Specialists...

September 26,  2011

September is going by so fast!  School started and we have seen almost every specialist that Josie has during this month.  Makes for very busy days and weeks.

Josie is doing well and seems to be turning some developmental milestones, of which we are so extremely excited to see.  She has started really sitting up on her own - for long periods of time.  Once she gets leaning to the left though, she can't catch herself due to the weakness in her left arm.  So even though she is sitting, we are still right next to her the whole time, she doesn't need any bumps and bruises from falling over.  As for her speech, she has started to say "mama"...not necessarily related to her actual mama. :)  She uses the "mama" sound for when she is happy and babbling as well as when she is hopping mad.  We've started to hear a few other sounds, but that is the main one right now, I must say, it is precious to hear!  As for other things she is doing, she is starting to love the simple baby games, such as peek-a-boo and leaning backwards because she wants to go upside down and she is learning that she can make fun sounds by pounding her hand and foot on things.  These are all great things to see her start doing and does our hearts good to see her learning and developing.

The reflux issue is back with a vengeance.  We had quite some time where the reflux was hardly happening - we weren't even carrying burp rags around with us anymore.  Then one week it started up again - nothing changed in her care, but it came back and has been non-stop.  Mornings are the worst and tend to be more painful and traumatic to Josie with lots of crying.  This last week has been a bit worse because she also got a cold and the drainage made her reflux more than usual, plus we were having to wipe her nose too.

Today Josie went in for an Upper-GI to see if something was triggering her reflux.  They do this under fluoroscopy and inject barium into her stomach through her g/j tube.  The procedure was going along fine, aside from Josie not caring for being strapped to a board and being turned almost upside down, but then they decided to add a little more barium to her stomach for better imaging.  It was like Josie was a volcano and barium came spewing out of her.  It was everywhere!  Needless to say, they got a good image of what happens when she refluxes!   Unfortunately, the PA that was doing the procedure said he didn't see anything out of the ordinary and that perhaps it is neurological.  Back to square one.

Last week we met with Josie's Neuro-surgeon that replaced her bone flap in her skull.  This was a follow-up visit to the surgery that was done in June, to see if her body was accepting the bone and healing.  As soon as he felt her head, he shook his head and said that the bone didn't take, her body was absorbing it.  We were definitely bummed, but thankfully God had already prepared us for this news.  Several weeks ago both Marc and I had started feeling soft spots on Josie's head and as the weeks continued the spots were getting softer.  We had a feeling that the bone hadn't taken and already had time to process this information - the doctor just confirmed it for us.  Aside from this news, the doctor was extremely pleased with Josie's development as well as he is in agreement with her oncologist that the chemo is working. 

What happens next?  Well, Josie now has the same soft spot, so we are just careful with her on that side and the doctor has ordered a helmet to be made for her.  Not so much for protection, but more as a shaping helmet.  Time will tell if it will mold her little noggin.

This week was her ophthalmologist appointment.  We have been worried about Josie's left eye for the last couple of months because it can tend to wander.  The girls have dubbed it "Josie's funky eye" thing.  Thankfully the eye doctor was very pleased with Josie's eyes and the progress she has made since the last time he saw her.  She does have some wondering in her left eye, but hopefully patching her eye for an hour or so each day should help strengthen her eyes.   She also has some peripheral damage, but at this point, he is just going to put it on the "watch and wait" list in her chart.  Her sight seems to be appropriate in all the other areas.  We are thankful for sure, now we just have to get her to leave her patch alone.

Over all, we are so glad to be home and getting into a routine of "normal" life.  We are praying that we will not have any unplanned hospital stays this year.  After this month, hopefully life will slow down - at least as far as appointments go.  

Josie is a true gift and we are blessed by her daily.  Thank you to all who are continuing to pray for us, we are still in need of it and know that God is hearing these prayers for us. 

Blessings,

Marc & Darcia