Friday, June 13, 2008

Friday the 13th update...

At our blood work appt today we didn't need a transfusion, yeah! The bad news is Ashley's ANC (Absolute Nutrifil Counts - the first line of defense against potentially fatal illnesses) is still really low. On Tuesday is was 10 and today its just 15. Anything below 200 and if she gets a fever means we have 1 hour to get her to the ER. We were hoping she was above this danger zone today but she's not. Our dog (Musashi) has been staying with Grandma and Grandpa until Ashley's ANC is better. Any slight germ could make Ashley really sick. This means that not only does Ashley need to be careful, but Whitney's social life is very affected. Whitney can't be around anyone who has even the slightest cold for she could bring it home to Ashley. Because Ashley's ANC number is so low, they might delay her next chemo treatment. Her ANC has to be at least 1000 before they'll do chemo again. We were tentatively scheduled for Chemo on Wed the 18th but it will likely be delayed. We find out for sure on her Tuesday blood work appt.

We thought she was back to normal and she is with the exception of that ANC number. Her coloring is great and energy level is normal. She runs around the kitchen island and wants people to chase her. She went for a walk on the Burke-Gillman trail and went for a boat ride last night. That was great! Both Ashley and Whitney love Daddy's big boat (its a small boat but they think its big).

Did I mention her hair is starting to fall out? And she had her first bloody nose. All side effects of chemo. Nothing to worry about, just normal (sigh). Oh and we need a little nutrition help. Ashley still gets 90% of her calorie intake from breastmilk. She doesn't like much of any solids. If anyone has any good nutrition tips, we could use them. She doesn't even like juice. I can get her to eat chocolate chips, and a few other type of carbs like cheeto's but man... its difficult. Her weight is still stuck in the range of 10.2 kilos (22.4 lbs). This was the weight she was at before her liver surgery on May 16th. She's been at this weight since Jan 31, 2008. The tumor weighed about 1/2 pound so she's put some weight back on but we need more weight. She's been stuck between 10.4 and 10.2 kilo's for a while now. I don't want to scare you about her weight and must add that she began walking round Jan 31st so her activity could cause her weight to level out, however she should be putting on more weight now. - April


Cindy Webber Meeks said...

Tony and April,

Hugh just sent me an e-mail, I had no idea. I've just read the whole blog. Wow. Big stuff for a little girl.

Shawn and I will pray for you. That our God, for whom NOTHING is impossible, will heal your baby fully. We will pray that Whitney will thrive as it looks like she is and that God will supply you both with the strength and peace you need to endure. You are such great parents, I can see how you love your children!

On the sand box. Have you thought about a bean box? Bulk bags from Costco into a wading pool or bathtub? Normally I'd just pour them straight from the bag but you may want to wash them and find a way to quick dry so they don't sprout.

On the food thing. Keep in mind that a lot of toddlers get picky, you have an added issue but some of her behaviour may be normal stuff. My kids never liked juice, always went to water (until they discovered Gatoraide this year) not a bad thing, water is good for you! Try bagels from a good bakery or Cheerios or Rice Chex. (If she likes the cereal, you let me know and I'll get you a case on me!) Pizza crust, again from a good pizza shop, yogurt (try Brown Cow Full Fat...its yummy) Rice pudding, even Jello (my kids love it, I can't stand it!) Pirate Booty? Bananas? What did she like before she got sick and go back to that. She will most likely want to nurse still but that may be more for comfort than nutrition. Keep trying, she will find something she likes to eat. And then, when you find out what it is, you will rush to Costco to buy a gross of it only to find out the next day she likes something else!!! Don't give up!

I wish I had a magic wand for you. My heart hurts but I will belive God for a miracle.... He still makes them happen.

I'll be watching for updates, keep the photos coming!


SwaggerFam said...

Hi guys
Just leaving a note that you are missed and loved in Minnesota. You are the most amazing writers. I think you are handling everything so well. I wish I knew more about this and could offer you some advice. All I can say is that you're not alone in your battle and we check in often. You are incredible parents and a great team. I'm so sorry I can't offer you more help or knowledge. We just want your baby to get better really really bad.

Andrea said...
This comment has been removed by the author.
Andrea said...

Hi April & Tony,
Glad to hear that Ashley’s got some energy & is somewhat herself. Hope her blood work is good on Tuesday. Re: the nutrition & weight gain. I’m sure it’s hard to tease out what is typical toddler pickiness & what is being affected by her not feeling well. I used to work with nutritionists & I’ll send you an email with suggestions they’ve given for increasing calories & hopefully it’ll give you some ideas.
Hugs to you all,

Teacher Susan said...

Dear Ashley, Whitney, April, and Tony - I'm so excited to hear that you've been out on the big boat and walking on the BG Trail! When life is such a rough roller coaster ride, getting out in nature can be so invigorating.

When my daughters were little they didn't like "kids" foods but prefered to eat off our parental plates. They enjoyed intense flavors like Greek food (Kalamata olives & feta cheese)and Mexican food. But, whatever the food choice, it was more delicious sitting on Mama or Abuba's lap and eating off a big plate.

When Taitu was in the ICU as an infant, I only got to nurse her once a day but I pumped breast milk for her that she was tube or bottle fed. The nursing staff added some power-packed, calorie dense, nutrition powder that hugely impacted her weight gain. (She was only able to take in a miniscule amount of milk at a time to it had to be exploding with calories, etc.) I'm wondering if Children's will give you some of the fortifiers they use with infants to try. It might be worth expressing a bottle or two of breast milk and trying. Or, even adding it to whatever foods Ashley will take in.

And, I think that it is one of those times that whatever works for her is what you do instead of trying to follow "normal" nutrition guidelines. When my brother's friend was dangerously underweight in middle school, he lived on chocolate shakes!

I am off to the last day of school for my daughter Desta. Taitu declared that last Friday was her last day even thought the school district has a different idea. Sigh! Parenting has so many moments of beauty but not many moments that feel easy easy.

Hugs to you all! Teacher Susan