To our Kiki

I'm still working on yours.  Almost ten years of amazing love from you...it's taking a little time to write.  We love you so much!!!!

Our amazing nurse

Liz three years ago you became part of our family.  You have loved, laughed and cried with us.  When we first had you as our nurse you were so quiet...you had no idea what kind of family God put in your life that day.  Boy were you in for a surprise.  I don't think you had ever seen so many inflatable's inside a hospital or the Children's House before.  You loved Jacob's Frosty the Snowman so much, that I wouldn't dare forget to bring him on this trip.  And of course Jacob wouldn't let me leave home without Frosty and Turkey, if he could he would have brought all the others.

You are an amazing nurse, but most of all, an amazing person.  And I'm so glad we have you!!!  Thank you for coming to see us on your day off.  I wouldn't know what I'd do if I didn't get a picture of you and Jacob with his inflatable's.  Thank you for taking care of Jacob.  But most of all, thank you for taking care of me!!  You were the calm in my storm.  You listened to my worries and then you acted on them faster than the beat of my heart.  What an amazing nurse!!!  Not only did you take care of our son, your patient, you took care of us.  Not an easy thing to do, I know for sure, but God gave you this amazing ability.  And I am so blessed and truly thankful He chose us to be a part of it.  We love you sooooooo much!!!

God sent a student

We always love coming back to see our Hopkins hospital family who take such good care of us while we are there.  We have grown into a huge family for almost 10 years now.  And our family continues to grow every time we come back.  This time God gave us a student.  One that we will never forget.  She fell in love with our son, just as fast as we fell in love with her.  Her NC accent was way better than our southern Tennessee accent, at least I thought so.  She becomes a nurse in December, but in my eyes...she was already one.  We love you Brooke.  Thank you for taking care of our son and thank you for wanting to be part of our huge family.  You have a beautiful soul!!  When God calls us back to our Hopkins family, I just know you will be there to take care of us again.  You are AMAZING!!!

Love you MORE!!!

Brooke called Jacob her Patrick Star (from Sponge Bob) and wrote his name on his water cup with measurements/times to help him get the amount needed.  He still gets a big smile on his face when we mention this to him.   

Close up with the special cup

Giving Thanks

We stopped off to thank the Jefferson County WV Sheriff department for going above and beyond the call of duty for our family.  Thank you God for the men and women who serve and protect us all.

Listen and obey

God told me tonight we needed to go down the street to the Northeast Market to get dinner.  All of us, not just Daddy.  We arrived 30 minutes before they close, so there were a lot of vendors that had already shut down for the night.  But God had one still open and waiting for us, Heavenly Hotdog Grill. Two young men stepped down from the counter while the others prepared our food. I was able to share a little about our trip and how God has worked miracles.  One of them asked if he could pray for us and then we all held hands and prayed.  Unbelievable experience, nothing we expected when God told all of us we need to go.  I wish I would have gotten a picture of them and wrote their names down, but we we're just so blown away from the blessings that poured out from them.  The one that came up with the recipe for the drinks....AMAZING!!!  You will see a picture of Jacob enjoying every one of them.  The strawberry with lemon lime twist is his favorite!!!  Thank you, Jesus, for these God loving, young men that He brought into our paths.  We are truly thankful and blessed that we were able to meet them.  We will see you next time we are in Baltimore.  Keep up the fantastic work that God has blessed you with.  To God be the glory in all that we do.

Jacob loved the fresh fruit drinks from Heavenly Hot Dog Grill and we gotta say, we agree with him.  Flavors include mango (2), strawberry tea, blueberry and pink lemonade.  As you can probably see, there is actual fruit floating in these drinks. 

The food was also fantastic.  Mac and Cheese, pulled pork and Collard Greens.  If you are ever in Baltimore, stop by the Northeast Market, about two blocks from Hopkins, and check out the Heavenly Hot Dog Grill - the food and the people. 

Faith and Free to Go

Jacob got a good report from Dr. Ahn and Kelly today.  We are cleared to come home and hope to start our trip back tomorrow morning.  Dr. Ahn was particularly impressed with how quickly he had started walking again, especially after not being able to do so for 70 days.  Thank you Jesus!!


Please pray that Jacob's back and legs (especially) will do well on the long trip and that we will arrive back safely in Chattanooga (please, Lord, no more deer encounters). 


Through Jacob's story and by faith in His name (faith that only He can grant), the Lord has demonstrated His power, grace, mercy and love over and over again.  By this same faith that brought Jacob and us through the storms of travel and surgery, we believe He can and will use it again to bring rain to put out the wildfires.  He tells us in His Word that if we have faith the size of a tiny mustard seed, we can move mountains.  Or in this case, bring rain that is not in the forecast.




1 Kings 18:41-45 ESV
And Elijah said to Ahab, “Go up, eat and drink, for there is a sound of the rushing of rain.” So Ahab went up to eat and to drink. And Elijah went up to the top of Mount Carmel. And he bowed himself down on the earth and put his face between his knees. And he said to his servant, “Go up now, look toward the sea.” And he went up and looked and said, “There is nothing.” And he said, “Go again,” seven times. And at the seventh time he said, “Behold, a little cloud like a man's hand is rising from the sea.” And he said, “Go up, say to Ahab, ‘Prepare your chariot and go down, lest the rain stop you.’” And in a little while the heavens grew black with clouds and wind, and there was a great rain.

I have faith that when we get home there will be a great rain, sufficient enough to put the fires out.

Trust in Him

Out and next Steps

Jacob was discharged from the hospital yesterday evening.  We made it back to the McElderry House where we are staying.  He was really motivated to get out of the hospital and did not want Inpatient PT.  His first night out went pretty well.  We will be working on taking steps today, using the walker, around the house.  He has a follow-up appointment tomorrow morning at 10 am with Dr. Ahn and we may be able to begin the trip home tomorrow.  Jacob will likely need extensive PT on an outpatient basis, but we should be able to arrange this at home.

Please continue to pray that Jacob's incision site will heal and that his legs will continue to get stronger each day.  Please pray that he will consume enough liquids, too, to keep the urology side of things in good order.

The Lord is gracious and merciful.

We will try to provide an update tomorrow morning, right after our appointment.

Mommy and Daddy

Here is Jacob sitting up saying, "Look, Mom, no hands."

Discharged today

Thank you Jesus.  Jacob was discharged today and he has a post op appointment Wednesday.

One Step at a Time

Praise the Lord!  Jacob has started to take a few steps using a walker.  If his progress continues and his fluid intake (minus the IV that came out last night) stays consistent, he may be discharged tomorrow.  Also, it is possible that we may not need to stay here for PT and can set it up on an outpatient basis back in Chattanooga.  Our follow-up appt with the surgeon is scheduled for Tuesday morning.

Rejoice in the Lord always.

Mommy and Daddy

The Turkey

God used an inflatable turkey as an incentive to help Jacob get out of bed and to bring smiles to many other children.  We have a remote control connected to it so Jacob can turn it off and on from his chair.  Well, tonight he wanted the motor on it to rest because it has been on for days.  So he told us that  he wanted to get up and go turn it off.  This surprised us because he was so exhausted from PT this morning and afternoon.  But he did it!! 

Thank you Jesus!!

Just happened

Jacob's IV came out so trying to get other side to work.

Ohhhhhhhhhhh Noooooooooooo

Some rough patches, a few potholes and then a smoother road

The last 24 hours have had their share of ups and downs.  Jacob has been dealing with a lot of itching from his pain medicine (we've learned that morphine is the worst for him), low output and leaking from his continence stoma (along with very dark urine) and a major rash on both cheeks that was spreading to his ears and neck. 


Our challenge is that Jacob's condition involves three major disciplines - urology, neurology and orthopedics (along with general pediatrics).  In most cases, though, only one of the three disciplines is taking the lead, based on the type of surgery he is having.  This time, it is Neurology.  However, if something goes wrong with one of the other two areas, it can be quite challenging, especially at night, to get action taken. 


We became concerned yesterday evening with the urology side of things due to the output and color.  At the same time, we were trying to figure out how to stop the rash from spreading.  Jacob was most concerned with the itching and pain meds while Mommy and Daddy were concerned with the pee. 


Sleep was almost non-existent last night as both of us stayed at the hospital, wanting to make sure that we didn't miss the Neuro team so they could connect with urology.  Despite the rough night, though, the Lord began smoothing out the rough spots today.  The pain team came by and were able to change him to a new medicine (Ketorolac/Tordol) - which greatly reduced the itching.  Jacob has been able to slowly raise his  bed - 10 degrees each hour until he reaches 60 degrees.  As of the writing of this, he is at 45.  We are still concerned about the Urology side of things, but a member of that team is expected to stop by this evening.  We were also able to irrigate/flush quite a bit of crud out of his bladder and we pray this will help with the urinary issues.   


At one point, after starting this new pain medicine, Jacob said, "surprise" and started moving his head back and forth rapidly and lifting both of this arms.  This was after not wanting to move at all - saying everything hurt and asking us to help him gingerly move a half inch at a time, just to try and roll to his side.  Our jaws dropped and we couldn't believe what we were seeing.  Dr. Ahn stopped by a little later and was also amazed.  Initially, they told us that Jacob would not be discharged from the hospital until Tuesday and then at that time, he would be looking at the possibility of Inpatient Physical Therapy at Kennedy Krieger. However, after seeing his progress, Dr. Ahn said we might be discharged from the hospital - to either Inpatient PT or better yet, to Outpatient PT - meaning we might be able to start heading home on Tuesday or Wednesday. 


As for the rash, after initially thinking it might be fungal, two members of the Dermatology team came by and believe that it is a contact reaction/allergy to something he had during surgery (maybe tape or detergent).  It is now being treated with a topical steroid.


There is still a great deal of uncertainty concerning his release, PT and ultimately our return to Chattanooga.  But we must rest confidently in knowing that there is no uncertainty with our Lord and HIS sovereign plan.  Everything will ultimately be used to bring glory to HIS name.


Even though this has been one of our more trying trips, especially in light of the events that occurred on the way up, we are amazed at how many people the Lord has brought us into contact with during our first week here.  In addition to new doctors, nurses and hospital staff (and a fair number we already knew), we've met policy officers from Jefferson Co, WV.  We've had conversations with multiple individuals from our insurance company and the Repair/Towing shop (where we said goodbye to the ole "family truckster.")  We met an Uber driver who took us to Enterprise (who actually said he would pray for us and our surgery), three Employees at Enterprise Rent-a-Car, the staff at the hotel where we stayed on the first night, a manager at the short term housing where we stayed the first three nights and our friend Ms. Teresa, who has been so great in terms of finding lodging for us when the Children's House has been unavailable.  We've also reconnected with a family that we shared a room with during our 2008 surgery (their son has the same condition as Jacob) and of course Kiki and Liz, two of our most favorite nurses (Kiki from past surgeries and Liz more recently). 


I'm sure there are others we've failed to mention and still others we haven't met, yet.  One of prayers, prior to any surgery or trip to Hopkins, is that the Lord will bring individuals into our path who may not know Him and then use our feeble words and actions to shine forth with the truth of HIS gospel.  


Well, with this trip, He has certainly brought many individuals into our path.  We continue to pray that He might use even us to accomplish HIS good purposes and that we might plant seeds that HE will cause to grow into a bountiful harvest. 


Mommy and Daddy

Some rough patches, and few potholes and then a smoother road

The last 24 hours have had their share of ups and downs.  Jacob has been dealing with a lot of itching from his pain medicine (we've learned that morphine is the worst for him), low output and leaking from his continence stoma (along with very dark urine) and a major rash on both cheeks that was spreading to his ears and neck. 


Our challenge is that Jacob's condition involves three major disciplines - urology, neurology and orthopedics (along with general pediatrics).  In most cases, though, only one of the three disciplines is taking the lead, based on the type of surgery he is having.  This time, it is Neurology.  However, if something goes wrong with one of the other two areas, it can be quite challenging, especially at night, to get action taken. 


We became concerned yesterday evening with the urology side of things due to the output and color.  At the same time, we were trying to figure out how to stop the rash from spreading.  Jacob was most concerned with the itching and pain meds while Mommy and Daddy were concerned with the pee. 


Sleep was almost non-existent last night as both of us stayed at the hospital, wanting to make sure that we didn't miss the Neuro team so they could connect with urology.  Despite the rough night, though, the Lord began smoothing out the rough spots today.  The pain team came by and were able to change him to a new medicine (Ketorolac/Tordol) - which greatly reduced the itching.  Jacob has been able to slowly raise his  bed - 10 degrees each hour until he reaches 60 degrees.  As of the writing of this, he is at 45.  We are still concerned about the Urology side of things, but a member of that team is expected to stop by this evening.  We were also able to irrigate/flush quite a bit of crud out of his bladder and we pray this will help with the urinary issues.   


At one point, after starting this new pain medicine, Jacob said, "surprise" and started moving his head back and forth rapidly and lifting both of this arms.  This was after not wanting to move at all - saying everything hurt and asking us to help him gingerly move a half inch at a time, just to try and roll to his side.  Our jaws dropped and we couldn't believe what we were seeing.  Dr. Ahn stopped by a little later and was also amazed.  Initially, they told us that Jacob would not be discharged from the hospital until Tuesday and then at that time, he would be looking at the possibility of Inpatient Physical Therapy at Kennedy Krieger. However, after seeing his progress, Dr. Ahn said we might be discharged from the hospital - to either Inpatient PT or better yet, to Outpatient PT - meaning we might be able to start heading home on Tuesday or Wednesday. 


As for the rash, after initially thinking it might be fungal, two members of the Dermatology team came by and believe that it is a contact reaction/allergy to something he had during surgery (maybe tape or detergent).  It is now being treated with a topical steroid.


There is still a great deal of uncertainty concerning his release, PT and ultimately our return to Chattanooga.  But we must rest confidently in knowing that there is no uncertainty with our Lord and HIS sovereign plan.  Everything will ultimately be used to bring glory to HIS name.


Even though this has been one of our more trying trips, especially in light of the events that occurred on the way up, we are amazed at how many people the Lord has brought us into contact with during our first week here.  In addition to new doctors, nurses and hospital staff (and a fair number we already knew), we've met policy officers from Jefferson Co, WV.  We've had conversations with multiple individuals from our insurance company and the Repair/Towing shop (where we said goodbye to the ole "family truckster.")  We met an Uber driver who took us to Enterprise (who actually said he would pray for us and our surgery), three Employees at Enterprise Rent-a-Car, the staff at the hotel where we stayed on the first night, a manager at the short term housing where we stayed the first three nights and our friend Ms. Teresa, who has been so great in terms of finding lodging for us when the Children's House has been unavailable.  We've also reconnected with a family that we shared a room with during our 2008 surgery (their son has the same condition as Jacob) and of course Kiki and Liz, two of our most favorite nurses (Kiki from past surgeries and Liz more recently). 


I'm sure there are others we've failed to mention and still others we haven't met, yet.  One of prayers, prior to any surgery or trip to Hopkins, is that the Lord will bring individuals into our path who may not know Him and then use our feeble words and actions to shine forth with the truth of HIS gospel.  


Well, with this trip, He has certainly brought many individuals into our path.  We continue to pray that He might use even us to accomplish HIS good purposes and that we might plant seeds that HE will cause to grow into a bountiful harvest. 


Mommy and Daddy

Rough start to the day

Jacob is having a rough morning.  They are changing his pain meds because he is itching so much on the one he is on now.  He has been crying, fussing and itching non stop since 6 this morning.  He just fell asleep.  Thank you Jesus, because he needs to rest.

Bath time and on to his side

Morning Update

Jacob had a pretty good night.  After several unsuccessful attempts, an IV nurse was able to draw his blood on the first try (using the fancy vein finding machine) - Praise the Lord.  He is still a little swollen and has some leg pain and itching (associated with the pain meds).  He remains on his stomach, but the doctor says he can go side-to-side today.  Tomorrow, if things go well, he will be able to roll over on his back. 


So far, his legs are both moving well and all in all, the Lord has given him a positive attitude throughout. 


Thank you for praying and lifting Jacob up before the Throne of Grace. 


Mommy and Daddy


Up next - We are known for Thanksgiving and Christmas Inflatables...

God's timing is everything

We made it back and Jacob didn't even know we were gone.  Thank you, Jesus, for that.  We hated to leave him and go so far away.  But now that is behind us and we continue to move forward with God's plan.  Can't wait to see what's next.  There is always an opportunity to share with others how amazing our Father is.

Jacob's IV isn't working to draw blood.  Please pray they will figure something out because he DOES NOT LIKE NEEDLES, IV's, meds, flushing... anything going into veins.

Three years

Three years ago, God gave us this van on our way to a surgery.  Three years later, while on our way to a surgery, God is leaving it here.  Thank you Jesus for giving us nine amazing safe trips to and from Hopkins.  We are truly blessed.  We are on our way back now to the hospital.  By the way, he is still sleeping.  He just woke up one time for a minute and asked "Where is mommy?"  Our nurse told him we went to the car and he went back to sleep.  Thank you all for praying.

Resting comfortably and highly medicated

The Van

Please pray for Bryan and I as we travel back to our van to gather all our belongings.  The appraiser called and said our van is totaled and that there is no rush for us to get our stuff, but to let him know as soon as we can go.  Bryan and I talked and said while Jacob is in the PICU he has a one on one nurse and will be ok until we get back.  Well as I was typing this we get a phone call saying they have a room ready for Jacob and they are moving him now to the children's floor.  We are an hour away from our car and can't turn back now, but we know God has all of us.  It breaks our hearts to leave him.  But we know it will be quicker for both of us to go and get it taken care of so we can get back and focus on his recovery.  To God be the Glory.

Good morning

Thank you Jesus Jacob did awesome thru the night.  After 1am he called out momma only once to push his pain button.  Before one, it was a little rough getting his pain under control, but that's normal.  Thank you ALL for praying.  It was and is amazing to watch God work.

In recovery

Jacob has arrived in the PICU.  He is in a good bit of pain, especially in his back, but it is being managed fairly well.  

He will need to lay on his stomach for two days.  We can move him on his side if needed to change colostomy bag and adjust catheter/pee bag. 

The incision site and stitches look good, but is pretty long.

Thank you again for praying. 

Mommy and Daddy

Out of surgery

Dr. Ahn just came out and the surgery is finished.  He feels like it went well and that Jacob's nerve function looks good.  The cord was definitely tethered and he removed a lot of the lypoma that was restricting his spinal cord.

Jacob is expected to be in the hospital until perhaps the weekend.  He will be in the ICU tonight and may transfer to a room tomorrow.  We have a follow-up appointment next Tuesday.

Thank you all for praying for Jacob and us - to God be the glory - and we ask for your continued prayers as Jacob recovers.

Mommy and Daddy

Update

We just received our latest update and the doctors expect to be finished in about an hour and a half (around 6 pm).

Thank you for your continued prayers and the many notes of encouragement on FB, by text and phone.

Despite the rough patches we've encountered over the past 24 hours, the Lord has used the prayers of His people to remind us that He is still on the throne - still has it all under control.

Mommy and Daddy

Two hour update

He is ok and they are still working.

He just went back

Trust in Him

A deer was standing in our lane last night.  We were on a two lane hwy and a car was heading towards us.  So God picked the deer instead of us and the people in the other car.  Thank you Jesus we all are ok.  We were two hours away from Baltimore, God sent us a policeman that drove us the rest of the way....AMAZING!!  More details later, but we have a rental now and heading to the hospital.

Saying goodbye to brother

Heading up

We are making our way to Baltimore via stops in Knoxville and Salem (VA).  We hope to arrive this evening.

The surgery is scheduled for tomorrow morning at 11 am, but we are to be there at 8:45.

We are thankful that the Lord has kept everyone healthy up to this point and we continue to covet your prayers as we travel today and prepare for surgery tomorrow.

We were unable to get into the Children's House, but are thankful for the Lord's provision of a room nearby and then the McElderry House lodging once Jacob is released from the hospital.

As of right now, they estimate 2-5 days in the hospital and a post op follow-up appointment on 11/15.

We are reminded of a children's song that really speaks powerful words and encourages us as we look ahead to this surgery:

"My God is so Big, so Strong and so Mighty, there's Nothing my God cannot do".

Mommy and Daddy

Update with Surgery Date

We received a call last week from Johns Hopkins and Jacob is scheduled for tethered cord surgery on November 7th.   They expect that he will be in the hospital for about a week and we will likely remain in town for another week after that, in case anything comes up. 


Jacob returned to school last week and has done pretty well so far.  We are thankful for the wonderful people that the Lord has put in his school to help accommodate his mobility issues, especially his principal, nurse, teacher and a few others.  Jacob uses an electric scooter to get around and we think that having this as his "legs" has been a huge motivator in him getting back into school. 


We ask for your continued prayers as we approach our surgery date.  A referral has been submitted to the Children's House so that we can stay there while we are in Baltimore.  Please pray that there will be an opening for us (we won't know for sure until about two weeks out from the surgery date).  Also, we are still treating a urinary tract infection for a few more days (with antibiotic).  As you all know, he has been battling these recurring infections for about a year.  Please pray that this one will clear up and that he will be able to avoid these in the future. 


We noticed that it has been awhile since we last posted any pictures of Jacob, so we will try to get some recent ones on here in the next few days. 


All praise be to the One was was, is and is to come, Jesus Christ our Lord. 


Mommy and Daddy 

Update from this morning - the Lord has given us a plan

Dr. Ahn reviewed the MRI's from 2007 and compared them with the one from this year.  He thinks he's found the issue causing Jacob not to walk.  Jacob's spinal cord is tethered, which we have known about since shortly after birth.  Under normal circumstances, the spinal cord would be protected by the spinal column.  In Jacob's case, however, the spinal cord extends down further than normal due to a lack of bone in that part of his back.  There are fatty tissues, called lymphomas, that end up restricting his spinal cord from moving freely, causing it to be restricted or "tethered".  This fatty tissue (or even just scar tissue in that area) will sometimes attach to the other normal fatty tissue in his bum, restricting his spinal cord from moving as he moves.  This restriction can play out in his mobility, especially in his lower legs and feet (but sometimes extending beyond that). 


In September of 2007, Dr. Jallo (Jacob's neurosurgeon at the time) removed the fatty tissue surrounding his cord, allowing it to become mostly unrestricted (remembering that it will always show some tethering in MRIs).  He also created a gap/separation between the two types of fatty tissue to help prevent scar tissue from bridging the two and again restricting his cord.  Over time, however, with growth and perhaps even from traumatic events (falls, jumping, or just being a boy), the spinal cord can again become restricted.  We think that part of the reason we missed this with earlier MRI's is because they were being compared with more recent images (2013 and 2016) instead of comparing the current ones with what it looked like originally in 2007.


In comparing the two MRI's from these years, the doctor thinks that the cord may again be restricted, but not necessarily to the degree it was in 2007 (at least not yet).  But because the spinal cord is the control center for the nervous system, even a slight restriction can cause mobility issues, like the ones Jacob is experiencing now. In 2007, Jacob was not even a year old, so it would have been much more difficult to notice significant changes in mobility.   Also - Jacob's pain has been primarily in his lower leg and toes, which the doctor thinks is another tell-tale sign of the cord being restricted. 


Dr. Ahn feels like Jacob will need surgery to correct this issue. This involves removing some of the fatty tissue surrounding the cord and using a Gore Tex type material to help recreate the gap between the fatty tissues and help limit restriction.  This will not guarantee that their won't be future issues, but should help keep the two types of tissue separate and allow the cord to move more freely, especially as Jacob grows. 


This was a very difficult surgery for Jacob and us, back in 2007, especially post-operation, but we are very thankful to have some answers.  The plan at this time is to wait about three to four weeks for the inflammation/trauma in his nerves to subside and then schedule surgery at that time.  In the meantime, we plan to head back to Chattanooga tomorrow.  Jacob will need to really take it easy over the next few weeks to allow for healing and preparation for surgery. 


Thank you for your diligent and faithful prayers throughout. While it seemed like quite an ordeal to find some answers to Jacob's mobility issues, we know that God's plan is always best - even when it doesn't match our's or isn't something we "like".  While here in Baltimore, we've been able to reconnect with another exstrophy patient who was with Jacob way back in 2008.  We also met a local family this morning while in the waiting area.  We are reminded that our Lord is always at work, even using difficult circumstances like this one, to spread His gospel and to bring glory to his name.  What more can we ask than that?


We continue to covet your prayers as we travel back home and do our best to keep Jacob's activity level to a minimum while also trying to ease him back into school again. 


In Christ alone, through the faith He provides. 


Mommy and Daddy

Morning Update

We met with Dr. G this morning and he reviewed all of the results from the day before.  He arranged an appointment with Dr. Ahn, our nuerosurgeon, tomorrow morning at 8:30.  He wants us to see if something may still be tied into the tethered cord.

Dr G also mentioned that sometimes these kids lose mobility and remain wheelchair bound.  He said we really need to treat the spina bifida separately from some of the other aspects.  He did, however, prescribe ditropan to try and help with some of the urinary issues we've been having.

Jacob feels stronly that it is the titanium bar and screws that are in his pelvis.  His Mommy and I sometimes forget that Jacob, now almost 10, can and should provide insight on what is going on when his body is hurting.   Dr. Sponseller will review the x rays when he returns next week.

So we are still not sure why Jacob can't walk and will determine what's next based on what Dr. Ahn tells us tomorrow.   We will also check for the results from the urine culture to see if anything there.

Thank you for your diligent prayers. 

There is Power in the Blood.

Mommy and Daddy

 

Still searching...

After many tests today, the doctors are still unsure as to why Jacob cannot walk.  Jacob has been released from the hospital for now and we are staying with a wonderful friend/former nurse of Jacob's.  We meet with Dr G tomorrow morning and hope to find out what to do next.  This is certainly frustrating, but we pray that the Lord will be glorified.

Leaning on the Everlasting Arms.

Mommy and Daddy

At Johns Hopkins - update

Jacob, Mommy and Daddy arrived safely at Hopkins last night and checked into the ER.  As of early this morning, all threedisciplines - urology, nuerology and orthopedic have seen Jacob.  None can find a conclusive link to the leg pain he has been having.  Neuro has ordered an abdominal MRI that will take place later today.  Otherwise, Jacob's pain remains a mystery.

Please continue to pray for answers and resultion to Jacob's  pain.  Also, all of our usual lodging places are full, so we'd ask that everyone pray for an opening.

While Jacob's leg pain remains a mystery to the doctors, we are thankful to serve a God who knows all things - nothing is hidden or surprising to Him.  We pray that He might reveal these things to us according to His good and perfect will.


Mommy and Daddy

Heading Back to Baltimore

Following the June surgery to remove a few bladder stones, Jacob had two really good months.  Other than some leakage from his continence stoma, he finished out his summer vacation and started back to school in early August. 


Then, at the end of August, we attended a family pool party where Jacob fell and seemed to hurt his leg.  During a routine check-up with his Pediatrician, earlier in the month, he had again tested positive for a urinary tract infection.  We checked with our local Urologist (the one who knew us from his time at Johns Hopkins) and he advised us to hold off on antibiotics unless Jacob was showing symptoms.  Since he was not showing symptoms, we held off, but when he started to lose mobility, we started it up again.  Towards the end of that week, Jacob was again feeling better so we attended another family birthday party where Jacob seemed to do very well. 


However, upon returning from the party (on Labor Day), he was again complaining about leg pain.  We continued with the antibiotic for the urinary tract infection, but after about seven days, he was not showing any improvement in his mobility.  We scheduled an appointment with the Urologist, who discovered a different infection in his bladder.  We started another antibiotic, meant to specifically target this UTI, praying diligently that this one would resolve his mobility issues.  As you may recall, he has had this cycle going on for about a year now.  After another week, his leg pain has not improved.  We had x-rays and a blood test this past week, but everything looks OK from those.  After consulting with our doctors here and calling Dr. G at Hopkins (and lots of prayers - thanks to the many who have prayed for us), we have decided to head back to Baltimore. 


The plan is to leave tomorrow morning (9/20) and take Jacob to the Emergency Room.  The reason for this is so that he can receive attention immediately and get admitted if necessary, rather than trying to schedule appointments (on Dr. G's advice).  As we prepare to leave, here are our primary prayer requests:


1.  For safety in travel tomorrow  - especially as their are reported gas shortages in various places from here in TN on up into VA. 
2.  That we will be able to quickly find some answers as to Jacob's mobility issues.  We pray that he will not need extensive surgery, although we know the Lord will be with us even if that is the case.
3.  That in the event that surgery is needed, Jacob's mobility will be restored.
4.  For the Lord's provision financially in terms of travel, lodging and meal expenses.  We hope to get into The Children's House for the duration of our stay, so we'd ask for prayers that a spot will be available for us.
5.  For James as he will be staying behind with Gran and Papa.  Please pray for them, too, as they take him back and forth to school, help with homework and prepare him for his two day SOAR adventure  (overnight camping trip) with his school. 
6.  For Mommy and Daddy, that we will rely totally on HIM to guide and provide for us.  This trip is a little different from some of others in that we really don't know how long we will be at Hopkins or what all Jacob will need to have done while there.
7.  Lastly, that we will be a witness to others who may not know Jesus as Savior, Lord and King.  He always puts these opportunities before us, whenever we are there, whether it be in the hospital or at The Children's House.


Thank you for your prayers and may God be glorified.


Mommy and Daddy

All done with a nice surprise

The doctor just came in and the stone is out.  In addition, as a wonderful surprise, he was able to remove the stone through the stoma without an incision.  

He should be released today and not require an overnight stay or an extra tube.  

Praise the Lord.

Mommy and Daddy

Surgery Day

Good morning.  We arrived at the hospital at 8am and Jacob is in the preparation area.  His surgery is scheduled to start at about 9:50 and last for about two hours (maybe less).  As of now, he will need to stay overnight for observation in the PACU, but could be released as early as 7 am tomorrow.

Thank you for your prayers.

Daddy and Mommy

Back in Baltimore 2016

After a year off from doctor visits and over two years since Jacob's last surgery, we have returned to Baltimore. As noted in the previous post (Jacob's timeline), he has a bladder stone that has been causing him (we think) to have recurring urinary tract infections. The stone is about 1 cm, which isn't huge, but isn't small. Our doctor in Chattanooga, Dr. Mullins, who also was a resident and fellow at Johns Hopkins, communicated directly with Dr. Gearhart to arrange for the stone to be removed while we were here for the picnic and doctor visits.

After an overnight stop off in Salem, VA (to see Bryan's parents and two grandmothers), we arrived in Baltimore this past Friday night. The annual Bladder Exstrophy picnic was on Saturday and we enjoy reconnecting with our cloacal exstrophy families (five in total - which sounds small until you consider that this birth defect only occurs in about one out of every 300,000 live births). We also celebrated 25 years of Dr. G being the Pediatric Urology Chief at Hopkins and 30 years of the BE Picnic. It was a great time.

Several of the families converged at the hotel (not planned) and hung out for awhile. Sunday, a few of us visited the Baltimore Zoo. Jacob especially enjoyed seeing the giraffes. Sunday night, we connected with Ms. Cathy, who was our long time Manager at The Children's House. It was great seeing her again.

Monday(yesterday), we had an appointment with Dr. Sponseller to check out Jacob's left leg and club foot. His report was generally positive and while we do need to try and bring Jacob's weight down a little, he did not feel like we needed surgery to address his club foot, at least not at this time. He thinks we can consider the serial casting process to try and increase mobility in his foot, but can do this in Chattanooga. It will essentially involve weekly casts that gradually stretch his Achilles tendon. This is not always successful, but would not require surgery. He also said that he didn't think we needed to see Neurology about Jacob's spine at this time. Overall, he seemed pleased and definitely wants to take a conservative approach, especially considering that Jacob will be having bladder surgery.

Today, Jacob had a CT scan at about 10 this morning. Thankfully, it required no sedation or dye and only took about two minutes. As an additional surprise/treat, we got to have lunch with "Kiki" (Karen), one of our most favorite nurses who has taken care of Jacob all the way back to his 2008 surgeries. Thank you, Lord, for these opportunities.

His surgery to remove the bladder stone is tomorrow morning at 9:30. We are to arrive at 8 am (which isn't as early as some of his previous surgeries). We aren't sure how long the surgery will last, but we do expect that Jacob will need to stay one night in the hospital. He, of course, doesn't want to have the surgery or stay in the hospital. He doesn't like the thought of an IV (not sure anyone does) and the general discomfort of coming off of anesthesia. However, we know he hasn't enjoyed the recurring infections and mobility issues that have been affecting him for the past few months.

As we prepare for tomorrow morning, we ask that you all pray for the following:

1. That you will grant the doctors success in accessing and removing the bladder stone.
2. That removing this stone will stop the urinary tract infections.
3. That he will be able to stop taking the daily antibiotics.
4. That his recover will be fast and that we will be able to head back to Chattanooga in the next couple of days. He is supposed to leave the hospital with a tube/catheter/SP tube in that we can have removed in Chattanooga.
5. That the LORD will be glorified through it all.

We also have a few praises:

1. For the encouraging report from Dr. Sponseller concerning his foot and leg.
2. While we were unable to get into the Children's House for the duration of our stay, we were able to get into one of the McElderry Houses, similar to where we stayed in 2008. These are much more reasonable that hotel rooms and are so close to the hospital. It is an entire house, too, so it gives us a feeling of home.
3. For the wonderful time of fellowship we've had with friends and the fantastic doctors, nurses and staff here at Hopkins.

We will try to provide updates throughout the day tomorrow.

Thank you for your prayers and support.

May God be glorified.


Mommy and Daddy

Something from the "Archives"

Back in 2010, Mommy and Daddy wrote our "Journey with Jacob."  It was intended to give everyone a look at Jacob's life between his birth in 2006 up until his two really big surgeries in 2008 (the point at which we really started posting in this blog).  We thought this had been lost, but the Lord allowed us to find it at just the right time. 

“Journey with Jacob” 2010

Jacob E. Arrington

Born 12/3/06 w/Cloacal Exstrophy (O.E.I.S)

 

The Arrington’s - Bryan, Courtney, James (5) and Jacob (3). 

 

            Our “Journey with Jacob” began in August of 2006.  Courtney was pregnant with our second child.  We went in for a routine visit to find out whether we were having a boy or a girl.  The technician performing the Ultrasound immediately noticed something out of the ordinary with our little one.  She called in Courtney’s primary physician and both agreed it had something to do with the baby’s bladder.  However, they felt that it was serious enough to where we needed to go see high risk doctors at Erlanger.  After weeks of additional office visits, ultrasounds and opinions, the doctors determined that our baby had an omphalocele (that is the “O” in the OEIS designation above.  More on the rest of it later).  This is a condition in which the abdominal wall does not fully form and certain organs are outside of the body at birth.  It is not extremely rare, occurring once in every 5,000-10,000 live births.  During these visits we also determined that we were having a baby boy.  We immediately began preparing for his birth, surgery and the estimated 4-6 week stay in the hospital. 

            Then, about six weeks prior to his due date, the Lord decided that it was time for Jacob to come into this world.  He was delivered at Erlanger via C-Section and sent to the NICU.  He weighed 4lbs, 8 oz.  The surgeon on duty evaluated him and then came back to let us know the scoop.  She advised that Jacob had something a little more complex than what we originally thought.  In addition to the Omphalocele, he also had Exstrophy of the bladder (meaning it was also outside of his body), Imperforate Anus (the plumbing was not where it should be and his pelvic bones were way out of place due to a 30-40% loss of bone mass and lack of development) and Spina Bifida (O.E.I.S).  In addition, he was also born with a clubbed foot (his left).  The surgeon advised that they had never seen this complex condition before and they determined that there were only two facilities in the US that were known for handling it – one was Johns Hopkins and the other was located in Seattle, WA (We later discovered that the facility in Seattle no longer specializes in this condition).   This condition occurs only once in every 250-500,000 live births, making it one of the most rare conditions in the world.  It is also one of the most severe birth defects where human life can still be sustained.  Throughout all of this, we constantly saw the Lord’s hand at work.  We actually have family near Baltimore.  And we must say that having them there has been a great blessing to us throughout this entire journey. 

            With the diagnosis and determination in place, our journey really began to “ramp” up at this point.  We got to spend 24 hours with Jacob and then he was flown, via medical helicopter, to Johns Hopkins.  Once again, the Lord was there.  The airline required payment in full before they could transport Jacob.  The amount was large - $15,000.00.  We only had about $9000.00 available on a credit card, but one of our church elders, who had come to pray with us and visit, had stayed a little longer.  He agreed to cover the remaining $6000.00 with his personal credit card and Jacob was on his way.  We were able to later reimburse him once we coordinated with insurance, but that situation was definitely stressful.  But He is good and He provides, according to His good purposes.

            Now, one of us could have ridden with Jacob in the helicopter, but Courtney could not be released from the hospital, yet, and Bryan decided to stay with her.  So, Jacob traveled to Johns Hopkins without us.  This certainly created some anxiety for us, but we knew he was in good hands all the way around.  About two days later, Courtney was released from the hospital and we were on our way to Johns Hopkins. 

            When we arrived, we immediately went to visit him in the NICU.  He was such a little guy and had all of these tubes, monitors, etc hooked up to him.  Words don’t really do this justice, so we have placed a picture of him on our blog.  We’ll provide that web address a little later.  He had his first major surgery that Friday (12/9).  During this surgery, they closed up the omphaocele (his intestines) and created an ostomy (stoma for his poo), but his bladder remained on the outside of his body.  One week later, he had a second surgery to correct/close a small valve (PDA) near his heart.  This was not a huge surgery, but certainly concerned us because of where it was located.  We did find out that this is not an uncommon procedure, and thankfully, it went very well.  We were also first introduced to Dr. Gearhart, who, along with several other doctors, have, by God’s grace, been a true blessing to us.    

            Jacob remained in the NICU for a total of three weeks.  He was released right before Christmas and we were able to share Christmas with some of our extended family there in the Baltimore area.  The Lord was again gracious and merciful to us in that we did not have to spend Christmas at the hospital.

            Upon returning home, we had quite a routine to follow.  You may recall that his bladder remained outside of his body, even after the first two surgeries.  This required us to keep saline and saran wrap on his bladder at all times, with a diaper over top of it.  His bladder basically “drained” constantly.  With a few weeks of returning home, he came down with RSV (respiratory virus) and had to be hospitalized for about a week.  He was not gaining weight, so the doctor put him on a special formula.  Thankfully, he liked it pretty well.  Since Jacob was born with a shortened colon that required an ostomy, he did not always absorb his food and nutrients very well.  In addition, whenever he gets sick, it seems to linger longer than normal.  He also becomes dehydrated much faster than a “normal” child.  This formula worked, though, and we are again thankful that the Lord led us to find it and also provided the means to be able to get it (it was quite expensive).

            Things gradually improved for us during the next few months.  We certainly had a good bit of help from our family and friends, especially Courtney’s Mom.  We went to see a doctor here in Chattanooga about Jacob’s club foot.   He recommended a procedure that involved placing a cast on his foot and then having him wear a bar for awhile between his feet.  This was a pretty rough time for all of his, especially Jacob, because the bar was very restrictive and had to be worn at night.  Sleeping was definitely optional during this time, for Jacob, Mommy, Daddy and Gran (Courtney’s Mom).

            The summer of that year (2007), we had gone to Baltimore for some office visits at Hopkins and to spend time with family.  While we were there, we noticed a small bulge at the base of Jacob’s spine.  Yet again, the Lord was there (as He always is).  We were able to get an MRI scheduled and determine that Jacob had a tethered spinal cord.  You may recall that one aspect of his condition is Spina Bifida.  Thankfully, his has been on the mild side, which, again by God’s grace, has permitted Jacob to walk.  However, the tethered cord would require surgery.  So, the surgery was scheduled for the end of August 2007.  We again made our preparations and decided that we would go up about a week before the surgery to visit with family and so forth.  However, the night before the surgery, Jacob began coughing.  When we arrived at the hospital the next day, he had developed a cold and could not have the surgery.  Thankfully, we were able to get it rescheduled for the end of September, but it was frustrating to travel up there, only to have to turn around and come back, then return again a month later. 

            Thankfully, the second time was a charm and the surgery was successful.  However, the recovery was quite rough.  Jacob developed an infection in his back at the site where the surgery was performed.  He had to be readmitted to the hospital and ended up being there (at the hospital or in the area) for a total of 27 days.  Even after he returned home, a nurse had to come in and treat these wounds for several weeks.  In the end, though, Jacob was able to walk and crawl fairly well, although his pelvic bone issues certainly restricted him a bit.

            As the year 2008 arrived, we continued to look forward to the “big” surgery.  After speaking with our doctors and some other families who had been dealt with this condition, we pretty well knew it was coming, but weren’t sure when.  The surgery would involve both the Orthopedic and Urology physicians.  There would actually be two surgeries that would need to be performed fairly close to each other.  The first would involve his pelvic bones and the second would be for the purpose of closing up his bladder (which was still outside of his body at that time).  The Orthopedic surgeon generally takes a conservative approach when it comes to these things and while we were anxious for his bladder to be closed, we also understood that the longer he was allowed to grow first, the better the chances for success, especially with the pelvic surgery. 

 

Just prior to the surgeries in July and August of 2008, we began using a blog to chronicle our Journey from that point forward.  For the “rest of the story”, please feel free to visit our blog (we typically update it only when there is a procedure, surgery or visit to Johns Hopkins or if an urgent prayer situation arises).  The website address is www.jacobarrington.blogspot.com.  While the majority of this journey has involved our younger son, Jacob, we have also had an adventure with our older son, James.  Just last year in August of 2009, he had two seizures, exactly a week apart.  He was diagnosed with epilepsy and has been on medication since then.   Thankfully, he has not had any significant seizures since that time.  In addition, we have finally been able to secure a visit with an Epilepsy specialist at Johns Hopkins.  

 

In June of this year (2010), we will be returning to Johns Hopkins for several office visits and a minor (hopefully) procedure for Jacob.  He has developed a concern with his stoma and so we don’t know if he will end up needing a surgery to correct this or not.  It basically has “prolapsed”, meaning that it is really protruding out from his body.  It still seems to be working properly, but is definitely a challenge.  The biggest concern right now is that he is going through a lot of colostomy bags, sometimes 2-3 per day (they used to last 2-3 days or longer between changes).

 

The Lord truly is merciful and gracious, through all of the ups and downs.  Despite his physical shortcomings, Jacob has developed a tremendous vocabulary.  He recently was able to “jump” a little and can even jog a little (in his own special way).

 

We have included some additional photos and even a “centerfold” picture of Jacob that appeared in a Johns Hopkins publication back in 2008. 

 

We thank you all for your continued prayers and this wonderful demonstration of love that you all have shown to us through your offer to assist us with our patio.

 

Through Christ Alone,

 

The Arrington’s

Jacob's Timeline 2006-2016

It is hard to believe, but we are in the 10th year of our Journey with Jacob.  For those who may not know his story (The Lord's story, told through Jacob), or wanted to fill in the gaps, we have prepared the following timeline:

Year 2006 – in the months leading up to Jacob’s birth, things were a whirlwind for us. When we went in for the 20 week ultrasound, the tech knew something looked different. They sent us to the high risk doctors where we had weekly ultrasounds and many different opinions from many different doctors.  They essentially were giving us worse case scenarios, but none of them really knew what was going on. The Lord was clearly at work, though, because as they were about perform a fetal surgery on Courtney/Jacob that could have significantly harmed Jacob, our sister-in-law asked for another Ultrasound.  Things looked differently this time and they did not move forward with it.  After that, Courtney asked to go back to her regular OB and wanted him to deliver this baby. 

December  –  Jacob was born on the 3rd, via C-Section, in Chattanooga, TN at TC Thompson/Erlanger.  Six weeks early and weighed 4 lbs, 8 oz.  Diagnosed with Cloacal Exstrophy, a severe and rare birth defect affecting only 1 in about 250-400,000 live births.  The surgeon on duty at delivery, in conversation with us, determined that Johns Hopkins was a hospital best suited to treat Jacob.  By God’s grace, we had family there, too (Courtney’s brother and our aforementioned sister-in-law). 

Within 24 hours, he was on a medical helicopter, heading to Johns Hopkins.  Mommy and Daddy stayed behind for two days so Mommy could recover enough from c-section to leave.   Huge help from our church - $15K had to be paid up front for medical transport.  Family in Baltimore checked in with Jacob in the days prior to our arrival. 

Three week stay in the NICU at Johns Hopkins.  Had omphalocele repair, colostomy bag added and PDA surgeries.  Released on 12/23/06, two days before Christmas. 

Had bladder exposed (outside of body) for first 18 months of life.  We kept it covered with Saline and Saran Wrap.

Year 2007 – this was the year that we really learned a lot about Jacob’s condition.   He would have his second major surgery and spend a fair bit of time in the hospital. 

January – got RSV and had to spend several days in the hospital (Chattanooga). 

February  – doctor put Jacob on special formula to try and “fatten him up”.  It worked well. 

February/March/April  – casting procedure on club foot, wore special shoes with bar between them. (ponsetti?), tendon cut, weekly shots with this procedure. 

June – while visiting in Baltimore, attending exstrophy picnic, noticed bulge in his lower back.  Was referred to and sent to see neurosurgeon, Dr. Jallo, had MRI and determined that he had tethered spinal cord (form of spina bifida) and needed surgery fairly soon. 

August – surgery scheduled for tethered cord, at the end of the month, but Jacob got sick just before and surgery was delayed one month.

September – returned to Hopkins for surgery.  In the hospital for about a week, but recovery was long due to “packing” the incision points on his back and trying to keep “pee” from spilling from his bladder and around to his lower back.  Required that we use a combination of male guards, diapers and women’s pads.  Had to bring in a Home Health nurse to assist with packing the incision sites.  Recovery took several weeks.

Year 2008 – Jacob recovered nicely from his surgery in 2008 and began to walk a little.  We continued to maintain his bladder, still outside of his body, as we had previously (using saran wrap, saline, and cover with diaper).  This would be a year remember, though, as he would have two of the most involved surgeries that accompany cloacal exstrophy patients and we would spend approximately over one fourth of the year in the hospital. 

 June – went to Baltimore for picnic and annual doctor visits.  Dr. Sponseller and Dr. Gearhart agreed that it was time for the “Big One” -  surgery that is.  Our 100 day stay in Baltimore would begin at the end of the followingmonth.

July – arrived at Hopkins for first of two major surgeries.  First surgery involved cutting his pelvic bones, inserting a titanium bar with screws, and putting Jacob in a traction style cast with pins inserted in his pelvis.  He wore this for approximately 6 weeks. 

August – Bladder closure surgery.  He remained in the hospital throughout this entire timeframe, which included respiratory illnesses, high fevers that really could not be explained and a lot of separation time for our family.

September  – pins removed, but some complications with bladder surgery. 

October – Spiked high fever, possibly UTI.  Bladder scopes done to see why bladder not draining well.  Attempted to cath and resulted in false entrance/opening in his skin.  Titanium plate in his pelvis had eroded surgically repaired urethra.  Multiple trips to Johns Hopkins ER. 

November – headed home to Chattanooga after 100+ days in the hospital.  Unable to resolve issue with bladder, so sent Jacob home with SP tube. 

Year 2009 – this was a very difficult year for us because the suprapubic (SP) tube had to be changed out monthly and was his only way of peeing.  The tube was basically a modified catheter with a “bubble” on the end that was inflated to help keep it in place.  It then attached to a urine bag on his leg, that he wore 24/7.  Having this in resulted in regular bladder spasms, which were painful for Jacob and required that he take medicine daily.  He also took a daily antibiotic to help reduce the chances of urinary tract infection. In addition, his ostomy (for poop) was very tight, resulting in us having the dilate it (basically stab/insert) it daily.  This was one of the most difficult things that Mommy and Daddy had to do, because we know it was very painful.  Even with medicine, Jacob would awake multiple times each night, as result of spasms, gas/colostomy issues or both.  Meds were Sulfatrim and Ditropan. 

January  – doctor visit with Dr. G and Dr. Lau.  SP tube to stay in and must be changed monthly in Chattanooga by Ped Urologist here.  Very painful for Jacob. 

February – stoma revision attempt scheduled, but decided that it was better to wait.  Must continue to dilate with metal rod.  Continued to do this and get SP tube changed out monthly throughout 2009 and into early 2010.

July – after playing outside on a slip and slide,

August – James has two seizures a week apart.  Starts meds shortly after that.  Kepra.  Two ER visits. 

Year 2010 – after a difficult year, the Lord gave us some rest in 2010.  Jacob would have his fourth major surgery at Hopkins.

January/February – Re-do of urethra and titanium bar surgery, this time successful (Thank you, Lord).  Also a stoma revision.   Spent about 7 weeks in the hospital/at Johns Hopkins. 

March – Stoma prolapsed, to the point where nearly 12 inches of bowel were “hanging out” of Jacob, in his colostomy bag.  Bag changes required daily, sometimes more often, and very difficult to change, cumbersome for Jacob. 

James was able to see eye/seizure specialist at Hopkins and thankfully advised that he was 95% sure that James would grow out of these before he turned 12.  Thankfully, he hasn’t had a seizure since April 2010. 

June  – appointment with doctors, another stoma revision scheduled.  Daddy BA shared Jacob’s story and God’s grace at the annual exstrophy picnic.

July – stoma revision surgery.  One week in the hospital.  Surgery did not take, so stoma again prolapsed. 

Years 2011/2012-these two years were fairly low key for us, comparatively speaking.  Jacob continued to grow, albeit slowly at times, and we continued to deal with the challenges of the prolapsed stoma.   He also started school (kindergarten).  Doctor visits were mostly limited to office visits, although Jacob did have to go to the ER several times due to dehydration.  Because of his short gut/bowel, he isn’t able to absorb water and nutrients as well and is therefore more susceptible to dehydration, especially from colds and viruses.

Year 2013 – during the summer between kindergarten and first grade, Jacob began to mention how he would like to be dry, like the other kids his age.  Up to this point, he wore a pull-up all of the time because his pee would just constantly drain out of the urethra that was surgically created for him in 2010.  We knew that the next major surgery for Jacob would most likely be a “bladder augmentation” surgery where Jacob would have a continence stoma added and then be able to use a catheter to pee.   While visiting the doctors at Hopkins this summer, we told Jacob that HE needed to tell Dr. Gearhart that he wanted the surgery, not just have us tell him.  So God gave Jacob the words and he told Dr. G – “I’m not leaving Baltimore until I have this surgery”.  While it couldn’t be scheduled right then and there, it was scheduled  for November. 

November 2013-January 2014 – continence stoma/bladder augmentation surgery.  Spent about one week in the hospital, but 60 days total in Baltimore for healing, removal of kidney stints, SP tube and training Jacob how to cath.  He also had a successful stoma revision surgery and no more pro-lapsed stoma.  **Lots of great detail and pics on our blog from this surgery. 

Years 2014/2015 – once Jacob recovered from his continence surgery, he was almost like a new boy.  No more diapers/pull-ups.  Jacob learned to cath by himself and several times asked why we didn’t schedule this surgery sooner. But we know God’s timing is perfect and that Jacob likely would have struggled if it had been any sooner. 

Jacob truly had a great year in 2014.  He was able to do so much more without the restrictions of wearing pull-ups and having 10 inches of bowel hanging out in his colostomy bag.

We knew, however, that there was still one aspect of his condition that we had put on hold.  That was his club foot.  The doctor recommended that we think about addressing it in 2014/2015, but we knew how much Jacob was enjoying his new freedom, so we held off. 

During the summer of 2015, Jacob started getting semi-regular urinary tract infections. We were thinking that they might have been the result of swimming because they almost always seemed to follow right after he was in a pool. 

Year 2016

As time went on, however, and as we began 2016, he started to lose mobility whenever he would have an infection.  For approximately three weeks in March of this year, he could barely walk and complained of dizziness.

We thought for sure that his tethered spinal cord was “coming back” (it is always there, but once his mobility goes down, it can reach a point where surgery is needed again). 

In March, we had an MRI, followed by an X-Ray.  The neurosurgeon at Hopkins reviewed it and advised that his spine looked stable, when compared to his last MRI in 2013.

Our focus then shifted back to the urinary tract infections.  An ultrasound was performed and reviewed by Dr. Mullins, an adult urologist here in Chattanooga who actually was a resident and fellow, under Dr. Gearhart, at Hopkins.  Oh how the Lord works in amazing ways. 

With the recurring infections, the thought was that Jacob might have a bladder stone.  An ultrasound was done and initially, and while they didn’t see a stone, they did see a lot of mucus and other “stuff”. 

In April of this year, Dr. Mullins performed a procedure to clean out Jacob’s bladder.  In the process, though, he did find a small stone.  We will be having another ultrasound in June and then plan from there.  Dr. Gearhart, at Hopkins, advised that we should wait on it for now.

During this same timeframe, we also began making plans to address Jacob’s club foot.  A doctor here in Chattanooga, who works in pediatric orthopedics, advised that we should see a specialist at Sinai Medical in Baltimore, next time we are there.  He said if he was treating him, he would do a weekly cast for two months, then perform a transfer surgery.  Our plan for now is to see Dr. Sponseller, Jacob’s ortho doc at Hopkins, when we go in June.  While minor compared to some of Jacob’s other surgeries, it does appear that correcting the issues with his club foot and left leg may be more complicated than we originally thought. 

But through it all, the LORD has it all.