Now that Morgan's levels are stabilized with three 0.18 ml injections of Neupogen a week, Dr. Grayson told us, and even encouraged us, to get her around kids more. I asked how her immunity compares to a kid without Autoimmune Neutropenia. He said it is as good or better and explained that the poison that kills bacteria in the blood is stored in granules and with the Neupogen, supposedly her poison is more lethal to bacteria. He said she will still get viruses like any other kid until her immune system builds up the memory in order to fight them but she should have much better immunity against bacteria than previously. (Neutrophils' main role is to kill bacteria). SO, our new protical if/when she gets sick is to get her into our regular pediatrician when she has a fever over 101. Then, they can give her antibiotics and give her a bloodtest. That was the best news we have heard in a while!
The irony is that if her ANC (absolute neutrophil count) levels had not been so low in the beginning, she would not have been a candidate for the Neupogen. About 1/100,000 kids have AIN and I would estimate that less than 10% have levels low enough to be on Neupogen. The Neupogen has really been a blessing because its allowing us to do some things that we wouldn't have been able to do. We are extremely blessed - first of all that Morgan does not have the type that can be a precursor to leukemia AND many kids with what Morgan has have already had several trips to the hospital. Even with her extremely low numbers (0 at one point), God has kept us out of the emergency room!
Our routine every night as I give Morgan her bath is that I pray God will also wash away the antibodies that are killing her white blood cells. We are so thankful that she has the type that she WILL go into remission. The timing is just up to God.
I have started an Autoimmune Neutropenia facebook page for parents of kids with ain. There are only about 20 members but my goal is to be a source of encouragement and information. It's so hard at first because there are very few with this disorder. Also, I have found that many moms can be very discouraging as they don't trust their child's doctor or ours for that matter.
We are both becoming more social, especially Morgan. She has been to Inneract childcare twice. The first week she went around giving all the other kids a hug and kiss. Last week, a friend of mine said she heard a little girl shreaking excitedly. Sure enough, it was Morgan shreaking for joy and clapping her hands. She also likes to show them her dance moves. Morgan is such a little extrovert and I'm glad she can start to get around kids again. She has such a loving personality as she always gives us kisses and says "I-ya!" which is how she says "I love you." She has already cut through two of her two-year molars so that hasn't been much fun but at least there are only two more to go.
I'm also enjoying my Bible study and will actually get to lead one of the women's small groups in the fall. I have really been itching to serve in ministry again and it is something I have missed. With that said, I'm no longer going to be selling hair bows on etsy.com or facebook. It was a great way to earn some extra money while we are stuck in the house, but its time to move on. Morgan will of course have the cutest hair bows in town!
My parents are officially moved into their new home in Woodcreek, just north of the new hospital. The house is absolutely gorgeous and its pretty surreal that they are there. Their house has probably more trees than any other in their neighborhood so the back yard is a bird sanctuary of sorts. Of course my mom loves that! Their yard and house has already been host to three different nests in the last couple months - barn swallow, mourning dove and wren. Needless to say, the yard is very Lumberton-esk but not nearly as hard to mow. God is definitely in the details.
Other than the obvious benefits of them being here to spend time with Morgan, we have also inherited some of their slightly used appliances that were either from the rental house or their new home. It has been SO nice to get some new appliances in. Our oven was original to our house and wouldn't even maintain temperature so now we have a much nicer one!
Due to Milk Spill 2012, we had to pull up the carpet in Morgan's room. Basically, a sippy cup of milk was left under her crib and spilled. After lots of attempts to get the smell out, we gave up and I replaced it with the same flooring in the rest of our house. It was definitely time to get the old carpet out of there.
So, we have lots of exciting changes in our lives. Hopefully our next post will include details on getting Morgan out even more. Thanks for so much for your continued prayers!
No comments:
Post a Comment