Spring Break

Spencer is on spring break.  A 2 week spring break.  I didn't want him to be stuck at home for 2 straight weeks doing nothing (the time that he spends in school each week is a good break for all of us) and since Elliott is still not able to leave the house, we shipped Spencer off to Tucson.  That sounds really harsh.  We actually asked him if he wanted to go, he said yes, so we begged our parents to take him and plan some fun things to do with him.  He was really, really excited about his trip to Tucson.

Michael's parents came up for the weekend and took him back home with them on Sunday.  He spent Sunday and Monday nights with them and then will be with my parents until Friday when they are bringing him back.  Prior to my hospitalization I had been away from Spencer for a grand total of 3 nights in his whole life, so this is a big deal.

Sunday night they had homemade fries.  What mutant potato did this come from?

Monday they went to the park and let Spencer ride his bike.

They also took pictures with all these animals.

Spencer woke up today saying that his ear hurt.  He mentioned to us last Friday that his ear hurt, but then it wasn't bothering him so we didn't think much of it.  We wanted to make extra sure that everything was OK since he's away from home though, so we made an appointment for him at one of those clinics in Walgreens.  They went to the zoo this morning and Spencer did fine, but it was confirmed at the appointment that he does have an ear infection.  It's only the 2nd one he's ever had.  I'm not sure how he got it because he hasn't had any congestion recently.  He's taking antibiotics and some pain reliever and I think (I hope) he'll be just fine.  He's with my parents now so we'll be getting an update soon.

We went to see Dr. Miloh and the nutritionist again today.  The good news is that Elliott gained about 4ish (close to 5) ounces in the last week.  It was equal to 20 grams per day.  Dr. Miloh was very pleased with the gain.  He said that if Elliott wasn't so far behind he would be happy to just have him continue at that rate.  The nutritionist (who was different than the one we saw last week)- not so much.  Since Elliott needs to continue gaining and needs to make up for the time he wasn't gaining enough,  she wants to see more like 30-35 grams per day.  Again it was suggested that I "just pump" ('cause, you know, it's so damn easy to do that 10 times a day) and bottle feed every feeding.  Again, I refused.  Dr. Miloh played mediator and we agreed that we will further concentrate the formula to make it 26 calories/ounce (we had been doing 24 calories/ounce) and bump him up to 1.5 ounces a feeding using the supplementer.  We're also going to have to break down and supplement in the middle of the night which we had not done the past week.  We're going back in another week, so we'll see what he gains on the new plan.

I hope that I'm not coming across as holier than though in my disagreeing with the nutritionist.  I don't want to presume that I know more about nutrition than her.  I just disagree with her methods.  It will not be easier to bottle feed Elliott 10 times a day, because he loves to nurse and he refuses to take a bottle.  He gets way more formula using the supplementer than he would in a bottle.  It is not beneficial to us as a family for me to be spending all my time pumping.  If it was the only option it would be one thing, but there are other ways we can do this.  I get the feeling that the only thing that matters to her are calculations and numbers and she refuses to look at the big picture or admit that we could make this work in a different manner.  I truly feel that if, in one week, we were able to take his weight gain from 7.7 grams a day to 20 grams a day without me pumping a single time or using a single bottle then we can certainly get it up to 30 grams.  Am I wrong?

In other news, the amino acid blood and urine tests were done and back and Dr. Miloh said that nothing in them indicated metabolic disease.  He also said that with the bilirubin continuing to trend down it is looking more and more like this could all just clear up and not be a real long term problem.  It's all just a matter of ruling things out and waiting to see what happens.  He is still monitioring numbers because even though the bilirubin was going down, the GGT was still going up.  He also said that we might be able to stop the ursodiol (the vanilla flavored medicine that Elliott LOVES that helps to flush bile out of the liver) at some point.

I bought Elliott a little St. Patrick's Day outfit a few weeks ago.  He'll be wearing it on Saturday, but since he won't be going anywhere that day and people won't be able to say how cute he is in it, we had him wear it today.  Know how many people mentioned it? Zero.