Monday, March 24, 2014

March Update

Sorry it has been a while. I know many have asked how the little guy is doing...we have been very busy since we returned from Boston.  Jacob is doing well.  Though overall his recovery has been rougher than we expected, he is pretty much back to his old self.  He has been off his pain medication for a few weeks now.  He still has pain periodically that he complains about. There are other times we can tell he is hurting but he doesn't complain, nor do we ask him so as not to draw attention to it.  He is a tough little guy, and I am so proud of him.  He has a follow up ultrasound here in Chattanooga on Friday that we will send the images to Boston for them to review.  Hopefully this will show them how he is responding to the treatment, and hopefully the lesion in his chest is shrinking.  Though it is not easy to see the lesion in his chest with an ultrasound, they do not want him to have to be put under for an MRI right now, so they are going to try to see what they need with an ultrasound.  Pray for him Friday, as although an ultrasound is non invasive, he does not like his back touched at all, and any pressure on the lesion causes him pain.  Needless to say, I am not looking forward to this, and hope it isn't too difficult for him.  For those who don't know Jacob well, here is a video of him at many only see him when he isn't well, and thus always think of him like that. But mostly, since recovered, he is playing, laughing, and happy.

As far as the rest of us go, we are doing well.  David is busy with school, and working on his National Board Teacher's Certification.  It is a big undertaking, that he has been working on for the last 2 years, and this years work is due in April, with testing to follow.  So he has been very busy working on this.  I had eye surgery a week after we got home from Boston, to refract my vision and repair one of my eyes that was damaged from an infection a couple years ago.  I am doing pretty well since and it is exciting being able to see for the first time without contacts or glasses.  They still aren't sure of the final result yet, and I may still need an enhancement surgery, but overall I am doing well.  Luke came home with a cough from Boston, and after 10 days of antibiotics, he got pretty bad diarrhea, which resulted in him getting a UTI.  After 3 days of very high fever and a miserable baby, testing and antibiotic shots; he is better, but is scheduled for a renal ultrasound and VCUG to follow up, both also next Friday.  Jacob won't be the only one unhappy that day, as I will have my hands full with 2 unhappy little boys after their procedures.  Asa is doing well, continuing to excel in school, and looking forward to spring and lots more playing outside.  He has been extremely helpful and sweet since we returned; I am so proud of my eldest.  Elena is also doing great.  Because of school cancellations from snow while we were gone, we made it home for David to take her to the father-daughter dance at school which she was ecstatic about.  It was a special time for them both.  She is looking forward to her birthday next month, and we hear all about it and her upcoming party daily!  They are all just growing up so fast...

Because it's at the end of the school year, with exam prep and testing, David will not be able to go with us to Boston this next trip.  My mom is going to fill in and come with us, as I will need help with Luke while Jacob is in the hospital.  David and I are very disappointed he cannot come, but I am thankful my mom is able to go.  We got our plane tickets booked (Mine and Jacob's again courtesy of Miracle Flights for Kids), and we are also reserved to stay again at the Yawkey Family Inn (patient and family housing at Boston Children's Hospital).  Our trip will be shorter this time, as we won't have all the appointments.  We will just fly in, have his procedure, recover and come home.  So we are scheduled to fly out April 27, and back home May 5.  Hopefully this time there will be no surprises, and we will be able to keep to this plan.  I am not anxious to leave half my family, and it's hard to think about Jacob going through all this again so soon, as he's just now feeling better, but we will do what we have to do to keep him healthy.  It's just hard to think about right now.
Overall, life has returned to normal, and that's how we'd like it to stay between Jacob's health trips and issues.  Our little family is amazing and we are so thankful for each one.  Thank you to all who continue to think of us and pray for today's miracle!  In closing, here are a few pictures from the past few weeks.  Love to you all from the Casteel's!

with their cousins at the park