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