Wednesday, October 31, 2012

Looking up.

Yes, things are looking up--thank goodness! The past month has been incredibly stressful and we welcome some good news around here.

Charlotte's blood counts came back yesterday, and both her platelets and her WBC have increased into the normal range. Yay! We are cautiously optimistic that they will stay there and we will never have to deal with the oncology clinic again. However, she will continue to have periodic blood checks just to make sure. I have to say, when I heard this yesterday, for the first time in weeks I breathed a sigh of relief. I have been on edge, freaking out about every mark on her body thinking it could be a new bruise or the start of a rash; it is hard not to assume the worst.

Charlotte finally has started to feel better. Sunday was the first day we really saw a change in her demeanor, and it has definitely continued to improve throughout the week. She is still weak and has lost a lot of muscle strength, however, with the exception of walking around like a drunkin' sailor, she seems to be on the mend. She is happier, taking more of an interest in her toys, and enjoying food again. We can definitely see the gluten-free diet working.

I will leave you with a few pictures. Charlotte still wasn't feeling like herself when the older kids went trick-or-treating, so we didn't even attempt to put on her costume. She hung back and helped hand out candy instead.

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Gluten-free ice cream cone with Lactose-free ice cream. Still a hit. 

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The Bee. 
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The Mario Brothers and Toad. 

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Checking out the loot. 

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Thank goodness peanut butter cups are gluten-free!

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Charlotte and I have been doing a lot of grocery shopping lately; checking out gluten-free options. This is her response when I asked if she liked shopping...
Thank you again for continued thoughts, prayers, messages, emails, letters, phone calls, etc. We have really, really appreciated all the support these past few weeks and realize how lucky we are to have so many people in our lives who care about our girl. Thank you.

Wednesday, October 24, 2012


It has been a rough week. This is going to be quick, as my time is limited and my to-do list is eight miles long. Thank yous from Katherine & Will's birthday party have been sitting on my end table for over a month...maybe you will get them by Christmas?

Charlotte is pretty much the same. Eating a little bit better some days, but her demeanor has remained the same. Clingy, crabby, whiney. I hate to admit it, but I look forward to nap time and bed time so I can get a break from the whining. I keep reminding myself that it is going to take time for her body to heal and we need to be patient. However, it is hard. Mike and I are both exhausted, and in turn very "short" with each other and the older kids. Just keep swimming, just keep swimming....

Smiles are few and far between, but I caught a few the past couple days. I hope when I come back and write the next update we will be on the upswing.

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Uploaded from the Photobucket iPhone App
Trying out the awesome gluten-free cake our friend Alison made us!

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Oh yeah, best purchase in our gluten free quest was a panini maker. I have yet to find a brand of gluten free bread that tastes good when it isn't toasted, so we have been eating a lot of paninis. Charlotte loves 'em!

Friday, October 19, 2012


After a few days at home, I wish I could report that Charlotte is healthy and has returned to her usual, happy self. Unfortunately, that isn't the case. My girl is clingy, cranky, and all around just doesn't feel well. Getting her to eat and drink is quite the feat, and I have resorted to vanilla ice cream for lunch a few times just to get something in her stomach. She is weak, hardly walking, still having major intestinal stuff going on, and has lost more weight.

We know that it is going to take awhile for her body to heal itself. The nutritionist we met with yesterday told us to expect at least two weeks before we see a change, and a few months before we see a major difference. We spent a few hours at Children's yesterday learning about about gluten-free living. It is interesting to see how diagnoses effect everyone differently; there were a couple other families in the training with us, clearly rocked by the loved one's Celiac diagnosis. Mike and I are actually happy to have this diagnosis; not that we ever what something to be wrong with our child, but compared to what I thought she was going to be diagnosed with early this week, we are thrilled she has something that can be controlled by diet.

So, we truck on. I offer her multiple types of food all day long in hopes that she will eat. Right now, it isn't that she is turned off by gluten-free food, but rather just food in general. She associates food with making her feel crummy, so she doesn't want it. The one thing she does want is to nurse, which at this point, I am happy that she is at least getting some good nutrition in her belly a few times a time. However, because she is still nursing, I also have to be on a gluten-free diet. I will get to know first hand what she will experience the rest of her life.

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Charlotte at dinner tonight; lots of choices, but nothing looked good to her.

Thanks for checking in! We are going to attempt to have a relatively normal weekend, I'll let you know how it goes. Enjoy your weekend!

Tuesday, October 16, 2012


This is going to be quick, as I am exhausted and all I can think about is taking a hot shower and sleeping in my own bed.

We are home! We are all pleasantly surprised that they let us go tonight, and Charlotte is thrilled to be home.

The rest of the today in a nutshell...

GI doc (who looks exactly like Robin Williams) came and diagnosed Charlotte with celiac disease after receiving the results of her screening. Her levels were pretty high, and most likely this is the reason for her increased fatigue, lack of energy, and willingness to want to do any activity. It also most likely is the reason for her diarrhea  weight loss, and crankiness. Yay! We have an answer. The solution? A gluten free diet. There is a learning curve, but I am sure it will soon become a way of life. We meet with a nutritionist on Thursday for a 3-hour gluten-free living crash course.

I wish that all the worry could be erased. However, celiac disease, unfortunately is not the reason for her low platelets and white blood counts. We don't know the reason for this, and will still monitor them weekly over the next few months. I wish today could have ruled out leukemia completely, however, there is still the possibility that we caught the low platelet level early, and did the bone marrow biopsy too soon. Kind of a weird concept hey? Catching cancer too early?

Celiac and leukemia can be related. Celiac and autoimmune disorders (like thyroid issues) can also be related. We hope with diet changes, symptoms will improve and blood counts will return to normal.

Again, I can't thank you enough for your support.

Good-ish News.

In the words of the oncologist  "I have good news. The bone marrow, as of right now, does not indicate leukemia. However, we are not out of the woods yet, as her blood counts are still off and we don't know why."

The plan is to do blood work every 1-2 weeks to check her levels and pray they go up. He also didn't have an answer to her lack of energy/lethargy, so we are hoping that improves as well. They are sending her marrow for a more in depth chromosome study. In addition to her extra 21st chromosome, most kids who develop leukemia have other additional dna material. If her blood counts continue to get worse, another bone marrow test will be done. It could be that we just caught it too early.

I am taking a bit of a deep breath right now, and hope like heck she starts to feel better.

More later, not sure when we are going home. Oncology is ready to discharge us, but we are waiting on GI.

I'll keep you posted. Thank you, thank you, thank you.

Monday, October 15, 2012


Tonight I am feeling pretty broken, very sad, and incredibly scared.

Charlotte's bone marrow biopsy is scheduled for 10AM tomorrow. I am not feeling optimistic at all. Call it a gut feeling, or the vibe I am getting from a few of the doctors and nurses here, but I feel that everyone already knows the news we dread will be confirmed tomorrow. A few have made comments that I felt were "preparation" for us. I hope I am wrong. I hope by typing this I just jinxed it and everyone can look back at this tomorrow and give me a hard time for being more positive.

I just want my baby to feel better. It sucks seeing her like this.

I will update when we know more. I think they told me it would take 3-4 hours to get the results after the biopsy.

Until then, if you aren't on Facebook, here are some pics from the day. Thanks for checking in. We felt lots of love today in the form of texts, emails, Facebook, and calls. I apologize for not responding to a lot of you, please don't think your message or prayers are overlooked. We are blessed.

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Looking for answers.

Last night, after consulting with our pediatrician, we decided to take Charlotte to the ER, and ultimately admit her to the hospital to figure out what the heck is going on. Her health declined all weekend; to the point where she would not move off our laps all day Sunday, ate/drank next to nothing (except for nursing....that she has upped from her normal once a day to 5-6 times a day, I am sure for comfort mostly), and whined/whimpered the entire time she was awake.

Almost twelve hours after being admitted, we know nothing. Charlotte was hydrated, and immediately perked up and ate an entire medium fry from McDonald's, the most she has eaten in a week. She slept okay despite the constant disruptions from nurses, and seems in okay spirits. They did more blood work last night, this time showing her platelets still low (though a bit higher than Friday) as well as her white blood count. However, no abnormal white blood cells have been found as of yet.

Both oncology and GI have been in to see her this morning. Oncology, obviously wanting to rule out leukemia. Their plan is to give it another 24 hours and repeat her CBC tomorrow morning. If her counts are still off, they will do a bone marrow biopsy tomorrow. GI wants to rule our celiac disease (which they say could be causing the diarrhea, but not the low platelets), so they drew blood for a celiac panel today. Those results will take a week, however.

That is all I know. Charlotte is doing okay. She was cranky this morning, but when Mike got here, she immediately perked up shouted "hi" and signed "dada." I think she was happy to see a familiar face and not someone else who would poke and prod at her. She is in a really good mood right now, eating a fruit cup, sitting on Mike's lap, watching her um-teenth episode of Signing Time this morning. Lets hope she naps.

Thank you, thank you for all the messages of love and prayers. It means so much to us to have such a huge "web" of support behind our girl.

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Saturday, October 13, 2012

Rainy, Gloomy Heart Day/Birthday

Today, we celebrate Katherine's 7th birthday and Charlotte's 2nd healthy heart day. However, right now, the weather mirrors my mood.

Worrisome things are going on in our household. For the past three weeks, on and off, Charlotte hasn't been feeling well. Lots of intestinal stuff going on and just all around lethargy. When she is awake, she often signs "sleep" and rarely wants to leave her little chair in the living room. She repeatedly signs "baby signing time" (meaning she wants to watch TV) and is incredibly hard to engage in play. At therapy, which she loves, she has been withdrawn and hard to motivate, often folding herself in half on the floor and refusing to participate.

I have tried to figure out what is going on--at first I thought a virus, then maybe a food allergy? I took her in last week for a strep test after Katherine had been sick with strep, maybe that was it? Nope.

Yesterday morning, I knew it was something more. This behavior is not typical of Charlotte. I took her to the pediatrician, and they did a blood draw (what a mess that was!) to check various levels.

As a parent to a child with Down syndrome, the big scary medical issues are never far from your mind. You are always waiting for the other shoe to drop. Children with Down syndrome are 10-20 times more likely to develop leukemia than typical children. I know the signs to watch for, I follow blogs of children currently facing this awful disease, and I have often thought to myself that I can handle everything that comes with Down syndrome--but that.

The oncology clinic at Children's hospital called yesterday afternoon to schedule an appointment. Apparently, while they assured me they are not diagnosing cancer, Charlotte's blood work was wacky, and coupled with her crazy behavior, warranted a trip to the oncology clinic to explore things further.

Our appointment is Tuesday. To say that I am a nervous wreck, is an understatement  I have visited a lot of clinics at Children's during the past couple years; I truly thought oncology would be one we could avoid.

It is ironic that two years ago, on October 12th, I was a crying, nervous wreck as cardiology called and had to move up Charlotte's heart surgery. Yesterday, on October 12th, I was a crying, nervous wreck as the secretary from the oncology clinic called to set up an appointment for Charlotte.

This could be other things--a virus, some sort of infection, etc. We are trying not to jump the gun, but that is easier said than done.


However, until then, we have some celebrating to do.

Seven years ago, my little red-headed peanut came into this world and made me a mom. Today, she is a strong-willed, independent girl with a zest for life. We often butt heads; mostly because we have a lot of personality traits in common, but as much as she stresses me out at times, I am so proud of who she has become. She has grown so much over the past year (I think elementary school does that to kids!), and has done so well. Her first-grade parent/teacher conference was on Thursday, and her teacher had nothing but good things to say. She loves reading/writing, and is a great asset to their class. At home, there are the fights between siblings, but for the most part, I can always count on her to help me out with Charlotte or around the house. She really is a "typical oldest" child and possesses a boatload of maternal traits.

Two years ago, I handed my younger daughter, who was in heart failure, over to a team of doctors/nurses who repaired her heart and made it a possibility that she will never have to have another heart surgery. Charlotte came home healthy, and full of life after only five days in the hospital. The amount of joy she brings to our lives is astronomical, and I cannot imagine life without her.

I said it last year, and I will say it again, October 13th will always be about my girls.

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Happy 7th birthday to my eldest and happy 2nd heart day to my youngest! Love you girls so, so much.

Off to make chocolate chip pancakes and open presents, have a good Saturday!

Monday, October 8, 2012

A Down syndrome break.

Hello all!

To answer a few recent questions from my readers...

Yes, I realize it is Down syndrome awareness month. No, I am not doing the 31 for 21 blog challenge this year. Why? I am on a self-imposed Down syndrome break. For the past 26 months I have immersed myself into blogs, message boards, informational books and websites as well as the local Down syndrome community in an attempt to wrap my head around my daughter's diagnosis. I spent sometimes hours each night reading, learning, and planning out ways I could best help my daughter. And guess what? I am burnt out.

Please know this; I am NOT on a Charlotte break. I love my daughter with all my heart, and will continue to do everything in my power to provide her with all she needs to succeed. However, I am taking the advice of a friend. No more reading blogs and message boards for hours each night for awhile, instead ticking off some of those things that have been on my to-do list forever (like the kid's yearly photo books...I got to year 2 for Katherine and that's it..which means I have about ten to do!) and maybe picking up a new hobby or two?

Don't get me wrong, Down syndrome awareness is very, very important to me. However, I long for a day when "Down syndrome awareness month" doesn't have to exist, because Down syndrome will be accepted by society. Having an extra chromosome won't mean battling stereotype after stereotype, but instead be "okay." A mom can dream, right? (Disclaimer: I do realize that in order to get to this place, we need to spread awareness/knowledge, which is what DS awareness month does. Remember how I like to live on a optimistic cloud sometimes?). That dang fine line of "hey, I want my kid to be treated like every other typical kid" and the "hey, look at my kid, she's special--please donate money/time so I can make everyone aware of that"...I struggle with this one a lot, but that is a whole different post for when I am no longer on my DS break.

Because I am not on a Charlotte break, here is what she has been up to lately....looks like a whole lot of typical 2-year-old stuff if you ask me:

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Playing ball with my brother. 

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Testing out her new potty. Charlotte signed "amazing" when she sat on it (those Potty Times friends with understand this one). 

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Watching Will's soccer game. 

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Shopping with mom (and enjoying her new favorite snack...don't try to cut it up though!). 

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Welcome to fall in Wisconsin! Bring on the 40 degree days. Brrr. 

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Sandbox fun on a windy, cool,  fall day. 

Thanks for sticking with me even though blog posts have been few and far between. I am not a blog writing break; I will be back to update about my girl. A Charlotte update written by Charlotte, as well as another party post, and a 2nd heart day/7th birthday post to come.