Not just yet - prayer request

As we were preparing to leave this morning, we noticed that Jacob's stoma has again prolapsed out. The doctors a advised that we should meet them at the ER. We are here now, waiting to see what Dr Lau suggests. Outside of this, Jacob is doing quite well. He ate a little this morning and has been playing quite a bit.

This setback is definitely frustrating, but we are confident that God will work in and through even this that which brings glory to His Name.

Mommy and Daddy

Marching On

Jacob was released from the hospital this afternoon (Thursday). Praise the Lord. His stoma looks really good and he seems to be on the mend. When he first left, he attempted to take a few steps, but then wanted to ride in the stroller. When we got back to the Children's House, he took a "short" four hour nap. Wow. But this nap really made a difference for him, though. Plus, it allowed Daddy some time to do a little bit of work (part of his job can be done remotely). When he woke up this evening, he was doing a lot more walking and even managed to walk up two floors worth of steps, with just a little help. If all continues to go well, we will be making our way back toward Chattanooga tomorrow morning (Friday). Here are a few prayer requests and praises:

1. Please pray for safety as we travel, especially for Jacob. We do have some good meds in case he gets a little nauseated, but pray that he will handle the long trip well.
2. Praise the Lord that we only had to spend three nights in the hospital this time and hope to be heading toward home tomorrow.
3. Please continue to pray for James. He started some medicine today for the cough that he has been dealing with for the past two weeks.
4. Praise the Lord that Jacob has started eating a little and drinking quite well.
5. Along those same lines, though, please pray that his bowel function will soon return to "normal." He has not had a lot of output so far relative to what has been going in. This may take a little more time, but we pray that his full appetite will return and that he will not experience anymore of the bowel/stoma related discomfort that he had after his 2008 surgeries.
6. Praise the Lord that Jacob may not need any more surgeries for a couple of years.

Above all, though, Praise the Lord, for He is Good. Praise the Lord, for He is full of mercy. Praise the Lord for HE ALONE is worthy.

Mommy and Daddy

Today's Update

Jacob had a pretty good night, although our next door neighbors did make it a little challenging to sleep. Dr. Lau came by and is pleased with his progress. He feels like Jacob may be able to be released tomorrow. Jacob has started to eat a little, but still had not wanted to drink much, yet. He continues to receive pain meds through the IV, but may soon switch to oral meds. Jacob was able to get up out of his bed for a little while today and go into the play room. He walked a short distance by himself, but is still regaining his strength. We are not sure how long we may need to stay here after he is released, but there seems to be a good chance that we'll be able to leave by the weekend.

Please pray that this surgery will "work" in the long run. Dr. Lau seemed to imply that there is still a chance that his stoma might prolapse again, although he feels like it won't get to the extent is was prior to the surgery. Also, please pray for complete healing in and around the site of his incision. We were advised that there are a total of four stitches and we certainly don't want the area to become infected or open up.

We, do, of course, have some praises as well. Jacob has been once again "spoiled" by three of his favorite nurses and certainly a number of others that have cared for him over the years. We are so thankful to have individuals who are so committed to his post-op care.

We are also thankful that both James' and Gran's coughs are doing a little better.

We are able to love and serve one another because He first loved us.

Mommy and Daddy

Post surgery update - Praise

Jacob went back for surgery, with Daddy, at around 7:40 this morning. The surgery began just before 8:30 and Dr. Lau came out at around 9:00 to advise that he was finished. We were pleasantly surprised that he was able to finish so quickly, but definitely thankful. He advised that he was able to simply move Jacob's bowel/colon and attach it to his abdominal wall rather than having to place mesh or anything like that in there. He feels like this will prevent his stoma from prolapsing or at least keep it to where if it does, it will only come out a little. Jacob stayed in recovery for about an hour and now has been brought back to his room. The plans for now are to keep him in the hospital for a couple of days. The Lord graciously helped keep Jacob fairly calm throughout the entire process. He will be receiving paid meds, probably continuously, for the next 24 hours or so. Unless there are complications, Dr. Lau feels like we should be able to go home shortly after he is released from the hospital.

Thank you for your continued prayers and remember - Pray to the Lord and Praise His Holy Name.

Mommy and Daddy

The Admission and Prep

Jacob was admitted to the hospital a little after 2 pm today. The nurses have started an IV and put in the NG tube. The IV went in fairly easily, but the NG was a little more challenging. They have begun giving him the stuff with the strangely appropriate name -Go Lightly.

Thank you for your prayers and praises this evening as we prepare for the surgery in the morning. Pray for Dr Lau that he will have a steady hand and a solid plan for the revision. Praise Him for opening the doors for Jacob to receive his care at Johns Hopkins and providing for all of our needs (abundantly).

Almighty God is He.

M&D

A Safe Trip Up

Mommy, Daddy and Jacob arrived safely in Baltimore this evening. Thank you for your prayers. We are most thankful that we ended up missing the strong storms that came through the area. We saw quite a few trees down near Charles Town, WV. We do have one huge praise to share - on our way up this morning, we received a call from the Children's House, advising that they had a last minute opening for us. This is a blessing for all of us. Jacob loves being here because there are tons of toys to play with and new friends to meet. He has been asking us over the past few months - when are we going to go back to The Children's House? We certainly wish that we were just here for that, but at least he looks forward to this part of out journey.

Sometime in the morning, we will be calling the hospital to find out when Jacob is to be admitted. Please pray that this process will go smoothly. Also, please pray especially for Jacob as he will have a full bowel prep and possible NG tube put in. The surgery time is scheduled for 7:30 am on Tuesday.

We also like to ask your prayers for James and Gran as both have been battling coughs lately. Please pray that they will recover soon and the Lord will keep everyone else healthy, especially Jacob. James is staying with Papa and Gran this week in Knoxville and while we know he will have a great time with them (having a small pool there doesn't hurt either)t we will certainly miss him.

We heard a good sermon on the radio while driving up today. The theme of the message was this - no matter what the circumstances, there are two things we should always do - pray and praise.

Praise the One who, by His blood, allows us to come boldly before His throne of Grace.

Mommy and Daddy

Update on the next surgery

As of our last update, we were planning to call Dr. Lau's office this week (or thereabouts) to schedule a surgery for Jacob's stoma/colostomy repair. However, we received a call this past week from his office, advising that they already have a date for us (this is where we insert a commercial break and keep everyone on edge, waiting to find out the date).

Ok, so without commercial interruption, the surgery date is next Tuesday, the 27th. The doctor anticipates that Jacob will need to be in the hospital for about three days. Since a bowel prep is required for this surgery, he will actually be admitted the day before (the 26th) at noon. We will probably travel up on Sunday. We were pleasantly surprised and thankful that the Lord opened up a date much earlier than we expected. In the past, when we called to schedule surgeries, it was rare that it would happen sooner than 3-4 weeks after we called to make the appointment.

We certainly covet your prayers and have compiled a list of specific requests. They are as follows:

1. For Mommy and Daddy as they pack and prepare. Gran is here in Chattanooga this week and has helped tremendously by watching the boys. We are very thankful for all that she has done and is doing.

2. For good health for all of us, especially Jacob.

3. For safety in travel as we go up to Baltimore this weekend.

4. The Lodging situation - The Children's House, where we typically stay, is very busy this time of year and it doesn't appear that we will be able to get in there (although nothing is impossible with God). However, there is another family who has offered to share part of their town home with us. This town home happens to be the exact same one we stayed in during the 2008 surgery. It is close to the hospital. We would still like to get into the Children's House, but are thankful for the generosity displayed by this family.

5. For James as he will be staying with Gran and Papa in Knoxville.

6. For the bowel prep - anyone who has ever had one of these knows how unpleasant it is. With Jacob, the doctors will probably have to put a tube in his throat, and that part is very tough on Jacob.

7. For the surgery itself (including the anesthesiology) - Dr. Lau may have to put some mesh around Jacob's stoma to offer it greater support, and so this surgery may be fairly extensive. Also, in addition to praying that this surgery will be successful, please pray that he will not back track with his eating and weight gain. Ever since his stoma has been prolapsed, he has been eating well and gaining weight. Part of this may be because everything is so open and therefore things are able to "move through" easily. While we realize that his colon needs to be inside of his body, we pray that putting it back him will not cause him to go back to where he was last year (tightness, uncomfortable during the night, unable to sleep and eat well, etc).

8. For recovery - please pray that Jacob will recover quickly and that we can return home soon. James has a birthday coming up on August 7th and school starts for him on the 11th. We'd love to, Lord willing, be home before then.

Praise the Lord, for He is gracious and merciful. Praise the Lord, for He is good. Praise the Lord, for He works in and through every circumstance that which pleases Him and accomplishes His good purposes. May His Name, that Name that is above all others, be glorified and lifted up throughout this journey.

Mommy and Daddy

Last weekend - the outcome

The scope that Jacob had last Friday went very well. Other than getting an ultrasound done in about six months (which we will have sent to Dr. G), the Urology side of things looks very good. Dr. Lau, who handles the colostomy and stoma side of things, came in during the scope to evaluate that situation. He still feels like surgery will be necessary in the coming weeks, but wants some additional time to think about the best course of action.

Jacob does not have a lot of muscle tissue in his abdomen area to help hold his colon/stoma inside. So, it is not simply a matter of putting it back in, because it may prolapse (come out) again. What he may do is put some sort of mesh in that area to be sort of a make-shift abdomenal wall. He said this is a little more complex of a surgery that the revision that he had back in January. He has asked us to call him back towards the end of this month, and make the arrangements at that time. We will let everyone know once we have a date and so forth.

As for the remainder of last weekend, we did get to attend the Exstrophy picnic that was held on Friday night and Saturday morning. Daddy BA had his five minutes of fame and delivered what he thought was an OK speech. This year was probably one of the best so far because there were about seven families there, in total, who have someone with the same condition as Jacob. They ranged in age from under one year to about 17. There were many others there, too, that have a slightly more common condition called Classic Bladder Exstrophy, but actually having our own group session with the Cloacal Exstrophy patients and families was really great.

Saturday afternoon we left Baltimore and headed toward Papa A and Grammy's home in Virginia. We stayed there Saturday night and headed out Sunday morning. We stopped by Knoxville to see Papa and arrived safely back in Chattanooga on Sunday afternoon.

For now, it is back to the summer routine. Thanks to everyone for your prayers during this past week.

"He paid a debt He did not owe, I owed a debt I could not pay - He is Jesus, Our Lord and Savior."

Daddy and Mommy

Previous Post Continued

After our January surgery, we scheduled several follow-up appointments for this week, knowing that the annual exstrophy picnic would also be taking place this week as well. Jacob had a visit yesterday with Dr. Lau (general surgery - the "stoma" doctor). As soon as he saw Jacob's prolapsed stoma, he immediately said that we needed to do something about it. He noted that there are risks for problems with it being out like this. We are thankful that the Lord has sustained Jacob over these past few months and kept him free from any major complications. The most challenging aspect for us has been keeping colostomy bags on Jacob. But we'll take that any day over other colostomy, stoma or intestinal issues.

So, Jacob will have another stoma revision surgery to correct this issue. The surgery will likely take place toward the end of July. At this point, the doctor thinks that the surgery itself will last about two hours and will require a few days of recovery in the hospital. Jacob will have to be admitted the day before his surgery for the ever so pleasant "bowel prep." We will update everyone once we have a firm date for this surgery.

In the meantime, Jacob has a minor procedure tomorrow morning with Dr. Gearhart. He will be performing a "systoscopy" (we call it a scope). This scope is typically a very short procedure where Dr. G will examine his urethra to make sure everything still looks good from a Urological standpoint. Dr. Lau is also going to come in and get an initial look at his stoma as well, in anticipation of the upcoming surgery. The procedure does require a little bit of anesthesia. It is scheduled for 10:45 in the morning. Please pray that everything will go well with this procedure and that nothing will be out of the ordinary.

Jacob also had a visit with his orthopedic surgeon, Dr. Sponseller. He was very pleased with Jacob's progress and was thrilled that Jacob can now run and jump (a little). The X-Ray looked great as well. Praise the Lord!

Our older son, James, also had an appointment today with Dr. Kosov, a well known epilepsy doctor at Johns Hopkins. He is fairly confident the seizures James had last year are the type that he will likely grow out of by the time he is a teenager. We will continue to give him his medicine for at least another 18-24 months, but it does not appear that he will need any further tests or evaluations at this point.

And finally, we will be attending the aforementioned Exstrophy Picnic on Friday night and Saturday morning. This is a great event that allows families and individuals who deal with the challenges associated with bladder and cloacal exstrophy to meet, share experiences and hear from several physicians that specialize in all aspects of these two conditions. Daddy BA will be speaking at this year's picnic, specifically about cloacal exstophy. Please pray that he will do well during his "five minutes of fame."

We will provide another update following Jacob's procedure tomorrow morning and again this weekend prior to our trip back to Chattanooga.

Thank you for your faithful prayers of petition and praise.


"Jesus - there is something about that Name. He is our Lord and Saviour."

We're back - travels, appointments, surgeries and more

Things have been going quite well since our last update (over two months ago). We've seen James graduate from Kindergarten and prepare for First Grade. We've had visits from our cousins and enjoyed a couple of trips to Dollywood and Splash Country. Jacob has been attending a Pre-K program twice a week. Both boys have attended Music
Camp (James) and VBS (Jacob). Jacob can now jump a little and even run. He has gained almost five pounds since his January surgery. The urological aspect of this most recent surgery has worked very well. Jacob has been eating and sleeping very well over the past three months. This is a most welcome change for all of us. Praise the Lord for His amazing grace and the undeserved mercy that He has extended to our family.

There has been one area of concern with Jacob that has "worsened" slightly over the past few months. His stoma, which had begun to prolapse (come out) as of our last update, has gone from about 2-3 inches out to now being close to 6 inches. Essentially, instead of having this small bit of stoma (where his poo empties into a colostomy bag), it now looks like a lenghthy portion of his colon is extending from his body. The doctors have advised us that as long as the color and output are OK, then he is fine until his next scheduled doctor appointment. Those appointments are happening this week. See the next update for more info on the outcome of these appointments and what is coming next.

To quote one of Jacob's favorite songs, which he sings quite often - "My God is so big, so strong and so mightty, there's Nothing My God cannot do."

Mommy and Daddy

Update from the past few weeks

Jacob has been doing fairly well since the last update and ER visit earlier this month. His vocabulary is growing daily and his personality continues to develop. His mobility has also been good. He is slowly recovering from a bout with bronchitis (or something like it). He has also had a couple of fevers over the past few weeks, perhaps related to the respiratory illness. They were similar to the high fever he spiked while in the hospital in that he didn't act very sick. So we are not totally sure what may have caused these, but we are thankful that they seemed to have passed.

On a separate front, we have had a bit of a concern with his stoma (colostomy). It has started to protrude as much as two inches (sometimes closer to three) from his body. We have e-mailed the surgeon at Johns Hopkins but have not heard back from him. We did, however, speak with one of the nurses by phone and she advised that as long as the color looks good and their is output, we should be OK. Everything else regarding his most recent surgery, especially the urological side of things, has been working quite well.

Please continue to pray for the things mentioned above and rejoice with us well. Jacob has been able to get back into the Pre-K program that he attended before and even though it is only once or twice a week, he seems to like it quite well. In addition, with the exception of this past Sunday when Jacob was still sick with the respiratory infection, we have been able to get back to church on a pretty regular basis.

As we approach the Easter weekend, we hope everyone will remember what this "holiday" symbolizes, that being the death and resurrection of our Lord and Saviour, Jesus Christ.

"He is Risen. He is Risen indeed."

Mommy and Daddy

Praise

Jacob was actually doing so well that the doctors decided to release him yesterday evening rather than keeping him for another night. He is home now and doing much better. Thanks to everyone for their faithful prayers.

God is good. Always.

Mommy and Daddy

Update for today

Praise the Lord - Jacob is doing much better today. He has been eating again and drinking fluids. Both of the tests came back negative (C-Dif and rhotovirus). As of earlier today, they have stopped the IV fluids. The doctors have decided to keep him for one more night, though, in order ensure that he keeps everything in and continues to improve.

Please pray for Mommy - she started feeling bad a little earlier today. Daddy has come to the hospital and Mommy is heading home to rest for awhile. James is participating in his first after school program until 6 pm this evening.

Please pray that the Lord will remove this virus completely from our home and that no one else will come down with it.

"Shout to the Lord, all the earth, let us sing. Power, Majesty, Praise to our King."

Mommy and Daddy

Update

Since Jacob's bicarb and sodium levels were both a little below normal, the doctors decided to admit Jacob this evening. He has gradually started to come around and drink a little Sprite and eat a few crackers. Mommy will probably stay with Jacob and Daddy will take care of James. Thank you all for your faithful prayers. We ask that in addition to your prayers, that you also take a moment to praise the Lord for His great faithfulness - even in the midst of challenging situations.

Mommy and Daddy

Prayer Request

Please pray for Jacob - Mommy took him to the Emergency Room this morning because he continues to have trouble keeping fluids in. They have started an IV and given him some medicine to help with nausea. They are checking his electrolytes and other levels. We'll provide more details as we get them. He is generally in decent spirits and wants to drink liquids, but cannot keep them in very long. Please pray that his condition will improve, soon, and that he will not become any more dehydrated.

The Lord is Powerful and Strong, but also Loving and Compassionate, full of grace and mercy.

Mommy and Daddy

Lots of praises and a couple of prayer requests

We'll start with the praises. Here they are:


1. As of late last week, Jacob no longer needs the walker. He has been walking pretty well without it.

2. The incision that was causing problems is almost entirely healed. This was one of the former pin sites from the 2008 surgery that was "cleaned-up" during last months surgery. Because of its close proximity to his stoma and "poo" bag, it was slow to heal and was borderline infected. After a lot of peroxide, antibiotic ointment/meds and of course a ton of prayer, we have been able to stop bandaging it.

3. For the second week in a row, we were privileged to be able to worship the Lord along with fellow brothers and sisters in Christ at CPC. In addition, we were able to attend our monthly Shepherding Group. It was great to be able to reconnect with those in our group, in a less formal setting (and with some good barbecue as well).

4. With the exception of last night when both boys were not feeling well, Jacob has been sleeping through the night ever since we got back from Baltimore. This is a huge praise for both Mommy and Daddy as there were many nights during the past year or so where Jacob would wake up two or more times a night (sometimes due to pain, other times hunger, and sometimes a combination of both of these).

5. Even though Jacob has been sick for the past day or so, we realized that God really blessed our entire family with good health in the time leading up to his surgery. James, Mommy and Daddy were each a little bit sick during the latter part of 2009 and into early 201o, but each time the Lord spared Jacob. And this was during a time where James began school and there were plenty of reported H1N1 cases around us (and others that may not have been reported).

Thanks be to God for his unfailing love and mercy.

There are also a few prayer requests as well. They are as follows:

He alone is worthy to receive all glory, honor and praise.

Mommy and Daddy

What's been happening this week...

We are so incredibly thankful to have been able to get back to church this week. We have missed being in the House of the Lord and being able to bring to Him the worship and praise that He is due. It was wonderful to be reunited with our church family. Several who sing in the choir commented on how thankful they were to see Jacob stroll down the middle aisle of the sanctuary with his mini-walker. While welcoming visitors, our Associate Pastor, Eric, commented, "we wish to welcome the Arrington's, who are visiting from Baltimore. Oh, wait, they actually live here." It was quite funny, but certainly had a bit of truth to it. With the anticipation of surgery last fall, we really had not been able to attend since that time. Even though we were gone, however, we didn't feel forgotten. So many from our church took the time to e-mail, call and send notes of encouragement. And we know that almost everyone prayed for us on a daily basis.

After the service, we were all able to attend our respective Sunday School classes. Words really just can't describe how thankful we were to be back again. We look forward to being able to become more involved in our church and to see our boys in a position to grow up in an environment where Jesus is Lord and King. Hallelujah, Praise the Lord for all He has done.

Jacob continues to make good progress with his recovery. Today he began walking, a little, without using his walker. He still complains a bit about his left leg and the "wound" on that side is still slow in healing. He periodically will say that his "pee-pee hurts", although we wonder if that has more to do with gas pain or perhaps just a lingering sensation from when he had the SP tube in place. We do think there may be some relationship between these things (i.e. the wound has some pain in it and thus he doesn't want to put as much weight on his left leg). He has begun Physical Therapy as of last week. Beginning this week, we will be having our Home Health Nurse (the same one we used prior to surgery) come this week to help with the dressing and treatment of that wound. On a more positive note, we did find out today that Jacob will be able to go back to "school" next week. This school is associated with another wonderful church in our area, one that has graciously taken in both of our boys over the past three plus years. Jacob will attend from 9-2 on Wednesdays and he seems ready to go back. Mommy is also excited because she will have most of that day to herself, with both boys being in school and her bigger "boy" at work.

Speaking of school, we must say that James has definitely surprised us a few times with all of the things he is learning in Kindergarten. He has five spelling words to learn each week, in an effort to get him ready for First Grade. So far, he has had his words completely memorized by early in the week and has made a perfect score on each of his weekly spelling tests (I think he's had four or five to date). Also, just this evening, he was doing some basic addition (1+1, 2+1) for us. Mommy and Daddy looked at each other, knowing that it may not be long before he gets in to stuff that we have both long since forgotten how to do. Jacob has also been learning how to say and spell some basic words, using a neat educational game on "Daddy's phone."

James also had his very first dental visit today. We were a little concerned about this, in light of some of the challenges we've had with him at other doctor appointments. However, he went right back, plopped down in the chair and did really well. He has already lost his two bottom front teeth and the permanent ones are almost all of the way out.

We ask that you all continue to pray for the things mentioned above, but also ask that you rejoice with us and offer praises to the God of all gods for his mercy, grace and loving kindness.

Mommy and Daddy

Home Sweet Home

We arrived safely back in Chattanooga late Sun Night/Early Mon Morning. It is great to have everyone home again and to see how the Lord worked so powerfully in each of our lives during this challenging time. Jacob continues to improve with each passing day. He began Physical Therapy today to help him get back to full-time walking again. He is still having a couple of minor (hopefully) issues with one of the scars that was repaired. We hope to have a nurse come to our home to help treat this wound area so that it will heal properly. Also, when he walks, one of his legs seems to turn out quite a bit. Since it is the same leg where the scar/wound is located, it is possible that the two things may be related. Otherwise, he has been doing well. He, James and Daddy were able to wrestle last night for the first time in awhile (and really the first time without the SP Tube there to worry about). The boys have been dealing with some runny noses and coughs this week, but that all seems kind of insignificant compared to everything else.

We can't thank everyone enough for all of your prayers over the past five + weeks. As parents, we know that the Lord used these prayers to help sustain us, because we certainly would not have been able to hold up well at all w/o them. We hope to still put some photos up from time-to-time and periodically provide updates as to Jacob's progress through the PT and wound care.

He will have a follow-up appointment and another scope in about three months or so and we will let everyone know more details once we actually get things scheduled.

And to all of our friends and family at CPC, we hope to see everyone this Sunday morning for worship. We have been absent for many months and miss you all terribly. We rejoice, however, at the thought of being back in the house of God this week (Lord willing, of course).

He is faithful. He is merciful. He is gracious. He is powerful. He is loving. He is Lord.

The Arringtons

Heading Home - Minus one SP tube

Praise the Lord! The procedure went very well today (Saturday). Dr. Gearhart was pleased with the scope and also removed the SP tube. So, Jacob is officially "peeing down below." Dr. G advised that there is nothing further that he needs to do at this point, so we are planning to hit the road back to Chattanooga tomorrow (Sunday). Please pray for safety in travel as there is a possibility of more wintry weather, this time in Chattanooga. Also, please pray that Jacob will handle the long trip well with the car seat, etc.

We were treated to a wonderful dinner this evening at the Children's House, hosted and prepared by the Morse family. They served Maryland Crab Cakes, Flank Steak, Cream of Crab soup, Green Beans, and for dessert, Tiramisu (along with some other goodies). And while the dinner was great, it was the testimony of this fine family that meant so much. These folks had a child that was treated here at Johns Hopkins a few years ago. The family received excellent care at the Hospital and wonderful hospitality from the Children's House. However, the Lord decided to bring their little one on up to be with Him. What a great testimony, though, and a great expression of what it means to be a child of God. Please uphold them in your prayers because it is no doubt difficult to be back here with all of the memories and so forth. Yet despite all of this, they still give of themselves to help families like ours. It is these situations that humble us and just bring us to our knees before the Lord, thankful for his grace and mercy - neither or which we deserve at all.

We look forward to being back at home soon and sharing all that the Lord has done for us.

"He is the Rock of our Salvation - His banner over us is Love"

Mommy and Daddy

Prayer Request and Update

After quite a few e-mails with Dr. G this morning, he has decided to try and do the scope tomorrow and remove the SP tube. The appointment is scheduled for noon. We are certainly excited about the possibility of bringing all of this to a close, but, Jacob continues to have a little bit of congestion and just a little bit of a cough. So we ask that you pray that he will be well enough to have the procedure tomorrow and that it will be a success. The procedure itself is very short - probably less than 30 minutes - but it does require light anesthesia.

Jacob has continued to walk around using his walker and certainly seems like he is feeling well. He has slept really well the past few nights, with minimal pain an discomfort.

Thank you again for all of your prayers.

Mommy and Daddy

Today's Update

Jacob had a good day today. He continues to gain strength in his legs and enjoys tooling around with his walker. He has a little stash of items in a make-shift basket that we've attached to the front of his walker. He keeps his DVD's, a couple of stuffed animals and his toy cell phones (wonder where he got that interest from - yes, Daddy is the cell phone geek in the house).

We contacted Dr. Gearhart today via e-mail and he wants us to continue to monitor the output from the SP tube every 2-3 hours, during the day. The output still seems a little high, even though there is decent output from down below, too. Please pray that his "pee-pee" will continue to make its way out through his urethra and that the amount coming out via the SP tube will continue to drop. The clinic was closed today, so we are not sure, yet, whether this will delay us in getting the SP tube removed. Also, he still has quite of bit of congestion, although his cough is not nearly as bad as it was earlier in the week.

Daddy was able to get quite a bit of work done today while Mommy took Jacob out for a stroll and while he napped. Mommy has really been able to connect with some of the other families that are staying here at the Children's House. Please pray that God will use her, through these developing friendships, to bring glory to Himself and as a testimony of His mercy, grace and power. The Lord can use even the most challenging situations to draw people unto Himself.

May His Name be Lifted Up

Mommy and Daddy

A good night and lots more snow

Praise the Lord that Jacob began peeing down below early yesterday afternoon. We were a little concerned that things might be digressing back to where they were in 2008, but by God's grace, things are actually progressing well.



Jacob had a very good night of sleep, which means that we also slept well. This is also a big praise. He still has the cough and congestion, so we ask your continued prayers for him in this regard.



The Baltimore area has once again been hit with a major snow storm. We are expecting another 12+ inches when all is said and done. This is on top of the snow that was already here from the weekend storm. The roads in downtown were still fairly messy yesterday before this latest storm began. Check out the link in the previous post for some video footage and photos from a local news channel.

We are not totally what the next steps will be for Jacob. Dr. G advised that he will check in with us today at some point. We continue to report our results to him periodically. He did advise yesterday that he is pleased with the results.

"The Universe declares Your Majesty"

Mommy and Daddy

Check out Baltimore's weather

If you want to see what the weather is like here in Baltimore and also see some cool videos and pictures. Go to www.wjz.com.

Love to all and thank you for your prayers

Jacob looking out the window at Children's House

Jacob looking out at the snow
A few more days of wrapping Jacob's legs and he will be out of this wagon

Prayer Request

Jacob did not have much output from down below this morning. In addition, he coughed quite a bit last night. We have once again capped off the SP tube and are trying to get him to drink more fluids. We've also e-mailed Dr. G's nurse regarding the situation. Please pray that his output will pick up down below, that he will drink enough liquids and that his cough will subside soon.

Thanks for every one's faithful prayers.

"Name above all Names"

Mommy and Daddy

Results from today's appointment

Dr. Gearhart successfully removed the urethral stint from Jacob today. In addition, we have started plugging the SP tube (catheter) during the day and will check the output from it every couple of hours. At night, we reattach the urine bag. We will be reporting our "results" to Dr. G's nurse every day. This is certainly a critical time because the ultimate goal here is to have the majority of the urine drain from down below and only end up with a little in the SP tube (except at night). Please pray that everything will flow where it is supposed to and that he will be able to have the SP tube removed within a few days. Dr. G did indicate that we may not need to have the scope done at this time as long he is satisfied with the results from this week.

Jacob still has a pretty bad cough, but thankfully no fever at this time. Please continue to pray that he will recover from this soon as it definitely affects his ability to get good sleep and will certainly be a concern should he need any procedures involving anesthesia.

There were a couple of really cool moments today. Jacob fell asleep shortly after we returned from his appointment, but when he woke up, we were able to pick him up and actually hold him for the first time in four weeks. Mommy carried him downstairs to dinner (pizza, salad and brownies from a wonderful local restaurant owner here in Baltimore) and he got the biggest grin on his face. Once downstairs, he was able to actually sit up on the sofa and not be confined to the wagon.

Once we received the e-mail from Dr. Sponseller advising that it was OK for Jacob to put weight on his legs, we immediately asked Jacob if he wanted to walk. He, of course, said that he would like to walk. So, we helped him take a few steps and he did pretty well. He is a little wobbly from being off his feet for this long, but by God's grace, he'll be back up to speed in no time. He and Daddy played for quite awhile in the recreation area here at the Children's House. Jacob absolutely loved being able to sit-up and move around. It certainly brought Mommy and Daddy a ton of joy to see him this happy.

With the possibility of another sizable snow event this week, we're not totally sure when the next appointment will take place. Our best guess at this point is probably Thursday. We will update everyone then. In the meantime, please continue to hold up the items mentioned above, but also take a moment to thank the Lord for progress Jacob has made up to this point.

Standing on His promises, with His strength, because of His mercy and grace.

Mommy and Daddy

Quick Update - prayer and praise

Daddy BA made it here safely last night at around 9 pm. He was just in time to catch the tail end of a surprising Super Bowl finish and enjoy some great food, donated by one a local restaurant owner. Praise the Lord for his safe arrival, despite a few trick spots near Harper's Ferry and in downtown Baltimore.

Because of the snow, Jacob's doctor appointment has actually been moved up to around 1 pm today (how often does that happen). The plan today is to remove the stint and cap off the SP tube (catheter). They and we will then monitor him for a few day.

We certainly ask that you pray for today's appointment - pray that the outcome will be as expected and that he might be one step closer to having no tubes in him. In addition, however, we ask that you also pray for Jacob as he has developed a pretty persistent cough. Other than the cough and a bit of congestion, he seems to be OK, but the cough may delay the final follow-up planned for later this week.

Dr. Gearhart will likely try to scope Jacob's urethra and bladder in a few days, once we've had a chance to make sure that the majority of his pee is coming out down below. But this does require that he be put to sleep for a little while. It is unlikely that they will put him to sleep with any sort of respiratory issues. Please pray that all will go according to plan (His plan, not ours).

We will look to provide everyone with another update this evening, after today's appointment.

With much love, given to us by the God of all Love,

The Arringtons

There is a car under that pile

They are here to help

Look how high

From the Childrens House second floor

20"+ snow in Baltimore. We are trapped

Looking out the door from the Children's House towards the hospital
Small path in front of the McEldrrey House
This says 20"
After the snow. Can you see the bench???
During the snow

Update from this week

This has been a tough week for our family as a whole, not so much because of Jacob (he has actually had a fairly uneventful week), but because Daddy and James are in Chattanooga and Mommy and Jacob are in Baltimore.

In addition, Daddy had planned to head back up tomorrow (Sat), but due to the incredible amount of snow that has fallen (and continues to come down), he will try to begin his journey up on Sunday. Please pray for him as he travels, especially as he gets into the snowy areas.

Also, please pray for safety for Mommy and Jacob as they "weather" the storm in Baltimore. We are thankful to be staying at the Children's House where there are other families, plenty of food and close access to the hospital, but most of the forecasts indicate that tonight and a good of tomorrow may produce some pretty significant snows with "blizzard-like" conditions.

Unless something changes, Jacob is still scheduled for his appointment with the Urologist (Dr. G) on Monday at 3:30pm. The plan is still to remove the stint and cap off the SP Tube. We will monitor his output in both places and, Lord willing, most all of it will come out via his urethra (down below as we like to say). If things go well during this testing period (about three days or so), then Dr. G will remove the SP tube altogether and we can hopefully make our way back to Chattanooga. We are praying that we may even be able to get back by next weekend.

James has had a good week at school. His Papa had a meeting here this week so he got to spend some time with him. James and Daddy had some father/son time this evening (a little visit to Chuckie Cheese and a bite to eat from Zaxby's). Please pray for James and Gran this coming week as well. Gran will be taking care of James from start to finish each day. She does a tremendous job and we are thankful beyond words for the sacrifices she has made for us. However, it is still challenging to keep an active five year old on the right track with schoolwork, play, laundry, etc.

He is Lord over all - including the wind, rain and snow.

Mommy and Daddy

Belated update - couple of prayer requests

From a medical standpoint, the last couple of days have been relatively uneventful (we are certainly thankful for that). Jacob has been having some occasional sharp pains in his abdomen, especially last night. There really could be a number of things causing it - from a possible urinary tract infection to his positioning (we were able to take him out for a short ride in the car yesterday) to something simple like constipation or gas. With James and Daddy preparing to head back to Chattanooga this weekend (weather permitting), please pray that we might be able find out what is causing this before we leave.

James got to spend last night with his two cousins, Ronnie and Joshua. This turned out to be a real blessing, especially in light of the difficult night that Jacob had sleeping.

Daddy and James had originally planned to leave for Chattanooga tomorrow. Then, we had heard about potential weather concerns and were going to leave today. Now, with potential weather issues in TN and VA beginning today, we will probably wait until Sunday. Please pray that when we leave, we will have safety in travel.

"His truth is marching on"

Daddy and Mommy

Today's Update - James' appointment day

Jacob once again had a pretty good day. We did have a little bit of a scare this evening when Daddy accidentally tugged on his SP tube (while trying to move him from his wagon to the bed). Thankfully, it did not come out, but it did cause Jacob some pain and discomfort. Otherwise, we enjoyed a visit from Aunt RoRo, Ronnie and Joshua and also some therapy dogs. The Children's House will bring in a few dogs every Tuesday for the children and families to enjoy. This week, they brought in two - Rusty and Abbey. Abbey is a very furry and lovable Golden Retriever. Rusty is, well, about the size of a small horse. He is a Great Dane and was quite a hit with all of the little ones as he is actually taller than many of them. Jacob, James, Ronnie and Joshua (and the rest of us) all had a great time with these dogs.

Today was also James' eye doctor appointment. John's Hopkins has an incredible eye center called The Wilmer Eye Institute. It was a challenging appointment, especially when trying to get the dilating drops into James' eyes. He was so worked up from these drops that he actually fell asleep when he went back to wait for the drops to do their thing. We then met with Dr. Repka and discussed his findings. He actually concluded that he was not exactly sure what has been causing the light sensitivity in James. He doesn't think it is due to any sort of retina or vision issues because all of these things checked out fine. He likewise doesn't think it is allergy related, either. He thinks it may be related to the seizure medicine, but did not want to commit to this without checking with another doctor who specializes in seizures. He also advised that they could do some additional testing on James under anesthesia, but likewise did not really want to do this unless absolutely necessary. In the end, as simple as it may sound, we may take James off his meds to see if things change. If we do this, however, there is certainly a risk that a seizure may occur again. We will probably stay with the status quo until we are able to see Dr. Kosov here at Hopkins in a few months (we originally tried to get an appointment with him this week, but he was unavailable until March). Jacob will need to have a follow-up bladder scope sometime in early May and we might try to schedule something for James then, too.

It is sometimes easy for us to become discouraged knowing that both of our children have varying degrees of special needs. However, we know the Lord has brought us here for a reason. We may not, in this lifetime, fully understand that reason (or reasons), so our prayer is that He will be glorified in these circumstances. We pray that He will use these challenging days and weeks to show Himself to others. We have met many people here in just about every walk of life. May the Lord use even us, with all our faults and weaknesses, to show Himself to others. Please pray that our actions will evidence the faith He has given to us.

Also, we sincerely believe that it is the prayers of His people that, by His good will, help sustain us and pull us up when we are down. We have been and no doubt will continue to be encouraged by the outpouring of love and concern, not to mention all of the other help, that we have received from people spread across quite a few states.

"Let my hands perform His bidding, Let my lips speak forth His praise"

Mommy and Daddy

Update for today and results from Clinic Visit

Jacob has had a good day today. He has been playing (in his wagon), talking and just being himself. James has also had a good time as well. He got to play with his cousin Ronnie for awhile last night and has met some new friends here at the Children's House. They are ages 8 and 10 and are from Sarasota, FL.

We had a clinic visit today with Dr. Gearhart (Urology). He is pleased with Jacob's progress and advised that we can now put Jacob in a car seat for short drives. This means we will likely try and visit Aunt RoRo, Uncle Ron, Ronnie and Joshua sometime this week. We are going to bring up the car seat and let Jacob "try" it out to make sure that he will comfortable.

Dr. Gearhart advised that Jacob will need to stay off his feet and continue to have his legs lightly wrapped for about two more weeks. His next appointment is scheduled for February 8th at 3:30 pm. At that time, the plan is to remove the stint from his urethra and cap off the SP tube (catheter). We will then monitor the urine output for about three days. This will involve pulling the plug from the SP tube every few hours and checking the output. Since the ultimate goal is to have the urine come out from his urethra (down below), there should not be much output from the SP tube. If everything works as planned for these three days, Dr. G will remove the SP tube entirely. Jacob should then be able to head home shortly after that. Dr. G then plans to do a bladder scope about three months after that to make sure that everything is still flowing properly through his urethra.

The doctors are still unsure what caused Jacob to have the extremely high fever. We are thankful that he has been doing much better over the past few days.

"Let every breath, all that I am, never cease to praise the Lord"

Mommy and Daddy

They're Here

Daddy and James arrived last night around 9:00p.m. It was so great to see them and to see James love on Jacob. There was a bunch of hugs and kisses. James didn't want to let go of Jacob he wanted to climb up in the wagon with him and not get out. Speaking of wagon, Jacob has to be wrapped for 4 weeks and no higher than 45 degree angle so this is the only real means of transportation for him.

Yesterday was very busy for Jacob and mommy. We were discharged early in the morning, but didn't leave the hospital until around 11:00 am.

James is having a great time playing at The Children's House with some children that are about his age. Jacob will ride in his wagon for awhile, then go back to his bed to watch his "God Made ..." videos. He will literally start up three of four videos at once (between the TV,computer, Portable DVD player (thanks Grammy and Papa A) and Daddy's phone). He seems to be handling the wrap fairly well, without too many complaints. The Lord has been so gracious to Jacob because he really is (generally) pretty cheerful most of the time, which is amazing considering all that has taken place recently.

Jacob has a follow-up visit with Dr. Gearhart tomorrow afternoon at 3 pm. We are praying that they might allow him to ride in a car seat (so we can all get out a bit).

James has his appointment with the eye doctor on Tuesday at 2:30. Please pray that we might learn more about what has been causing the sensitivity in his eyes.

Daddy will be attempting to work remotely this week - please pray that he will be able to get some things done and that the technology will work as "advertised."

Gran and Papa will be traveling down here on Wednesday of this week and plan to stay until Saturday. Please pray for safety in travel for them as they drive from Knoxville. James and Daddy will probably stay until Saturday as well.

With James missing school this week, it is important that we practice his spelling words and work on his "100th day" project. Please pray that we will be able to accomplish these things this week and balance it with visits to the doctor, time spent with family and daddy's work needs.

"Lord of lords, How Majestic is Your Name in all the earth."

Mommy and Daddy

Morning update

Jacob is still in the hospital, but seems to be doing much better. He has started eating a little and no longer requires the Tylenol for the fever. Thank you so much for your prayers. Mommy was able to get a little bit of sleep last night, but could still use some more.

We still do not know exactly what caused Jacob to have the high fevers. They are still running tests. Jacob seems to be taking most of this in stride and we are thankful that the Lord has granted him this strength. He continues to be quite the talker and socializer, for the most part.

Daddy and James are planning to drive up to Baltimore tomorrow morning and plan to be there for the week. Please pray for safety in travel for them, especially with the possibility of some leftover winter weather issues. Also, Daddy will be driving "his" car (due to it getting much better gas mileage), which has generally been very reliable, but has nearly 300,000 miles on it. Please pray that we will not experience any mechanical or other car related issues.

"King of Kings, Forever and ever"

Mommy and Daddy

Morning Update

After quite an ordeal with one of the ER resident doctors, Jacob was finally admitted early this morning (it is a very long story). He is taking ibuprofen to help keep the fever down and continues to basically be himself with some discomfort every so often.

We are waiting for the results of the tests from last night and will update everyone once we have these details.

Please pray that we will be able to find out what has been causing these fevers and treat accordingly. Please pray for Mommy as she got very little sleep last night due to the ER ordeal. We are thankful that God helped Mommy remain patient and calm, even as she and Jacob faced the aforementioned frustrations in the Emergency Room. There were a number of other individuals (nurses and doctors) from the three speciality areas that were a tremendous help, despite the challenges we had with the one ER doctor.

On the flip side, though, there are several nurses who have and continue to go above and beyond. Even when they are not at work or not immediately responsible for Jacob, they are always willing to help (texting, phone calls, you name it). We are so thankful to Kiki, Allie and Ashley for all that they have and continue to do for Jacob.

"How Great Thou art, how great Thou art"

Mommy and Daddy

Another Praise

Jacob's fever is now down below 100. Praise the Lord.

He will still (most likely) be admitted tonight while they await the results of the three tests (x-ray, blood and urine).

We will plan to update you, probably in the morning, once we know more.

Whether it be trials, temptations, or troubles, take it to the Lord in prayer.

Mommy and Daddy

Praise

The IV is "in". The doctors and nurses were able to get the IV into his hand. They are now awaiting the results from the blood work, x-ray and urine.

Your continued prayers are definitely appreciated - may God use them to His glory and to accomplish His perfect will.

Daddy and Mommy

Additional request

It appears that Jacob may be admitted tonight to the hospital. The doctors and nurses are having trouble getting the IV in (Jacob has historically been a hard "stick"). Please pray that they will be able to get this IV in and started soon.

Thank you.

Mommy and Daddy

Fever update

Since Jacob's temp continued to climb (near 106), Mommy took him to the ER. So far, everything has checked out fine (ear, eyes, etc). This fever, however, is similar to the one had the other day in that he is not acting sick. He is talking, playing a little and watching his videos. He even told us that "I am not sick." The doctor at the ER thinks that Jacob may have a urinary tract infection and they are going to do a "belly" x-ray.

Thank you again for praying.

Daddy and Mommy

Urgent Prayer Request

Jacob's fever has again spiked up, this time to over 103. We are contacting the Urology team and may have to take him to the ER.

Thank you for praying. We will update you again once we know the next steps.

He is The great physician.

Mommy and Daddy

Back up...

Jacob's fever has once again climbed back up - to 100.4. Please continue to hold him up in prayer and ask that it might come down and that we might be able to determine what is causing it.

He is faithful.

Mommy and Daddy

Coming down...

Praise the Lord that Jacob's fever is down this morning. It was a long night for Mommy CA as she regularly checked on Jacob during the night. Please pray that she might be able to get a little rest this morning. Thank you for your prayers.

"God of wonders, beyond this galaxy - you are Holy"

Mommy and Daddy

A little more info and additional prayer request

Jacob's fever has come down a little, for which we are thankful. We spoke with the Urology Department and they have advised that they can actually come see Jacob early in the AM if the fever persists (they make rounds beginning at around 5 am). This will certainly be much preferred, if needed, over having to go the ER.

Also, please pray that Jacob's stitches will not come loose or become infected. Along with the fever this evening, we've noticed some redness near the top of the incision. Jacob's legs have to remain wrapped, but sometimes he has other plans and tries to wiggle out of it.

Mommy and Daddy

Prayer request and one praise

Please pray for Jacob as he has once again spiked a fever (a little over 101). We have given him Tylenol to try and bring it down. The doctors and nurses have advised that if it goes above 102 that we should take him to the ER. What's really crazy about this particular fever is that Jacob is not acting sick. Part of that may have to do with the paid meds he takes. Whatever the case, we are thankful to serve an all knowing God who works through all of these seemingly crazy and challenging situations to accomplish His good purposes.

One note of praise - Jacob's "movements" have begun in earnest now (he is passing stool). Thank you for your prayers.

God of Wonder, You are Holy.

Mommy and Daddy

Checking out - update and prayer request

Jacob has just now been released from the hospital (Praise the Lord). He and Mommy CA will be heading back to the Children's House here shortly (they've just picked up Jacob's prescriptions).

The next scheduled follow-up will be with Urology this coming Monday (Dr. Gearhart).

Jacob does, however, have a low grade fever and appears to be a little bit flushed. We are, of course, concerned about the possibility of infections and/or illness. Please pray that the Lord will keep he and Mommy healthy and that Jacob will not develop any infections.

Please continue to pray that the Lord will grant us wisdom in making the various arrangments (travel, school, work, etc). At this point, Daddy BA and James may travel to Baltimore this weekend so James can visit with his brother and Mommy (as well as cousins Ronnie and Joshua) and also go to his dr appointment on Tuesday. These plans are still tentative at this point, although Daddy does hope to go up one way or the other.

One interesting thing that we forgot to mention yesterday - Dr. Sponseller, Jacob's orthopedic surgeon, stopped by to check him out. In the process, he actually got Jacob to give him a "high-five." This was pretty big deal for Jacob since he (for obvious reasons) tends to shy away from almost anyone wearing a lab coat or scrubbs.

He leads us by His own Hand.

Mommy and Daddy BA

Update

Jacob had another good night of sleep. He continues to improve a little each day. Dr. Lau (Gen Surgery) came by today and said that we should not worry much about the "movement" concern because it should begin to clear up once he is taken off of some of the meds. They are still planning to release Jacob from the hospital tomorrow, once Dr. G (Urology) has had a chance to come by and evaluate him. Here are a few specific prayer requests:

1. Please pray that Jacob will continue to "pee-pee" down below and that the new pelvic plate will not erode into his urethra. Mommy noticed a little earlier that he was not peeing down below, but here within the past few minutes, she noticed that it started dripping again.

2. Jacob had the tape on his SP tube removed and he has had some pain and discomfort from this. He will have to keep the SP tube and a urine bag in place for an undetermined amount of time (we hope to get some definitive info tomorrow).

3. Jacob still has the rash on his back, but it has improved a little.

4. Even with the encouraging words from Dr. Lau, we are still a little concerned about Jacob being able to pass stool.

5. Please pray that the hospital discharge process will go smoothly for Jacob and Mommy.

6. We definitely need prayer for wisdom in the coming days and weeks. With his release tomorrow and the likelihood that he will need to be back at the hospital within a few weeks for the "finishing touches", we may look to stay in the area rather than have all of us come back to Chattanooga. It appears that the Children's House will likely be able to house us for awhile, which is great. Much of this will depend on what we find out from Urology tomorrow. With James being in school, we definitely want to try and limit the number of days that he misses. This, along with Daddy BA's work, requires a lot of careful planning and decisions to ensure a good balance.

7. James has an appointment next Tuesday with an eye specialist at Johns Hopkins. Please pray that the visit will be informative to us as we seek to find out more about the eye sensitivity issues and how it may be related to the seizures he had last year.

8. Please pray for safety in travel this week as Daddy BA, James, Gran and Papa will all be traveling to Baltimore this week (although we are not yet sure if we will all go up at the same time).

9. Please continue to pray that the Lord will give strength to Mommy as she cares for Jacob (especially while Daddy is back in Chattanooga). Please pray for their safety and health as well.

We are thankful to serve a God who controls all of these circumstances and our prayer, ultimately, is that He will be glorified and that He will use these challenging times to show Himself to those around us.

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

Daddy and Mommy

Prayer Request

Jacob is in search of a "movement." Ok, we'll explain. Ever since yesterday, he has been eating very well, which is definitely a praise. However, he has not had any stool and with everything he has been eating, he is starting to get a little uncomfortable.

The nurses are giving him some Miralax and softeners to try and get things moving along. They don't believe this is a huge problem at the moment, rather, they think it is a result of all of the meds he has been taking and just a side effect of the surgery.

Please pray that this issue will resolve itself quickly and not cause any additional problems.

He is Lord over all.

Mommy and Daddy

Fun photo's with Chattanooga's snow

Chattanooga's first snow

Jacob say cheese

Mommy made the boy's their first snowman

Trying to catch a snowflake

Giving mommy a big grin

A "quick" release...(maybe)

The doctors have indicated that Jacob may be released from the hospital as early as this Tuesday (the 19th). His lower legs will remain wrapped and he will keep both the stint and SP tube in for at least another three weeks or so. At that time, he will be evaluated to see if his bladder is still draining through his urethra. If it is, they may remove the stint and "cap off" the SP tube for another few weeks, with the hope that he can eventually have the SP tube removed entirely (this is definitely one of our biggest prayers, too).

He continues to eat well - he even took down some mac and cheese today and a little bit of a hospital hamburger (you know, the good kind). Praise the Lord for these improvements.

The rash on his back is still an area of concern, but we pray this will be able to clear up over the next few days (especially once he is able to leave the hospital).

Daddy BA is back in Chattanooga with James and glad to be home with him, but he definitely misses Mommy and Jacob.

Amazing Grace, How sweet the sound.

Mommy and Daddy

3 Praises

Thank you Jesus. Daddy just pulled in the drive, Jacob is eating and mommy just woke up.

After Jacob fell asleep I went to the Children's House for a shower and to rest. But couldn't rest so I came back and Jacob was still asleep. My brother Ron called and said he would come sit with Jacob at 6:00. This was a perfect time because at the Children's House a church was bringing dinner. A very nice lady who's name was Stacey walked with me back to the hospital to help carry my food and drink. This was a perfect time for her to meet Jacob and ask if she would pray for him. I gave her the blog address to read and to share with other's. God is great to bring so many people in our lives to be able to share his story.

It is so good to see him eating now. Before his nap after the tube came out he had some juice, broth and a purple Popsicle. As soon as they got the ng tube out he asked for goldfish and cheese-its, so we gave him 2 goldfish to start slow. Now he is up to 5 small cups. Wow!!

As for me, I really passed out and got 2 1/2 hours of great hard sleep. I didn't hear our neighbor move out, them cleaning the room, moving a hospital bed in or Elisha (our wonderful nurse tonight) work on Jacob. I feel great! Thank you again for praying for me to be able to sleep in the hospital.

A little note to Daddy and James

Jacob and I love and miss both of you very much.

We hope you two have fun tomorrow

and we will be together again real soon.

Much love

Almost time for rest

Jacob is just about to fall asleep for his afternoon nap and maybe me too. Daddy got on the road around 11:30 and its 2:00p.m. now so he will be getting in real late. James might be staying with Papa and Gran over at Nana's house. Thank you for praying for Bryan as he drives home.

Rejoice always

Bryan and Courtney

Rise and Shine

Jacob's stoma woke up and we saw poopoo. That was so good to see, now he can start eating and they will take his ng tube out sometime this morning. His potassium was a little low this morning, but much higher than yesterday so they will give him some thru his ng tube right before they take it out. Our nurse Julie H will take the tube out in 30 min.

Daddy is saying goodbye to us and getting lots of love and kisses before he leaves for TN. It's hard to let go of him, but I know James will be happy to see him back home.

Daddy talking to Jacob before he gets on the road

Daddy telling him everything will be ok and he will be back real soon

Jacob looking up saying "back to the Children's House". I wish it was that close.

Getting a goodbye kiss

We just said our prayer and giving our kisses.
Notice Jacob's arms.

Big brother saying goodbye

James saying goodbye to Jacob before he goes with Gran

What a sight

Lots of hugs

and kisses before we leave

Evening Update

Jacob has had a pretty good day, today, with one exception. His stoma is slowly coming around (waking up). His fever has pretty well subsided. The rash on his back, however, appears to be getting worse. They are going to see if he needs some sort of anti-fungal med or powder to help treat it. Jacob hasn't complained about it a lot, but we can tell that it bothers him and appears to make him itchy. Thanks for your prayers regarding these concerns - please continue to pray that the healing and mending process will go smoothly and quickly for Jacob and that this rash will clear up soon.

Jacob still has the NG tube in his stomach (this went in before surgery as part of the bowel prep and currently allows them to "deposit" certain oral meds directly into his stomach) and cannot (yet) eat any solid foods or drink anything beyond what the IV fluids provide. The doctors were prepared to take the NG tube out, but decided to wait a little longer because his stomach was just a little bit distended (swollen) and he has not passed any "poo", yet.

We do not know how long Jacob will have to stay in the hospital, but he will likely have to remain in the Baltimore area for at least four weeks (this was based on the estimate from the Urologist). Their plan is to remove the stint in his urethra at that time and then monitor him closely for another couple of weeks. If he still drains urine well from down below, they will then close off (and later remove) the SP tube (catheter) that he has had since the surgery in 2008.

Daddy BA will be leaving for Chattanooga tomorrow morning - please pray for safety in travel. Also, please pray for Mommy as she will be with Jacob throughout the next week. Anyone who has ever stayed with a friend or family member who is hospitalized for an extended period of time will know how it can wear on you in more ways than one (especially when it comes to getting good sleep). Please pray that God will pour out his mercy on Mommy this week and give her that strength that only He can provide. Please pray that both will be able to get some good rest each night.

We hope everyone is enjoying the pictures and we hope to get more posted over the next week or so.

May the glory of the Lord shine down on us.

Mommy and Daddy

We miss James

James Daddy, mommy and Jacob love you sooooo much.

Daddy will be home soon. I miss you baby James.

Love mommy

What can I get done while Jacob is sleeping

Yes its me, Courtney on the blog posting pictures. I am so glad I have a little time to do this while Jacob is sleeping.

I want to say thank you to each and everyone of you for the many, many prayers. So amazing to see how God is answering them. Love to all

This is OUR Karen "Kiki" as Jacob calls her. Kiki giving Jacob some kisses and telling him how much she loves him. "My nose hurt Kiki" he said. Kiki we love you and thank you for coming to see Jacob on your day off.

Uncle Ron and Aunt Roro get Jacob to smile

After having fun with Allie when we first got there, Jacob had to get the NG tube. He

did not like this at all. He said his nose hurts.

Jacob started feeling better when he saw Uncle Ron and Aunt Roro.

We love you Uncle Ron and Aunt Roro, cousins Ronnie and Joshua

Our first day on the 6th floor and Jacob is making his rounds. Allie (our first nurse) is taking

Jacob around to say hello to all the other nurses he had with the 2008 surgery.
Got Jacob to look
Jacob and Allie
Allie getting a smooch in
Cute picture. Allie we love you.

One additional update this morning

We forgot to mention another praise - so far, all of the tests for things like the flue and RSV have come back negative. He will probably have to remain the the "droplet precaution" room for about a week, provided that all tests continue to come back negative. He does seem to be better today with regard to the chest congestion, too, for which we are definitely thankful.

May His name be lifted up.

Mommy and Daddy

Morning Update

Jacob had a very good night of sleep without too many issues. This morning, however, he does have a fever of around 100 that they are treating along with a bed rash on his back. He certainly seems to be feeling better as a whole and the talkative little boy we know and love seems to be "coming back." As an example, Jacob first asked me this morning where his "poo-poo" bag was at (His stoma hasn't totally "awakened" from the surgery so they have not a put a colostomy bag back on, yet). I told him that he didn't need one, quite yet, but will probably need one soon. When the nurse came in a little later, he then proceeded to ask her the same question. This is definitely a good thing because he really didn't pay much attention to these things yesterday. He also asks every person that comes in, "What are you going to do?"

Members of each of the medical teams came by to see Jacob this morning - Urology, Ortho and Gen Surgery. All were pleased with his progress. Urology estimates that that he will need to have his legs wrapped for about a week. We are waiting to find out when he might be able to sit up a little.

Praise the Lord for his progress and please pray for the areas of concern noted above.

Most Blessed, Most Glorious, King of all kings - may all of the glory be His alone.

Mommy and Daddy