Our weekend was pretty uneventful..we stayed in most of it, but the weather on Sunday was sunny and 75degrees, so we went for a nature hike with Cher and her kids. Eli stayed in the stroller with his mask on and did a pretty good job. Apparently I can take him outside when his counts are low, I just need to be sure to take the proper precautions. So that means with the great spring weather we will be outside lots!!!
We went back to the clinic both yesterday and today. Yesterday was our normal check, and today I took him in because he seemed under the weather. I told the nurses that I really feel as though I have my first newborn baby all over again...all of this is so new and scary. I'm not sure what is just normal and when I need to have him see a doc. He has been battling a cold (so have I) and I think it got me nervous...but,. they sent us home today after giving him some fluids and checking his lungs, etc.
His counts are going up, now is ANC is up to 340 and his other counts are recovering as well :) We will go back into the hospital on Monday to start the next round. It will be very much like the past month, but without all of the Lumbar Punctures (Yea!!) I am very concerned about the oral meds we will be giving him every night. It wasn't that big a deal before, but that was before all of this throwing up stuff that he has decided to pull. It has become quite a struggle every morning and evening to get him to take the meds and keep them down. Please pray that he will become more compliant about this. It is such a stresser because we know he needs these drugs so much!!
We found out that our "three years of treatment" will actually begin when we begin Interim Maintenance which will be in about 5-6 weeks....not that it makes that big a difference, but WOW what a bummer...it seems so long to think we will be living this until May 2010 or so....then they see him for 5 years after that and then they will continue to see him occasionally until he is 18..when I think about that it really blows my mind. But it will be wonderful to see him at 18!!!
John is out of town this week. Thanks to Jennifer, Cher, and Danielle I have been able to make both of these clinic visits without a problem. Thank you, thank you, thank you!!
1 comment:
Hey Maria,
I love the photo! PRECIOUS! I have been keeping up with Eli's page. It is the last thing I do at night. I have really appreciated your honesty in these last entries. Just wish I could reach through and give you a big hug. I will continue to pray for Eli and the rest of the family. Specifically for compliance with the medicine. I really miss seeing you. I will pray.
May God's peace embrace you!
Lori Sims
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