Skye is the limit

What a week...

2012-03-05T23:15:00.000-05:00

A lot happened...and I wish I blogged throughout but honestly didn't have a second.

To anyone that hasn't been aware of what Skye "has" as far as medically. She isn't only a Cystic Fibrosis kid...shes sadly faced with so many DX that she really doesn't need in addition to.

She has CF, hearing loss, auditory neuropathy (deaf), mitochondrial disease, low muscle tone, dysmotility syndrome, enamel dysplasia, sleep apnea and a few others...with that being said

Pictures speak a MILLION words...

*ATTENTION*

I have not shared this much on my blog in months, please do not criticize or leave negative comments. I use this blog to raise awareness and document how amazing our daughter is. She deserves the privacy that we give her now and this is going a bit far for my comfort level. Again, I am doing this to show exactly how strong she is and how much she goes through...How badly we need a cure for the many genetic diseases/conditions she has and how important it is to raise money for new medications, treatments and research. By no means am I blogging for sympathy or any of the horrid things that have been said to myself and the many other mothers/parents who share their childrens stories of living a 'sick life'.

She went in with a bowel obstruction, spent 3 days in and it was cleared and we avoided surgery. We went home and the next morning she woke up with another issue. Her left cheek was swollen again and with her enamel dysplasia I knew exactly what it was...AGAIN. She had another abscess and this time it was from this poor child puking up...well you can only guess what she puked up considering she had a bowel obstruction...spare the details for the weak stomachs. We got admitted less than 24 hours after being discharged again...surgery the next day and IV antibiotics for 2 days following. Now on oral antibiotics for another 7 days.

As you can see, she is the strongest...went from bed bound and in extreme pain...morphine wasnt cutting it... to smiling at her little brother by the end. That my friends is AMAZING. I am really so proud of her, her strength and her will to get through and do anything without letting a damn thing stop her.

She is by far my hero and only at 3.

HOMEMADE WHAT??

2012-02-16T16:08:00.000-05:00

Homemade AMAZINGNESS

So I have gone home made on a few things, stretching a dollar further than I thought it could be stretched. And here are a few of my home made lovelies...

We cloth diaper, so of course we cloth WIPE too.

How do I make them?

Just cut up old receiving blankets, plop them into an old wipe container and Chabang!

My wipe solution is simple:

A dash of baby shampoo

A dash of baby lotion

A dash of tea tree oil

Top it off with water and BAM all done!

I just put my solution in a squirt bottle I got from the hospital. RE-USE~!

Skye is potty trained, thank god!

BUT we still save about $65.00 a month cloth diapering and cloth wiping!

So thats $750.00 a YEAR!

Dish washer detergent? I think so!

Grab equal parts washing soda and borax, a container to store it in and an old spoon!

You will only need about 2 tablespoons of this for each wash, throw some vinegar in the rinse too!

(Also, don't forget to label the container...this is awfully close to our sugar jar *see behind* and you obviously don't want to eat this)

This saves us about $15.00 a month, $180.00 a year! YAY!

Laundry detergent...thats my next adventure, when ours is all gone. And again, another $15.00 saved, $180.00 a year.

TOTAL: $1100.00 a year

That is totally worth it, especially when I actually have FUN doing this!

Of course you can make bubble bath too!

All this makes for a very happy baby

Cha Cha Cha

2012-02-12T00:36:00.000-05:00

I pretty much stink at blogging. I keep saying that I will keep it up and I never do.

Boy o Boy.

Well, Skye had her pre-op appointment this week for her surgery in March. It went well, aside from the Doctor in the room next to us who got her finger bit off by the kid she was working on. The screams were pretty intense. Awesome to think that I now know what it is like to hear a woman belt out in pain as her finger is being severed. Ha!

I am actually nervous about this one, I am thinking that may be due to a combination of length under anesthesia and that she is older and fluent in sign.

Before she couldn't talk to me and tell me anything as she was screaming from being afraid of being put to sleep. Now I am nervous as all heck to see her sign something to me as she is being put under. The look I get is enough, never mind words along with it.

Ryver is a giant child.
At just three months old he is in 6-12 month clothing, I think that says enough. He does still have the holes in his heart but nothing serious at the moment.

Having a new baby, buying a house and planning a wedding all at the same was probably a bad idea. Our new house is amazing, we love it...love all the projects we get to do and being able to call it our own is probably one of the most rewarding things in life. (Of course, 2nd of our children and marriage) We do everything ourselves. DIY projects are an every weekend thing in our house. (Aside from the new septic system for obvious reasons) I really love making all these memories. The house has pretty awesome character as it is...being built in 1927 will do that for ya. BUT adding our character to it is the perfect finishing touch.

Planning a wedding...thats another story. I don't ever want to do it again; its stressful and expensive. The crazy things people do now a days with weddings is insane. I just don't fit into that category of giant parties for 30,000 dollars. And as we are with our house...we are with our wedding, DIY. I really didn't look forward to sitting down for dinner and dancing for 5 hours either.

So, we decided to spring for a larger ceremony with the works and a cocktail hour after.

And planning this is plenty.

P.S.- I do plan/hope to get some of our DIY house projects up on here soon with pictures included!! (Before and Afters are AMAZING to see)

Life is crazy, crazier and busier than I would like. Otherwise I would have time to blog everyday as I did before.

Enjoy

Worldless FRIDAY

2011-12-09T20:10:00.000-05:00

And baby makes FOUR.

2011-11-09T15:27:00.000-05:00

One month later...

Skye Update:

Skye has had a crazy month. She was admitted for a week with the thought of yet another diagnosis...but they were wrong. They thought she had a lymphatic malformation, turns out it was a horrid tooth abscess which you can thank her Enamel Dysplasia for. Her teeth did not form right in utero, she has no enamel on them and they have craters, holes and wearing on them. Its painful for her and obviously very easy to get cavities, infections and more. No matter how good we brush them, how well we make sure she washes out after she eats or drinks something with sugar in it and no matter how much fluoride she takes its the inevitable. So after a week long admission, tests like crazy, IV antibiotics, MRIs, Xrays, Ultrasounds and surgeons in and out they finally discharged us with a "tooth abscess". We got home, went to bed...to only be right back to the dentist the next morning. I just didn't think it was right, she was so ill looking and her mouth was just horrible looking. Needless to say, I was right. They rushed us to the Hospital and she was in surgery no more than 2 hours later. Could have gone septic, the surgeon couldn't believe she was discharged.

So since then, a lot has happened. I'll skip to the most recent event...we had a few follow up appointments for her teeth and an appointment was made for another long surgery to do a crazy amount of work to her mouth.

She will be in the OR for about 2 hours and they will be working on:

Molding, possible extractions, caps, reconstruction and complete cleaning of all of the "craters". Thankfully we have a few months before we have to go through all that nonsense.

She is sick right now, 'sick protocol' is in affect so hopefully we will breeze through this one. Clinic is Thursday, I feel as though we live at the hospital...even when we are not admitted.
Aside, Skye is a great big sister. She is a huge help and sometimes TOO much of a help! We do have some "attention seeking behavior" but I guess that is expected. Thankfully its nothing too crazy anymore and she has realized that Mommy still loves her.

Family Update:

BABY

Ryver Gordon is born!

He is a week old and adjusting well.

8lbs 7.9oz 20 inches

He is amazing and of course we are enjoying life as a family of four!

Ryver Update:

Ryver was born in at the tail end of October. That gives us two October babies! He is such an easy going baby, barely cries outside of wanting to eat or have his diaper changed. I couldn't ask for an easier baby.
Sadly Ryver isn't as 'healthy' as we were expecting him to be. The day after we got home from the hospital we went to get blood work done for him. He seemed to be a bit jaundice, which he was. We have been back every day since, spending the first 10 days of him home with us at the hospital. Between Ryver and Skye we have had over 18 appointments combined. It's rather sad when you can't enjoy the first few days together as much as you should.
Anyways, during the visit his amazing pediatrician noticed a murmur in his heart. So he calls for an EKG and it didn't look right so the cardiologist ran over to do an Echo cardiogram. The cardiologist found 2 holes in Ryvers heart, and 2 other issues that we will discuss more about on the 16th at his next follow up. Right now we are watching him carefully to determine if he needs heart surgery or not. Making sure one of the holes doesn't get bigger and hoping the other hole closes up on its own. So far no signs of CF and we are waiting for the newborn screen to come back still.
Both kids go to genetics at the end of the month and Ryver will be looked at then. Skye is being tested for mitochondrial disease and Ryver may end up being tested for that as well. Most cases of mito disease is maternally passed down and if Skye has it the chances are very high that Ryver does.
Aside from that, he is AMAZING and I couldn't image life without him now.

Its crazy how much you can love someone.

Last pregnant picture with Ryver, 39 weeks!

My beautiful Son

Flash back!

2011-10-12T01:13:00.000-04:00

This time last year...

She looks so ill, its scary to look back on these pictures.

I didn't realize how bad she looked...

And how much improvement she has made.

Despite the added DX she has had in the time from then until now, she is taking the world on 100x better. She is so damn strong. And she may fall back into times like this from time to time but she pulls right back like the survivor she is.

She was still so beautiful.

I love you Warrior!

We will update soon on the last 2 weeks of craziness from admission and surgery!

Love you all! <3

Can you really?

2011-10-05T22:36:00.000-04:00

She is by far a warrior.

Though I wish what made her a warrior not be so horrid...

Its been a long couple weeks...from being sick to admissions, discharges, emergency surgery and going home to fight yet another battle. I couldn't be more proud of her to say the least.

Waking up to her pulse ox going off this morning after only 3 hours of sleep...turning around to hit the nurse button and seeing her staring down reaching to rub my arm with that crazy bloody but so so beautiful smile. I hadn't seen her awake since before her surgery so I was ecstatic to be woken up so "Skye like".

I wonder what life would be like...without all of what we go through as a family. If we would be who we are now and how we would go about life. When you know how bad things could get in the near future I suppose you walk around with much more than most. Whether that "more" be pain, heartache, worry, love, hate, compassion or fear. And whether or not the people around us see that...its there and in so much more quantities than a human should have to carry upon themselves.

Smiles do wonders, laughs make things seem okay, talking lightly of something so heavy makes us seem strong...

But are we really?

Do we have the strength like people believe we have?
The front of acting okay when tears are in need more than you could imagine gets sad to think about...
When crying doesn't seem acceptable anymore because...why would we cry? We apparently should just "get use to our life style". But can you REALLY get use to so much?
No, you can't.

Happy Birthday Skye!

2011-09-22T22:10:00.000-04:00

Pictures from her Party!!

2011-09-10T15:12:00.000-04:00

Well, we have been busy.

I really need to add an hour to my days so I can blog daily like we use to.

I loved looking back on all the amazing things we did and having it all documented. Its also nice to look back to when we have a question about her medical stuff, its all right there.

So here is my "I promise to blog at least 3 times a week" and hopefully more.

A lot has happened and I am glad to say that we don't have much drama to report from Skye and her medical stuff, CF wise atleast.

She has been sick 3 times in the last 4 months but its been over a year since her last tune up of IVs in patient so I am not too surprised. She has managed to get sick all three times and keep herself out of the hospital. Steroids and antibiotics have been kicking it, thankfully!!

We have a school meeting for Pre-K in a few days, we have decided to home school, regardless of what they say at this meeting. I am sure its going to be a battle as all school meetings are with special needs children. Thankfully, I am conferencing in so I don't need to flip out in person. Holding my cool over the phone is much easier! ;)

We have a VERY full month and it looks like this is how it will be for awhile. She is booked solid until the 29th, every single day...some with more than one! Its crazy!

Aside from all that, we went to the Zoo again today. I think it might be the last one of the year, I am losing my ability to walk.
Dad ran an crazy race and sported CF!

We have been planning our wedding, planned Skyes 3rd birthday and HAD it, planning and getting ready for little brother to come and trying to keep house. Its amazing how much you can really do.

Skyes birthday picture are on their way! Keep a look out!! <3

Choices.

2011-08-24T16:27:00.000-04:00

Making decisions for a 3 year old is hard enough when they can't tell you what they want...from feeding them to what we do for the day. But when it comes to surgeries its another story. How can a mother decide whether or not to get a surgery done when its not mandatory nor guaranteed?

When the odds are against us and the risks are higher than a "normal" childs risks would be. When you see her thriving how she is now but have a small chance of making it easier for her in the future. When she seems so happy exactly how she is but could resent you for not giving her the chance. I guess its one of the HUGE choices that we are left to make as a family...without any input for the child who is actually going to get the surgery done or not. If only.

I couldn't imagine how far she would of made it, it was just last August that we found out and now she is communicating with ASL more than we ever thought...almost to be fluent for her "corrected" age. Another year down, planning another birthday party and getting ready for another year ahead of us with so many new additions. It seems like this year flew by and we are faced with so many decisions and choices to make for her that will determine how her future plays out. Does that seem like a lot? It FEELS like a lot.

Every parent has the same thing to do...make decisions for your children that will pan out their future for the most part but I guess when its on this kind of level its just nerving to me. I think everything happens for a reason and I would never regret anything because it has gotten me to where I am now in life...which is an amazing place to me. I just hope that these decisions we are making for her...from the hearing world to the deaf world, everything in between...homeschooling ECT that is one of those "everything happens for a reason" things and it puts her in just the right place...where SHE wants to be.

We will be going up to Boston for a Cochlear Implant evaluation. As a family we decided that the risks are too high and the chances of it working are far too low. As many know, because she doesn't just have hearing loss and has auditory neuropathy as well that it greatly reduces her chances of a CI being successful at all.

We are going to the evaluation so we can tell her exactly why we decided not to go through with it...after much debate. Who knows, maybe they will come back and tell us she isn't even a candidate and the worry of her resenting us will be gone. But as a mother I want to make sure she knows we put MUCH thought into it and that our decision wasn't only on the fact that we didn't "want" it for her.

On a lighter note, BIRTHDAY TIME!!

She will be THREE, holy cow, right?!

Another fun time of planning and in 2 weeks she will get to have another great party!

I am almost 30 weeks pregnant and boy am I getting nervous.

We are getting together the last of things and finally broke down last night and signed up for the registry at Babiesrus.

I can't wait to see him and I am HOPING that I remember how to do all this stuff!

LOVE is so strong...

2011-07-27T22:17:00.000-04:00

My world...minus one in the making.

LOVE is strong and will surpass anything.

Our beautiful family of 3, soon to be 4!

Never give up.

LOVES LOVES LOVES

Little Brother

2011-07-15T21:55:00.001-04:00

We got to see Little Brother this week! The ultrasound was a level 2, which we will be getting every couple weeks until I go into labor. I was nervous per usual but everything came out okay so far. We got great pictures and I just LOVE 3d/4d images! He looks just like Skye, we made one handsome dude!

The name has been decided and will be announced soon, or when he is born...that is undecided :)

TOO CUTE!

Things will Skye are well, we are still waiting for the sleep study results but other than that we are doing great! We have a school meeting next week to talk about going to the school of the deaf and whether or not we will be doing home school full time or part time. I can't believe its been almost 3 years since I have been blessed with Skye, the good...the bad and the ugly...all well worth it.

love.

2011-07-08T21:57:00.000-04:00

Funny the way life works, when you think you have it all but really you weren't even close. Losing it "all" is the one way to find out you really have it ALL now. ♥

Pregnancy is going well, I am 23 weeks...another ultrasound in a week to check on little brothers intestines. We are getting closer and closer to him coming and things are starting to become very real.

As I pack away a lot of Skyes things...booster seat, 24 month clothing, younger toys ect...I realize its ALL coming back out in a matter of months. Skye is turning 3 in 3 months and this baby is coming in 3 months. Definitely not what I expected. Skye is so excited, she practices on her baby dolls all the time and gives baby brother SO much love already! She makes me excited. She has taken over the role any man could play and I am sure she will be just as much help if not more when he is born. We don't need much more than each other. I am thankful for that.

We had her sleep study this week at Hasbro to check again for her central sleep apnea issues. Its been a little over a year since the very first one we had...which was a disaster. This one went MUCH smoother, got a great study which means results we can rely on! It'll be another couple weeks before we get the results I believe, hate waiting!! She loved staying overnight at the hospital, I was able to make it more of a sleep over environment than an admission to a hospital.

Popcorn, coloring books, stickers, candy and movies...don't have a chance to realize where you are when you have all the goodies we brought!

LOVE

Air show!

2011-06-27T23:29:00.000-04:00

So glad we went!

The traffic was horrible and I almost turned around but remembered a back road route, thankfully! And made it there very quickly!

Met up with Katelynn, Gabby and the gang! Fun per usual.

Then finally spotted Jen at the end! <3

Picture time!!

Everyone look!!

We met new people, had our first time together at the air show and made NEW memories to last a LIFETIME!

Wise Wise words...

2011-06-22T00:03:00.000-04:00

If the grass is greener on the other side, water your lawn...don't buy another house.

We are watering our grass...things will bloom.

2011-06-07T01:03:00.001-04:00

so, since when cant people have their own thoughts? expressing those thoughts on their own blog maybe? why waste your time reading my blog if you have negative things to say? you must have plenty of time of your hands to stalk a blog of someone you dont think highly of...i can tell you, i certainly dont read yours...and whoever you are...if you dont have a blog i promise you i dont go out of my way to read into your life at all. hows that? hmm.

to clarify, i dont think im the only one with a quote sick kid. and that statement alone leads me to believe you dont have a quote sick kid. this is my blog, and thats enough explination to your shitty anonymous comment. get over yourself.

are parents with sick kids not allowed to express theirselves because there are other parents with sick kids in the world? so we aret entitled to speak our minds on subject matters? so does that mean because there are other parents with healthy advanced children you are not allowed to express how you feel about your healthay advanced child?

and currently...right now i dont know what its like to have a bond with a talking child...and i dont know if i ever will. hopefully one day i will, that this pregnancy goes better than my firstbut i cant see into the future, nor can you so lets not jinx it...jerk off.

Different.

2011-06-06T22:04:00.000-04:00

Brains work strange...I don't understand my brain. The way it thinks, works and makes me comprehend things. Switched at birth finally came on today, we have been excited to watch it because there is sign language used by one of the girls in the show and her mother... The story is awesome and shows how ignorant people are to the deaf world...how not many realize what goes on or how much our children are missing. That god for bid we don't try and "fix" our kids with cochlear implants...and for heavens sakes why would we ever think about throwing them in a "deaf bubble" school?!

Most children and adults who are deaf and hard of hearing are happy with it...why would they care? They know nothing different, that is their normal and they love being themselves. Would YOU want to be a hearing person and get a device implanted into your head that STOPS you from hearing? Or how about we cut out the use of words and make you start learning to listen with your eyes and talking with your hands? How would that feel? Learning an entirely different language just so you can communicate like normal...

Because when people say "don't you want your kid to hear?" "Why would you want to sign instead of talk with her?" Do you ever think...maybe that we have no option? That some people can get cochlear implants and some can't...successfully. Or maybe, just maybe we don't think our kids needs to be altered as they were born this way for a reason.

Skye can't hear, she talks with her hands and she sure as hell HATES when you talk to her and don't at least try to sign or gesture your words.

Not many people understand, if you don't live it you will never know...so don't try to understand. Your child hears, you talk to your child and your child talks back. So does mine, my child talks to me and I talk back...we just do it differently.

Being deaf isn't horrible, I can promise you that.

And having a deaf child allows you to have a bond with your child that not many of you will ever know...as I am sure having a talking child is a bond I will never know.

And there is a plus side of it all, 90% or more of you don't know ASL so we can talk as much as we want about whatever we want and you have no clue what we are talking about.

But...we know what you are talking about...whether they can hear or not, reading lips isn't as hard as reading hands! Now who is the "stupid" person?

Mommy says I love you...

Skye says I love you TWICE! <3

Living the nightmare again.

2011-06-03T17:46:00.000-04:00

CF is officially back in action with Skye. We had a nice long break from her lungs being okay, although we did have intestinal issues we were happy to keep clear of her lung problems.

They are back, and they are pretty upset with Skye.

She just ended her 5 day dose of prednisone and it didn't do anything at all.

The allergy medication has slowed down her runny nose but not the mucus productions in her lungs.

She has formed a nasty cough and rattly breathing as well as retracting.

It has been a year since she has been admitted so this was somewhat expected but we were hoping not.

She is doing well otherwise, its not bring her down much at all. She is still her bubbly self and running around like crazy. She loves to be outside but its being restricted because of the breathing issues.

Now we are starting her 14 day dose of antibiotics, hopefully something changes sooner rather than later so we can avoid admission.

On a lighter note, SPAGHETTI PIZZA anyone?!

I always have left over spaghetti and meatballs and this has been my use for it as a second dinner for the week. Its amazing.

Skye wanted to make it with cheese sticks, I don't recommend this...use shredded mozzarella!

Set the oven to broil.

Take the left over spaghetti and put it in the frying pan on high, crack open 3/4 eggs and stir them into the pasta. Keep on high until fully cooked. Put your toppings on. Pasta sauce, meatballs, cheese, ect.

Put it in the oven on broil for 5-10 minutes, depending on how you like your pizza cooked and the toppings golden brown, ect.

And wallla!

We put MCT oil in a lot of what we cook because the calories are VERY HIGH. So we use the MCT oil in this for the bottom of the pan!

Breakfast anyone?

2011-05-29T11:15:00.000-04:00

Thanks to this oh so lovely weather...

Skye was doing very well, for the last 3 months she actually went down in some medications and was holding her own. Thanks allergies, pollen, spring/summer and Cystic Fibrosis. You ruined it!

Never mind the inhaled lung medications...

10:00am Medies.

Skye being deaf is always right in my face, its hard to ignore. I've gotten use to it and accepted it...although there are times where it starts to upset me. CF is easy to ignore most parts of the day when she is not showing many signs or symptoms. But this is when it gets hard, hard to ignore. It hurts when reality hits you in the face.

2011-05-28T17:02:00.004-04:00

I have been slacking in the posts, again.

And this entire post just got deleted. LOVELY.

Ok, here goes again.

Last year was much easier, she has just had 2 weeks in the hospital on IVs and we totally ready for the crappy allergy season. This year, not so much.
No allergy medicine is working and now its bringing on a cough, I am nervous that she is getting sick.
Four allergy medicines and no change is not a good sign in my book. Have I mentioned how much I dislike Cystic Fibrosis?

Skye went for another hearing test when we picked up her new hearing aids. Sadly, her hearing has gotten worse.
Her right and left ear are now moderate to profound slop which means she is moderate to deaf, her hearing is extremely limited and what she does hear the Auditory Neuropathy takes over and destroys that as well. She is being evaluated for cochlear implants in 3 months, I am counting down the days. Although Skyes language will always be ASL the cochlear implants might help her hear sounds that are important to hear (alarms, cars, telephone, ect.) She will most likely near hear anyone speak words, only "gibberish". She is going for more genetic testing to see if her AN is genetic or not and what type it is so we know more about what her future will hold.
In the last 3 weeks Skye has done amazing with sign language, she is signing like crazy and understanding so much more than she was showing us! I am so entirely thankful that I was able to learn so fast and that we all enjoy it...who wouldn't?! Communication with your child is amazing, speaking or not. I love it. I love that Skye loves its, that she is so good at it and that she is proud of herself!!
I was so worried that she wouldn't catch on and we would be stuck in limbo but she really pulled through, she loves being herself...and I am so glad that so rocks at it!

The CF walk this month was amazing, I can't wait for many many more!
Skye got to meet her future god parents and loved them! duh!
She also go to meet her soon to be teacher of the deaf! yay!

Its been extremely hot, too hot for us.
I am more than thankful that our pool is open, so thankful!
I love our new house and all the amazing amenities!

Branched out...

2011-05-24T13:10:00.000-04:00

Of the bubbles fish mask!

YAY!

2011-05-19T14:59:00.000-04:00

Got an amnio a few days ago...

Testing for 90 CF genes, so I am not too happy that there are 1400 more that we won't be testing for.

I won't ever get one again, I am such a chicken with needles, passed out twice on the table.

I should get results within 15 days.

Skye is well, I go to RISDEAF tomorrow to check out the school.

Looking into homeschooling for now until things get figured out.

She will be evaluated for a cochlear implant but I am not so sure about it.

Baby Bean...

2011-05-05T16:42:00.000-04:00

I had another OB appointment today, along with running around like a maniac.

Baby is fine, heartbeat is beautiful and S/he was moving like crazzzy!

I was told by my lovely Doctor that my "whole thing is great". I started to laugh, I hadn't a clue what my "whole thing" was...especially being at a OBGYN! HA! He continued to say my "Aura" was much better than the last 2 visits with him, that I was all smiles and seems like an entirely different person. He said he was sure it was just everything that had been going on. I was glad to hear that from someone.
I am smiling more, glad to be where I am with Skye in life and finally content with everything. Oh what a relief!

I think its time to re-do our blog layout, mucho needed!

Skye update!

We had a second opinion appointment with our new audiologist. Thank god we went because this woman is amazing. She re-did her hearing test without the ABR part obviously. Her left ear is mild-moderate hearing loss and her right ear is completely shot, moderate/mostly severe hearing loss.

She mentioned to me that the hearing aids could be bothering Skye with her having auditory neuropathy as well. Some people with AN can't do well with hearing aids. I asked if I should be having her in speech therapy 5x a week like our last Doc said, and that if I didn't I was being a "bad mom". She said that its not realistic for Skye to do that, nor would there be much result. That Skye needs to learn a language and that her language is ASL.

That was the first time I actually got told to pursue ASL without any hesitation...without making me feel bad. It was a constant battle with her last audiologist, with all of the speech therapists and E.I. people. Finally the speech therapist that was with us for this appointment (who skye will be seeing from now on) also agreed that it wouldn't make sense to try and teach her to speak when she is unable to hear.

AMEN LADY! Why in the world have I had to wait so long for people to all agree on ONE damn thing for Skyes communication?

The only thing I can think of is that they were waiting for her to show them more with her AN and hearing loss. But holy cow, that was precious time that I could have been pushing more ASL than I was, using less speech and helping her become more fluent in sign.

Oh well, the past is the past. We are here now, ASL livin'!

I am glad to be in one world with her now, being stuck in the middle of "what do we do?" was hell!

We are waiting to be scheduled for a Autism screening as well, and we go back to the audiologist in 2 weeks to talk about doing another ABR and adjusting her hearing aids again.

(ABR is sedated so we are trying to avoid this, for obvious lung/tracheo issues)

LOVES!

SO CRAZY!

2011-05-03T17:39:00.001-04:00

HAPPY CYSTIC FIBROSIS AWARENESS MONTH!

I am going to try and do the 31 days of May dealio everyone is doing!

We are doing great...

Skye and Mommy are finally all settled into our new apartment!

So far so good.

YAY!

She is getting so big, I can't believe it.

So is baby bean!

S/he finally popped out and Mommy is looking pregnant now!

Skye is by far the best big sister, she already makes sure the baby is okay!
Kisses and hugs for baby bean everyday from Skye, without a doubt!

Skye and Mommy also have new friends!

They came over to help us this week, I am glad Skye has a friend to play with now!

Then Skye decided that Desitin was fun to put all around her mouth...

YUM!

She LOVES feeding the animals, a little too much I would say.

So glad that we are on a road to a beautiful new life. Mommy, Skye and Baby Bean! <3

A new life to live...

2011-04-13T21:40:00.000-04:00

Well just when you think you have enough on your plate and nothing else could happen...

BAM!!!

Things HAPPEN...and all at once.

We are not full of luck, never have been and the odds are against us that we ever will be. Although we have miracle, and many of them. Skye is...despite the added diagnosis's and what nots...healthy for the spring/summer season right now. As she lays next to me having a little trouble breathing...nothing alittle albuterol and Flovent can't help so...hold on one second!

K, back. Now, where was I? Oh yeah....

THAT is a miracle to me. And its enough of a miracle for me.

I have had some MAJOR life changes in the last week.

I was OFFICIALLY diagnosed with POTS Syndrome (Postural Orthostatic Tachycardia Syndrome) and Autonomic Neuropathy. I am sure that means nothing to most of you, many Doctors say "huh?" when I mention it.

To cut it down short and "sweet" its a heart and nerve condition. It is a life long condition in my case, its debilitating, the "quality of life" is considered much like someone living with COPD, there is no cure but there is treatments. It is hard to treat, much like CF...its all "masking" the symptoms as best the medication can. I have had it since I was 16 years old, finally diagnosed by an amazing Doctor after a long long long time. I should have gone earlier to the cardiologist but life with Skye got in the way as I realized it getting worse.

If you are interested in what it means for me, what I go through daily, how it feels to have it, ect...just GOOGLE it. I haven't found a site yet that has some crazy wrong information about either condition.

Amongst other things, I have a baby on the way!!! I am 11 weeks along, due November 3rd/5th...not sure what date they finally decided on. Praying hard for a healthy baby, as always.

While Skye and I are flying sole through this road again, nothing can stop us. She is my world, my shining star and all I need to stay strong.

I am a Single, Pregnant, CF Signing Momma struggling with POTS Syndrome and FIGHTING for my baby girl living with Cystic Fibrosis, Auditory Neuropathy, Brain Damage and so much more...

Here it be.

2011-04-06T16:38:00.000-04:00

Our Great Strides 2011 awareness video.

I do like this one, a lot.

PLEASE consider joining our team "Skye is the Limit" on May 21st at Slater Park in RI.

If you are not in the area and would like to help Skyes team, Skye is the Limit go NATIONAL please feel free to start your own team in YOUR state and walk in honor of Skye and all of the other children battling this horrific disease.

We are also opening up orders for Team Skyes the Limit shirts again!

Deadline is April 30th for sizes and payments.

We are still working out the details and waiting for the final front and back of the shirts to be designed!

Shirts will be mailed to you if we are too far :)

Wow.

2011-03-25T15:19:00.000-04:00

Its been awhile, over a month actually.

I have been exhausted for reason to be disclosed soon enough.

I apologize for my lack of communication to my friends online and off. As well as my lack in the blogging world.

All three of us are good.

Skye is rather well, she has been coughing more lately. Thanks for the lovely weather change and the asthma/allergy season that got her last year.

In May she was admitted, I am hoping we avoid that this year but she is starting to show the same crappy signs as she did around this time.

Skye has been learning sign language of course, she is doing very well. Her hearing aids are still an issue with her, I wish I could just tell her she needs them but for obvious reasons she can't hear me.

Anyways, love love love.

Oh yes! and Skye and Mommy are still of course selling scentsy!!

Check out our site!

www.dreamwickless.com

One more...

2011-02-22T14:45:00.002-05:00

Its confirmed, Skye has brain damage in her basal ganglia.

I guess look it up if you want to know about it.

I also wanted to give you all a chance to hear what Skye hears on a daily basis. Because Skye has auditory neuropathy she is unable to hear words. She also has hearing loss so alot of what is said regardless is missing because she is almost deaf.

Alot of people that see and are around skye think she can hear because she will turn when you call her and respond to sounds.

Skye is HEARING something completely different from what you are saying.

So if any of you are reading this, please please please stop saying "oh she can hear me!" or "oh she said "uhoh!"

Yes she hear you, and yes she can say the tones she hears you say.

But you don't need to keep reminding me that she really cant hear what you say, she won't ever be able to and she won't even be able to talk or communicate in ASL enough. With Skye having Brain Damage her gross motor skills not being well makes it hard for her to form alot of the signs she knows.

She is stuck in her body...shes a 28 month old stuck in a 10 month old body, in a 3-6 month language ability and its hard, she is amazing and does as much as she can but I am so sick of people around us rubbing it in my face. So stop.

Now take the time to listen to this.

Don't take advantage of anything.

Of hearing, walking, talking, eating, breathing, ANY daily normal life things. Because Skye is fighting to do those things with all she has, stop and think about how much YOU can do and how much so many other children and adults CAN'T.

The beginning is what SKYE heres YOU say to her. As it is going on in the recording you will be able to understand what the person is actually say going from profound auditory neuropathy to the original words.

CLICK HERE.

Welcome to Skyes World.

Bringing up the Spirits!

2011-02-13T20:00:00.001-05:00

Skye has had a horrible week/end.

First she started puking. Then the Doctor called after two days of it and said he wants her in for an X ray and GJ tube study that night. Of course we didn't get in until the morning after BUT we got there.

So she goes in for an Xray and they of course say that it looks out of place so we need to bring her in for a GJ tube study. They get it prepped and the second they put her up on the screen and I turn around I can already tell its out. They inject the contrast into her tube and it proves me right. It was pulled back and almost all the way out of her intestines.

This was only a week after we had to get it replaced for the same reason and when they told us we would most likely have to get it closed up and bring her in for surgery to get another one placed right next to it.

Anyways, he comes out to have a meeting with us. He says sorry, blah blah blah. And to call first thing on Monday so we can get into surgery for this week.

Well we go home, everythings fine. We realize we will have to go the weekend being extra careful, dealing with puking all night and trying to keep her hydrated. Fine, we have done it a million times before.

Its bed time and we go to put her down in her crib and CRAP her tube gets caught on the crib and pulled out. My brain quickly thought "UGH, ER all night and admission. GREAT."

To all those interested, this is what it looks like when a GJ tube gets pulled out half way.

I wasn't going to let that happen quickly found a way around it.

We had a G tube laying around from before she had a GJ tube placed so Daddy got her G tube and we pulled the rest of her GJ out and put in her G. That saved us a night in the ER. YAY.

Morning comes and we call the oncall Doc to let him know. Thankfully its the same one from Saturday and he said he would call us back with "options". We get the call 5 minutes later and he said we can admit her or keep her home if we can keep her hydrated until tomorrow morning when her regular GI Doc comes on. Skye is scheduled for a sedated MRI on Tuesday. If they make us go in tomorrow to get it placed back in, thats another day of sedation. Then sometime this week we will need to go in again for surgery to close up her current stoma and open her up in another spot. UGH. Ok. So thats what we do. But hopefully we can cancel out one of the sedations considering that would be 5 in less than 2 weeks. All I know is I am worried to shit, she can't survive on a G tube for much longer without getting sick and we had to have all this happen on a weekend. Lovely.

Tonight was much better, all crap aside we took a trip to the mall.

Mommy, Daddy and Skye went into pandora to get a charm for valentines day.

Pandora is always a good time.

I was picking mine out, Skye loves them. For some reason I said "wouldn't it be cute if Skye had one too!?"

20 minutes later we are walking out of the Pandora store with a new charm on mine...and our 2 year old daughter with a freakin' PANDORA bracelet.

Yes, we got Skye her first pandora bracelet and a beautiful purple charm she picked out that means "Serenity and Peace".

I thought it was perfect for our little girl, she needs all the serenity and peace she can get!

Daddy is just too good to us!

I am SO excited to build our bracelets TOGETHER...this means the world to us. It's more than special. I am so thankful to be able to do this with her and hoping for many more years of mother daughter time!

Goofy time! Spirits lifted and we are ready to be silly!

Clean hands!

LOVE

Cha Cha Cha

2011-02-05T14:24:00.000-05:00

A lot has been going on since the last post.

No time to blog I guess.

We have another surgery coming up, still waiting to schedule.

I am going to post the details when I have more time to sit down and type.

Still waiting for the MRI on the 15th and blood work for the SNP micro blood testing within genetics to be done next week.

Its been a busy month already and we have so much more left to get done. Feel free to email me if you don't hear from us for a bit. Blogging is so hard to get done lately.

On a happier note...

We have been looking forward to spring so much that we are already looking for some backyard swing sets that would be safe for Skye. With the ongoing balance/gate issues it makes that hard for her to enjoy BUT we might have found of reasonable!!

AND

Skye is LOVING scentsy still!!

With everything going on, shes still got her smiles in!

MMM YUMMY!

KISS MY HAND MOM! haha

And thanks to all of you who have ordered from us!! This has been so fun for Skye and we can't wait to keep this going!!

Run over to our site, 10% off for the month of February!!

Skyes Scentsy!

Loves!

Can you sign SHOES?

2011-01-30T21:17:00.000-05:00

Skye is showing you all how to sign "SHOES".

Her most favorite part of getting ready!

She loves her shoes!

She was getting silly!

And she got her shoes!

YAY!

Oh! And Skye won a beauty pageant and got a beautiful crown!

(minus her hearing aids, she would rather be without them.)

Nuero.

2011-01-27T12:28:00.001-05:00

Sedated MRI being scheduled. They believe the Basal Ganglia part of her brain is damaged. If not, possible Mitochondrial Disease or Muscular Dystrophy and will be testing for a few others as well...

Thank you, ASHER!! <3

P.S.-For the jackass who said "no wonder your kid is so fed up, from all the drugs you did." NOTHING IS DUE TO ANY DRUGS I DID OVER 6 MONTHS BEFORE I CONCIEVED SKYE. ITS ALL GENETIC, SO GO F YOURSELF. Shows how brilliant you are woman.

.

2011-01-24T22:02:00.000-05:00

The genetics appointment wasn't what I was expecting.
I figured we would be getting blood work done that day along with a quick talk about her history.
We have another 2 week wait before she gets her blood taken for the SNP micro testing.
Then a 4-6 week wait from there getting results back but...either way at this point the results I was going for don't matter.
Skye was amazing today at the 3 hour appointment, as always. I am blessed to have such a layed back, outgoing daughter.

We talked about her enamel dysplasia and agreed that it was caused by her life threatening situation that occurred in utero. That it didn't look like it was genetic type because it only affects 8 of her teeth and its not the "normal" looking enamel dysplasia.
Anyways on from there she checked out the rest of her for any abnormal features. She said Skye was perfect, beautiful at that. She does have clubbed fingers, but I think they are cute and didn't even notice. I guess thats mother love? Well anyways, I love my little girls clubbed fingers.
Then we went on to talk about what was going to be done in testing. They said that we will be looking at each chromosome to check for any deletions and copies, this is the SNP micro testing that will be done and sent to GA to one of the Labs that specialize in reading these tests.

Anyways, to get to the point of this...
She and I talked more and she said that she has never seen one diagnosis tie together all of Skyes issues and that she can't think of one that would. She also mentioned that everything that we are trying to figure out...Auditory Nueropathy, Deafness, enamel dysplasia, not having the ablility to talk, walk well, balance (no gate), develop normally are all things that could of happened in utero. By that I mean when her intestines ruptured it caused so much throughout her body that when it all shut down she lost A LOT.
They think that when Skye went through that that oxygen deprivation to her brain and the toxins throughout her body causes brain damage in those areas that she is having difficulties in and just stuck at developmentally. As well as destroying her auditory nerve, causing hearing loss and her gate/balance...not just while walking but sitting as well.
When we play with Skye we have to support her so she doesnt fall, the littlest tap on skyes shoulder will send her falling down even when she is sitting. I know its a little thing but GOD HOW I WOULD LOVE TO BE ABLE TO SAY "BOO!" TO HER AROUND THE CORNER WITHOUT HER TUMBLING DOWN AND SMACKING HER HEAD ON THE FLOOR, STILL MANAGING TO GET THAT GIGGLE OUT FOR MOMMY TO HEAR. Or run up behind her and tickle her without having to hold her up while doing it so she doesn't lose balance. I just want her to have a life without complications, a NORMAL life...but I know as sad as it is...THIS IS SKYES NORMAL.

It explains the enamel dysplasia down to a key and now it explains these other issues. Or atleast I hope...I mean, there is still a chance that is more than this. That on top of it all she also has another genetic condition.

Skye was lucky to survive and I was told today that she beat out a very high mortality rate which I am proud of.
And thats crazy to think...I am PROUD of my daughter for beating the odds of a mortality rate. Not proud that she said her first word, ran for the first time, ate a whole meal, or anything else that I would be proud of if she COULD did it. And maybe even down the road being proud of her making honor roll...nope, not this mama. I am just proud she is a survivor, my survivor. She beat the odds and is ALIVE.

Well, where we stand right now we are living day to day. Rather second to second...I hate to think to far into the future because we just have no damn clue.
Will she EVER be able to walk normal? The balance is destroyed, brain doesnt "grow back". Shes stuck at a 12 month old level and isn't getting better, at all. I STILL can't believe my daughter will never hear her mothers voice how it really is, that we will be talking through our hands and listening with our eyes for the rest of her life. Will we find out more complications from this like we have been? Are we just going to keep finding more and more wrong?! I can't stand not knowing, and we will never know. Its just too much sometimes. And we are stuck in limbo.

The Geneticist said this is the worst place for a mother to be and she is RIGHT.

The wait begins...

2011-01-23T21:37:00.000-05:00

Genetics tomorrow, 8am.

Nervous, for Skye.

Waiting for things like this is more than painful for me.

Skye baby, warrior girl...we love you!

Dream

2011-01-19T13:31:00.001-05:00

Friends at last.

Skye had a visit/daycare center for a night.

She had a blast.

Dream.

Signing Skye

2011-01-16T20:00:00.001-05:00

I realized that its been months since we found out Skye suffers from Auditory Nueropathy and being deaf and I haven't EVER showed you her progress.

Skye has been amazing, lately she has caught on and I swear she has been keeping it all in for awhile.

She asks how to sign everything by picking it up and showing it to us.

We have spent a lot of money of flashcards designed for deaf babies to learn sign language and she is OBSESSED with them.

She won't go anywhere without them, she even falls asleep with them...PROOF BELOW.

She brings them to bed and learns SO much.

WE HAVE BEEN BINKIE FREE FOR 2 WEEKS WITH NO PROBLEM WHAT SO EVER!

Its almost like it never existed. Shes so easy going.

Every sunday we go to a pet store down the road from us to get our monster fish some tuffie fish to eat for the week. This is Skyes FAVORITE outing. They have alligators, HUGE snakes, pigs everywhere, lizards running around, tortoises and MUCH more.

Skye loves her FISH, they are her little escape from the world.

We have two tanks, one that we breed fish in for skye to see the babies come and one that we call our MONSTER tank that we have are aggresive fish in that skye watches all the little fishes get eaten. (sounds bad but i promise its just nature)

So today we came home with another pet.

I needed a new center piece for our table and this was PERFECT.

We found a beta fish that is BEAUTIFUL and an did an amazing set up for the "tank".

SKYE LOVES HER!

Skye signed fishy for you all! Check her out!

I am glad that we have ASL in our life, that it was easy for the three of us to learn and communicate and just how BEAUTIFUL it is!

This is the sign for Fish!

Here is our new buddy!

(Before anyone yells at me for having a fish in a tiny vase like that, beta need to live in very small tanks, they die VERY quick if not in a small area...I am the fish EXPERT.)

We have SO much to tell you all, as Skye has a lot going on AND we had some visitors and they all had a blast together. Pictures to come!

ER again

2011-01-09T19:27:00.001-05:00

Oh lovely.

6 hours later and we find out that they have...what? what was that?

OH YEAH!

NO ANSWERS!

How can you make us wait 6 hours to only say they don't really know what to do with her butt?

They ended up telling us she has Staph infection and possibly MRSA.

We are home with a topical antibiotic and back to the hospital tomorrow morning.

Skye has been sleeping, all day. We got back from the ER and down she went at 2:30. She will remain there until morning apparently.

Something was said by one of her Doctors the other day that somewhat made me feel better. I had mentioned that we are having potty training issues. That so much is affecting her ability to LEARN to go potty on the potty even though she knows when she needs to go.

The Doctor didn't even hesitate and said "Don't potty train her right now. She doesn't need the extra stress and pressure. She is fine."

Lord, for whatever reason that just made me feel so much better. I felt like everyone was asking me if I was potty training her or if she was potty trained. That so many other moms have their child potty trained by Skyes age, ect. But PHEW. That crap is over. For now.

A bit after our snow storm we gave Skye her 2 hours off of her feeding pump and went exploring int he backyard and through the neighborhood. My little doughgirl!

WAIT! I forgot to let you all know! Skye and Mommy have a goal to meet!

We have been working towards making our goal for a few days now and we still have until the 19th! With only $180.00 left to go we are SO close!!

If we make our goal we will be donating 10% of our profits to CF!

Visit our Scentsy website and make your contribution to our FIRST goal and donation to CF!

www.skyesthelimit.scentsy.us

So a simple diaper rash turned into a horror movie scene into a staph/mrsa infection.

More pain than I have ever seen Skye show in awhile. And that says ALOT.

Oh Sweet Skye, you are my hero. Plain and Simple.

We love you.

Princess, Planned ER, Oh the life...

2011-01-08T12:22:00.000-05:00

Interesting how one can have a PLANNED ER visit?

Not with SKYE AMANI.

I called her G.I. doctor yesterday for the chemical burn/cheese grated butt she has accumulated over the last few days. Don't ask me why I called her G.I. Doctor but he always has answers just not always the ones we are looking for...so I guess I just answered that question.

Normally, you would call a pediatrician about a insane diaper rash, but I guess in the SPECIAL NEEDS MOM world...pediatricians just don't even come to mind anymore.

He calls me back, as he always does.

Asks what it looks like and I explain...

"It looks like she just got back from a horror movie, they chemical burned her a** and finished her off with a cheese grater. I can send you a picture I took if you want."

His response (in his crazy argentina accent) "Oh no no, you painted a fine picture I know exactly what you are talking about,"

GREAT! So we know what to do then.

He says to go get TRIPLE PASTE. (Who knew it would be a $35.00 tub of butt cream with only 16 oz in it!)

Anyways, we continue to talk, he says the dreaded words...I just really thinks he needs an ADMISSION. UGH.

I said can it wait until after the weekend? Of course it can, that was a stupid question. I guess I was just starting him off on my reasons why she doesn't need to be admitted.

I talked him out of admitted her for the weekend and went on for Monday. So now, we call Monday morning to give an update and see if the changes that I have tried to make to avoid an admission has worked or not.

So far, last night it has but I don't want to jinx anything!

We have a PLANNED ER visit today, he wants us to go in because he thinks he butt might be infected. How lovely. I guess thats what you can expect on the road we have traveled lately.

I normal diaper rash gone TERRIBLY wrong and falling into INFECTION. Oh Skye, my lovely Skye. You are just one of a kind my love.

Overall, I am thinking my call about the crazy diaper rash was his "last straw" for Skye and he just wants to figure out so badly what is going on with her. We will be going to the ER after she wakes up from her extremely long nap and hopefully we don't get crazy terrible news there. Pray for no ADMISSION monday or at all.

Daddys LIL Princess!

LOVE

WHAT WHAT?!!

2011-01-06T16:58:00.000-05:00

Mommy and Skye are SELLING SCENTSY!!

Check out OUR SITE!

AWESOME?! YES!

My motivation? SKYE! (of course)

We thought it would be a good thing to do as a family and at the same time, helping to pay the bills we have. I love to see Skye get excited about things coming in the mail and she LOVES to put things into boxes/bags/ect so this will be perfect for her!

Our scentsy order comes in, Skye gets to put YOUR order together and then we send it out to YOU! All prepared with LOVE from SKYE!

If that doesn't sound good I don't know what does! :)

We hope to soon be able to donate a portion of our order profits to CF families and the CF foundation...but we can't do that without YOUR HELP!

Check out our site, Host a party, Buy some awesome products and maybe even Join our team!!

www.skyesthelimit.scentsy.us

SKYE IS THE LIMIT!

LOVE

I've been holding it in...

2011-01-04T11:58:00.000-05:00

We didn't want to make the big announcement until we got some pictures...

We of course only had time for half a session beautiful our beautiful daughter is lovely toddler.
Our outside shoot will be coming up soon.

But...here is a sneak peak into our life!

I SAID "YES!"

DUH!

No date set.

A wedding just doesn't fit into the mess of things right now but our commitment to each other is of course forever.
I couldn't have asked for a better Fiance and Daddy to my beautiful baby girl.
LOVE

Sneak Peak...

2010-12-30T22:14:00.002-05:00

While I had a second to upload pictures I wanted to give you a sneak peak of our Christmas EVE, Christmas and a few days after...

Will post more soon enough.

Quick Skye update:

We have tripled her medication that they are trying to get to work for her dysmotility syndrome nonsense. The one that makes her walk around like a zombie and sleep 95% of the day. Yeah, that one. So starting tonight that will be started. As well as a strong does of streroids and antibiotics for a lung infection.

Stupidness if you ask me.
I am tired of them telling me they are sorry for not having the answers. Just shut up and find them.

Anyways, as I would rather not get into all of the "news" of our lives right now...

Sleepy time with Mommy and Daddy to avoid choking on puke is always a good idea.
LOVE and HAPPY NEW YEAR.

Waiting Waiting Waiting...

2010-12-28T11:15:00.000-05:00

Don't you HATE waiting?

Waiting for bad new and heartbreak?

For when you know you need to know but don't want to know.

How badly we NEED to know the answers and how BADLY we don't want to know the answers is a battle we talk about daily. Usually when Skye is asleep, we are in bed or laying down just thinking, waiting for her to vomit, start coughing or screaming out in pain.

I don't think many people know exactly what goes on with us on a daily basis. Well, I know you don't...becuase we don't tell much people, if at all.

Whats the point?

When people ask "How is Skye today?" Do they REALLY want to know the answer to that question? Do they really want me to go into detail, let them know how bad she really is, how worried we really are, how confused the doctors are and how much pain she is REALLY going through? Or do they want to just hear "good, and yourself?"

I struggle with this question and the answer. I hate it really.

I hate when people walk by and smile and say "how are you?" And I have to reply "Good, and you?"

I am NOT good, why in the hell am I saying I am? Because in REALITY thats what you are expected to say, to move along the conversation and just act like everything is hunky dory.

We are so not "HUNKY DORY". Not at all.

I know over a year ago we were pretty okay, and our huge worries were not so HUGE now that I look back on it. But now, NOW is different. Now is a whole other world.

Now is HELL in my eyes and I know it can get so much worse.

We don't go to church, simply because we don't have time...although we have began to believe in god more. Think about it all more.

All because of us not knowing, at all...what will happen today, tomorrow or in a few minutes.

Skye is playing with blocks right now, looking at her from afar she looks like a normal, beautiful 2 year old child.

Then I look at how much she has AROUND her...tubes hanging out of her stomach attached to an IV pole, a mask covering her face as she breathes in medications that a 2 year old shouldn't be breathing in, a vest shaking the crap out of her that is so uncomfortable I can't see how she does it and the syringe she holds in her hand along with the 8 other syringes filled and 11 pills she has beside her...waiting for her to take before she can even start her day. Skye opens her mouth to talk and nothing comes out but gibberish that no one will ever understand but Skye herself as she was born with another condition that affects her life so greatly she is unable to talk.

She speaks with her hands and listens with her eyes.

What mother would be okay? Having to see this?

I have had 2 years right? To deal with it all, well some. Only a few short months to deal with other conditions and a few short days to deal with the new ones. I have come to terms that it is okay to go loco for a couple minutes, to sit and vent to my other half and cry to him as if the world was coming crashing down around us because in reality...that IS how I feel.

I have lost a baby, the baby who was inside of me, who was suppose to come out healthy and happy.

Instead I gave birth to a very sick child going into surgery only hours later, who gets sicker as each day goes on, as the years grow older she gets weaker. As the years go on she is diagnosed with more and more and in a sense I am loosing her as well. I lost my healthy baby and now I am slowly losing my beautiful baby girl who I fell in love with the second I saw her amazing face.

Waiting, waiting, waiting...that is all we are doing now.

Waiting for genetic results to be done and come back, waiting to see the neurologist to figure out what else is wrong with Skye, waiting for the next lung infection, waiting for the next weight check to see how much she HASN'T gained any weight in the last 8 months, waiting to see what more medications they will be putting her on to just mask what is going on becuase they have NO answers, waiting, waiting for the future and how much more of a future we have.

Long time no BLOG...

2010-12-24T11:12:00.002-05:00

We have been up to alot lately. Organizing, doing paper work, doctors appointments, making new appointments with new doctors, and SO much more that we are holding off on revealing just yet.

Skye update: She is currently off of the medication that seemed to be holding off her puking episodes at night. She started to puke again at night so after a few days we spoke to the doctors. They failed to let us know that we had to do 3 weeks on 5 days off so her body won't get immune to the medication. So after 4 days of puking...now we have another 5 days, most likely more. We restart again in 3 days so hopefully it works again, if it doesn't I am going to lose it.

We have been sent back up to Boston, well IDK if I should say "back up", we never left there. But now she needs more studies done.

Skye sees a geneticist at the end of January because her Doctors just can't figure "it" out. She is losing the ability to work and has no balance, much as been "thought" to be wrong but can't be confirmed. I won't be going into any of this much as I'd AGAIN like to keep it private for Skye until we ourselves know more. She is also finally (after months) getting into the nuerologist which is much needed.

Oh how I love my Skye baby, I so so love her. As I sit here with her typing away she just keeps reaching over to rub my leg and turn to smile at me. We have many conversations without any signing at all. The three of us are all able to "talk" to eachother without any ASL. Its amazing.

Skye is getting very good at ASL, she can understand about 40-50 signs and sign about 10. She is very shy and holds back with signing but Gordie and I both see them. Sometimes she will sign to herself in the crib. I think she is still getting use to it all. She is so use to her own language.

We call Skyes language "SKIBBERISH" for Skyes gibberish.

Some children with Auditory Neuropathy only hear...well...gibberish so thats how they talk.

Ske will think she is having a true conversation with us while all she is saying is mumbo jumbo. We go along with it and most of the time she is satisfied with our "response". Lord how I love that little girl.

As a mother I think I have reached my breaking point months ago...but I keep coming back as super mommy. Can't give up. I know there are answers out there, and I will dig until I can't dig anymore. We will get reasons why.

In no particular order, picture overload of some of the things we have been up to:

First snow in our new house, santas cookie baking, ginger bread house making, LOVE...

LOVE

Just Pain...

2010-12-14T21:02:00.000-05:00

And heartache.

Over and Over and Over again.

Does this road end?

The end is NOT what we want...but what we have to work ourselves up to be okay with.

I am not okay with that end...not when the beginning and middle are not of any quality.

Out...

2010-12-12T10:37:00.001-05:00

We got to go out! ON A DATE!

And the best thing about it...we got SMILES out of Skye.

Yes you got that right, SMILES!!

Oh I couldn't have been happier.

Thank god for Christmas Cards with Applebees gift cards inside. This made my month.

Now for a day off from any work at all...COMPLETE family day, just the three of us.

Doing what families should do.

LOVES LOVES LOVES!

I can't wait to get started on the list of of things to do today, I woke up at 4am...and apparently that proves how excited I am.

I know in the back of my head that nothing has changed and that she is still struggling BUT tomorrow will be ALL SICKNESS ASIDE.

We are playing house..."Normal, healthy family" house.

BTW, You are all very dissapointing on my last post about guessing how much formula. BOO to you all.

She takes in 48 ounces of formula through her feeding tube a day...that is 1440 calories in 22 hours. More than what I need a day in calories and TRIPLE what a 2 year old needs for calories in a day. Yet, she is still not gaining weight. Should we put her on mystery diagnosis yet?!

Who can guess...

2010-12-10T23:16:00.000-05:00

How many ounces of Elecare 30cal Skye takes in a day...

She is on her feeding pump 22 hours a day

at a rate of...

(just kidding, can't tell you that or you would know the answer!)

This is what we mix every morning, plus some at night because the jug isn't big enough for the entire feed she needs in 22 hours.

READY...

GUESS!!

LOVE

Christmas Tree Time...

2010-12-05T16:36:00.000-05:00

I wasn't going to share these pictures because Skye isn't doing well but I changed my mind. This blog was started for awareness, for Skye, for me and for our family. One day we can look back on this and that is all I care about. I write for us, no one else.

Welcome to our life again, although it might not be as peachy and bright as it was 4ish months ago, we are still hanging in there. Strong, for our little girl.

It's just all for her.
We love you Skye baby!

These pictures are not what you are use to seeing of Skye. Please do not leave any arrogant comments as I have decided to share these on her for those who care. If you don't have anything nice to say, just don't say anything.

Of course, red for Connor!

Connors Leggo from their family to ours.

We love you guys!!

Hanging the stocking above the fire place!

Our first time we can ACTUALLY do that!!

Daddys Topper!

Thanks Ducky!! <3

LOVE

And so it goes

2010-12-03T19:40:00.000-05:00

Skye has a new friend. She comes equipped with a feeding tube and all.

Its rather cute how she instantly loved her when she saw that on her tummy.

Skye update:

We are still going through test and procedures for Skyes dysmotility syndrome. She is on a lot of medications between all of her medical conditions and shes very sleepy.

She is now on a completely digested formula through her intestines 22 hours a day and is still venting through her stomach. I hate blogging lately. I just don't feel like talking really.

So much has changed in the last year with Skyes health and nothing is for the better.

She just doesn't look like the same old skye, and we don't get as many smiles.

I am sick of watching all of this.

I want her to be okay.

CF related stuff...same of crap. We haven't ever hit winter yet and she has been on 3 antibiotics.

Now she is on another one for an infected GJ tube site. They also burned her granulated tissue off which was completely ridiculous to put her through after I said 4 different times that she doesnt need it. I was right, but who listens to mom now a days?

All right, off to give 19 medications and treatment for the night.

Goodnight all

.

2010-11-22T11:31:00.000-05:00

Skye had a little issue over the weekend. Her stomach acid ate away quickly at her GJ tube and the balloon shunk, tube came out and balloon popped. We had an ER visit and then the next day went in to get it put back in. Thankfully Skye does somewhat okay with going under. She does has malrotated intestines which makes the procedure more difficult and more "risky" so it does take longer than we wish for.

Skye is home now, and okay. We are still battling an aweful cough but I am not convinced it is a cold. I think we just have a new "CF cough" on our hands. It is just sucks.

I hate winters.

We are getting ready for thanksgiving.

Oh how I love food.

Can't wait to get started on cooking!

Skye in recovery...

And I thought I would add in a cute pictures of her a few days ago. She was rockin daddys gear while shopping at walmart.

LOVE

Hoping...

2010-11-15T12:43:00.000-05:00

Blogging seems to be thrown to the back burning lately. I can't believe I use to be able to blog every single day.

I guess life is just taking over, not just regular life but the SICK life.

On some good news. An amazing friend put together a walk for Skye for her Senior Project.

She did a wonderful job and raised 1,800 for CFF!

We managed to get there, alittle late, but we were there.

Skye isn't doing so well so we couldn't bring her out for the entire time.

We had a great time and some beautiful views. Of course, Rhode Island is always the best place to be for a nice view. :)

Skye has her big appointment in 2 days.

The Doctors at our Hospital are going to be getting together again to talk about Skye.

We are also switching pediatricians. We thankfully got accepted by a wonderful doctor who specializes in special needs and can hopefully contribute to try and figure out...well...Skye.

Skye still needs to see a neurologist, many times with auditory neuropathy there comes "brain issues" as well.

Skye has been walking for about 7 months now and still isn't doing so well. She was acting like she was for awhile and then she went back down hill on that part. She falls a lot more and she doesn't have the ability to run. She walks with a very wide stance to keep balance. Her gate is very off.

Skye is also still weak and pale, and is now sick again.

She went 6 days without being sick but it decided to come rear its ugly head again. LOVELY.

Although she is still up at the barstool all by herself and eating a few bites here and there.

Even though she hasn't gained any weight, we keep on keeping on.

This is a battle, we aren't just facing Cystic Fibrosis...we are facing a list of diagnosis, conditions, illnesses and "issues". Sadly, the list just keeps building up...just when you think it's stopped.

I am just waiting for answers again.

Her issue is still there, although with some different medications and formulas it has calmed down a bit. We will talk about this more after our appointment in a couple days.

Hope everyone is well.

Clinic.

2010-11-11T19:23:00.000-05:00

We had clinic today.
Skye has been really weak, tired, pale.

We don't really get as many smiles anymore BUT she does eat a bit better.

She did get over her cold and we are greatful for that.

Skye is colonized in her lungs with Group C Strep. (Not the strep that gives you a sore throat)

Only one that the Doc knows of. And there isn't really any information about it.

So we are watching it.

I hope to be able to give a longer update in the next day or so.

Love.

This time...last year.

2010-11-03T10:42:00.001-04:00

Oh how I miss my little pumpkin butt.

Time flies.

We are all finished moving!

The house is beautiful and I couldn't be happier that we are now settled in!

This move was an important move and it made things so much better.

Skye is happier, we have more room, we are happier as a family and things are so much more relaxed and low key.

Blessed.

Medical update: We are still fighting Skyes CF cold but its A LOT better! I think we caught it just in time with the antibiotics! This is the first time we have ever been able to get over a cold at home. So proud of Skye!
We still have our appointment to see the specialist on the 17th. Nervous...but we need the answers.

Updates galore...

2010-10-29T11:59:00.000-04:00

First, update on Skye. Quick.

We have decided to make our facebook smaller so we can discuss more of what is going on with Skye with those who are close to us.

The blog will be used for more public events and information.

Right now Skye is on a couple antibiotics as she is sick. We are waiting a week and will then continue to try inhaled steroids, of course if that doesn't work we will be admitted to the hospital again.

GI wise we are managing but nothing close to what she should have to deal with.

Appointment for the specialist is scheduled still for a couple weeks from now.

We wanted to share what we have been up to for the lovely month of October.

Oh how we LOVE October!

First we went to Jackolantern Spectacular where there is 10,000 pumpkins carved all over the zoo!!

We also went to our favorite farm and got to eat fresh red potatoe fries, see the alpacas, eat yummy food AND check out a cool dog (atleast skye thought he was cool)!

Then we were off to go through the corn maze and picked our pumpkins!

Came home, clean out the seed, carved the pumpkins and then COOKED THE SEEDS!

YUM YUM!

This pumpkin has some very important words...

LOVE

Super Skye...

2010-10-23T08:25:00.000-04:00

Thank you to a lovely friend who thought of a perfect gift for Skye!

It made her day, her WHOLE day!

Always something.

2010-10-20T20:12:00.000-04:00

It's never a dull day in our home.

But right before we were about to leave for the ER we got a lovely package in the mail.

Our shirts, and Skyes name...second in line...on the back of them!

GO SKYE!

I am sharing our "leaving the hospital" pictures with you all.

We will be getting admitted around the end of the month.

We, thankfully, are able to decide when to admit her and with us moving we have decided to put it off until things calm down at home and we are settled in.

Both the Doctor and us feel as though this is okay.

Now with all the drama going on, I decided to share a bit with you in hopes to stop some of the nasty things being said. I am not sharing a lot...once again...this is for Skyes privacy as I believe she deserves it right now.

Please respect that.

Skye has started on a digested formula through her J tube in hopes to help her until we can get things figured out. With none of the medications working that are suppose to for the new diagnosis we are at a stand still.

Our nights are horrible, days are a bit better although sometimes she doesn't have very good days either.

Surgery may be in the near future.

Our appointment to see the specialist out of State is in about 3 weeks and we will know more then.

Thank you all for your continued throughts and prayers.

LOVE.

Skye says HI to you all.

2010-10-18T12:40:00.000-04:00

Saying Hi to you all!!

To explain Skyes backpack.

Her feeding pump and bad is inside the backpack feeding her through her intestines.

The bag you see hanging from the back on the outside is her G tube vent. Unfortunately the formula you see in there is not suppose to be in there. We are having many issues right now with Skyes health.

As we do not wish to share the details publicly right now we will sometime after November 17th when we ourselves know more things for certain.

Thank you all for understanding.

WE LOVE YOU ALL.

LOVES!

How she got her name.

2010-10-14T21:44:00.000-04:00

Skye got her name "My little warrior" in the NICU.

I found some pictures that were missing...

She still is my little warrior...just my 2 YEAR old warrior now.

Skye turned TWO on the 8th!

Two years of happiness, struggles, pain, love and just plain amazing.

I love you Skye Amani.

"I need a cure..."

2010-10-10T19:16:00.000-04:00

We did a photoshoot with RMG Photography for the fundraiser she is doing for Skye in November!

Pictures came out great!

Can't wait for the fundraiser!

Skye update:

She is currently on antibiotics. And we are waiting still to get into the specialist in Boston to get a second opinion on some new issues with Skye and some reoccurring issues as well.

Thanks for all your love and concern. We appreciate your words, sincerely!

Like Skyes outfit and bow?!

Check it out!

This signing CF momma is a boutique momma too!!

Skyes Limit Bowtique

I want out.

2010-10-06T21:29:00.001-04:00

I just want out. I want her to be free of everything.

This is just too much.

Who wants to watch this? Who wants to live like this?

How can you say there is a god when my beautiful baby girl is barely hanging?!
Who wants to be connected to an IV pole and tubes 24 hours a day 7 days a week?
And still after everything that has been tested, tried, and thought of there is no answer.
Now we are being sent to someone else, in hope for that answer.

I hate this.

Happy Birthday in 2 days.
October 8th.
2 years old.
2 years of struggling and never getting anywhere.
I hope for you baby girl, you are my world.

Skyes Privacy...

2010-10-04T08:11:00.000-04:00

I have decided to keep Skyes medical information private for now.

Things are not going so well, more things are being found and she just deserves the privacy during all of this.

I will be sure to keep you all updated on how she is in life.

We will continue to blog, but only of family life without the s*** details we always seem to hand to you all.

Much love,

Skye, Mommy & Daddy

How do we do it?

2010-10-01T00:33:00.000-04:00

Of course it was hard, its never easier...even when she has been put under 20 times.

And I have no idea how she does it, nor how I.

But we feed off each other.

We are our strength.

It took about an hour and a half.

The entire time I was a wreck of course.

We were told because of her Central Sleep Apnea that she may be admitted after but thankfully we were not.

Little Skye pulled through perfectly.

Waiting to go home...

Now, I have NO idea how in the world I figure the stuff out that I do.

I had no training on the new contraption. I obviously didn't need it but still...did I REALLY figure this out?!

The right bag is her feeding bag.

The left bad is her g-tube vent.

And the tubes go on and on...

We have too many in the crib now, so the pulse ox has been kept to a minimum lately. Three cords in the crib when shes sleeping is just not fair.

Thanks for all of your thoughts and prayers.

Tomorrow...Thursday...

2010-09-29T15:18:00.000-04:00

Skye is scheduled for 7:00am.

She will be getting her G-tube replaced with a J-G tube.

Skye has not been gaining weight and continues to vomit her feeds even with being on the anti nausea medication.

This is our next step to try and help Skye.

We will be feeding Skye through her J tube.

We will be venting Skyes G tube over night to prevent her from puking if the feed goes up into her stomach.

To explain a J-G tube to those who are unfamiliar.

Right now Skye only have one port with one extension attached.

(This is a picture of Skyes G-tube)

I grabbed this picture from a website

See the difference?

The G tube goes into her stomach and the J tube goes into her Jejunum (her small intestines).

Right now we feed Skye through her G-tube which goes directly into her stomach.

After tomorrow we will be feeding Skye through her J-tube which will go directly into her small intestines.

Hopefully this will prevent puking and help her gain back the weight that is needed.

I will be sure to update when I can with pictures on Skyes new J-G tube.

Please keep Skye in your thoughts and prayers!

WHAT?!

2010-09-28T22:51:00.000-04:00

Medical update on Skye in a day or two.

PROMISE.

What have we been up to?!

Football games, sign language and spending much time together.

Do you shop at Skyes Limit Bowtique?

If you do, here is who mails all of your beautiful items for Mommy!

We go watch daddy coach football...

And had a special visit from a dear friend this time.

GO HAWKS!

Connor came to see us...

We, as always, got to see our lovely friend Adriane.

Sign language is so beautiful.

Continuing to learn more and becoming more and more fluent!

Photo shoot for our new outfit.

Skye has been having difficult times again.

Will update soon.

Sorry for the wait!

New things and news...sorta

2010-09-24T15:08:00.001-04:00

We have a few new accessories!

We got her FM System! YAY!!

There are two parts to the FM system, Skyes part and Mommys and Daddys part.

As you can see...

The microphone is attached right below my chin on my shirt and the other piece is on my pants...much like a beeper.

This allows her to hear from more than 6 feet away. I wear this (all day long...just as skye wears her hearing aids all day long) and it microphones into her lower part of her hearing aid that is an extra addition to a normal hearing aid. (The pink piece is the FM part of her hearing aid system)

AND...

With Skyes hearing loss, auditory neuropathy and other disabilities we decided that it would be best to have a sign letting those know to WATCH OUT.

Instead of getting a deaf child sign we opted with the handicapped sign because we think it suits her better over all.

And we got TWO!! YAY for skye!!

One for the top of the street...

And one for by our house, at the end of the street!

Now for CF and G.I. news...

The two doctors are having a meeting today about Skye and we will get a call as soon as they are done.

They are not happy with Skyes health and I think they themselves are sick of telling me "we don't know".

I am going to be waiting for that call, waiting...waiting...waiting.

I have NO idea what will come over it, not a clue.

But I will post when I know.

LOVE US.

Money Saving?

2010-09-24T07:24:00.000-04:00

I was asked to do a money saving blog back a few weeks ago.

Of course I never got around to it.

(I am sure this wasn't exactly what you were looking for but I promise you I will break it down when I have more time. I felt the need to give my blog some attention and this filled in that space for today!)

But, a couple days ago was worth writing about!

We went shopping...and on our tight budget, for groceries.

We managed to get enough a weeks worth of food for $28.00 and 3 weeks worth totaling $84.00!!

We were so proud and excited we had to take pictures!

Maybe it was because we were wearing our "ROCK CF" shirts?!

Must of been.

LOVE

Clinic update tomorrow...or in a few days. WHEN I manage to get the time to because apparently blogging has been difficult lately.

Having a day.

2010-09-21T15:24:00.000-04:00

Thinking...and thinking far too much.

Best day of my life, turned to the most heart breaking painful day of my life....

Nineteen years young and starting on the biggest roller coaster ride of my life.
Two months, Two surgeries.
Million and one diagnosis.
Heart breaking news, one after another.
AND
NO, it has not stopped. It really has only gotten worse.

Still held on with a smile...

Spending our first Halloween and Christmas in the hospital.

Hand in hand, you bet you butt I never left her side. Bunking in the room with her, sidekicks for life.

Little words needed for such emotional pictures.
I am having an emotional day.
EMOTIONS are flying all over me lately.
I want more time, and need more time...

Time Time Time.

2010-09-19T15:39:00.001-04:00

Never without a smile.

You have changed my life and so many others.

We all love you.

SO MUCH.

Just spending lots and lots of time with my beautiful lady.

I love our time together.

More please!

She was happy to eat that day!

This morning and what seems like every morning she is either throwing up or having extreme diarrhea, I am sick of hearing "we don't know whats wrong".

FIGURE IT OUT!

I am going Mommy crazy on her G.I. track soon.

UGH.

Emotions raging.

2010-09-18T11:33:00.008-04:00

I had Skyes meeting yesterday to talk about her health, issues and prognosis.

I have chosen not to make Skyes prognosis public as I believe she deserves that bit of privacy for right now.

My words to all of you:

Enjoy everyday you have with your child, kiss them and cherish them with every ounce that you can.

It has been very emotionally hard since yesterday but this post will remain positive.

(TUTU and BOW made by Mommy!)

Click HERE to see our Boutique!

Before the meeting we were able to fit in an appointment with the audiologist to get Skyes hearing aids. For right now she has just her hearing aids. She will have the FM system added on in 2 weeks.

The FM system is the additional piece put on to both of her hearing aids that microphones what I say if I am more than 6 feet away. I wear a special microphone and a device that looks much like a beeper but larger around my neck or on my pants. This will hopefully help the auditory neuropathy that she has. Only time will tell.

Of course I had to get our favorite colors into her hearing aid. We went with Pink and Purple.

Pink because we just love it and Purple for CF of course!

She has done very well with them so far, but like I said...only time will tell.

Skye primary language will still be ASL and maybe in the future she will be able to learn to talk, if not, that is okay.
LOVE

Skye is the limit

What a week...

HOMEMADE WHAT??

Cha Cha Cha

Worldless FRIDAY

And baby makes FOUR.

Flash back!

Can you really?

Happy Birthday Skye!

Choices.

LOVE is so strong...

Little Brother

love.

Funny the way life works, when you think you have it all but really you weren't even close. Losing it "all" is the one way to find out you really have it ALL now. ♥

Air show!

Wise Wise words...

Different.

Living the nightmare again.

Breakfast anyone?

Branched out...

Baby Bean...

SO CRAZY!

A new life to live...

Here it be.

Wow.

One more...

Bringing up the Spirits!

Cha Cha Cha

Can you sign SHOES?

Nuero.

Sedated MRI being scheduled. They believe the Basal Ganglia part of her brain is damaged. If not, possible Mitochondrial Disease or Muscular Dystrophy and will be testing for a few others as well...

Thank you, ASHER!! <3

P.S.-For the jackass who said "no wonder your kid is so f***ed up, from all the drugs you did." NOTHING IS DUE TO ANY DRUGS I DID OVER 6 MONTHS BEFORE I CONCIEVED SKYE. ITS ALL GENETIC, SO GO F*** YOURSELF. Shows how brilliant you are woman.

.

The wait begins...

Dream

Signing Skye

ER again

Princess, Planned ER, Oh the life...

WHAT WHAT?!!

I've been holding it in...

Sneak Peak...

Waiting Waiting Waiting...

Long time no BLOG...

Just Pain...

Out...

Who can guess...

Christmas Tree Time...

And so it goes

.

Hoping...

Clinic.

This time...last year.

Updates galore...

Super Skye...

Always something.

Skye says HI to you all.

How she got her name.

"I need a cure..."

I want out.

Skyes Privacy...

How do we do it?

Tomorrow...Thursday...

WHAT?!

New things and news...sorta

Money Saving?

Having a day.

Time Time Time.

Emotions raging.

P.S.-For the jackass who said "no wonder your kid is so fed up, from all the drugs you did." NOTHING IS DUE TO ANY DRUGS I DID OVER 6 MONTHS BEFORE I CONCIEVED SKYE. ITS ALL GENETIC, SO GO F YOURSELF. Shows how brilliant you are woman.