Well today wasn't exactly what we wanted to hear because his bladder is not big enough for him to be closed up any time soon. We were also under the impression that it would be a quick procedure and we would be on our way after he came out of anesthesia. Well, since his only 6 weeks old it is policy that we stay the night for observation. If he was 8 weeks old we would have been on the road back to New Jersey about an hour ago.
We are going to have to come back out in about 4 months and do the same thing we did today, have Dr. Gearhart re-evaluate him and see if the bladder is growing. While Robbie was sedated Dr. Gearhart was showing me that the part that is outside of his body, which we thought was bladder, is actually all polyps. When we come back in 4 months he might just remove the polyps and get them out of the way, as they serve no purpose at all.
Right now he is resting very well in his Mom's arms and just hanging out. Other than this overnight trip costing an arm and a leg, it is good to have nurses here to keep an eye on the back of his head. Dr. Ahn also came into the Operating Room and checked out his head again. He found that one of the sutures that is under the skin hadn't disolved all the way and was the culprit of the swelling and pain. He removed that suture and has Robbie on antibiotics and we can already see the improvement. We are able to lay him on his back again and feed him without him being in pain from the swelling.
The crazy thing about staying here tonight is that our nurse until 7:00 p.m. has been at Johns Hopkins for 28 years and works with the Bladder Exstrophy patients. She has already answered some questions and is prepared to be peppered with questions until she leaves tonight. Not that we want to stay a night in the hospital, but there is obviously a reason we are here and it might be to just have this nurse, Sandy, be here to answer all of our questions.
Robbie is doing great and just can't wait to get out of here and back to Mimi's house to enjoy his vacation now that his head doesn't hurt so bad. We will send more updates as they come. Keep the prayers coming, we now have 4 months to work on his bladder growing to be big enough to close up.
Wednesday, June 30, 2010
Tuesday, June 29, 2010
Back To Baltimore
We got the call today from Dr. Gearhart's office and we need to be at Johns Hopkins at 6:00 a.m. on Wednesday. Dr. Gearhart is going to sedate Robbie for a little bit and just look to see how big his bladder really is. Hopefully it is a quick procedure and we hear good news (a big bladder). While he is sedated Dr. Ahn is also going to swing by the room and check out his head again.
The swelling in his head has gone down some and is now just swollen right behind the scab. It makes the back of his head look a little pointy, but at least it isn't swollen on the entire back of his head like yesterday. We are just continuing to pray that the swelling continues to go down quickly and he can get back to normal. The only problems we have had with this swelling and pain is changing diapers and bags. He has loved all the time belly to belly though in his Snuggli.
The bad thing about all these trips to Baltimore is that we are missing out on spending time with Uncle Justin and Cousin Kyler. We are so glad that we have been able to see them and that they were able to come out here too.
The swelling in his head has gone down some and is now just swollen right behind the scab. It makes the back of his head look a little pointy, but at least it isn't swollen on the entire back of his head like yesterday. We are just continuing to pray that the swelling continues to go down quickly and he can get back to normal. The only problems we have had with this swelling and pain is changing diapers and bags. He has loved all the time belly to belly though in his Snuggli.
The bad thing about all these trips to Baltimore is that we are missing out on spending time with Uncle Justin and Cousin Kyler. We are so glad that we have been able to see them and that they were able to come out here too.
Monday, June 28, 2010
Scary Monday
What had been a great trip so far quickly turned scary at 3:00 a.m. when the back of Robbie's head became very swollen and ultra-sensitive to touch. The swelling was below his incision from his surgery to remove the encepholocelle. At 4:30 a.m. we had seen enough and loaded up the car and headed to the ER at the Princeton Hospital. We got checked out by the doctor and he said that it didn't look good but that it wasn't infected.
Before we left for the ER we had emailed Dr. Gearhart and tried to call Children's Mercy to talk to the On Call Neurosurgeon. We left the ER about 6:00 a.m. and were just waiting to hear back from one of the doctors to see what we should do and where we should go. Of course Dr. Gearhart was the first to get back to us and said he would try to put us in touch with his Neurosrgeon at Johns Hopkins. By 7:45 a.m. we were loaded up and headed to Baltimore. Dr. Gearhart had given our info to Dr. Ahn and he said he could squeeze us in between 11:00-12:00 if we could get there. By the way, we are still waiting to hear from the On Call person from Mercy.
The drive to Baltimore was about 2 1/2 hours and we were sitting in Dr. Ahn's Conference Room at 11:00 a.m. He checked out Robbie's head and scheduled us an ultrasound so he could see if it was just fluid build up, which is common after a surgery like this or if was a larger leak and potentially something that would require a shunt to be inserted. His gut feeling was that it was just a random leak and that there was no cause for serious concern. We went and got the ultrasoud done and the radiologist thought everything looked ok. We headed home about 3:00 p.m. and were about 15 minutes from Mimi's when Dr. Ahn called back and said everything looked good and that it was just a random thing that happens in these surgeries. We are now just making sure that the wound doesn't leak any fluid, the swelling doesn't increase and the area doesn't get red and cause a fever.
To say we are impressed with the care thaat Johns Hopkins has given us is a huge understatement. Dr. Gearhart might be the most caring person we have ever been associated with. He met us in person for the first time on Friday and is getting us in with a neurosurgeon on Monday. Dr. Ahn had no idea who we even were and treated us like we've been his patient from the start. If anyone ever has a need for any type of specialist in their life you need to see about getting out to Baltimore and heading to Johns Hopkins right away. There's a reason why someone like myself had heard of Johns Hopkins even before I needed them in my life. They are the best of the best and have been a God-sent for us. Thank God I ran into a coworker in the elevator at Mercy and she mentioned Hopkins.
Now we are planning on going back to Hopkins on Wednesday so Dr. Gearhart can take a look at Robbie's bladder and see how big it really is. At least now we know how to get to Hopkins and can just make the drive more enjoyable Wednesday. Just please send prayers that the swelling goes down and that his bladder is big enough to close up.
Before we left for the ER we had emailed Dr. Gearhart and tried to call Children's Mercy to talk to the On Call Neurosurgeon. We left the ER about 6:00 a.m. and were just waiting to hear back from one of the doctors to see what we should do and where we should go. Of course Dr. Gearhart was the first to get back to us and said he would try to put us in touch with his Neurosrgeon at Johns Hopkins. By 7:45 a.m. we were loaded up and headed to Baltimore. Dr. Gearhart had given our info to Dr. Ahn and he said he could squeeze us in between 11:00-12:00 if we could get there. By the way, we are still waiting to hear from the On Call person from Mercy.
The drive to Baltimore was about 2 1/2 hours and we were sitting in Dr. Ahn's Conference Room at 11:00 a.m. He checked out Robbie's head and scheduled us an ultrasound so he could see if it was just fluid build up, which is common after a surgery like this or if was a larger leak and potentially something that would require a shunt to be inserted. His gut feeling was that it was just a random leak and that there was no cause for serious concern. We went and got the ultrasoud done and the radiologist thought everything looked ok. We headed home about 3:00 p.m. and were about 15 minutes from Mimi's when Dr. Ahn called back and said everything looked good and that it was just a random thing that happens in these surgeries. We are now just making sure that the wound doesn't leak any fluid, the swelling doesn't increase and the area doesn't get red and cause a fever.
To say we are impressed with the care thaat Johns Hopkins has given us is a huge understatement. Dr. Gearhart might be the most caring person we have ever been associated with. He met us in person for the first time on Friday and is getting us in with a neurosurgeon on Monday. Dr. Ahn had no idea who we even were and treated us like we've been his patient from the start. If anyone ever has a need for any type of specialist in their life you need to see about getting out to Baltimore and heading to Johns Hopkins right away. There's a reason why someone like myself had heard of Johns Hopkins even before I needed them in my life. They are the best of the best and have been a God-sent for us. Thank God I ran into a coworker in the elevator at Mercy and she mentioned Hopkins.
Now we are planning on going back to Hopkins on Wednesday so Dr. Gearhart can take a look at Robbie's bladder and see how big it really is. At least now we know how to get to Hopkins and can just make the drive more enjoyable Wednesday. Just please send prayers that the swelling goes down and that his bladder is big enough to close up.
Sunday, June 27, 2010
Bladder Exstrophy Picnic
We had a great time this weekend at the Bladder Exstrophy Picnic in Cockeysville, MD, just outside of Baltimore. The festivities took place at Oregon Ridge State Park. We were able to finally meet Dr. Gearhart in person and it was an honor. He is such a great person that truly has his patients best interests at heart. He has seen over 950 exstrophy patients since he started specializing in this area 24 years ago. There were at least 50 of his former and current patients that made it to the picnic and every single one of them would rush up to say hello to him. His personality and dedication to his field are very impressive and you can see why people come from all over the world to have him work on them.
The entire picnic was very informational and interesting. We were able to not only listen to doctors talk about exstrophy, we were also able to sit down in small groups to talk about every little detail that goes along with exstrophy. Simple questions that we have had over the last six weeks, we were able to talk to parents and patients that have gone through it and see how they dealt with them. Robbie was the youngest one there with exstrophy and the ages ranged all the way up to a patient 40 years old.
Being able to just talk to individual families and listen to what they have gone through really made us realize that, although it is going to be very difficult and a life-long ordeal, we can and will get through all this. The great thing we saw at the picnic were all the teenagers that you would have no idea had exstrophy. We were actually trying to figure out who had exstrophy and who didn't. It really seems to be a close-knit community and we are very fortunate to have found Dr. Gearhart and all his patients.
On Saturday after the last speaker Dr. Gearhart gave Robbie a quick examination to see how he looked in person. While he was looking at him he told us that the part that was exposed was not all bladder. On each side of the bladder were polyups, that are not cancerous and will just be removed when the bladder gets put back in. Since the exposed bladder isn't as big as we thought, the surgery may be delayed now so his bladder can get bigger. Instead of now going to our appointment on July 6th he wants us to call on Monday and see when we can get in this week. He just wants to sedate him for about 5 minutes so he can get a good look at his bladder and determine when he should operate on him. If the bladder is big enough he worked out his schedule to get him in on July 14th to close up the bladder. We are hoping that the bladder is big enough to help both Saree and I save some days of vacation before school starts.
We are now just asking for prayers that his bladder is big enough so he can get closed up sooner than later. I will updated the blog again tomorrow and let everyone know when we are going back to Baltimore this week. There will also be more pictures added of the cousins with Robbie.
The entire picnic was very informational and interesting. We were able to not only listen to doctors talk about exstrophy, we were also able to sit down in small groups to talk about every little detail that goes along with exstrophy. Simple questions that we have had over the last six weeks, we were able to talk to parents and patients that have gone through it and see how they dealt with them. Robbie was the youngest one there with exstrophy and the ages ranged all the way up to a patient 40 years old.
Being able to just talk to individual families and listen to what they have gone through really made us realize that, although it is going to be very difficult and a life-long ordeal, we can and will get through all this. The great thing we saw at the picnic were all the teenagers that you would have no idea had exstrophy. We were actually trying to figure out who had exstrophy and who didn't. It really seems to be a close-knit community and we are very fortunate to have found Dr. Gearhart and all his patients.
On Saturday after the last speaker Dr. Gearhart gave Robbie a quick examination to see how he looked in person. While he was looking at him he told us that the part that was exposed was not all bladder. On each side of the bladder were polyups, that are not cancerous and will just be removed when the bladder gets put back in. Since the exposed bladder isn't as big as we thought, the surgery may be delayed now so his bladder can get bigger. Instead of now going to our appointment on July 6th he wants us to call on Monday and see when we can get in this week. He just wants to sedate him for about 5 minutes so he can get a good look at his bladder and determine when he should operate on him. If the bladder is big enough he worked out his schedule to get him in on July 14th to close up the bladder. We are hoping that the bladder is big enough to help both Saree and I save some days of vacation before school starts.
We are now just asking for prayers that his bladder is big enough so he can get closed up sooner than later. I will updated the blog again tomorrow and let everyone know when we are going back to Baltimore this week. There will also be more pictures added of the cousins with Robbie.
Saturday, June 26, 2010
Planes, Trains & Automobiles
We traveled in about every way possible the last two days all over the east coast. We started our adventure Friday morning with a 6:30 a.m. flight from Kansas City to Baltimore. When we landed in Baltimore we rented a car and drove about 30 miles to Cockeysville, MD to go to the Bladder Exstrophy Picnic (I will blog a lot more about that tomorrow when I'm not so tired). After spending the night in Maryland and going to the Picnic this morning, we hustled back to the airport to drop off the rental car and then caught a train to Trenton, NJ. The train ride was a very quick two hours, making stops in Deleware and Pennsylvania before our final stop in Trenton. Mimi, Uncle Justin and Cousin Kyler were at the train station to pick us up and take us to Pennington, NJ. We were able to also see Uncle Jeremy, Aunt Mel, and Cousins Bryce, Clara and Caden. It has been a whirlwind 48 hours with lots of information and we are just going to sleep then tell you all about the Picnic and Dr. Gearhart tomorrow.
Friday, June 25, 2010
The Journey Begins
We are sitting in the airport waiting to board the plane to Baltimore. It was a very early morning, but at least we are used to getting up at 3:15 a.m. and staying up for a few hours so it wasn't as bad as it should be. He has been really good so far, just sleeping and enjoying his car seat. Thankfully we have a direct flight to Baltimore, maybe we can survive the take off and landing without any major meltdowns, that's our hope.
When we get into Baltimore the plan is to pick up the rental car and then head out to Cockeysville, MD, the site of the Picnic. We will check into our room and hopefully all of us can get a good nap in before 6:00 p.m. The Picnic goes for about 3 hours tonight and then another 3-4 hours tomorrow morning. From the Picnic we head back to the airport, drop off the rental car, and hop on a train to Trenton, NJ. Since we have only riden the train one time and we were without a little one, we are a little nervous about lugging our bags, pushing a stroller and getting "All Aboard".
Now that we will have good internet access the blog will be updated better than it has the last month or so. Any news that we get we will let everyone know. Tonight should be very informational and interesting.
When we get into Baltimore the plan is to pick up the rental car and then head out to Cockeysville, MD, the site of the Picnic. We will check into our room and hopefully all of us can get a good nap in before 6:00 p.m. The Picnic goes for about 3 hours tonight and then another 3-4 hours tomorrow morning. From the Picnic we head back to the airport, drop off the rental car, and hop on a train to Trenton, NJ. Since we have only riden the train one time and we were without a little one, we are a little nervous about lugging our bags, pushing a stroller and getting "All Aboard".
Now that we will have good internet access the blog will be updated better than it has the last month or so. Any news that we get we will let everyone know. Tonight should be very informational and interesting.
Sunday, June 20, 2010
Father's Day
Father's Day took on a whole new meaning today for me. Being able to spend the day with my beautiful wife and our new little boy was something I never thought could feel so good. We were able to go to lunch with Dad, Shari and Caroline, so that was good to be able to be with Dad on this day too. We had a very good and relaxing day. Robbie was great today, very peaceful and happy. We got him some medicine for his Acid Reflux and it has made our lives a little less stressful, we are avoiding the meltdowns. We spent the afternoon watching "American Pickers" (thanks Zach) and napping. Not a bad Sunday. We wish all the Dads out there a very Happy Father's Day and hope it was as good as mine.
Saturday, June 19, 2010
Wiped Out...Who's More Tired????
It was a good, long day today for Robbie and Lucy. Uncle Mike and Aunt Sondra made the trip down from Filley, NE today to see Robbie. It was great to see them, it has been a long time. We are hoping to get Robbie up there sometime soon so he can go fishing at their pond.
Friday, June 18, 2010
Baltimore Here We Come
We have our flight booked and we are heading out east next Friday, June 25th. We are flying into Baltimore in the morning and going to get ready for the Bladder Exstrophy Picnic that night at 6:00 p.m. The Picnic continues again Saturday morning and ends with lunch at noon.
After the Picnic we are going to take the train up to New Jersey, wish us luck. We are going to have a ton luggage because we are out there until at least July 7th. Robbie's appointment with Dr. Gearhart is on July 6th. Right now we are anticipating his surgery being shortly after his appointment, but we aren't for sure.
I have attached the website for the Picnic and what we are planning on doing next weekend. I have also added the link to the Pediatric Urology Clinic at Johns Hopkins. This is a very informational site, helping to explain exactly what Robbie is going through.
Thursday, June 17, 2010
First Royals Game
Tuesday night we were able to take Robbie to his first Royals game and it was a good night. Uncle Zach bought the tickets and Robbie was able to see Pops, Nana, Uncle Rog, Uncle Zach, Uncle Boston and Aunt Caroline. The weather was perfect and within the first 10 minutes we were able to meet Slugger. This will be the first of many games for Robbie, especially when we can get the house sold and moved to Liberty.
Tuesday, June 15, 2010
Info On Johns Hopkins
Yesterday we got an email from Dr. Gearhart at Johns Hopkins and he put us in touch with a Mom in Louisville whose son has the exact same thing as Robbie. Saree was able to talk to Stacy, the Mom in Louisville, for about an hour and a half last night. It was pretty overwhelming at fiirst, but very informational. It gave us a great idea of what we have in store for us in the future. This entire process is going to be very long and an everyday issue for the rest of Robbie's life. The best thing is that we are going to the absolute best doctor in the world for the exposed bladder and undeveloped pelvis. Stacy said that there is no one else out there that can do what Dr. Gearhart can. We are very fortunate to have found him and to be able to get in to see him.
This process starts with a full 6 weeks in Baltimore to put the bladder back and get the pelvis developed. Then we will have to look to go to Cincinnati to get his imperforated anus fixed. There is a clinic there that only does this type of surgery and this is where Dr. Gearhart would send his child to have it done. After we get these things done then there is the reconstruction of the penis around the 12 month mark and then they do Bladder Neck Reconstruction around the age of 6 or 7.
Stacy gave us some great insight on all the trials and tribulations that we will face during this process. It is tough to hear, but it is nice to know what we are getting into before we jump right in. After all the surgeries we will then have to really work on the mental part of this disorder and make sure that Robbie is able to handle all the complications that come with it. It sounds like it is all about being disciplined and staying on top of things, so hopefully he will be able to do this.
Please just keep the thoughts and prayers coming to our little guy because this process will be very tough on him for the rest of his life. We know that we are in the best hands that we can be in and are blessed to have found out about Dr. Gearhart.
This process starts with a full 6 weeks in Baltimore to put the bladder back and get the pelvis developed. Then we will have to look to go to Cincinnati to get his imperforated anus fixed. There is a clinic there that only does this type of surgery and this is where Dr. Gearhart would send his child to have it done. After we get these things done then there is the reconstruction of the penis around the 12 month mark and then they do Bladder Neck Reconstruction around the age of 6 or 7.
Stacy gave us some great insight on all the trials and tribulations that we will face during this process. It is tough to hear, but it is nice to know what we are getting into before we jump right in. After all the surgeries we will then have to really work on the mental part of this disorder and make sure that Robbie is able to handle all the complications that come with it. It sounds like it is all about being disciplined and staying on top of things, so hopefully he will be able to do this.
Please just keep the thoughts and prayers coming to our little guy because this process will be very tough on him for the rest of his life. We know that we are in the best hands that we can be in and are blessed to have found out about Dr. Gearhart.
Monday, June 14, 2010
Morning With Dad
Saree went to work basketball camp at Missouri Western this morning, so it was Robbie and Dad time. We spent the morning watching World Cup soccer then had to take the car in for an inspection and oil change. I thought he might be able to pick some things up at the shop, since Dad doesn't know much about cars, but sleep was more his thing. He was absolutely perfect for his Dad and has been a great boy all day today.
Saree went back to the Breast Feeding Group again tonight and of course he was perfect again for the nurses. He weighed in at 9 pounds 4 ounces and was able to eat the most he has ever had, 5 ounces. He quickly got rid of an ounce or so as he was laid into his car seat, but it was good that he ate that much.
We might have a long night ahead of us because he went back to he sleeping all day today. He didn't sleep much this weekend, so he sure made up for it today.
Saree went back to the Breast Feeding Group again tonight and of course he was perfect again for the nurses. He weighed in at 9 pounds 4 ounces and was able to eat the most he has ever had, 5 ounces. He quickly got rid of an ounce or so as he was laid into his car seat, but it was good that he ate that much.
We might have a long night ahead of us because he went back to he sleeping all day today. He didn't sleep much this weekend, so he sure made up for it today.
Sunday, June 13, 2010
Off To Maryville We Went
Robbie made his first trip to Maryville today and finally met his Uncle Zach in person. We went to Granny's house first for lunch with Granny, Uncle Rog, Uncle Zach and the Lades, then headed over to Pops and Shari's house for a little while. Of course, when there are people around to help take care of him during the day he is lights out. He slept pretty much all afternoon, which he needed, but that would have been nice yesterday.
Saree has basketball camp at Missouri Western this week, so it will be me and my boy in the mornings this week. We have been locked in to watching the World Cup, especially those games that start at 6:00 a.m. because they are in South Africa. We are planning on booking our flights this week to Baltimore. We can't wait to get out there and have Dr. Gearhart check him out and be able to take care of everything that needs to be done.
Saturday, June 12, 2010
No Sleep Saturday
Today has been a very long day for Robbie, he just can't seem to fall asleep for longer than 20 minutes at a time. He has been eating well but just can't seem to get comfortable enough to just fall asleep. He is now in his swing crying his eyes out but we are going to see if he can soothe himself, he has to learn how to at some point. This is the first day since he's been home that he hasn't been sleeping all afternoon. As bad as we feel for him because we know he is exhausted, maybe this is what he needs to get a good nights sleep.
Saree and I are now trying to decide when we are going to head to Baltimore. Since his appointment with Dr. Gearhart is for July 6th and the Exstrophy Picnic is on June 25th we are just trying to see if we can do both. I think we are going to plan on doing both, just trying to work out the logistics with Mimi. We both really want to meet people at the picnic and see what our future has in store for all of us.
Saree and I are now trying to decide when we are going to head to Baltimore. Since his appointment with Dr. Gearhart is for July 6th and the Exstrophy Picnic is on June 25th we are just trying to see if we can do both. I think we are going to plan on doing both, just trying to work out the logistics with Mimi. We both really want to meet people at the picnic and see what our future has in store for all of us.
Wednesday, June 9, 2010
No More Stitches
We were in the doctor's office for about 15 minutes today, that's all it took to snip and remove all 18 stitches. Robbie was a little fussy, but really did a good job of just sitting there as the stitches were removed. They want us back in August for an ultrasound of his head, just to see how everything is looking. They really liked what they saw with his head and were impressed with how the incision healed up.
We also put the "For Sale" signs up tonight when we got back to the house. The house is officially on the market, so if you know anyone in St. Joseph looking for a house send them our way.
We also put the "For Sale" signs up tonight when we got back to the house. The house is officially on the market, so if you know anyone in St. Joseph looking for a house send them our way.
Tuesday, June 8, 2010
Quick Update
Things are going pretty well since the last post. We are still battling his sleeping routine, trying to get him to sleep more during the night. He has been eating well and yesterday weighed 9 pounds 1 ounce. Saree took him to a Breast Feeding Group to see if they could help get the nursing figured out, but of course he ate perfectly and fell right to sleep. When we tried to nurse at his next feeding he had his typical meltdown and blew his bag out, so that was not much fun.
We go tomorrow back to Children's Mercy to get his stitches removed from his head. We are hoping, and are positive, that this will be the last we have to worry about anything with his head. We can then just concentrate on the exstrophy and get everything worked out with that.
Again, thank you for all the support and prayers, we would really be struggling without a great group of people around us. We will make sure to get a good picture of the back of his head without stitches for tomorrow.
We go tomorrow back to Children's Mercy to get his stitches removed from his head. We are hoping, and are positive, that this will be the last we have to worry about anything with his head. We can then just concentrate on the exstrophy and get everything worked out with that.
Again, thank you for all the support and prayers, we would really be struggling without a great group of people around us. We will make sure to get a good picture of the back of his head without stitches for tomorrow.
Saturday, June 5, 2010
Who's Tired???
Robbie is. Robbie does a great job of sleeping, it just happens to be during the afternoon and not so much during the night. The only good thing about that is that I can really watch some infomercials and will probably end up buying something from those ads.
We had a good night last night and a good day today on our own with the little guy. From reading some books and trying to figure things out, we both agree that he is Colicky. He has the classic symptoms of Colic and it is not helping out his sleeping habits. I guess if you wouldn't have books or resources you would just think he's being a baby and that babies are going to cry and fuss.
Friday, June 4, 2010
July 6th Trip To Baltimore
Well, we have our appointment set at Johns Hopkins for July 6th at 9:15 a.m. It will be really good to have the doctor that writes the textbooks on Exstrophy take a look at Robbie. Now we are checking to see if we are still going out June 25-26 for the Exstrophy Picnic, I think we will. With the trip out east we will head up to New Jersey for a little mini-vacation while we are out there and stay with Mimi and see Uncle Jer, Aunt Mel, Cousins Bryce, Caden and Clara.
We go back this Wednesday to Children's Mercy to get his stitches taken out of his head. This will hopefully be the last time we see Dr. Hornug and the Neurosurgery team and have to deal with the Encepholacelle.
Wednesday, June 2, 2010
Robbie Made His First Trip To Liberty
Robbie was able to see where his Dad works and met his coworkers. He spent the afternoon at Liberty Junior High School and was a hit. He had a little blowout right away so that took some time to get his bag changed. It was the first bag change out of the house.
Saree met with her new teams today after school. If you didn't know, she is going to be the softball and basketball coach at the new high school in Liberty, Liberty North. Since she's taking that job, we will be moving to Liberty as soon as we can sell our house here in St. Joseph. We are really upset that we have to sell our house, we really love it. If you know anyone in St. Joe that is looking for a great house just send them our way.
After the junior high we made a trip to the soccer field to watch the Liberty girls soccer team practice and during a water break the basketball girls all came over to meet the little guy. The girls are headed to St. Louis this weekend to play in the Final Four and should come home with a state title. Robbie wishes them the best of luck and wishes he was awake to really meet them.
He has had a really good day and hopefully the night is the same way.
Tuesday, June 1, 2010
June 25th Trip to Maryland
After multiple emails and checking with insurance we are going to plan on heading to Maryland later this month to go to the Johns Hopkins Exstrophy Center's Annual Picnic. This picnic is a great opportunity for us to learn a lot about this disorder and to meet hundreds of patients of all ages with exstrophy. The picnic is June 25 & 26 just outside of Baltimore and will be a great opportunity for us to have Dr. Gearhart examine Robbie and get more information on what we have in store for our future. We are very excited about the picnic and even more elated to have Dr. Gearhart checkout our little one. I will continue updating the blog with more details after I talk with Dr. Gearhart's secretary tomorrow.
Possible Trip To Johns Hopkins
We are looking into the possiblity of making a trip out to Johns Hopkins in Baltimore, MD to meet with Dr. John Gearhart. Dr. Gearhart is one of the most recongnized doctors when it comes to exstrophy and we have been emailing each other back and forth for the past week. We were able to get his email from a family member who worked out there and he has been more than impressive with his information and expertise.
Now we are just making sure we can go out there insurance-wise and when the best time to meet with him would be. All he works with are exstrophy patients in his own Exstrophy Center. Even if we stay here at Children's Mercy with Dr. Murphy it is never a bad thing to get an experts opinion on the matter. Dr. Gearhart has litearlly written the text book on exstrophy. We will keep everyone updated when we find out more details on the trip.
Now we are just making sure we can go out there insurance-wise and when the best time to meet with him would be. All he works with are exstrophy patients in his own Exstrophy Center. Even if we stay here at Children's Mercy with Dr. Murphy it is never a bad thing to get an experts opinion on the matter. Dr. Gearhart has litearlly written the text book on exstrophy. We will keep everyone updated when we find out more details on the trip.
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