Babies B-A: 2 Boys & A Backpack: August 2011

Friday, August 19, 2011

Some pictures

Bedtime books

Camera close-up

Big laughs

Our doctor-in-training, with his patient "Snuggy Bear"

Our other exciting news last week that I never got around to posting is that Lalo is now sleeping in his own room, in his crib. He is doing great with the change and from the pics I snapped, I think he really likes it...

Friday, August 12, 2011

Adios Helmet!!

So, as of Tuesday, Lalo is officially helmet free! It seemed like it was getting snug around the sides of his face and we were tired of the Velcro always getting stuck to the floor now that he is a rolling machine. It is so nice to see his cute hair all the time :-) The whole issue for Lalo dated back to his days on ecmo, where he had to always lie on his back, with his head turned to the left. This position also gave him torticollis, where his neck was always twisted that direction. So even after he could move to different positions after ecmo, the torticollis helped keep his neck & head in an unfavorable position. The helmet doesn't change what's already done, but just provides a guide for which directions the head should fill in as it grows. At our last visit to the orthotist, Lalo had the last scan which provides the measurements of his head. It hasn't been easy putting Lalo in a helmet for the last 6 months (started mid-Feb), but it really has worked wonders for him. It is hard to understand from the numbers, but the images really show the transformation that the helmet has made with his head shape.

The inside line is 2/7/11 & the outside line is 7/27/11

This picture was taken 2/4/11 and gives you an idea of why Lalo needed the helmet.

And this picture is today 8/12/11 and shows a nice, round head under that gorgeous mop of hair!

Thursday, August 11, 2011

Neurosurgeon

We had a visit with our neurosurgeon last week. We were recommended by our genecist to see him to just go over a few things and make sure there were no issues. The first question was about a couple of bumps that we have noticed on Lalo's head in the last couple of months (I think we first noticed when he had the reherniation surgery). The second was the way that Lalo's forehead kind of indents on the sides. And the third was how his head is small on the growth charts. The neurosurgeon was okay with everything - the bumps are ridges where the bones meet in the spots where he had surgery. He doesn't expect them to cause him any issues, but we will watch them as he gets older. The indentations appear to be caused by a mild case of craniosynostosis, where one or more of the sutures in the skull fuses too early. For Lalo, he doesn't expect it to be much of an issue since it is a mild case of it and it should improve as he grows. Finally, the size of his head is expected to be smaller due to the injury to the brain and as long as it remains on the same path of growth, there is not an issue. The neurosurgeon did think it would be a good idea to get another MRI of his brain. As he said, it won't change the way we treat him, but since we made some predications of what would happen after the injury, it would be good to see what actually has happened. I think, from my understanding, that the prediction was that the damaged left side of his brain would not have grown and developed. He showed me the MRI and the CT Scan from those early days and how significant it was. We then talked lots about how amazing he is doing now. I was so tempted to bear hug this awesome doctor. My biggest memory of him is the day of Lalo's injury. I think it was close to 10pm that day when he came to the PICU in a suit and pulled us into a room to explain things and get consent for the surgery, which started a few hours later. We were basically told that things were grim and if Lalo had trouble in the operating room, there wouldn't be much we could do. Now look at our little warrior! I asked the doctor if he would have expected Lalo to look so good now & he said no, that the babies always surprise him.

Wednesday, August 3, 2011

Back to healthy

Poor Lalo got hit HARD with that stomach bug. It lasted close to 2 weeks for him and involved numerous phone conversations with his doctor, days of pedialyte, a trip to the ER to get fluids and run tests, xrays, and him losing almost a pound. The throwing up again was awful. You could hear in Lalo's cry that he was extremely discouraged and upset to be constantly sick again. And since it lasted so long, we were a little doubtful that we would ever get back to our happy place of no vomiting. But, as of two days ago, I think we are okay again. He is definitely refluxing/arching more than before he got sick, but we are on a good streak of him not throwing up. Unfortunately, it seems like we are almost starting from scratch on getting him to take purees by mouth, but hopefully that will get easier. For now, we will be concentrating on packing some weight on him. Then we will start working on condensing his feeds so he is not getting fed continuously.

We also had a helmet appointment for Lalo last week. We were hoping that he had grown enough that we could be done with the helmet. Unfortunately, he did not have a lot of growth over the last month. We are only 1 mm shy of where they want him to be, which is 5 mm difference in a certain measurement and what they consider as unrecognizable to the human eye. Obviously we are not far off at all, but since there is still room left in his helmet, they suggest he keeps wearing it. But ultimately, it is up to us and probably about 50% of people decide to just be done with it at this point. We decided we will keep it until Lalo is back to healthy and gaining some weight. So expect to see it for a few more weeks.

Unfortunately, with all the sickness in our house Lalo has missed quite a bit of his therapies. But he is now rolling like a champ and hopefully only a few weeks from being able to sit independently. He has also learned how to give kisses (see video) and can give a high five (with his left hand).

Here's some pics of the boys!