Friday, February 8, 2013

Getting good news - finally!

Although we made the huge step of coming home in December, Joshua's progress with his GI issues has been very very slow.  He has been at the same level of feeds since mid November and we have not made any progress with lowering his rate of IV fluids.  My number one focus is getting Joshua off his IV fluids as soon as humanly possible so the last few months have been very frustrating for me from that standpoint.  Joshua had his second follow up at the GI Clinic at Egleston last Friday.  I was very hopeful we would make some step forward no matter how tiny. 

When the nutritionist told us his recommendations I was pleasantly shocked: increase Joshua's feeds by 5 cc every two weeks,  reduce his daily total fluid intake from 650 ml to 570 ml, and reduce his time on the IV fluids from 19 hours to 16 hours a day.  We get an extra three hours of freedom for Joshua every day - that is huge!  We can finally see light at the end of the tunnel with a real plan for progressing his feeds and reducing his IV fluids.  I knew it would happen eventually, but in my mind it was always a far off "someday".  Now we can say it is actually happening!

In other news, Joshua had his 6 month check up at our pediatrician on Monday.  These appointments seem so trivial after the GI clinic where we see multiple highly regarded specialists in an hour.  The nurses at our pediatrician's office do not know what to do with Joshua's lines.  They ask questions like "what is wrong with him?" and "will he get better?".  Our doctor is great, however.  I can tell he reads every addition to Joshua's file very carefully.  He is always up to date on the latest news from Egleston.  Joshua was in the 20th percentile for weight (up from the 10th percentile at birth), 70th percentile for height, and 50th percentile for head circumference.  So he is tall and lean with an average sized head - pretty good proportions considering his mom is short, not terribly lean, and has a much larger than average sized head.  (It's a trait I get from my maiden side, luckily along with thick hair to cover the aforementioned bulbous skull.)   

Joshua and I continue to enjoy each others company at home!  We go on walks as often as the weather allows.  He always rocks his sunglasses and I just know he feels so cool in them :)