Hello Blog...its us...we're back

Well...I thought about saying, "with the new year upon us, we are back to updating our blog more regularly", but honestly, it's over a month in to the new year and we still have not updated the blog...until now.

First off...Kristi and I wanted to apologize to everyone who follows us as we know how much everyone loves to keep track of everything that Samantha is doing. Honestly, we have been selfish in that we have dedicated all of our free time to playing with Samantha versus sharing our experiences with all of you.

Today, I'm not going to spend too much time highlighting everything that has been going on, but instead will remind everyone of the link to our picasa site where you can see all of the pictures we have taken over the past few months. Click here to see our pictures. There are a lot of great pictures and great videos.

For the record, today, Samantha took her first steps all by herself.
More to come, we promise to stay on top of the blogs in the future. Be sure to check out the picutres.

Nick, Kristi & Samantha

Link to pictures from our beach trip

Here is the link to some pictures that we posted from our beach trip. Back to the grind...all work, no more play. Can't wait until next year...i'm already counting down the days!

Click here for Florida Picutres

Wow... so much to report....

Hello everyone. I can't believe over a month has gone by and i haven't had a second to report on life in the Estes household. I guess it's been a little crazier that i realized, although most people can relate to how busy life gets and there's really no way around it. We are actually at the beach this week, and tonight is our last night.... i'm so sad to have to return to reality. it's been a great week, although chilly here in Santa Rosa Beach Fl (next to Destin). We had this trip planned for Labor Day week, although our plans were sadly changed. The nice people who we rented from gave us a credit to use for another week. We were so happy to be able to get a break. Even though it was a little chilly here in Fl, it has kind of forced us to relax and do nothing.

My mom and Mrs. Levins were here with us on this trip. It was a mixture of some sun and some rain, some shopping, and lots of eating! Raw oysters! yum. Samantha was not the fondest of the sand at first but don't you worry...she'll be a rockstar by next summer. She only was able to spend probably 3 short hours on the beach!

We had a great fall and an awesome first Halloween. Our little strawberry trick or treated in Seaside (well, us adults got our candy fix!) She looked so cute and the weather was awesome.

To report all that is new....
Samantha is crawling all over the place. She's starting to pull to stand and loves to walk with a little help! She eats anything and everything. Some of her favorites are avocado, cheese, prunes, nutri-grain bars, puffs (thank god for puffs!).... today she ate mushrooms, tomatoes, and roasted red peppers... she ate fish on our beach trip... there's really nothing she doesn't like.

only challenge i've been stressing about is that she won't drink formula. if anyone can help me in this area, let me know. it's been worrysome for me. She pushes it away and refuses. Stinker.

She talks up a storm although no real words yet. We think she says "Bailey" as Bailey and her are best friends right now, esp since she likes to feed Bailey her food from the high chair.

Nick and I are doing well. Our new babysitter is awesome so that has been a relief. i've been working a bunch but honestly, i love what i do, so it's not really work for me. nick has been travelling on and off, but not too bad thankfully.

Here are some recent pics. I know there's so much more to report, although i have to go pack and get ready to head back to Atl tomorrow. Oh sadness...

Until next time....
Kristi

Almost 9 months...

Wow! It's is amazing how fast time flies! Samantha will be 9 months old on the 31st and she's just growing so big and doing so many new things each day. She continues to be a very sweet girl, and her personality is really starting to show through. She's definitely like me, wants what she wants, gets mad when she doesn't get her way, and loves to be around people and talking. She is so funny, dancing to music, waving, and babbling all the time. She rolls all around and definitely gets what she wants. In this past week, she has started to combat crawl and loves kicking the ball all over the place. She moves her feet like a pinball flipper! It's so funny.

A house divided... Sam's on my side!

Dave and Gwen with Sammers

I'm taking this from some of my friend's blogs, but here are some Samantha facts:

loves Puffs and finger feeds herself.

loves water and drinks through a straw!

Loves music and dancing - thinks my singing is great! (glad someone does!)

Weighs about 20 lbs.

Loves being in her stroller

Loves looking at herself in mirrors or any reflective surface! She's so vain.

Loves almost all food - still on pureed food since she has no teeth. HATES yogurt. I keep trying, but she gags and shakes. it's funny too.

Started with a new babysitter today - Sarah. Excited to have her here after several babysitting fiascos.

Loves the computer and pressing buttons. She tends to hang up on people when we try to Skype.

Has been on 12 plane rides! ashame she's a lap sitter or she'd be medallion status.

Loves getting her picture taken and smiles at the camera

That's about it for now. We'll try to be better at posting more often. Life gets the best of us!

Nana with Samantha

Thanks dad!

What a long week. We're finally home in GA and trying to regain some sort of normalcy. This whole experience has been crazy, trying, sad, and just shocking. It was amazing to all of us how many people came to celebrate his life. Thank you all so much for all the love and support. It kept us going through all of the hard times this week.

I didn't get up and say anything at the memorial service because I knew I wouldn't be able to get through it. So here's what i would have said had my emotions held out at the service.

Since my dad's no longer here to pass along all of his insight, I wanted to share with you some things he taught me so you can, too, feel enlightened and a little bit smarter. I can't say I followed all his tips, but they always made sense.

• Always wear comfortable shoes and have several pairs to air them out between wears.
• In hockey, when one team goes on a power play and the other skates short-handed, there is not really a man with short hands. (yes, I was young and naive)
  
• Ice cream tastes better eaten from the carton with a fork.
• Never take a bath or shower in a lightening storm. You could get struck!
• Never turn your wheel while waiting to make a turn - keep your wheel straight so if someone rear-ends you, you won't go flying into traffic.
• Always label a pair of socks with the same letter or number so when you do your laundry you can easily match up socks and can throw out an old pair together.
• Wings should be eaten with only one hand so there's always a clean hand for your beer.
• A favorite quote of his "those who mind don't matter, and those who matter don't mind"
• Peanut M&Ms should be a staple food.
• Hot water unclogs any clogged toilet.
• Peanut butter paired with many foods, makes them better (dates, Oreos, brownies)
• Hand held poker is the best game to play in the tree stand while hunting.
• In Suduko, always go across first, then down, then back across. You'll win every time.
• Always stop by the bathroom before you choose a machine at the casino so you don't have to leave a "hot" machine.
  

If only there was more time to learn more wisdom and insight. I will put that into my mom's hands now. Dad, I love you, will never forget you, and will keep you always in my heart.

Kristi

Donations

Thanks to everyone who has asked....
if you would like to do something in lieu of flowers, my father always supported the cause
Doctors Without Borders
www.doctorswithoutborders.org

By phone:
Call our toll-free number at 1-888-392-0392 begin_of_the_skype_highlighting 1-888-392-0392 end_of_the_skype_highlighting
24 hours a day, 7 days a week

By mail:
Doctors Without Borders USA
PO Box 5030
Hagerstown, MD 21741

We appreciate all of your thoughts.

Kristi

An amazing man, never to be forgotten

I think most of you know the news by now, but my dad passed away this morning around 1am. It has been a crazy rollercoaster of ups and downs and finally, after pneumonia attacked his lungs, his body gave up. We knew he didn't want to live like that anymore, he made that perfectly clear. But none of us were ready to say goodbye quite yet. We are having an autopsy done so we'll have some closure and hopefully know what really happened.

it happened very suddenly - nick, me and Samantha were driving to Florida for our yearly vacation (one that my parents treated us and was supposed to be the whole family, and couldn't come). My dad had been stable so we were going to aim for some R & R and take it one day at a time to see how he was doing. We got a call 3 hrs into our trip that he stopped breathing on his own, was on a respirator, and we needed to get home. We drove back to the airport, repacked, handed bailey off to great friends lauren and Kyle and boarded a plane. Samantha must have sensed our tension as she didn't sleep one wink!

upon arrival, we learned that my dad was staying alive, waiting for me to see him. nick and I arrived at his bedside, with him on a respirator and lots of IV fluids to keep him comfortable. I assured him it was okay to let go. All of his organs were failing and he couldn't do it anymore. My mom's friend Lynda sat by his bedside the entire time and he finally let go early in the morning. It was so painful to watch. We know he's in a better place free of doctors, needle sticks, IVs, and poor medical care.

There has been an outpouring of people who have called, emailed, and facebooked. it's unbelievable all the people who care. I knew what an amazing man my father was and see now how much he truly impacted other people. My dad was a genuine man who always put others first, always had a story to share, a smile on his face, and a word of wisdom to share. He'd write things in his black book to remember the little things that would make a person's day. He was an inspiring father and husband to my mom, a great travel companion, and a loving grandpop to his only granddaughter, Samantha. He loved his family more than life.

There's so much more to say, but we are all so sleep deprived that my pillow is calling. We've had vistors all day helping us get through these hard times. We have enough food to keep our bellys full for a few days!

my mom's ok at this moment... she's still in funeral planning mode and i don't think it's quite hit any of us for real.

We're having a memorial service on Thursday -
10-11 visitation
11-12 memorial service
These will be held at Prince of Peace Lutheran Church
61 E Route 70
Marlton, NJ 08053-1749

After, we will have a luncheon at Marco's at Indian Spring Country Club at
115 South Elmwood Rd., Marlton, NJ 08053

Thanks for everyone's prayers and well wishes. We know he heard them all and knows how much he will be missed.

We love you dad and will never forget you.

Kristi

when it rains, it pours

I wish I had better news to report. I think a black cloud has been looming over the world in general in 2010. When i tell people about my dad, it seems like everyone has a story of something bad happening in their family. Whether it be cancer, miscarriages, premature births, heart attack, or whatever else bad there is, , many people seem to be struggling to get through some rough times. Depressing. What is happening?

So, I have bad news once again. My dad was in Marlton Rehab, doing well. Of course after 2 days off IV steroids, he began to go downhill once again. His body can only improve with IV steroids. No one seems to know why. So, he was on his way to discharge despite his improvement followed by a downward spiral.... when he spiked a fever! Of course, right? so fortunately the ER is right next to the rehab hospital. He was whisked away and admitted to the ICU at Virtua with.... PNEUMONIA!!!! seriously? yes, he must have caught it somehow with his already compromised immune system. He's been completely wiped out on lots of IV antibiotics and hopefully today will be a better day. They also started him on IV steroids again, so we may see change in his mental state for the better today too.

I'm in GA but Dave is home with my mom in NJ. The plan of action is to have him transported to Mass General when he's stable. We're over Trenton as they have no idea what to do next and Mass Gen is ranked the #2 hospital for neuro. Johns Hopkins is #1, but since Dave lives so close , my mom will have someone nearby and somewhere to stay. (sorry Gwen - have lots of wine on hand! Ha!) Not sure when, but hopefully sooner than later. We are hoping for them to do a brain biopsy if they can't figure it out with his previous tests.

My mom's been laying low with phone calls and such as every time she repeats the story it's harder and harder. She's an emotional wreck as expected. The doctor said they don't know if my dad will ever get back to normal, but i don't believe that. We're too much of a fighting family to give up that easily! and that stubborn Italian in my dad.. not sure if that is for the better or worse.

Please keep us in your prayers and I'll try my best to update more regularly. My mom needs to get out and be with people to keep her mind off of my dad at night, so any invitation out is appreciated and helpful for me to know she's in good hands as I can't be there with her. Martinis are always welcome, as is conversation aside from the topic of my dad's health. Thanks to everyone who has already reached out. It means the world to us.

kristi

Rocking out at Marlton Rehab

This picture is when we snuck Samantha into the hospital. The nurses let us bring her up a back elevator and slip into the room. She made his day!

Sorry for the delay in posting.. time got away from me! My dad was discharged to Marlton Rehab on Tuesday and has been doing well there. He has one more day of IV steroids and will then be put on a higher dose of oral steroids. They are going to keep him on that dose for awhile before weaning him. the docs are also going to do a brain biopsy in mid September just to make sure they're on the right track still. I'm not sure when a repeat MRI will be. They're going to give it some time, too, to see if the plasmapheresis worked.

At rehab, he's getting OT, PT and speech. Hopefully he'll be out of there by mid next week and then he'll be off to FLORIDA!!! Whoo hoo! It's looking promising right now that we'll all be a family in Santa Rosa Beach to celebrate my big 32nd birthday, Samantha's 8 month birthday, and a happy family together hopefully in good health.

He'd love visitors at Marlton, so if you're in the area, stop on by. He still has some frustration with in depth conversation and word finding, but it's improving every day. Just come with some patience!

My babysitter sent me this picture when I was away. What a great smile! And no more Ms. Scherree.... oh the story there. Ms. Whitney is watching Sam until mid Sept when Ms. Sarah will come on permanently.

Thanks for all your phone calls and emails!

Kristi

Wow... unbelievable positive change today!

Okay, you all are going to think we're crazy when you see these pictures! it's unbelievable how different my dad is today. He's carrying on conversation, walking down the hallway, going up and down small steps, feeding himself, and is so much more alert, awake and aware. It's so joyous!

It's the IV steroids at work. Unfortunately, they can't keep him on these so they'll probably still do the bioposy. We'll know more today when the doctor comes in.

Enjoy these photos. We sure are happy! I have some videos but they aren't uploading like I want them to. He went from not even being able to walk to being up.

To hell and back....

I hope that someday very soon I will be able to have some great news to report... unfortunately, that day is not today.

I'm back in NJ visiting my mom and dad. I was planning to come on Friday but after talking to dad on Tuesday, I quickly changed that plan and flew home first that I could on Wed. He was very confused and had a very hard time talking to me. Despite my mom telling me, i guess I had to hear it for myself. Wow.

So he's undergoing plasmapheresis which exhausts his system but we're hoping will help in the long run. there's no way to tell. My mom and i have been spending the days at the hospital with my dad where he can hardly walk and hardly talk anymore. It's so sad and depressing for us, but so incredibly frustrating for him. He understands what we're saying but cant put the words together to tell us what he wants. His lip quivers and i think he's going to cry, but instead, he curses. He's so upset and has asked when his brain will get better. It is absolutely heartbreaking.

they finally started him back on IV steroids last night. The reason they're so hesitant to keep him on the steroids is that they deplete his immune system so much and paired with the plasmapheresis, his immune system is already compromised! But it seems to be the only thing that works to help him get a little better, so they went with it. He was a little better today than yesterday which was reassuring, but not significant enough.

the most upsetting part of our night came around 830 this evening. They repeated his MRI this morning and this evening the results came back that there are more new lesions! This is unbelievable! How can there be more? It's supposed to be getting better?

the doctor is completely dumbfounded... this is not like any other case seen and no one seems to know what is going on. The doctor said he is going to consult with another doctor and get her opinion to see if there's anything missing. Also, he recommended a brain biopsy to test the lesions. Of course, all of this is so risky with his already compromised immune system, but what other choices do we have?

I'm going to extend my trip and Dave gets home from Belgium Sunday. He has no idea any of this has happened. nick is graciously flying Samantha here tomorrow by himself. he's so great! and then i will stay until we have a better idea as to what is happening.

I will try my best to keep the blog updated but it's sometimes hard after a day at the hospital. My brain's drained!

Keep us in your thoughts and bear with my mom.... she sometimes can't tell the story over and over and doesn't always return calls immediately! It's too emotional for all of us!

Kristi

Here are some great pics that make me smile:

Samantha lounging around..... this is the life.


My babysitter sent this to me while I was here... I light up when i see her smile.

long time...

Hey everyone! I am sorry it's been so long since the last post. That's what happens when you juggle a little too much. I am writing a quick note to update you on the status of my father and then will make a Samantha 7 month update when i'm on the computer with all the pictures!

Ok... this has been the worst rollercoaster ride we've ever been on and it continues to thrash us all over the place. To summarize a few weeks of hell, my dad's back in the hospital in Trenton... he was doing fairly well at home, and seemed to be making some progress in the right direction. However, any time they tried to reduce the steroids to work towards weaning, he would lose everything he had gained and would have to go back on the higher dose. they repeated the MRI two fridays ago and learned that the spots on his brain have NOT gotten smaller or gone away. So.... it's seeming like he's suffering an auto-immune disease where his body is fighting itself and is not getting better.
They readmitted him to the hospital to undergo plasmapheresis www.mdausa.org/publications/fa-plasmaph.html, pretty much cleaning his blood and putting clean blood into his body. it's a 5 series process, every other day, so he's back in for a minimum of 10 days. He went back in on thursday i think. well....

since he's been in the hospital he's completely gone downhill. He's having a hard time with everything! My mom's a basket case and it seems like no one knows what is going on.

i'm going to head home Thursday to be with my mom and dad.. she needs a break from the hospital trip and needs someone to drink wine with i guess! :) i'm going to leave Samantha with nick again as he did such a great job last time.

Please keep us in your thoughts. It's been the craziest last 2 months and i just hope my dad can make it on our beach vacation at the end of the month so we can all be together as a family. Keep your fingers crossed!

Kristi

6 months plus! How time flies

Wow... Samantha is 6 1/2 months old. At her 6 month checkup, she weighed in at a healthy 17 lb, 5 oz and 24 inches long. She's growing great and the NP was thrilled! She's eating more solid foods now and loving it! She's still a very happy baby and is talking all the time, or we should probably call it "yelling". Here's Sam and Nick in deep conversation.

Here's Samantha and Uncle Jack.. she loved him!

Samantha loves to roll all over the place and is starting to creep forward a bit. She got a new swing for the patio and loves that too, although it's so darn hot out that time in the swing has been limited. Here's video of her first time in her new swing!

Sam also loves all her toys, although a lot goes into her mouth. She's so interested in anything we're doing and tries to grab at the computer, cell phone, food, or anything someone else has. She's very nosy like her mom. We've had a heat wave here so we haven't been outside much or to the pool, but maybe it'll get cooler soon and we can venture out for more walks.

Nick's family (Dad, Theresa, and Jack) visited the week of the 4th. We had a blast with them and I tell you, they're handy to have around! Scott, Jack, and Nick fixed everything that needed to be fixed and more! And Scott "Grandpa" made Samantha an amazing bookshelf. I saw it in the Land of Nod catalog and have been wanting it for awhile. Scott looked at it and designed it by himself from good solid oak! It looks so good and matches her furniture perfectly!

We didn't do too much for the week - laid pretty low. Theresa "Grammy" was a huge help while I was at work, which I have been doing more than I'd like to lately with the business being so busy. Thankfully, Samantha is such a versitile kid and is happy with most people as long as they are giving her attention. Not sure when or if the seperation anxiety will kick in. Everyone couldn't believe how good she is and how little she cried. We're so fortunate.

Ms. Scherree (our babysitter) has been wonderful and Sam still loves her, but she got a break while the fam was here. I'll have to post a pic of Sam and Ms. Scherree soon!

On a side note, my dad is home from the hospital (once again!) Let's home there is no return back there for a long time. He's so much better now. He can't believe it's July 16th as he has no recollection of almost a month of his life. Not sure what will come back, but hopefully not the bad memories of the hospital! Let's hope he's back to 100% soon. It's night and day from before. I'm heading home to NJ at the end of next week to visit and bring Samantha to brighten his day!

More to come soon...

Kristi

A rollercoaster of ups and downs....

Well, just when I report good news, I'm back to reporting some bad news. My dad's back in the ICU as we speak. He started going downhill midweek last week and got even worse than he was before this all happened! It was very upsetting, shocking, and confusing to all of us. Finally, Saturday, my mom and Dave brought him back to Trenton to the hospital where he was very agitated, confused, and angry about being there. They had to sedate him and calm him down, but immediately began with his steroid treatment.

My mom read an article in her medical magazine that some people need to be weaned off steroids instead of stopping after a 5 day course.... these people, if not weaned, can regress to worse than their previous condition. Well, this explained my dad!

After 24 hrs on a steroid, he went from being totally out of it to being able to have a conversation again! He also read the newspaper today for the 1st time in forever! He still has a 24 hr aide by his bedside, but things are looking up again. Let's hope it stays this way.

Not sure what the plan of action will be at this point.... he'll probably go back to acute rehab at some point. They redid some tests today and are re-doing the spinal tap just to be sure he's ok.

David went home today and i'm playing it by ear as to when i'll head back to NJ after I can get a feel as to what my mom needs.

Keep your fingers crossed that this rollercoaster goes up.... once more!

Today was my parents 36 year anniversary! Although it wasn't celebrated as wished, at least we can celebrate that my dad is doing better (once again) and he remembered the day!

Happy anniversary Mom and Dad!

Kristi

Dad's at home

I wanted to post a quick update on my dad....
he went home from the rehab hospital on Saturday. My mom said by far he was the "healthiest" person at Marlton Rehab. He's getting by. He continues to try to figure out what exactly happened and remembers NONE of the whole incident. His first recollection is about last Saturday, as he says he remembers me and my brother in town but hardly.

My mom is working with him at home and trying to get him to do the things he was so good at, the firsts being the remote control and email. These things are hard for him to grasp and process. I keep reminding myself and my mom that it's only been a week, but today, my dad asked my mom when he will get better.

It's heartbreaking but we know to take it day by day. My parents decided to keep their trip to GA at the end of the month to come visit us, so that will be nice for us to see him and him see Samantha. She always brings a smile to his face.

Please call or visit if you'd like. I feel the more he is challenged, the more his brain will begin to work and hopefully remember. Just know that he's very tired by the evening, so keep that in mind.

I'll be sure to post about Samantha and her 6 month birthday soon! Heading to bed. The mean boss that I am kept the office open tomorrow so I am too, going in to work.

Happy 4th!

Kristi

VOTE FOR SAMANTHA!

My mom entered Samantha into a "beautiful baby" contest and we need your votes! You can vote once a day per email address.. pass it on to anyone you know. Here's the link. If she wins this, she moves onto a national contest and can win $5000! If for some reason the link doesn't go to her picture, the email address it's under is kestes9@gmail.com - you can search that way.

http://wphl.tribunepromotions.com/babies/tip_bb_wphl,0,4123676.ugcphotogallery?index=80223

thanks for your vote!
kristi

Continues to make progress...

What a week! If I could just stay in bed....

sorry for the blogging delay.. i'm sure everyone has been waiting for a posting and i have been trying to get back into my daily routine back home.

My dad has been doing better and better each day. They started him on a steroid on sunday night and by monday morning, he seemed a little more with it and slightly better. Today, however, he was so much better! I was able to talk with him on the phone. He figured out how to answer the phone, first off, which is huge. Then he had a conversation with me with full sentences. He still was grasping for some words, but what a difference! I said, "dad, I have to quiz you again like i do every day.... do you know your grand-daughter's name?" Before this, he could never remember her name. Today he said "I remember Kristi, it's Samantha!" Well, i started crying, he started crying and it was such a happy moment! I think he is finally realizing what is going on and it's hitting him hard emotionally.

David left to go home on Monday evening, so my mom is by herself. It is hard for us, but she knows we have work and have our families at home. She seems to be doing better with each day too.

They moved my dad from ICU to a regular room and he will be discharged tonight to Marlton Rehab for acute rehab services to include OT, PT, and Speech. He'll get all the therapies each day and will stay until he's safe to go home. We hope that he makes quick progress and that each day has drastic improvements. So anyone who wants to visit, it's close to home!

Here's a link to the place he's going. Look at that, i figured out how to highlight a link!
http://www.marltonrehab.com/Inpatient/index.html

I personally feel that the more he talks to familiar people and reminisce stories and all, the more that will come back to him.

I think well wishes and prayers have helped, so keep them coming.

As for other news, Samantha will be 6 months old on Thursday.. it's crazy how fast time has flown. She's so much fun now and is constantly laughing, talking, and moving. She kicks her legs all the time, is sitting by herself (with padding around her) is rolling all over the place and is starting to bring her knees in... not sure how long before she crawls!

We started her on rice cereal 2 weeks ago. She LOVES it! she was all into our food and I knew it was time. I go to the doctor this Friday so i'll be sure to update her stats.

She loves her cereal!


Sam's First pretzelmore to come soon!

Kristi

AN ANSWER!!!

We are so excited that the doctors have figured out what has happened.... and there is a cure! my dad had a sinus infection about a month ago and was on a sulfa drug.. as you see on the website below, that could have been the cause of it as well as the overall sinus infection.

the diagnosis is acute disseminated encephalomyelitis. the website describes it all!

www.adem.org

Dad is so much better today! he's laughing and talking so much more. Some thoughts are hard still, but it's like night and day.

They will start him on steroids today and could be a few days or weeks, but the doctors seem to think he'll be back to normal in no time. We're so thankful and are just keeping our fingers crossed!

Kristi

Each day gets a little better...

I asked him to smile, here's what I got! At least he's off most of the attachments he was on just Thursday.


My dad's spinal tap came back totally normal. So now the doctors are going to continue to run tests and they assure us they'll get to the bottom of this. The next test ordered is an MRI of his lumbar and cervical region to look for inflammation there. Yesterday the ICU had 5 new admissions, so the floor was absolutely insane and they weren't able to run tests. I think the docs are all meeting to look at the treatment plan to see what they feel will be the best sequence of events.

Dad was happier and much more alert yesterday. The PT got him up and out of bed. He still has a 24 hr aide as apparently he's been trying to climb out of bed from the sides and over the top. We feel that he is less confused and seems to understand more. He's also talking more, still the words are hard to grasp.

We have a list of questions for the doctor today and will hopefully know more by the end of the day. I told my mom and Dave to bring stuff and start to quiz him, have him read, have him carry on a conversation with turntaking, and so forth to get his brain working. That's the OT in me. Ashame i don't know much else about this area.

I'm heading back home today and Dave will be here. I know he's in good care and my mom will still have company.

More to come later....
Kristi

Some good news and hopefully some answers to come...

Hey everyone..

Well to add to the chaos of our lives, Berlin got hit with some serious storms yesterday and we have NO power at my mom and dad's house.... so we lived by candlelight last night, had to empty the freezers into coolers, and are trying to survive the heat without AC. So i'm finally getting to blog this morning at the hospital.. fortunately they have wireless network.

My dad looks so much better this morning. They took off his EEG and took out his oxygen so his head isn't taped anymore and his nose isn't itchy! less things for him to pull at.

Late yesterday afternoon, the doctor met with us again and gave us some good news...

they did 3 very specialized tests to look at his heart and all his arteries and veins from his middle up. These are tests they never did at Jefferson... they found completely clear everything that indicates NO STROKE! No cardiac issues at all. This is huge news. So...

The doctor really feels this is a demyelination process (i guess can be described as the sheath around his axons in his brain are affected some way). How i wish i did better in my neuro classes! This is ususally caused by an infection of some sort. The more in depth tests from his lumbar puncture are supposed to come back today as it took a few days to get from the lab. The doctor thinks they'll get here today at which point he can be treated with steroids, antibiotics, or other medication and have a good prognosis! this will help shrink and eliminate the masses in his brain that are pressing on this centers of his brain affecting his speech and memory.

Let's hope we get some answers soon, but he's looking so much better and we're trying to explain to him that this is a temporary thing as i don't think he understands and is frustrated that he doesn't want to live like this. He has an aide by his bed 24 hrs a day to make sure he is okay and doesn't pull on his tubes. Also, they said he's been very restless and has even tried to get out of bed which is not good as he's connected to too many tubes and is at a fall risk.

He did Skype with Samantha and Nick yesterday which brought a smile to his face. I hope we're on the upswing!

I'm heading back to GA on Saturday and Dave's staying until he's not needed anymore. His boss has been very understanding fortunately.

Thanks for all the notes and phone calls. It's nice to know so many people care about him.

Kristi