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