Wednesday, September 21st

Just wanted to get an update to everyone on how Robbie is doing. He is now on day three at the sitters and things seem to be going well. He is pretty upset when I leave him in the morning, but usually settles down and has a good day while he's there. The best part about being back at the sitter's is that he has slept through the night the past two nights. Prior to that he was waking up at least twice and for extended periods of time, really wearing out Mom & Dad.

He doesn't have the wraps on his legs or the tube in his nose anymore, so he looks like the sweet little boy we all remember. His legs are slowly regaining strength and he is now able to stand on his own as long as he has something to hold on to and his steps are getting better by the day. It won't be long before he is off and running again, which will be nice because lugging around a 25 pound kid everywhere really wears out the arms and back.

We spent last week and this past weekend updating his wardrobe. He grew over an inch and half while he was in the hospital, so none of his clothes fit anymore. We are now actually wearing the size that corresponds with his age, instead of wearing smaller sizes.

We will try to get some pictures posted in the next few days so everyone can see that smiling face again.

WE ARE HOME!!!!!

Just like I assumed, once we got home the number of blog posts would go down. Don't have as much time to keep it updated, but wanted to let everyone know that we made it home safely and we are just trying to get back into some sort of routine. Thank you so much for everyones support and love during this long surgery and recovery, it really means a lot to us to have all of you in our lives.

Robbie will stay home this week, since he has to wear wraps on his legs for one more week, then hopefully we can get him back to daycare and let him hang out with all his best friends. He is doing really well, other than waking up like clockwork at 3:00 a.m. each day and then not sleeping soundly after that. Feels like we have a newborn again, making the days extra long for us. Other than that we are good, he is loving his walks around the neighborhood and being with his dogs again.

We will get some updated pictures on here soon and try to keep everyone up to date as best we can.

Not Baltimore: Days Don't Matter

We are all three laying in bed in Pennington, NJ at Mimi's house and does it great. Now we just hope that Robbie doesn't surprise us with any other issues. We will start our trek back either tomorrow or Thursday, depending on how things go here.

Baltimore: Day 51 (September 6)

Unfortunetly we are still updating the blog from the lovely city of Baltimore. The only good thing about this town in my opinion is the weather, but that's just me.

Sorry we haven't updated the blog lately but we have had a whirlwind Labor Day Weekend. Things seemed to be going well enough after we checked out of the hospital on Saturday, Robbie was absolutely ecstatic to leave this place and just loved being outside. To see him in his car seat and dancing to the music on the radio just lit us all up with joy. Sunday was even a good day but we could see signs of bad things coming. Robbie had really been struggling to take all his medications orally, usually taking a couple of them but eventually throwing them up and losing all his meds and food and drink. Then on Sunday afternoon, after a great morning down at the Baltimore Grand Prix, we couldn't keep anything in him and he started having tremors. With all the medicine he is on we have a weaning schedule that we have to follow because if we don't he will go through serious withdrawls and could cause some serious consequences if not done properly.

As we were trying to figure out why he was tremoring, we discovered that there was serious mix up in the amount of medicine we were giving him and what he was supposed to getting. We called the Pain Team here at Hopkins and found out that instead of him getting 2.5 mL of Valium three times a day, he was just getting 1.0 mL twice a day. That answered our concerns on if he was withdrawing and we came to the ER.

After eight hours in the ER, they finally were able to get an IV in him and get us back up to Room 660. You would like to think at some point that doctors and nurses would do a better job of listening to the Mom that hasn't left her son's side in seven weeks and maybe just listen to her. Saree told them that they wouldn't be able to get an IV in his arms or hands, but they tried five times. She told them to try the feet, because they had been wrapped up while he was in the traction and that those veins were better. Magically, when they finally tried the foot they got the IV in place, only took seven hours though.

We spent all day Monday getting Robbie caught back up on his Valium through the IV and making sure that he was rehydrated after all the puking. The IV quit working yesterday afternoon so it forced us to speed up the process of putting a NG Tube in so he can get his meds through that. We will go home with the tube in so we can at least give his Valium through that since it is awful tasting and a large amount. We also had to get some sutures removed this morning and we are so glad that we had that done here instead of with our pediatrician. Dr. Gearhart said it would be really simple for anyone to do, but it ended up with Robbie needing a sedative and it still didn't stop his screaming. We like our pediatrician but this might have been a little out of her comfort zone.

We are now just waiting on the Pain Team to finalize his weaning schedule and we will be out of here. Our next post on the blog should be from Mimi's house in New Jersey. Once we get discharged, we are cleaning the McDonald room as quickly as possible and taking our car out of Baltimore as fast as possible.

Baltimore: Day 48 (September 3)

Day 48, September 3rd, is our INDEPENDENCE DAY, the day we take our freedom back from the hospital and take our little boy with us. In about two hours we will be able to get out of the hospital and try to get back to living a somewhat normal life. We are going to stay in Baltimore for a few days to make sure we don't spike any more fevers or have something come up that we need someone here at Johns Hopkins to look at. We will then head up to New Jersey for a day or so, pick up Kernel from Uncle Jer & Aunt Mel's house and start our journey home. We are still deciding if Saree and Robbie will ride home with myself and Kernel or fly home. To even have to make that decision is very exciting, because either way, we are heading home.

Yesterday was a pretty good day for Robbie, despite having to get an MRI. The MRI really didn't come back with any definitive answers for a bone infection or an absess, so the Infectious Disease team just wants us to stay close for a few days and really monitor his temperature and look for any signs of a bone infection.

Robbie was really back to himself this morning, with that big, open mouth smile and just laughing and talking all morning. The only thing we have to get him used to now is taking his medicine orally and eating normal food again. After six weeks of tube feeds and IV's it will take awhile for his stomach to back to normal.

We will keep people posted daily over the next few weeks but I can't guarantee how often that will be since we now have a 15 month old to take care of again. We want to really thank everyone for their thoughts, prayers, gifts, etc...over the past seven weeks and actually the past 15 months, we wouldn't have been able to get through all of this without your love and support.

Baltimore: Day 46 (September 1)

Well, the month of August has come and gone and we are still in Room 660, Bed 2 of Johns Hopkins Children's Center. Robbie is now free of all but two foreign objects, an IV and his feeding tube. We got the SP Tube out tonight, so everything from the surgery is now removed but we are still stuck in here because of these dang fevers that he has been getting since we got to the 6th floor. Because of the fevers they are going to do a MRI tomorrow to see if there is something in there causing these fevers that they can't see. Hopefully after the MRI we will be able to get out of here before the weekend is over.

Robbie had a pretty good day today though, being held and getting his first wagon ride in about two months. We were able to just cruise around the 6th floor and check things out. They said we could go outside, but we thought we would wait until it was closer to our departure so he isn't going crazy in his crib, wanting to go outside all the time. We know how he is at home and don't want him getting too upset if he doesn't get his way.

If anyone is planning on coming to Baltimore this weekend, for any reason, you might want to add 30-45 minutes to any drive you have because traffic is out of control. They are having the first ever Grand Prix here for INDY cars and have blocked off most of downtown, which reroutes traffic now by the Ronald McDonald House and makes it absolute gridlock.

I am trying to get some before and after pictures on here for everyone to see but I only have my phone as a camera and the pictures are not formatting correctly. Once I figure that out I will put them on here.