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.

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.

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!

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:

Playing ball with my brother. 

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

Watching Will's soccer game. 

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

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

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.

A teaser.

I have a bad headache tonight; after a few hours of staring at the computer screen catching up on emails and grad work, I need to shut it off. However, on my "to-do" list today was to blog about Katherine and Will's birthday party this past weekend. Since that isn't going to happen tonight, here is a teaser to hold you over until I get to it. In a nutshell, it was a ton of fun. Kids and adults alike had a blast. More to come.

Zoo class

We are lucky enough to live close to a fantastic zoo with lots to offer. One of the perks is wonderful zoo classes, in which kids of all ages can learn about different topics each month. The classes are split by age group, with the young kids attending with a parent/adult and the older kids by themselves. Will goes once a month to class with my dad, and Katherine has taken a handful of classes as well.

I decided to sign Charlotte up for a few of the 2 year-old classes. My good friend Deb, and her daughter, Quinn, signed up too. Charlotte was happy to have a buddy in class!

Last week was the first class. The topic: trains. I was a bit nervous beforehand. I wanted to Charlotte to fit in with the other kids, and I wanted the instructor to treat her like the rest of the kids in the class. The only other experience I have had with Charlotte in a toddler class setting was swim lessons, in which Charlotte did great, but the instructor had "a special place in her heart for kids with disabilities" and felt the need to single Charlotte out every chance she got. The instructor meant well, but after a few lessons it got a little old.

Waiting to go into class. 

This time was completely different. If anything, I had too high of expectations for Charlotte. Deb reminded me a couple of different times that it was okay for her to get up an explore, instead of finishing each activity in its entirety; after all she is two and all the other kids were doing the same thing!

Charlotte loved the painting and playing with colored shaving cream, as well as demonstrating all her animal signs as we completed our zoo train costume. The instructor was great; asking Charlotte what her favorite sign was after sharing with her that she really liked the "bat" sign.  Charlotte sat really well during circle time and participated in the shape train activity.

The class ended with a trip on the zoo train, which of course was a hit. And, as we were walking out, Deb gave into Quinn's pleas and Charlotte's constant signing "Please" as they both stared longingly at the carousal.

Next month we learn about cows, and in November the topic is horses. We are excited!

First Day of School

Katherine started 1st grade yesterday. My confident, almost 7-year old had been looking forward to this day for weeks.

Thankful, the first day of school was everything she hoped for and can't wait to go back! I hope her love of learning continues in the years to come!

Will started 4K today. My laid-back, "go with the flow" son is a week away from turning 5, and he walked into his classroom today excited to be there. He had a great day and told me he thought it was going to be a "fun" year.




I had a hard time getting Charlotte to leave; she wanted to stay and play with her brother.




I am so glad they both are excited for school and like going; it makes my job as a mom much easier! Charlotte will continue her regular weekly therapies this week, as well as do monthly zoo classes with her buddy Quinn, and possibly start participating in a speech/motor group at her therapy center. Her first zoo class is on Friday; the theme is trains, stayed tuned for an update/pictures!

See ya, summer.

Today is the first day of school (well for Katherine; Will starts his final year of preschool tomorrow), which means summer vacation is officially over. I am a bit bummed and a little cranky today. I have enjoyed the past couple months; the warmer weather, a more laid back schedule, and lots of fun play dates with friends.

However, before we said goodbye to summer, we had one last hurrah, and spent five days up north with my parents and brother/sister-in-law/nephew. We all had a great time and it was the perfect way to end a pretty relaxing summer.

A recap of our trip....

we fished...


and spent time on the boat...






(Charlotte got angry when she had to get off the boat.)

played on the beach and swam in the lake...




went hiking...




went tubing...


snuggled with Tucker....


and thanks to Erin & Paul, had shoe-tying success!! 


All in all, it was a great way to say adios to summer. Until next year...



Have a great first week of school to those of you going back. I will be back tomorrow with a few of our first day pictures.