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Ok, so we’re done with our round of appointments.

The appointment with Dr. Waner was good, Mary Elizabeth’s stitch line had some puss bubbles and they popped them and cleaned her neck up a little. We discussed what ME needs in the future and it looks like things are finally slowing down for us soon. Her next surgery will be on June 30th and if all goes well and continues to remain stable, that will be it for major surgeries for a while. She will still continue to have oral surgery or lasering to the tongue etc from time to time but nothing like we’ve experienced in the past almost 6 years. So that’s great news. This surgery on June 30th will be to surgically remove the mass that is left under her jawline. We call it the “ball” because it’s a little round area underneath there. Dr. Waner says it’s not all her condition, it’s a bit of scar tissue as well. Our guess is that she will have a drain put in and whatnot, and if you can remember how the chin surgery went…. it was quite the rollercoaster ride. So if you can start praying now, that’d be great! 😉

The sleep study went pretty well, but mommy did NOT sleep at all. It was a long night. ME was exhausted as well, as she went to bed late (took long to get her all hooked up- but boy was she a trooper about it!) – and she got up early because once 6am rolled around they turned on the bright light and told us we were all done. In addition, she had a very interrupted night of sleep. So yea, very tiring. In the picture you see she has gauze wrapped around her head, this was actually a good thing- usually they use a glue to put the leads on your head- but for kids there they use a sticky jelly like substance – which makes it kinda-stay but not totally securely so they wrap the gauze around the child’s head to keep them there. So it worked out better for when we washed her hair out. In the middle of the night they went to put the cpap on her, and she started swatting at the technician. LOL- it was kinda like she said “leave me alone dude I’m trying to sleep.” She did fight it for a bit, but eventually we tried different ones and she settled on one. Until… we turned the air on. Then she got very upset. Seemed like she thought it was anesthesia, so mommy explained and soothed her and we got it going. She did wake up 2 more times and tried to pull it off, but eventually did ok. Her breathing was definitely better with it on, so I can guarantee we’ll be getting a call with the results of the sleep study and setting up her medical supply company to send out a cpap for her.

While all this was going on, we found out that a family we know from church got in a bad car accident. She has two sons, one of which was there when ME went and is there again this year, and the other who is in his first year of preschool in Drew’s classroom. The older one unfortunately passed away from injuries in this car accident and the news was devastating. We were all shaken by the news and oh the tears did flow. We hugged our kids so tightly. It definitely puts things in perspective. It was also hard for Jessica’s mom as she was the teacher’s assistant in his class for 2 years now. Anyway, prayers for this family would be greatly appreciated.

Here is the link to his obituary:
http://www.legacy.com/obituaries/northjersey/obituary.aspx?n=Andrew-Kolan&pid=149121844

Well we will continue to update as things come up. Thanks for reading as always 🙂