Week 5, Day 3

We had a rough start to our day.  Both Mischievous and Monster Gavin came to the first two sessions.  I wanted to cry.  He doddled, spit out is food, tried to throw his spoon, hit me, kicked me, told me to go away…it reminded everyone again that we need help.  Even though it was a nightmare to sit through and watch Gavin behave so poorly, I was glad it happened now.  This has been our problem at home.  We do great for a week or two and then all of a sudden Gavin turns off and decides he just isn’t going to eat.  I know it is typical toddler behavior, but it is a behavior and needs to be corrected.  When it comes to eating, unfortunately for Gavin, he is not in charge, and we are pushing through!  The afternoon sessions actually went much better!!  Gavin was even able to work his way back up to self-feeding by the last sessionJ.  Again, the most exciting part is how well we are able to do in our last meal of the day at the Clown House!!  Gavin ate/drank 10oz tonight!!!!  It helped that he got a little present from a couple here in the house, Mike and Tracey (They have a little boy, Cash, in the NICU) just before our meal!  He was so excited to color on his new dry erase board, eating was that last thing he was thinking aboutJ. Not only did Gavin have a good dinner, but he ate/drank a record breaking 38oz of food and drink today AND today is a full week since I had to put any milk in his night pump!!!!

We have continued to use Cyproheptadine, which is the antihistamine that boost your appetite as a side effect.  It works best if it is cycled, and so we are going five days on and two days off.  It is interesting that Monday and Tuesday were off days which led to rough days on Tuesday and Wednesday.  I gave Gavin his first dose right after our first session today, so that should have kicked in by the third session.  It may have been a coincidence, but those last two sessions went great!  It will be interesting to see if this cycle continues.  Hopefully it will help us to get through these little slumps!

I talked to Dr. Clawson a little bit today about our 6-8 week time frame for being here.  It is hard to believe that next week will be 6 weeks!!!  Yikes…time has flown byJ.  She said that eight weeks tends to be a little too long to push a little guy.  We will have to see how Gavin does in the next week to see how much more fight he has in him to keep going.  Of course I would like to see eight full weeks of progress, but if the last weeks are going to be miserable for all of us with little to show for it, I am fine going home.  We’ll see!  I’m sure panic will set in when they tell me they are ready to set us free into the real world to do all of this on our own.  Even though we are doing relatively well, that is a scary thought!

We talked about attempting to texture grade next week.  Texture grading is the process of moving from pureed foods to a chunkier more solid consistency.  It’s like moving from Stage 1 & 2 baby foods to Stage 3.  What I have learned is that Stage 3 baby foods that you buy in the store are EVIL!!!  At this stage, kids need uniform consistency, whether it’s pureed or chunky food.  Stage 3 foods have a hodgepodge of foods of different textures and consistencies, and they can throw the kids off and they are more likely to gag.  It is better to fork mash food our run the food through a food processor to chop is up to an even consistency.  That way there are no surprises for those poor little tongues!  My plan for next week is to cook a bunch of meals that we would make at home and bring over to the clinic for them to mash down to a Gavin acceptable level.  So far Gavin’s diet has revolved around Imagine low sodium soups, mainly because the clinic does not have a full kitchen and so we have to work with what we’ve got.  My hope is that when we go home we will not be starting over with our own foods.  I would like to leave here as self-sufficient as possible so our transition home is relatively smooth.  Oh, we still have a long ways to go before this chapter in our life is over.  What long journeys feeding struggles are!!

There was an open house here at the Ronald McDonald House tonight.  Gavin and I stayed downstairs to meet current and potential volunteers.  I talked to one of the current volunteers for a while, and he eventually told me that the reason why he volunteers here is that he and his wife had a little girl who would be 25 now, but as a baby she came done with meningitis and only lived to be three.  You could still see the hurt in his eyes when he told the story.  It immediately brought me back to those long days and nights with Gavin in the hospital when he was initially diagnosed with NDI.  We are so lucky to have our little boy with us.  I will take on any challenge out there to just get to spend every day listening to him laugh and be silly.  We are so lucky that feeding is the only real challenge we have.  Gavin is such a loving, happy little boy.  Eric and I are very lucky parentsJ.