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3/27/09

Ty had his follow-up with Dr. Gray, orthopedic surgeon with Cook’s today.  It went pretty good.  Dr. Gray said that based on his x-ray’s it appears that he could possibly have vertebral problem in the cervical area and that he could have additional hemi-vertebrae that we did not initially see…however, all is not lost, at his age it is almost impossible to determine how severe the scoliosis will be.  The best way to see how it is going to progress is to look at his body alignment once he can stand on his own.  We have our next appointment with Dr. Gray on June 16^th to take more x-rays that will help determine when we will have the MRI.  He said he would expect to do the MRI this summer between 6-9 months of age instead of waiting until Ty is a year old.  We want to wait as long as possible since they have to put him under general anesthesia. 

Dr. Gray is also referring us to a Pulmonologist (lung specialist).  We need to have them follow Ty’s growth due to the fused ribs that he has.  We are not completely sure what Dr. Gray means when he says that the ribs will not grow and that could possibly lead to future respiratory problems, but we will be able to get more answers when we see the specialist.  We are also concerned about his breathing…he breathes really fast, generally more than 60 breaths per minute.

We are also going to see a general surgeon for his sternum.  When he breaths his chest in-draws…meaning that he has a bowl like depression in-between his ribcage.

3/10/09

Ty saw Dr. Kucolich, a geneticist today.  She looked at him and took a bunch of measurements.  He has been diagnosed with Facio Ariuculo Vertebral Syndrome or Hemifacial Microsomia.  Basically this means that the left side of his face is smaller than the right.  His differences are so minor though, they are hard for a normal person to spot.  His left eye is slightly more up-turned, his left ear is missing some cartilage and the left jaw bone is more straight than curved.  She took a picture and will follow his progress with periodic checkups.  In her opinion, the only thing that may have to be done is some orthodontic work or some minor jaw surgery if he does not have enough room for his teeth as he grows. 

1/21/09

Ty had his appointment with the Cardiologist, Dr. Lisa Roten, with Cooks today.  They performed another EKG and then went over the results.  He didn't have to have another ECHO because the one done at the hospital was already read by her colleague. 

She said that Ty had a small hole in his heart, but that was normal for all newborns.  The hole is there to allow blood to flow from one side of the heart to the other without going through the lungs.  Once the baby is born, this hole seals itself shut. 

Everything is good and she saw nothing wrong.  We go back in six months to make sure the hole sealed like it is supposed to.

1/15/09

Update:  The doctor came in today and was really happy about the CT scan results.  He let us know that the main thing was that Tyler’s neck vertebrae were not fused together and there was nothing wrong with them. He said that means that he probably doesn’t have Klippel-Feil syndrome.   He moved Ty’s head side to side and he didn’t cry.  That was a big relief.

He then gave us an overview of the results.  They included that Ty had two hemi-vertebrae and one bifid vertebrae and that we would still need to meet with the orthopedic surgeon to determine what course of action needed to be taken next.

He also said that we Would still need to meet with a geneticist to find out exactly what caused the vertebrae anomalies.  He also said that even though we already had one ECHO cardiogram we needed to have another performed by a pediatric cardiologist just to be sure.

After going over the results, he let us know that Ty was free to go home with us and that we just needed to schedule a few more appointments with the appropriate specialists.  He also wanted us to know that there was still a long road ahead.  With the new results of the tests, we were both relieved and happy to finally be going home.

We received a copy of all the radiologists reports on Ty since the first day, and the easiest way to let everyone know exactly what is wrong is to read the CT Report here.

1/14/09

Tyler Jaret Bryan was born, Monday, January 12, 2008 at 10:37am and appeared to have a "crick" in his neck.  He leaned toward the left and whimpered when you moved his head.  The doctors looked him over and decided to see how he progressed on Tuesday.

When Tuesday came, they were not satisfied with his movement so they ordered an x-ray.  The x-ray findings were not what we had hoped for.  Dr. Sward, the Medical Director for the Andrews Womens Hospital, returned late Tuesday night and said there were some serious issues with his spine and we needed to see a specialist.

When the pediatrician, Dr Kaushnik returned Wednesday morning he explained Tyler is missing half of his T7, T8 and T9 thoracic vertebrae.  The doctor said something happened during the first 3 months of his life that caused them to only partially form.  He said it appeared that he had hemivertebrae or wedge vertebrae, and maybe butterfly vertebrae, which is when a wedge vertebrae from each direction fuse to form a butterfly shape.

The issue with his neck was probably due to his neck vertebrae being fused together preventing complete movement in his neck.  Tyler can move his head partially side to side.

There were also issues with his rib cage.  People have 12 ribs on each side of their chest and Tyler has 13 on one side and 11 on the other.  They do not appear to be concerned about this.

The doctor ordered a CT Scan, an ECHO Cardio, multiple x-rays, a full abdominal sonogram, genetics testing and some chromosome testing on Wednesday.  We are at a point where all we know for sure is that there are pretty serious problems with his spine (his spinal cord is perfectly fine), rib problems (which they are least concerned about) and they are ruling out any heart, lung, stomach, etc. problems with all the tests. 

They said that there could be multiple surgeries in his future for the spinal problems and we will have to wait and see about the organs.  With all of these problems we could still take him home as early as tomorrow, we just have to be careful about how he is held and moved.  They said a future football star is out the question...but they will do everything they can to keep him as close to "on-track" as they can.

He looks so perfect and he does everything any other newborn does except move his neck.  Sam was very excited to see him and wants to hold him, but Zach kind of stared at him, then told us NO and pointed his finger at us.

He looks so perfect and he does everything any other newborn does except move his neck.  Sam was very excited to see him and wants to hold him, but Zach kind of stared at him, then told us NO and pointed his finger at us.

We met with the doctor Wednesday night and he said that he had received the results for all the tests except for the CT scan and the genetics testing (which will take two weeks.)  All the tests came back great!  There is no damage or defect to any organ that they scanned.  Only some calcium deposits which will disappear on their own.  We will find out Thursday morning what the CT scan says.  The CT scan will give the doctor a real three dimensional look of what the complete spinal column looks like and what  needs to be done will be up to the orthopedic surgeon.  If all goes well when the doctor makes his round Thursday and gets to review the results, we should be taking Tyler home!

See more pics of just me here: 

Check out the Bio of my brother Sam here:

Check out the Bio of my brother Zach here: