Baffling the Dr's

This past week we have been to 3 different Dr's. Here is each update:

Dr. V - Ophthalmology: Spent 2 hours at the eye Dr, found out that Maximus can see out of both eyes right now. The left eye is definitely weaker and smaller and he may lose some vision in it over time. So thats good new! The Dr was really good with Maximus and very knowledgable about the colobomas in his eyes and how the are developing. We are really happy with this Dr and we will be back to see him in 6 months to make sure that Maximus stays on track with vision. 

Hanger Orthotics: We went to see if Maximus needs to get a helmet or not. This is the tough part, the Dr there said he doesn't necessarily NEED a helmet BUT he could benefit from wearing one, so its up to us as parents. I'm torn, because if his hair doesn't grow in because of his syndrome then I'll want to shave his head. And if we shave his head I don't want his head shape to be funny or bad. But do we want to put him in a helmet just to get his head shape more symmetrical? I don't know. He will only have to wear it for 10 weeks. So its not too long. Plus, our insurance probably will not cover it because its not a medical necessity. So we would be paying out of pocket for it which will be about $1500.  What are your (anyone who's reading this) thoughts on this, what would you do? 

Dr. U - Pulmonary: Spent a few hours at Primary Children's on Thursday to see about Maximus's Pulmonary Hypertension. We also were very impressed with this Dr. He explained what was going on as far as the hypertension and what could be the likely causes (airways blocked, vessels not getting enough blood supply). Then he asked us if Maximus snored, stopped breathing, breathed heavily, struggled breathing, tires quickly, ect.). We told him that he doesn't do any of those things and that he sleeps very peacefully and restful. We have never heard him snore, stop breathing or anything. And he is extremely active! He never stops moving unless he is asleep! So the Dr was pretty baffled (hence the title of this post). He said based on what we are telling him it doesn't sound like the hypertension could be caused by any of the normal signs, but just to be sure we aren't missing something he ordered a sleep study to be done on him. So we will be spending a night at Primary's on the 11th for a sleep study. If everything appears to be normal we will meet with a couple of cardiologists and our primary care physician and Dr. U to see if doing a surgical procedure is needed where they stick a cath up Maximus's carotid artery and up into his lungs to measure pressures. He also told us that he didn't think that Maximus would need to be on oxygen his whole life, usually the hypertension will correct itself over time and we could wean him from the oxygen. So I'm hopeful for that. 

This is my little man currently, sleeping...

Here are a few more pics from the week and another video

Me and the munchkin on the 4th of July

Playing with glow rings on the 4th of July. He was not too sure about the fireworks we lit. He kept putting his hands over his ears every time they went off! But he never cried, just didn't know what to think.

Eating ice cream with Grandma Rose

Watching Elmo 

Just being my cute self!

Anyways, that is currently what's up at our house! Also Tony is working A LOT, he is doing really well with Real Estate. Has a couple of people he is working with to buy homes. If you or anyone you know is interested in buying or selling a home please give us a holler! He would love to help out!

I also just became a consultant for Paparazzi Jewelry! I am very excited and will be hosting my first party at my moms house next weekend on Saturday the 14th! If your interested in coming, let me know and I can give you the details. Or if you can't make it but would like to host a party at your house it would be really fun, just let me know.