Tuesday, March 29, 2011

Resiliency

Children, especially babies, in my opinion, are very resilient.


Charlotte's surgery went well, and she is doing great. Yesterday, after surgery, there was a period of about three hours where she was pretty cranky, and the only thing that helped was snuggling with me and nursing. I didn't mind. At that point, I was just happy to have my baby back in my arms.


Mike went home around dinnertime to be with Katherine and Will, while my mom, Missy, and Kate brought dinner to the hospital and kept Charlotte and I company for a bit. Charlotte put in a pretty decent night, and woke up in good spirits.


Luckily she was able to be discharged early. We grabbed her prescriptions on the way out of the hospital and went to pick Katherine up from school.


Will spent most of the day with Kate, so we were able to take the girls out for lunch. Needless to say, Katherine was thrilled to see her sister and anxious to show off Charlotte's cast to all her teachers preschool friends.


It is amazing to me that, despite a huge plaster cast, Charlotte is back to herself less than 24 hours after surgery. However, napping in her crib today didn't seem to be on her agenda, so she took advantage of Daddy being off of work.


And after her nap, she proved to us that nothing, not even a full arm plaster cast, is going to stop her.


She figured out pretty quickly how to move with that thing on her arm.


And immediately went after her big sister's beloved pink monkey (the only object in the house that Katherine is not willing to share with her baby sister).

 Kate was nice enough to stick around to help with the kids and make us a yummy dinner.

  

A dinner that even Charlotte enjoyed. She quickly figured out she really only needs one hand to shovel rice, carrots, and bananas into her mouth. 

Yes, children are resilient. So much more so than us adults. Once again my baby has proved to be quite the rock star. Way to go baby girl, way to go. 

Monday, March 28, 2011

Cranky, but doing well.

We are in our room and she is doing okay. She is pretty cranky, especially when they try to touch her, but she just nursed for a bit and she is sleeping on my lap while I write this. One arm has a big, blue cast the other is wrapped up with an iv. I'll update more tonight when I have the use of both of my hands!

Out of surgery

Just talked to the doc, all went well, we are waiting now to go see her in recovery.

Here we go again...

They took her back about ten minutes ago, a little earlier than expected. Being here, in the family waiting room, is a not so nice reminder of the last time we were here.

Charlotte did really well this morning. She had her first taste of juice because she could only have clear liquids after 6am. She thought it was pretty awesome; I told her not to get used to it!

After we got here they gave her a drug to make her a little woozy, she was pretty funny after that. We met with the surgeon and anesthesiologist and then they took her back.

I will update after the surgery!

Sunday, March 27, 2011

The knots are back.

Charlotte's surgery is tomorrow. It sucks, it's not fair. At only 9 months old she is about to endure her 2nd surgery. It just doesn't seem right. I am trying to keep it in prospective though.

Hopefully, this one will be much easier than the last. The surgery will take about 2 hours and is scheduled for noon tomorrow. She is expected to recover well; though she will have to endure two weeks in a cast that goes up to her shoulder. They are keeping her overnight to keep an eye on her vitals due to her previous cardiac surgery. I'll update from the hospital when I can.

I have spent some time this weekend looking for sleeveless shirts and onsies (I also had help...thanks Missy!). Outfitting a baby with a full-arm plaster cast would be easier if it were warmer than 30 degrees outside, because in addition to these sleeveless options, I also searched through bins of Katherine's old clothes looking for sleepers and a zip-up hoodie or coat to cut an arm off of. Where is spring?!?

I am off to bed, in an attempt to ignore the growing knots in my stomach and get some sleep. We will be up bright and early as Charlotte can't have any solids after midnight and breast milk after 6AM.

Thoughts and prayers for tomorrow are appreciated!!

Friday, March 25, 2011

Random thoughts

I downloaded the past few days of pictures onto the computer tonight. There were a couple cute ones, that are in no way related to each other, so I thought I would throw them together into a "random" post.


This is a common occurrence at our house; Mike surrounded by both his work and personal laptops, and the newest addition to our household, the iPad, in which in this picture, he was watching a basketball game. I find this picture funny though because it looks like Charlotte has her own computer. In due time, I am sure this will be a reality.


Doesn't it look like she is rolling her eyes at him here? The attitude is starting already! I think it is one of the many things her big sister is teaching her.


News Flash! You may not have known, but we have a dog! Unfortunately, after three kids, our sweet Sophie has been knocked down a few notches on the ladder of importance in our household, therefore she hasn't made the blog yet. 


However, she continues to be a great family pet, loved dearly by all of us. She is fantastic with the kids, and even though a bit spunky at times, experienced black lab owners have assured us she will settle down as she gets older (though she is almost five...shouldn't that have happened by now?!?!).

*Charlotte is fighting a cold, which is the reason for the watery eyes and red cheeks. We are praying she gets better soon, as her surgery is scheduled for Monday!

Finally, this afternoon I taught my 82 year-old grandma how to use her new iPad. It was pretty neat. I hope when I am her age I am willing and able to do something so unfamiliar and different with the same confidence and excitement she had today. So, Grams, I hope you figured out how to get here and read Charlotte updates! And if not, keep trying, it gets easier. Thanks for being such a fun, loving, and caring grandma/great-grandma. We love you!

Have a good weekend everyone!

Wednesday, March 23, 2011

Crawling

My lil' rock star is getting close to being mobile!

video

Her favorite things to "crawl" after? Remotes, cell phones, and Wii controllers. Doesn't get much more 'typical' than that.

Monday, March 21, 2011

World Down Syndrome Day

Today, 3/21, is World Down Syndrome Day. The date, 3/21, represents the 3 copies of the 21st chromosome which makes Charlotte and people with Down syndrome all over the world a little bit different than those of us with only two of the 21st chromosome.


9 months ago, our daughter came into our lives and changed our world. And though her bonus chromosome knocked us off kilter for a bit, Charlotte reminds us daily that life is so much more than one's genetic make-up.


I have spent the past 9 months immersing myself in books, blogs, message boards, and any information I can get my hands on, in order to make my daughter's life as easy as possible for her. And while I am still relatively new to this journey, I know that Charlotte has and will continue to make me a better person.


World Down Syndrome Day is about acceptance and improving the lives of those with Down syndrome. I have found the first step to acceptance is knowledge. So today, I am asking you to take just a few minutes and educate yourself about Down syndrome.


I want for Charlotte the same things that I want for Katherine and Will. To be happy. To be loved. To be accepted for who they are and who they want to be. I would never tell my older kids that they can't achieve something, because I truly believe they will be able to accomplish whatever they dream. The same holds true for Charlotte. Dream, baby girl, dream, because you can and will do it.


I have listed a few links to good, up-to-date information about Down syndrome. Like most things, there is a lot of outdated misinformation floating around on the web. You might be surprised that many of your perceptions of people with Down syndrome may be wrong ;-).

Myths and Truths about Down sydrome
Down syndrome facts

Wisconsin Upside Down (local DS group)

Videos:
World Down Syndrome Day
Dreams



Happy Monday everyone, and feel free to spread the knowledge!

Sunday, March 20, 2011

Knots

Thursday I got a letter in the mail indicating Charlotte's cardiology appointment had been moved to next Friday (it was supposed to be in April). This concerned me for two reasons; they hadn't called and asked me if we were able to come in next week, and second, the appointment was now scheduled at the same time as her pre-op appointment. After calling plastic surgery, cardiology, and central scheduling, I was able to find that we needed to see the cardiologist before they cleared her for surgery, and she would need to have a sedated ECHO. At 5:15 on Thursday night I got a call asking if we could we come in the next morning at 9:15. Nice. This is when the knots in my stomach started.

I come by the "worry gene" honestly. My family is full of worriers, me included. The combination of this inherited trait and my past experiences at the cardiology clinic make for an uptight mom. I woke Charlotte up at 4:30AM for one last feeding, Kate came over early to entertain my older kids, and Charlotte and I  left for the hospital. Luckily the eating restrictions really don't seem to bother my laid back 9-month old.

Every time I walk into the Herma Heart Center I am reminded of our first appointment. Charlotte was 5 days old, we were 4 days into dealing with the Down syndrome diagnosis, and we were there to have a precautionary ECHO; just to make sure her heart was healthy. We were assured it probably was, as the pediatrician couldn't hear a murmur and there wasn't any sign of a heart defect on my 20-week ultrasound. At that time I knew nothing about cardiac problems in babies, so I truely believed those two signs pointed to a healthy heart. Oh, how hindsight is 20/20. Since that visit, the knots in my stomach start before I walk through the door.

I love our cardiologist, however she is very cautious and likes to be very proactive. She does a fantastic job of explaining things and making sure we understand what is going on. These are all great traits for a doctor to have; especially the one caring for my daughter's cardiac health. However, at times, she can make the knots in my stomach worse, as she explains all the "could happens" to us. This appointment was no different, as she came to see Charlotte before the ECHO and explained the reason for moving the appointment up. They are keeping an eye on Charlotte's mitral valve, because after surgery she still had some mild leakage, and if it gets worse, she could require medication and/or eventually another surgery to replace the valve.

The ECHO started an hour after it was supposed to, took an hour and a half to complete, and was done by a doctor. I was concerned about the length of the ECHO because they usually take about 30-40 minutes and are done by a tech. This made the entire time they were doing the ECHO a tad bit nerve-wracking for me; especially when the cardiac radiologist came in after the first doctor was done to get a few more pictures.

To make this long story a bit shorter, the ECHO was fine. The cardiologist told us she still has mild leakage, but it hasn't gotten any worse. The nurse told me afterwards that the doctor who did the ECHO was a first year fellow and this was one of his first ECHOs he had done by himself. Information that would have been nice to know before the procedure, it would have saved me quite a bit of worry.

The cardiologist told us she would see us back in a year (yay!)and to enjoy Charlotte and expose her to all our older kids do, as they will be her best teachers. I found this advice funny, because it is so true.

Learning to play video games....

Reading books with her siblings
Now that the stomach knots are gone for a bit, we are enjoying a laid back weekend. The knots will be back soon though; a week from tomorrow is Charlotte's finger surgery. I am looking forward to putting that behind us as well, and hopefully enjoying an uneventful spring and summer. A big 1st birthday bash is already in the works for June.

Thursday, March 17, 2011

Night Owl

I posted this picture on Facebook, so I apologize for the repeat, but it was too cute not to share it here as well. Mike and I went house-hunting last night, and Missy was kind enough to watch all three of our children (have you ever looked at houses with 3 kids in tow? Counterproductive!). We ended up being out until after eight, and didn't get the kids home until almost nine. Charlotte fell asleep snuggling with Missy, and when we got home, was raring to go after her nap. Mike and I couldn't believe how wide awake and active she was....rolling from one corner of the room to the other, laughing and giggling, and practicing her "crawling moves."

*I apologize for the quality of these pictures, I took them with my cell phone.



She was finally ready for bed just before 11PM. Yikes! She did sleep until 8:45 this morning, when I had to wake her up to leave for preschool drop-off.

And because I am posting cell phone pics, here is a cute one from the other day, her first experience with steamed peas and carrots. She loved them! She has been boycotting baby food vegetables, looks like she just needs the real thing!

Wednesday, March 16, 2011

Spring has sprung....well, almost!



*Charlotte was napping while we were out playing, I promise to post some Charlotte pics tomorrow!

Saturday, March 12, 2011

There is nothing better....

than bedtime. Something about snuggling up with my babes, and reading stories.....


The older kids fight over who gets to turn the page, who gets to sit next to Charlotte, and whose book will get read first.

But these are the moments that I look forward to. Baths, books, songs, and hugs & kisses.


Good night everyone. Sweet dreams.

 

Wednesday, March 9, 2011

3/4ths of a year!

Happy 9-month birthday my sweet baby girl!!


In some ways the last 9 months have flown by, in other ways I don't remember what life was like without Charlotte in it.

Thank you my dear girl, for changing me and our lives for the better.  There isn't a day that goes by that you don't make me smile. 
Charlotte, 9 months, 27.5", 15#8oz
  

And, because I love looking back and seeing which of my children resemble each other at different ages, here are pictures of Katherine and Will at 9 months. 

Katherine, 9 months, 28", 16#1oz
Will, 9 months, 30", 18#12oz


Monday, March 7, 2011

Happy Birthday Grandma Liz!!

Today, my mom turns 60. Funny thing is, 60 sounds like a really big number, yet she doesn't act 60 at all.


My children are so blessed to have such a wonderful, young, grandma! We are so lucky for all she does for us.

And even though, she is going to kill me for posting what few pictures I have of her (she usually hides when the camera comes out!), I wanted everyone to know how thankful we are for her.


She has been a rock in my life these 9 months. I know how hard Charlotte's diagnosis was for her; as she not only had digest all that was happening with Charlotte, but she also had to watch her only daughter go through some really rough times. Having two daughters of my own, I can only imagine what it is like to watch them hurt, and not being able to make it better. I want to thank her for putting up with me during these rough times, as I tend to shut those I love out when I am stressed and worried.


 Thank you for being a wonderful grandmother and mother. We are so lucky to have you. Happy 60th....don't dwell on the number, numbers mean nothin'.


And really...60 is the new 40.

Thursday, March 3, 2011

Wordless Thursday?

I know it doesn't have the same ring as "Wordless Wednesday", but I felt bad that I had so many words yesterday and no pictures. Here are a few pictures of my darlings....


*you can tell they are sisters in this pic! 

Wednesday, March 2, 2011

Spread the Word to End the Word

A couple months ago, I was shopping with Charlotte at a local store. I went into the dressing room to try on a few items, the attendant looked at Charlotte and asked me how old she was. I smiled, responded, and turned to walk back to a room. However, the attendant, looked back at Charlotte, then again at me and "Yeah, one of the associates here had a baby a couple months ago and it turned out to be retarded. It is so sad."

I was in absolute shock. My stomach sank, I immediately felt lightheaded, and all of my senses seemed to leave my body. I didn't say anything else, just walked back and sat in the dressing room. I stared at Charlotte for a few minutes, with tears in my eyes, and tried to interpret exactly what happened. I am pretty sure the dressing room attendant had some sort of disability herself, and after talking about it later on with a friend, I came to the realization she probably had no idea that what she had said was offensive, and was only taking a recent experience she had with babies and trying to relate it to me. I don't think she meant any harm, in fact, I don't even think she knew Charlotte had Down syndrome; but boy did it hurt.

Lets face it. Words can hurt. The word "retarded" and "retard" HURT. Why? Because the word has evolved to hold a very negative meaning. People use this word and forms of this word to talk about negative things. Using the word in any context is not okay, and is very offensive. Legislation has been passed, and the r-word is no longer used in any legal documents. "Mental Retardation" is a term of the past.

I dread the day that someone calls Charlotte retarded. I dread the day that someone calls Katherine and Will's sister a retard. I hope that through awareness and education, this day won't come.

Today, 3-2-11, is "Spread the Word to End the Word" day. Please visit this website and sign the pledge, to end the word. If you could also share the link on your facebook page that would be great.

Also, since my experience in the dressing room, I have thought at length about how I would respond to a situation like this in the future. I am ashamed that I let this go (I was a little shaken up at the time!), because I can't do my part to promote awareness if I don't use opportunities like this to educate.

Tuesday, March 1, 2011

The therapy game.

Last week I blogged about Charlotte's Developmental Follow-up at the heart center. One of the recommendations in the report from the doctor was to increase PT to twice a month (currently she receives PT once a month) and add short-term OT after her hand surgery.

I emailed our Birth to Three coordinator the doctor's recommendations, and immediately received a response saying that the evaluation done at the heart center was not consistent with the one B-3 had done the month before. However, she would check into it and let me know.

Basically, it boils down to this. Outside evaluations done by therapists and doctors are always going to recommend increasing therapy. They go by the philosophy one can never have too much therapy. Birth to three looks more at the financial aspect of the therapy, however, I feel they evaluate a child using everything they know about that child, not just the skills they demonstrate during a certain evaluation. For example, at the heart center, Charlotte tested at a 6-month level (at age 8-months) for gross motor skills. This is because she cannot sit independently. It is very cut and dry. It doesn't matter that she has most of the skills required to sit, if she doesn't demonstrate independent sitting, she doesn't get the credit. Same with crawling. She doesn't crawl, true. Yet, she gets up on all fours (which is I am told is unusual for kids with low-tone at this age), scoots backwards, pivots in a circle, and pulls forward with her knees. These are all pre-crawling skills, but because she isn't crawling, no dice.

Being in the education field, I know to take the "black and white" of evaluations with a grain of salt. The evaluators are taking a 10-minute snapshot of my child and telling me what she needs. Charlotte's extra chromosome pretty much guarantees her a childhood full of different types of therapy. As a parent, I have been told I will need to push and advocate in order to get Charlotte the services she needs.

This brings me to my dilemma. What does she need?!? Right now, she is doing fantastic. I have said it before, and will say it again, Charlotte is a rockstar. I know I am biased, however I am blessed to have a huge base of friends and family in the education and therapy fields who will not hesitate to let me know if I need to take off the rose-colored glasses and get my girl some help!

I am having a hard time subscribing to the "Your child has Down syndrome, so she is not going to do....." theory. YES, my child has Down syndrome. YES, my child has low-tone. However, if my goal is to keep her life as typical as possible, I need to get past these generalizations and see Charlotte for who she is, and not look at the effect that 47th chromosome is supposed to have.

Which means for now, I'm not going to push for more. After taking into consideration what the professionals tell me, I am going to go with my mommy gut on this one (and of course Mike and I have discussed this at length as well; I don't want everyone to think he doesn't get a say in this, he is a very active part of our children's lives!). The second I see Charlotte not progressing, I will be on the phone playing the therapy game. Until then, I am going to continue to let my girl impress me, all by herself.