Saturday, December 18, 2010

Update on Dan

I spoke with the doctor yesterday and she had the biopsy results. It is confirmed that Daniel has Psoriasis. She believes that this could be a side effect of the strep or it could be the chronic form. Psoriasis is an immune disease that attacks the skin cells. The way she described it to me yesterday, instead of the nervous and brain telling the skin to heal it overloads the skin with healing messages and therefore the skin cells multiple rapidly which results in a rash or sores in the area that needed healing. We will not be able to know if this is a side affect or the chronic disease without more infections.

Unfortunately, Ryan and I are fearing that this the chronic disease because of all the rashes and skin problems that Daniel has dealt with since he was a baby. But for now we are treating with a cream and we are hoping that within 6 months or so that the rash will be gone for good.

We are still working with the immunologist because they are still not sure why his IgG levels were low. But for now we will praise God for his answers and continue to pray for healing.

Thank you for your prayers and for your support
Ang

Wednesday, December 15, 2010

To My Distant Family

Just a quick note, I know that due to Daniel's illness we have had more people looking at my blog. Which is love! My father called tonight and informed me that our family(through faith, but close enough to be family) in Israel (and other middle eastern areas, that I'm not sure what the names are) have been checking my blog. I know that some of you don't speak or read English so I have attached a translator on the right hand side. You simply put the language you want my blog to be in and done! I am so thankful for each and everyone of you and your prayers, I hope this makes things easier to keep up with Dan and our family!

Love you all,
Ang

Tuesday, December 14, 2010

Update(kinda) on Dan

Let me begin by thanking each and everyone of you for praying today. The love and support that we have felt today has been overwhelming!

We began our morning with Dr. Jacobson, chief of peds for PCH. He was very helpful, and even called me at home this afternoon. We will be seeing him from now on when it comes to Daniel. He will be helping coordinate the PCH derm, and the immunologist.

We then went on to the dermatology department, and for the sake of the Dr I will not be mentioning her name. She had horrible bed side manner and we will not be going back to her anytime in the near future!

She believes that Daniel has psoriasis. She did not think a biopsy was necessary but I pushed reminding her that we were only there because two other doctors believed this was necessary. They burritoed him up and took the biopsy from his back, it was horrible. I have been on the phone with the original dermatologist and Dr. Jacobson this afternoon. . .Both have assured me that doing the biopsy was the right thing to do and the other dermatologist does not believe its psoriasis.

So to sum things up we have no more answers, I'm frustrated. We will be trying the treatment that she gave for the psoriasis on the chance that she is right and I am just overreacting, which seemed to be the theme today.

But for now we are going to go back to the immunologist that I love and get his advice and continue to talk with Dr. Jacobson who gave me his direct line today and also offered to have me call him anytime, even if it is just to get medical advice. Thank God for him today.

I'm hoping that once I calm down this was just God's way of communicating that things are not as bad as we have thought they were, and not just that we had a doctor who didn't care.

Thanks for praying,
there will not be much to update since I'm not sure where to go from here I will keep updates coming as I get them.
Ang

Sunday, December 12, 2010

Fun Filled Weekend!

So this was a typical Christmas crazy weekend. Friday Ryan and I went out for his work Christmas party, Outback Steak House! Awesome, plus a date, those are far and few between lately. We had an awesome time, we even played a game about Christmas songs it was so fun, I know I'm a Christmas dork.


Then Saturday we had Steven's last baseball games (yes a double header!), while he was there I had a Christmas party with my SPOT staff! Which was of so fun, spending some time with my girls away from the church was awesome. Then we went to Glendale Glitters! This is where it gets interesting. . .
We have no money so we were just walking around enjoying the lights and crowds(enter some sarcasm in here) when a man approached the boys asking if they like silly bands. For those that don't know this is the rubber bands that we used to wear to our elbow during the 80's only know they come in all kinds of shapes, really kinda fun. Well of course my boys love them, he had free silly bands that he was giving out. We talked for a minute, the man was very pleasant. He then said "You know what I think you need this" He handed us this bag and said "There are some really good things in here, do not just throw it away make sure you look at everything." We said ok and went on our way.
As we were walking Dan saw this stand that had animal crackers I was trying to explain that you have to buy them when a lady said "No their free, go get him some" (nothing like a stranger to help you parent right. . .) Anyways I walk up to the stand, just to get some crackers and the guy says did you enter our drawing, I said "No, but I don't have money" He says "Good its free" So I took a ticket and Dan started eating. In no less then 3 minutes he draws the ticket and it was mine!! So I won this basket of goodies, they didn't even take my name or email to bug me later. I'm still not even sure what they were selling but I got a free basket of goodies!
So we head home and begin looking in the bag the guy gave us and there are 6 tickets to the celebrity baseball game, 2 tickets to a spring training game and 2 tickets to the Arizona Broadway Theatre!!! Pretty awesome huh~! Ya we thought so.

Ryan making fun of the fact that I was taking pictures to blog about this! So he earned his way into the post.
Sunday morning was very relaxing, we did nothing. But Santa did send the boys a message so we played it for them. Dan was in awe and Steven(who we could call doubting Steven, lately) was very excited!

Here's Dan checking to see if Steven believes and is into it! Very cute! The best is yet to come so stay with me I know this is a novel rather then a blog!


So lately Daniel has been pretty sick, but seems to not want to tell us what hurts or things like that. It always amazes me when kids pick up on the fact that they are stressing their mom out. But here recently his bear(recently named Caleb after Caleb A. in Ryan's small group, Dan said he just wanted to be able to hug Caleb all the time) Has been getting sick and telling us what is wrong with Dan. So Dan was very upset last week when his Caleb bear got a big hole in his face. So today we took Caleb to the Bear hospital and they fixed him right up. Dan was very cute, he was talking to the bear the whole time and told me when the lady was fixing him "Mommy I need to stay where he can see me so that he knows I'm still here." So thankful that God has given Dan this friend to help him express himself.












I think this weekend can only be summed up as God's provision. I know its silly and the free stuff is not anything big, but I truly believe God is just reminding us that he is taking care of us and he is in control.

Hope you weekend was a fun filled as mine!
Ang

Saturday, December 11, 2010

Heather's Bridal Shower

I know it is now a week later, there has just been to much to do this week. I throw my soon to be sister-in-law a bridal shower last weekend. My mother-in-law, Cathy and Ryan's cousin, Angela were in on it too. We had a good time, wonderful food and great company!
This is a picture of our party favors I made the tag and then in the bag there were chocolate kisses, hugs and dove candies. Angela C made the name cards, they were sooooo cute!



We had french toast, an egg bake and hash browns for breakfast.
Angela C made this beautiful fruit display(don't know what else to call it other then a monster!)
Grandma Margret got in on the cooking too and helped make fruit tarts and breads! The breads were amazing!!!



We had three different center pieces and three different tables.

I am looking forward to Heather joining the family! I know Cathy and I will love having another girl to hang out with! Thanks for all the help Cathy and Angela.

Thursday, December 9, 2010

Family and Friends Card and Tags


Well here is my card of the night! I have been dying to try and put together a card with the singing carolers! Not super pleased with the way it came out but I do like the tag!
Made some gifts for the ladies in my front office tonight these are the tags that will be accompanying them. Santa's coat and beard are sparkly white, but Ryan was making fun of me taking so many pictures so I gave up on trying to get the sparkles in.


Love the saying! Makes me look forward to my family coming in a week and a half, but I'm not really counting. . .:)
Thanks for visiting and checking out my stuff, this is really just my down time lately, but I am lovin' it!
Ang

Tuesday, December 7, 2010

Update on Dan the Man

I know that there are lots praying today so I wanted to let you know a quick update on how Dan's Immunology appointment went today. First I should begin by telling you that God has provided above and beyond our expectations this week, God is Good all the Time!

Well there is very little that is new Dr. Casper does not believe he has an immune disorder, BUT he has no explanation for the infection or the rash. He did do an allergy test on Dan today, which was horrible! They "poked" Dan 35 times to discover that he has no allergies and none of this can be explained by allergies.

He is ordering two more blood test and said that if we did not already have an appointment with PCH derm he would be sending us there. He also was going to have a skin biopsy, so we are headed to Phoenix Children's Hospital December 14th beginning at 8:00am, the test will begin at 9:30.

Please continue to pray for God's provision and that Ryan and I would have wisdom in the test that we allow and the test that we would prefer to avoid.

Other then a sore back for the 35 shoots today Dan is doing just fine and is happy to be going to the store after school for silly bands because he did good with his test.

Thank you for your prayers and support, your love has been overwhelming!

Love,
Ryan and Ang

Sunday, December 5, 2010

My Cards

I have been spending my free time making cards. This seems to be a very relaxing time for me and some time that I can forget about the other things going on in my life.

This is a card that I made for my soon to be sister-in-law, her shower is today and I had so much fun making it!

This is the Christmas card that I have been working on. I think this will be what I send out or give out, since I'm not so good at sending Christmas cards.
My grandmother recently stopped driving so I offered to make her Christmas cards this year, these are what she want, the nativity with the Scottish ribbon behind. She thought this was a perfect display of her personality. I have 20 done, she wanted 50(we'll see if that happens)

This was just me playing, coloring really, still not done yet but in the works. Hope you enjoy I know that some of you have been asking to see what I have been doing. Gotta go to my bridal shower, more to come tonight of the shower!

Don't forget, Lili of the Valley Inspiration blog are running the 12 days of Christmas stamp give-away .. ..
Ang

Wednesday, December 1, 2010

Daniel

I hope this post finds you well, although I think this is probably against everything I believe in I am going to update you on the status of Daniel and his health problems through my blog. Anyone who is reading this knows that I would so rather be speaking to each and every one of you personally. I am finding that keeping all of my family and friends updated on the progress(or lack there of) is emotionally exhausting and I cannot continue to do it. So I thought this would be a good way for the information to get out with some emotional relief to me.

About 11 weeks ago we had Daniel seen by an ER doctor with the thought that he had a staff infection. He was treated with an antibiotic and sent home. On the following Monday the rash was not better, and there were bumps behind his ear and back that looked like chicken pox. So we went to our pediatrician who that that although it might be a staff infection it might be a yeast infection too.
He then prescribed some cream and told us that if it was not better in a week come back. The following Monday it was not better so we went back. This time we saw our current doctor, Altamira and he did a culture finding that it was not a staff infection at all it was strep. He prescribed another antibiotic and a new cream and sent us on our way. This time the rash seemed to get better, the bumps looked better and we thought it was working. We went 10 days before we had an ear infection, which sent us to the ENT and another antibiotic round. During the next two weeks he began at his new school and was doing wonderful except he began to have accidents. When it first started we thought "It's a new school, another transition. . ." After three weeks of consistent accidents both at home and at school we went back to the doctor.
This time Dr. Altamira, began to be really concerned when the strep test came back positive again. He began questioning me about my family history and "Any immune disorders in the family history?" Of course I said yes, that my sister had died of Histiocytosis. He was immediately more worried, he explained that there could be two things happening, he could have a disorder that is resistant to penicillin or he could have an immune disorder. He began by starting us on another antibiotic that was not a penicillin base, and had us come back in two weeks.
When we went back the rash again looked better but was not gone, he referred us to a dermatologist and ordered a full run up of blood work with a focus on his immune system. This brings us to Wednesday last week. We took Daniel to get his blood drawn, which all in all went really good. He joked with the lady about sucking his blood with a silly straw and didn't even cry until she tried to tape up his arm! The doctor called last night, yes the doctor himself not his nurse and informed us that there was some concern with the blood work, his IgG levels are low. With all of my research this would not be a huge problem if he did not have an infection that was persisting. Either way he asked when we were going to see the dermatologist and when he found out that was not for another two weeks he made some calls and we got in today.



The dermatologist was wonderful. I should begin by saying she does not think it is Histiocytosis and gave us a cream. She did however refer us to Phoenix Children's Hospital for a skin biopsy. So now to the question you have all been thinking, we are scared which does not even seem to communicate our feeling but I am suppose to use words here not a recording. We are confused as to why Daniel acts so normal yet could be very sick and we are exhausted, we just need some answers.

So to the next question, "How can you help?" Just pray I am going to list the dates and times of the doctors appointments in a minute, At this point we are just praying that God will heal and protect our baby, and guide our decisions and the doctors decision to make this process as quick and painless as possible.

During my quiet times I have been referring to the verse

"Cast all your anxiety on him because he cares for you" 1 peter 5:7

"However, the Lord your God. . .will turn the curse into a blessing for you, because the Lord your God loves you." Deut 23:5

Please remember that we love you and we would love to have the emotional energy to call and talk with each one of you individually but that is not physically or emotionally possible at this point. I hope and pray that this will change soon and all our worries will be for nothing.

The upcoming appointments/pray times are:
Tuesday, December 7, 2010 @ 7:00am with the Immunologist
Tuesday, December 14, 2010 @ 8:00am with the Chief of Peds for Phx Children's
Tuesday, December 14, 2010@9:30am with the Dermatologist for the skin biopsy

With all our love,
Ryan and Angela