Good news and more prayer request.

Today we had a busy day we saw the allergy doctor for Steven, the dentist for all three boys and of course it was Christmas tree day!!!

We had a great dental visit with no cavities for any boys!!!  This is a huge step for Dan who has been having teeth problems because of his vomiting and medicine.

We had a lovely time decorating our new tree, what a blessing from my Grandmother!  This years theme is blue, silver and white...we're dreaming of a white Christmas!!(never gonna happen but we can pretend)

Our last part of our day brings me to tears...we have been praying for special approval for a new treatment for Dan.  We have been really quiet about it because it was not very likely to come through, and it didn't.  We would ask that you pray with us and ask for Gods hand on the doctor(who is pushing for this new treatment) and for us as we wait.

We are always humbled by the love and prayers that we know God is hearing! Thank you for your love and support!

http://www.youcaring.com/medical-fundraiser/dollars-for-dan-/213786#.VEAx-CQIWKo.mailto

Sad Days . . .

 

 

I wanted to make you all aware of the medical stuff going on in my house this last week.  I am pretty much a mess to talk about it so I thought if I blogged it would be easiest on me.

Daniel had his six month count check last week and it came back very low.  This means that he has little to no antibodies fighting infection in his body.  He will be going back on weekly treatment to infuse his body with antibodies.  This will cause him to have sever head aches, be sick to his stomach and overall more sleepy.  Our hope is this treatment will allow him to continue in the general population at school.

Danie has also been struggling with some joint problems which we will be doing some further tests to rule out other major illnesses.  

 

We have had lots of questions on how you can help:

Prayers:

1. For the treatment to be as easy as three injections a week can be.

2. Daniel's body response and his counts come up, allowing him to stay active and involved in regular activities like school, church and sports.

3. For wisdom for the doctors, with the tests that are to come.

If you are still interested in helping Ryan's sweet cousin Kaylee has set up a site for Daniel.  Is not like us to ask for help, but she was amazing and set this up without our knowledge.  We are truly overwhelmed at the love and support of our family and friends.

http://www.youcaring.com/medical-fundraiser/dollars-for-dan-/213786#.VEAx-CQIWKo.mailto




We fully believe that God is watching over Daniel and we will see His goodness through this struggle.

Ang

Big prayers this week!

We have had a very full appointment filled summer!  Daniel has been working hard with his Vision Therapist two times a week.  We have now corrected all of our teeth problems and are working towards keeping our teeth on a heathly path.

This week we have some big prayers:  first Daniel had a count check today and we are waiting for the results to decide whether he choose be back on treatment or not.  Second, Daniel's migraines have been getting worse and we have a CT scan this coming Thursday to rule out any other possible problems.  

We have seen God's provision in so many ways and we are confident that we will continue to see God working!  We are praying for complete healing, we know that healing alittle at a time is still God working!!

Thank you for all the thoughts, meals, money and most of all continuous prayers!  "We know the plans God has for Daniel, plans to prosper him and not to harm him. Plans to give Daniel a great future!"  

Ryan and Angela

Prayers for Dan

Many have been texting, calling and asking how to pray for Daniel's recent struggles.  Although God answered our prayers and Daniel is off treatment we are not out of the woods.  Daniel was taken off treatment for two reasons, one his body was reacting negatively to the treatment and the doctor thought he needed a break.  And two his counts were slightly higher(which we are praising God for everyday)!  All that said we have had some other stuff to deal with while I am home this summer.  One of which was some vision problems that Daniel has been having.  We saw a specialist and Daniel was diagnosed with two vision disorders.  Our biggest concern is that Daniel's eye sight has deteriorated from a .75 to 1.75 in less then nine months.  The doctors are recommending a very special therapy that will help train Daniel's eyes.  The next concern is the cost.  Of course this being a special treatment the cost is outrageous and  insurance doesn't cover it.  So what can you pray for?  

We are looking into all of our options and we are praying for guidance and wisdom.  In the long term God will have to provide financially because the cost does not work out on paper.  We are confident that God will open doors and provide where he sees fit.  Until then please just pray that we connect with the right professionals to make this happen.

Thanks for all your prayers and love they are being felt!

Update on Danimal!

Im sorry for the lack of posts, Daniel has had three really rough weeks in a row.  Lots of head aches and throwing up...and some trouble with his infusion sites.  We go in for the panel checkup with   the doctor in two weeks, I don't have the date yet but I will post when I know more.  For now we could use some specific prayers:

1. Ryan had been really sick this week and we have been trying to keep Daniel as healthy as possible, but he has a bit of a cough.  Pray that it does not turn into a respiratory infection!

2. Pray that his blood test will come back showing the treatments are having a positive affect on his Igg levels.  And ultimately, that his body fixes itself.

3. Pray that if the test come back positive Ryan and I have the wisdom to know how to proceed.  The choice will be continue with treatment because they are working or take him off and hope that his body has made the necessary adjustments.

We know that God is in control and we are praying that God uses this to grow us and Daniel to be better examples of how his people deal with struggles.

Thank you for your prayers,

Ryan and Angela

Making Progress but We need Your Help!!

God is so Good!! Every time we are stuck and struggling whether emotionally, financially, or physically God steps in and provides.  Daniel is still struggling both with his treatments and at school, I know I haven't written about the school stuff to much.  But mostly because we have been struggling so much with everything that I can't really bring myself to talk about it without being overwhelmed with sadness, fear and frusteration!  However, with all of that said, God has provided and continues to provide!!!

As we move forward, we need to do some things differently to be able to provide for Daniel's medical bills.  Although, God has provided and we are surviving. . .We need to be earning more money to pay for the bills that are growing daily.  I have had many people ask over the last year "How can I help?"  Well, if you are looking to help here is your opportunity!  I am relaunching my MaryKay business!  My MaryKay business has taken a back seat to all the craziness that has been happening, however there is no doubt that if I could be bringing in $500- $1000 more a month we would be able to pay Daniel's medical bills without a problem.  So I am looking for five women(or men who want to volunteer their wives :) to let me come to your house and pamper you with a facial!!  After you have experienced these products that I love, I am asking that you host an online party within the next three months.  This party would simply be an open party online(Facebook) for a week, you earn rewards by simply asking your friends to look at buying some make up and talking up your experience working with me.  I am asking for these parties to be hosted in the next three months, because I am kinda doing a trial.  If I am able to work this business for the next three months and earn the money we need I will continue to push my business and grow my business.  If this is not a method that helps with our medical bills, the way I am hoping then we may be looking at other options.

I have been using MaryKay make-up since I was 16 years old.  I have extreme allergies and these products are my lifeline when my allergies are in an uproar!  There is something for everyone, the teenager that is just beginning to explore make-up, the women who simply wants a clear beautiful look and the age fighting products are super amazing(maybe the best I have ever seen or used)!
If you are at all interested please check out my website or give me a call about setting up your personal facial.

http://www.marykay.com/angbutler


Thanks for all your prayers, We will be seeing the Doctor in May to see how the treatments have been helping Daniel and I will be sure to keep the blog up to date.
Ang

Praising our Great Healer!!!

I have not posted lately because things have been pretty rough.  Although, there are some struggles that we are still not ready to share.  God has known our needs and has provided.  We have recieved some amazing financial gifts that only God could have known we needed(we're not great at asking for help).  But we have seen very little encouragement in terms of how Dan is responding to treatment, wart treatment or otherwise.

But last weekend Daniel told me "look Mommy my warts are going away." I smiled and tried to change the subject, because I didn't see any change.  But tonight as we were getting ready to pray at dinner, Ryan took Daniel's hand and started frantically searching his hands.  The warts are gone!!!  Yes gone!! There are some scars from the warts but there are no more warts!  We sat and cried and praised our Lord for this healing!!! Ryan and I have been so discouraged lately that God must have known we needed some encouragement in this area.

Thank you for your continued prayers we have some big things coming this week and could really use some prayers for God to intervene!

Angela 

Update on the new treatment

Many have asked and so here is a short update on Dan and how the new treatment is going.  Sorry if we have not updated more often...there's just not a lot of positive to say.

The new treatment requires the three shots which has caused Dan to have quiet a bit of soreness in his belly.  And although he has not thrown up in the last two weeks from head aches(which is a win),  he has been extremely moody and emotional.  He seems to be reacting to this treatment like he is on a steroid, with crazy mood swings!

The treatment does go faster which seems to be a good thing for Daniel but overall we are not seeing a ton of changes in his head aches and the general side affects.

We are going to keep with it for a few more treatments and hope for the best!  

Thank you for your continued prayers

Ryan and Angela 

New treatment!!!

We are starting a new treatment tonight!  Daniel has been really struggling with major headaches that have been causing vomiting and just mood altering in general.  Our worst days tend to be Sunday afternoons and Mondays.  Monday nights especially, by the time he gets home from school on Monday night he's just done and typically just lays on the couch if not throwing up in bed.  This of course is all weird to the doctors because they have no idea why he's getting sick three days after his treatment.  

So when the decision was made to change the treatment we had no idea that the two treatments were so different!  Tuesday the pharmacy called to tell us that we were going to have to start doing three infusion sites instead of one.  That means three injections rather than one!  As any Mom might I started freaking out trying to think of how I was going to explain to my six-year-old that now instead of one poke he was going to get three every single week.  In addition, to the three injections we now have to have a nurse come to the house to watch this treatment because there's a higher chance that he would react with a reaction of shock with this medicine. 

 So like any conscientious mother I called the doctor and became a nag!  Apparently, I had not asked enough questions when we decided to change the medicine I had no idea the risk factors with changing the brand of the medicine versus the risk factors of keeping the same medicine and dealing with the sickness.  Thankfully my doctor is absolutely amazing!! God has reminded me time and time again that he is watching over Daniel and all of us by providing people in our path who really do care for us and especially for Dan!

So tonight we used the "magic lotion" this is a cream that is suppose to numb the skin before the injection.  And although Dan was not happy about getting poked three times he came through like a champ!  The nurse was amazed at what a good system we had down.  Some of the positive things of this new brand is that it will infuse in a little over an hour!!! Also, because he is getting the medicine in three spots he may not get as much swelling in his belly.  So tonight went well!  God is good and we will keep praying that this new treatment works better!  Thanks for your prayers, they are felt and we feel very loved!

Ryan and Angela

Dan

Sorry for not posting for a while.  I would have said no news is good news and we were blessed with my family in town for the last two weeks, although some of that is true...health doesn't take a Christmas vacation.  Overall, Daniel did pretty good the last few weeks.  We have had two different infusions not go well:  one did not absorb and we had to start a new line and the second took over four hours.  But we are learning that this seems to happen every few times...so rather then treating it like a crisis were trying to be happy we are still doing treatments at home and not at the hospital!

Last week, we had another hiccup Daniel's infusion site(the one that took over four hours got infected).  So we are currently treating that with antibiotics and hoping that the infection goes away soon.

Today was especially hard for Dan Mondays in general are difficult he has more head aches and tends to have the most reaction to his treatment on Sunday afternoon into Monday.  But today he actually crawled up into my lap and laid there for over an hour!!!  We did all the normal meds and basically sent him to bed.  He wanted to sleep with Steven and Steven let him, but Steven told him remember Daniel just say your memory verse Joshua 1:9 be strong and courageous and you will feel better!  We are so blessed to have boys who love God and each other so much!!!

Tomorrow Dan has an appointment with Pheonix Children's for his wart treatment please pray, this treatment is not going well and we are not sure what the next steps are in this process.

Thank you for all the love, prayers and support,  God is good and we are confident that we will see his goodness through this situation!

Ryan and Angela 

He knows what He's doing...

This week we have had a really rough time because of an allergic reaction Dan had, he has been on prednisone aka the devil drug!!! Today Dan cried for two and a half hours.  After the two hour cry we went to Cabalas and he was back to his happy self. Tonight in the bath Dan was singing a veggie tales song that brought tears to my eyes: "The Lord has given this land to us, no need to fuss, He knows what's He's doing!  The Lord is with us and He will take care of us, He knows what He's doing..." #GodissoGood #Godwilltakecareofus

Rough night!

Well we did something new tonight and failed miserably!! We started Daniel's treatment and then Ryan took Daniel on a Daddy/ Daniel night.  We attached his IV to his belly and put his pump in a bag and off he went.  Although, Daniel loved his yogurtini, his medican seemed to not go in at all.  In fact the treatment took over four hours tonight!  We started a new line hoping something was wrong with the IV.  Needless to say we will be calling the doctor tomorrow, this is probably really bad news.  The last time his treatment was not absorbing the doctors told us that we would have to do a double infusion(which means two pokes) or a whole new treatment which means hospitalization.  Please pray for wisdom as we move forward with these important decisions

 

Update on Dan the Man

We have been having some hard times with Dan and his treatments.  Two weeks ago Dan's treatment took over three hours and last week his medicine started leaking out the site!  Yes, it is always an eventful time at the Butler's.  So yesterday we had another treatment that was supervised by the nurse.  The doctor is concerned that his body is not obsorbing the medicine correctly.  So last night we had to give him his treatment in his stomach.  We are going to try changing sites from his legs to his stomach and rotate occasionally to see if this helps.  If it doesn't we will have to do two infusion sites weekly, which means two pokes:(. 

Thank you for your prayers and all the love and support!  We feel very blessed!  God is Good and we know he is holding Dan in his arms!!!

Angela

Treatment #2

Tonight we did another treatment on Dan.  Tonight was very hard.  Dan fought us a bit saying things like "why do I have to do this?"  "I don't want to get poked!"  He was crying and eventually Ryan had to hold his hands so I could give the shot.  It basically sucked...there's just no other words for it.  He settled down once the medication started, but I had to walk away.  I lost it, this is the hardest thing I've ever had to.

We also spoke to the doctor this week we are watching Dan very closely if his reaction continues to get worse the first option would be to change the brand of medication.  The second option would be to do his treatments in the hospital once a month which is definitely not a good option for Dan.

Please be in prayer this week that Dan doesn't have anymore reactions and that his body accepts this treatment.

Your phone calls, visits, text messages and prayers have been overwhelming!  Thank you, we are expecting God to show up in a big way and we know that God will use this for his glory!

Ang

Rough Days

Daniel has had several rough days...he has had migraines for several days and has been throwing up.  He came home today from school and said his eyes were shaking.  

We need prayers!  We are suppose to do another treatment on Thursday and these problems will only get worse.  Please keep little Dan in your prayers!

1st Treatment at Home Tonight

Tonight we did Dan's first treatment at home.  Or maybe I should say that I did Dan's first treatment at home. . .Tonight was a really big deal for me.  Our nurse sat with me and walked me through each step by step(and yes I took detailed notes, no jokes allowed!)  This was super hard for me, until last week I had never even been in the room when my boy had been "poked" with a needle.  I normally let the nurses be the bad guys and I come in and rescues my babies from the big bad nurses.  Tonight I was the one doing the poking. . .it was hard!

But all things considered we did it and Dan did awesome!  Dan and I joked about this being his medicine boom box.  Doing the treatment at home where he can go to bed as soon as its over which was much easier then last week.  I will keep things updated as the week continues.

We are praying for no new side affects this week.  One of the advantages of him going to bed right away is that the huge bump on his leg will hopefully go down before he wakes up and needs to go to school.  But the other side affect that was very hard for Dan was the head aches that followed the two days after the treatment.  If these are the only side affects that we have we are very blessed!  Please keep praying, your prayers are being felt and answered!

Thanks for all your prayers and support,
Ryan and Angela

Daniel's Treatment Today

Today was Daniel's first Infusion treatment and he was a champ!!  We started our morning getting Steven off to school and taking Josh to the baby sitter's.

When we arrived at the doctor's office we spoke to the doctor about a rash that Daniel has developed from the wart treatment that he has been having.  We then met our nurse who will be working with us to get us trained to do the infusions in our home starting next week.

 The nurse started the treatment and Daniel looked at her and said "Wow, I didn't even feel that!"  He then laid back and played with his toys and watched movies for the next two and a half hours.

 Once the treatment was started we went and got Steven from school, we knew that he would be super worried about his brother and we wanted him to see that he was just fine.  They sat and played a football game for about 45 minutes before we sent Steven back to school.

 One of the things the nurse brought was a monkey that she showed Daniel everything that she was doing to him on the monkey.  And then gave Daniel a book on infusion treatment that was written in kid terms and a journal for his monkey to "record the monkey's feelings."  This was such a blessing today because Daniel did not express very much of "his" emotions but the monkey had all kinds of emotions that he wanted to talk about.  Daniel's monkey has now gotten three infusions since we have been home tonight and I was informed that he is feeling much better and the medicine must be working.

 The one struggle that we had today, which was a very minor one at that, was that Daniel will have to take Benadryl at the beginning and end of each infusion.  Which of course makes him very sleepy but as most of you know Daniel does not slow down for anything really. . .

So the doctors nurse was a huge help, she brought in Wreck-It Ralph, which is one of Dan's favorites for him to watch.  He was just sleepy enough that he laid down and watch it from beginning to end and loved it!  This not only helped pass the time but also helped him calm down a bit.  We are probably going to have to invested in this movie before next week because it was a huge help!

After the doctor we went home and laid down some more, which he was not super happy about but did pretty well for a time.

He then decided that he needed to have a battle!  I had talked to Daniel about the need to rest his leg, where the medicine was still absorbing in his body(it looked totally gross like he had a softball sticking out of his leg) and that he needed to do something that was calm.

So of course it made perfect sense to him that he should sit and put a battle together on the coffee table. I was then informed that this was totally fun to do without Josh around because he didn't have to worry about the little parts being eaten by his brother.

As we were driving home from getting Josh from the sitters the song "Whom Shall I Fear(God of Angel Armies) by Burning Lights came on the radio.  Daniel was singing his little heart out and I got a short video of him before he noticed I was recording and wouldn't let me record further.  I was crying my eyes out by the time we got home.  From the mouths of babes. . .

The song says:

I know who goes before me,

I know who stands behind,

The God of Angel Armies is always by my side.

The one who reigns forever

He is a friend of mine

The God of Angel Armies is always by my side

So whom shall I fear. . .

The God of Angel Armies was definitely beside Daniel today.  His presences was felt and our prayers were definitely answered today!! The treatment could not have gone more prefect.  As of now Daniel has not had a single side affect that the doctors talked to us about, the doctor even thought this was odd.  But we of course know that we serve a Big God who loves us and we know that he was protecting Daniel today in so many ways!  The love and support that we have felt today from the text messages starting early this morning, the meal brought to our house for dinner(and many others offers to do so), to the friends dropping by to encourage us and Daniel is overwhelming.  We are so thankful for our family and friends who love us so much to show us this love in such tangible ways on this hard day.  We know that our God is bigger then this disease and we look forward to the doctors not being able to explain the God miracles that we believe will happen in and through these coming months.  Thank you for your prayers and support!  

God be with you.

Ang and Ryan

Prayers Answered!!!

Today we had a very good day.  God answered several of our prayers!!!

1. Daniel was approved for infusion treatment, and it is covered 100% by insurance!!!

2. Daniel will be starting his treatment this next Tuesday at 8:00am.

3. We also told both Steven and Daniel tonight, we did not tell them specifics or as detailed as possible. We just talked about how Daniel was sick and the doctors are working to help him get better.  And this medicine may take awhile to help him.

Steven, was very concerned and asked a lot of hard questions.  We talked to Steven separately so that Daniel did not overhear these questions and get more worried then necessary.  This was super hard for me, it was like I was sitting in my kitchen as an eight year old again listening to my Dad tell me "Don't worry until I tell you its time to worry."  I am going to chose to look at this as a blessing that I have been the sibling with a chronically ill sibling at home, and hopefully I can help Steven with some of the things that I know I struggled with as a child myself.

Daniel on the other hand was very cute!  He asked if the needle was going to be like the blood sucking needles, "because that one doesn't hurt that bad, Mommy."  He then asked if we would have to go to the hospital, when I told him that we were going to Dr. Casper's office, his response was "Good I like him."  And then in a very matter of fact way he said "Ok, can I go outside and play now?"

God is so Good!!! I'm sure that Daniel will have more questions and we will have more hard conversations but for tonight God helped us to speak to our baby in a way that he understood and did not seem to be over concerned with.

Thank you for your prayers, They were felt and obviously heard!

Love,
Ryan and Angela

Update on Daniel

Today I heard from the new pharmacy.  They are working on getting authorization for the treatment, hopefully this next week.

We have been getting the run around from all kinds of different people.  However, we have had some angels sent from God.

Kathy is Daniel's advocate, or she was from the first speciality pharmacy.  When they denied our claim with them, she was suppose to be done with us.  However, she is the only one who has helped me this past week, she has talked to me and listened and given advice. . .Even though she is not being paid.  I am thankful for her wonderful help.

Michelle is a lovely lady that I spent most of my time yesterday speaking with.  She was one of the first (other then Kathy above)  who truly listened to me.  She is currently advocating for Daniel to get a case worker with the insurance company this would be huge!! If we were approved we would have one contact at the insurance and an advocate within the insurance company.

I am constantly having wonderful people asking what they can specifically be praying for:  So this week we are praying that the insurance will approve Daniel's treatment, quickly.  We are also praying for the case manager to be approved as well.  But the biggest prayer we are praying for right now, we have still not told Daniel.  Both Ryan and I are broken hearted about this and it is pretty emotional just to think about talking to Daniel.  Please pray for the words to help Daniel understand, and to help Ryan and I speak loving and comforting words.

Thank you for your prayers
Angela and Ryan

Prayers for Daniel

We have been really struggling with getting Daniel's treatment going.  Today I went rounds and found out that per the insurance there has been no approval.  I have been going circles with the "special pharmacy," the doctor and now the insurance.  We have another appointment with the PCH Dermatology on Tuesday and the plan is to talk to the supervisor and then sit at the doctors office until we get something accomplished if you could please pray on Tuesday morning/afternoon for some help with getting this process going.  We are at a huge loss as to what to do next.  We just need our boy to get better!