I (Karen) took JJ up to Stanford on October 25th. We had 3 appointments that day, starting at 10 am.
Neurosurgery said he is doing great and ahead of development on the "normal" spectrum! The new nurse practioner said that she wouldn't have guessed that were was anything wrong with him if we met outside of the hospital!
He had a bladder & kidney ultra sound before lunch. The technician said, "I can't tell you, but it looks good!"
The urology nurse told me she was confused why I was even seeing her. She said I must be confused that my child has spina bifida, and I shouldn't have him labeled like that. I took a little offense to the "being labeled" part, but was happy for her reaction. She said JJ's bladder & kidneys look perfect. He'll need some tests every 6 months until he is potty trained, just to make sure all his nerves in that area function.
We were supposed to see a Urologist MD, but the nurse canceled the appointment!
On to even better news...
JJ is almost walking! He is "cruising" which is the new term for holding on to things to give him balance as he walks around. He is into everything he can get his hands on or his little fingers into!!! He is so fun to watch. I think you can almost see his brain working as he figures things out!!!!
He is babbling and trying to talk. We can't wait to hear what he's thinking!!!!
About Me
- Jeff and Karen Doherty
- We were married in September 2005. We're best friends, and we love traveling and exploring new places. We like sci-fi movies and watching the history channel. Our little boy was born February 1, 2010. He is named Jeff Jr. or JJ. Our daughter Moira was born July 28, 2011. We have a cat named Munchkin. Jeff is a career military officer, and Karen works for a family services program for the Army. We live in Monterey, California. We are making this blog for our family and friends who we miss and want to share our life with.
Wednesday, November 03, 2010
Friday, October 01, 2010
Sunday, August 22, 2010
JJ's hospital updates
First of all, he's doing great! It was a bit up and down, but in the end, he's a happy, healthy little boy.
JJ had his first surgery on Wednesday, July 21st. Everything went well. It was a nerve-racking day; probably the longest day of our life. He was scheduled to be at the hospital at 7:30, but they didn't take him back for anesthesia until 9:30. We didn't see him again until about 4:30 in the afternoon. The nurse came out one time to give us an update that everything was going well. She said the doctors were taking their time and were happy with the surgery so far.
We spoke with Dr. Guzman after the surgery and he said it went great. The lipoma was "encapsulated," so he was able to remove the entire thing. They had to open up the end of JJ's spinal cord and put a little bit of fibrous tissue back inside. They were able to test all of his nerves in that area, and they said all were fully functional, including the nerves to his bladder and bowels. This was all great news!
We were able to go into the recovery room and be with him while he was waking up. We held his hand and rubbed his back while he came too. It was scary to see him drugged up, but he really didn't cry.
JJ had to stay flat on his back for the first 24 hours and then very limited movement for the second 24 hours. He had a special dressing on his bottom to prevent feces from getting into his incision. It took 3 people to change his diapers. By the end of the second day, he was getting wiggly and was done with not being able to play!
Friday we had a visit from a physical therapist. She did an assessment on his mobility and development. She said he was doing great and had surpassed expectations for a child without spina bifida. At that point, he had been rolling over for a few weeks. He was reaching for objects and passing them from hand to hand. He got up on his hands and knees and was attempting to crawl and he could stand if we held his hands for balance. She said this was all great and he was about 8 weeks ahead of where he should be. Yes!
Saturday we went home! I think the three of us were all ready to just relax.
We noticed some swelling at the surgery site when he was discharged from the hospital and the doctors said it was fine. The following Sunday, August 1, we compared his incision to the picture we took when he was discharged and realized that the swelling had slowing increased. We called the hospital that night and they suggested we call back Monday morning.
Karen called, and they asked her to bring JJ in that afternoon. Dr. Guzman was at a conference, so they texted pictures of JJ to him. He said it looked bad and scheduled a second surgery for that Wednesday. JJ was doing great through all of this. He was happy and had started to crawl that Monday morning. He had no fever nor was he acting like he wasn't feeling good.
As it turns out, he had a slow cerebral spinal fluid leak that was coming out of the holes made by the sutures in his spinal cord. The Dr. said he's never seen anything like this. They filled in the holes with a medical glue, sewed the bump area down to his flesh and glued that too so it all grows together. When we were in the recovery room, JJ was trying to crawl in the hospital bed, so we knew everything went well! JJ was finally discharged the August 7th.
We went for a 2 week follow up appointment on August 17th and the doctors are very happy with JJ's progress. We'll have to do a few monthly visits and then every 6 months and then once a year check in's. The doctors said everything looks good. The only concern now is bowel and bladder control because the nerves which affect those functions are located in the area they did surgery on. The doctor said we won't know how well those nerves function until JJ is potty trained.
Overall, we're doing great now! JJ is crawling all over the house. He's starting to play with his toys. He is very alert and smart. He seems to be catching on to how his toys work, as in if he pushes a button, music plays. We're having fun with him and he is a very happy, smiley boy!
JJ had his first surgery on Wednesday, July 21st. Everything went well. It was a nerve-racking day; probably the longest day of our life. He was scheduled to be at the hospital at 7:30, but they didn't take him back for anesthesia until 9:30. We didn't see him again until about 4:30 in the afternoon. The nurse came out one time to give us an update that everything was going well. She said the doctors were taking their time and were happy with the surgery so far.
We spoke with Dr. Guzman after the surgery and he said it went great. The lipoma was "encapsulated," so he was able to remove the entire thing. They had to open up the end of JJ's spinal cord and put a little bit of fibrous tissue back inside. They were able to test all of his nerves in that area, and they said all were fully functional, including the nerves to his bladder and bowels. This was all great news!
We were able to go into the recovery room and be with him while he was waking up. We held his hand and rubbed his back while he came too. It was scary to see him drugged up, but he really didn't cry.
JJ had to stay flat on his back for the first 24 hours and then very limited movement for the second 24 hours. He had a special dressing on his bottom to prevent feces from getting into his incision. It took 3 people to change his diapers. By the end of the second day, he was getting wiggly and was done with not being able to play!
Friday we had a visit from a physical therapist. She did an assessment on his mobility and development. She said he was doing great and had surpassed expectations for a child without spina bifida. At that point, he had been rolling over for a few weeks. He was reaching for objects and passing them from hand to hand. He got up on his hands and knees and was attempting to crawl and he could stand if we held his hands for balance. She said this was all great and he was about 8 weeks ahead of where he should be. Yes!
Saturday we went home! I think the three of us were all ready to just relax.
We noticed some swelling at the surgery site when he was discharged from the hospital and the doctors said it was fine. The following Sunday, August 1, we compared his incision to the picture we took when he was discharged and realized that the swelling had slowing increased. We called the hospital that night and they suggested we call back Monday morning.
Karen called, and they asked her to bring JJ in that afternoon. Dr. Guzman was at a conference, so they texted pictures of JJ to him. He said it looked bad and scheduled a second surgery for that Wednesday. JJ was doing great through all of this. He was happy and had started to crawl that Monday morning. He had no fever nor was he acting like he wasn't feeling good.
As it turns out, he had a slow cerebral spinal fluid leak that was coming out of the holes made by the sutures in his spinal cord. The Dr. said he's never seen anything like this. They filled in the holes with a medical glue, sewed the bump area down to his flesh and glued that too so it all grows together. When we were in the recovery room, JJ was trying to crawl in the hospital bed, so we knew everything went well! JJ was finally discharged the August 7th.
We went for a 2 week follow up appointment on August 17th and the doctors are very happy with JJ's progress. We'll have to do a few monthly visits and then every 6 months and then once a year check in's. The doctors said everything looks good. The only concern now is bowel and bladder control because the nerves which affect those functions are located in the area they did surgery on. The doctor said we won't know how well those nerves function until JJ is potty trained.
Overall, we're doing great now! JJ is crawling all over the house. He's starting to play with his toys. He is very alert and smart. He seems to be catching on to how his toys work, as in if he pushes a button, music plays. We're having fun with him and he is a very happy, smiley boy!
Thursday, June 17, 2010
"Firsts"
JJ had two firsts today:
First tooth! He's been drooling and teething for the last few weeks. His bottom tooth broke through today! Its just a little white spot now, but its through the gum. He seems so relieved. Yesterday he was so crabby. We could tell he was in pain.
First food! He has seemed interested in food while we eat, so we decided to try a little something. He had a little Gerber baby carrots tonight. He seemed to like them. Jeff fed him his first food. Go Daddy!
He is doing great. JJ is rolling around and doing "baby push ups" when he's on his tummy. We are looking forward to him starting to crawl.
He is such a happy baby. He loves to laugh and smile and he's very social. He has started reaching for toys and hair and our faces. He is very strong. He can hold onto our hands and we can pull him up from a laying position. He can also stand a little. He's wobbly, but he pushes up like a frog.
We are in love with our little man!
First tooth! He's been drooling and teething for the last few weeks. His bottom tooth broke through today! Its just a little white spot now, but its through the gum. He seems so relieved. Yesterday he was so crabby. We could tell he was in pain.
First food! He has seemed interested in food while we eat, so we decided to try a little something. He had a little Gerber baby carrots tonight. He seemed to like them. Jeff fed him his first food. Go Daddy!
He is doing great. JJ is rolling around and doing "baby push ups" when he's on his tummy. We are looking forward to him starting to crawl.
He is such a happy baby. He loves to laugh and smile and he's very social. He has started reaching for toys and hair and our faces. He is very strong. He can hold onto our hands and we can pull him up from a laying position. He can also stand a little. He's wobbly, but he pushes up like a frog.
We are in love with our little man!
Subscribe to:
Posts (Atom)