If you're wondering where we are...

Life has been so busy. I'm feeling very neglectful of Lillian's blog. I haven't posted anything in such a long time. Mostly, I get to sleep at night...which is a VERY good thing!! Seriously,though, just a quickie note to update how things are...let's see...Lillian goes to school in a private room with no other kids twice a week for one hour. She receives 30 minutes each of PT, OT, ST, and education time. That happens on Mondays and Thursdays. Tuesday and Wednesday she has speech therapy at another facility half an hour from home and Wednesday afternoon she receives PT and OT co-treat at another facility in Seymour. It seems that is all I get done all week is running to and from therapy. I don't know how I ever worked outside my home. Kudos to those Mamma's out there doing both. Days like these I totally and completely feel so grateful that she was able to have First Steps in our home for those first three years. Whew.

Feedings-well, not so good. Feeding by mouth is going very slow. While she enjoys tasting, she doesn't love to swallow. Speech---maybe just as slow. Not really saying anything more than ma-ma. These two areas in particular allow me to become easily discouraged. I know I know I know it will all take time...however, the realistic part of me has to look at the possibility that it may not happen. I know there are folks out there thinking I just need patience...I feel like I am, but you have to look at both sides of the coin from time to time. It's difficult.

She is making progress physically as well, she is trying more and more to jump and run, but I'm sure that will come in time.

As always, she is sweet and precious and loving and happy.

This winter has been much more gentle for my sweet other than little illnesses such as ear and sinus infections which really take a toll on her, but PTL no hospitalizations. She is, however, sick currently with a raging fever and unable to keep anything down. We will be heading to the pediatrician this afternoon. I leave you with a picture of her in her big girl bed, which she happens to LOVE!

A post that needs no introduction...

MOTY strikes again...

Folks, it is official. I am totally the winner. I know you are all thinking in your head that you are the MOTY. Well, today, I, yes, I have conquered all and am the big winner. So, today is a school day for Lillian. Now, on her first day of

school I got a speeding ticket....yes, a speeding ticket. First one of my life. Well, a short week later, today, I go out to heat up the van as there is snow on the ground and I figure it is only fitting as a good mother, to heat up the car. At some point in the trek, I have opened every door to the van minus the back. Come in, get Lillian in her coat and head back out to the now warm car. I get her buckled in, open the passenger door and turn down the radio, and then proceed to shut all the doors. Go around to my door, pull the handle and no good. Get that acrid puke feel up my throat and come to realize that ALL, yes ALL the doors have somehow locked after I shut her door. So there I am in the 30 something degree weather, baby locked in the car. One of my nightmares come true. True to my being, I begin to quietly panic and call my hubs at work. Already in tears I am asking his boss to speak to him. Through panicked tears tell him what is going on. World's fastest phone call ends and he gets here thirty minutes later. I stand at the side door with Lillian telling me in signs that I stink. I did not regain feeling in my ears until close to three oclock. This spurns her worse EVER drop off at school. Not my day. Praise the Lord for watching over us and keeping her safe. So- even though I did not lock the door, they locked and I now truly have a complex. If you are having a bad day and feel like a worthless parent..just think of me. You will feel better.

I leave you with some pizza loving Lillian pics.

Ok, sorry for the disorganization...I can't seem to move things around...is this a blogger thing or dumb me thing?

Happy Birthday My Big 3 year old girl!

Now, if I could just get her to SWALLOW the noodles...

We ARE alive...

It has been a busy busy time. Lillian has been sick going on two weeks now, but I really think she is getting better. Each one of us in the house is taking a turn with a really bad tummy virus. NOT fun.

We had Lillian's case conference for school and it was harsh. To say the least. According to them, she tests out in the range of about 50, and a "normal" range is 90-106. While I was anticipating being told what she was not able to do, it still did not make it any easier to listen to. Harsh. I went in wearing business clothes and I think that helped me keep a straighter frame of mind. The days that followed, however, were not so easy. I cannot explain it better than to say it was hard. It was hard. It is reality and it is hard. The short story, she qualifies for all services and they recommended her to attend classes 4 days a week half days. All along we have known this was coming. We knew this was the next step, we did have concerns about her attending a classroom due to her immunity issues. The director of special education services tried a little speech on me about how hard it was to let our little ones go off to school---HELLLOO----really is it hard??? I've only sent four children ahead of her to school. Good grief. I stopped her quickly and told her that I thought it would BE beneficial for Lillian to be in a classroom- BUT- it would not be good for her health. At that point we whipped out the letter from the pediatrician and the stopped her in her tracks. What a day that was, it was difficult all the way around. This is not an easy transition. I'm struggling with it on many levels. The compromise, well, she will attend school at our "home" elementary school two days a week one hour per day. She will receive 30 minutes of each service total per week, education, PT, OT, and ST. This will all take place after school when no other children are present, sort of. She will be alone in the room. Clear as mud??? I already have a ST eval scheduled for her with our former first steps Speech Path and then we will seek further PT/OT services at our local hospital. Life is going to get incredibly busy in December.

Her stoma is still open, although very very tiny, and we follow up with her pulmonologist on the 18th. I can't really believe it has been a month since it has come out. every time I give her a treatment, I'm always looking for a t-vent to put back on. Strange. It is very strange to put her to bed with NO monitors. AND- did you know she will be THREE in nine days. THREE???? So tickled to celebrate another year!!

It has been a while

Life surely has changed in the Halcomb house. You would think I would have more time, but alas, tis not true. Lillian has been doing great. (til today she woke with a 100.00 fever and vomiting..trying not to fret...) She has just exploded into this wild child. She is into absolutely EVERYTHING! There are days I spend just keeping her out of the trash. She is doing so much more physically, it is just amazing. I really just didn't realize how much that tiny piece of plastic interfered with her day to day. I think it is record breaking how long she has gone without puking through feeds. We are trying more and more different foods and such by mouth to try to get her eating. She will chew solids to mush but just will not swallow. She does great with liquids, but not solids. Anyone out there got any tips??
She is almost able to run now...it is too cute. We are scheduled for her IEP on Monday with the school system, but the closer it gets the more I am leaning towards not sending her and just seeking indepedent therapies at other agencies. This is becoming a very difficult decision for me to make. Matt really does not weigh in too much on this subject. It is hard to know what the best/right decision is for her. I'm leary of making the wrong choice.

As I type, she is in the kitchen messing around, so I have to cut this short...will update soon.