Wednesday, March 28, 2007
Caleb rolled from his tummy to his back yesterday!!!! He is also very close to rolling over onto his tummy. You have to understand he has had many central lines that have prevented him from working on this so he is doing great!!! Also, Caleb has started to push up on his feet while we hold him underneath his armpits and bear weight on his legs!!! Making great progress!!! I will be adding pictures of all of that this weekend when Brian gets here.
His earlobes have been puzzling the docs, they have swelled. We do not think it is a side effect of any of the meds so we are not sure what is causing it. He has not been able to wear his hearing aid for awhile because of the swelling. We are waiting for ENT (Ear, Nose, and Throat) to come and see him to see what to do about the swelling and the hearing aid. BUT, we have noticed that he can hear somewhat without it, so we are able to communicate with him. I think I am going to go ahead and purchase some sign language tapes anyway. We are not sure if he will need to sign or not, but what a great tool for him to learn!!!
That is all I have for now, as soon as I have more I will definitely post.
Monday, March 26, 2007
I can't believe I have to report this after being told last week that we should be going to Duke end of March or early April, BUT we were told today that it now looks like end of April! I can't believe it! It is very tough to sit here and hope and pray every day that he doesn't catch anything that could pose any life-threatening situations for him. The immunologists from Children's told us today that Dr. Markert (doctor from Duke) is meeting with the chairman of her department to see if there is anyway she can take Caleb even though she at her 'limit' on immunodeficient kiddos. Needless to say we are very frustrated!!! Very!
On a lighter note, we got a wonderful gift from our friends Amy and Max. They made Caleb a scrapbook with all of Bubber's photos with wonderful sayings and poems. It is absolutely adorable!!! We have already showed it off to all of the docs and nurses. The best part is we talk about Amy and Max often, and a lot of the nurses and docs have seen his card above Caleb's crib or his blog when they stop in our room and we are reading it on the computer and today when the package arrived one of the nurses, Chelsea, came running in and said 'you got a gift from Mighty Max'. Too cute!!! Thanks Amy and Max, we really needed that today...getting pretty tough to just sit and wait. Thanks so much guys...we love you!!!!
Thursday, March 22, 2007
Wednesday, March 21, 2007
We have found out that Caleb has a cyst on his earlobe that is actually, sorry to be graphic, pussing and bleeding off and on. He also has been a little more congested than normal and has been throwing up mucus and his earlobes have been swelling. They also were concerned that Caleb had a condition called sarcoidosis. To read more about sarcoidosis go to http://www.nhlbi.nih.gov/health/dci/Diseases/sarc/sar_whatis.html . In addition, Caleb has run a pretty high fever twice in the last week. So what is the cause of the fever?!?!!? Well they decided to do a catscan to check his sinuses and his lungs to check for sarcoidosis. First of all his lungs look good, no evidence of nodes which leads us to believe there is no sarcoidosis. When there were checking his sinuses they got a glimpse of his ventricles, which is what the shunt works to drain. They were concerned at the size of his ventricles as they looked larger so they took him back down for another CT scan of his brain. Good news, they think the shunt looks like it is operating and the ventricles do look a little larger than they did in December BUT that could be,good news, that his ventricles are growing with his brain. Good news that his brain is thriving. His ventricles though are very generous and probably will be the neurosurgeons are coming by today to see if they need to adjust his pressure setting to maybe allow the shunt to drain a little more than what it has been draining. So again what is causing the fever, they are concerned about the cyst on his ear or a potential central line infection. We should know more sometime this afternoon.
As far as when we are going to Duke, we are still waiting on a date. We do know however that insurance has approved transportation, so he will be flown by a jet with Children's transport team down to Duke. So he and I will go by ambulance to Pittsburgh airport and then fly from their to Raleigh, Durham airport. So I think I have added all I know at this point. Again, sorry with the delay in updates but as soon as I hear anything more today I will definitely post it.
Tuesday, March 13, 2007
Sunday, March 11, 2007
Okay had to enclose this picture of Caleb and mommy too, as he was so funny when he was laughing at me when he was up on my shoulder.
Orthopedics came on Friday and said Caleb's hips, per an x-ray, look good. They are a little 'developmentally delayed' for his age but they will be as he has been in a hospital which delays sitting, crawling, etc. The docs believe that as soon as he starts to put more weight on those joints that they will become stronger. Again, we will have to watch him closely when he starts to crawl and walk.
Gram and Pap Pap Byrum got Caleb an exercise chair that daddy and mommy tried out with Caleb this weekend. I can't even put into words how proud Caleb makes us, he is sooooo strong!!! He did great, he even pushed off flat-footed (as that is big as you don't want them to try to toe walk) a couple of times on his own while he was in his chair. He doesn't have full trunk support yet (but he is getting better every day) so we supported him with a white sheet around his trunk. AND can I just take a proud parent moment here and say what a CUTIE!!!!!
Caleb's Physical and Occupational Therapists, as well as his docs, are very encouraged with his developmental progress. He is doing great with 'cause' and 'effect' exercises too!!! He is fighting along. I know that sometimes these items that I post regarding developmental milestones seem like normal things for an every day child, but Caleb has CHARGE syndrome which can make some minor milestones seem so significant. From the CHARGE syndrome foundation website 'Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems which delay their development and communication. All are likely to require medical and educational intervention for many years. Despite these seemingly insurmountable obstacles, children with CHARGE syndrome often far surpass their medical, physical, educational, and social expectations.' Thefore, you can see why sometimes what others see as the 'little things' are no so little to us.
He still has a runny nose and we are hoping that clears up within a couple days and does not progress into anything else, so please keep the prayers up that this runny nose goes away!!!
Thursday, March 08, 2007
It is hard for him to sleep comfortably.