Wednesday, November 21, 2012

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....


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

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

Photobucket
Trying on some new boots at Target. 

Photobucket
Painting, a new favorite activity. 

Photobucket
Enjoying the mild temps! 

Photobucket
Hanging with friends; books and dress up. 

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

Photobucket
Playing in soy beans with dinosaurs. 

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



Monday, November 19, 2012

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.


Sunday, November 11, 2012

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. 

Tuesday, November 6, 2012

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!

Uploaded from the Photobucket iPhone App

Uploaded from the Photobucket iPhone App

Uploaded from the Photobucket iPhone App

Uploaded from the Photobucket iPhone App

Eating...
Uploaded from the Photobucket iPhone App

Swimming...
Uploaded from the Photobucket iPhone App

Shoe shopping...
Uploaded from the Photobucket iPhone App

Causing trouble in the wood box...
Uploaded from the Photobucket iPhone App

Making messes...
Uploaded from the Photobucket iPhone App

and making more messes....
Uploaded from the Photobucket iPhone App

Did I mention that she has been eating a ton?! 
Uploaded from the Photobucket iPhone App


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. 


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.


Uploaded from the Photobucket iPhone App

Uploaded from the Photobucket iPhone App
Gluten-free ice cream cone with Lactose-free ice cream. Still a hit. 

Uploaded from the Photobucket iPhone App

Uploaded from the Photobucket iPhone App
The Bee. 
Uploaded from the Photobucket iPhone App
The Mario Brothers and Toad. 

Uploaded from the Photobucket iPhone App
Checking out the loot. 

Uploaded from the Photobucket iPhone App
Thank goodness peanut butter cups are gluten-free!

Uploaded from the Photobucket iPhone App

Uploaded from the Photobucket iPhone App
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

Surviving...barely.

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.


Uploaded from the Photobucket iPhone App

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

Uploaded from the Photobucket iPhone App

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

Aftermath

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.


Uploaded from the Photobucket iPhone App
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!