Evening update - an afternoon with Gran and Papa

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

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

Have a good evening and thanks for your continued prayers.

Daddy BA

Morning Update - visit from the doctors

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

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

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

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

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

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

For His glory,

Daddy BA

Evening Update - visit from Dr. Jallo

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

In Him,

Daddy BA

Afternoon update - post PICC line procedure

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

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

In Christ, and Him Alone,

Daddy BA

Evening Update - Praise

We rejoice and praise the Lord that Jacob's fever appears to have broken as of about 11 pm this evening. He started to shiver a bit and we weren't sure what might be causing it. The nurse came in and checked his temp. It is right at 98.6 degrees when it had been running between 100 and 101 degrees post-surgery. This is definitely a blessing and hopefully will allow Jacob to get some much needed rest as we prepare for the PICC line procedure tomorrow morning - - Daddy BA

Afternoon update - the day after surgery

Jacob is resting, but is awake and watching one of his "God Made Me" videos. He has said "Mamma" and "Dadda" and also asked for his "bay-bay" (pacifier). He sometimes reaches his arms and hands up toward us, wanting to be picked up. This is one of the tougher things on us as parents, because he looks at us as if to say, "Why can't you just pick me up? That's what you've always done before when I needed it." And we do long for the day when we can pick him up again, but not being able to explain to him why we can't right now is certainly hard. He continues to be pretty sedated with pain meds and seems somewhat comfortable, all things considered. This has, in large part, been due to the wonderful care provided by his two main nurses, Ashley and Allison.

He will be having a PICC line inserted tomorrow morning at 9:00 am to help him receive his necessary meds and fluids. This line is a stronger than a standard IV as it runs into one of his main veins. Getting standard IV's to stay in Jacob have always been a challenge and so the PICC line will hopefully help provide a long term solution. We are thankful that one of the IV nurses was able to find a place in one of his hands that would still accept a standard IV. We will continue to keep the scalp IV (put in last night) ready as a back up in case the one in his hand comes out prior to tomorrow's procedure.

One of the orthopedic attending doctors came in today and discussed our other main area of concern, that being his right foot. So far, we've seen some movement in his upper leg, but nothing in his foot. We hope to see the orthopedic surgeon later this evening to discuss this further. Please pray for Jacob's procedure tomorrow morning, as it will involve him again being sedated while the line is inserted. Also, please continue to uphold Jacob's right foot and pray that God will restore movement to this area according to His good timing. Lastly, please pray for Jacob's older brother, James. He is able to come and visit his mommy and daddy periodically, but wishes he could be with us all of the time. It is tough on us as parents when we are not able to give him the attention he desires and needs. He is in good hands, though, with his Gran, Pappa, Uncle Ron, Aunt RoRo and cousins Ronnie and Joshua.

Pictures before and after Jacob's surgery

Daddy, mommy and Jacob waiting in the Pre OP room

Mommy all dressed and ready to take Jacob back to the OR

James came to wait with us during Jacob's surgery

James waiting to go in the recovery room to make sure his brother is o.k.

Jacob just out of surgery

Jacob's legs in traction

The weights for traction

James wanted to touch his little brother and make sure he is ok

Right leg in traction

Jacob has to keep his arms in "No-No's" and the IV in his head wrapped because he likes to pull out his IV's