Cousin IT- not..lol

Funny or what? She was begging them to do that with their hair and glasses, what a goofy girl....

Just Trust.

Lillian's little granulation tissue is changing,not sure it I'll go so far as to say it's gone, but the ciprodex is making some change. I hesitate to say how great she is doing...she is doing so well. If we could just figure out the balance on this poop thing, it would be perfect. It just dawned on me tonight that my child no longer has a hole in her neck. It almost makes me want to cry. I am so thankful. I look back and cannot hardly fathom how much she has come through.

It is amazing.

I attended a church service Sunday at a friend's home and the pastor said in his sermon...I'm paraphrasing...'wouldn't it be great if we knew the outcome of situations that arise when we are being joyful because we know that is what we are supposed to do, not because we are really joyful? Won't it be wonderful when we sit at Jesus' feet and understand why things happen and we are TRULY joyful' WOW! Like a ton of bricks. Hit me right in the heart. I cried as he prayed the final prayer.

How much of the time I'm really grinning and bearing it bc I know that's what He wants, not bc it's how I really feel. I know there is a purpose...

I also had a conversation with a new friend and she was sharing a difficult situation she was going through and she said to me, "I know He just wants me to trust him" "I just have to trust Him"

I have said to myself and others, many times, I must be missing something..it seems that I'm just not learning the lesson God is trying to teach me.

My friend, Deb, made a necklace for me some time ago and the words she stamped in it were TRUST.

I think it will be a while before I can truthfully say I'm joyful for EVERYTHING that is going on. Hey, I'm human and sinful and selfish. But I think I'm finally fully trusting.

I know these thoughts of mine are scattered, but it's the best I can come up with at the moment.

First time in the POOL

Today I took the kids to Ceraland to swim. We only got to stay an hour, unfortunately, as a thunderstorm rolled in. But we got some good pics, and once Lillian got used to it, she was a maniac, I could hardly keep hold of her, even after she fell head first, all the way in, (I almost had a heart attack, but had to remain calm on the outside) She did really well. Didn't even sputter. First time since birth she has ever been submerged. She finally got to waving at everyone and making friends, but I tell you, she was NOT letting that water slow her down. This alone caused me to have to be with her constantly. The water came all the way up to her chest, I think I will need some back up next time...whooped.

I think

Right now is the healthiest you have ever been. I look back at old pictures and see this tiny frail baby, struggling to survive. While you are still very pale, and still trying to learn how to move that tiny body of yours, you look so much better. I remember that first year, expecting at any moment you would die. There, said it. Now it rarely crosses my mind. Perhaps it is a protection mechanism. Just don't go there. Tonight I was impatient with you, I was tired and feeling like I needed a "break", but then you do the smallest things that make me smile and I instantly let that feeling fade away. You are such a blessing and a joy to me...my heart aches it is so full of love for you. You have brought something even more special to my life and each one of our lives. I think it is difficult for anyone to be around you and not be in love. I still struggle with the unknown, but.... I think I've begun to let go of some of the things I grieve you may miss out on...because it is ok. You are special, you are different, and that is OK. It is not bad or worse, as some might see it. You will always find joy in life where others will not. I love you. My life may not have turned out the way I thought...but I would not change it. Not a moment. Love, Mommy

A little bit of prayer

Get this image imprinted in your mind....now, close your eyes and imagine her in a high chair. We sit down to do our evening of family Bible study, and I ask, "who would like to pray tonight?"

I survey the room only to see my tiny tiny girl slowly raise her arm in the air. I say, "oh you do? you want to pray?" She nods. I say, "ok, say what I say" . She clasps her tiny hands together and bows her head into them. I say "Dear Jesus", she says, "uh uh", me, "be with us tonight", her, "uh-uh-uh", me, "thank you for this day" her, "babble babble", me, "AMEN", her, "a-ME". No better "words"... and Jesus smiled.

Oh, granulation tissue, why must you interfere?

We made our follow up trip to KY with Lillian for her second stoma closure. It looked great until one day we took off the gauze and there was this little bubble. Like a little flesh bubble. It looks awful, truthfully, and weird. It did not garnish good looks from Dr Specialist ENT. (did you know there are specialists within a specialty? I love having this information...NOT) Anyway, she said she had just attended a lecture or class or whatever...probably a CME on stomas and they had recommended using ciprodex drops on the stoma and it gave great results. So, that is what we are going to start doing and see her again in two weeks. She said she just hopes that it is not growing on the inside as well......EEK GADS.

CRIKEY. I think that is all I can really bring myself to say now. ugh.

Good Reports

Dr. Heart was very pleased with Lillian's heart today. She had an EKG and Echo. I love that the doc actually performs the echo with Lillian sitting right in my lap. He said her coarc repair looked great. VSD really is closed. PFO is still open but causing no enlargement of the heart at all...he doesn't need to see her for TWO years....um yes, I said TWO years. Can you say WOO HOO? She had no thickening no enlargement. YEEEHAAAAWWWW.

Glad to have that one over with. So relieved.

I LOVE monies!!!

Lillian got some money from her Paw, Then she snatched one of the girls' dollars...

OH, Papaw, She LOVES money...that' s a one AND a five....lol

Hmmm

We have returned home, trach-less. PRAISE. THE. LORD. Once again Lillian has taken us on a ride like no other. It appears that the hole began to heal again on it's own. Last Friday when it was so huge, I placed gauze and tape over her neck because I just couldn't look at it. It made me have anxiety attacks just seeing it. The doctor went in and did a scar revision. It all looks to be infection related. She could not push any air through the hole at all. They reinforced the incision and put a pressure dressing on. She didn't want to pull too much skin so it doesn't pull and make a wicked scar. If the seems somewhat confusing and hard to imagine, don't feel bad, bc it does to me and I'm living it and don't quite have the words to describe. She also did not do another bronch bc she just didn't want to mess around in there and cause unnecessary swelling. She is guessing that perhaps it did open and started healing up on it own.

She is pretty much looking like her self and acting pretty happy. YOu should see the monstrosity of the bandage on her neck. I am emotionally tired which makes me physically tired and it doesn't help that I don't sleep on the nights before surgery...go figure.

I had gotten a letter from her cardiologist to schedule a follow up appointment and I told Matt how I started to feel a little fearful about it. I don't look for negative things, in general, but it just seems that we are up then down and up then down, I have no desire for her to have to go into heart surgery again. EV-ER.
I will continue to take comfort in the power of prayer and how awesome God is. I know His hand is on it all, it's just hard for me to take my hands off....

Thank you for your prayers, love, and support.

The journey continues....

Surgery Update

Tomorrow at one, Lillian will undergo surgery again to close her reopened stoma. This will only be the ENT. She feels confident that she can use neck muscle tissue to close. She said if she gets in there and finds there is not good tissue, they will replace the trach...pause for puke in the back of my mouth....but just until they can coordinate a surgery to take tissue from her leg. She said, the best procedure would be the leg graft, however with the time issues, she feels it's worth a shot to try the neck.

I do not intend to spend the night in the hospital for the night this time just for them to "watch" sats. Since noone actually did, I see little point in going through that charade again.

Up the hill we climb.

Who knew....

This little angel...ahem...would use this bucket of water.....

to wash in her "new to us" washer/dryer

this poor little creature....

When all was said and done, I had to hold back hysterics of laughter. You can actually spin the buckets in the w/d...she came to get Bethany and show her what a good deed she did....

Gracious me. Steph, I think this should probably go into qualifications...

Sisters, there were never such devoted sisters...

I wish we could have gotten the picture of Lillian when she first got up there with Madeline to look at the scrapbook, she put her little arm around Madeline and was just so tickled to be looking with her...it was so cute...