Mommy, Daddy and Jacob arrived safely in Baltimore this evening. Thank you for your prayers. We are most thankful that we ended up missing the strong storms that came through the area. We saw quite a few trees down near Charles Town, WV. We do have one huge praise to share - on our way up this morning, we received a call from the Children's House, advising that they had a last minute opening for us. This is a blessing for all of us. Jacob loves being here because there are tons of toys to play with and new friends to meet. He has been asking us over the past few months - when are we going to go back to The Children's House? We certainly wish that we were just here for that, but at least he looks forward to this part of out journey.
Sometime in the morning, we will be calling the hospital to find out when Jacob is to be admitted. Please pray that this process will go smoothly. Also, please pray especially for Jacob as he will have a full bowel prep and possible NG tube put in. The surgery time is scheduled for 7:30 am on Tuesday.
We also like to ask your prayers for James and Gran as both have been battling coughs lately. Please pray that they will recover soon and the Lord will keep everyone else healthy, especially Jacob. James is staying with Papa and Gran this week in Knoxville and while we know he will have a great time with them (having a small pool there doesn't hurt either)t we will certainly miss him.
We heard a good sermon on the radio while driving up today. The theme of the message was this - no matter what the circumstances, there are two things we should always do - pray and praise.
Praise the One who, by His blood, allows us to come boldly before His throne of Grace.
Mommy and Daddy
Sunday, July 25, 2010
Monday, July 19, 2010
Update on the next surgery
As of our last update, we were planning to call Dr. Lau's office this week (or thereabouts) to schedule a surgery for Jacob's stoma/colostomy repair. However, we received a call this past week from his office, advising that they already have a date for us (this is where we insert a commercial break and keep everyone on edge, waiting to find out the date).
Ok, so without commercial interruption, the surgery date is next Tuesday, the 27th. The doctor anticipates that Jacob will need to be in the hospital for about three days. Since a bowel prep is required for this surgery, he will actually be admitted the day before (the 26th) at noon. We will probably travel up on Sunday. We were pleasantly surprised and thankful that the Lord opened up a date much earlier than we expected. In the past, when we called to schedule surgeries, it was rare that it would happen sooner than 3-4 weeks after we called to make the appointment.
We certainly covet your prayers and have compiled a list of specific requests. They are as follows:
1. For Mommy and Daddy as they pack and prepare. Gran is here in Chattanooga this week and has helped tremendously by watching the boys. We are very thankful for all that she has done and is doing.
2. For good health for all of us, especially Jacob.
3. For safety in travel as we go up to Baltimore this weekend.
4. The Lodging situation - The Children's House, where we typically stay, is very busy this time of year and it doesn't appear that we will be able to get in there (although nothing is impossible with God). However, there is another family who has offered to share part of their town home with us. This town home happens to be the exact same one we stayed in during the 2008 surgery. It is close to the hospital. We would still like to get into the Children's House, but are thankful for the generosity displayed by this family.
5. For James as he will be staying with Gran and Papa in Knoxville.
6. For the bowel prep - anyone who has ever had one of these knows how unpleasant it is. With Jacob, the doctors will probably have to put a tube in his throat, and that part is very tough on Jacob.
7. For the surgery itself (including the anesthesiology) - Dr. Lau may have to put some mesh around Jacob's stoma to offer it greater support, and so this surgery may be fairly extensive. Also, in addition to praying that this surgery will be successful, please pray that he will not back track with his eating and weight gain. Ever since his stoma has been prolapsed, he has been eating well and gaining weight. Part of this may be because everything is so open and therefore things are able to "move through" easily. While we realize that his colon needs to be inside of his body, we pray that putting it back him will not cause him to go back to where he was last year (tightness, uncomfortable during the night, unable to sleep and eat well, etc).
8. For recovery - please pray that Jacob will recover quickly and that we can return home soon. James has a birthday coming up on August 7th and school starts for him on the 11th. We'd love to, Lord willing, be home before then.
Praise the Lord, for He is gracious and merciful. Praise the Lord, for He is good. Praise the Lord, for He works in and through every circumstance that which pleases Him and accomplishes His good purposes. May His Name, that Name that is above all others, be glorified and lifted up throughout this journey.
Mommy and Daddy
Ok, so without commercial interruption, the surgery date is next Tuesday, the 27th. The doctor anticipates that Jacob will need to be in the hospital for about three days. Since a bowel prep is required for this surgery, he will actually be admitted the day before (the 26th) at noon. We will probably travel up on Sunday. We were pleasantly surprised and thankful that the Lord opened up a date much earlier than we expected. In the past, when we called to schedule surgeries, it was rare that it would happen sooner than 3-4 weeks after we called to make the appointment.
We certainly covet your prayers and have compiled a list of specific requests. They are as follows:
1. For Mommy and Daddy as they pack and prepare. Gran is here in Chattanooga this week and has helped tremendously by watching the boys. We are very thankful for all that she has done and is doing.
2. For good health for all of us, especially Jacob.
3. For safety in travel as we go up to Baltimore this weekend.
4. The Lodging situation - The Children's House, where we typically stay, is very busy this time of year and it doesn't appear that we will be able to get in there (although nothing is impossible with God). However, there is another family who has offered to share part of their town home with us. This town home happens to be the exact same one we stayed in during the 2008 surgery. It is close to the hospital. We would still like to get into the Children's House, but are thankful for the generosity displayed by this family.
5. For James as he will be staying with Gran and Papa in Knoxville.
6. For the bowel prep - anyone who has ever had one of these knows how unpleasant it is. With Jacob, the doctors will probably have to put a tube in his throat, and that part is very tough on Jacob.
7. For the surgery itself (including the anesthesiology) - Dr. Lau may have to put some mesh around Jacob's stoma to offer it greater support, and so this surgery may be fairly extensive. Also, in addition to praying that this surgery will be successful, please pray that he will not back track with his eating and weight gain. Ever since his stoma has been prolapsed, he has been eating well and gaining weight. Part of this may be because everything is so open and therefore things are able to "move through" easily. While we realize that his colon needs to be inside of his body, we pray that putting it back him will not cause him to go back to where he was last year (tightness, uncomfortable during the night, unable to sleep and eat well, etc).
8. For recovery - please pray that Jacob will recover quickly and that we can return home soon. James has a birthday coming up on August 7th and school starts for him on the 11th. We'd love to, Lord willing, be home before then.
Praise the Lord, for He is gracious and merciful. Praise the Lord, for He is good. Praise the Lord, for He works in and through every circumstance that which pleases Him and accomplishes His good purposes. May His Name, that Name that is above all others, be glorified and lifted up throughout this journey.
Mommy and Daddy
Friday, July 2, 2010
Last weekend - the outcome
The scope that Jacob had last Friday went very well. Other than getting an ultrasound done in about six months (which we will have sent to Dr. G), the Urology side of things looks very good. Dr. Lau, who handles the colostomy and stoma side of things, came in during the scope to evaluate that situation. He still feels like surgery will be necessary in the coming weeks, but wants some additional time to think about the best course of action.
Jacob does not have a lot of muscle tissue in his abdomen area to help hold his colon/stoma inside. So, it is not simply a matter of putting it back in, because it may prolapse (come out) again. What he may do is put some sort of mesh in that area to be sort of a make-shift abdomenal wall. He said this is a little more complex of a surgery that the revision that he had back in January. He has asked us to call him back towards the end of this month, and make the arrangements at that time. We will let everyone know once we have a date and so forth.
As for the remainder of last weekend, we did get to attend the Exstrophy picnic that was held on Friday night and Saturday morning. Daddy BA had his five minutes of fame and delivered what he thought was an OK speech. This year was probably one of the best so far because there were about seven families there, in total, who have someone with the same condition as Jacob. They ranged in age from under one year to about 17. There were many others there, too, that have a slightly more common condition called Classic Bladder Exstrophy, but actually having our own group session with the Cloacal Exstrophy patients and families was really great.
Saturday afternoon we left Baltimore and headed toward Papa A and Grammy's home in Virginia. We stayed there Saturday night and headed out Sunday morning. We stopped by Knoxville to see Papa and arrived safely back in Chattanooga on Sunday afternoon.
For now, it is back to the summer routine. Thanks to everyone for your prayers during this past week.
"He paid a debt He did not owe, I owed a debt I could not pay - He is Jesus, Our Lord and Savior."
Daddy and Mommy
Jacob does not have a lot of muscle tissue in his abdomen area to help hold his colon/stoma inside. So, it is not simply a matter of putting it back in, because it may prolapse (come out) again. What he may do is put some sort of mesh in that area to be sort of a make-shift abdomenal wall. He said this is a little more complex of a surgery that the revision that he had back in January. He has asked us to call him back towards the end of this month, and make the arrangements at that time. We will let everyone know once we have a date and so forth.
As for the remainder of last weekend, we did get to attend the Exstrophy picnic that was held on Friday night and Saturday morning. Daddy BA had his five minutes of fame and delivered what he thought was an OK speech. This year was probably one of the best so far because there were about seven families there, in total, who have someone with the same condition as Jacob. They ranged in age from under one year to about 17. There were many others there, too, that have a slightly more common condition called Classic Bladder Exstrophy, but actually having our own group session with the Cloacal Exstrophy patients and families was really great.
Saturday afternoon we left Baltimore and headed toward Papa A and Grammy's home in Virginia. We stayed there Saturday night and headed out Sunday morning. We stopped by Knoxville to see Papa and arrived safely back in Chattanooga on Sunday afternoon.
For now, it is back to the summer routine. Thanks to everyone for your prayers during this past week.
"He paid a debt He did not owe, I owed a debt I could not pay - He is Jesus, Our Lord and Savior."
Daddy and Mommy
Thursday, June 24, 2010
Previous Post Continued
After our January surgery, we scheduled several follow-up appointments for this week, knowing that the annual exstrophy picnic would also be taking place this week as well. Jacob had a visit yesterday with Dr. Lau (general surgery - the "stoma" doctor). As soon as he saw Jacob's prolapsed stoma, he immediately said that we needed to do something about it. He noted that there are risks for problems with it being out like this. We are thankful that the Lord has sustained Jacob over these past few months and kept him free from any major complications. The most challenging aspect for us has been keeping colostomy bags on Jacob. But we'll take that any day over other colostomy, stoma or intestinal issues.
So, Jacob will have another stoma revision surgery to correct this issue. The surgery will likely take place toward the end of July. At this point, the doctor thinks that the surgery itself will last about two hours and will require a few days of recovery in the hospital. Jacob will have to be admitted the day before his surgery for the ever so pleasant "bowel prep." We will update everyone once we have a firm date for this surgery.
In the meantime, Jacob has a minor procedure tomorrow morning with Dr. Gearhart. He will be performing a "systoscopy" (we call it a scope). This scope is typically a very short procedure where Dr. G will examine his urethra to make sure everything still looks good from a Urological standpoint. Dr. Lau is also going to come in and get an initial look at his stoma as well, in anticipation of the upcoming surgery. The procedure does require a little bit of anesthesia. It is scheduled for 10:45 in the morning. Please pray that everything will go well with this procedure and that nothing will be out of the ordinary.
Jacob also had a visit with his orthopedic surgeon, Dr. Sponseller. He was very pleased with Jacob's progress and was thrilled that Jacob can now run and jump (a little). The X-Ray looked great as well. Praise the Lord!
Our older son, James, also had an appointment today with Dr. Kosov, a well known epilepsy doctor at Johns Hopkins. He is fairly confident the seizures James had last year are the type that he will likely grow out of by the time he is a teenager. We will continue to give him his medicine for at least another 18-24 months, but it does not appear that he will need any further tests or evaluations at this point.
And finally, we will be attending the aforementioned Exstrophy Picnic on Friday night and Saturday morning. This is a great event that allows families and individuals who deal with the challenges associated with bladder and cloacal exstrophy to meet, share experiences and hear from several physicians that specialize in all aspects of these two conditions. Daddy BA will be speaking at this year's picnic, specifically about cloacal exstophy. Please pray that he will do well during his "five minutes of fame."
We will provide another update following Jacob's procedure tomorrow morning and again this weekend prior to our trip back to Chattanooga.
Thank you for your faithful prayers of petition and praise.
"Jesus - there is something about that Name. He is our Lord and Saviour."
So, Jacob will have another stoma revision surgery to correct this issue. The surgery will likely take place toward the end of July. At this point, the doctor thinks that the surgery itself will last about two hours and will require a few days of recovery in the hospital. Jacob will have to be admitted the day before his surgery for the ever so pleasant "bowel prep." We will update everyone once we have a firm date for this surgery.
In the meantime, Jacob has a minor procedure tomorrow morning with Dr. Gearhart. He will be performing a "systoscopy" (we call it a scope). This scope is typically a very short procedure where Dr. G will examine his urethra to make sure everything still looks good from a Urological standpoint. Dr. Lau is also going to come in and get an initial look at his stoma as well, in anticipation of the upcoming surgery. The procedure does require a little bit of anesthesia. It is scheduled for 10:45 in the morning. Please pray that everything will go well with this procedure and that nothing will be out of the ordinary.
Jacob also had a visit with his orthopedic surgeon, Dr. Sponseller. He was very pleased with Jacob's progress and was thrilled that Jacob can now run and jump (a little). The X-Ray looked great as well. Praise the Lord!
Our older son, James, also had an appointment today with Dr. Kosov, a well known epilepsy doctor at Johns Hopkins. He is fairly confident the seizures James had last year are the type that he will likely grow out of by the time he is a teenager. We will continue to give him his medicine for at least another 18-24 months, but it does not appear that he will need any further tests or evaluations at this point.
And finally, we will be attending the aforementioned Exstrophy Picnic on Friday night and Saturday morning. This is a great event that allows families and individuals who deal with the challenges associated with bladder and cloacal exstrophy to meet, share experiences and hear from several physicians that specialize in all aspects of these two conditions. Daddy BA will be speaking at this year's picnic, specifically about cloacal exstophy. Please pray that he will do well during his "five minutes of fame."
We will provide another update following Jacob's procedure tomorrow morning and again this weekend prior to our trip back to Chattanooga.
Thank you for your faithful prayers of petition and praise.
"Jesus - there is something about that Name. He is our Lord and Saviour."
We're back - travels, appointments, surgeries and more
Things have been going quite well since our last update (over two months ago). We've seen James graduate from Kindergarten and prepare for First Grade. We've had visits from our cousins and enjoyed a couple of trips to Dollywood and Splash Country. Jacob has been attending a Pre-K program twice a week. Both boys have attended Music
Camp (James) and VBS (Jacob). Jacob can now jump a little and even run. He has gained almost five pounds since his January surgery. The urological aspect of this most recent surgery has worked very well. Jacob has been eating and sleeping very well over the past three months. This is a most welcome change for all of us. Praise the Lord for His amazing grace and the undeserved mercy that He has extended to our family.
There has been one area of concern with Jacob that has "worsened" slightly over the past few months. His stoma, which had begun to prolapse (come out) as of our last update, has gone from about 2-3 inches out to now being close to 6 inches. Essentially, instead of having this small bit of stoma (where his poo empties into a colostomy bag), it now looks like a lenghthy portion of his colon is extending from his body. The doctors have advised us that as long as the color and output are OK, then he is fine until his next scheduled doctor appointment. Those appointments are happening this week. See the next update for more info on the outcome of these appointments and what is coming next.
To quote one of Jacob's favorite songs, which he sings quite often - "My God is so big, so strong and so mightty, there's Nothing My God cannot do."
Mommy and Daddy
Camp (James) and VBS (Jacob). Jacob can now jump a little and even run. He has gained almost five pounds since his January surgery. The urological aspect of this most recent surgery has worked very well. Jacob has been eating and sleeping very well over the past three months. This is a most welcome change for all of us. Praise the Lord for His amazing grace and the undeserved mercy that He has extended to our family.
There has been one area of concern with Jacob that has "worsened" slightly over the past few months. His stoma, which had begun to prolapse (come out) as of our last update, has gone from about 2-3 inches out to now being close to 6 inches. Essentially, instead of having this small bit of stoma (where his poo empties into a colostomy bag), it now looks like a lenghthy portion of his colon is extending from his body. The doctors have advised us that as long as the color and output are OK, then he is fine until his next scheduled doctor appointment. Those appointments are happening this week. See the next update for more info on the outcome of these appointments and what is coming next.
To quote one of Jacob's favorite songs, which he sings quite often - "My God is so big, so strong and so mightty, there's Nothing My God cannot do."
Mommy and Daddy
Wednesday, March 31, 2010
Update from the past few weeks
Jacob has been doing fairly well since the last update and ER visit earlier this month. His vocabulary is growing daily and his personality continues to develop. His mobility has also been good. He is slowly recovering from a bout with bronchitis (or something like it). He has also had a couple of fevers over the past few weeks, perhaps related to the respiratory illness. They were similar to the high fever he spiked while in the hospital in that he didn't act very sick. So we are not totally sure what may have caused these, but we are thankful that they seemed to have passed.
On a separate front, we have had a bit of a concern with his stoma (colostomy). It has started to protrude as much as two inches (sometimes closer to three) from his body. We have e-mailed the surgeon at Johns Hopkins but have not heard back from him. We did, however, speak with one of the nurses by phone and she advised that as long as the color looks good and their is output, we should be OK. Everything else regarding his most recent surgery, especially the urological side of things, has been working quite well.
Please continue to pray for the things mentioned above and rejoice with us well. Jacob has been able to get back into the Pre-K program that he attended before and even though it is only once or twice a week, he seems to like it quite well. In addition, with the exception of this past Sunday when Jacob was still sick with the respiratory infection, we have been able to get back to church on a pretty regular basis.
As we approach the Easter weekend, we hope everyone will remember what this "holiday" symbolizes, that being the death and resurrection of our Lord and Saviour, Jesus Christ.
"He is Risen. He is Risen indeed."
Mommy and Daddy
On a separate front, we have had a bit of a concern with his stoma (colostomy). It has started to protrude as much as two inches (sometimes closer to three) from his body. We have e-mailed the surgeon at Johns Hopkins but have not heard back from him. We did, however, speak with one of the nurses by phone and she advised that as long as the color looks good and their is output, we should be OK. Everything else regarding his most recent surgery, especially the urological side of things, has been working quite well.
Please continue to pray for the things mentioned above and rejoice with us well. Jacob has been able to get back into the Pre-K program that he attended before and even though it is only once or twice a week, he seems to like it quite well. In addition, with the exception of this past Sunday when Jacob was still sick with the respiratory infection, we have been able to get back to church on a pretty regular basis.
As we approach the Easter weekend, we hope everyone will remember what this "holiday" symbolizes, that being the death and resurrection of our Lord and Saviour, Jesus Christ.
"He is Risen. He is Risen indeed."
Mommy and Daddy
Friday, March 5, 2010
Praise
Jacob was actually doing so well that the doctors decided to release him yesterday evening rather than keeping him for another night. He is home now and doing much better. Thanks to everyone for their faithful prayers.
God is good. Always.
Mommy and Daddy
God is good. Always.
Mommy and Daddy
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