Maya Update

Wow! Maya is just doing amazingly well! The transition to "no-trach" has actually gone about as well as it possibly could. It has been ONE WEEK, and we have not had any major road blocks. She is actually doing better at night than she did with her trach...she is not needing ANY oxygen, AND since the night nurses do not need to mess with her so much (she had a lot of tubes and wires to keep her from tangling up in), she is sleeping through the night well. So, what are some new things about Maya??? She definitely snores at night, though I must say it is a pretty darn cute snore! She has a hole in her neck, that the doctors hope will heal up on its own in about 3 months, or she will require stitches. I thought maybe with the trach out she would get less of those "glaring stares" from people, but no, now she has a hole in her neck that really gets even more of a glaring stare! We have tried to use bandages, but they just fall off...so Grandma Fran sewed up some clothes to fit her trach site that are held on with paper tape that we use at school or church. But really it is best to keep it open so that it can heal. Oh well, despite the small hole in her neck, most people still say she is really cute...which is definitely TRUE! Maya also likes to make funny sounds with the hole...oh Maya, you silly girl! Otherwise, we still have nursing care this month, Maya is attendding school now full time and the staff is learning to care for her feeding and medical needs for next fall when they will not have a nurse with Maya. Best of all, Maya is loving the great weather and has a ton of energy!

Our lives are changing too! We no longer travel with nearly as much stuff as we used to. We do not have to lug around her enormous suction machine, extra trachs, and trach dressings, saline, humidified noses, passimier valves, caps, and suction catheters, AND we do not have to do trach tie changes every single morning. Dean smiled so big on Sunday as we loaded the mini van for church with one very small diaper bag for Maya. We are also planning on going RV/ camping this weekend and it is so wonderful to think of packing for Maya! We used to have to bring a ton of nighttime equipment when we went overnight places...before we bought our mini-van, we had to take our car and truck when we went to Portland. Now all Maya needs are a few Oxygen tanks (if she needs them), a few nasal canulas, her feeding pump and food, and her monitor...now that should be much easier. My packing list for Maya used to be 2 full columns long (12 pt font) on the computer. WOW...what a change!

Now we are preparing for life without nursing care and baby Teya (I think this is the spelling we will now go with) Nicole. We have already decided that her name means "peaceful sleeper", even though we have not found that definition in any book. There is very little to get ready, just cleaning the house and making sure that the baby clothes are ready to go...it is nice to have a lot already in the house. So you can begin to pray that our family will get some sleep this summer...I think it may feel like 2 babies at night for awhile once we lose our night nurses in July, until Teya sleeps better and we get used to Maya's machines at night time (she still feeds at night and has a monitor that will make noise at times when she rolls around or wakes up, and of course if she is having breathing or heart trouble.)

Thank you all so much for all your prayers and support for Maya. This really is a HUGE step for her! More independence from equipment and nurses ALWAYS being around her, and also just a higher quality of living. We are so grateful that Maya has done so well this week!