Ari did pretty good with staying awake yesterday. He slept only from 12-2:30 and then went to bed at 8pm. However, he woke at 11, quickly calming back to sleep and then woke up what seemed like “for good” at 1 am. After about 3 hours I fell back to sleep, I am assuming he did too because the next thing I heard was him starting to get fussy at 6 am.
We had oatmeal and yogurt for breakfast, both new things as I have been trying different flavors of yogurt with him. So far, he has liked everything (but I have stuck mainly to strawberry and strawberry-banana). He liked the oatmeal (blueberry muffin flavor) but got upset that he had to eat it and not yogurt. We got to the point where he would eat one bite of oatmeal as long as he got a bite of yogurt after. He wasn’t happy about it, but he ate all his yogurt and oatmeal!
We left the Mitchell’s house around 9:30 and headed to IKEA. I wasn’t looking for anything in particular, just really something to do. We walked around both floors and I found a few things here and there. I purchased my items while the line was short, dropped them at the car and then we went back in to get some lunch. I got some pasta for him and a chicken wrap for myself. He loved the pasta and even enjoyed some chocolate cake at the end. This little boy LOVES some chocolate, but I think the cake was he richest chocolate he had ever had because he only took a few bites before he was done.
Ari continues to improve with his liquid intake. I have figured out if I thicken his juice/water and put it in my waterbottle then he will drink it. The water bottle has some kind of valve on it that if you tilt it upside down, it only allows so much to come out – this has helped with decreasing the “drowning feeling” he often expressed. As long as the liquid is thickened then he seems to manage ok.
After IKEA, we still had 3 hours to burn before his dr appointment. We drove around a bit and then walked through Kroger (more so I could have a bathroom to change him and there was no Walmart/target in sight). After all that we headed to his appointment. We got there an hour early, but it was no big deal.
We saw the doctor a little early. He had called in a neurosurgeon as well. They looked at Ari’s last CT scans from China and the neurosurgeon thought that maybe he is having some aqueductal stenosis (narrowing or blockage of the flow of his CSF through all 4 ventricles). He thought this because his 4th ventricle seems to be “normal size” (which looked completely teeny tiny on the scan) but the other 3 ventricles are grossly enlarged. Neuro is under the assumption that his current shunt is really not functioning well due to the fact that he continues to have such extensive amounts of fluid. The only way to assess what is really going on is for Ari to have an in depth sedated MRI. If it truly is aqueductal stenosis, it can possibly be addressed through formation of new pathways to allow the fluid to flow properly and (if everything went well and stabilized) he may not even need his shunt at all. Both neuro and Cranio were determined to get the ball rolling (truly an amazing team that I felt very comfortable with). Cranio will reassess after neuro addresses the hydro.
So, currently, the plan is to have the sedated MRI on Thursday morning and then make plans that day for the next step. So, we have to be at Medical City Children’s Hospital at 7 on Thursday to check in and then we have a neuro appointment at 11:30 to get the MRI results and make a plan.
So, of course, Ari fell asleep in the waiting room and slept through his entire appointment (the doctors were impressed) and then slept through me putting him back in his car seat and the drive back to Fort Worth. He was OUT.
We ended up stopping to eat dinner at Pluckers … a favorite restaurant of mine since college. Ari quickly woke up with all the noise, tvs, sports channels going and he was very happy. He wasn’t happy, however, at the food I ordered for him. I got him grilled cheese with apple sauce, he would have nothing to do with the grilled cheese sandwich but ate all the applesauce. I tried to give him some of my chicken (I had gotten 1/2 Honey BBQ and half spicy for just this reason), but he didn’t want anything to do with it (even if I dipped it in the applesauce first). So, he ate applesauce and yogurt … not such a filling dinner, but he wasn’t whining for more (he did eat a large lunch).
We headed back to the Mitchell’s house and headed to bed at 9:00 (I was beyond exhausted). I’m really not sure who fell asleep first, him or me.
He woke up at 12:45 (seems to be a consistent time for waking) and he is now laying next to me with a huge grin on his face while listening to his bunny. Yep, that is how we roll!!
so, I have been slacking in this department, these will be long lists:
Ari Firsts: – first plane ride(s), -first time stuck in an airport, – first time to eat a kolache and American bakery items, – first time to Dallas and Ft.Worth, – first time to Target, – first time to Kroger, – first time to see an American dr in the US, – first time to eat oatmeal, flavored yogurt, applesauce, bakery goods, lasagne, penne pasta with red sauce and chocolate cake
What I have learned about Ari: a he KNOWS when you are at a place to eat (restaurant, etc) and he HAS to eat right then (I carry a banana and yogurt with me always) – he can be the definition of hangry. He consistently cracks himself up. He LOVES being kissed on the neck and thinks it is hilarious. He still LOVES his bunny.