Monday, December 14, 2015

Christina Update: Bladder Stones

Our sweet little Christina had a bit of a medical whirlwind this summer and fall. Amid our moving, selling and remodeling, Christina had some excitement of her own! Back in August I posted about her being in the hospital with a kidney infection and a series of UTIs that we could not get rid of. She would get sick and then she would go on antibiotics and feel better and once the course had finished, the infection would be right back but worse. This went on for several months. And she was seemingly miserable, as you could imagine the poor little girl! So to further investigate the cause we tested her kidneys and had x-rays done. It turned out that one of her kidneys had reflux which often can cause infection. This is what her doctors suspected they would find. What they did not expect was what was in her bladder!

This x-ray was what they took when they were looking at her kidneys. On the very bottom is a rounded out triangle which is he bladder. The bladder is supposed to be empty most of the time unless you have to pee. But Christina's was FULL of stones. From what the doctors have told me, this is very uncommon in someone that doesn't eat anything orally and especially since her diet is only baby formula in a g-tube. Just a few days after discovering the stones, Christina had surgery to have them removed and she did wonderfully and was home within 24 hours!

For those that like medical stuff, these are the stones. All 27 of them! They were the size of corn kernels up to the size of marbles!

These stones likely carried lots of bacteria and we do not know what the stones are made of yet. They must be made of a mineral (or something) from her formula that her body does not metabolize. We knew her metabolic rate and functions had issues, since she isn't really growing (She's still under 20 pounds. Well, she's probably even lighter now that those stones are out!) The next goal is to figure out what the stones are and if we can prevent them from developing again. 

Since the stones have been removed she has been so much happier and seems to play and sit up more. We imagine she was in quite a bit of discomfort and pain from them. But she is a happy girl again! (She still hates the light, so she's happy if she's in the dark!)

Tuesday, December 1, 2015

Renovations to New Home - Kitchen

Over the summer we bought a new house to better accommodate our family. We were sad to sell our first home, but we are happy to be in this next chapter. We love the bones of this house and the layout. But nearly every surface in the house we have already changed or plan to change in the near future. Much of the remodeling from the previous owners is frightening and must be fixed or taken out. Additionally the house was filthy from the previous owners and their pets. Before we even moved into the house the first things we did were to majorly clean the house, then we replaced the carpeting in all the bedrooms and then we gutted the kitchen to the drywall. After gutting and redoing the kitchen we moved in. But we still have lots of projects!

This was the kitchen when we bought the house. Though the kitchen appears to not be that bad in the photos, in person it was a very sketchy DIY project with very cheap materials.
Where possible we have tried to save money by doing what projects we can on our own. So Brian and my dad took on gutting the kitchen! It only took them a few hours!

I consider myself to be a very decisive person. I picked out my wedding dress after trying on two dresses and I decided I wanted to marry Brian after two weeks of dating him. (But I waited to propose until four weeks!) But I'll tell you, picking out kitchen features is way harder than picking a forever husband! We decided early on that we both liked a white cabinet kitchen so we went off of that. But there are so many choices to consider when doing a kitchen (materials, layout, style, size of island, type of appliances, flooring, lighting, hardware, water filtration system, pot filler or not (this was our biggest debate!), and on and on). And after agreeing on the white cabinets we didn't agree on anything else! We would "argue" looking over Pinterest boards and we went to the stone yard at least 10 times! These photos are mid-project (we hired this part out!)

And here is the almost done kitchen and the state it is in now. We still need to decide on pendant lights, flooring, paint and install (or rather have installed) the 200 pound hood vent. If you are curious about what we finally did decided on: white shaker cabinets, black granite on the outer counters and carrara marble on the island, marble back splash in herringbone pattern, and stainless steel pulls and appliances. 

Our next major project is the flooring throughout the house. All the bedrooms have carpet and the bathrooms have tile. We plan on doing some type of wood through the main floor of the house. It will happen as soon as we can decide! The picture shows the horrific floors as they are now. More to come on this.

Tuesday, August 18, 2015

Sweet "Baby" Christina

You know when you have those moments that just melt your heart? I am a person who never really had those moments until I had baby Christina. My friends and family "joke" that I am unemotional and that I need to try harder to muster some tears at certain occasions or at least pretend to! But I can say that sweet baby Christina has brought out a softer side of me that gets me embarrassingly emotional at times. What pulls at my heartstrings the most is when Christina and her daddy just cuddle and laugh and have an all out ball of a time!

These two pictures of her with Brian capture this perfectly. She just adores him and he adores her! And when I hear them just belly laughing together it makes me so happy. Not knowing what the future holds for my little Christina makes me worried at times but when I see moments like this, I know everything will be okay. And not in the sense that difficult things won't happen. Life is supposed to be difficult, but it is also supposed to be so happy and joyful. And Christina has shown me a large part of that spectrum from deep sadness to abundant joy. And just try to not smile when you see her sweet little face!

Lately, all we have been doing is gutting the new house that we bought and getting it ready for renovations. In the middle of this Christina ended up in the hospital with a kidney infection. I snapped this picture of her as she had finally turned the corner and was responding to antibiotics. She was a happy girl again! I emailed the photo to Brian as an update since he was at home with the other kids. His response surprised me because he said it was his all time favorite picture of her. I thought, "Really? She is covered in spittle and surrounded by a hospital crib!" He said it was his favorite because in this photo she reminded him of me. Specifically in that there is a twinkle in her eye and a smirk on her face as though she knows something really funny and is about to say something really sassy, just like her mother! 

I feel like if we could wipe away all of her physical challenges these three photos would still represent Christina. In this life she might be our forever sweet baby Christina, even at 30! But even with her baby demeanor and broken little body, her sweet spirit and fun personality shine through. I love that we can still see and get to know her.

Friday, July 10, 2015

Month of June in a Nutshell!

I've been the lamest at blogging, I know! I miss a few weeks and so much happens and then I don't know where to start. But that's how life goes sometimes. So this is what the Nelsons have been up to in a nutshell (And some pictures too, some even have Claire in them!):

We bought a new house and it's a bit of a fixer upper. (More to come on this!)

We have been getting our current house ready to sell.

James turned 5.

Brian turned 29.

Claire quit breastfeeding. (I forced her to nurse all of May and most of June but she finally got mean and impatient. And then I got mean and impatient and now she's on formula and bottles and everyone is happy again!)

Christina started to eat real food after being off food orally for well over a year. (This sudden change came from her watching Claire eat real food. I think she figured she could try that too! And she even eats like green beans and peas!)

And since starting to lose weight from back in March, I have lost a total of 8 pounds. The pounds have been slow going, but I'm still happy to have lost this much and I'm still pushing forward.)

Thursday, May 28, 2015

Superhero Babies & Cuddling Babies

James like many boys (and men alike) is big into all the Marvel Superheros. And his sisters get incorporated into his plots as he plays superheros at home. His current favorites have been Spiderman and Batman. But it seems he has liked all of them at one time or another. 

He spent a few hours one day making himself a Batman costume because I wouldn't immediately
 take him to the store to buy one. He then proceeded to make each sister a coordinating Batman headband.

Bat Babies!

And Bat-Bum!

After the girls ditched the Batman gear, Christina found Claire to cuddle with. It seems that Christina always makes her way over to Claire no matter where we put her! The other day, both girls were hanging out on the floor and Claire got upset and was crying. Before I had a chance to tend to her, Christina had made her way over to Claire and began softly touching her face and hands with hers. I can only assume it was to help soothe and give loves to Claire. Christina is such a sweet, big sister! 

Saturday, May 2, 2015

Claire at 6 months

What they say about the third child is true (Who's they anyway? I never know). We hardly take pictures of Claire, she gets dragged out of the house during her nap time, we put her on the floor for diaper changes, we give her things from off the floor, and the list goes on. I'm sure Claire is not the only third child to fall prey (We've been watching a lot of Planet Earth lately) to "neglectful" parenting. I was the fourth child of my parents, so who knows that they did or didn't with me and I turned out relatively okay. But seriously, does anyone actually buy those wipe warmers? Like even for their first child? I was never that nice of a mother!

And in case you are worried, we do feed her (like you couldn't tell from those thunder thighs!) She loves breast milk, sweet potatoes, and pinto beans (and apparently Diet Coke -- you can ask Brian about that one. Let's just say desperate times calls for desperate measures!) We do hold her and give her developmental "tummy time," etc. (Even though I think it is silly that doctors prescribe it because all healthy babies naturally do this anyway and learn to roll on their tummies whether or not you give them the prescribed "tummy time." Even Christina figured it out on her own!)

In all my picture taking of Christina we have managed to snap a few of Claire. But seriously, only a few!

I wouldn't say that Claire and Christina play together but Christina does like to climb all over Claire like a jungle gym and has been caught gnawing on her feet. (Claire is okay with the climbing, not so much the biting!)

Oh man, that ham hock is so yummy! And she loves her little lamb lovey!

I can see some resemblance between Claire and me in this photo (Yep, that's my dad). I think it might just be the big, chubby cheeks and turned-up nose though!

Friday, March 20, 2015

Weight Loss 2.0

Brian believes that I have little guile -- scratch that --  no guile. This is evidenced by his most recent post on Facebook in which he quoted me saying, "I'm not being critical, I'm just telling you that you are doing it wrong." Which by the way, I stand behind and do not renege. But I digress.

So back to my point, Brian thinks I have no guile and that I am slow to embarrassment. These traits are arguably bad traits, but at times can help others. I hope in this instance they can be helpful! Which brings me to Weight Loss 2.0. Three years ago I blogged about losing weight after my pregnancy with James but since then I have had two more babies which have caused weight gain. (I linked the previous blog posts about my weight loss if you're interested.)

Part 1
Part 2

So I am now entering my second edition of weight loss and I thought it might be interesting and hopefully helpful to some to bring you along on my journey as I start. I tried not to worry about weight loss for the first few months after Claire was born, but she is now 4 months old and I am ready to start! And back to me having no guile, I am not at all embarrassed to admit my weight, size, what I eat, etc. So I will share real numbers and figures and what I really am doing and eating to lose weight; my struggles and achievements. For me, it is helpful when people talk about starting and ending weights, achievable exercise plans and real-life eating (gluten and dairy filled, non-vegan, non-paleo diets). Enjoy this video! (And no offense meant to the few 1% of people that actually have diagnosed Celiac Disease.)

Weight Gain since 2012:

Before I got pregnant with Christina I weighed 130 pounds. During my pregnancy with Christina I gained 39 pounds. At her birth I weighed 169. I quickly dropped 24 pounds to 145 (15 pounds shy of my pre-pregnancy weight). But I quickly got pregnant with Claire, at 6 months postpartum, having not lost all of the pregnancy weight. During my pregnancy with Claire I gained 40 pounds, weighing in at 185 day of delivery. (Interestingly, I gained 39-40 pounds exactly with all three pregnancies, regardless of what I did!) So now I am 4.5 months postpartum and I have lost 25 pounds without actively trying to lose weight, but my weight loss has plateaued for about the last two months at 160 pounds. Which means it's time to start making it come off! I don't know if anyone else has had similar pregnancy weight gains and losses. I essentially gained 40 pounds and easily lost 25 of them before plateauing, just my starting weights differed.

Starting numbers:

160 pounds
5'5'' (I obviously don't think this is going to change, this for reference to my general size)
BMI 26.6 (considered overweight)
Size 10 in clothing

And here's a few awkward before pictures. (I always feel so weird when I pose for a photo.)


To lose 1-2 pounds per week
Lose 30 pounds by beginning of August
My end goal is to reach my pre-pre-pregnancy weight of 130 pounds

I am trying to be realistic and not too hard on myself about losing the weight. But I know I feel better when I am eating well, regularly exercising and of course fitting nicely in my clothes! I will do updates periodically with my progress!

Wish me luck! And if you want to join in with me, let me know. I love weight loss buddies!

Wednesday, March 18, 2015

My Little Bouncer

My dear friend gave us this bouncer and my little Christina has loved it! Claire likes it too, like any other 4-month-old baby would! But for me, it is extra fun to see Christina enjoy things since finding things she likes and responds to are hard to come by! For those that knew my brother James, I'm sure you remember how much he loved music. Especially opera music preformed by male vocalists. He would tolerate Lawrence Welk, church music, female opera singers, and a few others. But male opera singing was his absolute favorite. If you ever came over to our house, the music would be blaring in his room. Thinking about this makes me nostalgic for those times and also so happy that he had such joy in something. I pray that my sweet little Christina will find something she loves in her life. And seeing her play in this bouncer the past few days gives me hope that she will find joy in her sweet, diminutive life. 

And I thought I'd share a video clip of her playing, especially for those who haven't met little Christina so you can see just how cute she is!

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!