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