The last week has been very challenging, and somewhat discouraging. Josiah’s neurosurgeon has given us an “ultimatum” of sorts…
She is extremely pleased with his progress in all areas but his head size. It is becoming evident that his body is not learning how to process the excess fluid, as it is continuing to build up, causing his head measurements to skyrocket. Even more baffling is the fact that he is showing absolutely no signs of problems. In most cases, children will become irritable, sleepy and nauseous. There are also physical signs, such as eye problems and hardened soft spots (in infants.) The only thing we see is his head growing.
We know that the surgeon is desperately trying to avoid surgery, but is becoming convinced that we may have no choice.
A number of appointments are scheduled for next month. I’m listing them here, but the explanations may be too descriptive for the faint of heart. 😉
December 1 – MRI of the head and spine. He is sedated for this, as it usually takes about 1.5 hours. He has had this particular MRI done once before, and I found myself in tears, watching him wake up and recover from sedation. I know that it’s not painful, but it is unpleasant, because of the “recovery.”
December 4 – MMT is a muscle test… no pain, just a bunch of noisy therapists who try to grade his muscle movement. I guess that they seem to think that the more noise they make, the better his test results! lol I usually end up with a headache.
Renal Ultrasound to check the urinary system (mostly kidneys.) Painless. Unless cold gel = pain!
CMG. A long test for the bladder. His bladder is emptied by catheter, and it is then slowly filled with a dyed saline solution. He is hooked to monitors, and we watch for fluid leaking around the catheter to show that his bladder is as full as it will get. The end result is several charts showing pressures within his bladder. This will tell the urologist what sort of pressures his bladder will accept, and how it handles them. He usually sleeps through this test, although he becomes uncomfortable as his bladder fills, and often wakes up because of it.
December 16 – appointments with Neurosurgery, Urology and Orthopedics. (He will also be measured for a standing frame and “normal” braces on this day… steps to learning to stand by himself!)
The surgeon will review the results from these tests, and base her decision on them and his head size. If surgery is necessary, it would probably be to place a shunt in his head to drain the fluid, although we intend to ask if there may be another option that we could try before a shunt. Once a shunt is in, he will always need it… the mortality rates go up 30%… we are very concerned. I asked her how soon surgery could take place, and she tried to avoid giving me an answer – when I pressed her, she suggested the possibility he could go in the day after we meet with her – December 17th.
So, we would like to ask for prayers over the next month… that Josiah’s head measurement would level out, and that the test results would come back showing that that his various conditions are stable. As well as for our strength in this all. Unfortunately, this possibility of surgery, once again, falls right during an important and difficult time of the school year.
We do have moments of excitement, when small things become the highlight of my day. Something as simple as the flicker of a toe. I hadn’t seen that toe flicker for a very long time – it made me so happy to see even the slightest movement! And I have seen major changes in his interaction with others and play with toys. He has even added a rather flirtatious bat of the eyes to his oh-so-sweet smile!
So… I will update my blog as I am able. Thank you all for your prayers!