wait to put up some then and now pictures until after he has his sponge bath later.

Ethan is doing great. He started waking up during the night. Fine for him, yawn for mom. He's been drinking great and the IV fluids should be able to be gone later as long as he keeps drinking well this morning. He still hasn't eaten much, but maybe now that he's able to start sitting up a little more instead of flat on his back or side he might be more ready to eat something.

I'll give more updates as we go through today and have physical therapy and occupational therapy.

Thursday, April 16, 2009

Sleeping, eating and . . . flowers?


We're still sleeping quite a bit. Ethan has a couple of raw spots from the tape they had the tubes and mask held on with.

They raised the head of the bed just a little bit and that made it a little easier to eat. He only ate 4 bites of noodles from his chicken noodle soup and a little over one slice of canned peaches. But that's our best yet.
Ethan had a visitor today but he slept right through it. We had to take a picture so he'd believe me that he had a dog dressed up as a flower come to see him.
They took him off the last little bit of sedation medicine that he was getting. He was starting to have a few respiratory issues so they wanted to go ahead and get him off the sedation because it can cause the respiratory things as a side effect. he's still on all the pain meds though.







Wednesday, April 15, 2009

Regular room

Snoozing in PICU
Snoozing in a regular room. Can you see the trend? Luckily they are keeping him enough sedated to sleep alot, which helps keep him laying flat so that the dura can heal and have no CSF leaks.

This is the view from our room







Day 2


Ethan got a new DS from Grandma and Papa to help pass the time while in the hospital. It was a great distraction while we were waiting for surgery. We were delayed from the original 8:50 until they took him back at 10:30 and started the surgery at 11:15. Then it was a great distraction for mom to play while we waited through the 6 hour surgery. ;o)



My friend Mary and her kids came by to hang out while we waited as well. It was so nice to see them and be entertained. I somehow missed getting pics of the rest of the family though.


Ethan had a good night. They did have to raise his pain meds a bit during the night because he was in pain. His blood pressure was a little elevated they think because of the pain. He has a slight temp this morning so he's also had some Tylenol. They are moving him to a room on the floor today and starting to ween down the sedation meds slowly. Hopefully VERY SLOWLY. That was one of our biggest problems last time was when they tried to ween him off to much too soon and he thrashed around and tried to rip out the IVs and to sit up. He has to stay laying flat for at least another day before they will let him start elevating at all. Last time, at University, they kept him in PICU the whole time they had to have him sedated at all. Here they can keep the sedation going in a regular room as well. The PICU was nice, but a regular room might be nice as well, we are in a corner room so two hallways and a lot more light in the room all night here in PICU.

We haven't seen his NS yet but one that worked with him in the OR. He said that all the tethering was old and it didn't look like there was any new tethering. He also said that they removed a dermoid about the size of a walnut as well so his cord is now totally free floating the way it's supposed to be.

Thank you again to Mary for coming and keep us company.
Thanks Dick & Cheryl for the cute puppy dog. We showed Ethan last night but I'm not sure if he'll remember it because of the sedation.





Tuesday, April 14, 2009

done

The surgeon just came in. He feels that this wasn't a new tethering but that he was still tethered from the last time. He said that there was only a small part of hte dura that they had detethered from last time and this time he did an aggressive detether from L2 to S1 and feels good that since this wasn't a new tethering that we shouldn't have to do this every 2 years!!!!!

We feel very good about things. I'm waiting for them to call be back to recovery to see him. They'll keep him on a pump with narcotics and sedation through tonight and probably tomorrow as well before they start to ween him off of anything.

Thank you again for your continued prayers.

Starting to close

I just got the call at 4:00 pm that they are finished with the detether and starting to close. It takes an hour to close because they have to close it in layers starting with the the dura around the spinal cord then each layer around that.

Thank you for all your continued prayers.

Still in surgery

The started around 11:15 and we just got an update just before 3pm that they are still working. He was significantly tethered. They will call us when they start to close him up and that should take about an hour to close.

I had a great visit from my friend Mary and her kiddos today to help pass the time.

Thanks Mary!!!!!

I did find out that there isn't WiFi in the ICU rooms so I might not get to update quite as often as I'd hoped, but I'll try to at least get an update out once a day.

Thanks for all your prayers.


Lisa

Monday, April 13, 2009

Easter


Ethan continually asked when we could dye eggs. When it was time, he fell asleep before we could start. When he woke up, he still had plenty of time to dye his eggs.





The Easter bunny decided it would be easier, and probably cheaper to put quarters and dimes in the Easter eggs instead of candy. Better for all of us that way, I'm sure.





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Thursday, April 09, 2009

Another lost tooth


Ethan is the king of wiggling his loose tooth until its ready to come out. I don't know how the tooth fairy is going to keep up! Hopefully this is it for a while.

Out of the mouths . . . part 4

Ethan has another loose tooth. He can't seem to handle having it wiggle in his mouth so as soon as it just starts to wiggle he works on it and continually asks to pull it.

Today he asked his Para to pull his tooth, which she obviously can't do. She wouldn't even touch it and he told her "But it's clean. I brushed my teeth this morning."

Guess I'll get to pull another tooth tonight.

Tuesday, April 07, 2009

Surgery

Ethan is schedule for another spinal cord detether surgery on April 14th at St Louis Children's Hospital. Shortly after we brought him home, on May 17, 2007 he had his first surgery since his adoption. //http://clineadoption.blogspot.com/2007/05/surgery-update.html This will be the same kind of surgery. We have seen a rapid deterioration of his orthopedic function in the past several months, along with increased pain and some urological symptoms. Not that we're excited that he has to have surgery, but we're very glad that we're able to get this done quickly in order to stop the progression of his symptoms.

We'll be at the hospital for around a week, with him in ICU for the first part, having to lay flat so that the dura around the spinal cord can heal properly. If you're in the St Louis area, we'd love a visit, if not you can send Ethan a card through the hospital's website http://www.stlouischildrens.org/content/SendaGiftorGreeting.htm and they will deliver it the next day to his room.

Ethan is actually dealing with having his 4th surgery since coming home very well. He was the most worried that he would have a button on the bottom of his foot like his orthopedic surgery. Once I assured him that this surgery he wouldn't have casts he was fine. I didn't tell him that sometime after he has recuperated from this surgery he will have another orthopedic surgery and will have casts on both legs. We'll save that information until that surgery is scheduled.

The hospital has WiFi so I should be able to keep everyone updated throughout our stay.

We would appreciate your prayers to guide the surgeons hands during surgery and that this will have a positive effect on Ethan's motor function.

Saturday, April 04, 2009

Out of the mouths . . . part 3

Tonight we watched the animated Ten Commandments movie. At one point when Ramses said that he was the only god, Ethan replied . . .

He not God. God in heaven. He not heaven. He not fly. Not have wings. (flapping arms like a bird)

Thursday, April 02, 2009

More of the lost videos

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As we get closer to Ethan's second Gotcha Day these videos seem even more special, seeing those first few days and weeks we were together. So many things have changed yet so many things have remained the same. Ethan still wants to follow GeGe around and do what he does.

Wednesday, April 01, 2009

Swinging

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This was Ethan's first time on the swing set. He figured things out pretty quickly. As you can see at the end of the video the neighbor dog came around and he wasn't to sure about her and repeated Daddy "Sheba go home."