Big Week!

Next week is a big week! On Tuesday morning Noah has an MRI at 7:30 am. I'm nervous and excited-- he hasn't had one since he was 4 months old when he had his g-tube surgery. I am praying that the MRI will reveal what we suspect; that Noah's lymphatic malformation is for the most part external, and is not too extensive internally. So many of the LM kiddos I have "met" have really extensive LMs internally, but look better from the outside than Noah's.

We will be making a decision about surgery on Wednesday, when we meet with Dr. Perkins to discuss the MRI. I have a feeling Dr. Perkins wants to operate this summer, but I'm not so sure I'm ready for a big operation. It will mean taking a month off work (sweet deal), but I just don't know if the timing is right. I feel like if we wait until next spring, Noah will be 2 and we should be, for the most part, out of the woods for a tracheostomy. Maybe not. I just feel more comfortable waiting. The only reason I would want to do surgery this summer is if there has been extensive growth of the malformation up by his eye and ear, which we have noticed. I am not totally opposed to doing surgery this year. Dr. Perkins is so understanding with what our concerns have been for delaying surgery, and he has been very supportive and in agreement with us up until now. Even when we cancelled surgery for last November, he agreed it was a good choice.

But I'm totally getting ahead of myself, I should just wait until we get the MRI results back and converse with Dr. P. I'm anxious!

Noah is doing awesome with his eating! It took about 3 weeks after his T&A surgery to feel good again; man those were some rough weeks. He didn't want to eat and I was so stressed about what we were going to have to do with OT to get back to where we were. But he is doing so well! We are still supplementing his diet with about 240 cals of Pediasure a day (8 oz), but just until we can get his weight up a bit. He is a skinny little guy! Healthy, but just skinny like his mama (HAhahahaa)!

It will be interesting to see what the docs think about his feeding tube removal too! He is eating and drinking so well that if he continues to gain weight over these next few months, I will stop with the Pediasure and maybe even have his g-tube taken out. Oh man, what I would give to see that sweet little belly with no tube in it. To let him run around outside with no shirt on and not worry about him yankin' on that darn tube. To tickle him and squeeze him and not worry about pulling on it. To be able to blow raspberries on his belly without getting poked in the eyeball with it. Praying that he eats just enough to start gaining some more weight. Normally after a child has been weaned from their tube, the docs wait until the child is sick twice, and if they can recover on their own without needing the tube, then they talk about removal. Please pray that we are approaching this HUGE milestone!!

Should be a fun weekend-- heading over to Dad's in Olympia on Saturday and will be there until next Wednesday. I will definitely update after the MRI and meeting with the docs on Wednesday.