Pictures: Christmas Season

Merry Christmas everyone! We've had a great Christmas here. Ari did pretty well overall, but she has been overwhelmed be all the people and overstimulated be all the presents and activity.She's currently ready to pass out. I've got some pics from the past few weeks of all the Christmas stuff we've been doing. Also, I have a few other folders of pics I just haven't gotten around to posting. We'll start from the most recent and work back a little.

Christmas Day
Christmas Street (34th St.) in Baltimore
Kennelworth Train Garden
Ari and Lily's Christmas Program at Church
Philly Christmas

That's all for now. In the future, I'd like to start keeping this more up to date as just a blog to keep everyone up on how the family is doing in general. Hopefully Ari's major surgeries are done for quite a while and I can use this for more than just that. We'll see how often I remember to update.

Back to school.

Well, Ari goes back to school tomorrow. We have her out one more day just to make sure she's good on her feet, but she did really well over the weekend. She walked a good portion of the time we were at the mall, although she was still in some pain by the end of the day. Not bad overall though. Hopefully she'll do well tomorrow.

First full day home

Ari came home around noon yesterday (12th) and has been doing well since then. I've been stuck at work since she first got home, since I was called in from the hospital. Ari has been doing well and has been in a good mood most of the time. She's doing much better than last time. Hopefully she'll be up on her feet by the weekend. If so, there is a Chuggington event at Toys-R-Us that she'd love coming up on Saturday.

Note (2/23/2012): This call into work I got was the reason I started looking for a new job. I got a call from my new boss at the hospital while Ari was still in the bed in pain. He wanted me in the office right then. Then when I got to work (after Ari was home, I wan't leaving her at the hospital), he didn't want me leaving early for the next few weeks, even if I was needed at home. I understand that there were big problems brewing at work, but the company never seems to handle them well. While they were very understanding as a whole of my situation, this event (added to all the layoffs and program cancellations) showed me that it was definitely time to look elsewhere. I posted my resume that week.

Update

Ari is doing well overall. She's off of the IV meds and we're getting her to eat some. She's having some jolts of pain where she jumps a little and is in pain for a minute. She is doing better overall, but she still has a little to go.

Not going home tonight.

She's still working on getting off of the IV meds and eating better. The doctors want to keep her one more night. Now I just need to figure this out with work...

Getting ready for tonight

Ari will definately be in the PICU through the night. She's been awake for a while watching some of her shows. I'm staying the night as only one person can stay. I get to sleep on the chairs in the waiting room, which actually isn't as bad as it sounds. The arms come off so you can set up three chairs or so in a row to make a makeshift bed. They give you sheets as well. I don't really mind as it lets me stay close all night. The waiting area is within sight of her area in the PICU.

In the PICU

We're back with Ari in the PICU right now. She's doing as well as could be expected. She's swollen from all the fluids, which is normal. She's in and out of sleep and in a good amount of pain. They have her on some strong meds for today which they are just giving her an extra dose of now that she is awake. We'll probably be in the PICU through the night.

Out of surgery

Dr Ain just came by to tell us the surgery was done. It took a little longer than expected but they were able to get the rod replaced with extra anchors and they did the extension so it will be 6-9 months from now before she will need her next surgery, as long as there are no more problems. We can go see her in about 30-45 minutes.

Just got an update

The doctors have started the surgery as of 8:30. They'll give us updates every hour so I'll update everyone here as I hear anything.

Starting

I just took Ari back to the operating room. They put her under and are finishing up the prep for the surgery.

Round 2

Tomorrow at 5am we are heading back to Johns Hopkins for Ari's second surgery. They will be removing one of the four rods in her back and replacing it. They will also be adding some extra hardware to help keep it from coming loose again. Unfortunately this was a possible complication with all this, but Dr Ain says he has a few tricks to help when this happens. None of them are anything they would want to do first time around. I'm guessing they go for the minimal hardware approach first and add on as needed. I'll keep everyone up to date on here as things progress.

Work

Well, today was the last day of ANS. We lost our funding and they couldn't find anything to keep it going at this point. I'll be staying on to support some small leftover programs while the money hold out on them. Next week I'll be giving a training class on the software I've been writing. I'll start that on Wednesday. The class actually starts on Tuesday but Ari has her first pre-op Tuesday morning so I'll be there instead. The has her second pre-op Thursday and then surgery is Monday...

Oct 10

Ari's next round of surgery is on Oct. 10. They need to adjust the left rod and replace the bottom bolt which has come loose. We were told there was a risk of this happening. Sometime there is just too much movement early on or a list of other reasons. It's just a risk with this type of surgery.

Second Surgery

On September 9, Ari had her follow up visit with her surgeon, Dr Ain. He found that one of the screws that hold her rods to her spine had come loose. He ordered a CT scan to determine how bad it was. Ari had her scan this morning. She did wonderful during the scan. They basically had 3 ways of doing this. One was to see if she could hold still on her own. The second was to strap her to a special board and see if that could hold her well enough. The third was to put her under. She did it on her own so that went well and quickly.
After looking at the results, Dr Ain is going to have Ari back in for surgery in early October. The screw needs to be replaced and the rod adjusted. It's a fairly minor surgery especially compared to the first. We'll hear soon when the date is going to be.

Back to School

Today was Ari's first day back to school since the surgery. She was a bit conflicted at to whether or not she wanted to go. She was excited to see her friends but also probably scared since it had been over 5 weeks since she had been there for any length of time. Once she got settled in she did fairly well. She had her grumpy points but I didn't really expect anything less. It's still summer camp at school with academic classes starting on Aug 29. It was ice cream day too so that probably helped. She had some problems getting comfortable on the cot but we bought her a soft top for her to try tomorrow. Hopefully that will work better for her. Overall I'm happy and proud of her for how she did on her first day back.

Countdown

Ari is getting better by the day. She can get to a standing position now as she has something to lean on. She can pick thing up off the floor by kneeling down until her hand can reach. It's still a little sad to watch as she has to do all this without bending her back, but its good to see that she is learning how to do it all.
  Today she is home with Nancy, a woman from the church we've been going to around here. Tomorrow and Friday she'll be with Mel. Then Monday will be had first day back to school. So the countdown is at 5 days. She'll be there for three days her first week. Thursday is an activity day she's not allowed to participate in and Friday is a staff day so school is closed. We're expecting it to be a hard week mostly because we have to get her used to her schedule again. Eventually she will get back into it, but she's been on her own schedule for over a month. I think she's really getting bored though and it'll be good for her to get back to class, even if she's still a little unstable and touchy.

One more week

We've made it through another week with a lot of improvement. Aunt Lisa was here for three days to watch Ari. Ari got to play with her cousin Bobby as well. I think that was really good for her. Gave her incentive to get up and moving. Thursday was Mom-mom Wood and Friday I was home. We went to the mall for a while. Overall she's been improving. We're still working on getting from sitting to standing but I have a feeling we'll be working on that part for a while.
   One week from Monday Ari will be going back to school. That's the last week of summer camp and it's a short week so that will give her some time get back in to a schedule and used to being at school again.

Walking more

Ari's been up and walking quite a bit the past few days. We've even been to the mall. Today we went to lunch for Pop-pop Wood's birthday. She's still having trouble standing from either a sitting or laying down position. I think that will be the hardest part it teaching her to stand again with the rods in her back. Right now she's sitting up and playing with her Mickey Mouse fishing game.

Much better progress.

Ari's doing well so far today. Last night she started sitting up on her own and sitting without support, but the day overall was not so great. Today she's sitting up and standing with help.  She's also walked from the bed to the kitchen and walked around outside a little.  She's been standing to play with some of her toys. We need to work on her hair again though.

Still Better and Worse

Ari's still having good and bad days. Yesterday was really good. She was sitting up for an hour or more at a time with very little whining. Today it's 15 minutes at a time. To be fair though, this is the first day she's been completely with oxycodone. We've been dropping the dose every day. Yesterday she had a minimal amount and didn't even get every dose but she did well still. Today, she'd only had Tylenol. She is still sitting up and she wants to go to the mall, so we're going to give that a try.
Yesterday I took her over to school for an hour. She got to see the teachers and spend some time with her class. She was tired but she enjoyed it. She slept for a while after that.
We also got her bill yesterday. We've already paid our part of it before even going in for surgery. This was the bill including the part covered by insurance. It was $56,731.29.

Better and Worst

We had a little scare last night. There's a bump on Ari's back that we called the doctor about. The resident must have been busy because it took over an hour for them to get back to us. It turns out that its not unusual for you to be able to feel the rods through her back for a while. They generally fix that at the 6 month adjustment.
We tried taking Ari out for a ride in the stroller yesterday but that didn't go well. We didn't get very far before Ari was hurting too much and we turned around. That's when we found the bump.
Today, Ari's been going back and forth between grumpy and feeling better. We had her sitting up for a little while, but she's still not getting back on her feet. The doctor wants her walking on her own by Monday or we have to call and let them know. I think at this point Ari just needs to regain her confidence more than anything. She's just afraid to do too much of anything.

Sitting up

We talked to the nurse at Johns Hopkins today. She wants Ari to spend most of the day sitting up from now on. She's been sitting up for over an hour now. She finally wanted to start playing with some of the presents she got. You can see the paper plate bee she made with Mommy. She's still looking fairly miserable, but I can't say I blame her.

Back to work

This is our first day back to work. For me it'll be the first time I've been away from Ari since the surgery (other than getting meals at the hospital and getting the car when we left). My mom is home with her today. We had her up back up and walking this morning. She's still in pain, but its slowly getting better. We're going to look into getting some help from our health insurance. Someone who could help in getting her up and moving and letting us know how she is progressing. Her progress seems slow but I'm guessing that's from the hypotonia.

Pictures: Last Summer

Our summer vacations for this year are over between Ari's surgery and both of us being more than out of vacation time. I'm sure we'll get out for the occasional day trip, but for now here are some pictures of what we did last year. We went to Ari's first Frederick Keys game. We went to Dutch Wonderland with Mommom and Poppop Evans. We also went to visit Aunt Pat and Uncle Ev down in Myrtle Beach where the Frederick Keys just happened to be playing the Myrtle Beach Pelicans. All of these things are on our list of things to do next summer.

Sunday Update

Today has been better than yesterday. We sat Ari up on the sofa for a while while she watched Strawberry Shortcake. She complained for a little while but settled down and watched after a while. She the asked to play her MobiGo, which is a fairly big, children's version of something like a GameBoy. This is the first time she's actually played with that since the surgery. So far she's only played with some smaller, simpler toys such as her princess dress-up dolls and lacing toys. She also played her monkey game on my phone for a while.
We have had her up and walking once today. It went much better today. She complained but no screaming, other than when I picked her up but that was probably more because she was scared. So overall a much better day than yesterday but she still seems behind where the doctors expected her to be. My guess is she's just going to take longer because of the hypotonia.

Today's Update

Ari is eating more today. She gets hungry after getting her pain medicine. We just had her up and walking and she seemed to be in a lot of pain. She was able to walk across the living room with a good amount of screaming.  We're not really sure if it's all the pain of if she's just scared. Either was, its had to get her up and moving too often. Ari got some gifts from Aunt Emily and Uncle Barry plus gifts from Aunt Pat and Uncle Ev.
On another note, we noticed Lily's belly button was purple and Amanda took her to the doctors. They said she has an umbilical hernia. They said it usually resolve on their own, but we need to keep an eye on it.

Moving a little

With quite a bit of effort, we were able to get Ari up and walking but only while holding her by the upper arms and letting het take a lot of breaks. She went about 5 feet before she was shaking from the pain and we let her lay back down. She's doing a little better now and she's calmed back down again. After a little Tylenol and some Mickey Mouse Clubhouse she'll feel better for a while.

First day back home

We're spending our first day home resting. Ari is doing much better. She's talking normally again (she had a sore throat from the tube in her throat during surgery) and she's eating constantly. So far she's had a boal of oatmeal, 2 PB&J sandwiches and a hotdog. She's drinking her cup right now.
Soon we're going try to get her up and walking again. Hopefully it'll hurt less that yesterday.

Home

We're home now. We put an air mattress in the living room for her to sleep on. She fell asleep on the way home (after looking like she was in pain most of the way home). She's been sleeping since then. She's on a lot of restrictions right now. No bath for 10 days. No twisting or bending for 6 weeks. Limited time in the car (no more than an hour at a time) for 6 weeks. No running around for 3 months. No swimming for 1 year. The list goes on. I don't think most of them will be a problem, but some will be hard on her.
Right now were mainly focused on keeping her pain down and getting her back on her feet. We're letting her rest tonight and will try to get her to walk again tomorrow.

Going home.

Dr Ain said we can go home today. He thinks she'll do better at home. She's taken about 10 steps so far, with a good deal of pain. Most of the tubes have been taken off as well

Ari is resting right now.

She's getting a break from all the nurses and doctors. I put on Mickey Mouse Clubhouse and she fell asleep again. She has been up a lot more tonight which is good. Her face is back to normal today. It was really swolen yesterday. She's looking a lot better overall. We still need to work on getting her on her feet tomorrow which I am not looking forward to.

Moved again.

We're now in room 654B.

Moved

We've been moved down to the 6th floor. Specifically the CMSC Building room 615.  The physical therapy team is here and got her to sit up. She's still in pain, but she's letting them work with her. I think she's more scared right now actually.
One thing they're trying to do now is find a good balance for the meds so she's now sleeping as much, but she's not in too much pain.

Morning update

Ari is still in a lot of pain. She needed to have her pain meds increased during the night. She also threw up a little.  Her vitals are good so as long as she keeps getting better we'll be in a room later today.
I got a few hours sleep on the chairs in the waiting room.

Still sleeping.

Ari is still asleep but the swelling is definitely getting better and she hasn't needed an extra shot of pain killer in a while. As for me, I'm getting tired. I'm gonna try to fall asleep in her room in the isolation gown and gloves. Not sure that'll happen as those things get too warm after a while.

Night shift.

Only one parent can in the PICU overnight. Amanda is going home to get some sleep. I'm staying the night. Once Amanda is back I'll go home and get some sleep and a shower.
Ari is still generally sleeping still. She's in a lot of pain. They just upped her pain killers to see if that works better.

Slowly waking up.

She been in and out, but she has woken up and said a few words. They had her wiggle her fingers and toes to check for any nerve damage. She did those fine. She usually doesn't stay awake long as she's in too much pain. They usually give her some pain killers and she goes back to sleep.  We both went down to dinner with Amanda's dad while my parents stayed with Ari.
Since she's had MRSA twice before she's in isolation until they get the results back from her bloodwork. We have to wear a gown and gloves while in with her. Hopefully everything turns out fine with that. She will be in the PICU until tomorrow afternoon and in a regular room until around Friday.

Not awake yet.

We got to see her. She's still asleep and on oxygen. She woke up before we went in and cried about the pain so they gave her more meds and she was asleep when we got there. She's a bit swolen and got plenty of tubes coming out of her. She's doing well according to the nurse. She just needs for the anesthesia to wear off more before the oxygen can come off.

We get to see her now.

Were headed over to the PICU.

Finished.

Ari's been moved to the PICU.  The nurse said that we should get the doctor's report in about 15 minutes. The nurse said she  did well.

Update

They said they are closing up now and the doctor should be out shortly.

Screen

They have a TV in the waiting area showing the status of all the ORs. Basically showing when things start and stop. The light for Ariana's room just turned green so the surgery has started. Now its 6 hours until she's done, about 30 minutes to recover in the OR and 30 minutes in the PICU before we can see her.

In the family waiting area.

I just went back with Ari in to the OR. I was allowed to wait in there until she fell asleep. She actually fell asleep waiting to go in to the OR so that went smoothly. It got started late, but its underway now.

Now we wait.

We've talked to Dr. Ain. We're waiting to talk to anesthesia. Then I'm going back with her while they put her under. Then to the family waiting area.

Ari's dressed and ready.

Ari's dressed and had her height and weight taken. Now she want to watch Little Einsteins.

Pre-op

We're sitting in the pre-op area now. They took all of Ari's vitals except for height and weight. They're waiting for the scale.

Countdown...

Nine hours and counting until the surgery. Seven hours until we need to be at the hospital. Five and a half until we get up and start getting ready. About another hour until we've got everything ready for tonight. Ari just went to bed after having some goldfish crackers. She went right out.
We had a great weekend at the shore in Ocean City, NJ. They we went to a campground and she played at the cousins camp-out. Then swimming at the pool at pop-pop's boat. We went to Red Robin for dinner and made sure she filled up since she can't eat any more until after the surgery. She just watched Jake and the Neverland Pirates before we came up to bed.

Slight change

After realising that they needed to run another blood test before the surgery, I had to run Ari over to Hopkins. That was yesterday afternoon. Today we found out that they pushed the surgery back an hour. We need to be there at 6:30 now instead of 5:30.

More Pre-op stuff

Today was Ari's EKG and ECHO. She did pretty well with a few understandable complaints. The echo had a few point where they were pressing on her chess to get a good ultrasound view. The EKG had really sticky contacts that had to be painful to take off. That was my job. That wasn't fun. Overall the doctors didn't say anything which I hope is a good sign. If all turns out well we'll be leaving our house before 4:30 am on Monday for the surgery.

Pictures: Ari's Birthday Party

Ari had her birthday party back in May at Elliot Oaks Farm again this year. They brought in more statues from the old Enchanted Forest. She had fun touring the animal area and they had a baby goat again this year.

Pictures: Hershey Park and Johnson's Farm

Going back a few weeks from the last posts, here are a couple of trips where we left Lily home. First is Johnson's Farm where we went strawberry picking again. The second is the Hershey Park trip that work brought back this year. As you can see, Ari made it to the second height category this year. (Hershey Kisses)

Pictures: Catonsville 4th of July

As usual, we went to the annual Catonsville 4th of July parade and fireworks. The parade was about 2 hours, which is normal. The fireworks were about a half hour long. Ari hid her head for a good portion of it, but she did enjoy what she watched. Lily just slept. Here are some pics of the parade. I have a video of the fireworks as well that I'll post later.

Pictures: Jersey Shore

We recently took a trip down the shore to the Cape May County Zoo, Avalon and Ocean City. Ari loved the zoo, the ocean and the boards. Especially the rides in Ocean City. Here are some pics from that day.

What will be here.

I originally set up this space to keep people updated on Ari as her surgery approaches and soon arrives. I've decided to expand on it and make it a place to post about the family in general, especially once Ari is on her way to recovering. The site name should hopefully be easy enough to remember and this site is supposed to work well with other programs and sites I already use, such as Picasa. It also works well with my phone.
So for now, expect info on the surgery as it approaches and I'll try to post some pics and other stuff for Ari and Lily.
Also, I'll try to make sure my phone is charged while I'm at the hospital so I can keep everyone up to date on how Ari is doing.