This has been a tough week for our family as a whole, not so much because of Jacob (he has actually had a fairly uneventful week), but because Daddy and James are in Chattanooga and Mommy and Jacob are in Baltimore.
In addition, Daddy had planned to head back up tomorrow (Sat), but due to the incredible amount of snow that has fallen (and continues to come down), he will try to begin his journey up on Sunday. Please pray for him as he travels, especially as he gets into the snowy areas.
Also, please pray for safety for Mommy and Jacob as they "weather" the storm in Baltimore. We are thankful to be staying at the Children's House where there are other families, plenty of food and close access to the hospital, but most of the forecasts indicate that tonight and a good of tomorrow may produce some pretty significant snows with "blizzard-like" conditions.
Unless something changes, Jacob is still scheduled for his appointment with the Urologist (Dr. G) on Monday at 3:30pm. The plan is still to remove the stint and cap off the SP Tube. We will monitor his output in both places and, Lord willing, most all of it will come out via his urethra (down below as we like to say). If things go well during this testing period (about three days or so), then Dr. G will remove the SP tube altogether and we can hopefully make our way back to Chattanooga. We are praying that we may even be able to get back by next weekend.
James has had a good week at school. His Papa had a meeting here this week so he got to spend some time with him. James and Daddy had some father/son time this evening (a little visit to Chuckie Cheese and a bite to eat from Zaxby's). Please pray for James and Gran this coming week as well. Gran will be taking care of James from start to finish each day. She does a tremendous job and we are thankful beyond words for the sacrifices she has made for us. However, it is still challenging to keep an active five year old on the right track with schoolwork, play, laundry, etc.
He is Lord over all - including the wind, rain and snow.
Mommy and Daddy
Friday, February 5, 2010
Friday, January 29, 2010
Belated update - couple of prayer requests
From a medical standpoint, the last couple of days have been relatively uneventful (we are certainly thankful for that). Jacob has been having some occasional sharp pains in his abdomen, especially last night. There really could be a number of things causing it - from a possible urinary tract infection to his positioning (we were able to take him out for a short ride in the car yesterday) to something simple like constipation or gas. With James and Daddy preparing to head back to Chattanooga this weekend (weather permitting), please pray that we might be able find out what is causing this before we leave.
James got to spend last night with his two cousins, Ronnie and Joshua. This turned out to be a real blessing, especially in light of the difficult night that Jacob had sleeping.
Daddy and James had originally planned to leave for Chattanooga tomorrow. Then, we had heard about potential weather concerns and were going to leave today. Now, with potential weather issues in TN and VA beginning today, we will probably wait until Sunday. Please pray that when we leave, we will have safety in travel.
"His truth is marching on"
Daddy and Mommy
James got to spend last night with his two cousins, Ronnie and Joshua. This turned out to be a real blessing, especially in light of the difficult night that Jacob had sleeping.
Daddy and James had originally planned to leave for Chattanooga tomorrow. Then, we had heard about potential weather concerns and were going to leave today. Now, with potential weather issues in TN and VA beginning today, we will probably wait until Sunday. Please pray that when we leave, we will have safety in travel.
"His truth is marching on"
Daddy and Mommy
Tuesday, January 26, 2010
Today's Update - James' appointment day
Jacob once again had a pretty good day. We did have a little bit of a scare this evening when Daddy accidentally tugged on his SP tube (while trying to move him from his wagon to the bed). Thankfully, it did not come out, but it did cause Jacob some pain and discomfort. Otherwise, we enjoyed a visit from Aunt RoRo, Ronnie and Joshua and also some therapy dogs. The Children's House will bring in a few dogs every Tuesday for the children and families to enjoy. This week, they brought in two - Rusty and Abbey. Abbey is a very furry and lovable Golden Retriever. Rusty is, well, about the size of a small horse. He is a Great Dane and was quite a hit with all of the little ones as he is actually taller than many of them. Jacob, James, Ronnie and Joshua (and the rest of us) all had a great time with these dogs.
Today was also James' eye doctor appointment. John's Hopkins has an incredible eye center called The Wilmer Eye Institute. It was a challenging appointment, especially when trying to get the dilating drops into James' eyes. He was so worked up from these drops that he actually fell asleep when he went back to wait for the drops to do their thing. We then met with Dr. Repka and discussed his findings. He actually concluded that he was not exactly sure what has been causing the light sensitivity in James. He doesn't think it is due to any sort of retina or vision issues because all of these things checked out fine. He likewise doesn't think it is allergy related, either. He thinks it may be related to the seizure medicine, but did not want to commit to this without checking with another doctor who specializes in seizures. He also advised that they could do some additional testing on James under anesthesia, but likewise did not really want to do this unless absolutely necessary. In the end, as simple as it may sound, we may take James off his meds to see if things change. If we do this, however, there is certainly a risk that a seizure may occur again. We will probably stay with the status quo until we are able to see Dr. Kosov here at Hopkins in a few months (we originally tried to get an appointment with him this week, but he was unavailable until March). Jacob will need to have a follow-up bladder scope sometime in early May and we might try to schedule something for James then, too.
It is sometimes easy for us to become discouraged knowing that both of our children have varying degrees of special needs. However, we know the Lord has brought us here for a reason. We may not, in this lifetime, fully understand that reason (or reasons), so our prayer is that He will be glorified in these circumstances. We pray that He will use these challenging days and weeks to show Himself to others. We have met many people here in just about every walk of life. May the Lord use even us, with all our faults and weaknesses, to show Himself to others. Please pray that our actions will evidence the faith He has given to us.
Also, we sincerely believe that it is the prayers of His people that, by His good will, help sustain us and pull us up when we are down. We have been and no doubt will continue to be encouraged by the outpouring of love and concern, not to mention all of the other help, that we have received from people spread across quite a few states.
"Let my hands perform His bidding, Let my lips speak forth His praise"
Mommy and Daddy
Today was also James' eye doctor appointment. John's Hopkins has an incredible eye center called The Wilmer Eye Institute. It was a challenging appointment, especially when trying to get the dilating drops into James' eyes. He was so worked up from these drops that he actually fell asleep when he went back to wait for the drops to do their thing. We then met with Dr. Repka and discussed his findings. He actually concluded that he was not exactly sure what has been causing the light sensitivity in James. He doesn't think it is due to any sort of retina or vision issues because all of these things checked out fine. He likewise doesn't think it is allergy related, either. He thinks it may be related to the seizure medicine, but did not want to commit to this without checking with another doctor who specializes in seizures. He also advised that they could do some additional testing on James under anesthesia, but likewise did not really want to do this unless absolutely necessary. In the end, as simple as it may sound, we may take James off his meds to see if things change. If we do this, however, there is certainly a risk that a seizure may occur again. We will probably stay with the status quo until we are able to see Dr. Kosov here at Hopkins in a few months (we originally tried to get an appointment with him this week, but he was unavailable until March). Jacob will need to have a follow-up bladder scope sometime in early May and we might try to schedule something for James then, too.
It is sometimes easy for us to become discouraged knowing that both of our children have varying degrees of special needs. However, we know the Lord has brought us here for a reason. We may not, in this lifetime, fully understand that reason (or reasons), so our prayer is that He will be glorified in these circumstances. We pray that He will use these challenging days and weeks to show Himself to others. We have met many people here in just about every walk of life. May the Lord use even us, with all our faults and weaknesses, to show Himself to others. Please pray that our actions will evidence the faith He has given to us.
Also, we sincerely believe that it is the prayers of His people that, by His good will, help sustain us and pull us up when we are down. We have been and no doubt will continue to be encouraged by the outpouring of love and concern, not to mention all of the other help, that we have received from people spread across quite a few states.
"Let my hands perform His bidding, Let my lips speak forth His praise"
Mommy and Daddy
Monday, January 25, 2010
Update for today and results from Clinic Visit
Jacob has had a good day today. He has been playing (in his wagon), talking and just being himself. James has also had a good time as well. He got to play with his cousin Ronnie for awhile last night and has met some new friends here at the Children's House. They are ages 8 and 10 and are from Sarasota, FL.
We had a clinic visit today with Dr. Gearhart (Urology). He is pleased with Jacob's progress and advised that we can now put Jacob in a car seat for short drives. This means we will likely try and visit Aunt RoRo, Uncle Ron, Ronnie and Joshua sometime this week. We are going to bring up the car seat and let Jacob "try" it out to make sure that he will comfortable.
Dr. Gearhart advised that Jacob will need to stay off his feet and continue to have his legs lightly wrapped for about two more weeks. His next appointment is scheduled for February 8th at 3:30 pm. At that time, the plan is to remove the stint from his urethra and cap off the SP tube (catheter). We will then monitor the urine output for about three days. This will involve pulling the plug from the SP tube every few hours and checking the output. Since the ultimate goal is to have the urine come out from his urethra (down below), there should not be much output from the SP tube. If everything works as planned for these three days, Dr. G will remove the SP tube entirely. Jacob should then be able to head home shortly after that. Dr. G then plans to do a bladder scope about three months after that to make sure that everything is still flowing properly through his urethra.
The doctors are still unsure what caused Jacob to have the extremely high fever. We are thankful that he has been doing much better over the past few days.
"Let every breath, all that I am, never cease to praise the Lord"
Mommy and Daddy
We had a clinic visit today with Dr. Gearhart (Urology). He is pleased with Jacob's progress and advised that we can now put Jacob in a car seat for short drives. This means we will likely try and visit Aunt RoRo, Uncle Ron, Ronnie and Joshua sometime this week. We are going to bring up the car seat and let Jacob "try" it out to make sure that he will comfortable.
Dr. Gearhart advised that Jacob will need to stay off his feet and continue to have his legs lightly wrapped for about two more weeks. His next appointment is scheduled for February 8th at 3:30 pm. At that time, the plan is to remove the stint from his urethra and cap off the SP tube (catheter). We will then monitor the urine output for about three days. This will involve pulling the plug from the SP tube every few hours and checking the output. Since the ultimate goal is to have the urine come out from his urethra (down below), there should not be much output from the SP tube. If everything works as planned for these three days, Dr. G will remove the SP tube entirely. Jacob should then be able to head home shortly after that. Dr. G then plans to do a bladder scope about three months after that to make sure that everything is still flowing properly through his urethra.
The doctors are still unsure what caused Jacob to have the extremely high fever. We are thankful that he has been doing much better over the past few days.
"Let every breath, all that I am, never cease to praise the Lord"
Mommy and Daddy
Sunday, January 24, 2010
They're Here
Daddy and James arrived last night around 9:00p.m. It was so great to see them and to see James love on Jacob. There was a bunch of hugs and kisses. James didn't want to let go of Jacob he wanted to climb up in the wagon with him and not get out. Speaking of wagon, Jacob has to be wrapped for 4 weeks and no higher than 45 degree angle so this is the only real means of transportation for him.
Yesterday was very busy for Jacob and mommy. We were discharged early in the morning, but didn't leave the hospital until around 11:00 am.
James is having a great time playing at The Children's House with some children that are about his age. Jacob will ride in his wagon for awhile, then go back to his bed to watch his "God Made ..." videos. He will literally start up three of four videos at once (between the TV,computer, Portable DVD player (thanks Grammy and Papa A) and Daddy's phone). He seems to be handling the wrap fairly well, without too many complaints. The Lord has been so gracious to Jacob because he really is (generally) pretty cheerful most of the time, which is amazing considering all that has taken place recently.
Jacob has a follow-up visit with Dr. Gearhart tomorrow afternoon at 3 pm. We are praying that they might allow him to ride in a car seat (so we can all get out a bit).
James has his appointment with the eye doctor on Tuesday at 2:30. Please pray that we might learn more about what has been causing the sensitivity in his eyes.
Daddy will be attempting to work remotely this week - please pray that he will be able to get some things done and that the technology will work as "advertised."
Gran and Papa will be traveling down here on Wednesday of this week and plan to stay until Saturday. Please pray for safety in travel for them as they drive from Knoxville. James and Daddy will probably stay until Saturday as well.
With James missing school this week, it is important that we practice his spelling words and work on his "100th day" project. Please pray that we will be able to accomplish these things this week and balance it with visits to the doctor, time spent with family and daddy's work needs.
"Lord of lords, How Majestic is Your Name in all the earth."
Mommy and Daddy
Yesterday was very busy for Jacob and mommy. We were discharged early in the morning, but didn't leave the hospital until around 11:00 am.
James is having a great time playing at The Children's House with some children that are about his age. Jacob will ride in his wagon for awhile, then go back to his bed to watch his "God Made ..." videos. He will literally start up three of four videos at once (between the TV,computer, Portable DVD player (thanks Grammy and Papa A) and Daddy's phone). He seems to be handling the wrap fairly well, without too many complaints. The Lord has been so gracious to Jacob because he really is (generally) pretty cheerful most of the time, which is amazing considering all that has taken place recently.
Jacob has a follow-up visit with Dr. Gearhart tomorrow afternoon at 3 pm. We are praying that they might allow him to ride in a car seat (so we can all get out a bit).
James has his appointment with the eye doctor on Tuesday at 2:30. Please pray that we might learn more about what has been causing the sensitivity in his eyes.
Daddy will be attempting to work remotely this week - please pray that he will be able to get some things done and that the technology will work as "advertised."
Gran and Papa will be traveling down here on Wednesday of this week and plan to stay until Saturday. Please pray for safety in travel for them as they drive from Knoxville. James and Daddy will probably stay until Saturday as well.
With James missing school this week, it is important that we practice his spelling words and work on his "100th day" project. Please pray that we will be able to accomplish these things this week and balance it with visits to the doctor, time spent with family and daddy's work needs.
"Lord of lords, How Majestic is Your Name in all the earth."
Mommy and Daddy
Friday, January 22, 2010
Morning update
Jacob is still in the hospital, but seems to be doing much better. He has started eating a little and no longer requires the Tylenol for the fever. Thank you so much for your prayers. Mommy was able to get a little bit of sleep last night, but could still use some more.
We still do not know exactly what caused Jacob to have the high fevers. They are still running tests. Jacob seems to be taking most of this in stride and we are thankful that the Lord has granted him this strength. He continues to be quite the talker and socializer, for the most part.
Daddy and James are planning to drive up to Baltimore tomorrow morning and plan to be there for the week. Please pray for safety in travel for them, especially with the possibility of some leftover winter weather issues. Also, Daddy will be driving "his" car (due to it getting much better gas mileage), which has generally been very reliable, but has nearly 300,000 miles on it. Please pray that we will not experience any mechanical or other car related issues.
"King of Kings, Forever and ever"
Mommy and Daddy
We still do not know exactly what caused Jacob to have the high fevers. They are still running tests. Jacob seems to be taking most of this in stride and we are thankful that the Lord has granted him this strength. He continues to be quite the talker and socializer, for the most part.
Daddy and James are planning to drive up to Baltimore tomorrow morning and plan to be there for the week. Please pray for safety in travel for them, especially with the possibility of some leftover winter weather issues. Also, Daddy will be driving "his" car (due to it getting much better gas mileage), which has generally been very reliable, but has nearly 300,000 miles on it. Please pray that we will not experience any mechanical or other car related issues.
"King of Kings, Forever and ever"
Mommy and Daddy
Thursday, January 21, 2010
Morning Update
After quite an ordeal with one of the ER resident doctors, Jacob was finally admitted early this morning (it is a very long story). He is taking ibuprofen to help keep the fever down and continues to basically be himself with some discomfort every so often.
We are waiting for the results of the tests from last night and will update everyone once we have these details.
Please pray that we will be able to find out what has been causing these fevers and treat accordingly. Please pray for Mommy as she got very little sleep last night due to the ER ordeal. We are thankful that God helped Mommy remain patient and calm, even as she and Jacob faced the aforementioned frustrations in the Emergency Room. There were a number of other individuals (nurses and doctors) from the three speciality areas that were a tremendous help, despite the challenges we had with the one ER doctor.
On the flip side, though, there are several nurses who have and continue to go above and beyond. Even when they are not at work or not immediately responsible for Jacob, they are always willing to help (texting, phone calls, you name it). We are so thankful to Kiki, Allie and Ashley for all that they have and continue to do for Jacob.
"How Great Thou art, how great Thou art"
Mommy and Daddy
We are waiting for the results of the tests from last night and will update everyone once we have these details.
Please pray that we will be able to find out what has been causing these fevers and treat accordingly. Please pray for Mommy as she got very little sleep last night due to the ER ordeal. We are thankful that God helped Mommy remain patient and calm, even as she and Jacob faced the aforementioned frustrations in the Emergency Room. There were a number of other individuals (nurses and doctors) from the three speciality areas that were a tremendous help, despite the challenges we had with the one ER doctor.
On the flip side, though, there are several nurses who have and continue to go above and beyond. Even when they are not at work or not immediately responsible for Jacob, they are always willing to help (texting, phone calls, you name it). We are so thankful to Kiki, Allie and Ashley for all that they have and continue to do for Jacob.
"How Great Thou art, how great Thou art"
Mommy and Daddy
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