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!

Update on Daniel

Hello wonderful Friends and Family,

My phone has been blowing up with your love and support for Ryan and I and of course Daniel.  I am really struggling with the emotional energy to keep repeating the happenings over and over.  So I thought I would come back to this blog so that you can check on Daniel's journey with this new diagnoses.   If you were not aware fill free to look through the past post on how we discovered Daniel's immune system problems almost three years ago.  This is the current stuff that we are dealing with.  Thank you for all your love and prayers we really appreciate it and we are so thankful for such amazing family and friends!!!

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Ryan and I wanted to give a quick update on Daniel. We had a check up a few weeks ago and I went in to discuss the results today(Thursday, July 25th) with his immunologist. The results are not good. His Igg levels continue to be very low and the doctors have now diagnosed him with a disorder called WHIM. Starting next week we will begin a treatment called "Sub-Q Ig therapy". We have two options the first option is to admit him to Phoenix Children's monthly for this treatment. The second option is to do a weekly treatment at home, this would require training and an in home nurse for a time. Whatever option we chose, We will be doing for 12 months before reevaluating his levels again and deciding our next steps. The scariest part is that if this doesn't work the next step would be a bone marrow transplant.

We are very scared and would love for prayers for wisdom as we make some very important and difficult decisions this next week. We also are praying that our insurance will cover these procedures as there are some other options but these are the easiest on Daniel. Lastly, we need prayer for gentle words as we have not told Daniel any of this yet.

As of today, August 1st we went back to PC Dermatology. The appointment was not good. We saw Doctor Hansen, who is the head of dermatology he explained that there are only 25 cases of WHIM in the United States and that it is very unlikely that any treatment will help the warts that Daniel is dealing with. As I'm sure you can guess we are pretty upset about this and are simply praying that Jesus steps in and the doctors are wrong.

Again thanks for all the love and prayers~

Ryan and Angela

Crazy weekend at the Butler's

So as you can see we had a fun filled craziness at the Butler's this weekend.  Thursday night I went to the allergy doctor and had to have an epi shot which was not as bad as I thought it would be.  But it was not fun to say the least!  My allergies have been horrible and the doctor is debating whether I should be having allergy shots on a regular basis or not.

Then on Friday night Dan was riding his scooter, fell and bit through his bottom lip. . .Yup that sent us to the urgent care.  We had to get stitches!  Dan was a champ though he really didn't even cry, just growled at the doctor.  Yes I said GROWLED. . .The doctor said that was a first for her, not for me. . .He seems to be his regular Danimal back to wrestling and jumping around with no problem.  He actually was more upset because he wasn't able to play outside because we had to go to the doctor!

Yes, that was the first of many I'm sure he is my fearless, crazy one!

Yes I'm still here!!

 

So this is my catch up post, we have been having so much fun that I have not had time to blog :( I know so sad. The pictures of the boys that you are looking at and no doubt thinking "Wow arn't those cute kids!"  These were taking on our family vacation to Colorado, in Pagosa Springs.  We stayed at a resort there on Ryan's bosses time share points.  He graciously gave us five day and four nights for one of Ryan's bonuses!  It was wonderful, cold but beautiful all at the same time.

 The boys enjoyed fishing multiple times a day and I got to read a ton!  Yes that was my perfect vacation!!

 When we got home I had a baby shower for my niece that will be coming in January.  Her name is top secret but I can tell you that I am so excited to have a little one around and even better to have a girl.  Bethany is doing well and keeping Jeremy busy with the painting and decorating of the baby girls room.  My family and I will be going to Colorado for Christmas since Beth is not able to travel so I will get to see the room then and maybe if the baby decides to grace us with her presence early I might get to see her then too.  But more likely I will be going back to Colorado in January and helping when the baby comes!  So very excited!! I think that is a good summary of the most important things the last few months.  I will be working on keeping the blog updated better(but don't hold me to it too much:)

Dad's Gone Day 8(last day)

Well tonight will be my finally "Dad's gone" post because my honey will be home in the morning!!!(hopefully) If he makes all of his planes and everything is on time then he will be home tomorrow morning at 10ish. I am so excited I can hardly wait and will probably not sleep at all tonight!

Dad's Gone Day 7

Today's been a good day. We went to work as usual, the boys going to school. When I picked Dan up he was so excited to tell me that he went to the treasure box!! This is a huge deal because that means that he had three excited faces(this is going above and beyond the classroom expectations for the day) this week, that alone should be amazing but he was out of school Tuesday which means that he got three of four days with an excited face this week!!!! He has really been working on it and he was glowing when I picked him up today. His teacher is wonderful she is really working with him and we are seeing some great progress. I am so thankful for the move to Litchfield Elementary!

His teacher even took this adorable picture today during art class, of Daniel having fun at school I know most kids do this all the time but this has not been Daniel most of the year this year. So this brought tears to my eyes when she sent it to me today!
Then we were off to dinner with our close friends, the Sanders. They had us over for dinner so that I didn't have to cook, isn't that amazing! I know they are so thoughtful, the kids played and we were able to socialize as adults(with kids running around and playing of course). Nicole made an amazing dinner of tacos and Darius cleaned up(what a good hubby). We were hanging out Steven's highlight of the night was beating Darius at mariokart on his game system(not sure which one, I don't know things like that). Although my night was really made just getting to hang with these wonderful amazing friends. My highlight of the night was when Tyshawn came running up and hugged and kissed me before leaving, I just love these kiddos!

Thanks Sanders for an amazing night and only one more day and a wake up until my honey is home!!!!!
Love,
Ang

Dad's Gone Day 6

Today was a good day, we are missing our Daddy big time today! Daniel is convinced that his dad is still floating in a plane somewhere and doesn't understand why he won't come down. Steven just seems sad at times. But overall, it was a good day Daniel got an excited face on his chart and Steven got green. I had my bible study for the first night tonight and although the attendances was lower then expected I am so excited about what God had planned for this semester. Other then that it was a fairly uneventful day, tomorrow we are going to the Sanders for dinner and the boys can't wait! Frankly I can't either, really looking forward to some time with friends. My mom will be on her way to California, thus leaving me to fend for myself Saturday and Sunday until we pick Ryan up from the airport. Hopefully in time to see the Steelers win the Superbowl!!

I miss you tons honey can't wait for you to be home,
Love
Ang