Bowling Diva

I will share Christmas pictures some time soon, but until then here is an unedited video of Charlotte's first bowling experience. It was a blast.




Have a very Merry Christmas!!

A healthy baby.

I had my 20 week ultrasound this past week. We were thrilled to find that the baby seems healthy--no apparent issues with its heart, brain, spine, kidneys and everything in between. It is measuring right where it should and we couldn't be more relieved.

We also found out....




We are evening the score here; 2 girls, 2 boys. Will is probably the most excited of us all, he hugged me after we told them and thanked me for making the baby a boy (someday we will talk about how I had nothing to do with that...hah!).

Loving the upswing.

A stack of Christmas cards litter the the end table waiting to be addressed, my last grad essay for a class begs to be written, it looks like Christmas threw up all over my messy/dirty house (in all the wrong places of course), and any attempt I make to create some order to this madness is quickly undone by a certain 2.5 year-old.

But, I am way overdo for an update. In an effort to make this quick so I can tackle my ever growing to-do list, I am throwing grammar and traditional writing aside and giving you a list of what has been happening these days.

-Charlotte continues to improve on a daily basis. The amount of energy and spunk she has these days is unfounded.

-Huge gains have been made in all areas of her therapy. Her therapists have been beyond impressed with her. In Speech, her spoken vocabulary has grown and now includes "daddy" (instead of dada), "poop," (which she says when she needs her diaper changed), "blue," "ease" (please)...as well as many, many new syllables that she is pairing with her signs. In PT, even though she regressed a bit with some of her skills during her illness, they are coming back quick and most importantly her desire to want to do things is back. We are currently working on stair climbing and running. In the words of her OT during therapy yesterday, "Charlotte, you aren't going to need me soon!" as she strung an entire strand of beads on her own.

-While talking with Missy the other day in the living room, Charlotte was roaming around playing with her toys in the kitchen. I realized it was "too quiet" and jumped up to find her...only to realize the patio door was open and Charlotte was across the backyard climbing up the swingset. When I said her name, she turned around and signed "hot"...though, it was freezing outside (and she was barefoot!), not really sure what she meant by that. Lesson learned, my 2.5 year-old can open the patio door.

-Yesterday Charlotte peed in the potty! Most of the "experts" warn that potty training in kids with Down syndrome will most likely be delayed, and I haven't given it much thought yet. Charlotte will turn three a month after the baby is born, so I figured we will wait to introduce it until after the adjustment to the new life in the house. However, lately she has taken a huge interest in the the potty (thanks to Potty Times!); she follows us to the bathroom and signs the entire process (potty, wipe, flush, wash hands). When I change her diaper she signs potty, so I let her sit on her potty for a few minutes each time. Yesterday Will took her to the bathroom, and started squealing that she had peed! She was very proud of herself, though she was mostly excited to "flush" it down.

-Charlotte hates Santa. Mike took her and Will to the kid's party for his company last week when Katherine and I were out of town. He tried to put her on Mrs. Claus's lap but she would have no part of it. Screamed bloody murder. Maybe next year?

-Her sleep schedule continues to be frustrating. She is a night owl, and a lot of nights won't go to bed until close to 11PM. She rolls around in her crib, chatting and whining. Naps are hit or miss, some days she takes a good 2-3 hour nap, other days she skips it all together. We are hoping to get on a better schedule before May!

-Charlotte also has a strong dislike towards the heart doppler at my OB appointments. I took her to my doctor appointment last week, and when the doc pulled out the doppler to listen to the baby's heart, Charlotte started screaming hysterically. Maybe she will get used to it by May?

-She got her first haircut! Check out the picture below...I was impressed, I thought for sure she would scream and end up on my lap, but she did really, really well. Her hair is much more even now and she looks less like Cousin It after baths.

-I ordered Charlotte new shoes for the first time in a year! Her feet are growing...and so is the rest of her! At the ENT last week, she had gained three pounds since her discharge from the hospital in October. Now that her body is absorbing all the nutrients, she is GROWING and THRIVING.

-Someone asked me last week if I thought Celiac disease was a "real" diagnosis or just some fad right now. Those who saw Charlotte the week before she was admitted to the hospital, and now see her know what I am talking about; it is NOT a fad. Her body can't process gluten, and in response made her very, very sick. After seeing her recovery, I have no doubt that she was sick much longer than we knew. I urge parents of kids w/Ds to know the signs and symptoms, and even though the AAP doesn't recommend routine screening, I would ask for it on a yearly basis. If I would have been more educated back in June, we could have possibly avoided months of regression and illness.

We are looking forward to Christmas and spending time with family! The next few weeks are going to be pretty busy, but hopefully some holiday pictures will be posted in the weeks to come! Enjoy your December!

Energy. Lots of it.

The amount of energy Charlotte has these days is amazing. It is hard to believe a month ago, this same little girl wouldn't move off her little chair and spent her days watching TV and sleeping. These days, she runs around the house like a crazy little girl, skips naps most days, and a lot of times doesn't go to bed until after 10PM! And despite her shorten sleep time, she is in a great mood most of the time. To say I am thankful for her improved health is an understatement. Yesterday her PT told Mike that Charlotte had her best session ever. Seeing the amount of energy she has made us realize how long she had really felt like crud. Yay for a gluten-free diet!

Some pictures of my crazy little lady....

Helping Dad put together his new grill...at 10PM, instead of sleeping. 

Her turkey craft from her speech/motor group. She was so proud of it. 

Trying on some new boots at Target. 

Painting, a new favorite activity. 

Enjoying the mild temps! 

Hanging with friends; books and dress up. 

"I should be in bed, but I'm not."

Playing in soy beans with dinosaurs. 

It's 10PM, do you know where your 2-year old is? Not it bed. 

Pregnancy after Down syndrome.

I know there are many curious people out there, many shocked by the news of a new baby joining our family this May. Those who know me best though, probably not so shocked, since I have openly talked about my desire to have four children for as long as I can remember.

Rest assured, the decision to expand our family was not taken lightly, and was very much planned. In fact more discussion and planning went into this decision than our other three children combined. Why? Because pregnancy after Down syndrome is complicated and in my opinion, super nerve-wracking.

Gone are the days of the care-free ignorance that accompanied my previous three pregnancies. I am now considered "high-risk." So far this pregnancy we have visited a genetic counselor and a high-risk obstetrician.  We will go back for a level II ultrasound in December, and possibly a fetal ECHO (heart ultrasound) after than.

All of these added precautions were/are our choice. Mike and I have talked at length about the possibility of having another child with special needs. We, obviously, needed to be open to the chance of it happening, because it is a possibility. However, this time, if at all possible, we want to be prepared.

It is easy to say, "I don't want prenatal testing because I wouldn't do anything, anyway, and I have such a low-risk it really isn't worth it." I know how easy it is to say this, because I said it--three times. I declined prenatal testing with all three of my previous pregnancies. However, until you have been completed blindsided while holding your 1-day old newborn,  as you find out she has Down syndrome, or four days later when you find out she has a major heart defect, you really don't know the impact of that statement.

It is because of this that Mike and I chose to have the "new Down syndrome blood test" done. At 12 weeks, they drew my blood and sent it off to a lab in California. Three different companies market/perform this blood test, the one we had done was called Harmony and would give us with a very high degree of accuracy an indication if our baby has T21, T13, or T18.

We did this test so we could prepare, or to bring us peace of mind. My thoughts on prenatal testing have evolved over the past two years, and now especially since I am carrying our fourth child. I know this test has created quite the uproar in the Down syndrome community; however, for us, it presented us with a non-invasive, highly accurate way of finding out early in my pregnancy if our child was going to have T21, T13, or T18.

Two weeks after the blood was drawn, the nurse practitioner called to tell me that the test came back "low-risk" for all three trisomies (with the Harmony test you can get one of three results; low-risk, high-risk, or positive).

Next month we will go and find out if all else is well with this little bean. I am still nervous, and probably will be until the day I deliver this baby. However, I am anxious to see this baby on the ultrasound screen again and hope that pictures of a four chamber heart and perfectly developing kidneys, lungs, brain and every other organ in between bring some more added comfort. I have had many questions about if we are hoping for a boy or girl. I tend to get a little snippy with questions like that because I have to say, that is the farthest thing from my mind. I truly could care less. I will end with the cliche, "My hope is for a healthy baby"....except when I say it, I truly mean it because I know what it is like to have a baby who is not born healthy.

Start spreading the news...

To all those whom I kept this secret from so long (pretty much everyone except for my husband and best friend): I apologize. We really wanted our kids to know before the rest of the world, and wanted to wait until the second trimester to tell them. 

She's back.

I can now truly report that Charlotte is back to her old self. It is absolutely amazing to see the improvement she has made this week. She eating like a horse, tearing apart the house, and the whining and whimpering has been replaced with smiles and giggles. She is back to acting like a 2-year-old, and we couldn't be more grateful. Can I also tell you that I haven't seen an episode of Signing Time in three days?!?!


What have we been up to?

A zoo class about cows...mooo!









Eating...


Swimming...


Shoe shopping...


Causing trouble in the wood box...


Making messes...


and making more messes....


Did I mention that she has been eating a ton?! 



Life is good.

Stayed tuned, a post about Celiac disease, how Charlotte is doing with the new diet, and what I have learned is coming soon.