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.

Update - prayers, praises and news

We were concerned this morning to find what appeared to be bed sore forming on his lower back/rear end. The skin had a bluish color to it, which is often a sign that something is starting to form. The doctors and nurses began to aggressively treat it through a number of means, and a few moments ago we already noticed improvement in the area. We praise the Lord for the wisdom and discernment that He granted the doctors and nurses here which enabled them to act quickly. Please continue to pray that he will not develop additional sores and that we will be able to keep him dry in the days that lead up to the next surgery. Also, please pray that the pin sites located on both of his hips will heal and not develop any infections. Two of the six pin sites have been very irritated lately and show some signs of possibly developing an infection.

Speaking of the next surgery, we found out today that the date has been moved up another day to the 26th. We have been praying that his surgery might happen sooner rather than later, for a number of reasons, but mostly because Jacob seems ready from a physical standpoint. We also understand that the recovery period after this next surgery could be anywhere from 6-8 weeks and so we'd love to get this final phase (Lord willing) underway.

Please continue to pray for our family as a whole. As you can imagine, there are many details involved in being so far away from home for such a long period of time, but the Lord has been so very merciful to us and we certainly feel that He has used your prayers, gifts and words of encouragement to bring glory to His name.

To God be the glory, great things He has done.

Daddy BA

Saturday morning update

We rejoice that Daddy BA arrived safely last night from Chattanooga at about 5:30pm. It had been a very busy day for Jacob as he been running a high fever and was not wanting to eat well. The doctors think he may have an ear infection, so he is receiving an antibiotic for for this. In addition, we are still treating some rash areas on his body and the thrush in his mouth. Last night his fever would spike up and down and his heart rate was elevated at times. This morning, however, he seems to be feeling better. Please pray that whatever has been causing his fever and elevated heart rate will subside shortly.

Dr. Gearhart (pediatric urologist) did come by and visit with Courtney on Thursday and we have a tentative surgery date of August 28th for the bladder closure. Please pray that this might take place as planned (or sooner would be great) so that Jacob can begin the extensive recovery period that typically follows this particular surgery.

We want to praise the Lord that Jacob's Papa also arrived safely yesterday from Knoxville. Today is Ronnie's 3rd birthday (Jacob's cousin), so we want to wish him a very Happy Birthday.

This morning has also been very busy for Jacob. The nurses have given him extra attention today in order to change all of his dressings, bedding, etc. They just now finished and I think he is thankful to just be able to watch his videos and wait for lunch to come.

To the glory of the King of kings,

Daddy BA

Quick Update and Prayer Requests

Jacob has been doing fairly well this week, especially once his appetite came back. We are currently waiting for Dr. Gearhart (Pediatric Urologist) to come by so we can find out when the bladder surgery might take place. Once we know this information, we will let everyone know.

Please pray for Courtney that she might be able to get some much needed rest this week while Daddy BA is back at work. Also, please pray that Courtney might be able to borrow a laptop computer to use while in the hospital (primarily for providing updates to the blog and sending/loading pictures to share).

To Him who supplies us with mercy and grace beyond measure, according to His will,

Daddy BA

Praise and Update

The nurses treated the thrush infection in Jacob's mouth with nystatin (same med used to treat the rashes he had last week) and his appetite has begun to come back. Please rejoice with us and praise God for such a quick resolution. It appears that a feeding tube will not be needed at this time.

Praise God from whom all blessings flow.

Daddy BA

Prayer Request for Jacob

Please pray for Jacob today. He has been doing quite well over the past week with regard to his eating and drinking. Today, however, he has not wanted to eat or drink anything and he has what appears to be thrush in his mouth (an infection). The nurses will be treating this infection, which certainly may be one of the reasons why he is not eating well. He has also been teething recently and this may be contributing as well. Children with OEIS can dehydrate quickly when they are not drinking any fluids (we've seen this happen with Jacob in the past), so we are always concerned when this happens. Also, the nurses have gone back to giving him pain meds every 6 hours rather than every 8 hours and have increased the amount of fluids through his PICC line. If things continue like this, the doctors may need to insert a feeding tube to ensure that he gets the nutrients and sustenance that he needs.

In addition, we hope to find out today (perhaps) when his next surgery (bladder closure) will take place.

Thank you for your continued prayers.

May the Lord work through this circumstance that which pleases Him.

Daddy BA

Praises and Birthdays

We rejoice and praise the Lord that this morning, Dr. Sponseller (Jacob's ortho surgeon), was so impressed with the progress in Jacob's right foot that he was able to adjust the fixator and re-attach the tape that runs between Jacob's leg. His exact words were something like, "He has regained movement quicker than expected." This has been our biggest concern for the past week because regaining this movement likely means that we will be able to soon schedule his next surgery and not face the possibility of a re-do.

God truly does work in mysterious and unexpected ways sometimes and we know that His timing is always right, but it was especially meaningful to us that God chose to bring Jacob to this point today, because it also happens to be his older brother James' 4th birthday. His mom and I, along with his Uncle Ron, Aunt Rose, and cousin Ronnie will be taking James to a theme park to celebrate his birthday. His Grammy and Papa A (Bryan's parents) have been here this week and have been helping us out a lot by staying with Jacob at the hospital.

So, please rejoice with us but continue to pray for Jacob and our family as we continue on this journey.

Praise be to our Lord and Saviour,

Daddy BA

A Quick Update

This is Jacob's Aunt RoRo (Rose, Courtney's brother Ron's wife...for those of you who don't know)...Anyway, Courtney is having technical difficulties and asked me to give a quick update.

Jacob is ok. They started the new pain medication called Fentanyl, but it is still causing itching. He also gets Oxycodone by mouth and that seems to help. He's not relying on the PCA (pain button) as much anymore. Please continue to pray for pain control and the itching because it's still a bit of a trial and error experience and he's not as comfortable as he could be. He is starting to eat a little more which is good.

The doctors were in yesterday and this morning and there are still no clear answers on a plan or what to expect. Jacob really needs movement in that foot. God says pray specifically...so here's one...PRAY JACOB CAN MOVE HIS ANKLE! As you go about your day, just keep asking God for little Jacob's foot to move.

Bryan's parents arrived safely in town yesterday, hopefully they will get some quality time with Jacob and James.

Continue to pray for Courtney and Bryan, as they are very tired and this is very stressful on them. Everyone keeps asking what they can do to help. Earnest, heartfelt prayer is the best thing right now.

We know everyone loves pictures, so here are a few from Jacob's first birthday party. He turned 20 months just the other day!

Thank you Jesus

Jacob got his first dose of his new medicine and he is sleeping peacefully.

We will wait to see what the doctors come up with

Praise God the itching stopped around 2:00 this morning. Jacob and I got three hours of sleep before he woke at 5:00 am with some pain. I wish I could say it was good sleep, but the chair bed is not the best. Again I need to express how wonderful these nurses are because Karen (a nurse that came in to help lift Jacob) said she will bring us her twin air mattress from home tonight. She had bought it for a mom that was staying here for a long time too. Karen also got a hospital air mattress for Jacob. We are just waiting for the right time to lift him and put the mattress under him. She said anyone who is in the bed longer than three days gets this because it will help with bed sores.

Dr. S (bone dr.) came in at 6:00am and I told him Dr. Jallo (neuro) stopped by and said Jacob had a stretched nerve and the feeling would come back within a few months. I saw Dr. S's facial expression and then I said "but we can't stay like this for 3 months" and he said "no." He would have to get with Dr. Gearhart (urology) and Dr. Jallo and put their heads together to come up with something. He will get back with us and let us know what they decide.

Jacob continues to wake up often, due to the itching that is related to his pain medicine. The pain team just came by and we will be making a few changes. Jacob will receive his primary pain med orally every four hours. In addition, we will be changing the med that we use through the "pain button" to match one that he had back in the fall during his tethered cord surgery (the "pain button" is a little button by his bed that his mom and I are able to press when he needs a very small additional dose of medication to assist with pain or discomfort). We are also changing the "button" medicine to one that he was on when he had his spinal surgery. If we remember correctly, this one worked for Jacob and did not cause itching. Please pray that these changes will be effective in helping to relieve his itching. Also, please continue to pray that the Lord will restore movement and feeling to his right foot.

To God be the glory, great thing He has done.

Daddy BA and Mommy

To those who are up and can't sleep

Its almost 2:00 am and I'm putting out a prayer request to those of you who are up and can't sleep like Jacob. Please pray with me that this itching stops. All the nurses here are trying their hardest to get Jacob what he needs, but nothing seems to be working. He is doing the wiggle to try and scratch his back which causes his hips to move and he is not suppose to move them at all. I'm trying to type this quickly because if I take my hand off him he screams out mama. I'll let everyone know what happen.

Thank you all and thank you to the one who is up now reading Jacob's blog and praying.

Love, Courtney

Evening update - an afternoon with Gran and Papa

Jacob's Gran and Papa Frere came to sit with Jacob this afternoon. He calls them Nanna and Papa and we were glad to hear him actually say these words and "talk" a little more today. He has started to eat again and managed to take down some pears and even some meat sticks (his personal favorite). He also received his first bath today, which helped tremendously. He continues to struggle with the rashes and also the itching (likely caused by the pain meds). In addition, we still have not seen much movement in his right foot, but the doctors remain optimistic that the feeling and sensation will return in due time (or as we would say, in God's time).

With Gran and Papa here with Jacob, Courtney and I were able go spend some time with our older son, James. I played hide-and-seek with he and his younger cousin, Ronnie and we just hung out with them for the afternoon. We then brought James down to the hospital to visit his brother. Jacob was very glad to see him (he points to him and calls him "Bubba").

Have a good evening and thanks for your continued prayers.

Daddy BA

Morning Update - visit from the doctors

Jacob had a fairly peaceful night and slept really well for about four hours. There was a large thunderstorm that rolled through downtown Baltimore at about 4 am. We are on the 7th floor of the hospital and it was pretty amazing to see the lightning, rain and wind flash and blow over the tops and in between the downtown buildings. God's creation is truly a beautiful thing to behold.

This morning Dr. Sponseller came by to check on Jacob's right foot as well as the rashes he's developed. He, like Dr. Jallo, feels that the lack of movement in his foot is only temporary and was encouraged to see some improvement. He will continue to monitor this and perhaps begin to make some adjustments to the fixator in a few days.

About an hour later, two members of the Urology team, who will be performing his next surgery, stopped by to see Jacob. They checked out his rashes and advised that we should continue to treat them with the Nystatin cream, but that they will continue to follow his progress closely as we move toward the next surgery. So, far, we still don't know when the bladder surgery will occur, but most likely it will be the week of the 18th. We understand from talking to several of the nurses that we will truly be amazed at how Jacob will look after this next surgery. We also found out that he will be spending a fair bit of time in the IMC (Intermediate Care) facility after this next surgery so that his pain meds can be closely monitored.

Please continue to pray for Jacob's right foot, a slight cough he has developed, his rashes and that he will be able to begin eating more regular foods soon. He has been drinking plenty of fluids, but has not wanted much of his Pediasure. We will be trying some more solid foods as well.

Also, please pray that a spot may open for us to stay in the Children's House. We are currently staying in a nice townhouse that is very close to the hospital, but it is significantly more expensive.

We thank the Lord for the amazing skills and talents He has given to these surgeons, doctors, nurses and caregivers here at Johns Hopkins.

For His glory,

Daddy BA

Evening Update - visit from Dr. Jallo

Dr. Jallo, the neurosurgeon who performed Jacob's tethered cord surgery last year, came by to chat with us about the lack of movement in Jacob's right foot. After checking it out, he basically set our minds at ease and indicated that this has likely been caused by stretching of the nerves and muscles as a result of the traction (fixator) that is on his legs and that it is not likely to be permanent. He did note, though, that this can last for several months, and that we should continue to monitor it throughout the duration of his stay. Please continue to pray for this concern and also some "rashes" that have sprung up in several places and have caused him some discomfort (itching/scratching). Please pray for his mommy, too, as she tries to catch up on some much needed sleep this evening. Also, please rejoice that the PICC line has remained in place and seems to be working as expected. Jacob has also started to drink his Pediasure again (this has been a primary source of nutrition for him for almost a year, even though he does like to eat a few other solid foods.)

In Him,

Daddy BA

Afternoon update - post PICC line procedure

We rejoice that Jacob's PICC line was successfully inserted this morning. The procedure took a little over an hour and he is now resting back in his room. His mommy is also attempting to get a little rest, too, which is much needed. While waiting for the procedure this morning, we ran into Dr. Jallo, the neurosurgeon who performed Jacob's tethered cord surgery last fall. We mentioned our concern with Jacob's right foot, so he has agreed to stop by and check it out this afternoon. Also, it appears that Jacob's next surgery, the bladder closure, will take place in about three weeks instead of two, to allow time for any necessary adjustments to the fixator that is on his pelvis and to see if anything changes with his right foot.

Please continue to uphold Jacob in prayer, especially our concern over the lack of movement in his right foot.

In Christ, and Him Alone,

Daddy BA