"OMG her button is gone!"

So Sunday after church Makily decided she would take a three hour nap. Allen got her up and put her on the couch in the living room. He went to hook her up and yelled:

"OMG, HER BUTTON IS GONE!"

Inside I panic because I am thinking....."How long has it been out?"

I could hear her surgeon's words echoing in my head.

"Wow Makily's stoma really closes up quickly when the button is out."

Since she had napped for three hours it could have been out three hours or five minutes. If it had closed up, well you can imagine what we would have to do then.

My stomach was churning.

Allen and I both run to her room. He finds the button in the bed....balloon deflated. I check it and there is a BAD leak in the balloon. So bad that I can see the water squirting out the side of it.

*sigh*

So I run into the den and start digging through all my g tube supplies. I am a freak when it comes to Makily's g tube stuff and I keep everything. When we replace her button with a new one (every three months or sooner if it's leaky or the balloon pops) I sterilize them and then I put them in a zip lock baggy. This way I always have something I can put in there if I am EVER stuck in a position where I can't get my hands on a new button. They aren't the easiest things to get ahold of by the way....especially if it's in a hurry. Been there done that.

I find a button that isn't leaky (the balloon just inflates uneven for some reason?). I decide I will put that one in since I don't have a new one.

Why don't I have a new one you might ask?

Well you see our home health company will ONLY send me ONE every THREE months. Every now and then there is a short period of time that I don't' have an extra, new button because I had to replace Makily's early for one reason or another. This just happened to be a two week period where we don't have a new one to put in.

Does Makily have impeccable timing or what?

So I go to put in the button, I slather it with lubricant and I try to get it to go in.

Makily is crying, my hands are shaking and I am pushing and pushing....it's not going in.

I try again after squirting half the tube of lubricant on the button and Makily's tummy.

It would not go.

I want to sit down and cry but know I don't have time to do that.

Then I realize I have a new button one size down (meaning the width of the button) in her closet. The home health company had sent it by mistake months and months ago.

I get it ready to put it in.

I say to Allen if this doesn't go in we will end up in the ER and by the time we wait and they get us back I doubt we will be able to get ANYTHING IN THERE, not even a foley catheter (they sometimes use those to hold a stoma open until something more permanent available...of course I don't have a foley at the house but believe me I am getting one now). Most likely Children's ER in Orlando would take us right back but they are two hours away.

Time is not on our side here.

I squirt more lubricant all over the new button and Makily again (she was a slippery little girl by the time I was done). Honest to God I prayed over the button and Makily's tummy (a quick prayer though).

I pushed the button into the stoma and it slid right in....EASILY on the first try.

I inflated the balloon, put gauze around the button and then BAWLED my head off.

It's strange to me how I totally hold it together until it's over and then I completely loose it afterwards. Allen sat Makily up and would you believe she squealed happily and clapped her hands together like we had just read her favorite book? She is such a trooper.

I had a "she'll never" moment the other day. Totally unexpected and out of nowhere. I was watching John and Kate plus eight. They had taken one of the older twin girls (I think it was Maddy?) for her "one on one" day with Mommy and Daddy. They went to the mall to get her ears pierced. As I was watching I imagined what it would have been like to take Makily to get her ears pierced once she had decided she wanted it done. I thought about what a great Mother/Daughter bonding day that would have been for us. I had my ears pierced when I was six and I still remember it to this day. Makily will never have that day with me. I cry just typing that. She will never be able to make the choice to have it done, and honestly I wouldn't put her through it either. She has been poked more than any four year old ever should so don't think it's fair for me to decide that for her.

She started some private therapies this week. We'll see how that goes. I'll go into more details about that in another post.

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Things are still looking very good in our favor for J. There are so many details and ins and outs to his case. If I were to update on everything going on with that most of you would be scratching your heads. It's all very confusing and at times contradictory. Just know for now things are in our favor. I did seek some professional advice which I knew would be brutally honest with us. I just wanted to know the actual legal aspects of everything from an unbiased person. It was all good news for us on that front too.

Sorry it's been so long on an update. I have actually been writing this entry for a day or two but kept being interrupted by one or both of the babies....I love it.

Court Today.

First off I apologize that it is so late and I am just now posting this. I have had a lot to take in today.

The hearing was heard by the magistrate and not the judge. I don't really know what difference that makes except we are now having another hearing in a month.

J's parents did not call or show up for his hearing. This is the first time they have no showed to court.

Everything was reviewed and they did discuss the fact that there is a family member in another state that wants J. The ICPC process (home study on that family member) was started last week. Typing that sentence just turned my stomach. Due to the fact that Allen and I have only had J for two months, they (social worker (SW) and GAL) initially were not even going to mention the fact that we want him. The courts look at us as no more than a "babysitter" until we have had him for six months (which will be Oct 2...I am going to start counting the days).

The motion was made to change the goal to TPR (termination of parental rights) with a CONCURRENT plan of reunification. One of the bio's attorney's said he felt it was "premature" to move for TPR and would rather they just make the family member J's guardian once the ICPC goes through. That way eventually his parents would still have the opportunity to get him back. The GAL spoke up then and stated that the family member adamantly stated she DID NOT want to foster J or be just his guardian, that if she was going to take him she would only do it if it was a straight out adoption. Then she went on to say that if the ICPC on the family member does not go through that the foster family wants to adopt J. My eyes welled up when she said that and I was SO thankful she mentioned us.

In the end the goal was not changed. There will be ANOTHER hearing in August (by the judge and NOT the magistrate) and at that time the goal will be changed. The magistrate out right said that while there was some progress on the case plan it was minimal and she doubts that reunification will be possible. I believe the next hearing will be in another county, this is to make it easier for J's bio's to be there (I am rolling my eyes after typing that by the way). I may be mistaken on that as some of what was said was a bit confusing for me.

The GAL is going to speak with J's bio's. She is going to explain that we want him. She is going to discuss things we would and would not be willing to do to keep J in our family. Allen and I have discussed some pretty heavy things today but we have not made any solid decisions. Let's just say at this point we are very desperate to keep J and we are thinking about doing things we swore we would not do before we started this whole process. We have already broke all the other rules we made for ourselves.......why not another one?

*sigh*

This is SO hard.

I am not sure when the GAL will be able to speak with them because no one seems to have any contact information for J's bio's that is current. I am hoping she will be able to talk to them next week at visitation...if they show up.

They also feel the family member needs to (and has a right to) know the complete and total background on J. There are problems that could pop up later on down the road and this is something they should know before jumping into this. She also said that since J has moved so much it may not be daisies and roses from the get go and so the family member needs to realize that now. How awful would it be for him to get moved to a family member that can't deal with him just to be moved again?

So that's about it. I have been able to think of nothing else but this today and I need to stop. I have stared at him and looked at him all day today wondering what it is going to feel like if they take him away. I keep catching myself trying to memorize his scent and the way his head feels on my shoulder. I don't know how long I will have that and I never want to forget.

Pray for us, pray for J and most of all pray for God's will. I admit I say that half heartedly because the "devil" on my shoulder keeps whispering "what if it's God's will for him to be moved thousands of miles away with someone he does not know". I have given this to God all day long, and I keep taking it back. I have to surrender this and know that no matter what happens, it was meant to be.

Have I said how hard this is yet?

Pictures and video tomorrow. Too tired to do it tonight.