Free at Last!!!

We went this morning and did a driver evaluation/assessment for Frank...he passed with flying colors...the instructor ALMOST seemed a little guilt ridden taking our money, since Frank had NO problem with driving. So he is free to drive himself around.

We're picking up his truck tomorrow night since we're meeting with the real estate agent about selling the apartment. There is a whole sordid story behind this...if you know the back story and want the details, email me...otherwise, pray that we can sell quickly and get this albatross off our backs!!!

The weekend was fun...we went pumpking picking yesterday with Kaitlynn...she had a blast!! She patted and kissed lots of pumpkins, ate a little dirt and a LOT of corn. The farm we went to had a little of everything...we picked our pumpkins out and then went to see the baby animals (Kaitlynn was more interested in the "DOH! (dog)" that someone brought with them)...sidebar - who brings their dog pumpkin picking with them??? I digress...

There was a concession stand where they were serving Super Yummy Roasted Corn...Frank and I each purchased an ear, and when we sat to enjoy them, I offered Kaitlynn some. She didn't seem interested, so I popped off a kernel or two and placed them in her mouth...then she was like a little bird with her mouth open awaiting more. After we'd pretty much finished, I was about to put the cobs in the trash. There was a little left on mine, but I was full...WELL...Miss Kaitlynn started to throw a fit, reaching for the cob and crying out. So I gave it to her. And for the next 10 minutes, I think pretty much anything could have occurred around her and she would have neither noticed nor cared!!! We had to bribe it away from her to get her back into the car....so I guess she likes her corn!!!

Frank did really well maneuvering over the hills and bumps of the field. I was impressed!!! He was tired by the end of the day, but that is to be expected. And the fatigue seemed a little more tolerable when we returned home and he was treated to an evening of "Kaity kisses" (Mommy got belly raspberries instead of kisses - those were reserved special for Daddy last night)...Sometimes she just makes your heart melt!!!

So that's our story...Frank's first rehab visit is Thursday...then probably 3 times a week after that...we'll keep you posted on that progress!!

Hope all is well!!

Home Sweet Home...sort of

Well, Frank is home....home is now Mom and Dad's, but it's home. We're very grateful to have such a wonderfully supportive family and a place to live!

Frank doesn't start his outpatient rehab until Thursday (that is as soon as they could get him in)...so we ARE the rehab right now...walks here and there and exercises. Frank wants to test his driving skills to gain a little independence back as well...the Dr.'s didn't say he couldn't drive, only that they reccomended he get an evaluation done first...so we'll see...

So that is where we are. For those of you who have our cell phones, please use those to contact us, or reach us at Mom and Dad's house . You can send mail to our apartment address still, as we're picking it up a few times a week and going to start forwarding soon...you can also use Mom and Dad's address.

And Kaitlynn is feeling better too...just in time for her right molar to start popping through!!

Hoping all is well with everyone!!

The Big Day!!!

Funny, we used the same term for our wedding day...then the birth of Kaitlynn...now, it's HOMECOMING for Frank!!!!!

Frank is being released from inpatient rehab tomorrow. We will be staying at Mom and Dad's and he's getting set up in the outpatient rehab facility in Riverhead, only 10 minutes from the house. It's a satellite facility for St. Charles' Hospital, so I am sure the quality of rehab will remain great! Right now they are trying to figure out scheduling, but it looks like it will be 3 days a week (I think for an hour each time, but maybe more).

We are so excited to have him HOME, and we're looking forward to a QUICK recovery! Keep your prayers coming and we'll keep updating!!! Here's hoping Frank is back on his feet and back to work in the blink of an eye!!

So it's Monday again - I'm not a big fan....

The weekend was pretty good. Linda has been helping me get our apartment packed up (we're going to be living with Mom and Dad and trying to sell it)...I got to have dinner and some quiet time with Frank on Sunday evening...Kaitlynn is feeling better (though still a bit cranky and clingy)....so we're on the mend.

We're progessing on all the mountains of paperwork...Frank is checking with his PT people/Doctor regarding the specifics of his supposed release on Thursday - Outpatient rehab schedule, restrictions on driving, location of rehab....so we're waiting to get all these answers.

But we're doing okay...hanging in there!!

For those keeping up with us, please keep my cousin's little girl Juliette in your prayers as well...she is in ICU with a brain anyeurism...the doctors have said her prognosis is good, but as I am fully aware the power of prayer can do amazing things...so if you don't mind adding Juliette, we'd appreciate it...

It's times like these...

That I am thankful someone discovered caffeine!!!!

Frank is doing well...we're a little nervous, as they have said they are planning to release him on the 23rd....We both assumed he'd walk out of rehab on his own, and we're not sure where he will be after only another 5 days of therapy...So we'll see.

We finally were able to spend some time together Tuesday night...Mom put Kaitlynn to bed for me...it was really the first time we had to just "be" since we got back...usually I am chasing the baby around the hospital! So that was nice...we watched a little bit of Boston being beat up by Tampa Bay (Go RAYS!!!!!) Of course after I left, I had to go to the grocery store...so by the time I got back to the house it was almost 11pm...

That wouldn't have been so bad, except Kaitlynn woke up at about 12am and was having a TERRIBLE night - we were up until 2, during which time she spiked a fever, threw up all over everything and was just miserable. Finally I got her back to sleep and as soon as I put her in the crib, she woke up. So we laid down together on the bed...she woke up at 4 wanting another bottle...finally around 5:15 I got her back into bed....and then we were up for the day at 7am...UGH!!!

Last night was a little better - she was only up from 1am to 3am...then again at 6:30...her fever appears a little better, and she only threw up at dinner last night, instead of in the middle of the night...I'm calling the Doctor today...but I think it's her teeth...those molars are painful!!

Well, I'll update later after I talk to / see Frank, but hope everyone is well!

Emerging from the fog

For those of you concerned, thank you for your concern...we're all okay - just haven't had a chance to update in the last few days.

We're starting to emerge from the fog and find our way to some sort of "normal." I am back to work today. Kaitlynn is with Mom (though she was NOT happy that I was leaving), Frank is into his rehab routine. Kaitlynn and I stayed at Mom and Dad's last night...we'll probably be there for the week and then head to the apartment for the weekend (or at least for the day on Saturday). We're trying to get some work done there so we can fix it up and get it on the market (terrible timing, I know).

Frank's doing really well...the PT and OT people are really impressed with his progress. He has pretty much regained his bladder and bowel function...though it does take him a while to go. He is able to get himself in and out of bed and on and off the wheelchair (no more bed pans or catheters!!! YEA!!!!) They started using a walker yesterday - but not on his own. He can make the walking motion, but they're supporting his knees, since he can't bear weight on them yet. But they've all said he should be walking again 'soon' and they are optimistic that he might not even need to be in the inpatient rehab for too long.

So that's where we are...Kaitlynn's one molar has started to break through...just in time for the other side to start coming in...so she's a pretty cranky baby...but honestly, she's hanging pretty tough!! She likes being at Mom and Dad's and having both cats to play with!! Now if only Mommy could get her to eat!!!

Thank you all again for your thoughts and prayers - we appreciate them all!!!!!

Rehab Day One

So, today was the first day of rehab for Frank. He said they didn't do too much, but they had him standing for a while and taking steps. He isn't bearing weight on his legs, so right now it's just the motion of walking...once they build up the strength, then they'll start to transfer weight from the upper body to the legs...

And Frank said he was in the wheelchair for several hours - wheeling himself all around...and one of the PT's took him outside...and best of all....he got a SHOWER today!!!!So he's feeling much better!!

They took out the catheter - we're waiting to see if he can go on his own...if not, they'll put it back in....

so that's it - we stopped up this evening and Kaitlynn played Peek-a-boo with Daddy and took a "ride" in his wheelchair...

That's about it for today - hope everyone's well!

I Love New York!!!!

WE ARE HOME!!!!!!

The flight was fantastic. The only problem is now Frank and I want to fly first class ALWAYS!!! The crew at Continental was phenomenal and we truly appreciate their help. The flight was breeze, and Frank did great.

Thanks need to be said to my family in Texas - Ken, Kathy, Kevin, Melanie, Kelley, Dustin, Keith and Lindsay...without them, we would have been lost. Their love and support helped us through. They provided Kaitlynn and I (and My Mom) a place to stay, a car to get to and from the hospital, iPod chargers, laptops, Nintendo DS, and visits to Frank (among lots of other things). Thanks especially to Uncle Ken for helping get the Continental flight arranged and to Dustin for escorting / helping us through the terminal. We love you all and will be eternally grateful!!

Thank you to my Mother for joining me in TX to help with Kaitlynn and for bringing her back up yesterday. Your love and strength means more than you'll ever know...and I hope you enjoy your weekend away! To my Father - Thank you for having strings to pull and for pulling them...thank you for getting us to the hospital and for meeting us at the airport...Thank you for your strength, your guidance and your love. Thank you to Frank's Mother and Father, Linda and Frank...thank you for being a rock of faith and love and helping us get here through your prayers. Thank you for meeting us at the hospital and bringing lots of goodies (and dinner!) And thanks to Linda and Amanda for their fantastic job of cleaning the house...it was such a wonderful surprise (and perhaps the first time Frankie's kept a secret from me!!!) We are blessed with a wonderful family, and I don't know where we would be without all of you!

To all of our friends and family, thank you for your love and support and prayers. Please keep them coming as we have a long road ahead while Frank is in rehab. We all have faith that he will make a full recovery, but I have never believed more in the power of prayer...so keep it up!

Frank is now settled into his rehab in St. Charles Hospital in Port Jefferson NY. If you want info on his room / phone number, please email me. We got in about 7:30 tonight, so he'll meet the Doctor and the rest of the staff tomorrow...but so far, so good. He even got a round of applause when he arrived!!! (They've been ready for us since last week!)

That's all for now - I am going to try to get some rest in my too quiet house (no Frank, no cat, no baby) and prepare for the days ahead...I will keep up with Frank's progress on this blog....

Good night, and God Bless you all!

We're going home!

No, the insurance company STILL didn't do their part. We've gone to Plan B - we are flying first class on a Continental flight from Houston to Newark...we leave at 11:40 tomorrow morning.

The seats allow a recline that should keep Frank comfortable...and we'll have ambulance transport on either end...

And the insurance company will certainly get my bill in the mail!!!

I spoke to the people at the facility where Frank will be in Rehab, and they are GREAT....they're waiting for us, and know we're coming tomorrow...

Please say prayers that transport/flight/etc. go well....and I'll update you all tomorrow night...

Amee

Happy Anniversary!

Today is our 2nd wedding anniversary. Not exactly how we'd plan to spend it!! Oh well, we will just have to postpone celebration for a little bit.



We're still waiting for the stinkin insurance company to approve Frank's air ambulance to get back to New York. It is just plain stupid how long it takes them to do anything....



But Frank gave me an AWESOME present this morning...he sat up on the side of the bed....then he stood, for about 3 minutes...then....he took a few steps to the side!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I am SO excited and proud of him. The PT people here were so impressed with what he's able to do!!



We took him off the anti-anxiety/mood stablizer as of yesterday morning. He wasn't feeling well on it and was really not himself at all. Today - he's much better!! And he was able to have a BM on his own (he'll probably hate me for posting that, but it's a good sign!).



So, we're ready to go to rehab...we need to get back to NY because although the facility down here is in-network, none of the doctors are, so they'd end up holding us responsible for whatever the insurance company didn't cover...we can't afford that, so we're going back to NY...but we need the insurance company to approve transport for him via air ambulance so we can get there!!

I HATE insurance companies...we are trying to find out where Frank is going for Rehab and when he can / will go... we're back and forth with the insurance company, the case managers here at the hospital and no one seems to know what is going on.

We don't have a clear answer on if the insurance company will cover air ambulance to get him back to NY...

We don't know if he can fly back to New York...

I hate insurance companies...

Sunday

Well, apparently everyone slept okay....except Frank. He's really exhausted right now. Someone called his cell phone at 1am (which is 2am in NY where the call came from)....they came at 3 to check his vitals and at 5 to take blood...He isn't comfortable laying on his back anymore...but a little concerened about rolling over for fear of pinching the IV or the catheter....

I'm at the hospital now...we're going to have lunch together and then I'm headed back to the house. We're taking the girls to a Pumpkin patch this afternoon...and maybe to the pool after that...and I want Frank to sleep... He's still moving that leg around...in fact he can do it sitting up now. I'm working with him on some of the stretches the PT people showed me. He didn't get into the wheelchair today - he felt too tired. I'll let him go one day - but he's going to rest and then he needs to push....After all, it's Game Day!!!!!

Saturday-The power of prayer

Since Monday, I have been praying every chance I get, and asking everyone I know, and even people I don't know to pray...pray Frank recovers, pray we get back to our life....

Mom and I and Kaitlynn went to Target this morning on our way to visit Frank. I was looking for a handheld poker game for him...would you believe how impossible it is to find a handheld TEXAS Hold Em game in Texas???

Anyway - my phone rings and it's Frank. He says "I have something to tell you." I am looking around for a place to sit, as the somber tone of his voice has me worried. I say a quick prayer to God to ask him for strength...Frank says to me............................I MOVED MY LEFT LEG!!!

I couldn't breathe for a moment. My eyes filled with tears and I think I shouted a bit...I told him we'd be there soon...and I tearfully relayed this information to my Mom...she cried too.

Frank put on his "Show" for us when we got there...he said when the PT people came to get him out of the wheelchair, they slid him to the bed, he got his right leg on the bed, and then lifted his left leg onto the bed. He laid flat and BENT HIS KNEE!!!!! I cried, again....He was tired, as one would expect. But he put on his show for everyone that came in. The regular doctor said "That's incredible" The neurologist told him that now, she could tell him he should walk again!

What a GREAT day - so overwhelmingly positive...and exhausting....I think we'll all sleep a little better tonight.

Friday

Well, more it's not this, it's not that...Dr. says it MIGHT be that Frank was exposed to West Nile Virus at some point and that trigged the Transverse Myelitis (TM)...but they still don't really know.

We're still waiting to hear from the insurance company on what they'll cover for transport. The good news - one of the facilities here in Houston is the #4 Rehab center in the country...we'll go there if we can't get back to NY. Back north, St. Charles is covered by insurance and they're 15 minutes from our place. The other is in White Plains, which is about 2 hours away...but that is a better facility, so maybe we should go there...

They did more PT today, and Frank could hold himself up on the edge of the bed. And they slid him to a wheelchair for about 1/2 hour...he can bend his right leg and lift it up off the bed - good signs say the doctors, even though they still can't say anything concrete.

We brought Kaitlynn in to see Frank today - that seemed to lift his spirits a bit...she of course was more interested in running all over the place. Note to self - must keep Frank's door shut while Kaitlynn is here, or she will attempt to visit everyone else in the hospital!

Thursday...Good News...kind of

It is NOT MS...that was superb news! And we finally have a diagnosis...Transverse Myelitis. Yes, that's what we asked too...what the heck is that?!?!?

So we research...and we grow increasingly concerned. The internet is a fantastic resource, but it can be a scary scary place...Different websites offer different descriptions / prognosis, but no concrete answers on where to go from here...

The doctors can't tell us any prognosis...they can't say if Frank will walk again...or when..or how long he'll need to be in Rehab...or anything, really...

They started PT today- they sat Frank on the edge of the bed...he almost fell over. They tried to get him to stand up...he couldn't. He couldn't move his left leg at all still, and the right leg was too weak. It was hard - mentally AND physically...And still, no one can give us any real answers...

We know that Frank will need to be at an Inpatient facility for rehab, but we don't know how or if we can get him back to NY...if the Insurance company doesn't cover it, the cost is around $25,000...we don't have that. We know we'll get short term disability after his sick time runs out...we find out that is such a minimal amount, we now worry about how to carry our costs..

Why did this happen, what causes it, will Frank walk again, will he be able to go back to work...We're stressed, we're scared and this sucks.

Wednesday

By now, days are starting to run together...The neurologist has told us that they need to do another MRI on his head to see if they see the kind of lesions associated with MS. They did that later in the day, after I'd finally headed home...each day they would come in and tell us, well, it's not this, it's not that, but we still don't know what it IS...

They did a spinal tap yesterday too...the spinal fluid was clear, but they have to send out for the results...which will "trickle in" over the next few days...

Still no movement in the left leg...the right leg is weakened. They're going to start physical therapy tomorrow...and he'll be in rehab after that...but we don't know for how long.

Please forgive the shortened post...as I mentioned, days run together and starting this after the fact means it isn't necessarily clear what happened what day...

Mom came into town tonight. She landed at 5 and got to the house about 9...for most people the airport is only 40 minutes from the house....long story that still isn't totally clear!!

Tuesday

Tuesday morning, after showering and getting dressed, and trying to get the baby to eat breakfast, I headed to the hospital...The day was full of phone calls to I think everyone we knew...our family, our friends, people whom we needed to help us take care of something up at home. My mother decided to fly down on Wednesday to help with Kaitlynn and to support us, so we were trying to set up her flights.

My Aunt was kind enough to loan me her car, so I had driven myself to the hospital...and that is where I stayed all day....the nurses and doctors were in and out all day...they took blood, they did more tests, the Neurologist told us that they'd narrowed it down to either a virus or some sort of disease that was breaking over the myelin sheath protecting the spinal cord...it could be West Nile, it could be this it could be that...it could be MS. That was a blow...one we weren't able to really comprehend. Frank had been perfectly healthy previously....

It was a long, hard day. Everyone was tired, everyone was worried and nobody had any answers for us...

The Worst Day of Our Life - Part II

We waited what seemed like an eternity in the ER triage area. Finally, they moved us to an actual ER room at about 7am. By this point, Frank felt he needed to go to the bathroom. Well, he couldn't move his left leg at all, and they took the wheelchair after putting us in the room. We're in luck...the bathroom is right across the hall. I can't tell you how far "across the hall" can be. We wheeled Frank to the rest room on a rolling stool...he hobbled to the toilet and we reversed the process to get back. But he couldn't go to the bathroom. All that water and tea, but nothing...They finally came in and put in a catheter...


They'd taken him for xrays when we first arrived, and after the Doctor's inital visit in the ER, they took him for a CAT scan. And they took lots and lots of blood...And they still didn't know what was wrong. So they scheduled an MRI...a closed MRI. It was now probably about 3pm or so and we stil had no answers...so MRI it is....I've never had a closed MRI because I KNOW I am claustrophobic. Apparently so is Frank. He made it about an hour, and then the anxiety kicked in. They wheeled him back to his room in emergency, and it took about 1/2 hour and some Valium to calm him. Still no answers.


The Dr. came in and initally said they would HAVE to finish the MRI, or they wouldn't know what was wrong. Then he came back and said they had what they needed, and only the thoracic (middle) section was fuzzy, but they could work with it. The Dr. told us we'd see a Neurologist and an orthopedist. Still no answers.


The Neurologist came in and did a full work up on Frank. He had sensation on his left leg, though it was a bit dulled. And the right leg was getting weaker. She told us that he would be admitted at least overnight and that they would need to finish the MRI because she was concerned about his spinal cord and the region that was fuzzy. Not what we wanted to hear. But she said they'd order the MRI to be done ASAP. Still no concrete answers...

They let Frank order dinner and by about 6pm, we started asking the nurse when they were planning on doing the MRI, and she told us they were "fixin" to get him upstairs (to a room) and that the nurses from there would be handling his transport to MRI. By 7:30pm, we finally got into a room (which wasn't upstairs, but down the hall). By 9:30, they told us that they had to get a tech to "come back" to redo Frank's MRI, and that was going to take probably another hour and the test itself would take an hour. I stayed with Frank until about 10pm, when my cousin's husband Dustin came back to pick me up.

We were both exhausted, scared and totally at a loss for explanations. I had called my parents, and his parents, and we were keeping my family here updated. I came home, and the baby was already in bed. She didn't have a good night either - up and down all night. It's amazing how much they can sense your stress! I got a little bit of sleep and prepared myself for the day(s) ahead...Still, no answers.

The Worst Day of Our Life - Part I

Right as we were headed to bed, Frank mentioned that he had a little pain in his lower chest / upper abdomen. It didn't seem terribly serious, so I went about getting ready for bed, trying not to wake the baby, sleeping in the adjacent room.

When I returned from brushing my teeth, Frank was on his knees pounding on the bed. He could barely speak, was turning bright red and flailing himself all around. He said he felt like something was trying to burst out of his chest. Then the pain subsided...then it came back, worse. This continued for a few minutes and I went to wake up my cousin Kelley, who after a few minutes of seeing Frank went to get my Aunt. We thought that it might be dehydration, as we'd been on a plane the night before, out in the sun all day and Frank hadn't had a lot of water. So he drank several bottles of water and a few green teas. We were congregated in the game room, again trying to make sure the baby didn't wake up (again that is, she was already tossing and turning and crying). We sent my aunt to bed and waited to see if Frank would feel better....After a bit, Frank got up to go downstairs to the bathroom and said his legs felt weak...he went downstairs, couldn't urinate and came back up. Enter screaming baby. So I went to console her. After a while, Kelley went to bed and Frank came in to lay down, as the pain seemed to have subsided a bit. No sooner did we lay down the baby woke up AGAIN. So I sent Frank down to get a bottle. When he came back up, he said the pain was back. He handed me the bottle and went back to game room. Both the baby and I dozed off on the bed.

I woke about an hour later, hearing Frank CRAWLING through the bedroom...apparently he'd fallen asleep too. And when he woke, he couldn't move his left leg. At this point, I put the baby in the pack and play and headed down to get my Aunt and Uncle. We left for the hospital at 4 AM (CST).

September 28, 2008

We flew into Houston from NY on Saturday night. We crashed into bed shortly after arriving, and arose to the first official day of our vacation Sunday morning. The sun shone, the air was warm and we were all relaxed...Kaitlynn got to play with her cousins, we set up for the ensuing family barbeque, we welcomed a couple of friends from Austin we hadn't seen in quite some time.

Later in the afternoon, we all landed in the pool...we played, we splashed, some cannonballs were performed, and a good time was had by all. After everyone had settled down, and everything was cleaned up, we spent a little time relaxing in the hot tub before heading to bed. It was a perfect day, a perfect start to our long-awaited vacation. Little could we imagine that we would vacation no more on this trip...our lives were about to be turned upside down.

The Beginning

So, I've been meaning to set up a blog / website for quite sometime. Our vacation to Texas and the ensuing events have prompted me to do so now.

I will post our story in chronological order, starting with our first day of vacation....and I will try to update daily...