Week 4, Day 4

Well, Week 4 has been cut a little short for us…and I’m okay with that.  Both the feeding clinic and the Ronald McDonald House are closed until Monday morning for an intensive cleaning and disinfecting due to the flu bug that refused to leave the house.  I just hope the babies in the NICU are okay after a couple of the moms, Lacy and Tracie, came down with the bug.  The CDC requires that every surface be scrubbed down three times with bleach to be disinfected.  Hopefully with everyone out of the facilities for four days and this extreme cleaning, we will return to a very safe and healthy home again on Monday.  I am told that after four weeks at the clinic, both the kids and the parents tend to “hit a wall”.  Getting away from the intensive environment will be good for us at this point. 

While it was quite a dramatic week with all the sickness going around, Gavin continued to make progress.  He has done well with the self-feeding!  It is interesting to see how self-feeding seems to boost Gavin’s confidence with food and allows him to slowly be less guarded when it comes to spoon feeding.  Gavin has always used his tongue to block the spoon from coming in…poor kid is scared of being gagged.  When you are comfortable with eating, you keep the back of your tongue down and allow the spoon to go straight into your mouth.  Gavin keeps the back of his tongue up to prevent the spoon from going in too far.  The technique that is used to get around this guarded tongue is to tilt the bowl of the spoon upwards and over the tongue as you go into the mouth and then bring the bowl of the spoon down as the spoon is removed.  You are moving the spoon in a figure eight motion.  The amazing thing is to watch Gavin’s tongue block less and less as he feeds himself.  He likes the feeling of being in control!  Self-feeding is a little challenging though and can be tricky when we see glimpses of Monster Gavin.  Once Gavin seems to be struggling and taking too long to feed himself, we go back to feeding him to keep the meal going.

The most important thing I have learned from being at this clinic is not to doddle and linger over bad behavior.  If he refuses to take the spoon to feed himself or pick up the cup to take his drink, I take his hands and bring the food/drink to his mouth and count to three.  I do my best to make sure he gets a little taste of the food to know that “I won!” and then we move on.  Luckily, Gavin recovers very quickly with this method…I’m told not every child does.  This just prevents Gavin and I from getting in an Alpha Dog staring match!  I am mommy and I am boss! J

We made it through two sessions today before the clinic was shut down, and then we decided to get an early start on our vacation with Eric in Indianapolis!  I know this must sound like it is not a big deal to many other parents, but I have had a few little panic attacks about feeding Gavin on my own today and over the weekend.  That is three and a half days!!!  Typically, we weigh all of Gavin’s food and I input it into my fancy spreadsheet to know exactly how much food he has had in the day.  I left my scale at the Clown House and decided it was not worth it to go back.  So, I am approaching this weekend as a “normal” parent just guessing how much food their child needs.  It’s a little scary!  Again, I don’t know how to feed a “normal” child!  I am both happy and amused that I am considering Gavin a “normal” eater at this point.  We are still a little ways from “normal”.  We went to two different McDonald’s on our trip up here to feed Gavin.  At both, I bought him a happy meal…like he was going to eat it…and then I pulled out my pureed foods and IPad for him to “take his bites”.  The first stop went well.  He took a decent amount of PediaSure, carrots, and the chicken and rice I had pureed for him.  He even ate some ice cream and almost a whole chicken nugget!  The second stop was horrible!!!  He gagged on a bite so bad and a little came back up.  I just made the timer go off and we left.  By the time we got to Indianapolis, it was 8:00 central time.  Unfortunately, I quickly realized Indianapolis is on Eastern TimeL.  Gavin had his last meal at 9:30.  I considered just putting him to bed and hooking him up early with PeidaSure in the pump, but we have come so far to not push another meal no matter what time it is.  He did great here in the hotel room!  I brought a highchair with me so we can feed him in the room.  If feeding out in public doesn’t go well, we may be spending our entire trip in the hotel room eating!  This weekend away will at least give me some insight into what challenges we still have with feeding.  I will be able to go back to the clinic and get advice on how to make this work in the real world. 

Tomorrow, I think we will try to go to the zoo…assuming it works with feeding!  We just need a little fun down time.  Eric comes in really late and will meet us at the hotel.  We cannot wait to see him!!!

I got to talk to Jennifer, Noah’s mom, on our car ride up today, and I am so happy to hear that Noah is doing so well!  Thanks to Jennifer’s hard work and dedication, he is still weaned from his button and he gained a pound!  We miss you guys!!!