Inquiring Minds want to know

Lillian is extremely ill today. She was up all night and finally slept for about two hours from 4-6am. She has vomited nonstop and is running a high fever. I was able to get 75cc of pedialyte into her a couple hours ago. It has been a really rough night and day.

To clarify a cockelburr...I grew up in the country, and when the dogs got out into the woods they would sometimes come back with these prickly puffy things stuck in their coats. Some could be small, but others would be larger than a grape. You really had to work to get them out of their coats. We always called the burrs. Matt, however, calls them cockelburrs. Not sure if it is a real word, but that is what I was trying to describe, I know, not a very pretty picture, but now you have a better understanding of what is coming out of her or trying to anyway....

It is obvious that her stomach is causing her quite a bit of pain and there is absolutely nothing I can do for her. I pray this is a 24 hour thing and she is coming around the corner on this thing. UGH.

Home Health Agencies and update

Ok, if you are not interested in reading the psychotic rampage of this mother, you may want to skip to the next paragraph. We have been having troubles with our supplier of Lillian's medical supplies. I ordered apnea monitor patches for her two weeks ago and still have not received them, and being told every day that they would be here the next day. Long story short...they want me to strap her into the emergency straps of the monitor....I'm sorry, you'd just have to see that to understand it.....not going to happen...at any rate, once again...people who have no clue what it is like to care for a special needs child. It is very incomprehensible for me to grasp the mentality of these people. People who are pushing papers and have no clue what your child's life is like. Treating your child as if they are not a person, but a mere inanimate object. Of course, it's not Praxairs fault (the supplier) and it's not Clarian's fault (the micromanager) according to both companies. GRRRRRRRRRRRR

Lillian was running a bit of a fever this morning but seems to be doing well for the rest of the day. I took her to the doctor yesterday bc she ran a fever all day and acted miserable, but nothing showing up on exam. She is currently still napping. Her feedings have still not been going too well, and pardon the frankness, but her poops are looking like cockelburrs as Matt likes to say. My sister pointed out today that perhaps she may be teething....that had not even crossed my mind, but perhaps the culprit of the recurrent fever. Hmmm, maybe baby. I'm supposed to be giving her enemas every night to make sure everything is nice and soft and keeps moving.

She was so cute today laying in my bed on my pillow teasing me that she was in my spot. Too funny. She also dragged her Dad's guitar into the living room and played that for awhile. I'm sure he would not approve, but what he doesn't know won't hurt him, right? LOL.

Kentucky and a Puke Fest

We are back from the Kentucky cardiologist...who was FABULOUS. Superbly nice man. Did her echo himself, which I really liked. He said he didn't see any evidence of the VSD...wahoo---however.......there is another hole, that we have NEVER been told about, that 50 % of kids have. He says that one is still open and if it doesn't close they can do it in the cath lab. He said it should be by the time she is 3. He said overall she looks great from a heart standpoint and he would see her again in a year.

Now for the interesting part of the day....the kids have been in charge of taking all Lillian's bags to the car, for some time, and of course they are also very anxious to be in the car and waiting. Well, we were roughly 20 minutes away from the house when I looked back and found that noone had grabbed her suction.....I had to do a uturn on the interstate, go back home, so basically blew my time frame all to pieces. Get home, find out they didn't get the suction or the trach bag......the two most important items that we must have. Of course, MOTY didn't check bc this is a routine that we have had for a long time. Despite that we get back on the road and on the destination. We get off on our exit and I'm needing gas, running late and not sure where the road is that I was expecting to turn on. So this nice man gives me directions and as I'm standing there pumping gas, the guy wearing his big baggy shorts and ghetto shirt comes walking by and checking me out. Now, I'm not one to think men look at me. AT ALL. But it is difficult to ignore someone who is walkign right beside you and gooning at you. Anyway, I ignore him...BUT as he walks back by his is muttering things at me under his breath...flashing his big old gold teeth smile at me and I believe talking about my "fine you know what as I'm pumping my gas" you can guess it---make the rhyme. I was NEVER so anxious to get in my car and get out of dodge. He backed his car up behind me.....*shivers* yuck.

On our way home, Lillian puked most of the way....but that is par for the course. Thankfully she is good to go from a heart standpoint and we see them again in a year.

In 12 days we head back to pulmonary and ENT.

Lather, Rinse, Repeat...

This is how I feel sometimes....this post is probably going to be very similar to my last. Lillian continues to struggle with vomiting......AND constipation. I've decided this is her life and that is how things will be. As long as she doesn't start losing weight and looking sickly I'm just trying to go with the flow. The one troubling thing was, typically her night drips go undisturbed...however, this last week or so, she has been vomiting in her bed as well. Nothing like having to roll your baby all over the place and get her changed bed changed, settled back down...sure vomit fest is finished.....every.single.night. Makes for tons of laundry too, albeit a minor issue. Not complaining...just trying to explain. So, the vicious cycle continues with the constipation...so unpleasant. I think it is the worst feeling to be so helpless to do all that you can and still not be able to help your child. She also has had an ear draining, which if you've followed you know, goes hand in hand with the vomiting. Things have been moderately better today, but it seems to be a daily change, one better day, one horrible day. This has also halted feeding attempts which we were trying to accomplish, but oh well....

In other news, she is continuing to learn new signs and the big sisters treat her like a trained monkey getting her to do any and everything she will copy. It is cute, but you know kids, they continually make her do things over and over again and typically things that will not improve her communication skills at all...lol, can't seem to bridge the gap to them....

She is no longer receiving PT because no therapist in this county wants to take her case. Not really sure why other than the fact that they would only be with us until November. I've been told it's bc noone has openings....so I'm trying to not focus on the negative and hope we don't lose ground. Still feeling pretty confident that I don't want her to attend public school at age 3 due to the germ factor...but time will tell. Lots of new things coming up this month.

So that is how Lillian's world is turning these days.

Still holding the Title

Man have I been out of the loop. Back in the world wide web and loving it!! I can't believe that I actually thought I'd never have a computer in my home....LOL. That's realistic, huh?? Anyway.

Lillian is struggling seems day to day with vomiting and constipation. MOTY here messed up the dates for her new Cardiologist, so we are rescheduled for Aug. So two trips in August to KY, so far. I just took her to the Pediatrician just to check her weight and such and although she is no where near being on the chart, her weight to height ratio was ok. She weighed 22 pounds and was 31 inches long. She is highly enjoying the new house and is getting very brave on the steps...she has fallen down said steps now three times (MOTY) which like to gave us heart failure. She is very busy getting into all sorts of stuff and really wants to be outside, but I'm not sure that agrees with her entirely and did I mention the heat and humidity reek havoc on her?? UGH.

As the time draws closer for the new Pulmonologist, the fear I have starts to bubble up. It sounds insane, but I want her to be able to live without having a trach. Yet, I'm terrified of her not having it. Does that make any sense? She is alive because of that small piece of plastic. Terrifying and closing in on the reality of finding out what happens next. It is strange to have such a jumble of emotions about it.

Sometimes you just have to stop and smell the flowers...

By the way, blog friends, I am having computer problems and am not able to post on anyone's pages....I'm here, just computer challenged...going off the grid this weekend to get her fixed...I hope.

Just a quickie post

Lillian is struggling with feedings and constipation. Again. The move has been difficult and things we learned about little Miss are...
1. She does not tolerate heat and humidity AT all.

2. She loves swinging on the porch in her toddler swing

3. Can't figure out of farm livin' is making her junky, although her treatments are pretty low right now. Have had to run some toby last week, but she's junky.

We see her new cardiologist in KY July 20th. Going to the pediatrician Friday to see what his view is on the feeding/pooping front.

I'm just slightly nervous that I have cancelled all her appts up North and she hasn't seen any specialist since her palate repair follow up.

So, anyway, sorry this is brief, but it is still crazy here with everything. Hope to start catching up with all my peeps soon!