So many doctors!

JT has had to go through a series of tests before the actual transplant can begin.  A week ago Monday he had a PFT - pulmonary function test - for his lungs at Scottish Rite.  It mostly involved heavy breathing into tubes that made him dizzy and act goofy.  I know, not like him huh?

Then on Tuesday we were at Egleston most of the day testing his kidney function via a test called a GFR.  This was done by injecting nuclear medicine into his blood and doing a series of blood draws via an IV over a 5 hour period.  The levels of the radioactive material were measured to make sure the kidneys were filtering properly.  He was not glowing that evening when he went to bed, so I am assuming all went well.

He also had an echocardiogram to check his heart.  This was done by sonogram so it was a little more fun for him.  The doctor gave him two thumbs up on his results...the kid has a good heart.

We met with his Child Life Specialist who will work with JT to make sure he is happy and has everything he needs during his hospital stay.  He says he and "Brittany" are tight.  She was pretty cute.

A meeting with the Financial Counselor was eye opening and jaw dropping so I'll spare you with the details for now.  Suffice it to say, the Webster Family may be selling some lemonade on a street corner near you this spring for a little fund raising.  More later...

The day ended on a high note for JT in a meeting with his new school teacher.  YES...we will be attempting to complete 7th grade with the help of a hospital teacher and the Cobb County hospital homebound program so he can join back up with his friends at Simpson MS in 8th grade later this year.

On Friday that week, he ended it with a last visit to the dentist.  He will have to pay special attention to his mouth care through out this process because a lot of infections can occur as well as he will have sores to contend with.  He also will not be able to wear his retainer (not that he did to begin with) and we're already looking at another round of braces when this is all over because we can see the shifting!

This week we were back down to Scottish Rite on Monday for a bone marrow biopsy.  They needed to test the marrow to make sure there were no signs of developing Aplastic Anemia or MDS - two complications from PNH.

On Tuesday, it was another trip to Egleston through the pretty snow for another series of meetings.  Sydney came with us this time to have a physical and her lab work (blood draw) completed.  She had an opportunity to meet with Brittany as well.  JT had another blood draw - not sure why, but didn't ask since every time we go somewhere with him, someone is poking him with a needle.  Our Transplant Doctor, Dr. John Horan, came to speak with us about the transplant process and ease many worries Jim and I have.  JT is in good hands and we left feeling very comfortable with all of Dr. Horan's decisions.  Before we left, we had a family psychology pre-evaluation.  They wanted to gauge our stress levels going into transplant.  I would love to interject with something funny here - but at the risk of sounding sarcastic, I will only ask you to consider if you would be stressed in this situation?  Seriously though, I think the whole team approach will be great for our family and its nice to know that our entire family is being looked after and cared for mentally as well as physically during the transplant!

Today, JT had an eye exam.  And tomorrow he is heading back to Scottish Rite for an infusion of Soliris.  Without getting into too much detail since I'm "bloggin' like no tomorrow" here, JT has been participating in a pediatric clinical study at St. Jude since November for this drug.  It is the only drug on the market approved for adults to help the symptoms of PNH and particularly important for those who do not have the option of a bone marrow transplant.  He finished the trial two weeks ago and will continue on the Soliris until transplant.  Next week we have one final meeting with Dr. Horan on Thursday along with expected labwork and meeting with the BMT nurse.

I'm not seeing my trusty spell check on this blog site yet, so bare (or is it bear) with me when I send these messages.  Those of you who know me well, know I will be fretting if I see a typo!  This was two weeks of updates and hopefully future postings won't be so lengthy.  Thank you all for following us, thinking of us and most importantly praying for us.

xo Sabrina