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.