Thursday, December 23, 2010

Merry Christmas!

As promised, in lieu of an annual Christmas letter, check out our "Year in Review" video. Merry Christmas everyone, and I can't say it enough--THANK YOU for all your support this year. It is my hope that you are able to spend this holiday enjoying times with family and friends.

Wednesday, December 22, 2010

The most incredible Christmas gift.

Some get their daycare providers ornaments. Some get them giftcards. Some bake cookies or have their children make them a card.

Sam (and the rest of the Neuharths of course) got me the most incredible gift. I can't stop staring at it, and each time I do it brings tears to my eyes. Now, these pictures don't do it justice, but you get the idea.

It is beautiful. Missy gave a photo of Charlotte to one of her colleagues (the art teacher) and this is what he is amazing.

Thank you Mis, for more than just this, for everything.

Here is the original photo:

Friday, December 17, 2010

How's Charlotte?

It has been awhile since I wrote about Charlotte's health. The reason being, she is doing so darn well, there isn't much to report. Our doctor visits have slowed dramatically, with only a 6-month well check in the past two months. She is growing well, as of a few days ago she is just over 14 pounds  and 26 inches long and while her BMI is in the 3rd percentile, this isn't too concerning as she is holding her growth curve. She actually weighs more than Katherine did at 6 months, I think we just make long and lean girls.

We are working on sitting and gaining core muscle strenghth. She loves being on the floor, and spends a ton of time on her tummy. She is pretty strong, and is on the fast track to being able to sit on her own.

Charlotte hates solid foods so far. She spits everything we try back out. I don't know if she has yet to swallow anything. In her defense, we have been a bit lazy about practicing. After all, she is the third child, who has time for baby food? Hopefully after the holidays when things settle down a bit we can work through her spitting issues.

The New Year is going to bring lots of doctor appointments. All routine checks, but it is crazy how many we already have scheduled. In January we go to the ophthalmologist for a vision screening, February is the Developmental Heart Clinic follow-up, the ENT for a hearing test, and the plastic surgeon to talk about when her surgery for her finger separation is going to be (we are thinking April or May). In March we have her 9-month well check, and early April brings her cardiologist appointment. Throw in a blood test every two months to check her thyroid levels and a bunch of PT appointments and we are already quite busy and 2011 isn't even here yet!
This is what Charlotte thinks of all the doctor appointments...

Stay tuned...

Tuesday, December 14, 2010

Upcoming Blood Drive....make your appointment!!

Awhile back I mentioned a blood drive being held in honor of two amazing boys--Zach and Sam. You can read their story, as well as find lots of good reasons why you should donate blood here:

 Last month I donated blood for the first time. It was something I had thought about doing before, but really never made the effort. As I sat there during the donation, I was reading the posters on the walls. Each one had a picture, and then a quote from someone about why they donate. One in particular really struck me. A woman, who had never donated before, now donates regularly after her son's open heart surgery. This will be me. I have vowed to donate blood every two months (which is as often as you are allowed); and I am fortunate to have my mom, Kate, and Missy to do the same. We have standing date every two months; give blood and then go to dinner.

Please don't wait, like I did, until you or someone in your family needs blood before you donate. So many people out there needs blood everyday, and it is a gift that most everyone can give. 

Blood Drive info: 
(My appointment is for 6PM if anyone wants to get dinner before or after ;-) )

Zach and Sam's Community Blood Drive
Wednesday, January 5, 2011
2:30pm-7:30 pm
Ten Chimneys, Lunt Fontanne Program Center
S43W31575 Depot Road, Genesee Depot.

Please make your own appointment via the schedule line

Thursday, December 9, 2010

6 months!!

Today, Charlotte is 6 months old. Where did the last 6 months go? I feel like it has been a blur of emotions. In the past 6 months I have gone from an emotional high (the birth of my child) to an emotional low (Down syndrome diagnosis, heart defect diagnosis), back to an emotional high (successful surgery), to finally some emotional stability. Throw in a million doctor's appointments and hours of worry and stress and those 6 months in some ways felt like 6 minutes.

How am I? Well, it depends on the day, and most times it depends on the minute. Most days, in the words of my son, I am great. I am a pretty optimistic person and have really focused on the positive the past 6 months. However, I would be lying if I said I felt great all the time. There isn't a day that goes by that I don't replay the conversation with the pediatrician the day after Charlotte was born...I can repeat it word for word. I think about life before that conversation, and then I think about life after. I still have moments of "its not fair" and "why her?" I still get angry, though less and less each day. I have accepted Charlotte's Down syndrome diagnosis, but that doesn't mean I like it. I have read many stories written by parents of children with Down syndrome and most say they would not take the Down syndrome away if they had the opportunity. I am not there yet; to me, Down syndrome is still the reason my child had to go through open heart surgery. Down syndrome is the reason that my daughter will have to face all sorts of adversity in her life. Maybe someday I will be one of those parents who embraces Down syndrome, but not yet.

There are days I cry; usually not due to anger, but rather worry. I worry about the future a lot. I know someday Katherine and Will are going to find out that their sister is different, and unfortunately not everyone may think she is as perfect as they do. How do I even begin to explain the ignorance of others to my children? I worry about Charlotte's health, because unfortunately that extra 21st chromosome can express itself in many different ways; hearing loss, delay in gross motor skills (due to low muscle tone), eye issues, thyroid issues....the list goes on and on. I try not to dwell on statistics (1 in 10 chance of leukemia...pretty freaky), but it still is worrisome. I worry about Charlotte's future, her education, what her cognitive level is going to be, future heart issues. I worry about things I can't change, and I know this, yet I still worry.

Don't get me wrong, there have been many, many happy moments in the past six months. I still find myself tearing at times when Charlotte smiles.  I love watching the interaction between Charlotte and her siblings; it is very, very sweet. The first thing Katherine does every morning is find Charlotte, and the last thing she does each night is hug and kiss her goodnight. I am waiting for the novelty to wear off, but then I wonder if this is just the beginning of a very special sister bond. The way Will grabs Charlotte's thumb and tries to make her smile is positively adorable. The excitement when Charlotte reaches each milestone is immense and shared by many. I find myself already changing for the better because of her; I am more accepting, less judgmental of others. I find myself having more patience and an appreciation of the "little things."

I am so very grateful for all I have. I am also completely, head over heels in love with my little girl. I can't imagine life without her, and look forward to each day with her. I really do feel like she is here to teach all who know and love her something; and I look forward to finding out what that something is. And while it has been a very intense 6 months, the joy I feel as I write this is knocking down the worry and anger. How can you not feel joy when you look into these eyes?

Happy 1/2 birthday Cookie! You are loved by so many.

Saturday, December 4, 2010

Sweet potatoes anyone?

We have officially began the solids...Charlotte isn't so sure about it yet, but she is getting better. Katherine and Will think it is hysterical when she spits her food all over the place. It's pretty cute.

"I'm not sure about this...."

"Seriously mom! What are you feeding me?"

"Help me out here, big brother!"
"Maybe it's not so bad!"

"Hey, I think I liked it!"

Thursday, December 2, 2010

Princess Charlotte

Katherine thought it would be cute to make Charlotte a princess. I would have to agree, she looks great in a crown!