Wednesday, February 18, 2015

Milestones, Surgery, and a Positive Feedback Loop

Christina has been so clever lately! She is so motivated to do "normal things" like sit up and stand up. Because of her mental retardation and low muscle tone, these milestones have been delayed. Also we believe that her hatred of the light has impeded these developments, to an extent, because she avoids lifting her head to shade her eyes. But even with all of these disadvantages, she still has a strong desire to reach normal physical milestones.

She uses the bed frame to hold her head up against for support. She did this all on her own! She's brilliant!

In conjunction with the downward dog yoga pose to which she is partial, she also likes this sitting position. From this position, she will put her hands on the ground and push up -- lifting her head as high as she can, and holding the position for as long as she can. You can see how much she is straining to be able to do this! She is so motivated and hard working! When I work out at the gym, I always quit before it gets that hard for me! 

This is her version of downward dog. Her balance is amazing! She is balancing on one foot and her head and putting that other foot in her mouth! She recently had another eye surgery for the glaucoma in her right eye. Both eyes have glaucoma, but her right eye seems to be the eye that struggles the most. (The right eye is also the eye that my brother James ended up having removed. Clearly a trait of our Trisomy 2q.)

She's not always fond of her stroller. It helps her develop core strength and sit up right. 

Brian got her to calm down and enjoy her stroller! 

This was a huge milestone. She was able to stand a few times! We placed her here against the ottoman and got her legs stable underneath her and then she held this position for about 30 seconds.

Christina's grin with double dimples is just so delicious. I could eat her up! 

I love these two together! Since Claire was born it seems that Brian and Christina have created their own positive-feedback loop with each other. Before Claire was born, Christina preferred me over Brian. It wasn't that Brian did anything wrong or wasn't attentive, but more like how a nursing baby clings to their mother. But once Claire was born, I actually had a clinging, nursing new baby. And Christina must have realized that the attention I could give her was much more limited. Because of this, it seems she started to take more of a liking to Brian. And in turn, she became much more fun to Brian. Who in turn could get her to laugh more, and then Christina would be even more adorable and Brian would then find her that much more delightful and the cycle continues! They have become such peas in a pod!

Sunday, February 15, 2015

Claire from 1 to 3 months

We feel so blessed to have sweet Claire in our family. Her personality is already shinning through at just a few months old! She is a very content and happy baby. She does, however, cry more than James and Christina ever did. But on the other hand, those two like never, ever cried, so I think we had abnormal expectations! She loves to be in the Björn like her big sister, but Claire likes to face outward and look all around (unlike Christina who burrows her head into my neck to hide her eyes). Claire loves to be held, but not really cuddled. She likes to be held facing outward, like in the Björn. She only cuddles when she's nursing. And nursing is also something she really loves! (As you will see by how progressively chubby she's gotten in the photos below!) Claire is such a chatterbox and she squeals and sings like she has very important things to say! She must get her chattiness from me! She is an amazing little sleeper, I almost hate telling other new moms when they ask about how she sleeps because she sleeps so well! She averages between 10 and 13 hours of continuous sleep in the night, which has been such a saving grace for me because I get especially crabby (crazy) on little sleep!

Is that a double or a triple chin?

We got Claire's ears pierced! I knew I was going to get them done, since I love little pierced ears. I was planning to wait until she was about 6 months old, but we had her in this super frilly dress at church and I just kept looking at her in this dress and all I could was James in a dress. And I felt she needed some feminizing! 

Oh that grin just kills me!

And that belly! But surprisingly, she is slender compared to James as a baby. This is James and Claire both at three months. They look awfully similar! James was fatter of course!

Thursday, February 5, 2015

We're too Poor

Several months ago I wrote a blog post about our finances, so I thought I'd try out another one! Since we are forging our way toward being debt-free (and/or moving and buying another house) money is a common topic in our household. And lots of these conversations have been teaching James about money and it's value. What started off as partly a joke and also a matter of convenience was Brian and me telling James we were poor and that's why we can't buy "x". It made it easy when we'd be at Costco and he wanted that cool new toy and we'd just say, "Oh, that looks super fun, but we're too poor." And it worked, James would nod and move along. But as time went on James would tell other families we were poor and even go as far as to ask my mom if they were poor too, like his parents! Part of me was so proud for our successful indoctrination of our child! But this also got me thinking.

Along with teaching James we are poor, we have also been trying to teach him about work. We talk about how work allows us to buy things that we need and want. We talk about how working harder and longer equals more money. We talk about how dad goes to work and works very hard to provide for our family. We ask James about what he'd like to do when he's older to make money. We give James chores to help him develop a work ethic. (This still needs a lot of work on our part! He whines a lot about chores!)

So my point in all of this is that I am now a little worried that we are teaching him mixed messages. James sees how hard Brian works at his job as well as with his church assignments. I try to make a point of this to James so that he appreciates what Brian does and to explain why Brian gets home late or has to leave again to go to church after getting home from work and so on. By showing James how hard Brian works and then saying we are "too poor" are we showing him a negative correlation between hard work and money? Am I overreacting and this is going over his head since he's only four years old? Is it a bad idea to trick your kids into thinking you're poor to help them not be spoiled? Brian and I are by no means rolling in the dough. We make a comfortable income where our needs and some (if not many) of our wants are met. I do think that being spoiled and entitled is more a matter of gratitude that can occur at any income level, rich or poor. So are there better ways of teaching children an attitude of gratitude rather than just telling them you can't afford it?

As a funny aside, there is a quote from Napoleon Dynamite that we say all the time in our house. To set the scene, Napoleon and Uncle Rico are shopping at some sort of grocery or corner store. Napoleon tries to get a box of assorted chips. Uncle Rico yaps, "Napoleon, you know we can't afford the fun pack. What, do you think money grows on trees in this family? Take it back!" Brian and I have abridged the quote to be, "We can't afford the fun pack!" when referring to anything that is out of the budget, whether it's a nice handbag I want or even more serious things like a house that is too expensive!

Monday, February 2, 2015

Be still and know that I am God

With the birth of each child, it seems our life has progressively gotten busier. Currently I am usually busy on the merry-go-round of feeding, changing, cuddling babies. This of course was expected, but no less hectic. One of my favorite passages from the scriptures is, "Be still, and know that I am God." (Psalms 46:10). I love this scripture because it reminds me to take a step back and pause. My natural pace tends to be fast, busy and on the brink of neurotic. Remembering this scripture helps me to actively search for quiet times for reflection or at least grasp onto the moments that do happen. You can't avoid all the chaos --- like the craziness we have on Sunday mornings since church was changed from 1 PM to starting at 9 AM!

The other day I took the kids to the park and James ran around from thing to thing and I stood by watching with the girls in their covered car seats in the stroller. It was such a beautiful, warm day with the sun shining. I also don't get out much in nature because of Christina's light sensitivity, but she was tolerating it on this day. (I cover her stroller completely with two blankets so no light can get in and even with that she is annoyed by the light, but can at least deal with it.) I remember standing there with the sun shining down on my face and I put my hand under Christina's covers to check on her and she reached out and held my hand. This experience was a seemingly sweet and simple one but its impact on me was much greater. I had this overwhelming feeling of peace and love. In this moment I felt the love of God in my life. I am so grateful I was able to slow down and enjoy this moment that could have easily passed me by.

Friday, January 2, 2015

Cute as a G-Tube Button

This morning while cleaning and doing laundry Christina was crawling (more like moving yoga poses) around on the floor. While she was playing her shirt lifted a little and revealed her button, her **Mic-Key button. It has been one year since she got her feeding tube. As her mother, I think it's a cute little accessory, just like her earrings. I have a hard time even remembering her without her button! Besides being cute, as a reflect, I see that her feeding tube has been such a blessing.

In utero, Christina was attached to the best "feeding tube" and even then she was still diagnosed as failure to thrive. When she entered this world she still struggled and struggled to gain weight.When she was in the NICU and after she was discharged, I pushed back against her getting a g-tube. We worked so hard with her to be able to eat from a bottle, but that ultimately became the issue, it was too much work for her and she began losing weight. So we decided for her to have surgery (which was scary all on its own since she only weighed six pounds!) to put in a g-tube. In the beginning, I was not a fan of her having a feeding tube. In the hospital they train you in a very medical way of how to administer a feeding. I am a quick learner and got it right away, but it was awkward and annoying and sooo impractical in the settings and ways I was taught. There was no teaching about how to do this if you are at the store and you need to feed your baby, or when your three year old wants to help, or what clothes your baby should wear, etc. It took some ironing out and just figuring out how to actually tube feed your baby in the real world. Now that we have a great handle on her tube feeding and now that Christina is thriving, I am able to see her g-tube as a blessing. Without it, I am certain she would not have made it. She would have withered away and ultimately died. Modern medicine is a blessing!

The reason why today I am especially grateful when I caught a glimpse of her button poking out is that this week our family came down with a severe cold/flu or something equally horrible. Christina went a 24-hour period where she was unable to keep any food or liquid down. At close to a year and half old she only weighs 12 pounds and every calorie we give her is measured and she cannot afford to ever have a deficit and especially not to be dehydrated as she was. She ultimately had to be hospitalized in order for her to get an IV and anti-nausea medication into her system. Even though I hate hospitals, I once again was so grateful for modern medicine in our lives. With help from the IV to give her fluids and the anti-nausea medicine, I was able to administer much needed fluids and food through her feeding tube. She was so weak and sick that without the feeding tube, I am scared to know how she would have been. Her feeding tube enables me (and Brian) to give her needed nourishment, which we were unable to do prior to her button placement.

Such a cute girl! And look at her opening her eyes in the daylight! Look at that sunshine pouring in! Very impressive for our nocturnal baby girl!

** For clarification, feeding tube, g-tube, button, Mic-Key button, gastronomy tube, etc. are all essentially interchangeable since I bounce around and call it different things at different times.

Sunday, December 28, 2014

Cuddling Sisters

I think it's too soon to say that Christina and Claire are bosom buddies, but at this point they are at least aware of each other.

On Christmas afternoon James was playing with all his Christmas spoils while the girls were cuddling with Brian and me on our bed. Christina was with Brian and Claire was next to me. Christina left Brian and purposefully inched her way over next Claire. It started off very sweet with the girls cuddling with their heads together. As time passed Christina got more "affectionate" with Claire, putting her hand on her face and then soon after her leg and then she tried to climb on her at which point they were separated! 

It's fun to see Christina interact affectionately with her sister. She interacts with James but in a more playful and laughing kind of way, and James is usually the instigator. So to see Christina actively interact with Claire is so sweet. I think they will be close little girls and it will be interesting to see the roles reverse as Claire grows up. For me, the hardest part about caring for Christina is that I always worry about her. It's not the long nights, or the around the clock feedings, or the constant medications. Her physical care just needs to be done, and while it can be tiring and seem difficult at times, I look at these tasks like the Nike slogan, "just do it". What really keeps me up at night (so to speak, because it is her feedings that do!) is wondering and worrying if she is happy and if she will be happy. And I often ponder how James and Claire will be with sweet little Christina when they are all grown up. At such a young age, James has already shown great kindness and patience with Christina that is beyond his years. So I hope that Christina will have forever friends in her siblings, at this point Claire and James. And seeing their kindness to her gives me hope that she will be happy and that helps me to worry less. 

Saturday, December 13, 2014

Claire's Blessing Day

We blessed sweet little (actually quite chubby) Claire this past Sunday at church. Claire's blessing day was a wonderful day that we spent with Brian's parents. We tried to snap a family picture before church since we were all in our "Sunday Best" because we haven't taken a family photo with Claire yet. But oh man, they did not turn out! For starters, we are not photographers and we don't have a great camera. And then to get all five of us cooperating and looking at the camera at the same time is nearly impossible! And none of us are patient enough to get a "perfect" picture. Brian and I have only a 5 minute limit of patience and the kids only have a 4 minute limit!

This is a complete tangent and I could probably do an entire blog post on the subject, but I think people get so caught up in trying to be and appear perfect all the time (and especially in social media). People make such a fuss trying to impress others they don't even know or often even like! I'm not saying that putting your best foot forward doesn't have any merit, but all the filters, Photoshop, angles, and taking 1,000 selfies to get one photo seems so silly and self-absorbed. I say just embrace the crazy and imperfection and additionally, "Ain't nobody got time for that!" I'm thinking of just framing one of our bad pictures we snapped because that best captures our reality. Okay, ranty side-note done. If you want more on the subject just let me know!

I love this picture the best (the one above)! It just says it all. James looking at the wrong camera, mom not paying attention, Christina screaming, Brian screaming in his head but trying to smile, and Claire just sleeping through it all. This is what life is really like!

This past week Claire had her baby blessing which was given by my husband. In the Mormon Church a baby blessing is given to a new baby to announce their name and to bless them with spiritual and other temporal attributes. Brian felt especially inspired to bless her with a love of service and especially service in her own home.

As much as I could remember, this was Claire's blessing:

Our dear Heavenly Father, by the power of the Melchizedek Priesthood which we hold, and in the name of Jesus Christ, we take this infant in our arms to give  her a name and blessing. The name which she will be known on the records of the church and throughout her life is Claire Eleanor Nelson. 

Claire, we bless you to understand the gospel and learn of it. We bless you to grow from your life experiences. We bless you to have the desire to covenant with our Heavenly Father. When you are able, be baptized and take Jesus's name upon you. Act as our Savior did.

We bless you to have charity and a love of service. Strive to be a righteous woman. Strive to keep the commandments and have the spirit in your life to guide you.

We bless you to seek to be like Christ which is possible through the Atonement. Strive to be like him.

We bless you to have a love of service. There will be many opportunities for service in your life. We bless you to love your siblings. You will be blessed as you serve within your own household. 

We give you this blessing, in the name of Jesus Christ. Amen.