We have enjoyed the last week and Hannah has been feeling really good! On Saturday Hannah had made some complaints about her throat and had started showing signs of a beginning petechiae rash/bruising inside her mouth. We spoke to the on call physician on Saturday who ordered blood work and it showed that her platelets had already begun dropping and were down to 51,000 to 114,000 on Monday. We were sent home with instructions to watch her close and follow up at her scheduled appointment today. At Hannah's appointment today we found that her platelets continued to drop (which is typical with Evan's Syndrome) and are now down to 26,000. With this trend we expect that Hannah's platelets will be in the single digits and she will have to have a second transfusion by the end of the week.
Overall Hannah has continued to feel well but the frequent blood draws have proven to be more than she can handle at 7yrs old. Even though Evan's Syndrome is obviously a major challenge, the blood draws are the worst part. Hannah is an incredibly strong girl and it is difficult to watch her have to go through this knowing that frequent blood draws are now the reality of her future. For now Hannah is home again as her doctor wants to wait until she is symptomatic before treating her again so that her veins can have some time to rest and heal.
Some encouraging news we received today is that the tests they sent out when Hannah was originally diagnosed came back and showed that Hannah does NOT have ALPS syndrome in addition to Evan's Syndrome as they had suspected. Hannah's doctor said her Evan's has proven to be atypical at this point and he remains hopeful that once we get through this initial stretch her treatment plan will continue to be more of a maintenance plan that a fighting plan. That would obviously be our preference as well. The antibodies on her red blood cells continue to remain dormant and this is great news! If they were to activate it would complicate this puzzle significantly.
The next steps for now include more blood work and tests as they need to rule out some additional auto immune disorders/diseases as an underlying cause to her Evan's. We will also prepare for her next transfusion and make the most out of good days at home! With the frequent updates and possibility of a quick status change we are going to transfer our updates from email to the blog. I plan on spending this week catching up on a few things from the past as well as since Hannah's diagnosis. The blog will continue to have our family fun but the updates will be real time and will be there as well if you would like to continue to follow what's going on. If for some reason you cannot access the blog or only have access to email and want to continue to receive updates please let us know.
We appreciate everyone's continued thoughts and prayers...
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