She Dances...

In an attempt to stay positive...

I guess I have not mentioned much about positives in Lillian's little life lately. Seems I've kept things pretty medical as of late. She is pretty busy, she L-O-V-E-S to be outside. On these very nice HOT humid days, I have to keep the front door locked because she wants to be out there. She most of the time sits on the porch and "talks" to the air. Very cute. She isn't really talking per say, but she has plenty of communication, just can't understand most of it. She has taken to taking us by the hand and showing us what she wants. She mumbles a LOT of stuff, but Lord only knows exactly what she's saying. She also is doing pretend play, she takes two objects and acts like they are having conversations with each other, also pretty cute. She is such a smart little girl and misses very little. I believe she understands most everything that is said and what is going on around her.

She is trying very hard to run, but still not quite there and jumping is still coming along as well. She loves putting everything in her mouth and chewing, but swallowing is still not happening. Her weight has been holding steady at 25 lbs for quite a while and she is starting to outgrow some shoes FINALLY! Wooohoo!

Some concerns I have, one of her ankles seems to be turning in, going to address that Wednesday with her PT. Her airway, of course. Anxious to hear back from one of the doctors about a more solid plan. Sometimes, I just wish they'd say, oh this happens all the time, but they don't. She is on a waiting list to get into the child evaluation center in KY. Her breathing has been good and we haven't used any nebs in a couple of weeks. So far, no ear infections for a couple weeks either. Maybe warm weather is the ticket? I don't know. Allergy testing has been put on hold until her stoma is closed. She did pretty good on our trip to the caverns, but did have a little tantrum at one point...I'm sure the other visitors loved it. LOL.

Reopened

The stoma site is almost totally reopened today. The black stuff is just the site. The open site. A small piece of very thin skin remains. She is coughing today.

Did I say this chapter closed??

Well open up the book again. This morning met us with surprising news, remember how I said it looked weird? Her trachea has reopened and that stuff I thought was stitches is not, it is some reaction to scar tissue or the actual tracheal track we are seeing through the skin. They rescheduled her for surgery in two weeks. We then headed over to the plastic surgeon who said her palate looked great, but he would like to be available to jump into the surgery if needed to do a graft to make a more permanent closure. That would push the date out a little farther. He also said we may need to consider that this may just remain open. OMW. A lot to swallow. I'm giving the short version here bc we are back on our way out...so there it is. I'll try to give more explanation later. Gotta run. I'm sure this evening will be difficult when I am letting things soak in...but what can I do but stay on the ride. My sweet girl.

There IS a first time for everything

Today, for the first time, in her short lived life, I gave Lillian a bath without fear of drowning her. She was able to splash, have her hair washed and be a somewhat "normal" little girl in the tub. You think it sounds crazy, but I'm trying not to cry. The smallest things bring such joy. She will now be able to go to a pool, play in the sand, and pass air through her tiny body the same as we do. It is awesome and heart swelling. Now.... I'm crying.

We follow up with the ENT and Plastic surgeon tomorrow. Will update soon.

Truly no place like home

Last night was truly a bad night. The nursing staff was negligent and just plain lazy. I did have the opportunity to speak to an assitant manager, but after some thought today, I don't think I will stop with that. Bottom line, if a child is admitted for having a trach stoma closed so that sats can be monitored....if there is a desat DON"T call in my room and ask "can I help you?" , or scream it three times. NOT at 11pm not at 12AM not at 4AM, NOT ALL NIGHT LONG. BTW, if there is no response from a nonverbal three year old toddler in a twin bed, certainly do not sit on your butt and IGNORE that there is an alarm coming from the room. SEND her nurse in when asked or send SOME ONE when it is asked of twice. AND NOT half an hour AFTER it was requested. DO NOT ignore me at the nurses' station and certainly please don't let me interfere with your idol chit chat so I can have a blanket to sleep with. The list is long and I could add a lot more, but I will stop. You get the drift. Basically, Matt had to have someone drive him back down to KY this morning and miss work again to drive us home bc I simply could not drive having had only two hours of hazy sleep.

The trach stoma is closed now and I'm hoping the scar is not too wicked. It looks like a really jagged t shape. She was pretty uncomfortable yesterday, but seems to be doing fine tonight.

There is nothing that feels better than being home and sleeping in your bed. Thanks so much for all the prayers.

The Final Chapter?

Tomorrow is hopefully the day we close the book on our friend tracheostomy. 12:45. God's will be done.