Wednesday, December 1, 2010


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

1 comment:

  1. although i heard this all today, i still find myself with big giant tears in my eyes.

    i am so sorry that you guys are having to go through this and i am praying that you find your answers within the next few weeks, so that it brings you peace, no matter what the answer is.

    i love those pictures of your sweet, sweet baby boy!

    love you guys!


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