So, here we are starting off 2017 with a BANG!  Ready or not, here it comes!!
As I mentioned in my previous post, our boy Rees continues to be a medical challenge.  He is scheduled to have his lumbar shunt removed by the neurosurgeon this week on Thursday.  It is said to be a relatively simple procedure but it will not be outpatient surgery.  He will be admitted for at least one overnight.  

I will actually be relieved when it is out (it will be good to have one less thing to worry about) and I just tell myself that we will deal with the "What If's"  IF  they become an issue.


Assuming all goes well with the shunt removal, Rees will then go through with his previously scheduled surgery on the 26th for hardware removal and possible bone graft.  We will meet with the plastic surgeon a few days prior and at that appointment, Rees will have his health and physical and we will have the opportunity to ask our questions and hear what the plans are regarding the issues with Rees' skull bones.  That's really all we know right now on the medical front for Rees.  It is enough, for the moment.

Education-wise, we continue to work with him as he tries to learn sight words, reading, writing and math concepts.  

Moving on to our guy, Jonah.  He is doing pretty well and he is doing his best to soak up all that continues to be poured out on him.  He is a hard worker and he wants to do well but more and more he needs to be encouraged and pursuaded to "keep going" and continue to tackle the mountain of tasks he's being expected to accomplish.  More and more I question the goals of our public school system.  

Jonah continues to receive speech therapy in school and we are just waiting for our new insurance carrier's approval to go through for the speech sessions he had been attending through the hospital.  Jonah has made improvements with his speech; unfortunately he is still lacking greatly in this area.  I believe I need to do more research in the hopes of finding other methods to help him, but, in the meantime, he will be having a pharyngeal flap revision to hopefully resolve some of the physical obstacles he faces in trying to form words and make sounds.  His jaw structure and placement of teeth are also an issue so I will also be looking into ways to help him do exercises to strengthen his mouth/lips.  Simple mouth movements like puckering or manipulating the lips to make a whistling sound are very difficult for him, thus inhibiting his ability to make sounds such as for the "w", "d", "t", "f", "ch", "th", and "s".     

In addition, we can tell that Jonah has grown, which, of course, is wonderful and expected.  Unfortunately, the growth is affecting the overjet of his upper jaw compared to his lower jaw so we are already seeing a regression of the mandibular jaw distraction he had completed just six months ago.  This will be addressed sometime in the future, but until then, we are praying for improvements from this month's surgeries.  Pray with us, will you?  We'll keep you posted!!