Watch out for yellow snow

Jacob and Sophie worked so hard and came so far that we just had to let them pee in the snow. Our babies have suffered through things that most of us can't even imagine. So God gave me an idea to help them to focus, not on the pain and discomfort, but on the outcome - or better yet, the output. Jacob and I talked about what he could do when he starts cathing. My first thought was fruit loops in the toilet. His was, "I want to pee in the cat liter". Sometimes the things our kids say and come up with just blows my mind. I do love their creativity and imagination.

          

       Heading down to find some snow - cath in hand

                                    Found some

                                                What a proud mommy I am 

                           thank you God for snow...they will never forget this.

Back Home

We arrived safely back home late Wednesday night. We are thankful for a successful surgery and recovery period. Now, it is back to the "normal" routine - school, work and everything else. The boys did go back to school today for a few hours, but it is definitely a little overwhelming for them, especially after being away for so long.

Jacob continues to remind us each day how nice it is not to wear pull-ups any longer. He loves being able to wear regular clothes without all of the added bulk. And we, as parents, also rejoice with him each time he mentions it. Praise God for the great things He has done.

On a separate, but related note, we wanted to take a moment to thank all of our friends and family, and even those we do not know, for faithfully holding us up in prayer throughout this journey (and beyond).  We can boldly testify that God used these prayers to bring glory to His name and to hold us up during the most challenging times. 

In addition, we also want to throw out a special thanks to four groups of people, whose financial generosity continues to leave us in awe.  They are a school nurse, a school teacher and her extended family, a Sunday School class, a member of our church family and our anonymous "angel" (who supplied our wonderful van).

We will continue to (try to) provide periodic updates, espcially if something changes prior to our next visit to Hopkins. As of today, that will take place in June/July, when we plan to follow-up with each of his doctors and attend the annual exstrophy picnic.

We also hope that you all will continue to pray for us. Please pray that the cathing continues to get easier and that he will not get bladder stones, spasms or infections. Please pray that he will be able to get caught back up in school and that his nurse and other school staff will be able to adjust to the new cathing process. Please pray that he will gain some weight back. He lost about 8 pounds while away, which for him is a noticable amount. Please pray for the other aspects of his condition that we are currently monitoring - the tethered cord, spinal column, tip-toe walking, club foot, colostomy and continence stoma.

"Praise God from whom all blessings flow. Praise Him all creatures here below. Praise Him above ye heavenly hosts. Praise Father, Son and Holy Ghost. Amen"

The last tube - out and gone

After about seven weeks of tubes, we got the last one out today. Nurse Karen did the honors and even though Jacob screamed quite loudly as it was coming out, within a few minutes, he felt a lot better. No more SP tube. He was ready to hit the slide here a the Children's House. Praise the Lord that we've reached this particular milestone. Barring anything unforeseen, Jacob should not need any major urology work/surgery done until he is a full blown teenager. Just annual check-ups and ultrasounds.  Praise the Lord for brining us through to this particular milestone.  We would ask for your continued prayers with regard to cathing, bladder stones and fluid intake.

We now shift our focus to a couple of other areas of concern, that being the tethered cord and the toe walking.  We were able to see Dr. Jallo this morning and while the MRI from last year looks "stable", he is concerned about the toe walking.  We also wonder, though, if having the SP tube in has affected his walking as well.  With this in mind, we will be monitoring him for the next couple of weeks to see if there is any improvement, now that his SP tube is out.  If needed, we will return later this year for a tethered cord surgery.  We do pray that perhaps he will not need this surgery just yet.  In addition, we will also be looking to address the club foot with the casting and shoes here in the coming months. 

So now what?  Our plan is to start packing our things and hopefully begin the journey back to Chattanooga on Wednesday.  We would probably start tomorrow if not for the frigid forecast.  We are very excited at the prospect of getting everyone back to Chattanooga.

"For I know who holds tomorrow and I know who holds my hand"

Mommy and Daddy



 

 

Jacob's casting before

Just wanted to share photos of Jacob's club foot when he was a baby. The casting and shoes will be similar to what he will have done.

Jacob when he was a few days old

Precious foot right before his procedure and cast

Jacob at 3 months getting his first cast

And the shoes with the bars

Update from today's appointment

Jacob had his appointment today with Dr. Sponseller, his Orthopedic surgeon, concerning his tip-toe walking and leg pain issues.

Dr. S advised that his club foot has become more pronounced and that he'd like to treat it.

This will involve a three week casting process followed by a wearing special shoes with a bar between them. He did something similar back in 2007, shortly after birth, but stopped due to other areas that needed to be addressed(tethered spinal cord). If this procedure doesn't work to help his foot and leg, surgery may be needed later.

Dr. S wasn't sure about the tethered cord and indicated that this would be something to discuss with pediatric neurology. We still have that appointment scheduled for next Tuesday, but Mommy is trying to see if Dr. Jallo can possibly see Jacob tomorrow.

Please pray for wisdom and guidance for us and the doctors. Jacob is cleared to have another surgery, if needed, on the tethered spinal cord. On the one hand, we'd like to get as much done for Jacob as possible, while at Johns Hopkins, but on the other hand, we are certainly ready to have everyone back home in Chattanooga again.

We can't thank everyone enough for your faithful prayers.

May God' Name be glorified.

Daddy and Mommy