Sunday, September 17, 2006

We made it home!

I made it home last night! What a long drive. I have so much to tell about the whole week. Hmmmm where to start?

Tuesday morning we left the hotel at around 6AM for a 8AM appointment, well a semi truck rolled over carrying corn bread on the beltway and we ended up being 2 hours late!! They knew we came from MN so they would still see us, but we had to wait until 1, so we went to the cafeteria and ate and walked around for a bit. His Neurosurgeon thought Josh looked great! We left that appointment at around 3 and headed back towards hotel we ran in and got changed and headed to the Outlet Mall in Hagerstown and had some fun spending money and shopping. I bought my son his Halloween costume there at Childrens Place, and OMG it is to cute!! I will make sure to take a picture of him in it.

Then we ate dinner at this awesome steak house. The whole meal was pleasant and the food was delicious! Then we headed back to our hotel and went swimming for a tiny bit and then watched a movie in hotel and hit the hay. We were all so tired!

Wednesday started out the same way we got up super early and headed back into DC to meet with his Opthamologist and Cranial Surgeon. It was a day of ups and downs. At his opthamologist's we found out that my son is totally blind in his right eye. The optical nerve is completely dead so there is no procedure to try to make it better. But his left eye has 20/20, so we were told to always take extra special care of that eye.

We were told 4 years ago that they believed Joshua would be blind in that eye within 12 months, and that also within that 12 months his eye would haze over and roll back and be completely whited out. Since that hasn't happened we believed they were wrong. Because many many doctors here in Minnesota have mislead us and gave us false information. Instead of just simply saying "we do not know, but will refer you to someone who does" they always try to take a guess at what it could be. Hence the reason we drive cross country to see doctors in DC. We were also told that this did not happen at birth that he has went blind in the last few years. Either as a result of Craniosynostosis, or a result of his lack of oxygen at Childrens Hospital when he was a baby. I have that story in a very early on entry in my journal.

After that appointment we headed a few blocks down to his Cranial Facial doctor. He also said he thought Joshua looked incredible! We have always been told that he would be having a 4th upcoming cranial vault, and we were told this time that they do not believe he will ever need another one!! :) WOW what a relief that was to hear!

He ordered a last minute CT scan at Georgetown for Thurs and he will be sending me a long detailed letter this week at home letting me know that he definately will not need it after reading the CT scan. Josh has a couple knobby areas in the back of his head that we have always thought was bone from the reconstuction. Well it is bone, but it is also a metal plate and screws that we are feeling.

So in about a year he will operate again to do the cosmetic stuff inside and out. For one he will shave down the bone in that one area and place the plates and screws where they should be, he will also shave down any other bone that has moved a little as a result of his head growing since his last surgery. He will also remove his scar by lasar. I cannot believe that either. His scar is very big right now especially since he has gotten bigger, it has stretched and there is no hair growth anywhere near it. His surgeon said once he is done with it that it will be small enough that his hair will grow over it to cover it. Another wow! ;)

Here is one picture of immediately after one of his cranial vaults, and for us to be told he will never have to go threw this again is such a relief to me!! I have always wished I could take that pain away from him and make it all better. I always feel so helpless as his mother not being able to do anything while he lays there in so much pain! Not even hold him for a few days. That has always bothered me because all I want to do is hold him and never let go. My son is a trooper I tell you! He has so much inner strength it is unbelievable!

We were also told that the world renowned genetisist who was retired but came to Childrens to diagnose him for us at a day old, was back in practice here in MN at the University of Minnesota, and that for one he thought Dr. Gorlin would love to see Joshua, but also to start a series of testing to see if he has yet another syndrome of some sort. I do not have a lot of details to it yet but wil let you guys know when I know more.

All in all the trip was great. The hotel was awesome, my kids were awesome. We ate some great food, spent ALOT of time in the car driving. But I am home now and even tho I have a new series of appointments that need to started at least they are here at home and not over a 1000 miles away.

I would travel however many needed always for the best medical care for my son, but it is still nice to know I do not have to go back out there next month for a couple months!!

My 17 year old and a friend of ours stayed here and my house is a shithole! I am going to be cleaning top to bottom for the next couple days. I would have been much happier to walk in my house and have it smelling good and looking good, like it did when I left. But no such luck!

All my kids go back to school tomorrow. Joshua actually will have his first day tomorrow since we were gone. I need to run and get a few things to bring with that stay at his school diapers, wipes, toothpaste, ect. His classroom this year has 5 kids which is the most he has ever been in, usually there are only 3-4. The kids in his classroom including himself need extreme one on one care. He also has a male teacher this year which is different. I think it will all go ok, and I know Josh is going to be so happy to back in school, he LOVES IT!

Well I am going to end this for now. I hope everyone had a great week!

Hugs, Robyn


queeniemart said...

SO SO glad you are all home and safe. So happy things went well for you and Joshua...he is an amazing boy and i am glad i have met him and you thru J Land!!!!

carolsixpac said...

ohh I am so happy to hear he wont have to go thru that again, he is just a little darling--and yippee on his good eye. Moms have internal instincts that are right on-I dont care what anyone says.........see Mom, you were right! woo-hoo!