Tomorrow

We will visit a new ENT, a laryngologist...a specialist in the office of the ENT. Seriously...*shakes head* Anyway, hopefully we will get a surgery date. Snot continues to be an issue. I called to get her into the pediatrician (after I've tried to do all that I can to manage at home and it is just getting worse) and I can't get her in until Wednesday. As I examine my tired-ness, that's the best thing I can come up with..sorry, I try to think of those who are also in less than ideal situations and are struggling. It is just difficult and worrisome to have a little life that is so fragile. It is so hard for my brain to comprehend how it is to be sick ALL the time.

It seems

• that doctors' offices are incapable of returning calls
• offer no apology for NOT returning phone calls
• do not take the time to fill out FMLA forms
• do not make referrals when asked
• do not return calls regarding said referrals
• do not value commucication AT all

I'm a little annoyed, can you tell? That being said, we still dont' have a surgery date. Lillian is suffering serious snot issues that I can't seem to help with medication. I feel like I'm running but not going anywhere. Feeling a tiny bit overwhelmed with this life in general.

THAT being said, I'm so glad I'm not alone. God soothe my fears and settle my soul.

News

Sorta news anyway. I had a call out to the surgeon and hadn't heard back, so I called again today. Apparently, Lillian's ENT is out of town til Tuesday and they will call me Tuesday to set a date for the new surgery. Thankfully, we will not have to be seen in her office prior to the surgery date. I was just looking at her picture on the page and remembering how I felt at that moment. To look her and realize how seemingly chubby and perfect she looked, yet so many things were going so very wrong in her tiny body. It has been a difficult week here, for me personally. One of Bethany's classmate friends lost his eight year old brother to cancer over the weekend and a friend from my former church gave birth to her baby that had passed into the Father's arms on the same day. One of my close friends is struggling quite a bit and I want to help her and be there for her, but I'm not a very good comforter because I just find myself weeping right along. Lillian had a puking episode today and that just about does me in. It frustrates me and I know it is so unpleasant for her. I can be so grateful and so irritated all at the same time....ugh. I got information from our speech path regarding feeding tubes...did you know that tube fed kids are more apt to have reflux??? I know she gave me the information so I could be more informed and I was happy to receive it, but then after I read it, I wondered how in the world she'll ever have a positive eating experience. Rough week. Looking forward to spring break.

A Pulmonary Follow up

Lillian saw her Pulmonary specialist today in KY. It was a good visit. He thought she sounded great, which is exactly what the mother of a CLD (chronic lung disease) child likes to hear. There's always a but you know, though. As if getting and having a trach for three years isn't enough....and having surgeries that must be done to live a "normal" life are never ending. She again, will have to have surgery to close her stoma. The stoma is the opening where her trach used to be. It has never closed and will have to be closed surgically. While I know this is a very minor surgery, she will still have to be put out to have it done. Into the operating room again. I'm not complaining....really, it probably sounds like I am, but really I know it is not that big a thing, I just HATE my baby going under anesthetic again...it also scares me a bit. I know she is breathing and capable of breathing without the hole there...it's been tested.....it is just a bit scary to know that our little "extra" breathing room will soon be gone. I told Matt when I got home that it sometimes always seems to be something else, then I changed it to, no, it is ALWAYS something. Ok, maybe I am complaining...

On other fronts, eating and speaking are just not coming along as I thought they would....still nada for eating/swallowing. Our speech path strikes me as discouraged, but perhaps I'm reading her wrong. Oh well. Just another day in Holland.

I hope this just makes you giggle...

A better pic and quick report

She has strep. I'll take it! She is still miserable, but at least we can treat it.

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!