More seizures,do they ever stop?

Just when I think we have things semi settled down with Ariel then Daniel's starts up.Saturday night he was in the bathroom when we hear the all too familiar moan.We had a hard time getting the door open because he crashed behind it.When we did get it open he was laying in a pool of blood.Mainly coming from his nose.

We ended up calling paramedics that took forever to get here.But they finally did and we managed to get them into the bathroom.He was very tachycardic with low 02 sats and non-responsive when they got here.He started perking up little by little in the ambulance.We finally arrived at the E.R.

Sorry for the blurry pics my phone doesn't take the greatest ones at night.Once we got into the room and I saw the name of the physician on the board Dr.S,I knew it was not going to be a good night.We have had this guy before.He is not a nice person.He always has this look about him like he just smelled cabbage cooking or something.You know how they say body language is like 80% of communication,well this guys demeanor and body language just exudes arrogance and a God like attitude.

He comes in and says "What's the problem why are you here." the parmedic preceded to tell him what was going on.He knew who Daniel was.About a year ago we went in there for a dislocation Daniel had.We told him the way to put his arm back in.He refused to listen,because of the God like attitude.He spent over 40 minutes yanking on my son's arm unnecessarily.We were furious and then the guy totally flipped out started wringing his hands and running them through his hair in a very unstable type manner.We ended up having to go to a whole other hospital and he had to be taken to the O.R. to put it back in.

I also saw him recently when I took Ariel up there for that severe kidney stones pain.Thankfully a very kind lady doctor came in first,but then he walked in gave me the same line Ariel was doubled over and crying hysterically and he's asking her all these questions I started answering and he was very snappy with me I finally raised my voice and said"look she's in too much pain to answer your questions and she's impaired." He then looked at the chart and saw the other doctor had been in so he left.There is no reason for medical people to be rude,condescending and cruel.If it wasn't for us they wouldn't have a job.

Poor Daniel was looking so bad.His face was all swollen,especially his nose.His shoulder was dislocated and he just felt terrible.They asked him his pain level he said 7 and yet they gave him nothing for pain.They started an i.v. they did nothing with, didn't even give him fluids despite Daniel telling them he felt dehydrated and was getting a headache.

The nurse he had was rude and not helpful in the least.Finally after getting a ct scan and x-ray showing of course his dislocation the doctor wanted to ship him to St.Joes.We told him look give him something for pain to relax him and he probably can pop it in himself.Every other physician there would have given him something for pain ages ago.

So he finally does and Daniel gets it back in partially.He had to do it a couple of times,but finally it was back in.Three x-rays later and we were ready to leave.The doctor wants to send him home him with nothing for pain at all.It was ridiculous.They act like everyone is a drug seeker.It's disgusting.He finally gave Daniel 6 whole pain pills.My goodness.If he would have treated Ariel he probably would have given her Tylenol for kidney stones.


I hate to come off sounding bitter and like a complainer,but my kids suffer through enough and when we finally have to break down and get medical help the least they could do is show some kindness and compassion.I'm going to call the Orthopedic  Surgeon today and get an appointment going and get a set protocol for the E.R. I'm sick of this kind of stuff and am just not going to put up with it anymore.

Thankfully Daniel is doing a bit better.His eyes aren't as black as I thought they might be.He's pretty sore and we've been giving him a bunch of Gatoraid,since the nurse was not with it enough to inform the doctor of our desire for i.v. fluids.Another thing any other doctor would have given him instantly.I'm sorry I am upset.I've been dealing with so much medical stuff,especially since January and I just get tired of seeing my kids get treated so badly,especially since their conditions are through no fault of their own.Thank you everyone for your prayers and support.

Here is my other blog post:http://marrerofamilymakingthemostoflife.blogspot.com/2011/11/doctor-headaches-and-hassels.html

Ariel's story

Ariel's Story part 2.

Ariel through the last year through the good times and challenging ones.

Make a video - it's fun, easy and free!
www.onetruemedia.com

Do you ever feel like you're traveling this bumpy road alone?

Have you ever felt like this? Have you ever felt like no one understands? There are times that I feel like I'm in the middle of a desert with no one around for miles and no cool water to quench my thirst.


I think at times most parents of special needs kids feel alone or isolated.Especially when your kids don't have the typical ailment where there are lots of support groups.Sometimes I see mom's talking,getting together,doing things together and often feel left out.

I wonder is it because I'm that mother? You know the one that is pittied from afar,but yet people don't want to get too close.Some people sadly believe they may catch what my children have,others feel like we are just a burden or something they can't or don't want to handle or deal with,while still others feel that there must be some horrible sin in our lives that God is punishing us for and we deserve to be alone.


Don't get me wrong I'm so thankful for every kind gesture and kind word.Sometimes you just feel like you will never be part of the group.I really don't think we will ever be.


I used to be.I used to be part of the group at church and homeschool functions.My kids used to have lots of friends that were often around and grace many pictures when the kids were younger,but unfortunately one too many times a child witnessed my son have a seizure and no longer wanted to be around.Sometimes they even thought they would catch his illness.I can understand that his seizures are frightening and scary to be around,but you would think the adults would explain things.Often they just didn't want to bother and just moved on.
This has led me and the kids to feel very alone and alienated at times.



But we are a family and we have The Lord.We have each other to lean on and I'm thankful for that.We cherish and celebrate every milestone and every good day.There are time that I do feel low,but those times I often think of the footprints poem :

One night I dreamed I was walking along the beach with the Lord.
Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand.
Sometimes there were two sets of footprints,
other times there were one set of footprints.

This bothered me because I noticed
that during the low periods of my life,
when I was suffering from
anguish, sorrow or defeat,
I could see only one set of footprints.

So I said to the Lord,
“You promised me Lord,
that if I followed you,
you would walk with me always.
But I have noticed that during the most trying periods of my life
there have only been one set of footprints in the sand.
Why, when I needed you most, you have not been there for me?”

The Lord replied,
“The times when you have seen only one set of footprints in the sand,
is when I carried you.”

I know the Lord has and will continue to carry me.I'm so thankful for that.

Kidney issues part 3.

Well I'm hoping we are finally going to be getting a break with all this crazy kidney stuff with Ariel.On Monday we went to the Urologists office in Puyallup.He did an ultrasound in her and said he saw a stone that was looking like it was 6mm.That's when we went ahead with schedule the procedure to remove it.



On Thursday we went in and filled out paperwork.The doctor came and and we discussed what would be going on.Thankfully she got an i.v. in the first time.They took her down for the procedure and the doctor came and got us about 40 minutes later.

He said the stone was gone,but she may still have 2mm stones in there.He said her left kidney was very red and inflamed.We are hopeful that she will be done with all these issues.She is still having some pain and nausea.I'm not sure if that's from just the inflamation another stone or what.My friend that's a nurse said to make sure to watch her for infection,because that's a risk.Thank you again for all your prayers and support.

Thank you Chelsea Hutchison Foundation!

Friends I have to say I am speechless with emotion.This is Julie and her precious daughter Chelsea who passed away due to something called SUDEP(Sudden,unexplained,death,in Epilepsy Patients.)
This is something that a lot of us seizure parents worry about,those of us that have been actually told of the risks of this.

Julie started a Foundation on her daughters behalf to alert people of the risks of SUDEP and also to help them get seizure dogs,so that the people can have a more independant life.

Everyone was excited when U.P.S showed up today.The Chelsea Hutchison Foundation sent each of our kids an EMFIT monitor.This goes under their beds to alert us if one is having a seizure during their sleep.Since this is a high cause of death among Epilepsy patients it will certainly give us peace of mind.

         Thank you so much for giving us peace of mind Julie and The Chelsea Hutchison Foundation.

The love of God.

We had a wonderful sermon on Sunday about the love of God.When we think of love,especially around Valentine's Day I really don't think we comprehend what true love is really like.Unfortunately what we see in society as love is really not genuine love at all.We see so many marriages end in divorce these days,why? Usually you will hear people say "Well I fell out of love with that person."

What we think of as love is something played out on a television show or movie,that's usually more lust than love or some sappy words in a Hallmark card.Not that Hallmark cards can't be nice,but what God's love is, is AGAPE love a never ending love.He loved us when we hated,despised and rejected him.

1 John 4:9-10

King James Version (KJV)

 In this was manifested the love of God toward us, because that God sent his only begotten Son into the world, that we might live through him.
 Herein is love, not that we loved God, but that he loved us, and sent his Son to be the propitiation for our sins.

Even though we hated and rejected God he loved us enough to send his son to die for us.We can say those words and in a way we've heard them so much that in some ways they have seem to have lost their meaning,but if you think of it this way you can get a better understanding.Think of your precious children your son or your daughter,whom you would lay down your life for.Think of them having to give up their lives so another may live,how tough would that be?
It might be extremely tough,but if that person is grateful and loving for the sacrifice they made it might be more acceptable.
Now think of your son or daughter giving up their life for someone that hates and despises them.You would think how could that person be so ungrateful?
That's AGAPE love that's the love God had for us in sending Jesus to die for us.

John 3:16

King James Version (KJV)

 For God so loved the world, that he gave his only begotten Son, that whosoever believeth in him should not perish, but have everlasting life.

Now here is the second part,one of the harder parts,loving our enemies and one another.

1 John 4:20-21

King James Version (KJV)

 If a man say, I love God, and hateth his brother, he is a liar: for he that loveth not his brother whom he hath seen, how can he love God whom he hath not seen?
 And this commandment have we from him, That he who loveth God love his brother also.

How can we love God with the same mouth that also curses our brother.A person that God created in his own image.

As our pastor said you may think "God give me the strength to love this person," but that person could be thinking the same thing about you.

Romans 12:14-21

King James Version (KJV)

¹⁴Bless them which persecute you: bless, and curse not.
¹⁵Rejoice with them that do rejoice, and weep with them that weep.
¹⁶Be of the same mind one toward another. Mind not high things, but condescend to men of low estate. Be not wise in your own conceits.
¹⁷Recompense to no man evil for evil. Provide things honest in the sight of all men.
¹⁸If it be possible, as much as lieth in you, live peaceably with all men.
¹⁹Dearly beloved, avenge not yourselves, but rather give place unto wrath: for it is written, Vengeance is mine; I will repay, saith the Lord.
²⁰Therefore if thine enemy hunger, feed him; if he thirst, give him drink: for in so doing thou shalt heap coals of fire on his head.
²¹Be not overcome of evil, but overcome evil with good.

Believe me these things I write are a conviction to myself.

I think this is an area we can all struggle with at times.Even Paul struggled: 

Romans 7:14¹⁴For we know that the law is spiritual: but I am carnal, sold under sin. ¹⁵For that which I do I allow not: for what I would, that do I not; but what I hate, that do I. ¹⁶If then I do that which I would not, I consent unto the law that it is good. ¹⁷Now then it is no more I that do it, but sin that dwelleth in me. ¹⁸For I know that in me (that is, in my flesh,) dwelleth no good thing: for to will is present with me; but how to perform that which is good I find not. ¹⁹For the good that I would I do not: but the evil which I would not, that I do. ²⁰Now if I do that I would not, it is no more I that do it, but sin that dwelleth in me. ²¹I find then a law, that, when I would do good, evil is present with me. ²²For I delight in the law of God after the inward man: ²³But I see another law in my members, warring against the law of my mind, and bringing me into captivity to the law of sin which is in my members. ²⁴O wretched man that I am! who shall deliver me from the body of this death? ²⁵I thank God through Jesus Christ our Lord. So then with the mind I myself serve the law of God; but with the flesh the law of sin. 

I am so thankful God's mercies are new every day.I fail and fall so many times and I often get discouraged,but I think those are the times we are trying to do things on our own strength.It's only through God's love,grace and power the we can we get away from our sinful nature and walk more according to his Word.

Finally do you know how The Bible says we can identify ourselves? It's by our love.

John 13:34-36

King James Version (KJV)

³⁴A new commandment I give unto you, That ye love one another; as I have loved you, that ye also love one another.
³⁵By this shall all men know that ye are my disciples, if ye have love one to another.

 

 

By our love towards one another we are showing that we are his disciples.It's certainly eye opening that anytime I'm not showing that genuine love or AGAPE love my light is a little less bright.

 

 

 

Another tough day!

Hello friends,Well yesterday was just another one of those horrible crummy days.It didn't start out too bad.Ariel had told me for the last couple of nights again she had been up at night having pain,but she was able to tolerate it with pain meds.Yesterday I took her to her Ortho in Silverdale to remove her cast.She was very happy to get it off.

On the way home her pain started to intensify.We got home and it got very bad,so I quickly got her to the car and was going to take her to Mary Bridge.As we were driving she started moaning horribly and rocking and crying.I have not seen her have pain like that at all,not even when this first started.

She begged me to just take her to the hospital here.I really wanted to take her to Mary Bridge,since they have all her records and know what's been going on,but I thought well they can always transfer her.

We get to the front desk and they are being way too casual.Here she is screaming and crying in pain and they are just acting like it's no big deal.We get to a room and have a very unfriendly nurse who is going on and on about her breathing too hard,hello lady I 'd like to see you have pain like this and act normal.

A lady doctor came in,who was very nice. I told her the situation with her kidney stones and she ordered her Tordol right away,well these two nurses are just piddling around taking their sweet time.They can't get an i.v. in her and are just being really non chalant.I repeatedly told them this is why I wanted her at Mary Bridge.

Then this male doctor comes in.He and I have had it out before,when he refused to listen to us and spent an hour yanking on my son's arm trying to get it in and when it didn't work as we told him it wouldn't he started flipping out.He comes in and is like "what's going on."Ariel is crying and in pain and can't speak.I told him and he very snottily says "She needs to tell me." I told him she is cognitively impaired.He then saw the lady doctor had come in and so he said "Oh I will let her take care of it." I was thinking good.I didn't want you here anyway!

Finally they gave her some Tordol and Fenegran for nausea.I wish she could take Zofran,but she gets a horrible case of Dyskenesia from it,not only does she flail and do all sorts of weird things,but then it makes her go into seizures as well.Unfortunately we learned this the hard way,when they gave her a mixture of Zofran and Morphine and she had to be taken by ambulance to another hospital.
It took several minutes,but it finally worked.One thing I notice with Tordol is Ariel gets really mean when she's on it.When we were in the hospital for all that time in January she was like that at first with the Tordol,but I think she got used to it and wasn't as nasty.

They did call her wonderful Urologist and he wanted an Ultrasound.The stone had passed through the kidney and was in the Ureter.So here we go again.They also discovered she has a Urinary tract infection.More good news.

Last night from what I understand she was up most of the night in pain.The stone is big enough we should have seen it if it passed.We are straining her urine.She hates being at the hospital,but once she wakes up if she's like that again we are going to have to go back.They may need to do like they did the last time.Flush,give her pain meds around the clock and then fish it out.The last time they only saw one stone on the ct scan,but there were actually 5.I figured I should get a bag packed anyway.

She may have the same exact thing going on now.Please continue to pray for Ariel.She's so tired of hurting and being sick.If you can take a moment to sign her guestbook,write her a note on FB she would love it.Thank you for your prayers and support,God bless,Linn



Daniel & Michael's sitehttp://www3.caringbridge.org/wa/danielmarrero

Ariel's life story videohttp://youtu.be/XBknrihEISY

Ariel's Make A Wish video http://youtu.be/7VbDk4UxexM

Daniel's life story videohttp://youtu.be/kEC1CJCSx2Y

Here is my Facebook profile
http://www.facebook.com/media/set/?set=a.254800924549137.79701.100000576952851&saved#!/

Girls day out!

Hello friends,Well yesterday was a special day out for Ariel and I.She actually had been feeling a bit better and Starlight had generously offered us tickets to a play in Seattle.

The first part of the day we spent at church.It was so nice to see everyone again.We've been gone for a while,especially Ariel,since she had been so sick.

After church we came home,got changed and I asked Ariel where she would like to go to eat for our day out and she chose the Rainforest Cafe.It's such a fun place with the animatronic animals and everything all jungle like,plus they have good food.

We had fun walking around and looking at all the animals and fish tanks.You can see some of it on video here: http://youtu.be/nbXQjrOD-RQ  and here: http://youtu.be/ZCCLdmRNLwM  
Unfortunately I lost my coat that had my car keys and was in quite a panic about it,but thankfully found it at the restaurant.I think the attendant picked it up when we were walking around taking pictures.So after that scare.We gathered our things and headed to the play.

I'm glad we got to the theatre when we did,because the line was wrapping around the building.We got some fairly decent seats.I was a bit bugged by the girl next to me constantly using the light of her cell phone to look at her program through out the whole play.Why not just watch the play? The play itself had some wonderful dancing and singing.They don't let you take any pics.I did have a pic of the marquee,but my phone ate it.The play was great,with the exception of one part.I have found that this particular theatre always seems to add innapropriate things to a totally clean show,so I think we will stick with The Paramount from now on.

Ariel and I had a fun and wonderful day and I had the songs from Oklahoma in my head all night and today.The Surry with the fringe on top,Oh,what a beautiful morning and OOOOKlahoma.I'm so glad she felt good.Today she's not feeling too hot,but atleast she had that one great day.

I also ordered Oklahoma on Netflix,so we can watch it together.

HAPPY BIRTHDAY,NICHOLAS!

Today is my oldest son's birthday,He's such a blessing to us with the way he is always there to help out with his brothers and sisters.


Happy Birthday Nick!

Finally seeing some light at the end of the tunnel.

Well friends I'm happy to report that I'm finally seeing some light at the end of a very long dark tunnel.It may be a small patch of light and it may be for only a few fleeting moments,but it is light none the less.


Ariel has a wonderful pediatric high risk case manager,for complicated kids with many medical needs.She has gone to many battles for us and we feel very blessed to have her.

She got us in with the wonderful Urologist for Monday.His wait list was tremendously long,like 6 months out.I'm praying he can help her resolve these issues she still has going on.We also saw her wonderful Epileptologist yesterday.She just couldn't believe all the incompetence going on.

We had a long discussion on what are our options should she not be able to continue on the Topamax,unfortunately our options are few.Especially with all of Ariel's med allergies.Felbatol is one,we don't want to do that,especially after seeing how it affected Daniel or Sabril.The eye issues with that one bother me.


So she has to do the Citra k 3 times a day to hopefully change the acidity in her body so it doesn't make stones.If that doesn't work,then we will have to cross the bridge of a new med for her.


She also increased her VNS.Right now everytime it goes off she chokes a bit and gags,but I'm sure she will get used to the new setting in time.

Yesterday was the first fairly decent day she's had in a very long time.Things were well enough that Gilbert and I were able to go to the movies.lately we've been like ships that pass in the night.I'm always in the hospital,at the E.R. or in Ariel's room comforting her.It was a nice time.

Today is my oldest son's birthday.We will celebrate with a little party tomorrow.Ariel has a friend coming over and the following day after church.She and I are going to a Broadway play in Seattle ,that is if she's well enough.

This is not my favorite musical,but I thought it would be fun for Ariel and I to have a girls day out.

I want to thank you all for the love and support you've shown to us during this time when Ariel's been so very sick.You will just never know how much a guestbook signature a kind word and e-card or phone call will do to brighten someones spirits.


Ariel has certainly felt loved.I thank you all for that.

God bless,Linn

Just plain sick of being sick!

Hello friends,Well January was a rough month.It started out well,but quickly went down hill.Ariel's been in patient and in the E.R. many times.They did the procedure to remove the kidney stones,but she still continues to be symptomatic.

She has been having episodes of nausea and vomiting and pain every single night.Sometimes pain wakes her from a sound sleep.I keep telling them something is very wrong here.Your body just doesn't do all these things for nothing.Her body is telling us something is wrong.I also am feeling very blown off.

I feel like I have to become a detective myself,because after they do the small little things they just wash their hands of it all.

Last night was the last straw for me as my girl looked absolutely awful.She's so pale with big dark circles under her eyes.She also started having a bunch of seizures last night.

I just want to take a megaphone and yell "someone please listen!"She was actually scared for her physical wellbeing,because she's gotten so sick.

So today I am determined to park by the phone until someone helps or figures out what's going on with my daughter.I am not going to wait until she continues to decline.

Please pray we can figure out what's going on with her soon and that someone will help her.Her regular doctor is out of town on a mission trip for 2 weeks,or I would call him.
Thank you,Linn