July 24th, 2004

Dillons appointment went well yesterday. His hemoglobin is holding steady at 13.9, it did not drop! He has two appointments next week and we are still waiting on some more test results, but things are looking good.
His new appointment with the neurosurgeon is on 8/16 and if he continues to do well he will have his 3d CT scan before then.
I also wanted to take a minute to thank everyone for their thoughts and prayers, everyone has been so supportive and it means more than you know to us!

July 22nd, 2004

We are all home! Dillon was seen by several different Dr’s over the past few days so I will start with the neurosurgeon. The neurosurgeon was great, he came to the hospital while he was on vacation to come check out our little Dillon! Based on appearance and feeling his head, he believes that two sutures are prematurely fused- the coronal and the metopic. He wants to wait a couple of weeks for the CT scan to verify because the radiation is not good for Dillons anemia and because he wants the scan to be done closer to the surgery time. He will also be referring us to a craniofacial plastic surgeon who will be in the surgery room as well.
As far as the hemoglobin and red blood cell concerns, the hematologist believes that it may have been cause by ABO incompatibility ( I am O- and he is A-), That basically means that while I was pregnant with him, some antibodies from my blood crossed through the placenta in to his blood and have been attacking it. From what I have read this occurs in 20-25% of pregnancies, but less than one percent of that group results in complications like Dillons. The hematologist is waiting on some more tests to verify the diagnosis (hemoglobinopathy evaluation, G6PD, and antitrypsin). These tests check for other possible causes as well as for liver damage/function. Tomorrow he will go back for a repeat hemoglobin check and a comprehensive metabolic panel. His hematologist was wonderful also. He actually gave us his personal pager number incase we had any questions or concerns.
After his blood transfusion Tuesday night his hemoglobin went up to 13.5. Still considered slightly anemic, but not dangerously so.
There are still a lot of unanswered questions ( like will his hemoglobin continue to rise) but he has a team of excellent Dr’s working for him and checking absolutely everything out!
We’re praying that his hemoglobin is still on the rise in the morning. As soon as we have more results I will update again.

July 20th, 2004

Just wanted to let everyone know that Dillon is back in the hospital 🙁 He went in for a repeat today and his hemoglobin is still dropping, it is down to 6.6. They also did another count (red blood cell I beleive) and that was low as well. The Dr basically said that his body was not producing enough blood to support his growth. He has been admitted for testing to find the cause. When we left to come home and get some clothes they were about to draw blood for about 5 different types of tests. He may be getting a transfusion tonight and tomorrow the hemotologist and neurosurgeon will be coming in. As soon as we know mre I will post, but we need ot get back to the hospital now.

July 19th, 2004

Well, Dillons follow up results were not what we expected. I got a call form his pedi today asking me to bring him right in, but they did not tell me what was wrong. I took him in and the Dr, a resident, a nurse, and a nurse practicioner all walked in to examine him. After a few minutes they finally told me that his hemoglobin had decreased further rather than increasing. Last test it was just over 9. This morning it was 7.7 and the repeat a few hours later dropped to 7.3 determining it is not from an iron deficiancy. The Dr is calling a hemotologist in the morning and will call me back with further instructions and informaiton. The nurse practicioner did make a comment that he looked a lot better than she thought he would after reading his results. I was happy he looked good, but the comment also made me feel like they were expecting a very sick baby to come in.
The good news is that the little man is gaining plenty of weight, today he was a whopping 8lb 14 oz!!!!
I will post more as soon as we have some more information.