Christmas

Sorry it has been so long since the blog has been updated, but basketball season started and things have gotten really hectic around here. We have had a few days off for Christmas and can finally breathe a little bit and recharge our batteries.

Robbie is doing great and absolutely loved opening presents and celebrating Christmas. Here are a few pictures for you to enjoy and there will be many more coming soon.

Pictures

Well, you guessed it, basketball season has started!! We are so sorry that we have been lacking in updating the blog! It is so tough to find time to sit down and relax, yet alone update the blog. Anyways, Robbie has been doing great. Aside from a cold and cough, he has been a wonderful. He is very disappointed that the weather has changed and day light savings time is taking away from his time outside. However, we did have beautiful weather for Halloween and for Robbie's first experience trick or treating. Please enjoy some of new pictures that we have taken since we have been back home!!

Back In The Groove - Oct. 10

We are all back in the groove of things now that we have been home for about a month. Robbie is doing great at daycare and actually on Friday he decided that he didn't need to hang on to anything anymore as he walked. He just took off and went about 15 steps before he relized that he wasn't holding on to anything. The biggest thing he needs to do now is continue to build his leg muscles and endurance. He gets tired really quick and once he does that his legs get stiff and walks around, peg-legged.

We had a great weekend, going on our first trip to the Kansas City Zoo. It was a great day there and Robbie loved seeing all the animals. We were impressed the zoo too, and how close you could get to all the enclosures and animals. We were also able to get over to the Legends shopping area and get some more clothes that actually fit Robbie and hear all the NASCAR action at the Kansas Speedway.

It is so nice to be home and have our routine back and it is awesome to see Robbie motoring all over the place again. He is still about a month away from being 100%, but the progress he has made in the past month is amazing to us. He is such a strong and energetic little boy.

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.

Baltimore: Day 45 (August 31)

Today started slow and frustrating but turned into the best day we have had since July 22nd. Robbie got his fixator taken out at about 6:00 p.m. and he was in Mom's arms shortly after, smiling and laughing like we remember six weeks ago. To start the day Dr. Sponseller, the orthopedic doctor, came in and had no idea we were planning on taking out the fixator today which confused us because we assumed he was in on the plan. Then in the afternoon Robbie spiked his highest fever of our stay (103 degrees). But all that changed when Dr. Sponseller came in with his wrenches and took the fixator out. I will post pictures of Robbie tomorrow that show what he looked like from Day 1 and what he looks like now. I will also add pictures of those screws.

Now that the fixator is out we are able to pick him up and hold him as long as we want to. He does have to have his legs bandaged together for two weeks with an Ace wrap just to finish the healing, but it feels so good to have him back in our arms. You can tell that he has been in a bed on his back the last six weeks because when we picked him up his poor little neck couldn't hold up his big old head. We knew that his legs would have atrophy but we never thought about the neck. It was like holding a 23 pound newborn baby. We also found out that he has a solid bald spot in the back of his head. We did a little comb-over and you can't even tell it is there, I wish I could do that.

Tomorrow morning they will clamp off the Super Pubis Tube (SP Tube) and see how things are draining. To test that they unclamp the tube every so often and see how much residual urine comes out of the bladder. If that number is low, then the will pull the SP tube because the draining is working correctly. Once that tube is out then we basically just have to make sure that he is eating and drinking and that he has no major infections or fevers. We have a chance of being out of the hospital on Friday if things go well. We still don't know if we have to stick around a few days for checkups, but just to be out of the hospital will be awesome. The light is definitely at the end of the tunnel and we just continue to hope and pray that things go as planned.

Baltimore: Day 44 (August 30)

Things have finally turned the corner and we have had a couple great days in a row. Robbie has been resting very well and his fevers have been gone for about 18 hours now. We think it's because he is now sleeping in absolutely no clothes, but that's just our theory. He now has both stints removed, one Monday and one today, and Dr. Gearhart wanted to get his pelvic Xray today, so that was taken at noon. There is a possibility that Dr. Sponseller could look at the Xray today and determine how much longer we will be here. If things look good, the fixator could come out as soon as tomorrow and then the last thing would be the SP Tube, which they would probably take out Thursday. That would get us out of here Friday, as long as there was no fever, infection or something else that could pop up. Friday would be best case scenario but it could still go for awhile longer, who knows.

I don't know if this is always the case, but the last few days since the hurricane went through have been absolutely gorgeous. It has been what I like to call "Good Fat Guy Weather". This is where, as a fat guy, you don't sweat the second you walk outside and when you actually want to be out there and just soak up as much of it as you can. Other than the news with the Xray and fixator, there hasn't been much going on, and that is good. We are just hanging out and waiting to get out of this joint. Robbie is really wanting out and we think he is just resting up now so he can enjoy his life out of bed and out of the hospital.

We are now trying to figure out how we are going to get home and get all of our things we have accumulated over the last two months. A lot will depend on if we have stick around Baltimore once we are released or if we can just head out when they let us go. Either way, it is nice to have to start thinking about going home and getting out of this room.

Baltimore: Day 42 (August 28)

Well, we survived Hurricane Irene but Hurricane Robbie rolled into town yesterday and he is still going strong. Irene was pretty impressive though, eight straight hours of heavy rain and 40-50 mph winds. Baltimore got pretty lucky because of the direction of the wind it actually blew the water in the bay south, toward the ocean and didn't cause any severe flooding. There were some power outages but for the most part everything was good here.

Robbie on the other hand blew hard for about 14 hours, starting at 9:00 p.m. last night and went strong until about 11:00 a.m. this morning. It is a combonation of a bunch of things that are causing this hurricane: two molars coming in, bladder spasms, fever and the fact that he has been strapped to the bed for five weeks and two days. We really think that he is starting to go a little stir crazy and wants nothing but to go outside. This we know because he is constantly pointing toward the window in the room and whining. Anyone that has been around him at all knows that he absolutely loves being outside and will do anything to get there.

As annoying as the bladder spasms were last night, the Urology team thought there was a silver lining because, there was some drainage from the penis and this means that things are working okay and hopefully once all the tubes are out things flow properly.

We are now just sitting in his room with Aunt Janell, enjoying his favorite CD and hopefully going to see him sleeping for a while.

Baltimore: Day 41 (August 27)

The last few days have had ups and downs but Robbie is doing well and we are hoping to get the heck out of this place sooner rather than later. The downs have been the fact that he has had high fever for about 36-48 hours, spiking at 103 degrees. They found an infection in his blood but can't seem to figure out exactly what is causing it, so their plan of attack is being delayed. We won't know exactly what is in the blood until Tuesday because they had to send it to another lab. We are now trying to brace for Hurricane Irene, which is now supposed to be a Catergory 1 and possibly just a tropical storm once it hits here in Baltimore.

The good news is that Robbie is doing well and that we will start taking all the foreign objects out of him on Monday. He currently has a stint in each kidney, a SP tube in his bladder and the fixator on his pelvis. We start by taking a stint out on Monday, another stint on Tuesday then do an ultrasound of the kidneys to make sure they are working and a pelvic XRay. If the XRay comes back good they will then take out the fixator either Wednesday or Thursday. Once the fixator is out they will clamp off the SP tube to make sure the bladder is draining out of the proper place. If everything is working, then the SP tube comes out and we are out of here. Once we are out we might have to stick around Baltimore a few days but at least be out of the hospital. So, we need extra thoughts and prayers that all the draining is good and that the XRay looks good too.

Last night Aunt Janell flew in from Prague to be here in Baltimore for the week. Mimi also came in on Thursday and stayed with Robbie last night. We have been blessed that Mimi has given up every weekend since we have been here to help give us a break and spend the time with Robbie. It has been a huge help and really has given us the breaks that we needed to get through this. We also want to thank Grandpa for coming out last weekend and also giving us a break, didn't get to do that this week in the blog.

We also want to thank everyone that has sent us cards and gifts, we are now going to hvae to get a Uhaul to get everything back to Kansas City. We just want to let everyone know that if you are planning on sending anything that you may want to just send it to our house in Kansas City, in case we get out of here next week, we don't want packages sitting in the Ronald McDonald House and we aren't there.

Now we are just going to brace for Irene and see how a hurricane compares to a midwest thunderstorm/tornado.

Baltimore: Day 39 (August 25)

The roller coaster of fevers and infections is going full speed again today. Robbie has had a fever now for about 18 hours and the doctors just came by and said that he now has an infection in his blood, but they aren't for sure exactly what it is. Obviously getting a blood infection is horrible because it can spread so quickly throughout the body and can becomre very dangerous. We are now in a delima because he doesn't have an IV in place and who knows how long that could take to get. Yesterday we waited about seven hours just to get a blood culture drawn because the PICU was so busy and their guy couldn't get down here. The worst part about getting these infections, aside from just getting an infection, are that they are all hospital-induced, meaning the only reason he is getting an infection is because he is in the hospital. The other part that is frustrating is that they have just guessed multiple times on what antibiotic will work and been wrong, so now he has a tolerance for some of the meds that could actually help him out. When you are in a hospital this long you know that you are going to get some things that most patients don't, but what is really upsetting to us is the fact that they aren't getting the right meds for the right infections and messing everything up.

The last few days have been pretty good overall though. Robbie has been resting well and when he is up is fully of personality and energy, maybe too much energy. We had to put his legs in a knee imobilizer because he figured out that he can bend them now and that is one of the biggest no-no's for the pelvis. Tomorrow is the five week mark and we are hopeful that if we can shake all these infections and fevers that we should be able to get out of here next weekend.

And if the trip couldn't be more stressful and tramatic, we are now bracing ourselves for Hurricane Irene. I mean, really, an earthquake on Tuesday and now a category 2 hurricane this weekend. Just give me the heat and humidity of Kansas City any day, at least you can turn on the AC. We can't get out of this place quick enough and hopefully the last week or so goes quicker than any week we have had so far.

EARTHQUAKE

We can officially say that this trip and stay just keeps getting better and better. Not ony are we fighting infections and trying to keep him as still as possible, throw in a 5.9 magnitude earthquake. Saree and I were at lunch and didn't know what the heck was going on. Mia, our nurse, said that Robbie just slept right through it, didn't even phase him. Being people that have never been through an earthquake before we both just thought someone was shaking the booth or worst case there was an explosion somewhere nearby. The epicenter was in northern Virginia, which is about 120 miles south of Baltimore. Quite an experience and there is talk of the east coast getting a hurricane too.

Baltimore: Day 36 (August 22)

Today was a pretty good day overall for Robbie. The cleanout process has been working as we have changed about eight diapers today and hopefully he is starting to get back to normal. Because of cleaning him out, he hasn't been able to have his normal feeds and is probably starting to get a little hungry. Also, because of the amount of laxative and no feeds his stomach seems to be cramping a little bit and causing some discomfort. Overall though he is doing really well and has actually rested a little bit today.

We met with the Infectious Disease (ID) team today because of all of fevers and infections that he has gotten and their consensus was that the infection was caused by the amount of foreign products in his body (PICC line, fixator, SP tubes, etc...) and that right now if we could keep the PICC line out of him would probably be best. Our only concern with not having a PICC line is that they have to push all his meds through his IV and especially the Valium burns when it goes in. We think that if we are just going to be here for the six weeks that we will try to just keep the IV only and start to give some of the meds orally. If we would have to stay longer than the six weeks, then we will probably put the PICC line back in, just for the ease of administering meds. Dr. Sponseller will be the one who decides if we are going to be here for six weeks or longer. I don't know what Dr. Gearhart was talking about when he said at four weeks they take a look at the xray and then decide, because they don't do that until six weeks. He was just wanting to get us out of here sooner I guess.

Everything is going pretty smoothly right now and our two big concerns with Robbie are him pulling out his IV because we don't have that many more veins to work with and him starting to really want to move a lot. I think he has realized that he has been weighted to a bed for 30 days and wants to get the heck out of here and get back into his wagon and go for a ride.

Baltimore: Day 35 (August 21)

Alright, there is a lot to catch up on since I was gone. I just got back last night and boy have there been some changes since Monday night. This morning they had to take the PICC line out because of the possible infection and the high risk of that infection going into the bloodstream. Now, with no PICC, he had to get an IV and this makes things a lot more difficult because of the amount of meds that he is on and the fact that he struggles when he gets medicine orally. The good news is that when they tested the blood cultures today everything was negative. If we can get one more negative blood test then they can put a PICC line back in and we can get back on our normal administration of meds.

They also took out his NG tube, which feeds him, for a little bit because we think that it was upsetting his stomach and causing the vomiting. We are going to try to get rid of all the poop in his system by giving him a double dose of Miralax along with his fluids. Hopefully we can clear his system, then get back to feeds and hopefully get into a routine that way. The tube is back in his nose now, but the feeds are not going.

Yesterday he battled a fever all day long but you wouldn't know it by the way he was interacting with everyone. Yesterday and today he has not slept very much and has just been as happy as a clam. We think the lack of sleep may be because they have taken away his morphine and lowered some of his other medications and he is just feeling more active. He is currently asleep right now, but that happens when you have been partying since about 1:00 a.m. He is such a happy little guy and loves to play, we can't wait to get him home so he can really play. The fever is still there today, although it is very low.

Yesterday was also "Another Round For Robbie" back in Kansas City and we want to send a huge thank you to Mick Koch for putting this event together. This year the event was partnered with the Eagle Club (Liberty North's Booster Club) so it didn't have quite the same feel as last year, but the intentions were there and we greatly appreciate everyone's generosity in helping us out. There were 11 teams that played in the event and we had 22 hole sponsors. These funds have really gotten us out of some tough spots and allow us to continue to get Robbie the best care possible for all of his special needs. We can't wait until next year's tournament so we can all be there and help make it another huge success.

Baltimore: Day 32 and 33

And now everyone can see why Mike writes the blog and not me.....I just can't keep up with everything.


Day 32
Yesterday was great day! Robbie spent the majority of the morning partying!! He was bright eyed and bushy tailed starting at 4:30 in the morning. Needless to say mom did not get much sleep, but it always makes it easier when Robbie is in such a playful mood. It is always nice to see his personality. At lunch time we had 3 great surprises. The first being for mom: Chick-fil-a brought lunch for all the parents in the hospital. IT WAS AMAZING. For all of you that don't know, Mike and I eat there regularly and has been the eating establishment of choice when we venture off hospital grounds. I was even more surprised when they had sweet tea! It was much needed after the early morning wake up call from Robbie! The 2 surprise was for Robbie. The Chick-fil-a cow made a special stop in our room to visit Robbie. He absolutely LOVED it! He was hitting the cow on the head and giving him high hoofs, it was so fun. Needless to say I think Robbie will forever hold a soft spot in this heart for Chick-fil-a. The third surprise of the day was Grandpa came from Maryville to visit for a long weekend. Robbie was so excited to see him and entertained both of us for a solid 2 hours before he caved in to his exhaustion. From that point forward we didn't hear much from him. He slept the rest of the day! I guess all excitement wore him out.



Day 33
Today unfortunately has not been as good as the last week. Late last night or early this morning Robbie got a fever. We had a new nurse today and when I got to the hospital she mentioned nothing of him being warm. Well all it took was one kiss on the forehead and I knew something wasn't right. So I immediately took his temp. Much to my disliking he had a fever. So instead of being passive, I decided to approach the nurse and get things moving on contacting the doctors and ordering labs. So with in 15 mins. we were getting xrays, having blood drawn, and urine taken. I was so glad they moved so quickly. Unfortunately, the quick movement doesn't really help us much today, but it started the culture growing process so tomorrow in the morning or early afternoon we will have an idea if there is an infection or not. I was hoping that as the day progressed this silly fever would be gone and we would back on track, but unfortunately that wasn't the case when I left tonight. Prayers for whatever is bothering Robbie to go away would be much appreciated. Other than the fever Robbie spent the entire day sleeping. Also, we did not hear anything on Dr. Sponsellor in regards to the pelvic x-ray. We did however give Robbie a baby gram today, which is a x-ray that goes from the chin to the thighs. By doing this we avoided Robbie having to get another X Ray if Orthopedics wanted one. So the X-Ray is in the computer if ortho wants to look at it!
Mimi came down for the weekend also, so now Robbie has 2 visitors. He absolutely loves to see all the extra love and attention and his momma doesn't mind a night or 2 off either!
Just a reminder that if anyone in the Kansas City area is bored tomorrow, that Another Round for Robbie will kick off at 1 pm at the Shoal Creek Golf Course! Mike will be there and we would love to see everyone out to support our sweet little boy!
As always we are so thankful for the prayers!! Please keep them coming.

Baltimore: Day 31

Well today was a fairly good day. Day 2 without dad of course didn't come without some bumps in the road, but for the most part we are doing well. Robbie spent most of the morning sleeping and watching a little of his favorite Disney shows. However, in what is now becoming typical Robbie fashion he threw up once we tried to give him some Nystatin. I am not thrilled with all this throwing up and I am really looking forward to us getting off tube feeds, I feel without a doubt that is the culprit! Another exciting thing that we had happen today is Robbie still isn't pooping on a regular basis. After a certain point this become concerning and of course we are on day 5 with out a good stool so today was the magic day it became concerning. We have tried giving him a suppository several times over the last 2 days but he keeps pushing them back out. After trying a suppository again today we pretty much got the same result however it also provoked alot of straining and pushing. He spent about an hour or an hour and half pushing today and getting nothing out. Since the suppository wasn't successful we decided to do an enema. Unfortunately, the enema made him do some more pushing and straining which caused him to puke again. Not the result we were looking for! After some more straining and pushing we eventually got something stool out but it didn't come with out some concern from mom. All of the straining put a LOT of pressure on his bladder area. I feel like things look or looked slightly different after all that pushing. We had urology come down and look at things and they felt it looked ok, but the will have Dr. G. evaluate it again tomorrow. I am hopeful that things will be ok, but it was a tense hour or so here! So please pray that he will start unleashing the poop for us tonight and tomorrow so we can move past the is poop stress!
Tomorrow Grandpa comes. Robbie will be excited to see him and I know I will enjoy having the company!
Thanks again for all the prayers and continue support! We are so appreciative!!

Baltimore Days 15 & 16

Well, first I must apologize for the lack of update yesterday. We had a busy day and night that once I got back from dropping Mike off I was to tired to blog! Well if you didn't notice your going to get mom's version of the updates for the next few days because dad had to go back home and work this week....so yup you guessed it mom is flying solo!

Day 15

Robbie had a fairly good day. He decided he wanted to spend some quality time with dad yesterday before he left so he woke him up nice and early and partied! They must have had so much fun partying that when I got here they were both sleeping. And thankfully that is how Robbie spent most of the day! He did wake up for awhile in the morning and hung out, but just around lunch time he fell back asleep. this nice because it allowed mom and dad time to grab lunch and go pick Robbie up a few movies. We got his favorite movie Cars and then picked up few others we though he might enjoy. In typical Robbie style he woke up about 10 mins before we got back and let the nurse know about how mad he was that we left without him, but thankfully once we got back he settled down and watched a little bit of Cars. otherwise Robbie slept most of the day. I must admit I am jealous with how much he gets to sleep.

Day 16

Well, today marked the day that I took on this journey alone. We decided it was a good idea that Mike go back and get the school year started off right with his students and represent us at Another Round for Robbie. He had a really hard time leaving, but it will be a good break for him. I on the other hand decided it was about time I take on this journey like so many other moms and dads have done before us and try it out by myself. Thankfully, Robbie has decided he wants to be a good boy for his momma and has really slept all day. We had a slow start to the morning. You could tell his belly just didn't feel right and low and behold it didn't because for the umpteenth day in a row he vomited. He did it right after the Dr. came in and said how pleased he was doing with his feeds. Once we got him all cleaned up the rest of the day went well. The East Coast officially ran out of Stadol today. So we had to adjust his meds. He got a little more Valium and benadryl on a 2 hour rotation. Needless to say it worked and he slept all day! I even escaped back to the RMH to mix in a very quick shower. Too close out a great day Robbie decided to puke one last time. After he did, he went right back to sleep like nothing even happened! Hopefully that continues tonight too! Overall good day, but we sure do miss our daddy!

Baltimore: Day 28 (August 14)

I am happy to say that our days have really been boring since Friday and that Robbie is resting well and staying still. We have a good "cocktail" of sedatives working right now, but that could all change this week, as the entire US is having a shortage of Stadol. We will keep our fingers crossed that whatever they decide to change to works as well as Stadol.

Mimi took off this afternoon, which is always a sad part of the weekend, because she really takes care of all three of us while she is here. This week will be interesting in another way, because I am heading home on Tuesday morning to be at the first three days of school That will leave Saree here by herself for Tuesday and Wednesday until Grandpa gets here in the morning on Thursday and Mimi will be back Thursday evening. So, if anyone is in the Baltimore area on Tuesday or Wednesday, I am sure that Saree could use your company.

Since Robbie is so calm there really isn't much to report on. We really hope it stays that way this week and then on Friday we get the good news from Dr. Sponseller that we can take the fixator off.

Baltimore: Day 26 (August 12)

Things are starting to get back on a normal track as we had a good day yesterday and have had a good day so far today. Robbie slept the most he has in a long time yesterday and today and the medicines seem to be working pretty well right now. We would still like him to sleep for longer periods of time, especially at night, but we will take what we can get right now.

We are still waiting on a good bowel movement and we are taking some more aggressive steps to get that done, with suppositories and some mild laxatives. Our concern being that if he gets constipated that it could cause problems with all work we had done in Cincinnati. We are hoping that he unloads here pretty soon and we can get in a routine.

He tolerated his feeds last night and we are now taking 30 cc's of food per hour, which is only 10 cc's away from where Nutrition wants us at. We would be there by now if they would just listen to Saree, but at least we are on the right path.

Mimi came into town last night so that is always nice to have a third person here to help out and let the other two get away and actually have someone to talk to and interact with. We are hoping to see some family friends this weekend, as Mindy and Tracy from San Antonio are in the area and we are going to try to meet up with them on Saturday if their schedule will allow. Other than that we are just back into our groove and now on the downhill slope of this journey. Today marks the halfway point for Robbie's recovery and we are hoping the second part of this goes faster than the first part.

Move To Children's House Cancelled

We have cancelled the move to Children's House because they could only guarantee us 10 days there and they might have us move out because they usually don't let people stay much longer than that. We didn't want to take the chance of being booted out of there in 10 days and then try to figure out what to do from there. We will just be staying at the Ronald McDonald House and just continue our normal routine.

Baltimore: Day 25 (August 11 @ 1:21 pm)

Things have been very interesting and eventful over the last 36 hours. We have been trying to figure out a bunch of things for Robbie; pain control, reflux control, nutrition, bowel movements and limiting his movement. To say that the stress levels are high here would be an understatement. Robbie decided to be up from 2:30 - 11:30 p.m. yesterday and just party the entire time. They took the epidural out and you could tell that he could start to feel his feet, as they were wiggling all night long. The epidural was taken out because of the bacterial infection that he has and their fear of the infection getting into the line and causing more severe problems. We have found out in the last few days that it isn't the pain that is really bothering him, but his acid reflux. He has had this problem since birth and when he is properly medicated it is not an issue. Here has been laying flat on his back and with the feeding tube in place this opens up easy access for the acid to reflux, thus causing him to stir, thus causing the doctors to add more sedative, thus causing him to be more constipated, thus causing them to add more medicine, etc, etc...

Dr. Gearhart came in today and said that we could raise the head of his bed up to 30 degrees and this will hopefully ease the reflux. Both Saree and I feel like the pain is under control, for now, and that the reflux is the culprit of the discomfort. Hopefully with his head raised some he can get the proper rest that he needs to fully recover and be able to hold down his Pediasure.

His feeds have been started and stopped multiple times now because he keeps throwing up and making us start over each time. We know that he needs his nutrition and we are glad that the doctors are finally listening to Saree and going to take the increases in feeds really slow. She suggested this to them last week and they kept trying to force more food into his stomach which has been a disaster. Now, after almost a week, they are going to follow Mom's advise and go slow in the increases. We hope that this plan works better so he can get a full belly and start to become more regular in his bowel movements.

Dr. Gearhart also said that next week Dr. Sponseller will take an X-Ray of the pelvis and it will be like Christmas morning here, either we get a present or a lump of coal. Dr. Sponseller will be looking for the bone regrowth where he had to break them. If the growth is good enough we can get the fixator out a few weeks early and just use the traction for the rest of the time (getting a present for Christmas) or the growth isn't good enough and the fixator stays until the next X-Ray (lump of coal). We obviously are hoping for a present but understand that we are at the mercy of his bones and whatever happens is what is supposed to happen.

I think that is about it from here on the 6th Floor but will update the blog again tomorrow morning and let everyone know how the rest of today went.

CHANGE OF ADDRESS

Just wanted to let everyone know that we will be moving from the Ronald McDonald House to the Johns Hopkins Children's House either Thursday or Friday. We are very fortunate to have been in the RMH since we got here, but the Children's House makes a lot more sense to us since it is right across the street from the hospital. The RMH is probably a 5-10 minute ride for us and just not as convenient. Once we are in we will put the address on the left side of the blog, where the RMH address is right now. We just wanted to make everyone aware since we know that people are mailing things to us at the RMH.

Baltimore: Day 23 (August 9)

Tuesday was a day that kept us on our toes and on edge all day. We finally got rid of the fever and got our little guys personality back all morning but by mid-afternoon the fever was back. Along with the fever we found out that he had a bacteria in his gut from all the antibiotics that he is on. This bacteria caused us quite an adventure from about 8:00 p.m. - 12:00 a.m. as we had to change his bedding six times in that time frame. Twice was because he threw up all over the place and four times because he pooped all over the place. Once he got everything out of his system though he slept really well though.

We are now trying to figure out his nutrition plan since he is completely off the TPN. The goal is for him to get 40 cc's (1.5 ounces) per hour for 24 hours. We are currently only doing about 10 cc's an hour for 12 hours, so we have a ways to go. I hope that we can get him to this goal sooner than later, just to make sure he is getting the proper nutrition he needs to recover more quickly. We also have to make sure that his Vitamin D levels are high because they have had a few kids recently that have broken bones once they got home because of the lack of the vitamin.

Robbie is doing well though and really has his personality back. The only problems with him being himself is that he hates being weighted to the bed and all he wants to do is go outside. We are lucky enough to have a window by the bed so we get some sunshine on us, but he constantly points at the window and grunts, just like he was at home and wanting nothing but going outside and riding on his buggy or wagon.

Baltimore: Day 22 (August 8)

Sorry for not posting anything yesterday, but we had a really busy day on Sunday and even busier on Monday. Robbie has been fighting a fever the last three days and they have moved from an antibiotic they were sure would work on his Urinary Tract Infection to a third antibiotic that will now just fight off any bacterial infection in the entire body. It has seemed to work, because his fever is gone for now and he is resting peacefully.

Monday was a whirlwind of day for us. Johns Hopkins does an hour long special on the local ABC here in Baltimore as a fundraiser because they are a non-profit organization. The special airs in February and it features 8-10 families within the hospital and kind of follows their story and why they are here. Dr. Gearhart gave them our names, so yesterday morning we were being interviewed and videoed for the special. So if you are in Baltimore sometime in February, turn on the ABC here and you might see our mugs on the television.

Within an hour of finishing up the interview, we had some visitors come and lift Robbie's spirits. His Aunt Mel, Uncle Jer and cousins Bryce, Cayden and Clara made the trip down from New Jersey and really livened up the 6th Floor IMC. It was great for Robbie to see them all and he had a great time playing with his cousins, as much as he could. We then all went down to the Inner Harbor for lunch and they even brought Tana (their Golden Doodle) with them and she got to experience the Harbor. They weren't able to stay too long, but it was great to see them and for Robbie to see his cousins.

Robbie hasn't slept great the last few nights because of this fever and his irritability, but we are hopeful that with the fever gone, he can get the rest that he needs. They are also taking him off the TPN and doing all the feeding through the tube at night and from him eating during the day. He has done a great job of eating for us and we are hoping that he can handle the tube feedings, as they are increasing the amount he gets in the next few days. They need his calorie count as high as possible because he is burning so many calories as his body tries to repair itself.

Things are still going well for all of us and I will make sure to not have anymore days of missing to update the blog.

Baltimore: Day 20 (August 6)

Although not as boring as most days because of a fever and some new antibiotics to fight a Urinary Tract Infection, today wasn't bad at all. Robbie has seemed to be comfortable most of the day except when he gets gas pains or when his pins are getting cleaned. He is doing an unbelievable job of adjusting to his situation and all the doctors and nurses are very happy with how things are looking and progressing. Our biggest thing now is figuring out his diet and making sure he is getting enough of everything to keep the healing process on the right track. We also are trying to get a good bowel movement each day, so that is another project that is taking some time.

We have had a good weekend with Mimi here and are just plugging along, seeing the finish line get closer and closer each day.

Baltimore: Day 19 (August 5)

Today was our most event filled day in quite some time. Robbie was asleep through most of the day but he had to get a feeding tube put in so he could start getting some real food on his stomach instead of the TPN. The tube feeds him for 12 hours during the night so hopefully we can start to get on a normal routine with bowel movements and get him used to food on his stomach. Once we get used to it and in a routine he can start eating baby food and then work his way up to solids food.

Saree & I also celebrated our 5th anniversary yesterday and Mimi was able to stay with Robbie so we could go out to dinner. We went to Little Italy here in Baltimore, which despite where it's located, really did have an Italian feel to the area. It was a really good night and we are so grateful that we have Mimi here to help give us breaks on the weekends.

Robbie is still battling with a slight fever and they might have found what was causing it, they found bacteria in his urine sample and now they are trying to see what antibiotic will work the best at getting rid of it. They don't want to start him on an antibiotic until they figure out the right one in the lab first. Robbie is doing really good though, just being as still and patient as anyone that has come through here at his age.

We are now officially two weeks into this six week recovery and I couldn't be more proud of Robbie and Saree for how they are holding up through this. Everyone we talked to said that weeks three and four are by far the hardest weeks and we can definitely see why they say that. The first two weeks went pretty quick and the last two weeks you can see the finish line, but these middle two weeks will really test your patience and will power. We know that as a family we will get through this and rely on each other to help all three of us through.

Baltimore: Day 18 (August 4)

Today had a lot more going on than the past three days and rocked our boring boat a bit. Around 4:30 am Robbie decided to wake everyone up with an absolute stink bomb of a poop. This of course takes three people and 30 minutes to change, the whole time with him screaming, so going back to sleep isn't an option. Then he thought it was a good idea to stay up the rest of the day and not really fall back asleep until 3:00 pm.

Once he did fall asleep he stayed that way for the most part until he got another fever, this one was 102.3 degrees, but didn't stay around very long. Because of the height of the fever they had to take samples though, which required getting blood drawn. When he got stuck with the needle it must have hit the right button because he instantly unloaded again and started another 30 minute changing. This time though he settled quicker and actually had a good nights sleep and got rid of his fever.

They are going to lower his TPN (nutrition) and let him drink more milk Friday so this should make for an interesting day. We were lucky enough to have an extra set of hands in the late night changing as Mimi came down for the weekend and got to partake in yet another diaper changing. Friday also marks the two week mark in our journey and now we are 1/3 of the way there.

Another Round For Robbie

We have added a place on the left hand side of the blog for those interested in participating in the 2011 edition of Another Round For Robbie. This event was a great success last year and we are hoping for the same results this time around. We want to thank everyone that made this event such a success and especially Mick Koch for spearheading this blessing for our family.

Baltimore: Day 17 ( August 3)

Once again Robbie had another good day and even decided to take a poop to put the finishing touches on it. The only bad part about him pooping is the clean up process, which takes at least three and usually four people to get the job done. Two nurses have to lift him and keep him level, while the other nurse or Mom cleans him up and changes the bedding. Needless to say, he absolutely hates this and let's everyone know about it.

Other than that, he has been on a roll with good days and we just need to keep those going. Want to make everyone aware that "Another Round For Robbie", a golf tournament to raise funds to help with all the expenses is coming up on August 20th. I will have a link on the left side of the blog later today if you would be interested in playing or being a hole sponsor. Last year was such a great success and has been a God- sent for us to help with all the surgical expenses.

Baltimore: Day 16 (August 2)

Another short and sweet post, we had our 3rd really good day in a row. Robbie was very happy all day and was able to play when he was awake. His favorite toy in the hospital are the used saline syrenges, he usually has one in each hand and at times two in his right hand. He is now able to drink Pedialyte as he can stand it. He was slow with it before lunch, but in the afternoon he chugged a bottle and wanted more. We are just hoping for yet another good, boring day on Wednesday.

Baltimore: Day 15 (August 1)

Today was a really boring day, which in our world is a great day. Robbie was in good spirits the entire day, except during bath time. He does great when they clean his pins, take vitals, do dialations, but the second you try to clean him up it's over....he is all boy. I wish there was more to say and tell everyone, but our days consist of sitting by the bed, playing with him when he's awake and then just entertaining ourselves with iPads, books, TV, etc...

Baltimore: Day 14 (July 31)

We had another very good day today. Robbie was able to get rid of his fever again and show some of his great personality that we have missed. He is doing that without squirming too much so the nurses are okay with it. I do think we are going to have to adjust his medication though, as he doesn't go right to sleep now when he gets medicated.

Great Grandma Jo, Aunt Cindy and Mimi hung around until the early afternoon and it was great to have them visit. We are very thankful for Mimi staying with Robbie Saturday night and giving us a night off. Mimi had the pleasure of being here for a night filled with four poopy diapers. Despite the aroma being awful, these poops are allowing Robbie to start getting some food here soon.

If we can continue to have multiple days in a row like the last few really lifts our spirits because we know that our little guy is as happy and comfortable as possible.

Baltimore: Day 13 (July 30)

We had another good day today and in the afternoon Mimi, Great Grandma Jo and Aunt Cindy came down from New Jersey via Laurel, Montana, to visit and stay the night. We even were lucky enough to have Mimi stay the night with Robbie to give us a night off from the hospital.

We have been driving around Baltimore for two weeks now and we finally found a part of town that was exactly what we have been looking for the entire time. The crazy part was that we were a block away from this area multiple times and just never happened to turn that direction. But now that we found it we will save ourselves a lot of time and anxiety.

They are heading back to New Jersey tomorrow so we will grab brunch at a "Miss Shirley's", which was on the show "Diners, Drive-Ins and Dives" and is known for their breakfasts.

Robbie did start to get another fever later in the evening, so that is always concerning but the doctors said that we can anticipate getting quite a few fevers during our stay because of his body trying to adapt to all the changes going on inside. Hopefully he can shake this fever and get back to just resting comfortably.

Check Out This Crew

Baltimore: Day 12 (July 29)

Today was a day that we more of...good day. Really the only thing that happened was that Robbie was able to have his first real bowel movement and what that means, other than the fact that the smell made a nurse gag, is that he can now get the tube out of nose that is sucking stuff out of his stomach and then we can slowly start to get him eating. Right now he is on TPN, supplement, to get his nutrients but food is the best thing for that.

Tomorrow we will get some more visitors as Mimi is bring down Great Grandma Jo and Aunt Cindy Lou. They are in New Jersey visiting from Montana and are making the trip down to Baltimore and staying the night. As always, it is really nice to have visitors, as it just breaks up the day and the grind a little bit.

We are now officially done with one full week in the hospital and hopefully things will go as planned and we just have five more. As long as that sounds, we are looking at it the other way and really surprised how quick the first week went and we are one week closer to getting our little guy home and back to our lives, with no bladders on the outside.

Baltimore: Day 11 (July 28)

Robbie was able to break his fever today and had a really good day. The fever started to break this morning and really broke around lunch. He was pouring sweat and soaked through his neck roll, but got the temperature back to normal. He also received 150 mL of blood today which took his hemoglobin count from 7.0 to 10.2, which we found out is a good thing. He got some of his best sleep since we got here, just peacefully resting and breathing normally.

The doctors were talking about taking the tube out of his nose tomorrow, allowing him to breath even better. It is in right now to help get all the gunk out of his stomach. He did have a giant bowel movement yesterday but they still aren't hearing any bowel sounds, so they assumed it was stuff from before surgery. Once they hear bowel sounds and he starts dumping, then he can start to eat some food. He has to obviously start slow with Pedialite but will gradually move to more substantial foods. The concern we had was with his surgerynwe had in Cincinnati to repair his Imperferate Anus, would this surgery mess up his system and cause any problems. Doctors said that there won't be any problems because he will be on laxatives and won't have any problems doing his business.

We hope we have a lot more days like today and can't believe that a week ago at this time we were preparing for surgery. Surprisingly this first week has flown by, now just another five weeks or so to go.

Baltimore: Day 10 (July 27)

Today was a pretty hectic day as we tried to get rid of this fever that has been with us since yesterday. Robbie got the gamet of tests and exams to see if they could see what was causing the fever. It is normal for post-op patients to run a fever as their body tries to fight off all the things that just happened to it. Dr. Gearhart said that over the six weeks he will be fighting a fever on and off because of his body trying to heal itself. We got the temperature down from 102.9 to 101.2 in 24 hours. The next step is to now get a blood transfusion to help get Robbie's hemoglobin levels back to normal, which is around 12. Right now he is sitting between 7.0-7.5 and with the transfusion will get his number up to 9 or 10. He needs the higher blood levels so his body can heal itself. Dr. G made a good comparison for us to show the importnace of the blood, "If a little old lady falls and breaks her hip, she loses about two units of blood to try to heal itself. Robbie had his pelvis broken in four places, so yes, blood is neccesary." He has a way of stating things to get you to understand, we love it.

Robbie is doing really good though through all of this and keeps showing us how tough and strong he really is. I am so proud of him for just doing what he needs to do in order to get out of here and get back to his life of wagon rides, buggy rides, swings and dogs.

Baltimore: Day 9 ( July 26)

We thought we were going to have a great day today because of how still and calm Robbie was all day, but Saree swore that he had a fever and something wasn't right. As usual, she was right. What was a low-grade fever has turned into a 102.7 degree fever and made us really nervous. As I type this at 2:21 am, he is still very warm and not resting as comfortable as he should be. They have taken blood and urine samples along with a chest Xray. The reason for the fever could range from infections to pneumonia, we won't know until later tomorrow. He is such a little trooper, not moving much and being strong when they are drawing blood. We can onlyhope it goes down and we don't have to worry about something else.

Baltimore: Day 8 (July 25)

Today we got moved from the PICU down to the 6th floor and the IMC. The moved went smoothly but the transition to the new setting and the fact that we got behind on his meds made for four hours of trying to keep Robbie still and enjoy our little boy for awhile. He was pointing at everything in here, playing with his soother and talking to us with his perfect Italian accented "Mama" & "Dada". He was squirming too much for Dr. Gearhart's liking, so also for ours then. He finally settled down around 8:30 pm and we finally got to eat dinner, in shifts.

Saree stayed with him last night and despite the fact that we now have a pullout chair to sleep in still got minimal rest because we now have two roommates, and one of them decided to be up all night making noises. I am sure we will get used to the sounds and things will go better for sleeping.

Mimi goes home today so it will just be the two of us for a few days. She has been a huge help for us and will be missed while she is gone.

Baltimore: Day 7 ( July 24)

We had a pretty peaceful day here in the PICU, Robbie was fairly still and would calm down quickly if he did stir at all. There was some talk of us moving to the 6th floor, where we will be the remainder of our trip, but they want to keep us here for a bit. Robbie had some high glucose readings because of the steroid he was on to help his breathing. Because of the high glucose he had to get insulin to lower those levels, which did the trick. Now we are waiting to see how he is going to breath since they stopped the steroid. If he does well without it we will probably move in the next day or so. They took the dressings off his pin spots so we got to see what that looks like, which isn't for the weak stomach people.

Tonight he was moving quite a bit more because he is getting used to the medicines, so now is when the "cocktail" of drugs come into play. They have to keep changing things as he gets used to them so he stays still and sedated. The less he moves, the better the pelvis fuses and the quicker he heals. Based on the last 14 months I think we will have our hands full trying to sedate him because being still wasn't one of his stronger characteristics.

We had our first visitors today as Mimi's cousin Chris and his family came to visit. They live in a suburb of Baltimore and came down for lunch. It was great to meet them and get a mental break for awhile.

I hope that Robbie can have another peaceful night and continue getting the rest and recovery that he needs from the surgery.

Baltimore: Day 6 (July 23 @ 10:41 pm)

Robbie is sleeping very peacefully tonight when I left the hospital. Saree is going to stay with him tonight and will hopefully have a very quiet night. They were able to give him some Tylenol today and that got rid of a little fever that he had and it also really killed the pain he was in. Like a nurse told me, the narcotics really just put you to sleep and don't necessarily kill the pain, whereas Tylenol kills the pain and lets you get comfortable. We want to thank everyone for their thoughts and prayers and we will continue to send updates.

Baltimore: Day 6 (July 23)

We have had a pretty good day of rest after the marathon surgery yesterday. Robbie is sleeping for the most part but does have an occasional outburst of pain and discomfort. The nurses are staying on top of things and our nurse today is very knowledgeable. Last night was not too bad, he could just never get comfortable. That happens when your legs are weighted down and all you want to do is curl up.

Saree had the pleasure of taking a Praxis test today in 7-12 grade Principles of Learning & Teaching. She now has a sprained wrist from writing 12 essays about stuff you are supposed to learn in college but what we learned in a study book and on the job training. Other than that not much else going on. I have had requests for a mailing address so here is our information at the RMH:
635 West Lexington
Room 206
Baltimore, MD 21201

Baltimore: Day 5 (July 22 @ 7:46 pm)

Robbie is in the PICU right now and resting from a very long 10 hours of surgery and anesthesia. Dr. Gearhart and Dr. Sponseller were both very pleased with how things went, saying that the osteotomy (pelvis correction) went as well as possible, with the bones melting together like butter. It was a very long day in the Waiting Room, but nothing like what Robbie had to go through.

The hardest thing to do now is keeping Robbie as still as possible so the bones can fuse together properly. They have his legs taped together to help the bones heal and of course have the fixator around his pelvis to screw the bones into place. As active as he is, these next six weeks are going to be a real test for him and us. He is obviously now very heavily sedated and will need to be that way for the duration of his stay.

We are very blessed that we were able to have this surgery and very blessed with all the support that we received so far from everyone. It really helps to know that our little guy is so loved. We will make sure that the blog is updated daily, since we have plenty of time on our hands to do so.

Baltimore: Day 5 (July 22 @ 2:03 pm)

Robbie is still in surgery and it is going to be at least another 3 hours or so. He is doing great and has had the osteotomy done and now Dr. Gearhart is working on his bladder. This is the long part of the surgery because he has to completely put it together and make it fit just right. Surprisingly the day has gone fairly quick and we are just hoping that the doctors and nurses stay sharp and alert and get our little boy put back together.

We will update the blog againg tonight after he is out of surgery and in the PICU.

Baltimore: Day 4 (July 21)

Laying Robbie down to bed tonight was rough, knowing that this will be the last night for 6-8 weeks that we can hold him and give him hugs and kisses good night. We were selfish and kept him way past his bedtime just to hold him and love on him as much as we could. We are now less than 10 hours away from the surgery that we have been hoping for and dreading since we figured out how to fix the bladder being exposed. We know that we are in the best place in the world to have this procedure done and that with all the love and support for Robbie all around the world that everything will be just fine.

We spent the last day before surgery today scouring the city once again. Saree has the pleasure of taking a Praxis test on Saturday morning to satisfy her requirements for certification, so we found where she is going to be taking it at Johns Hopkins University. On our "Goose Chase" we found Charm City Cakes by accident and on our way back from Target, found another part of Baltimore that we probably will try to avoid in the future. Today, we also got the ridiculous hot weather that the midwest has been getting so the second you walked outside you were soaked.

Mimi made the trip down from New Jersey today and we went to the Inner Harbor for our last non-hospital meal in 6 weeks. We ate at a great restaurant right on the harbor called "Phillips". I would recommend this place if you come to Baltimore. As someone that has never had a crab cake before, I am sure that any that I have from now on will not match the ones we had tonight.

Robbie has been such a good little boy this trip so far, despite that fact that he has two molars coming in, multiple hospital visits, rides in the car through some of the rougher parts of town and having to sleep in a pack-n-play in the same room as us.

For the surgery I will keep everyone posted on how things are going via Facebook mostly and then updating the blog as much as possible. I can update from Facebook on my phone so it is much easier to do it that way. We thank everyone for all their support and please keep the prayers and thoughts coming for Robbie during the surgery and recovery.

Baltimore: Day 3 (July 20)

We had a very good day on Wednesday, starting with Robbie sleeping pretty good despite our tight quarters here. We then headed to see Dr. Gearhart at 9:30 a.m., but just missed him because he had a surgery, so we waited around the hospital for about 45 minutes until he could see us. Once he did see us is where the really good day started, he said the rash was gone enough for him to operate. We will have the surgery on Friday morning at 7:30 a.m. (just 3 days later than planned). Now our job is to keep the diaper rash away until surgery time. Once the surgery is over, Dr. Cohen (dermatologist) will add an anti-fungal IV to Robbie, so the rash doesn't flare up.

Once we got the good news from Dr. G, we grabbed some lunch and then headed to the National Aquarium. The RMH has passes for the house members and we really enjoyed going down there. Robbie loved the fish tanks where he could get his nose right on the glass and really see the fish. He was probably a little too young to really enjoy it, but had fun anyway.

The adventure of the day started after dinner last night though. A group came in and made a giant spread of food that was delicious. Everyone ate a lot and enjoyed dinner, but about 2 hours later people were getting sick from something they ate and they actually took 9 people to the hospital for food poisoning last night. Right after Saree told me about this we both suddenly didn't feel good and thought we were going to get sick. That just tells us how powerful your mind is because neither of us were sick and probably didn't even eat the food that got people sick.

Thursday is going to be a day where we just try to relax and maybe go drive to see the ocean or something, nothing too exciting.

Pictures From New Jersey Trip

Here are some pictures from our little vacation in New Jersey. While we were there we went to State College, PA to see where Justin, Stacee, Kyler and Hudson were for the summer. Justin is a pitching coach for the State College Spikes, the Class A Short Season team for the Pittsburgh Pirates. Those pictures on the previous blog.

Then we went to Staten Island, NY for one of Justin's games and were able to take the Staten Island Ferry across to Manhattan. On the way passing by the State of Liberty. In Manhattan we just hung out at Battery Park and ate some dinner before heading back across on the ferry.

Other than those trips we just hung out at Mimi's and Uncle Jer & Aunt Mel's house, playing with cousins.

Baltimore: Day 2 (July 19)

Since our wake up call wasn't near as early because of no surgery, Robbie was able to sleep until about 8:00 this morning. We were told that Dr. Gearhart would get in touch with us around noon, so we just hung around the Ronald McDonald House (RMH) all morning. About 11:30 Dr. Gearhart called and gave us great news, we go to see him tomorrow at 9:30 a.m. for him to check Robbie's diaper rash. If the rash is better, and it has looked a lot better today, he can get us in for surgery on Friday this week. We were blown away that he was able to make this happen so soon and now just have to pray that the rash has subsided enough for him to okay the surgery.

After we got that good news we decided to venture out in Baltimore and find a Target and a place to eat lunch. We found a spot about 10 miles away from us and had a nice meal. On the way back to the RMH Robbie fell asleep so we decided to drive around so he could get a nap in for the day. Our drive took us down a Highway 40 West from downtown Baltimore. If you are ever in the Baltimore and want to see the sights DO NOT go down Highway 40 West from downtown. I have driven in some areas where I have been uncomfortable before when I was recruiting, but this one took the cake. Let me just say that we felt like the Griswold's in East St. Louis asking for directions for the interstate. If our windows weren't already up I would have used Clark Griswold's line, "Roll'em up" after he hears the gun shot. After our little outing we got caught in one of the heaviest downpours of rain I have seen in a long time. Even when we were stopped at a light, you still couldn't hardly see the car just in front of you.

Our evening was a lot more peaceful, we just had dinner here at the RMH and got Robbie a bath and laid him down early because he was so tired. Tomorrow will be a big day in how our trip goes and we just really hope that the rash is dried up enough for the surgery to happen so we don't have to have the surgery once school starts and we miss any more days than we already will.

Surgery Delayed

We got some very disheartening news today after seeing Dr. Sponseller for our Xray. Because Robbie has a diaper rash he want Dr. Gearhart to look at him to see if this would be an issue. After a 10 minute walk across campus and a 45 minute wait to see Dr. G he took about 10 seconds to say no on surgery because of the high risk of infection. Where they make the incisions is right where the diaper rash is located. We now have to wait and see how quickly the rash can clear up and if a miracle can happen and we can get a full day of Operating Room time here very soon. We were lucky in a sense today because the head of Dermatolgy happened to be there and look at Robbie himself, Dr. Cohen. Just like everyother doctor we have met here, he was a great person. We will know more tomorrow after noon and will keep everyone updated.

Surgery Date Set For July 19th

The day that we have been waiting for and the day that we have been dreading has been scheduled and we will be having the bladder put away by Dr. Gearhart on July 19th at Johns Hopkins in Baltimore, MD.

The reason for our happiness was the fact that Robbie's bladder had grown quite a bit and Dr. Gearhart was very happy to see that development. The reason for the dread is that along with putting the bladder away, Dr. Sponseller has to also make Robbie's pelvis fuse together. This requires breaking the pelvis and screwing it back together to get it to fuse. The recovery for this part of the surgery is a minimum of 6 weeks and usually more around the 8 week mark. During that time Robbie will be weighted to the bed and his pelvis will be in traction so that it can fuse together. This requires a lot of sedation in order for him to not move much and it also requires a lot hard times for all three of us because we won't be able to hold him until he is out of the traction.

We know that we are in the best hands possible, since Dr. Gearhart literally writes the textbook on Bladder Exstrophy and the surgery that Dr. Sponseller is performing is actually called the Sponseller Method. Needless to say we will have plenty of time to keep the blog updated and to get to know Johns Hopkins Medical Center. We will update the blog as the day gets closer and just ask for your thoughts and prayers once again as Robbie will be going into his 5th surgery in just a little over a year.