Back to the real world.

Well our weekend was great. A few hiccups here and there but for the most part we had a nice relaxing time.

Saturday we went to Typhoon Lagoon. They had a "Lazy River" that we floated with the kids around several times. Makily LOVED it and so did J. Only bad thing I can say is that when you are getting INTO the Lazy River, if it's busy....the people can be like vultures waiting for tubes. I swear I almost got knocked down several times and I was holding Makily or Baby J. People can be really rude sometimes. It was good once we got in though and I was able to ignore the rude people and just relax.

*aaaaaaaaaaaahhhhhhhhhhh*

We also rode a "family water slide". Makily and J didn't seem to care for it much so we went over to the wave pool and for a while it was very calm. They have this MASSIVE wave every 15 minutes and for some reason they had stopped doing it. The kids played in the water and had a great time. Then they decided to start "the wave" again......it was signalled by a loud HONK. Once it started we realized that even though we were sitting on the very edge of the pool as far away from the wave as possible, we knew we better get OUT of the way. Trishtwo was sitting holding Aubrey (remember we are in water that is no deeper than a foot or two). The wave came and smacked Trishtwo right in the face.....all the sudden I see her feet go flying up into the air, her hat was ripped off (okay NOW I am laughing) and little went Aubrey drifting out to the shoreline with a look of horror on her face. She had a life vest on and was fine but it scared her. She said "Auntie Trish, I drownded".

After that when the horn honked, we all got up with the kids and let it go by.

We went back over to sit and relax a bit and Makily was in such a great mood. I got several pics of her just smiling and talking to Aubrey (she photo montage below!). She was so happy and she really LOVES the water. It seems to relax her.

Sidenote: Can I just say that sometimes people's bathing suit choices really surprise me. I was embarrassed and mortified several times. I saw more hiney and cellulite this weekend than I think I saw anything else. Don't get me wrong, I am FAR from perfect myself but you can bet you won't find me in a two piece, thong ANY day! The men in tight speedo's really cracked me up. I often wonder if they look in the mirror before they went out that day?

Sunday we went to Blizzard Beach.

Things were nice until we decided we were going to go on a "family tube" ride. We go up and see there is a 30 minute wait JUST TO GET ON the "ski lift" to take you up to the ride. There was no way we would be able to carry Makily all that way. So I told the people running the ride that Makily was disabled and they moved us to the front of the line. After MUCH confusion they explain that Little J and Aubrey (Trishtwo's youngest age 2) are too little to go (although the ride was described as a family tube ride...I was thinking a flowing, fun....well tube ride that I could hold the baby/babies on my lap). We grapple back and forth with them and finally realize there is no way they can go. So Justin said he would stay with the two little ones while we took the rest of the kids to the ride. We get off the ski lift to where the ride is and there is yet ANOTHER LOOONG LINE.......ANd we had to carry Makily through the line. So imagine we are in a HUGE cluster of lines for several different water slides, it's hot as you know what, we had to loose half of our group cause our kids were too little, and we are carrying 35-40 lbs of Makily when Cameron (Trishtwo's oldest age 4) says "Mommy, I have to go potty".

Poor Kid.

Trishtwo says "Cameron honey there is no where to go up here and if you have to go that bad you are going to have to go on yourself because there is really no way down right now except on the slide". Now Trishtwo was only half serious, not really expecting Cameron to pee on herself right then and there in the line.....but well...Cameron did. I look over and Cameron is standing with her legs apart, her butt stuck as far out behind her as she can get and she is peeing on the ground. I glance behind us and see about 10 people watching Cameron pee in the spot that they will soon have to walk through as soon as the line moves. The look of sheer terror on their faces was priceless and it was all I could do not to bust out laughing.

I look at Trishtwo and say "I am sooo blogging this".

Allen looks over to see what I am cackling about and goes "ugh, gross" and moves up. Trishtwo is REFUSING to look behind us as she is going to pretend she has no clue that her child just peed, right there on the ground in line. Finally the line moves and I kid you not, there was a HUGE gap behind us, as everyone was trying to avoid stepping in little Cameron pee.

About twenty HOT, SCORCHING, arm crippling from holding Makily minutes later they come over the loud speaker announcing that the ride that we were going to go on.....yes the ONLY ONE that Makily could ride up there was SHUTTING DOWN!!

ARE YOU KIDDING ME!?

So we turn around to go BACK the way we came and of course the crowd is HORRIBLE, all these people trying to get back down after being up there all that time and riding NOTHING. Cameron kept saying "there's too many people"!

I go to get back on the dang ski lift to get Makily down and they have to send for the "gondola" for Makily to ride. For some STUPID reason they ONLY let handicapped people ride down, everyone else has to take the STAIRS FROM HELL. They would only let me ride with Makily so poor Allen had to huff it down the stairs. While waiting for the wheelchair and gondola to come up a lady and her son come over and are waiting for the rest of their party to come up and get off the lift. They start chatting and say how awful it is that the ride went down. I agreed and said "yeah we waited in that line for nothing too". Then she asks what we were waiting for now. I told her we were waiting to go down. To which her son replies "Oh no, you can't ride this down, you have to take the stairs". So I say "No she needs the wheelchair so we are waiting for that". He looks at Makily and then looks at me and says "Why does she need the wheelchair?" I pretend not to hear him. Then he asks his mother "why does she need a wheelchair?" Again I am pretending not to hear a thing. His mom says "Well because something happened". He then says "Well what happened". Then she says "It's none of your business". Then he tells her yes it's his business and then she very quickly told him to shut up.

CAN YOU SAY AWKWARD MOMENT!?

Anyway we finally got back down after what seemed like forever. When I got off the ride the ski lift I really though my feet were going to incinerate right there on the pavement. My feet are a mess as it is and after walking on hot pavement and grinding them on the bottom of the wave pool while holding a baby or two, they look like a took a cheese grater too them.

Once again I have gone too far haven't I?

We took the kids back into the "kiddie area" to play in the water some more and then we retired back to the hotel. Of course we were exhausted from the long hot day so we all took a nap. I wake up two hours later to the fire alarm. It would turn on, then off, then on, then off. I called the front desk and they assured me we were not on fire and that it would not happen again.

Well this morning at about 5:30 AM.....guess what went off?

You guessed it...the screeching fire alarm.

Now Makily can sleep through anything but Little J will wake up and at that time of morning he has a hard time going back to sleep. So each time it went off I was ready to go knock someone out. This went on and off for a good 10 minutes before I called the front desk and very firmly thanked them for waking up my seven month old SEVERAL TIMES to the point that now no one can sleep!

She said "ma'am we're sorry, it wasn't intentional, our alarm is broken and they are trying to fix it. ".

We won't be staying there again.

All in all though it was a great trip and we had so much fun. Makily FINALLY has a bit of color to her skin. We slathered her with sunscreen at least 3 or 4 times a day but she is a shade darker than when she went!

Here's a video of our weekend ENJOY!

Make an on-line slideshow at www.OneTrueMedia.com

We're off.....

.......................to Disney!

We had planned on spending the weekend at the beach but decided to take the kids to the Disney parks instead. We have passes and we need to get our money's worth! I think we are going to Blizzard Beach or Typhoon Lagoon on Sunday......pray I don't get harpooned by someone thinking I am a beached whale!

All kinds of drama with J's case in the last week or so. Not sure how much I will be able to blog about but just know that things are still looking good for US.

I have more to blog about but it's late here and I need to go to bed so we can get up early and head down to Orlando.

Be back Monday sometime.

Have a great weekend!

Makily's Music.

We noticed when Makily was very little that she loves music. I am told that most Emanuel Syndrome children do.

Certain songs or music make her light up more than others. Her favorite "kid" song is "My Bonny" (although I insert Makily). Whenever the song starts she shakes her head, kicks her feet and grins. She does seem to like top 40/dance/pop music. Allen listens to a lot of alternative stuff and she really likes that.

So here's a video of Makily and Daddy singing and listening to music. This is all from over the weekend. Please excuse the mess that is her hair in a few of the clips. She had just gotten out of the tub and we hadn't brushed it out yet. It's looking pretty crazy!

Make video montages at www.OneTrueMedia.com

Feeding Makily.

So originally we had planned on sending Makily to summer school. She would get her PT,OT and speech while there. It was Mon & Tues from 8-1. Well the first several weeks things were crazy here, either I was sick, Makily was acting sick or something was happening.

Finally Allen just said let's do private therapy for the summer and give her the summer out of school.

So we went back to see Mrs. Elon last week. I just love her. Makily does too.

Which leads me to this decision that Allen and I had made a while back but that I have not really talked much about.

We had stopped orally feeding Makily at all.

It wasn't like she was taking large amounts by mouth. In fact it was minimal and ALWAYS a fight. I can probably count how many times in four years we had a feeding session where Makily was not screaming and fighting me through at least half of it. Makily's ability to eat by mouth (or lack thereof) has been a HUGE source of stress and sadness for me.

There are so many reasons why she does NOT want anything to do with food. The cards were stacked against her from the get go.

Here's a little history on Makily's struggle with eating.

Birth: Cleft palate with Pierre Robin Sequence, Severe hypotonia, delayed swallow with severe suck, swallow, breathe dis coordination.
(all that in a nutshell means she had a hole in the roof of her mouth, her jaw was pushed WAY far back and her tongue was balled up in the back of her throat obstructing her airway at times. She has low muscle tone and that INCLUDES the muscles that help coordinate eating and so her coordination was a mess)

Six weeks: Diagnosed with SEVERE GERD AND *trace aspiration with oral feeding.
(*to this day I do not think she truly had aspiration during that swallow study as THREE professionals reviewed the tape arguing (in front of me) over whether or not she actual aspirated...two said they didn't see it, the speech therapist SWORE she did over and over so the other two relented and said "well if she did it's just a trace amount) I was advised to STOP all oral feeds until we could get the reflux under control as Makily was at high risk for aspiration pneumonia from not only the *possible oral aspiration but the reflux too. She had lung damage from the meconium aspiration at birth and I as told pneumonia would likely land us back in the hospital...we had only been out of the NICU two weeks at this point. We were given medication to try and control the reflux to no avail.

Three months: Nissen fundoplication done to stop Severe reflux, pyloroplasty to help her stomach empty and G tube revision.

Four Months: Makily had intermittent dumping and retching syndrome

Six Months: G tube started leaking. Spent a month at Shands where she almost died (click here to read about that nightmare). G tube eventually removed after a total of six weeks leaking and an NJ tube was placed (which caused MAJOR issues with putting ANYTHING in Makily's mouth as she ALWAYS had that tube in the back of her throat) at APH Childrens.

Nine Months: Had speech eval, we were NOT cleared to orally feed yet by her doctors and were in the process of transferring EVERYTHING to APH Childrens. (I was sneaking some baby foods in though)

Ten Months: NJ tube removed, G tube replaced.

Eleven Months: FINALLY cleared to oral feed again *with caution*

One Year: We saw the craniofacial team and were PRAYING they would repair her cleft ASAP. It was causing major issues with eating because everything that went in her mouth came out her nose. This made Makily VERY mad. Due to all of Makily's airway issues, intubation problems and the fact that she has problems with anesthesia (going down and coming out of it), they insisted on NOT fixing her cleft until she was 15 months old....then they put it off until she was 18 months.

Makily's first year and a half was spent on and off in the hospital, having surgeries, pneumonia, breathing problems, retching and in pain. During that time orally eating was not a priority and was dangerous.

All that being said.....I logically know that with all those problems, even with a "typical" G tube child you will have oral aversions and feeding issues....so add in a severe genetic condition and things get really hard.

Even still I feel like I have failed Makily miserably and it makes me cry.........a lot.

Last December at the Christmas parade we had bought some boiled peanuts. I smushed one up and fed it to Makily. She loved it. Smiled and everything....I was even more proud when she swallowed it. Ten minutes later she started coughing and tiny smushed up pieces of peanut came out.

She didn't swallow it, it had just been sitting in the back of her throat the whole time.

That was a pivotal moment for me.

I decided I was not going to force her to do something her little body just can't seem to do. I stopped doing it. I stopped putting pressure on myself about it.

I gave up.

The guilt and relief of that is tremendous.

I do feel a terrible sense of failure. I remember when Makily got her G tube I swore that we wouldnt need it more than a month or so. Here it is four years later.....she still has it and deep down in my heart.....I know it's a permanent part of Makily.

So after talking with Elon last week she asked me what I would like to get out of therapy with Makily. Obviously communication is one thing and then I said this and after I said it, I lost it.

"I just want her to swallow".

Something so simple.

I just want my daughter who I love more than I love myself to learn how to swallow. It hit me like a ton of bricks when I thought about what a SIMPLE thing that is. I am not asking for the moon God. I just want my baby to eat.

Is it too much to ask? Is it?

So I am setting back out on the "feeding Makily" journey yet again.

I am going to try and not pressure myself or Makily about it. If she freaks out too much or gets too angry then I will stop until next time. I don't think she will ever be rid of the G tube but I would love for Makily to be able to enjoy something simple like a Popsicle or ice cream. She can't control her saliva and that is something I would love for her to be able to do...or at least do better than she does now.

So here is a little video of today's session with Elon. We focused on communication and play a lot today and Makily did a REAL FIRST!

She VERY purposefully waved bye bye when Elon asked her too. I couldn't believe that she did it AND that I was actually taping when she did!

Check it out:

Make an on-line slide show at www.OneTrueMedia.com

"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.

Fun on the Fourth

We had a fun filled Fourth.

We started the day off at Carney Island. The whole family went, my mom, dad, sister, brother in law, niece and nephew. The kids had a great time playing on the swings. We cooked out.

Makily LOVES to swing



Deborah and Delaney swinging


Me and Delaney Swinging.



Makily and J fell asleep. My Dad had brought his boat so Allen sat with the kids while my Dad took me out on the boat. We bought this tube to pull behind it:



I had NEVER done this before and let's say I have the war wounds to show for it. My arms are so sore from holding on for dear life! I sat in the middle of the tube. There was no way I was sitting on the side and holding on like in the picture. I mean let's face it I can barely walk and chew gum at the same time.

At first I lost total control of the tube and went flying. Allen told me he saw the tube go up about three feet up in the air at one point and he was just waiting for me to fly out of it. I had a death grip on that thing! My face slammed into it a few times. I have a bruise under my chin and I may have broke my nose, my arm looks like I have been beaten.....




......................but DAMN THAT WAS FUN!


LOLOL

Once I was done Allen took a turn while I sat with the sleeping babies.

We ended the day at the pool at Allen's mom's house. The kids are really water babies. Makily usually plays for a while and then the soothing water makes her sleepy and she is out. J kicks his feet and has a big ole time. We got him a life jacket. He loves that because we can just hold on to it and he free floats.



We had planned on doing fire works here at the house (just the "cheap ones") last night but the kids were tired and so were Mommy and Daddy. I went to bed at 8:30!

Hope you all had a great fourth.

We are going to try and do fireworks tonight to make up for last night!
More pics to come tomorrow.

On a walk to the store with Daddy

Holding On.

Every time I feed J he plays with the necklace I wear. More so when he is sleepy. Yesterday after court we went to the mall to take our minds off things. Allen and J went to go to the "video store". When they met back up with Makily, Tara (my niece) and I, J was holding a small box in his hand. With Allen's help J bought me this simple gold cross. Now when I am feeding him he plays with the cross as he slowly drifts to sleep.



I will never take it off and it will always have a special meaning to me.

Here are a few pictures from the last couple of days.

Little J trying to steal Uncle John's hat.


Makily playing patty cake with Tara


Makily snuggling with Uncle John


Giggling with Uncle John


J in the stroller at the mall


This is a video I took in the van yesterday.
J LOVES Peek-A-Boo now and Tara had him laughing so hard.

Make video montages at www.OneTrueMedia.com

As for me I am "holding on". I go back and forth on how I feel about everything and I just want to have peace about it. I can't have peace if I don't give it to God and LEAVE IT THERE.

I am trying.

My friend Heather posted this "poem" for me and it rings very true in my situation and MANY situations in my life.

I may add it to my sidebar of my blog.

As children bring their broken toys,
with tears for us to mend,
I brought my broken dreams to God,
because He is my friend.
But then instead of leaving Him
in peace to work alone,
I hung around and tried to help,
with ways that were my own.
At last, I snatched them back again
and cried, "How can you be so slow?"
"My child" He said, "What could I do?
You never did let go."

--Author Unknown

I keep reminding myself that we have been through so much with Makily. We can get through this. I am stronger than I give myself credit for. I just really have to surrender this and let whatever is going to happen....happen. I had a horrible time in the beginning with Makily doing that and I struggle with it now with J.

Please pray for peace in all of this for Allen and I.

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.

Shopping Spree, Sleepless Nights and Attachments.

Saturday we received an unexpected $200 check in the mail for J from our agency. The letter attached said it was J's clothing allowance. I had just told Allen I was going to have to buy J a new wardrobe again because he was outgrowing some of his stuff, great timing huh? I was also pleasantly surprised because I had been under the impression that the clothing allowance was really just $50 and honestly I was not going to even bother trying to collect it.

My friend Sarah is a foster mommy too so we went shopping for the babies together. We had so much fun and got A TON of clothes. We stopped at GAP in the mall and they were having a great sale. I got at least five outfits from there.



JC Penney's had a great sale going on too so we really made out. I still have money left over for more clothes for J and I plan on going shopping later this afternoon for him again.



He needs more socks. I just don't understand where the heck his socks go. It's like they sock gnome comes and steals them. Of course I had to buy some things for Makily (out of our own money I would never use J's money for anything but J of course). I tried to get them a couple of outfits that would match for pictures. I also got a HUGE bag FULL of clothes from my friend Chontee. I haven't been able to go through them yet but I am sure J will be well dressed for quite a while!
(*thanks again Chontee*)

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J is NOT sleeping well. This started Sunday and I am not sure what is going on. My guess is it's a growth spurt. I know Allen's schedule has something to do with it too. He has really grown fond of Allen and it's so cute. Saturday Allen was putting his shoes on to go to the grocery store and J started SCREAMING and crying. He stopped as soon as Allen picked him up to take him with him. It warmed my heart :-) Last night he was up every hour and would eat at least 3-4 ounces each time and then fall back asleep. It MUST be a growth spurt right?

I also have not been sleeping well the last week or so. I have a hard time falling asleep. Court is tomorrow and I just can't stop thinking about it. My stomach is in knots. My friend Sarah has court on her foster baby girl too so we are going together. Allen will be home and is staying with the babies. He said he just doesn't think he can handle going. I know it's going to be hard for me too BUT I am too nosy NOT to go. I want to hear every word, see every expression and know every detail.

***********************************************************

It's safe to say that J has attached to us. He does not like being alone in a room for any period of time. It's gotten worse over the last couple of weeks. I have been reading up on attachment issues with foster babies and children. I was reading what the risk factors were and was sad to see that J has MANY of the risk factors of developing RAD (reactive attachment disorder). Read up on it. It's pretty sad. At this point he is not showing any signs of RAD but I am afraid if he is moved again, especially if it's more than a few months from now, he will have major issues with it.

When I give Makily a bath he really gets upset because he's in the play pen and we are in the bathroom. I have resorted to doing this to avoid the tantrum.

Enjoy!

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Sweet Cheeks.

Last night Makily woke up from her nap with ROSY RED cheeks. Typically this means she has a fever. I checked and she was fine. She was in a GREAT mood. Auntie Liz teased her and she was giggling like crazy.

This makes me smile.









************************************************************

Dinner with my sister, brother in law, niece and nephew the other night.

I said "Delaney SMILE", this is what she did?


Then I said "Ugh no, try not looking like Popeye"...she wasn't amused.

Finally got a good one


Micah cheesin', he was in a great mood, he had just gone and seen "The Hulk" with Daddy.


Delaney wanted ALL the yeast rolls.


So that's the last couple of days here for us.

Not much more to say tonight except thanks for all the supportive comments I have been receiving lately. It really helps me in ways I can't describe. Next week is going to be better, I just know it.

I'll leave you with this. It's hard to make out, but it's a picture of my hair....with butter squished into it. Courtesy of Little J.

Reality Bites.

So I had mentioned a few entries back that the GAL would be meeting with J's bio's at visitation on Thursday. The plan was for her to explain to them that we would be willing to adopt J if they are not going to get him back.

Transport picked J up and then promptly brought him back less than 45 minutes later. I had laid down for a nap and honest to God thought I was dreaming that the door bell was ringing!

His parents cancelled 15 minutes before they were to be at visitation. They gave an incredibly LAME excuse that irritated me more than anything else. I won't share it here because again, that whole anonymity thing.

Initially I was happy for me....then as the transporter was handing J back to me, my heart sunk for him. I immediately wondered if when he is older if he will want to know why his parents didn't try harder to get him back.

I called the GAL and let her know so she didn't waste a trip. Obviously she didn't have "the talk" with them.

I am not sure if it is because of the fact that court is just days away or what but I have this impending feeling of dread. Part of me wanted to make sure that the bio's know we are willing to keep J before court. The GAL came for a visit today and she still is planning on speaking with them but who knows when she will actually be able to connect with them.

I have known from the get go that it's very possible J could be taken from us. I try not to dwell on it because I can't change it. I can only do what I am doing right now, today. This hearing coming up is forcing me to think about it and I don't like it. I know they won't be moving him anytime soon as the ICPC on the family member has to be completed but I am still on edge about it all.

**************************************************************

The other night I was sitting on the floor with Makily laying across my lap. I have held her that way more times than I can count. She was peacefully sleeping and looking like the angel she is. It was time to put her in bed and as I began to get up I realized, I can't do it anymore. This brings tears to my eyes just typing those words. My baby has become to heavy for me to get myself and her up off the floor at once. I tried and tried and then gave up for fear that I would drop her or hurt myself. I scooted over to the couch and laid her down. Then I sat and cried.

Last night Makily, J and I went shopping with Deborah and Delaney. We had to make a stop in the "family bathroom" for an all around diaper changing session. It was so hard changing Makily. I was sweating by the time I was done and she was whined the whole time. The bigger and older she gets the more I can't ignore the fact that my angel baby girl is profoundly disabled. Usually I can go about my daily life and not think about it but when things like this happen, I am forced to and I don't like it.

She is growing up and I can't do a thing to stop it.

***************************************************************

REALITY BITES.

**Am I am HUGE ray of SUNSHINE lately or what?**

I apologize for the glum nature of my posts lately. I have been telling myself I need to post another "Walmart Adventure" story or something light but I just haven't felt like it. This is my real life and sometimes it aint daisies and roses I guess.

God Gave Us You.

Every parent MUST have this book.

If you don't have it, GET IT.

Someone had bought it for us after Makily was born. To be honest it was almost a year before I even was able to think about books and reading to her. I hate it that Makily's first year was so stressful. I wish I could go back and not have been so crazy depressed.

ANYWAY....

I remember the first time read this book. I was laying in bed with Makily and just happened to pick that book to read for bedtime. As I read along it choked me up and to this day I still can't get through it without crying.

This part especially gets to me EVERY TIME for obvious reasons.

"Every night, I prayed for you, my special child, I prayed that your bones would be straight and your heart would be strong. But most of all, I prayed that someday you would love God"

I DID in fact pray all those things for Makily while I was carrying her. I remember driving to work rubbing my belly and telling her how much I loved her. I would say "Makily you have to grow big and strong so when you come out we can do all kinds of fun things".

Ironic huh?

While God didn't give Makily a strong heart, she was born loving him. He hand picked her to do a special job on this earth. I am so blessed she is mine.

I read this book to Makily every night these days.

She pats the book and squeals like crazy the whole time.

I like to believe she knows exactly what I am saying and that is why she gets so excited.

No one will convince me any different.

Anyone know of any good adoption or foster child books?

J needs one.

Update on how I am feeling.

I *think* I am on the road to recovery thank God!

I have actually been able to eat without puking or feel like I have to puke.

The dizziness has gotten better, the headaches are gone.

The shortness of breath is better. I am still getting winded easily but not as bad as it was.

I have all these appointments being scheduled for a pulmonologist, cardiologist etc but I don't even know if I should go now. It does not help that the doctor I am seeing has drug her feet on everything even when I called them crying saying "HELP I FEEL LIKE DEATH".

You would think that when the doctor mentions something like endocarditis to a 30 year old patient that she would be having things done that day or the next day but she really put me on the back burner and I don't like that. I have lost my faith in the majority of doctors at this point in my life.

It's sad really.

*sigh*

So who really knows what was going on with me. My guess is that it was mono/Epstein Barr coupled with a kidney infection. I noticed that the more I took the antibiotics for the kidney infection the better I was feeling.

Writing a Will.

**Disclaimer**:
This is a depressing post that may have some statements that could offend others. Please read with caution and as much understanding as you possibly can muster. Realize that this was written by a mother who loves her child more than she loves her self and that fears for her future every waking moment of her life.

So Allen and I have said to each other many, many times that we need to right a will.

We do.

Why have we avoided it like the plague you ask?

Well because when you are the parent of a special needs child, writing a will is enough to send you into total panic mode.

We talked about it in length last night while we were laying in bed.

Of course the biggest subject is what would happen to Makily.

The thought of her on this earth without Allen or I nauseates me.

Don't get me wrong, we have a ton of friends and family that love Makily dearly and that I would trust her with. In the end though NO ONE will do things like I do them or be able to connect with MY Makily like Allen and I do.

Is this about control?

To an extent for me it is.

Let's face it, I can't STAND to watch Allen do Makily's hair (when in reality I should thank my lucky stars I have a husband that WILL DO Makily's hair). It's not that he does it wrong, it's just not how I do it. Same with the way he gives her meds, sets up her bath etc etc. It's NOT wrong by any stretch of the imagination but it's not my way so it irks me. I have come a long way in the past four years though. I have learned to keep my big mouth shut and let him do it.

Even some paid professionals have made catastrophic mistakes with Makily. How on earth could I trust that she would be watched over like a Hawk when I am gone? I watched one nurse fumbling all over the place once trying to give Makily medication into her "balloon port" on her G tube. I quickly pointed out that was the wrong port. If you have been reading my blog for any length of time you will know all the lovely mistakes made at Shands Childrens Hospital too.

SCARY!

Of all the things in my life that torture me, the thought of my girl sitting alone somewhere in a "home" is the worst. What if she is just left to sit in a chair and stare at a wall all day? What if they don't feed her right or keep her clean?

Most of all what if she is not loved and what if she is lonely and sad.

The what if's go on until I am a hysterical, crying mess.

Like I said before we have family and MANY friends that love and adore Makily. I have to be brutally honest with myself though. Asking someone to take care of her after Allen and I are gone is a HUGE, life long responsibility that will NOT get easier. It will be forever.

I vividly recall the feeling I felt when I as her own mother realized the "foreverness" of caring for Makily.

I would be lying if I said it didn't scare the crap out of me and depress me down to my toe nails.

Let's face it wiping the butt of a 20 year old is not something one looks forward to.....

.......but it's my reality.

The reality that most people never have to or want to think about. It's easier to live in their cookie cutter, normal lives with blinders on (and yes that is me being very bitter that I had my blinders taken away four years ago).

It's the reality that I would be asking someone else to willingly take on.

That's a TERRIBLY hard thing to ask.....even if it's your own family member.

So when Allen and I discussed this I couldnt help but think of this story:

CLICK ME TO READ THE STORY

I can imagine the desperation that must have been going through this man's mind when he did what he did. Was it the right thing to do? Probably not, but I understand why he did it, and my heart breaks for his family.

This story also came to mind:

CLICK HERE TO READ THIS STORY

I actually saw a documentary on that story on MSNBC. They interviewed the mother and I sobbed while listening to her life's story. Her husband had Huntington's and she cared for him until she physically could not anymore. He died a horribly long, painful, slow death. Can you imagine as a mother KNOWING your two sons would meet the same fate? Can you imagine your sons BEGGING you to not make them live that way, that when they became that sick to please help them end it?

The weight of that must have been unbearable.

She looked much older than her years and like the saddest person on the earth.

I am not saying that suicide or assisted suicide is the answer to this type of problem AT ALL. I just want to show how lonely and scary it can be for a parent of a special needs child. I want to show people the side of parenting most people never see.

The quiet reality that many parents face and never talk about.

Allen and I are still undecided of what to put in our will about Makily. As awful as this may sound I actually told Allen that I don't think I could rest in peace knowing Makily was left on this earth without us. There is a part of me that prays the Lord takes her before Allen and I. While it would likely kill me, I would know that she was okay once I was gone. That she would only know love, never be lonely or sad and that she was always taken care of and never abused.

God will somehow send us the answer. We just have to wait and pray.

Life is hard.

Doctors, Doctors, Doctors.

Today my Nanny had a mastectomy.

She was diagnosed with breast cancer a little over two weeks ago. I have not spoken about this on my blog for personal reasons.

She is doing very well and was even sitting up this after noon. She is expected to go home in the morning as long as everything continues to go well.

Please pray for her recovery in the coming weeks.





I went back to the doctor today. My pulse is still high, I am still feeling VERY out of breath and fatigued at just doing simple things. I am breaking out in sweats and it's not getting much better. I took a shower today and was so tired afterwards I thought I would pass out. It's starting to really get on my nerves.

My blood work was good except for a few things. My potassium was low so they are going to supplement me with that.

My liver enzyme's were elevated (not sure why).

I tested positive for the IgG and IgM Epstein Barr Virus. Strangely enough though I was negative on the mono test so that is leaving us all scratching our heads...including my doctor. I have read a little and from what I see having elevated liver enzymes and testing positive for the IgG and IgM means that you either HAVE or VERY recently had Mono. I am no doctor though.

Since my doctor does not really know what is going on she has set up a ton more blood work, an abdominal u/s, an echocardiogram and a chest x-ray. None of which scares me at this point I just want to know what the heck is wrong with me so I can feel better. I can't stand to be cooped up like this, it's driving me crazy.

This will be gross.

Ya know what sucks?

Choosing what to eat by how horrible it will taste coming back up.

Advice to all:

Lemon-Lime Gatorade is VERY unpleasant coming back up. That mixed with two partially dissolved pills is enough to make for a never ending puke session. Believe me...I know.

Salsa is HORRIBLE!
(that was at the start of this funk when I didn't realize I was going to be puking often)

Dr. Pepper isn't so bad.
In fact if I had to pick something to puke, I'd pick that.

I have not heard back from the doctor so I assume that I don't have some horrible disease that will land me in the hospital.

*knock on wood*

My headaches haven't been near as bad today and I was able to half way clean up the living room before I got out of breath. I still feel winded all the time....like I just got done running but I haven't done anything.

Makily and I are watching "America's Got Talent" and she so loved the 80 year old lady with the curly hair tap dancing.

Can you tell I am delirious!?

**Does that Ziggy cartoon at the top TOTALLY represent my entire life or what!?**

Been feeling crummy.....

I had missed two days of my meds (Effexor) and then got a nasty stomach bug. I kept chalking up how bad I felt to the fact that I had missed my meds. The withdrawl from Effexor is HORRID, google it and you will be shocked (something I knew nothing about before I started taking it of course).

It didn't make much sense though because it's been more than two weeks since I missed a dose.

I FINALLY went to the doctor today after calling my mother crying saying "ack what to do".

Yes at 30 I still need my mommy to say "go to the doctor you fool!"

She came over, stayed with the kids and I went to the doctor.

She does NOT think the way I feel has ANYTHING to do with my Effexor.....been to long since I missed a dose.

I am dizzy, TIRED, nauseaus, short of breath, my heart is pounding, I am breaking out in sweats and I have a massive headache that won't quit.

My resting heart rate was 120ish (high), my blood pressure was high, EKG was slightly abnormal, and my pee was dark and "icky" for which I was given Cipro (once again I have crossed the line in sharing the color of my pee with my blog readers, forgive me). I have no "pee pain" or kidney pain so go figure.

She ordered a ton of blood work and says that all my symptoms point to endocarditis. She said the blood work would be back tomorrow and she could tell me more. She also checked me for Epstein Barr and Mono (I thought that was one in the same though?).

So that's where I have been. Hopefully it's something simple that will clear up quickly and easily. I am praying it is NOT endocarditis because that requires IV antibiotics and well I just don't have time for all that.

In the wise words of Garth Brooks:

I am much to young to feel this damn old.



Hopefully I will be back to my regularly blogging schedule very soon.

"She would have really enjoyed this".

My God-Daughter/Niece Cameron (Trishtwo and Justin's oldest, she's four) had her first recital last night.

I was so excited to go. I love that sort of thing, always have. I knew there may be a few moments that may tug at my heart....but the one that really got me was one I didn't even think of.

Cameron came out dressed like a Princess in her pink costume. It was so adorable, I really just wanted to eat her up.



They did a little dance to a song called "Lullaby" and it was incredibly sweet. I was proud at how well I was holding it together, I mean I was a little choked up but not for the reasons I thought I would be. Seeing Trishtwo GLOW with tears in her eyes watching Cameron dance was so touching. Makily was peacefully sleeping on my lap......I did wish she could have been up there with Cameron but I was handling it well.




They finished their dance and Trishtwo and I wiped our faces and said "OMG that was so sweet".

It was a total girl moment.

Makily woke up from the applause and I sat her up on my lap.

The next dance started it was ballet also. The girls were a little older.

Makily LOVED IT.

She was kicking her feet, smiling, giggling and squeaking her shoes like a mad woman. I thought maybe it was just the song she liked and that the dancing wasn't really what had her so excited.



She continued to intently watch the dancers on stage. She wanted to make sure everyone knew how much fun she was having.....she would smack Trishtwo to get her to look at her and then grin like a maniac.

When the third act started and Makily continued with her squealing, grinning and laughing I realized it wasn't just the music, she was REALLY enjoying the dancing.

I felt that familiar feeling in my heart.

The feeling of a four year old wound, that will never heal, breaking open again.

I buried my face in Makily's hair and tried to hide the fact that I was bawling.

I quickly realized that there wasn't much hiding it.

I looked over at Trishtwo and in a choked voice said:

"Ya know, she would have really enjoyed this".

Trishtwo threw her arm around Makily and I and she cried with me.

The more excited Makily got the harder I cried. I finally got it together by the fourth (okay fifth) dance and was able to really enjoy the rest.

Near the end I noticed Allen watching Makily, then I saw his face drop in the same way mine had earlier. I knew immediately he was thinking the same thing and it broke my heart.

I never even thought about Makily watching the dancers in delight. I never thought she would have cared one way or the other. Seeing her so BLATANTLY loving it broke my heart for her.

What I wouldn't do to see my sweet girl in a pink tutu on stage.

*sigh*

GOD, THIS IS SO HARD.


Luckily the second half of the recital was tear free. Makily did have to include her input one way or the other. There was a group of older girls that did a "modern dance" that freaked me out a little. It was a little too "tribal/voodoo" for my taste. The last 30 seconds or so of the dance was supposed to be very dramatic. It was one lone dancer on the stage, the back ground was BLOOD RED and the music had ended, it was DEAD silent. This girl is dancing (to no music) very intensely when all the sudden Makily kicks her feet together and squeaks her squeaky shoes.

It was SO LOUD it was all I could do not to bust out laughing.

I love it.


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I cut Makily's hair for the first time Friday. It's needed it for a long time but she hates anyone messing with her hair I didn't have the guts to take her to have it done. I just cut off an inch or two and it's much easier to manage and not as tangly. I would have tried a smidge more but she kept shaking her head no and I was afraid I may ruin it if I pushed it much more.

I saved it.



Makes me feel special that I was the first person to ever cut her hair.

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Little J is doing well. Rolling over, eating baby foods, it's all good! Still lots of uncertainty where he is concerned but there isn't much we can do about that right now. It's definitely a wait and see game, God is REALLY trying to teach me patience. I am finally getting it I guess but wow it's so hard.

Makily and J sitting together....their feet are so close in size it's weird. Tiny feet is really common in ES kids.
Makily is on the right, J is on the left.


Here's a video of Makily at the recital. Sorry the quality isn't that great. It was dark in the theatre and so this is the best we could get. She was happy and "dancing" along through the whole thing.

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This video is of Makily and J together. He really likes her and is always trying to get to her. Makily let's him play with her bibs and her toys.

Make video montages at www.OneTrueMedia.com

Standing Outside The Fire.

I have ALWAYS loved this song.

I remember as a teenager watching this video and it made me cry (big surprise right?).

When Makily was born it meant even more to me for obvious reasons.

Makily taught me that the things in our lives that are the hardest and most painful are almost always the things that eventually bring us the most joy and teach us the most important lessons (even though when the "fire is at it's hottest" I may not always see it that way).

Today I had a meeting that has shaken my confidence in whether or not we will be able to eventually adopt little J. All hope is certainly NOT lost by any means but there is yet another obstacle that may possibly get in our way.

I cried about it for a while.

I had some pretty nasty internal dialogue with myself.

It went a little like this (I have edited it for graphic language):

"What the heck were you thinking? You knew going into this how uncertain it was. You knew it was very possible you would bond with a child and have them ripped from you. You knew it would hurt. Why are you so stupid to have put yourself and your family in this mess? What are you going to do if you loose him?"

This berating of myself went on for a while.

Then when I realized that even if they take J from us, I wouldn't take it back.

I would throw myself right back into the fire for him.

Just like I wouldn't take Makily back.

She is worth every tear, every ounce of depression I suffered, every angry moment that I asked God where he was and every second that I sat in the hospital with her wondering how long she would live.

Both of MY children are worth every second of pain I have suffered to have them in my life.

I will gladly jump back into the fire to keep BOTH of my babies with my as long as I possibly can.

I love you J and sweet Makily.


Standing Outside the Fire:

We call them cool
Those hearts that have no scars to show
The ones that never do let go
And risk it the tables being turned

We call them fools
Who have to dance within the flame
Who chance the sorrow and the shame
That always come with getting burned

But you got to be tough when consumed by desire
'Cause it's not enough just to stand outside the fire
We call them strong
Those who can face this world alone
Who seem to get by on their own
Those who will never take the fall

We call them weak
Who are unable to resist
The slightest chance love might exist

And for that forsake it all

They're so hell bent on giving, walking a wire
Convinced it's not living if you stand outside the fire

Chorus:
Standing outside the fire
Standing outside the fire
Life is not tried it is merely survived
If you're standing outside the fire

There's this love that is burning
Deep in my soul
Constantly yearning to get out of control
Wanting to fly higher and higher
I can't abide standing outside the fire

Repeat Chorus(twice)

I feel like a rung out washrag.

Friday I felt weird all day. Just out of sorts. Sleepy, groggy, nauseated etc.

I spent most of Friday night into early Saturday morning hugging the toilet.

Oh joy.

Since then I have felt so lethargic, walking across the house leaves me out of breath. ICK. I keep breaking out in sweats, if I didn't know better I would think I was going through menopause at 30.

Hoping tomorrow is a better day.

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Thursday J had visitation again. I sent a note with him. I really got a wild hair and sent four pictures of him. I had only intended on sending one but Allen and I couldnt choose which was the best. His bio sent back a very gracious reply. Truth be told I was excited to read it and then AFTER I read it I wished I hadn't.

*sigh*

I go from desperately wanting to loathe J's bio's to actually feeling sorry for them. Don't get me wrong, in my mind there is NO EXCUSE for what happened that put them in the position they are in. This is not their first "day at the rodeo" so to speak.


It is no one's fault but their own and they both should have known better.


On the other hand reading a letter saying things like "thank you so much for taking such good care of J, he is cleaner and happier since being moved to your home and we are so grateful" tends to make them more human and not just a "situation".

Does that make any sense?

I don't know it's just all very confusing and conflicting.

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Delaney is going in for a bone marrow biopsy on Tuesday. We are all on edge about that and I am sure no one wants it to be over with more than my sister and my brother in law. Please pray that the test results come back fine and that little Delaney does not need any further blood draws or needle pokes.

******************************************************

I spoke with both the home health company and the insurance company about Makily's bed. They will NOT cover the sleep safe but they will cover a "fully electric home health bed". I looked up online this is the bed they approved.

Here it is:



When I saw it the first thing I said was "there is nothing on that bed to keep Makily in it!!" She said "oh well the rails would come with it and then directed me to the "safest" rails for Makily.
Here is a picture.

They picked those for Makily because they go the length of the bed, all the others are either half rails or less than that. These rails ARE NOT going to cut it and if they would have carefully read my letter they would have realized that. Makily will get wedged in between the bed and railing in NO TIME I can see it already. She is so wiggly at night I KNOW her tubes/wires/cords are going to get tangled and caught in that railing. For Heaven's sake she just fell out of the bed because SHE GOT WEDGED IN BETWEEN THE TODDLER RAIL AND MATTRESS AND BROKE THE TODDLER RAIL! Everytime she has been in the hospital in one of their beds I wake up to find her sideways in the bed with her arm/leg stuck between the bars/rails.

SO NOT SAFE!


Which is why we picked this bed.



See no rails, nothing for her cords and wires to get tangled into, no way for her to wedge herself in between anything.

At this point I have to write a letter of appeal and I will include pictures of Makily all tangled up in her wiring/tubing. Hopefully I will be able to catch her wedged in her bed....isn't that horrible that I hope to catch that? I should have taken a picture the last time but I was so mortified I didn't.

Right now she is sleeping in a toddler bed and I am sleeping in her big bed when Daddy is out of town for work. J sleeps in his room in his crib. We figured if Makily falls out of the toddler bed at least she is only falling a foot rather than falling from the height of a twin bed. She has already found ways to wiggle down past the rail on that and I went in last night finding her halfway in and halfway out of the bed...


...................................WHY DID NT I TAKE A PICTURE? ACK DANG IT!