Progress, Prayer and Praise

I'm sure that if Jacob could really put together full sentences at this point in his young life, he would certainly say, "It sure is great to be home." I know that Courtney and I thank the Lord daily that we are all back home together again. And while Jacob isn't busting out long sentences, we have seen his vocabulary grow a little each day. He especially enjoys repeating what his older brother says, and James is seldom ever at a loss for words.

Jacob is making good progress all the way around, but there are still some challenges. He's down to only three medicines a day, one of which is only required once per day. His right side pin site has healed well and does not require us to "burn" it any longer. With the help of a Physical Therapist and lots of extra practice, Jacob is now able to sit up pretty well on his own. He has also begun walking again with the help of a mini-walker. He seems to have a very strong desire to walk, motivated in large part by his older brother James. His legs are still a little bit week and his balance is still off, but he improves a little with each day. I almost can't wait for the day I come home from work and he is able to walk or crawl over to the front door to greet me. That will be a great day.

His SP tube and urine bag have pretty much worked as they are supposed to. We had a slight scare one day last week when it appeared that the tube had become clogged. We are thankful that it was actually the bag that was having the problem, and once we removed it, everything began flowing again. We still have to "probe" his stoma on a daily basis, however, we are thankful that the Lord has not only allowed this process to go smoother (i.e. it goes in easier and is slightly less irritating), but has also led several nurses from our church (and a home health nurse who comes once a week) to help relieve us from having to do this all by ourselves. These ladies have all been a blessing to us and we thank God for giving them the heart, desire and skills to help out us out. We have also been blessed to have several families from our church bring us dinner a few times a week. I would be remiss, though, if I didn't thank everyone who has and continues to pray for us each and every day. The Lord hears our prayers and uses them to His glory.

There are several things, though, for which we ask that you pray.

1. Jacob still has trouble sleeping at night and we can't always tell what might be bothering him. We think that often times it may just be gas, but we know that it could be a number of things. Courtney and I are pretty tired, but the Lord continues to be merciful to us and grants us strength, even when we're not sure if we can get out of bed in the morning.

2. Courtney just had surgery on a "bad" tooth today that had been causing her pain for the past few months. The Lord was gracious in that the tooth did not bother her much in Baltimore, but shortly after we arrived back in Chattanooga, the pain kicked in again. We ask that you pray for complete healing and that her pain will subside soon.

3. Courtney's grandfather (Gramps) passed away this past Sunday after battling several health issues for quite some time. Services will be this weekend. He was a wonderful example of what it meant to be a servant to others and we will miss him greatly. We are thankful, though, that he is no longer suffering and is now with his Lord and King in heaven.

4. We must still continue to "burn" the wound site that is located slightly above Jacob's urethra. This "wound" was the place where the false entry point was created back when we were having difficulty cathing him. The wound has "granulized" (not sure if this is the exact word) and we basically have to use silver nitrate to actually burn this tissue. It is a quick, but very painful process (for both us and Jacob). Please pray that this area will heal soon and no longer require this process.

5. It is hard for us to believe sometimes, but our older son James will be heading off to Kindergarten next year, Lord willing. Please pray for wisdom for us as we seek to find the right school for him. We have applied for admission into one of the Magnet schools located in downtown Chattanooga, close to where I work. Admission is based on a lottery system and we may be placed on a waiting list, but would sure like to have him in a good school, located close to where I work (so I can take him in the morning).

6. Lastly, we ask that you pray that God will grant us the wisdom and clarity of thought needed to take care of not only Jacob's needs, but also James and ourselves.

May God bless each one of you richly and may He grant you the peace that passes all understanding.

Daddy BA

Home at Last

After part of three days and two nights on the road, we ALL arrived back safely in Chattanooga yesterday afternoon. The trip itself, even though long, went well and everyone stayed healthy. I know that Courtney and Jacob were especially happy to be back in their own home again after being away for 100+ days. Please rejoice with us and give thanks to the Lord for all he has done.

There are a few challenges that lie ahead for us and so we continue to ask for your prayers. The catheter situation did not work out for us or for Jacob, so the doctor agreed to let us keep the SP tube and "pee" bag in place for the time being. The plan is to return to Johns Hopkins in early January for another bladder scope. We may then attempt to catheterize his urethra again and go from there.

In the meantime, we do have a pretty rigid schedule we have to follow that involves everything from wound care to around the clock meds to stoma care. Here are a few specific items for which we seek your prayers:

1. The transition back to home life for everyone, especially Courtney and Jacob. This may sound trivial, but there will likely be an adjustment period for all of us.
2. Jacob's stoma - we have to probe it twice a day to prevent skin from growing over it. While this is a quick procedure, it is painful for him and rough on us. The doctors tell us that if the skin were to grow over the stoma, it will require a pretty major surgery.
3. Jacob's urination and SP tube - we had a slight concern last night that perhaps the tube was becoming clogged with particulate of some kind. With instruction from one of the doctors, we were able to flush it out and things seemed to start flowing again. Please pray that the SP tube will stay in and that "pee" will flow out as it should.
4. Jacob's wound care - he has two wound sites that have been slow to heal and require us to "burn" them with silver nitrate to help them heal.
5. Jacob's fluid intake - it is very important that Jacob drink plenty of fluids to stay hydrated and to keep things flowing through the SP tube
6. Jacob's medications - at present, he is taking about four different medicines, some every four hours, in addition to Tylenol and Ibuprofen. Some of these meds will continue for a long time and others will require that we gradually wean him from them to try and reduce the occurrence of withdrawal symptoms.
6. James - it is important that we not allow all of Jacob's needs to completely overshadow James. Also, please pray for us as we look for a school for James (he will likely enter kindergarten next fall).
7. Sleep for all of us - please pray that Jacob will sleep well at night. He continues to wake up from time-to-time and we cannot always tell what may be bothering him. It could be gas or could be something involving his bladder or some other type of pain. Please pray that we will have wisdom in knowing how to treat these episodes as they come up.

Again, though, we are so very thankful for your prayers throughout this journey in our lives. God had definitely used them to sustain us. Please give all praise to Him for the great things He has done.

In Christ Alone,

Daddy BA

Prayer Request

Last night, we again had difficulty "cathing" Jacob. This morning, we took him to the ER to see the Urologist on call. He was able to get it to work, but it was not nearly as smooth as it was a couple of days ago. We even tried using a smaller catheter, which helped a little, but it was still difficult and very uncomfortable for Jacob. So, the doctor put a catheter in to stay until Monday afternoon, when we will see Dr. Gearhart at his clinic.

We don't anticipate having to extend our stay at this point (we hope to leave Tuesday), but we do ask that you pray that the doctors will find a good solution to these challenges we've been having with the catheter. In addition, we also have to "probe" his stoma once or twice a day to help keep skin from growing around it. We discovered this yesterday when we had a clinical visit with the General Pediatric Surgery team.

Praise the Lord, for His love and faithfulness endure forever.

Daddy BA

Post Scope Update

We wanted to let everyone know that the bladder scope went well today (the wait to get in was much longer than the procedure itself). Courtney and I went into the Operating Room again to practice using the catheter on Jacob. It was much easier this time than it was before and we praise God for this. Jacob has a couple of appointments and follow-ups to go to between now and next Tuesday and then perhaps we'll be able to head home to Chattanooga after that.

James went to visit his cousins Ronnie and Joshua for the day (and effectively set up a triple team on his Aunt RoRo). James did get to go back to his preschool today here that he had attended throughout August and September. It was great for him to be able to attend again and see some of his friends at Uncle Ron and Aunt RoRo's church. We are so thankful for their willingness to allow him to attend.

Please pray for continued healing for Jacob and for Courtney and me as we administer meds and catheterize regularly. We are still a little nervous about the whole cath process in light of what happened before, but we know that the Lord is stronger and greater than any of these challenges. Likewise, there is nothing that we go through for which He does not also go through with us.

Praise be to THE King of all kings,

Daddy BA

It's Been Awhile - an update

Our apologies for not providing an update in awhile. The last week and a half have been a little bit wild and crazy. Last week, while James and I were back in Chattanooga, Jacob had a pretty rough week with bladder spasms and some general discomfort in his belly (and perhaps elsewhere). This resulted in a rough week for Courtney as neither were able to sleep very well. James and I returned to Baltimore this past Sunday and after several visits to various doctors this week and some slight adjustments and changes in meds, Jacob is sleeping a little better at night.

Jacob is scheduled to have his bladder scope tomorrow morning at 11 am. Please pray that everything will go well and that Courtney and I will become comfortable with the catheterization process once again. Also, please pray that we might be able to all head home soon. If things go well this time, we may be able to head home by the middle of next week.

We'll try to get another update in tomorrow evening after the procedure.

The Lord is gracious and merciful.

Daddy BA

Update from this week

Jacob's scope this past Wednesday went well. Thank you for your prayers. He did not have to be admitted to the hospital afterwards, and we certainly praise God for that. The doctors inserted a catheter that will remain in place until around the 29th of this month. At that time, he will have another scope done and we will again practice doing the catheterizing on our own. There may be one additional follow-up shortly after that and then by God's grace, we hope to come home.

I drove back to Chattanooga this past Thursday and will be working here and helping Gran take care of James. It will be great to have James here with me, but much more so when all four of us can be together again. Please pray that this will be soon. Please pray specifically for Courtney and Jacob as they remain in Baltimore during these next couple of weeks. Jacob continues to be on three medications and is being weened off of two of them. Please pray that he will not have any of the symptoms that can occur when coming off of pain medications and that he will stay well over the next few weeks. Please pray for Courtney, too, that God will grant her the strength she needs to care for Jacob and herself. I am thankful that we have family up there who live pretty close and can be an outlet for Courtney and Jacob to be able to get out and about. We thank the Lord often for leading us to Johns Hopkins and, despite all of the challenges involved, also allowing us to be in a place where we have family close by.

In addition to the things mentioned above, please also pray that one of Jacob's pin sites will heal. This was the same pin site that we trouble with when the pins and fixater were still in and now that the metal is all out, the "wound" continues to have trouble closing up. When he had the procedure done this past Wednesday, they gave us some things to help treat this site because it has shown signs of infection. Please pray that it will heal quickly and completely.

One last thing for now, and this one is a praise. In about five more days,we will be able to remove the wrap from Jacob's legs and he can begin to put some weight on them. He has been moving his legs quite well since the pins were removed and we truly look forward to getting him "back on his feet."

"Open the eyes of our hearts, Lord, so that we can see you high and lifted up, shining in the light of your glory."

Daddy BA

A slight change in plans - prayer requests

Late Sunday afternoon and evening, we began having trouble catheterizing Jacob. He was in a lot of pain and we could not get the cath to go into his bladder. After two unsuccessful attempts, we talked to the Urology team and they advised us to bring him to the ER. They met us there and also attempted to cath Jacob and were also unsuccessful. The Urologist on call discovered that there was a "false entry" point that had been created slightly above the regular "pee" outlet. We are not sure how this occurred because we had been successfully cathing for several days. So, we have stopped cathing and are using the SP tube for now to drain his bladder.

Tomorrow morning at 9 am, Jacob is scheduled to go to the Operating Room to have another scope done on his bladder and also have a cath put in. This will remain in place for about two weeks and if all goes well here, we may be able to come home shortly after that. I plan to go back to Chattanooga on Thursday and help Melanie (Gran) take care of James (they returned to Knoxville this past Sunday). I will then come back up towards the end of the two week period.

Please pray for Jacob tomorrow as he undergoes this procedure. Please also pray that he will begin "peeing" through the correct path and that he will continue to heal from his previous surgeries. One of his pin sites (where the pins used to be) has shown some signs of infection, so please pray that this particular site will heal as well. We are thankful that he has been very cheerful since his initial release from the hospital and has been a absolute joy to see his vocabulary and personalities both begin to really develop.

This slight setback is definitely a little frustrating for us, but we are confident in knowing that the Lord works all things according to His good will and continue to pray that He will be glorified.

"His name is Wonderful, Jesus our Lord."

Daddy BA

Elvis (Jacob) has left the building (hospital)

We are so happy to report that as of Friday afternoon, Jacob was released from the hospital. He has a follow-up appointment with his Urologist on Tuesday morning, and then our plan is to hit the road and head for home. Jacob was absolutely thrilled to get out of the hospital. We rolled him to the house where we are staying in a stroller and he had a huge grin on his face the whole time. Thank you so much for your faithful prayers to this point. After just over 10 weeks in the hospital, we are so thankful to be close to returning to Chattanooga. We thank the Lord for his abundant grace and mercy that He has displayed during this time.

Jacob will require some "extra" attention over the next few weeks. We will be catheterizing him every four hours or so and continue to use the SP tube in between. The SP tube will remain in him as a back up for about the next two weeks. Please pray that Jacob will gradually gain more control over his urination and be able to begin voiding some on his own, so that we can feel safe in removing the SP tube.

In addition, Jacob will be taking four different meds for the next few weeks, two of which will require us to follow a weaning schedule. Please pray that we will be diligent in keeping up with his meds (we gather from his expressions that some of these do not taste all that good).

Also, Jacob's legs will have to remain wrapped for two weeks before he can begin any sort of weight bearing activities. He is able to bend his knees, but his legs must remain together (outside of cathing and bathing). He is gradually regaining strength in his neck, arms and back. As expected, these areas are fairly week due to the length of time he was on his back. Please pray that the overall healing process will go well and that, but God's grace, he might be able to walk before long. He will begin physical therapy after the two week "wrap" period is over.

Papa, Gran and James left today, heading for Knoxville. Please pray for safety in travel for them. Our travel plan is to leave Tuesday after the appointment and arrive back in Chattanooga either the same day or on Wednesday. Please pray for Jacob as he has not traveled well following his last couple of hospital stays. Also, Mommy CA and I will be driving separately (two vehicles), so we especially covet your prayers for this "last leg" of the journey.

To Him who is able to do (and has done) more than we can ask or imagine,

Daddy BA

Say Goodbye to the Pins and throw in a surprise

After 10 weeks of pins, a fixator and traction, we were finally able to officially say goodbye to them today. They were removed as part of a procedure that also involved a second scope of his bladder. I'll speak about the scope in a few moments, but wanted to let everyone know that Jacob looks great without all of the metal in/on him and what a joy it was for us to be able to hold him in our arms again. He seemed to really relish the moment and did want to be put back into his bed. The entire procedure took about an hour or so, with an additional hour of recovery. Jacob has typically come out of these procedures and surgeries a little groggy and cranky, but not this time. He was about as happy as we've seen him in quite a while and his Mommy and I definitely shared in this joy with him. Please take a moment to praise the Lord for all He has done for Jacob through the skilled hands of the doctors and nurses here at Hopkins.

Now, as for the bladder scope, it revealed that there is basically some scar tissue that has blocked his urine from properly passing through his urethra. Dr. Gearhart and his team brought Courtney and me into the Operating Room to show us how to catheterize Jacob. He had mentioned to us that this was a possibility, so it was not a surprise when we were called to go back, although we really didn't know what it might involve. However, as soon as we arrived, we were greeted with a most pleasant surprise. Dr. G said something to the effect of, "I believe this boy has some continence" (meaning that he has at least some ability to control the flow of liquid from his bladder.) This was absolutely unexpected and Dr. G noted that this is extremely rare in cloacal exstrophy patients due to the issues with their spinal columns and the associated nerves in that area. We do not know exactly what this may mean for Jacob in the long run, although there is a possibility that he may not need to have some of the bladder augmentation/catheterization surgeries later in life and may be able to begin training himself to do this at a slightly younger age than we expected. At this point, though, we are just so thankful to have the pins out and then on top of that, to really see the Lord choose to display His power, love and mercy before so many here at the hospital. We are reminded that nothing is impossible for our Lord, no matter how great the "odds."

Courtney and I will be responsible for catheterizing Jacob on a fairly regular basis, at least until he begins to exhibit a bit more control over this area. It is not a difficult task to actually carry out, but it is very uncomfortable for Jacob right now and will take some time before he (and we) get used to it. Please pray for us as we take on this new responsibility and pray that this indeed will get things flowing in the right direction and from the right place.

We will likely be discharged from the hospital on Friday and then have a follow-up with Dr. G next Tuesday. We may be able to come back to Chattanooga shortly after that.

We ask for your continued prayers as we get closer to the end of this particular journey in our lives, but also ask that you remember to thank and praise the Lord as well, for He has truly done great things.

May God and God alone be glorified.

Daddy BA

Quick Note regarding tomorrow's procedure

Just wanted to let everyone know that the scope and pin removal procedures are scheduled for 2 pm tomorrow (10/8). As these are both relatively minor procedures, the time may change (earlier or later), but this is the plan as of now. We are really looking forward to being able to hold Jacob again and also get one step closer to being discharged from the hospital. We don't know for sure exactly when he will be released, but it could be by the end of the week. We will likely remain in Baltimore, though, for a few days, especially until things are "flowing" well from his bladder.

Please pray that tomorrow's procedure's will go as planned, especially as it pertains to the bladder draining fluid properly. Pray for wisdom, clarity and skill for the two surgeons who are involved. And praise the Lord for all He has done for us during this challenging time.

We hope to update everyone sometime tomorrow evening.

All power, majesty and praise be to our Lord and King.

Daddy BA

Slight Adjustment in Plans

Jacob is now scheduled to have his pins removed on Wednesday, rather than tomorrow. The urology team was already planning a second scope of his bladder and so everyone involved agreed that both should take place together. From a pain perspective, this should work out better for Jacob because he will be slightly sedated for the scope and now also the pin removal as well.

Jacob has done quite well over the past couple of days, especially considering the episode of fevers, diarrhea and flu like symptoms he had last week. He has especially improved in the area of fluids. He is drinking very well and no longer requires an IV. Thanks for all of the prayers that have been offered up for this specific concern.

We will update everyone again once the pins are out. We expect this procedure (and the scope) to take place sometime around mid-day or so on Wednesday.

The Lord is faithful, gracious and merciful beyond measure.

Daddy BA

Praise

Please rejoice with us that the cycle of high fevers that Jacob has been going through for the past day or so has subsided. He has had a pretty good day today and has been eating a little and drinking well. The doctors are still evaluating some labs to try and determine what caused this episode, but it appears to be related to some sort of bacterial or fungal infection, perhaps in or around the larger catheter tube. Jacob is still dealing with some diarrhea and a "sore" stomach, so please continue to pray that these things will clear up soon.

I (Daddy BA) arrived early this morning from Chattanooga. I'm thankful to the Lord for safety in travel and the ability to stay alert for the long and late trip.

As it stands now, we are still on for his pins and fixator to come out on Tuesday morning, 10/7.

We give thanks with grateful hearts for all the Lord has done for us.

Daddy BA

Urgent Prayer Request

Please pray for Jacob. Courtney just called and is very worried about Jacob. His fever was over 103 degrees today. Now it is down to 100.2, but he is shivering and fingers are blue and she is very worried. There are no results from the blood work yet, but Courtney wants your immediate prayers for him. Please pray for Bryan as he is driving up here tonight.

Prayer Request

Over the past eight hours or so, Jacob has spiked a fever of about 101 degrees and has been fairly uncomfortable for most of the night. He has also lost his appetite and is not drinking much in the way of fluids. In addition, one of the incisions from his first surgery appears to have opened up a little, but we don't know exactly what may have caused this, yet, or what steps the doctors may want to take to address it.

I will be heading up tonight and plan to arrive tomorrow afternoon. Please pray that Jacob's fever might come down, that Courtney will have the strength she needs to care for him (help is on the way), and that I might have safety in travel.

Thank you for your continued prayers and may God be glorified through these circumstances.

Daddy BA

Update and Praise

Jacob just now came out of the procedure (scope) and Dr. Gearhart advised that the problem appears to be the result of some swelling in his bladder neck. He does not think it will be a long term issue and he inserted a catheter into his urethra to promote draining in that area. They then plugged up the main catheter tube that they had been using to drain his bladder up to this point.

The plan now will be for Dr. G to, if necessary, perform another scope next week after the pins and fixator are removed. He noted that he can't lift Jacob's legs up to get a "better" view now, but will be able to do so once the pins are out. The procedure itself didn't take more than about five minutes and Jacob is now in the recovery room.

Thanks to everyone out there who prayed for Jacob during this time and really to all who have lifted him up at prayer during the past eight weeks. Please rejoice with us that the procedure went well and it appears to be something that will correct itself over time.

To God be the Glory.

Daddy BA

Quick Update

Jacob is scheduled to have a scope done on his bladder today at 2:30 pm. It may happen sooner if there is an opening, but this is the plan as it stands now. Jacob has been a little fussy today because he has not been able to eat anything in the time leading up to the procedure. Please pray that the Lord will grant wisdom to the doctors so that they may be able to properly diagnose and treat this drainage issue.

Please rejoice with us that the concern we had with his stoma does not appear to be a problem. The doctors advised that it will sometimes retract inside and then come out again later. They checked it out and said that it appears to be working as it should and that they see no reason to take any further action at this time.

May we lean wholly on the Everlasting Arms, with the faith and strength that He alone provides.

Daddy BA

Prayer Request

We'd like to ask everyone to pray for Jacob. His bladder is still not draining properly and the plan is for him to have a scope done tomorrow morning to see what might be causing this issue. It will involve light sedation and is supposed to be a fairly short procedure. It does, however, involve a trip to the Operating Room.

In addition, Courtney noticed that his stoma has recessed into his body, although it is still functioning properly. We are waiting to hear from the doctors as to what this might be and will update everyone once we know.

Please continue to hold Jacob up in your prayers, asking that the Lord may glorified in these circumstances and that those around us might, through our words and actions, see God's great faithfulness at work.

Daddy BA

Fun things to do while laying in bed.

Color on this cool thing Ms. Tara made me with velcro and a step stool.
This is fun

What is this hanging over my head.
I really like this. Thank you Ms. Tara

I'm sorry the pictures are all backwords, but while Jacob is asleep I'm trying to get as many in as I can. Love to all

Daddy and Mommy saying a prayer for Jacob and telling him how much we love him.


Waiting for Jacob to come out of surgery
Here he comes

Jacob outside the OR doors holding Gran's phone.
Daddy getting his kisses
Mommy getting her kisses

Everyone is getting me ready to go for my second surgery. Dr. Liz is the silly one in this picture. She just loves Jacob.
Zinkham Team loves Jacob. A picture of them and Jacob will be published in a Hopkins magazine sometime. I'm still looking for a copy.
My nurses are getting me ready to go.
The team is here to take me to the OR
To the Blalock building where the General Operating Rooms are. We didn't get out of bed at this time so Jacob loved going for the ride. He would point out everything on the way there.

Jacob loves to get a bath and get his head washed
I love brushing my teeth. Don't I look cute in this head piece?
Hey mama, where did that silly cap go?
Thanks for the comb.

Prayer, Praise and Update

We ask for your prayers Jacob as his bladder is still not draining properly. The doctors have tried several things over the past few days, some with temporary success, but still not where he needs to be. The main catheter tube is still in, so there is a place for the fluid to go (it is not "trapped" inside the bladder), but he should now be draining through his urethra opening. If he does not begin draining soon, he may have to have a scope done to see what may be causing this to happen. This will involve a trip to the OR and light sedation. We would love for this to correct itself on its own and not require the trip to the OR, but we know that the Lord will work through this situation that which pleases Him. Jacob is still coughing some and still dealing with congestion, so we seek your prayers regarding this as well.

We do have some praises to report, though. Jacob's fluid intake has increased greatly over the past few days, which is certainly an answer to so many prayers. Also, he had an "ultrasound" of sorts last week, which revealed that his bladder is capable of holding a good amount of liquid. This is also a praise because it may improve the success of future surgeries (not likely to occur for several years) that he has in this area which will possibly allow him to have greater functionality and control over his bladder. In addition, we've also noticed that even at such a young age, he seems to be aware of when he needs to "go" and while we don't know exactly what all of this means right now, we still praise God for this encouraging indication of progress.

On a final note, the orthopedic surgeon came in and confirmed that his plan is to do an x-ray on 10/6 and remove the pins on the morning of 10/7.

To the glory of the Great I Am,

Daddy BA

Thought you might want to see the view from Jacob's first room. We are now in our fourth room and I love this one because I have a desk to sit at and post pictures. We had roommates in the other rooms and I didn't have much room to work since I brought the house with me.

The Dome
On the third floor there is a Play Deck on the roof for children to play

Isn't this beautiful? At this time I was wishing to be outside with my boys.
Can find James? I put a sign in the window with his name on it so he could find us.

More pictures from mommy

Papa A and Grammy with Jacob
Papa A and Grammy with James on the Play deck
Aunt Roro and cousin Ronnie with Jacob
James and cousin Ronnie playing with the bubbles. Jacob loves this.

Aunt Roro

Uncle Ron

Aunt Roro and cousin Joshua
Granny showing Jacob how Curious George takes his medicine.
Papa loving James
Papa loving Jacob

Yea, Mommy got new but old pictures on the blog.

Daddy, Mommy and Jacob after first surgery
James making sure Jacob is ok
Big brother giving everything will be okay kisses
Papa and Gran sitting with Jacob

An additional prayer and praise for today

Please pray for Jacob as he has been diagnosed with para flu. This seems to explain why he has had a lingering cough now for awhile. It is a viral infection, which basically has to run its course, so we pray that he will heal soon and that there will be no delays in his recovery.

On a separate note, there was talk that Jacob would be released from the hospital, but still have his pins and fixator in. Courtney and I were very concerned about this for a number of reasons. However, one of the pediatric doctors, who has been a tremendous advocate for us, has worked it out to where Jacob will not be released from the hospital until the pins come out. As of today, we are still looking for that to occur on 10/7. Our praise is that we did not have to have the additional "stress" of trying to care for him while these pins remained in. We certainly are eager to have him out and able to come back home to Chattanooga, but not with all of the "metal" still in.

To Him, who leads us by power,

Daddy BA

Mid Week Update - Prayer and Praise

We praise the Lord that yesterday, Jacob's two stints (tubes) were removed, leaving only the main catheter tube still to come out (he also has a ureter tube that will soon be his primary means for urination until later in his life). The plan is for him to have an Ultrasound today to examine his bladder and see how things are going there.

We also rejoice that Daddy BA has graciously been donated an additional 10 days of vacation from his Employer. This is truly a blessing from God and will hopefully permit me to go back up to Baltimore here shortly and stay there until we can all come home.

Please continue to pray for Jacob, especially with regard to his fluid intake and the cough that seems to be lingering a little. Also, please pray for Mommy CA as she has been at the hospital every night this week and is pretty exhausted. Also, please lift up James and those who are sacrificing to help take care of him (Gran, Aunt RoRo and Uncle Ron).

May the Lord be glorified in these things and may that be the ultimate desire of our hearts.

Daddy BA

Prayer and Praise Update

Daddy BA arrived safely back in Chattanooga last night and plans to work this week before returning to Baltimore. Just before I left yesterday, though, we got a call that the main catheter tube that runs into Jacob's bladder had come out. We ran down to the hospital and one of the Urologists on call was able to successfully put it back in place. There was a small amount of pain involved for Jacob, but we rejoice and praise the Lord that he did have to return to the Operating Room. Today, we received some additional good news from the Urology team. They think that they may be able to remove all of the additional tubes that go into Jacob's bladder and kidneys (a total of three) sometime this week. He will then be down to one tube that will remain in place for urination purposes. We certainly praise God that we are reaching these "milestones" in the recovery process. Also, as it stands now, the pins and fixator are scheduled to come out on 10/7 and we hope to be able to come home (all of us) shortly thereafter.

We do ask that you continue to pray for all of us, specifically for Jacob, as he has again developed a pretty bad cough. Even with the cough, though, we are thankful that he has begun drinking more fluids now and the doctors have taken him back off of the IV fluids.

It is great to see that the end of this journey in our lives is almost in sight. The Lord has guided us according to his plan and used the prayers of so many to sustain us during this challenging time. May we continue to trust Him and lean solely on His strength, rather than our own.

Daddy BA

Quick Update

We appreciate everyone's prayers for Jacob over the past 24 hours. He seems to be doing much better today and just a few moments ago was singing, talking and eating some goldfish crackers. His fever is down and his appetite has improved throughout the day. We continue to ask your prayers for his fluid intake, though, as he remains on the IV's for now.


Jacob did get a wonderful wagon ride today with his Aunt RoRo and just like yesterday, he loved being out and about.

In Christ alone,

Daddy BA

Jacob goes for a ride and much more...

As has been the case with the past few updates, we have both praises and prayer requests to share with everyone. We praise God that Jacob has received permission to take short rides in a wagon (about 30 minutes each time). Basically, we remove the traction, pick him up and place him on some pillows inside of a big, plastic wagon. He has to stay on his back, but at least he can get out of his bed and see some different surroundings. His mommy and I took him on his first ride yesterday around the hospital. We stopped and checked out his picture that is on one of the hospital info boards (we let the pain management folks use his photo in one of their displays). Next, we took him by the large statue of Jesus that resides in the Dome (I think this was one of the original hospital buildings from over 100 years ago). Then, we rolled him outside the main entrance to the hospital, just far enough so he could get some fresh air. He seemed to be both happy and shocked at the same time. He seemed to really enjoy it, though, because he nodded "yes" when we asked him if he liked going for a ride. His Gran, who is staying with him tonight, has also taken him out for a short ride as well today.

We also need your prayers, though, because Jacob has developed a cough and sore throat, and also has spiked a pretty high fever. He has been placed back on IV fluids again because he still has not wanted to drink much. The doctors are running some blood tests to see what may be causing these things. Please pray that Jacob will recover quickly and that these things will not delay his overall recovery, which has progressed very well to this point.

On a similar note, we have received some information regarding the "next steps." Jacob is scheduled to have an X-Ray on 10/1 to evaluate his pelvic bones and see how well they are healing. We had thought it might be sooner, but the Orthopedic folks want him to keep all of his "metal" on for a full six weeks after the last surgery. So, if things look good, he may be able to get his pins and fixator out on 10/7. In addition, he will also have some of the bladder stints removed, although I don't know exactly when this will occur in relation to the above mentioned dates. He will then have his lower body wrapped up so as to limit his movement and allow for complete healing. We may be able to return to Chattanooga within a week or so after all of this take place. He will keep this wrap on for about a month or so. We imagine that after that, he will begin physical therapy to help him with his legs (and Lord willing, to be able to crawl and walk again).

We really hope to get some pictures out for everyone as soon as possible.

We cannot adequately express how thankful we are for the faithful prayers of so many.

Holy God to whom all praise is due, we stand in awe of you.

Daddy BA

A Sunday Update

Jacob has been quite active today, especially considering that he hasn't had much in the way of naps over the past couple of days. His appetite is pretty well back (he tore down some pasta w/meat and tomato sauce for lunch today). I was especially proud to see him eat this well since this happens to be one of my favorite activities, too. He is still struggling a little with his fluid intake, but so far, we've not had to go back on the IV fluids.

In speaking with his doctors, they have decided to schedule his post-op x-ray for the 23rd of this month. We would love for it to be sooner, and had thought it might be, but the docs want to wait until right at four weeks after the bladder surgery. We hope to know more about this by tomorrow. Thank you for all of your prayers regarding his pin sites. They all look quite good and appear to be healing nicely. All in all, Jacob has been doing very well, to the point where several of his nurses have commented on how quickly he has recovered. We know that this is only because of God's grace and mercy, demonstrated through the faithful prayers of so many. To Him be the glory.

On a separate note, we had some visitors yesterday. James and Jacob's Papa Frere has a twin brother that looks exactly like him. He and part of his family came up to visit yesterday to celebrate cousin Joshua's birthday, visit Jacob and to show off their new grandson. James, who absolutely adores his Papa, became immediately attached to Papa's twin brother, Robert. It was almost as if there were now two identical Papa's and James loved it. He was calling him Poppy. After a wonderful visit, Poppy and his family left to return to their home last night and then Papa Frere left this morning to travel back to Knoxville. James was quite sad and said something to the effect of, "Now I've lost both Papa and Poppy at the same time."

Please pray for Courtney today, though, as she is having some stomach issues. She had been sick this past week and was starting to feel better until today.

To our Lord and Savior, Jesus, who sustains us by His power,

Daddy BA

Update - a couple of praises and requests

We praise the Lord that Jacob is recovering well from what potentially could have been a bad bacterial infection. We were concerned that he might have to be moved out of his room and placed in "isolation" of sorts, depending on some lab results. But everything improved greatly today and all of the additional precautions that were put in place (having to wear gloves and masks in the room) were removed. Jacob has been eating well today and is particularly fond of one of his nurses, Ashley. He calls her "Shay, Shay". Please continue to pray that he will take in more fluids, though, as he still has not wanted to drink very much juice or Pediasure.

I arrived safely in Baltimore this afternoon and I appreciate all of the prayers for safe travel. I broke the trip up into two days this time and that certainly made the journey easier (but I was definitely ready to be here). Please pray for Courtney as she continues to battle a cold and cough and also a sore tooth. Pray that she will heal quickly and that the meds we've gotten for her tooth will do their thing.

To the One who leads us by His hand,

Daddy BA

Praise and Prayer Request

We praise the Lord that Jacob has been able to come off most of his pain meds and is not having to rely on IV fluids anymore. Also, he may be able to have an X-Ray this week to see about the possibility of removing his pins, fixator and traction (possibly as early as next week).

In the meantime, though, we also ask that you pray for Jacob as he has not wanted to eat or drink today and has had loose stool. When these symptoms appear, it is typically a viral infection of some kind, which clears up over time. Sometimes these symptoms appear when he is teething as well. Please pray that whatever is bothering him will clear up soon and that it will not lead to anything more serious. Also pray (especially) that he will start drinking fluids again and not have to be placed back on the IV.

May the Lord work through these circumstances that which pleases Him.

Daddy BA

Moving "up" and down the hall - an update

We rejoice that Jacob has been doing well this past week, so much so that he has been moved (as of yesterday) from the Intermediate Care Unit back into a regular room. The Lord has been so gracious to us in allowing Jacob to continue to make good progress and we know that He has used the thoughts and prayers of so many to glorify His name.

The doctors tell us that if his progress continues as it has, they may be able to do the post-op X-ray (to see how well everything has healed and to possibly remove the pins) in about three weeks. If this happens then, it will be about two weeks sooner that we originally expected.

We ask for your continued prayers for Jacob while he recovers. We also ask for your prayers for Mommy CA. While we rejoice that Jacob is now in a regular room, we also know that this requires that she be at the hospital most of the time, including nights, which can quickly drain you. Please pray that God will grant her strength and encourage her and lift her spirits during this time. Please pray for Melanie (Gran), Uncle Ron and Aunt RoRo, (and his Papa this week) also, as they continue to minister to us by taking care of Jacob's older brother, James. Pray that God will grant them strength and that He might bless them for the sacrifice they've made to help us with his care. Please pray for James, too, as this is no doubt difficult for him in many ways as well.

And lastly, I ask for your prayers for me as well. While back at home in Chattanooga, I have been blessed by so many, especially from our church. I've been given more food than even I can eat (some will find that hard to believe) and been so encouraged by their phone calls, dinner invitations, and drop-by visits. But it is tough being 650 miles away from my wife and two boys. I definitely look forward to being with them again next week. I plan to travel back up to Baltimore on Wednesday of next week.

Blessed be the Lord, God Almighty, who was and is, and is to come,

Daddy BA

Daddy and James walking to the car.

Daddy telling James he loves him and will be back soon.

A great BIG hug, neither one wanted to let go.

James and Jacob just chillin'

A statue of Jesus in the Dome

Mommy's Update

Can you believe I haven't written in a month? Daddy BA always writes to everyone and he's back home in TN. I miss him soooooo much and wish our family could be back together soon. I know James misses him too. He just breaks down and cries so hard when daddy leaves and it breaks my heart. I hold him in my arms and we watch daddy's car drive away until we can't see him anymore. Then we go back in the home and I hold him a little longer until he stops crying we say a prayer and then we do something that's distracting. As for Jacob, he knows daddy had to go to work, but he hasn't reacted like James, yet. Thank goodness, I don't know how much my heart can handle. So far so good, your prayers are working. I meet so many people here and I get to share our story with them and they always say "I would have never guessed that you are going through this difficult time, you have such a wonderful spirit." I always tell them I couldn't look or be this way if I didn't have God with me and everyone praying. I don't quite know what they are seeing, because when I look in the mirror I see dark circles and nappy hair.

Jacob keeps me very busy when I am at his bedside. I have tried many times to sit down at the computer and add new pictures, but he is right there saying "Mama" "Maaaaamaaaaa" the whole time. And of course he comes first :) He is doing so well. The nurses and doctors absolutely love him because he smiles and blows them kisses. Now what lady wouldn't want that. And the men, they love to get his high fives. Jacob has learned to say "Kiki" for nurse Karen, "Ashshe" for nurse Ashley, "doe" for go, "pay" for play, he has said purple, stop, potty, and so many others. He helps all the nurses out with the medical supplies they have to use on him. I'm so glad to see he still wants to learn. I heard some children regress when they go through something like this. The one thing he does hate, is taking his medicine by mouth.

I wish I could keep writing and tell you more, but it's 11:00pm and I need to get up to the house. Too bad I can't get Internet there or you would be getting tons of pictures.

With much love,

Mommy CA

On the Road...On the mend

Jacob continues to improve a little with each day that passes. Thank you again for your continued prayers. He has begun eating more solid foods again and his playful personality is also coming back. The doctors have reduced his pain meds as well, another sign of gradual improvement and healing. He, Mommy and Daddy BA played ball today. Jacob would toss a small football back and forth with each of us. He definitely has a good arm (he must have gotten that from his Mommy's side of the family - we have a couple of former collegiate football players on that side of our family). Jacob is still in the Intermediate Care Unit and will probably stay there for a while longer (perhaps a week or so, but we don't know for sure at this point). The nurses are taking good care of him here and he seems to have a good time with them as well. He managed to grab a bag of baby wipes tonight and pull each one out and toss it on the floor. I guess that football we had earlier in the day was now out of reach and so the wipes were the next best thing.

Please continue to pray for our whole family. Daddy BA will be driving back to Chattanooga tomorrow (Monday), so please pray for safety while driving. Please pray for Mommy as she looks after Jacob and also tries to spend some time with James. Please pray for Melanie (Gran), Aunt Ro Ro and Uncle Ron as they help take care of James. We are so very thankful that the Lord has brought us to a town where we have family that is close by.

What a privilege to carry, everything to God in prayer.

Daddy BA

On the move - an update

After two nights in the PICU, Jacob has moved back into more familiar territory. He is back on the same floor where he has been for the past few weeks, but instead of being in a room, he is in the Intermediate Care Unit. Here there are always at least three nurses in the room (he shares the room with five other patients). He has been recovering well and the doctors and nurses seem to have his pain meds working properly. Please continue to pray for his recovery, especially for continued healing around the pin sites from the prior surgery and that he might not have any bladder spasms. These spasms often occur during the healing process and are, from what we understand, quite painful.

On a separate note, Jacob's brother James went to preschool today with his cousin Ronnie and seemed to have a good time. We are grateful to the folks at Uncle Ron and Aunt RoRo's church for allowing James to attend twice a week. Also, we were glad to have a couple of friends from Chattanooga stop by on their way to PA for a couple of nights. It was good to see some familiar faces.

Through the One to whom all praise is due,

Daddy BA

Destination - PICU

Jacob is now safely settled in the Pediatric Intensive Care Unit. He is sleeping well and the pain meds seem to be doing what they are supposed to. He will probably stay here for about a day, depending on the level of pain medication needed to keep him comfortable. Thanks again to everyone out there who prayed for Jacob today. We rejoice that the surgery was a success. We ask for your continued prayers as he begins the recovery process.

Glory be to the Father, Son and Holy Spirit.

Daddy BA

Almost Finished!

Dr. Gearhart just came in to let us know that they are almost finished. They are stitching him up now and we expect to see him in about 10 minutes. Dr. G said that everything went extremely well and that he is satisfied with the results. He will be in the recovery room for an hour or so and then head to the PICU for a day or so before heading to the Intermediate Care Unit.

Through Him, who sustains us,

Daddy BA

Another update

Dr. Gearhart (the Urologist) came out for a minute to let us know that Dr. Sponseller was getting ready to begin his part in the surgery and that they found a benign (thankfully) tumor in his bladder that will be sent to the lab for analysis. Please pray that he will not sustain any nerve damage while the pelvic plate is being inserted (using screws). Also pray that the remaining steps in the surgery will go as planned.

Daddy BA

Surgery Update

One of the nurses just came in at 4 pm and said that things are going well. They have partially completed the bladder closure and now Dr. Sponseller and Dr. Lau will each perform their respective parts in the surgery (insertion of a pelvic plate and stoma adjustment). They estimate that the surgery will be finished around 7 pm. Thank you for your continued prayers.

To the glory of the Great I am,

Daddy BA

The Big Day is here

Jacob just went back to surgery about 30 minutes ago. He is sound asleep now and the procedure is underway. We rejoice that the surgery prep went very well and Jacob was in good spirits right up until the point where he was put to sleep. Please pray for all of the doctors and nurses involved in this surgery, that they might be alert and perform their respective functions using the talents given them from the Lord. The surgery may last most of the day, so please pray as you have an opportunity. We thank everyone for their prayers leading up to this point. We'll let everyone know once the surgery is finished.

To the glory of the King of kings,

Daddy BA

Our prayer requests before surgery

In the days leading up to Jacob's surgery (scheduled for next Tuesday the 26th), Daddy BA and Mommy wanted to pass along a few prayer requests:

1. Please pray that Jacob will stay healthy between now and the 26th and also that he will not develop any rashes.
2. One of the pin sites from his last surgery continues to look like it is not healing as well as the others. Please pray that the doctors and nurses will find the right medications, ointments and dressings necessary to help heal this area.
3. Jacob will have bowel prep on Monday evening. This process can be pretty rough, but is necessary to get him ready for the surgery. He will be limited to clear liquids during this time and knowing how Jacob likes to eat (most people will know where he got this from), we know this will be hard for him. Please pray that he will handle this period of time well.
4. The surgery itself is scheduled to start at around noon on the 26th and typically lasts about eight hours from start to finish. We'd love to have it start earlier in the day, and sometimes there are cancellations that will allow this to happen (the earliest start time is 7:30am) . Please pray that we might be able to start the surgery earlier in day.
5. Shortly after surgery, Jacob will go into the Pediatric Intensive Care Unit for perhaps a day and then will be transferred to the Intermediate Care Unit. He will remain in the IMC area for a couple of weeks (estimated). During this time, he will be heavily sedated so that he will not move around much. Please pray that the pain medication will work properly and that he will heal quickly.

Great is Thy faithfulness, Oh God our Father.

Daddy BA

Yay! Mommy finally added some pictures.

Just wanted to say "Hi." I miss and love each and every one of you.

Thank you for praying for me.

Just hanging out and eating.

I am having so much fun with this card. I keep opening and closing it.

I have learned to stick my fingers in my ears when I don't want to hear about it anymore.

I love talking on the phone. I mostly just listen.