WARNING: THIS POST CONTAINS GRAPHIC PHOTOS.

VIEWER DISCRETION IS ADVISED.




**Seriously this entire post is gross so if you are easily offended OR have a weak stomach....skip it*****











Okay you have all been given fair warning.


I was in a mad rush to get ready to be at my doctors appt by 11:00. I am always in a mad rush to get ready.

Story of my life.

ANYWAY

J was taking an early nap (because I knew if he didn't I would pay for it at the doctors office). I had just enough time to get ready and be to my appt on time.

I got out of the shower and heard J talking in his room. I decided I would go get him up real quick and then blow dry my hair.

Well when I opened his bedroom door.....this is the horror I found.

(cue psycho music....reet, reet, reet, reet)



Have look INSIDE his crib:


Gotta love baby turd hand prints:


J was covered in poop from his head to his toes.

He even had crap plastered BETWEEN his eyes.

SERIOUSLY.

I had no time to take his picture. I quickly picked him up (while holding him away from my body....think Three Men and a Baby), and went straight to the bathroom. I left the drain open and just ran the water. He thought this was a wonderful game and squealed in delight. I blew dry my hair while he soaked the turds off of his body.

sigh

I have been saying for the longest time that I wanted to do a mural and a theme in his room. I ha vent for fear they will take him and then it won't be his room anymore.

I guess J was tired of waiting for his mural.

He made his own.

Out of turds.

I will say that I am rather impressed.....to me it looks like a bat....maybe even a bald eagle? How Patriotic of him?



Look at the wing span on that!

Just when I thought I had all the solid turds cleaned up...I pulled the crib out from the wall to clean it and found this....Oh Joy I thought...another prize!

I like to call this picture

Sticky Wall Turd


Needless to say I spent an hour bleaching the walls, his crib, the sheets and cleaning up turds. I shampooed the carpets too.

I will be saving these photos to use as black mail when little J is older and he brings a girlfriend over. I may have been the turd cleaner today but revenge is sweet!

Here's the after. Hopefully it will stay this way....if I wake up to another turd mural in the morning.....I may cry.







Trish honey, YOU TOTALLY called this last week didnt you!?

I HATE APRIA MORE TODAY THAN I DID YESTERDAY.

Dear Apria,

This afternoon after a long day of appointments and running around with my kids, I was relieved to see a small box from your company on my doorstep. I was thankful that FINALLY after ALL YOU PUT ME THROUGH in the last couple of weeks, I had the extension tubes I so DESPERATELY needed in order to FEED MY CHILD!!! I was almost joyful about it.

Well my relief and joy was short lived.

I opened the package and quickly realized something very ANNOYING.

I could feel my blood pressure go through the roof.

You sent the WRONG EXTENSIONS.

YOU SENT THE WRONG EXTENSIONS...YES THE WRONG ONES.

THESE DO NOT FIT YOU SORRY EXCUSE FOR A HUMAN BEING.

What really BURNS me up is that you sent the VERY extensions that I told you SEVERAL times WERE NOT THE CORRECT ONES.

Please know that I will be calling your office in the morning...and I feel incredibly sorry for the poor chump that gets my call.

Sincerely


Trish
Psycho Mommy on a Mission for AMT feeding pump extensions.

p.s. I hate you all.

I had a couple of questions from readers I figured I would answer here:

1. Maklily's AMT button is an 18fr 1.7 cm.



2. IT IS NOT one of the AMT models that we can use Mic-Key extensions with. I was hopeful it was, but alas it is not. I have tried....believe me. The part that hooks into her button is too fat and seems shorter.

3. I had not heard of the AMT clamp but I am on a mission to find one and get one!

4. The exact name of her button as written on the box is: AMT Mini Balloon Button.

What I ended up doing is yanking off the med port/feed port peice off one of the new extensions (which I wasnt sure you could do...but now know I can). Then I yanked off the med port/feed port off the old extension. That really was the part that was making the tubing slide out because it's been used to much it's stretched out. I put the new piece on the old tube and it's working for now.

I am the Queen of "Make it Work".

I feel like Tim Gunn (I so love him by the way).



It's sad I have to rig my kid's feeding tube with parts and pieces to feed her.

Such is life.

I HATE APRIA!!

I HATE THEM!

HATE THEM!

Makily's got this new AMT button. When we got it, it came with ONE bolus extension (for feeding quickly with a syringe...which Makily can't tolerate) and ONE pump feeding extension.

I was due to order her monthly supplies in a week or two and figured I would order more extensions then.

Well in TRUE MAKILY FASHION the ONE extension we had POPPED A FREAKING HOLE. NEVER has this EVER happened to us. Holes in the balloon on her button yes BUT NEVER on/in the extension tubing. In all honestly I was just glad the button didn't go bad!

So I call Apria in a total panic telling them that Makily can't eat without this extension and I need one overnighted to me. I was desperately trying to think of ways I could feed her in the meantime from taping over the hole on the extension we had or just trying to make the bolus extension work with the pump (which ultimately is what we did overnight).

I tell the woman MY CHILD CAN'T EAT WITHOUT THIS TUBE.....she does not eat by mouth.

Do you know her reply?

Brace yourself.......




"Sorry, Ma'am it's a special order item and it will take two weeks to get it to you".





WHAT?!

I reiterate AGAIN that Makily can't eat without the tube, SHE WILL SHRIVEL UP AND DIE OF STARVATION waiting two weeks for them to ship the freaking thing.

Then she had the nerve (and stupidity I might add) to actually tell me that since it's a special order item.....they don't even make them until you order it, that's why it takes two weeks.

I LAUGHED...VERY LOUDLY IN HER EAR.

I went on to tell her this was unacceptable. She had to get me the stupid tube somehow, some way.

I didn't care how.

She says "well I don't do special orders"

GIVE ME TO THE PERSON WHO DOES YOU FREAKING MORON!!!!!!!!

She transfers me to someone equally as heartless and idiotic.

I go through the entire story with the new asshole and do you know what she has the nerve to say?

"We don't even have an order for that tube ma'am, I can't even try to order it without an order from the doctor".

At this point I lost my cool (okay I am lying, I lost it when the first idiot told me two weeks). I said "Look I don't care what you may have to do, what extra step you have to take but I NEED THIS TUBE and NOT two weeks from now...I NEED IT YESTERDAY LADY"!

THINK OUTSIDE THE BOX PEOPLE.....THINK OUTSIDE THE BOX...WHAT PART OF MY KID CAN'T EAT WITHOUT THIS TUBE DO YOU NOT UNDERSTAND?!?!!!?

Am I speaking Greek or something!?!

THROW ME A FREAKING BONE!!

So I ask her what she suggests I do. What should I tell Makily when I can't feed her for the next two weeks? Sorry Makily....the lady on the phone couldn't send us your tube because she didn't have a piece of paper and it was a special order?

I asked her what she would do in my situation.....I say "If it was your baby, I am sure you would find a way to get the tube....and NOT in TWO WEEKS"!

YOU KNOW WHAT SHE SAYS?

"Ma'am, I would follow the same procedures I am following right now with you!"

I laughed and said "Well I feel really sorry for your kids!!!!!"

She says she will "see what she can do".

That's the last I heard from her.

When I hung up I had to run to pick Makily up from school and then take her to therapy. I wasn't sure what I was going to do.

I called Allen and asked him to google "AMT" (the button manufacturer).

He did, then he called them and guess what?

HE GOT TWO OF THE EXTENSION TUBES OVERNIGHTED TO US FOR $30.

It took him all of 10 minutes.

SHAME ON YOU APRIA......SHAME ON YOU!!!!!!

I wasn't going to call them and tell them how incompetent they are because it just puts me in a really bad mood and nothing ever changes with them.

Three days later I get a call from Apria. Verifying that I ordered a new AMT button for Makily.

sigh

NO YOU IDIOT, I DIDN'T ORDER THE BUTTON......I ORDERED THE EXTENSION SETS...THE FREAKING EXTENSION SETS!!!!!!

I swear I am going to have high blood pressure and gray hair.

So I tell that lady what a moron she is (and honestly she just was thrown into it and had no clue what was going on....I feel bad about going off on her now, give me a break, she called me while I was in a cramped dressing room with BOTH kids in the double stroller SCREAMING). I go through the whole story AGAIN which just pisses me off that I have to waste my breath for the 900th time with these idiots. She tells me she will "check it out" and call me back.

That was six days ago.

sigh

Fast forward to this weekend. Makily's extension tube kept coming unattached from the pump. Meaning it fed the bed, her car seat or her diaper. The extensions are really only made to use for a week then thrown out. We have had to use these more because it's all we have right now. This morning we get her up for school and she is laying in a puddle of formula....fed the DAMN BED again. THANK GOD for her Sleep Safe Mattress....it just wipes right off. (Shameless plug there :-)

We get her ready for school and start a feed on the pump. Allen drives her to school and THE DARN THING UNHOOKED FROM HER TUBE AGAIN!!!! Fed the car seat, she was drenched and a mess by the time Allen got her to school, so he turned around and brought her right back home.

I call Apria to find out WHERE ARE THE EXTENSION tubes that I ordered.

I go through the entire story with the supervisor (I asked for her off the bat because I did not want to go through the entire story more than once). She does not apologize for the stupidity....she puts me on hold to check on it. Comes back and says that our local branch has them and will be sending them to us today. I ask her why I had the issue when I called about the tubes to begin with. Does she not see that it was a bit ludicrous that I got NO HELP and left to figure things out on my own? I went on to tell her it took us 10 minutes to get the tubes overnighted from the manufacturer. That it makes no sense why they couldn't have done the same thing.

Her reply?

"We didn't have the order".

SIGH

I give.

Here's my problem....I get they didn't have the order.....I get it. I get that it was special order and they don't always do that.

WHAT I DON'T GET IS THE FACT THEY DIDN'T CARE/UNDERSTAND THAT MY KID COULD NOT EAT WITHOUT IT AND TRY TO FIGURE OUT A WAY TO GET IT TO ME AND ASAP!!!!

It takes minutes to get the order. Dr. Pierre is usually always good, especially in situations like this. Even if they didn't have the order in their hands at the moment they shipped the extension tube.....really who was going to know that? Who would have found out? A five year old kid COULD NOT EAT without this tube and so I think it was worth the minimal risk of sending us a FEEDING TUBE and getting the order a day later.

We got the button with no order?

I told the lady on the phone that I pray she never has a child or a family member in the situation my kid is in. I told her that if that ever did happen to her I pray that someone would help them more then they had helped us.


END RANT.

Never a Dull Moment.

We have so much fun around here lately.

Let's see.........where to start?

Makily has developed diarrhea. Her poop is no longer normal poo. It's watery and yesterday had little white blobs in it? I know too much information right? My only guess is that it's from the increase in Topomax...which by the way we still have not gone ALL the way up to the dose they want her on. I pretty much can guarantee though that if I call neuro about it they will say it's not from the Topomax because my understanding is that diarrhea is NOT a side effect. I am convinced that it IS the Topomax though because well that is the ONLY thing that has changed.

I don't really want to try and change her seizure meds right now since they are suspicious of new seizure activity. I would hate to wean her off one to wean her up to another and chance her having a massive seizure. I sort of would like her off the Topomax and on something else (because it could be causing the infrequent urinary retention) but again I don't want to risk a seizure at least until she's had the 24 hour EEG and it comes back normal (assuming it comes back normal ).

I say all that to say this.....I really don't think she is having any new seizure activity. I know I sound lame and maybe in denial a little since the EEG DID indicate her brain is mis firing, she is sleepier lately and she had that weird episode at school. I really don't know. I start to think about going back to the original Topomax dose because I really DON'T believe she is having an issue but on the other hand if she had a seizure after I did that I would NEVER forgive myself.

BANG HEAD HERE!

If I sound non chalant about all this, I guess it's because I kind of am just getting used to this crap. I almost don't even panic anymore. I have noticed that I have changed A LOT in that respect. I am not surprised that all this is going on. I am not making myself totally sick over it because I really can't do anything about it except what I am already doing. I find myself shaking my head saying "yea of course there is all kinds of new weird crap going on with Makily.....of course.....this is just normal for us". We have a stretch of "everything is fine" and then weird stuff happens with this kid. I just hate it for her, because I feel like she has enough to deal with just on a daily basis and so it makes me a little angry that every now and then she has more things added to the pile.

sigh

In other news Allen has been tentatively diagnosed with Diabetes.



sigh



No, I am not kidding.

We just recently established with a new doctor. Allen went in for blood work early last week. Doctor says his fasting blood sugar was high....it wasn't horribly high so I didn't panic at first but his HGB A1C was elevated also and well that basically confirms Diabetes.

So Monday he goes in for a Glucose Tolerance Test and that will give us a gauge of how severe it is or is not (I am thinking it's not that bad). My hope is that the GTT comes back borderline and that we can try to get things under control with diet and excersize. I would rather HE NOT be put on medications. The doctor agreed with that and said Allen is too young for him to commit to medications. Allen is a truck driver so he eats what he can when he can. He also has a horrible addiction to Mountain Dew.....obviously NOT good for someone who is a suspected Diabetic. So we have stopped Mountain Dew altogether........Allen is not thrilled but he knows he has to be healthy for the rest of us as well as himself.

All is well.

Makily is doing okay with the new med change. We are only doing 1.5 pills in the morning and two at night. She's on the apnea monitor at night and so if she has any episodes it will go off.

Mrs. Leslie at school has told me on several occasions here and there that Makily went nearly all day without a wet diaper. I noticed one day last week that she had only peed minimally and then the next day Mrs. Leslie said she hadn't peed that day at all. We have not decreased the amount she is eating at all. I can't give her extra free water because she can't tolerate the extra volume in her stomach. She starts retching. So I called Dr. Pierre and we have a consult with Nephrology for June. Emanuel Syndrome children can have kidney problems so we figured we would be safe then sorry. She had a renal ultrasound when she was in the NICU and they said it was okay but I really don't trust ANYTHING that Shands told me back then. We'll see.

Maybe she is just learning to hold her urine. I don't know.

Don't know what's gioing on with Doodles...

...but she's keeping us on our toes.

I took her to school this morning and let Mrs. Byrd know that we had increased her meds from 1.5 pills twice a day to two pills twice a day. I gave her the increased dose last night before bed. Then she got two pills this morning at about 6:45 am.

Well I got a call from the school at 9:00 saying Makily was acting different and was asleep. I thought the nurse was a little crazy because it didn't make much sense for her to be asleep but acting funny? I asked if she was breathing okay and she said yes and then asked me to come pick her up.

I got to the school at 9:30 and she was asleep in her chair. I didn't think anything was any different at first. Then the nurse held both Makily's eyelids open and she never flinched. She didn't pull away, her eyeballs never moved. The nurse shined a light in both eyes and Makily continued to just lay there. Her pupils were TINY but were slowly reacting to the light. She held her eyelids open for at least 20 seconds. Makily does not like ANYTHING on her head or face.......you can't even wipe her nose or change her bib without her getting agitated and kicked or whined at....even if she is asleep. So the fact that the nurse held her eyelids open and shined a light in there for that period of time with no reaction scared me. Her heart dipped down into the forties during this "episode".

I picked her up out of the chair and did everything I knew to wake her and she just laid there. I decided to stay at the school until she woke up. My fear was that she was about to have a seizure and I didn't want her to do it in the car while I was driving. Ten minutes later she sat up, opened her eyes wide, smiled at me then clapped her hands like nothing ever happened. She acted TOTALLY normal the rest of the day....happily, sweet and giggly.

VERY WEIRD.

She was in that state for nearly an hour. The nurse thinks it was a seizure. I immediately assumed it was from the medication increase. I called Neuro and spoke with the Nurse Practitioner. She blamed the med increase. I told her that the doctor told me yesterday that the increase would not cause any drowsiness or side effects which is why I was concerned. She told me that Makily's body had to adjust to the new dose and that she is going to be sleepy. I reiterated what the doctor told me the day before and she told me that if it made me more comfortable I could back off to 1.5 pills in the morning and two at night....then slowly wean her up from there. I again told her the doctor told me that Topomax will not cause those issues and she said to hold while she spoke with him.

sigh

She came back and told me that he does not think the increase in Topomax had anything to do with the episode this morning. That it does not cause drowsiness but that if I was more comfortable I could try the dosing the Nurse Practitioner had suggested.

So I kind of feel like they don't believe it was from the meds, they don't know what it was and so they are just offering me this solution.

I don't know what to think.

Tonight I gave her two pills and I will just do 1.5 in the morning and go from there. I kind of feel like they are leaving it up to Allen and I to decide what to do and I just don't know.

She's back on the apnea monitor again.

I'm too paranoid now.

I can never fully relax with this kid....never.

I don't have a bunch of time but wanted to update real quick.

Monday Makily had an EEG w/Neuro. She's had one every six months since the seizure.

The last visit with the Neuro he explained that she was on a very low dose of meds, had good EEG's and CT's since the seizure and he wanted one more good EEG. As long as that was okay he suggested we start weaning the meds.

Well it wasn't okay.

sigh

I had a message from the doctor himself on my phone yesterday.

I knew it couldn't be good because all her other EEG's I just got a thing in the mail saying "normal EEG".

I called back today and spoke to the doctor. He said that Makily's EEG was abnormal. They didn't see a seizure but her brain is mis-firing. He asked if we had noticed a difference in Makily lately and I said she has been sleepier. He said those mis-fires could cause seizures..possibly (and I have questioned if she had these type in the past) absence seizures...which could in turn cause the excessive sleepiness.

sigh

He upped her medication and is working with the insurance company now to set up a 24 hour video EEG. He said he wants to catch the mis-fires and see if they also see a seizure. She'll need to be in the hospital for 48 hours but hooked up to the EEG for 24 (that is going to be a load of fun by the way).

When we hung up, I cried. I have told myself time and time again to not get too relaxed about ANYTHING when it comes to Doodles but I guess when things are good for so long....I trick myself into believing that Makily is just fine.

Harsh reality is that she will never be "just fine".

I hate HATE the extra chromosome she has.

One tiny piece of genetic material can really mess up your body.

It can really wreak havoc on so many lives.

I wish I could give her back every single thing this stupid gene has taken from her.

One year ago today....

......a four month old baby boy was placed in my very welcoming arms.

He smiled at me the moment our eyes met and I immediately fell in love.

It has been a year of many emotions, ups, downs and uncertainty.

We remain uncertain in the outcome of J's case.

Being J's foster mommy is the SECOND hardest thing I have ever done.

I wouldn't take any of it back.

Not. one. second.

It is BECAUSE of all we went through with Makily that I believe we have had the strength to continue on with our journey with J. She prepared us for the emotions and uncertainty.

I find it incredibly ironic that today ON the one year anniversery of J coming into our home, I recieved a call saying that the agency is reccomending Allen and I, as J's prospective adoptive parents. This is not something we believed they would recommend for reasons I can't go into here. Just know that an incredible weight was taken from my shoulders when I was given this news.

That being said...we know this is still far from over. Things can change in an instant as it has before in the past and so we continue to guard our hearts. We continue to hope for the best....but to expect the worst.

We continue to love J with all our hearts and treat him as though he is already our forever son.

We pray that one day soon, he will have our last name.

I long for the day I can splatter pictures of his sweet face all over my blog for all of you to see.

Until then, this will have to do....