Friday, June 19, 2009

So much

Lillian is finally getting full volume feeds...wahooo. I'm a little gun shy to even type it out. I tooke her with me to Auntie Marcia's so the big girls could swim in the lake and it was really humid. I think it was not so good for her because today she is yucky. Her feedings are still going ok though. PTL. It thrills me to no end that she is not puking.

We are in the process of getting new therapists....our PT and ST are not going with us when we move. So I've made choices, just waiting to hear back from our coordinator.

Found out bc of her medical history she may be eligible for homebound schooling through the school system...that makes me a lot more comfortable about school.

We have dates in KY for pulmonary, cardiology, and ENT coming up this summer. I still need to schedule her opthamology but there is so much going on.

Thursday, June 11, 2009

How you doin?

video

Watch for the eyebrow lift....

Wednesday, June 10, 2009

Tuesday, June 9, 2009

PRAISE THE LORD










I think fever has left her little body. Thank you Jesus. She woke up fairly grumpy this morning, BUT-she got a full strength, half volume feeding last night WITHOUT pukage. Today she has had a full strength half volume feeding WITHOUT vomitous.....AND she has her PMV on. These are some pics I took of her this morning and she was not smiling at me when I was taking the pics, just in between---rotten. I think I was really just getting on her nerves.




BTW- she and I were in the bathroom this morning and she picked up a stick of deodorant that fell on the floor and acted like she was putting it on....I am just so amazed. Do all two year olds know where deodorant goes??? Tickles me to death.

PS- sorry for my made up vocabulary, but that's how I roll :)

Monday, June 8, 2009

The Verdict is in

We just got back from the pediatrician and he believes it is related to her ears. I thought her fever had broken at four this morning, but it was back with avengance by eight or so. Right now, she is crying and sitting in a chair trying not to throw up. They gave her a shot and we will take her back Wednesday for another shot. We are supposed to keep doing the ear drops, trouble is knowing if the drops are actually reaching the trouble spots in the tubes.

He did have a look at her mouth and he was so impressed. He said it was one of the best palate repairs he'd ever seen.

Gotta go, she is supremely unhappy right now. She needs her Mamma!

Sunday, June 7, 2009

Better but still feverish

Keep those prayers a-comin! Seriously, thank you all so much for the prayer. It just gives my heart peace. Lillian is still running around 102 and that's with tylenol and ibuprofen on board around the clock. She woke up in a bed of vomit this morning...(such a good mother) that I apparently did not wake up to. It obviously didn't disturb her or she'd have waken me...or I'm just a really bad mother and she cried herself to sleep. At any rate, she is still only getting pedialyte to "eat". Maybe tomorrow the fever will break. So far, no other symptoms are presenting themselves clearly.

Saturday, June 6, 2009

104 is a good number if you're talking about money..

Not, however, if you are talking about the degree of a fever that has been going on for over 24 hours. Upon phone conversation with physicians...it has been decided that as long as there are no signs of respiratory distress we will just continue to treat the fever and try to get her through Monday. We do not like ER visits. We shall avoid them at all costs. Please pray that this fever subsides and we make it through the weekend without a ER visit. She is absolutely miserable. This of course means no real feedings either. It will be pedialyte only until the fever backs down.

It's 2:15am

Lillian spiked a high fever earlier this evening. I noticed her sitting strangely quiet in her chair during her breathing treatment. When I picked her up she was roasting. I gave her ibuprofen and she laid around for the rest of the night. She fell asleep around eleven, and now here I am having cleaned up her puky sheets and switching out the feeding for pedialyte. Here I am wondering...is this her ears, is this related to the surgery, is this some other virus....is she infected from some bubble drinking...
I was sitting by her side waiting for her to fall back into sleep wondering...wondering if her stares were seizures or just the sleepiness you fall into before you go to sleep. If her jerky movements are because she's chilling or something else is going on. Oh, LORD, how the fears creep in. I wonder, how long can a little body handle so much before it can take no more. I sit here wondering.

Lord continue to hold her in your arms, give her rest and healing. Give me peace.

Wednesday, June 3, 2009

Back with Peace of MInd

I don't know if I feel so peaceful bc the surgery is over or because I really like the surgeon. He is just awesome. He said her mouth looked good and he would see her again in three months unless there are problems. He is connecting us with a pulmonologist, cardiologist, and ENT for the time being (which his scheduler is handling for us) so we can get to taking this trach out. He is very concerned with getting her speech and feedings moving. He keeps saying she is missing prime developmental time for these things. He evaluated her brachial plexus injury and said at this point, therapy is the best scenario, any intervention would really just torture her and be of no more benefit.

This JUST IN---she just successfully sucked out of a straw!!! WOOO HOOO!!

Decann here we come....

Tuesday, June 2, 2009

KY here we come...again

Tomorrow Lillian goes to her follow up appointment with the surgeon.

Thank you so much for praying, her feedings seem to be improving. We are not up to full feeds, but I believe we are making some headway. I thought the same thing yesterday and then at seven she puked the motherload. The nights have been kind of bad from an equipment standpoint, but I guess that's just par for the course. The house is slowly getting boxed up so now we live in a maze.....I can't wait to get that over with. Will remember to update tomorrow.