One more step in our journey to recovery!!
Wednesday, April 29, 2015
Tubie Time!
Saturday, April 25, 2015
Strength and Beauty
I have been horrible about keeping up with our progress! This week my mom is here and I've been doing all the preparation that most pregnant women have been doing for the past 20 weeks. With just 4.5 weeks until my due date I finally pulled out the baby clothes, washed them and cleared out two of Selene's dresser drawers for them. With 2 bedrooms between the three girls but not wanting to rock the sleep boat (since it's already tossing in the waves as it is), we are leaving the bedrooms as is for now. The baby will sleep next to me for the first few months anyway, we'll figure out our next move after that.
As far as Selene, I can't even believe the progress that she is making. At her last appointment we found out that her engraftment is at 90%. Dr. Olson was beaming. Her ANC was 2460, higher than she's ever had even on Neupogen. All of her other numbers are up as well, including her platelets. We've stopped all medicine except her vitamin D (now super easy to give) and then an antibiotic which will be given twice a day on Monday and Tuesday and that's it. I think we have a year of that but it's a huge difference from what we came home
Due to her increasing health it also means her broviac will be removed this coming Thursday. I'm a little bummed that our easy blood draws are now going to mean weekly sticks, but I'm thrilled that her chest will be given the chance to heal and that we won't have to flush tubies and worry about the bandage peeling off, which seems to always happen on Monday when we have to make it one more day.
My brother was in Philly for business and was able to come visit and then join Dan and I out for dinner. It was so wonderful to see him! The girls love playing with Uncle John and we always end up with some gorgeous photos! He is so generous to share his amazing talent with us!
Since it's been too long, here's tons of pictures of the last two weeks!
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As far as Selene, I can't even believe the progress that she is making. At her last appointment we found out that her engraftment is at 90%. Dr. Olson was beaming. Her ANC was 2460, higher than she's ever had even on Neupogen. All of her other numbers are up as well, including her platelets. We've stopped all medicine except her vitamin D (now super easy to give) and then an antibiotic which will be given twice a day on Monday and Tuesday and that's it. I think we have a year of that but it's a huge difference from what we came home
Due to her increasing health it also means her broviac will be removed this coming Thursday. I'm a little bummed that our easy blood draws are now going to mean weekly sticks, but I'm thrilled that her chest will be given the chance to heal and that we won't have to flush tubies and worry about the bandage peeling off, which seems to always happen on Monday when we have to make it one more day.
My brother was in Philly for business and was able to come visit and then join Dan and I out for dinner. It was so wonderful to see him! The girls love playing with Uncle John and we always end up with some gorgeous photos! He is so generous to share his amazing talent with us!
Since it's been too long, here's tons of pictures of the last two weeks!
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| Her five minutes of time in the dirt, I scrubbed her hands as soon as we went in. |
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| Disc Jockey |
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| Climbing trees |
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| Enjoying the sunshine! |
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| Entertaining us |
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| Chowing down on an Edible Arrangement |
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| Her ladiness has escalated, riding side saddle |
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| Ballerina! I can't wait until I can sign her up. |
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| Wearing Mommy's dress when I was her age! |
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| Ainsley giving Selene a manicure |
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| When two men and a pregnant women go to Longhorn, you order 50ounces of Porterhouse. Mmmmm |
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| Photos from Uncle John! |
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| Best Friends! |
Saturday, April 18, 2015
The little things in life.
Yesterday Fedex delivered a box from the pharmacy (how much do I love that the doctors just tell them what we need and they overnight it to my door??). I had no idea what it was going to be, until I opened it up and found a little bottle of vitamin D! Reason 542,039 why I love our doctors. They listened to me when I said that Selene despised it and that it was a horrific daily struggle of tears, puking and sadness. I finally tasted it, it's like a black, metallic licorice. Seriously...science has come so far...and yet it hasn't.
Why they would even send 5ml of puke inducing vitamins when they could send a dose of 5 tiny drops, I'll never know. But I happily put the drops into her last gulp of milk and it was the easiest vitamin D dose ever.
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Why they would even send 5ml of puke inducing vitamins when they could send a dose of 5 tiny drops, I'll never know. But I happily put the drops into her last gulp of milk and it was the easiest vitamin D dose ever.
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| A happy trade. |
Other than that we are just taking advantage of all this beautiful weather!
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| Mementos from cleaning out the car, lots of parking tickets, a visitors badge and $300 worth of Neupogen. |
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| Big sister teaching her how to ride the scooter! |
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| Watching the video of Ainsley's school on Fox News! |
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| Like every day is Easter |
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| Helping Daddy! |
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| Teeth and tubies! |
Wednesday, April 15, 2015
Another week of clinic, school pickup/drop off and driving through Dunkin Donuts.
I've been terrible about keeping up recently. Selene has had some terrible sleep regression. Bedtime takes 2 hours, she is up multiple times a night, and a few times has been up for the day at 4:30. Mix that with being 8 months pregnant and being unable to sleep when I'm actually in my bed and I'm barely functional.
We had a great clinic day on Tuesday. Ainsley wanted to come with us and the girls were so good, it was actually wonderful to have them be together (that and dropping Ainsley off at Nana's last week was traumatic for Selene.)
Her ANC is 1850. I think that's the highest it ever was other than when we were trying to figure out her Neupogen dosage and shot too high. Her white blood counts and hemoglobin were both higher too. The only thing that dropped was her platelets, which isn't abnormal, but it just means we'll leave her Broviac in a little longer so that she can get a once a month IV medicine since the alternative oral medicine can inhibit platelets.
They also took blood for another engraftment study, but our doctor is really optimistic since she can't make neutrophils on her own the indication of a successful graft is fairly obvious. I'm not expecting their call until Monday and the wait is killing me!
Her skin is also craziness. Strange pigment from the chemotherapy and redness/chapped skin from all of the tape from her lines. So that's sad, but so far no signs of graft vs host rashes!
Now that the weather is nicer it is a little easier to be stuck at home. I mean, the benefit is not having to go anywhere. The downside is not getting to go anywhere :-) I get a little sad when I see pictures of our friend's kids at the park/playground. Our Little Tikes slide and walks around the neighborhood will just have to make due until July.
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We had a great clinic day on Tuesday. Ainsley wanted to come with us and the girls were so good, it was actually wonderful to have them be together (that and dropping Ainsley off at Nana's last week was traumatic for Selene.)
Her ANC is 1850. I think that's the highest it ever was other than when we were trying to figure out her Neupogen dosage and shot too high. Her white blood counts and hemoglobin were both higher too. The only thing that dropped was her platelets, which isn't abnormal, but it just means we'll leave her Broviac in a little longer so that she can get a once a month IV medicine since the alternative oral medicine can inhibit platelets.
They also took blood for another engraftment study, but our doctor is really optimistic since she can't make neutrophils on her own the indication of a successful graft is fairly obvious. I'm not expecting their call until Monday and the wait is killing me!
Her skin is also craziness. Strange pigment from the chemotherapy and redness/chapped skin from all of the tape from her lines. So that's sad, but so far no signs of graft vs host rashes!
Now that the weather is nicer it is a little easier to be stuck at home. I mean, the benefit is not having to go anywhere. The downside is not getting to go anywhere :-) I get a little sad when I see pictures of our friend's kids at the park/playground. Our Little Tikes slide and walks around the neighborhood will just have to make due until July.
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| When we pulled into the parking garage Selene asked "Wear mask?" It made my heart break and laugh at the same time. |
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| Such a good big sister! |
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| They always get really hungry... |
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| Loving being outside! |
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| Ainsley woke up, got dressed and made her bed before school and before waking me! |
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| Cool kid working on her clock puzzle. |
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| "helping" me clean the car |
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| Another fun package with Disney stuff came from Chris! |
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| She wanted me to put this clip in her hair.... |
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| Things that can happen when you're bald, your sister can accidentally color on your head. |
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