Hi…the delinquent blogger here. So I have some catching up to do for everyone. Two weeks ago we had a pretty uneventful visit to Cincinnati. JT needed a blood transfusion and then was able to get two full rounds of photopheresis therapy. JT’s medical team is not thrilled that he is needing so many blood transfusions but because the photo treatment takes so much volume of blood out of his body at one time it is imperative that he have an adequate number of baby red blood cells. The good news is that Hoxworth is in the process of getting a new and improved photopheresis machine. The new machine will be able to gather a more therapeutic number of t-cells for treatment and require less volume of blood to be taken out of JT’s body, hopefully leading to a decreased need for blood transfusion. We’re hoping the machine will be up and ready by the fall. The other good news about this machine is that because it collects more t-cells than the other machine, one round of treatment will be equivalent to three rounds on the old machine. This will hopefully give us the possibility again of moving to an every three week treatment schedule. With JT starting Kindergarten in the fall it would be wonderful for him to miss less school.
During the last visit we also decided to move JT’s steroid infusion to every Saturday at home. This will spread out his treatments to give him a more broad coverage. This requires an extra stick for him at home, but he’s so used to it now that it’s not a huge deal. He really is amazing about getting needle sticks. I’m very proud of him.
JT also had a dental appointment scheduled at OSU the day after our last Cincy visit. So since we didn’t have to bolt for home we took the opportunity to head down to the Newport Aquarium. We had a blast and JT and I actually got to pet some baby sharksJ After our adventure we headed to Columbus. Brian’s cousin Kevin and his wife Meredith have offered many times for us to stay with them and so we took them up on their offer. They have an adorable son, Reece, and JT and he had fun playing together. (Thank you again for your kind hospitality). In the morning we headed for the OSU Faculty Dental Practice to meet Dr. Lisa Knobloch. I had found her through the National Foundation of Ectodermal Dysplasia organization. She has treated many children with ED and so we were very excited to hear what her thoughts would be concerning JT’s dental treatment.
Dr. Knobloch was so kind and down to earth. She told JT to call her Dr. Lisa and he seemed to like her right away. It’s very important for children with ED to have a positive experience with their dentist as they will have a long term relationship with them. After checking out JT’s x-rays and examining him she felt he had quite a few teeth and that they looked to be cavity free. This was a little hard to tell exactly because he has lots of build-up on his teeth from all the medicines he’s had and the fact that he couldn’t brush his teeth for a year following transplant. So the short-term plan is to get JT’s teeth a thorough cleaning, make sure there are no cavities and continue with good oral hygiene. Since JT’s not a big fan of getting his teeth worked on Dr. Lisa suggested we use anesthesia to put him under, give him a very thorough teeth cleaning and do any necessary dental work while he’s under. Dr. Lisa called me herself yesterday to follow up and tell me her colleagues and she would feel better, with JT’s medical history, to do all this at the OSU Children’s hospital in the OR instead of at the Dental School.
After we get the cleaning done, the next plan is to wait a few years to let the permanent teeth that JT does have come in and then extract the baby teeth that don’t have permanent teeth behind them. From a cosmetic standpoint Dr. Lisa said we have a few years because most kids have spaces and gaps during this time of their lives and JT will fit right in. She’s not completely sure yet, but hopes that cosmetically she’ll be able to just use bonding and braces and perhaps a small partial to handle his teeth cosmetically until he is able to get permanent implants. At age nine he will be able to get a few implants for his bottom front teeth (he’s missing his 4 bottom front teeth). Apparently the jaw doesn’t change too much in this spot because the rest of the implants he will not be able to get until he’s 19 because the jaw is still growing and changing.
It was so relieving to have a dentist who knows so much about ED tell us what the dental plan should look like for JT. It was such an unknown thing to us that we were a bit more afraid than necessary. Dr. Lisa was so kind and took so much time with us and then the fact that she personally called my cell and left a message for me to call her on her cell – you can’t ask for better than that.
So now up to the present…JT and I are currently sitting in the hospital in Cincy and JT is getting his second day of photo. It’s been an uneventful visit. JT got a blood transfusion yesterday and then photo and today we’re hoping to be done around noon and then hit the road for home. Today is Brian and my 9th Anniversary so I’ve got motivation to make good time heading home.
Last week was JT’s first full week of summer school. He goes M-F from 9am until 1:30pm – that’s the longest he’s been away for school. He’s doing great though and enjoys going. Justy is attending VBS at our church this week too. He’s thrilled. He just absolutely loves being in a group setting and has no separation issues whatsoever. In fact both of my boys will say “Do you have to come in mom?” when I drop them off to places. I try not to take it personallyJ
Justy and I have had terrible colds for a week now. Justy’s pediatrician actually thought Justy could have a mild case of walking pneumonia. It’s really cute because Justy said, “I know where I got that pneumonia…Uncle Jeff gave me that shake and gave me pneumonia.” We had a wonderful visit with my brother’s family a few days before and Carolyn made these amazingly healthy fruit/vegetable shakes for the kids. Only my Justy would think such a concoction could give you pneumonia.
JT’s doctor actually put me on an antibiotic and thinks I have sinus infection. JT has been coughing a little, but we’re so hoping he doesn’t get the cold too. They did a CAT scan yesterday to check his upper repertory just to be safe. We haven’t heard the results yet this morning, but I planning on them being clear.
Thanks so much for checking in on us. I’m sorry again for the lack of updates and then for these really, really long-winded ones.