Plodding along

I will start out with the typical apologies for the length of time between posts.  As usual, it has been a busy month with Joshua.  Let me catch everyone up on what we have been up to.

GI stuff - Joshua is scheduled to go back to CHOA on Friday, June 21 for a barium enema and GI clinic visit.  The barium enema will show us how things are moving through Joshua's system and whether he has any narrowings or strictures in his small intestine.  The flagyl antibiotic he is on has been helping reduce the number of bowel movements he has a day.  We still deal with really liquid stools which will, unfortunately, continue to be a problem for Joshua for some time. 

Feeds - Joshua is up to 85 mL of milk + hypoallergenic formula by mouth every three hours eight times a day.  If the clock is on a 12, 3, 6, or 9 (day or night), you know what I will be doing. He should be over 90 mL at this point if we followed the doctor's instructions, but we have to hold back if his stools get too loose - it is not good to push his system too hard.  You can end up taking steps backward.  Joshua is also getting chicken or beef baby food mixed with rice cereal twice a day.  He loves his baby food!  I hope we are able to start veggies with him soon. 

IV - Joshua continues to be hooked up to his TPN and lipids for sixteen hours a day seven days a week.  His rate is 24 mL an hour for those sixteen hours.  I am really hopeful we can go down to 12 or 14 hours a day at our next visit.  We learned recently that the suture reinforcing Joshua's broviac CVL has torn loose so his line is even more prone to being pulled out of position.  Joshua has become interested in the sterile dressing and has started to pull at it in addition to his IV lines.  It is so difficult to keep his little grabbing hands off of things on his own body.  We live in constant fear that his line will get broken or pulled loose and we will be on our way to the ER for a 2 day visit. 

Physical Therapy - we finally got Joshua started with physical therapy through the Babies Can't Wait program.  Our PT has been here twice and will be back this week.  Joshua is making really good progress with sitting up, pushing up, pivoting, and moving backwards.  He is so close to crawling and you can tell he wants to move very badly!  I think it will be any day now.  Joshua had an appointment at the Emory Children's Center Developmental Progress Clinic last week to check up on his development and delayed motor skills.  The therapist was impressed with how far he has come since we were there in January.  The next appointment in October will be focused on assessing his cognitive abilities. 

 



 

Playtime - Joshua continues to love playing with all of his toys (and he has a lot of them!).  He especially likes things with lights, sounds, and colors. One of his favorite pastimes is watching cartoons on BabyFirst TV (this is a sanity saving baby channel on DirecTV).  We let him watch TV while he is still hooked up to his IV in the morning and I think it is one of his favorite times of the day.  His favorite show is actually not a cartoon, but a British show called Tec The Tractor.  That little red tractor keeps him entertained every day while he is immobile - we are huge Tec fans around here!  Joshua loves riding in anything that moves including his stroller and definitely his new swing. 

  

 

 

 

 

Talking - Joshua started talking a few weeks ago.  His first word was DaDa and he wore it out for about a week before the next word came... MaMa.  Now any time he wants anything he starts saying mamamamamama over and over again.  Now that he is vocal, he is able to vocalize his displeasure about many things.  The little man has started showing a bit of an attitude.  I staunchly maintain I have no idea where this attitude could have come from!

 

Travels - Joshua has been up to Oma & Papa Pete's lake house at Hartwell several times.  He does wonderful on the boat, lying in the cuddy cabin sleeping or playing.  He does not do well at night in a different environment.  We went through several nights where we considered driving home at 3 am.  This does not bode well for our lake trip next week with Papa & GiGi at Lake Oconee.  I am bringing plenty of ear plugs with me for the family - they don't seem to believe me about how loud he can be when he's upset at night.

 

Bills - I haven't written much about the mountain of medical bills we have amassed over the last 10 months.  Although we have insurance, it certainly does not cover everything.  I have been working diligently for six months to get Joshua approved for Medicaid through the Katie Beckett program.  This is a special medical exemption program that does not consider your finances for eligibility.  You have to prove that without the parent or guardian's care at home, the child would have to be institutionalized to receive the proper medical care.  It has been a ridiculously frustrating, bureaucratic nightmare of a process.  But, a few weeks ago we finally received Joshua's all important Medicaid card!  This allows us to file Medicaid as a secondary insurance retroactive to 10/1/2012 so it will cover most of the bills United Healthcare does not (although we still have August and September to worry about).  Now that Joshua has his Medicaid card, he is eligible for other programs that I have to start researching.  The first one is the WIC program that will help us pay for the expensive hypoallergenic formula Joshua needs.  To apply for this, the first step is I have to take Joshua to the county Health Department for an assessment.  So today Joshua is making his first visit to Nellie B - otherwise known as the ghetto in Athens.  Should be interesting...