Monday, June 6, 2016

Baby Christina and Music



Once again, I find myself blogging about our sweet little Christina. I just can't help it! How could she not be your favorite! While I, of course, love Claire and James to the moon and back, they are boring, normal developing children! All kidding aside, Brian says I can't just blog about baby Christina and that I need to balance out my blog topics with other things too! (But honestly most of the people that read my blog only care about what baby Christina is up to anyway!)

For those that knew my brother James or ever came to my house growing up, you would know how much he loved music, and especially opera music, no, especially male vocalist opera music. He liked other music too, but that was by far his most favorite.

Our sweet little Christina also seems to have an affinity toward music as well. We have had her listen to all different types of music from contemporary to the classics. And like my brother she clearly has her favorites.

She does not like current music like Taylor Swift or really anything on the radio these days. She likes religious music, especially The Mormon Tabernacle Choir. She also like opera like my brother James. But what we have found to be her favorite thus far is none other than Karen Carpenter!


She will sit (or lie) and listen to The Carpenters for hours! Sometimes just relaxing and other times you see her swaying to the music. I grew up listening to The Carpenters so it is at least music I like and can tolerate listening to on a loop! Because Christina's life is simple and diminutive it brings such joy for her to have things that she loves and enjoys.

video

And since we've been listening to The Carpenters on repeat, I just keep thinking about how sad that Karen died at such a young age. I have thought about writing her brother a letter or sending him a video of baby Christina listening to Karen sing so that he and his family can know how her music has blessed my sweet Christina and that over 30 years after her passing people still love and adore her music. I just don't want to seem like a creepy fan! Your thoughts? Creepy or showing appreciation?


Tuesday, March 29, 2016

Easter and Finding Hope

Easter weekend was a fun mini family reunion on Brian's side of the family in beautiful southern California. The grandkids had lots of fun festivities and I don't think I saw James for more than five minutes the entire time, he was off running and playing with all his cousins non-stop!

I have always loved Easter and since the birth of my sweet baby Christina I have such an increased love of Easter. 


This Easter weekend, while we were away from home Christina got very sick with a stomach bug. Claire had this same sickness last week and it just slowed her down a bit and she took a few longer naps. However, when Christina got the same sickness, it reared an uglier head, as it usually does with her. We almost needed to take her to the hospital, which we desperately try to avoid, but at times is necessary. We had a few hour window where if she didn't turn a corner we would need to take her to the hospital for an IV and anti-nausea medication. Luckily, she slightly improved such that I knew I could slowly hydrate her without the help of an IV and nurse her back to health. Christina spent nearly the entire weekend in a crib in a very dark closet where I would come and check on her and cuddle her and hydrate her every couple hours. Christina pathetically sick in a closet juxtaposed with my other children happily and healthily playing outside can be hard on me as a mom. I struggle watching my little Christina suffer and I feel such happiness that my other children are doing so well. 


My sweet sister-in-law shared something with me last year that I have been reflecting on this Easter season, I have especially thought of it this weekend watching James and Claire play outside the entire time with their cousins. 

This is what she shared with me:

I had a dream last night where all the family was together and I was having a great time playing with baby Christina out on the grass. She was standing, walking on her own, and she was smiling and laughing hysterically. Both of her eyes were open in the bright sunlight and she just seemed so happy. I had such sweet feelings during the dream and it made me think of you all.Just thought you might like to know. smile emoticon

This dream she shared with me brings me such happiness and hope. I know that this life is not the end. I know that because my Savior, Jesus Christ lives, we too will live again in a perfected body. 

This my seem like a non sequitur, but I love Carrie Underwood's music, and there is one song in particular that pulls at my heartstrings when I think about baby Christina. (Well, most of her music does!) The song is called Temporary Home. And try not to cry! Even I cry when I listen to this song!


And on a lighter note, here is a bunch of pictures of all the fun Easter festivities!

We had reptiles (and arachnids) come visit!





Brian playing the python tuba! 


And I feel like my blog is a bit of Where's Waldo and trying to find my cans of Diet Coke! Or more fitting would be Mercer Mayer's Litter Critter books with the spider and the grasshopper but replace the grasshopper with a Diet Coke!




Bow and arrow shooting!



I was awesome like Robin Hood, splitting arrows!


And a traditional Easter egg hunt!












He is Risen, by Del Parson

Why seek ye the living among the dead? He is not here, but is risen.
Mark 24:5-6

For God so loved the world, that he gave is only begotten Son, that whosoever believeth in him should not perish, but have everlasting life.
John 3:16




Tuesday, March 8, 2016

FAQ - Baby Christina



With our sweet little Christina we receive lots of questions from lots of people; friends, family, and even strangers. And we welcome all questions and are happy to answer them and we don't easily get offended! I thought I would answer the questions I get asked the most often because I think for as many people that do ask, I think there are many others that notice her and don't ask, whether they are too nervous or don't know how. So don't be scared to come up and talk to us! We don't bite! (She does drool a lot though...) We are very open and happy to talk about our sweet Christina and after about two minutes with her you will be in love too! 


What is her diagnosis?

I could spend an entire blog post explaining Christina's and my genome microarray and I would likely bore all of you. (Maybe a few people would find this interesting, if so let me know and I can do that!)

But as simply as I can, the name we give it is Trisomy 2q. There is no syndrome name or anything like that. As briefly and simply as I can describe it, in every cell Christina has an extra part of her chromosome 2 sitting on her chromosome 13 where some of 13 was deleted. This specific trisomy only runs in my family and she is currently the only one in the world who has it. (My brother James was the other person!) When you don't have the exact right amount of chromosomes problems occur. In Christina's case this resulted in physical abnormalities and severe mental retardation. 

Did you know you were going to have a handicapped baby?

Yes we did. I didn't have an amniocentesis with Christina (where you can test the chromosomes). With Claire I had an amniocentesis and we knew she was chromosomally a female with a balanced translocation even before she was born. So with Christina we didn't have it on paper officially that she had trisomy so I suppose we were only 99% positive. From ultrasound we saw lots of problems and red flags. And since I knew I was a carrier we knew it was a 50/50 probability. The moment she was born and I saw her face I knew for certain she had the trisomy.

Is she blind?

She is not blind, but is likely legally blind. She obviously sees light and it appears as though she sees others things as well. She notices things that have high contrast like a bright pattern or things that are moving. She sometimes looks at her hands or other things in close range. I also think she sees and recognizes our faces but its hard to exactly tell since she clearly recognizes our voices and that may help her determine who is who. 

What is wrong with her eyes?

Lots of things!

She was born with glaucoma. Which is the failure to properly drain fluid from the eye so fluid builds up and causes increased pressure. From what I understand about glaucoma there is a channel between the iris and the cornea that allows for drainage. In most cases of glaucoma this channel is blocked or in children it can be underdeveloped. In Christina's eyes the channel doesn't even exist. She has had several surgeries to insert very small tubes to artificially drain the fluids. She also has several eye drops to help alleviate high pressure. At this point, the tubes in her eyes have developed scar tissue around them, causing the tubes to lose some efficacy. 

Christina also has abnormally large eyes and the build-up of fluids doesn't help! She also has abnormal facial features, including small eye sockets. So with this combination her eyes bulge out. When she was little she slept with them wide open and at one point she greatly scratch her right eye and caused some damage. We put lubricating medicine in her eyes every few hours to keep them from drying out. She also has her right eye partially sutured closed to help prevent getting too dry. Her eyes still don't fully close when she sleeps but they close much better than when she was younger.

My brother James ended up losing his right eye due to lots of damage from glaucoma but his left eye was in good condition. Her right eye also appears to be in worse condition then her left but her left eye is also not good. Our goal is to preserve her vision and the actual eye its self!

Why does she hate the light?

The glaucoma causes her to be light sensitive. But her extreme light sensitivity is not fully explained by the glaucoma. What is funny to me is I also have sensitive eyes (in every family photo taken outside my eyes are always squinty or closed!) so I didn't help her any in the eye department!

Will she always have a feeding tube?

Probably. At this point she only eats from the feeding tube. When she was born she drank milk from a bottle but it was too hard of work and she was unable to grow. She now would be strong enough to eat orally, but because she was fed from a feeding tube she started to unlearn how to eat and now she doesn't like food in her mouth. We are working on training her again, but its hard because she still doesn't sit up well and she will fight you and gag with food in her mouth. We are okay with her to have the feeding tube, it has been such a blessing for her and for us. But we would like her to supplement with food orally. We think she could learn to like certain sweet, yummy foods that could be enjoyable and fattening for her! 

Will she walk? 

Yes we think so. It may take a few more years. She has physical therapy and she needs to work on general strength training. But in time she will walk. She has scoliosis and tight hips and joints that will keep her from walking normally but we are confident that she will be able to uprightly walk - probably with an odd gait - from A to B that are in close range. 

Will she talk?

Probably not, but we don't know. My brother, James, never spoke. So that leads me to think no. Her severe mental retardation mixed with her partial hearing loss doesn't encourage the development of speech. 

How long will she live? 

We have no idea. The only data point we have is my brother who lived until he was 19 years old. Christina does seem to be more frail than he was. I wish I knew the answer to this question. I remember when the doctors finally let us take her home from the NICU, I said to one of the doctors I just don't know what to expect with her. And what he said wasn't very helpful... He said, "she might die in the car ride home from here or she could live to 65. We really just don't know." 

For someone who is a planner like me, this is very frustrating. I usually can cope quite well with difficult situations. But of all the things we have to deal with Christina, this particular thing of not knowing is my most challenging thing. I would just like to know what I am coping with. Is it a sprint or a marathon with little Christina? I am happy with either situation, I'd just like to know which one it is! But, ironically, now I am coping with NOT knowing. If she were to die tomorrow, we would be sad but we would be okay. We love her and enjoy her life as much as we can and we are at peace no matter what happens. The planning side of me worries about if she does live into adulthood and were to survive Brian and me. Luckily I know a really good estate planning attorney (wink wink, that's Brian!) to set up a special needs trust to make arrangements for her. 



And just look at her tolerating all this sunshine!





Monday, February 29, 2016

My Mini-Me





Brian has James as his "mini-me," so I'm happy to have Claire as mine! She is bald (with a baby mullet in the back) and beautiful! Claire is so fun and spunky with a good nature. And I'm not sure if I should be proud or terrified, but her personality is already quite similar to mine. She doesn't talk yet, but she knows how and loves to interrupt with her jabbering. If Brian and I are having a discussion (probably on something controversial!) Claire will come up to us and get between us and join in the conservation. She talks louder and louder to get attention and to make sure her point is getting across. Just like me!


I left my Diet Coke within her reach and she feels quite entitled to sips! She will also go through the trash to find Diet Coke cans and drink the very last drops! I am told by my mother and grandmother that I did the exact same thing. No huge surprise!

 



It is a true delight to be her mother! 


Friday, February 19, 2016

Renovations to New Home - On going projects


At our house right now we have a couple on going projects that are at started but not completed. This drives me a little crazy and this was what I was concerned about with buying a fixer-upper. But ultimately, I love that we will end up with exactly what we want. But choosing exactly what we want can be tricky. We want to do it right and only do it one time and not have to go back and re-do things because we took a shortcut or were too cheap. But we also are cash flowing every project and don't want to overextend ourselves. And these mentalities explain why our floors are not done yet! (And because we haven't agreed!)

So as I mentioned the flooring is an on going project. And no real progress has been made!


The problem we are also running into is that there are projects we want to do that can affect the floor, so demolition needs to be done before we do the flooring or we could run into major issues. For instance, we want to rip out these built-ins and put in something entirely different and more modern. But it needs to come out before we do the flooring, because we aren't ready to pay for the new built-ins we want, we need the flooring to go all the way to the back wall. For now the spot to fit those old projector TVs is where we park Christina's wheelchair. Brian and I are itching to take a slug hammer to this! (The built-ins, not her wheelchair, that would be mean.)


Another project that is currently mid-way and needed to be demoed now for the flooring is our pantry. We took two small closets away and are going to make them into one big pantry. The goal is something like this:


Brian made me break through the wall, like we were on Property Brothers, and then he and James finished the demo up. I'll admit, it was a little fun. And we knew there was a mold problem between the two closets from the previous owners' broken hot water heater. So this was a good way to get behind the drywall and get rid of the issue entirely. And James got to help pull up nails and do some "man work" as he calls it. (We have a few sexist phrases/ideas we are working on reshaping with him!)




video

And our last current mid-way project on the interior of the house is our laundry room. The laundry room was the room that housed the previous owners' various cats and small rodents. I cleaned and cleaned that room and no amount of bleach could get out the horrific smell of cat urine. The wood in the cabinets, the linoleum and all the base boards were soaked in it. So after my failed attempts at cleaning it, we just took it all out. For budgets reasons, we were planning to tackle the laundry in a couple years (like all the bathrooms as well) but due to the smell it needed to be expedited. We had tile left over from our old house installed and it looks great. But the room still has no baseboards and no cabinetry and sink. But it also has no bad smells! So this project is on hold for now and we aren't in a big rush to finish it since it's functional and clean. Our plan is to do cabinets, counter and a sink (and finish the baseboards and painting of course). The goal is something similar to this:



And now it's the landing place for all the things that were in the two demoed closets. But the tile looks nice!



And if anyone has good tips on surviving ongoing remodeling projects I am happy to hear them! And how did you prioritize which projects happened first and which ones were sent to the back-burner?

Wednesday, February 3, 2016

Comments at Costco



Lately I have been taking Christina out of her car seat when we go out and about on errands and appointments. She has started to get annoyed about being in her car seat but when we take her out she doesn't really sit-up well and she loathes the light. But she seems to prefer dealing with the light over being in her car seat, so I've been letting her out more and more. She has been doing surprisingly well! We tried for the first time at Costco the other day and she did wonderfully! No crying, just hanging out and cuddling up to Claire.

But while we were at Costco, I realized why else I like her covered up in her car seat---people talk to you less! Even when she was in her car seat in the stroller or shopping cart and Claire up front, people still ask questions and wonder if they are twins, etc. But I don't always have to go into detail about little Christina and her entire health history. I can usually skirt by with quick responses. But on this occasion both girls were clearly visible and we were visible targets! I was barely through the door when a woman left her cart in the middle of the aisle to come talk to me about my girls. “Oh no!” was my immediate thought. And this was the conversation:


Nosy Lady:
Are they twins?!


Me:
No they aren't; they are a year apart.


NL:
Are you sure? They look the same age.


Me:
I'm quite sure they are not twins.


I mean, really?! I birthed them! So we continued shopping and we had many sweet and far more normal comments and questions. I mean they are so cute! But as we left we had another comment that had my head reeling. When we reached the checkout line (with wayyyy more things in my cart than I had come in for! I only needed diapers and milk, but I spent over $150… Costco is way worse than Target! I never leave Costco without spending at least a hundred bucks!). 

So in the check lane, the woman packing my cart says:
What a sweet doll your daughter has!


Me:
That's my other daughter. I have two girls.


Check Out Lady:
Oh…



But to the check out lady's credit, Christina is very still and little and doesn't sit-up normally. (But she is breathing!) She then asked if she was okay with a very concerned face. And then I had to go into how Christina was fine and actually quite happy! That she isn't a doll but a little handicapped girl with health problems and so on. I was in a pleasant and happy mood, so I was fine to chit-chat with random people about my little girls. 

But what about the days when you are in a grumpy mood but you still have to get milk and diapers? What do you do then!? Do you react snippy and short or do you go into lots of detail about their life and medical history and even include your own provocative history. (Because people shockingly ask!) Do you fake a smile and give a simple response? I try really hard to pleasant and upbeat, but sometimes you just want to be snarky to people! But I would prefer people ask questions rather than just stare or misunderstand the situation.



PS
Isn't it so great when kids will watch television when you need them to! This was Claire in the zone at the doctors. I know TV isn't developmentally the best, but it can be such a help at times!






Monday, January 25, 2016

Christina's Heart & Ears

Recently Christina has developed a couple new problems. One of her issues is potentially serious and the other is a quality of life concern. The serious concern is that she has developed atrial fibrillation and tachycardia. Basically this is a rapid and irregular heart beat. She was born with heart defects (several holes), but she was asymptomatic until recently. The atrial fibrillation comes and goes. At times she will go days and weeks without an issue. And then like last week, for instance, she was going in and out of fibrillation for a couple days. When it happens she is completely miserable and even holding her doesn't seem to comfort her. Our concern is that this puts her at higher risk for heart attack or stroke. We are obviously concerned about this but only to an extent. It's just one of many issues she has.

Her other new problem is that she is developing hearing loss. Her hearing was tested at birth and it was fine. She now has high frequency hearing loss, which is speech and hearing consonant sounds. She will most likely be non-verbal due to her low IQ and now not being able to hear speech. She can still hear things, and luckily she was born to a very loud mother so she can hear me, her favorite person! She can also hear music and she seems to really respond to and delight in music. In church I am the pianist for the children's primary. And many Sundays I will take Christina with me and she will sit right up to the piano and just be in heaven! It makes me grateful my parents made me learn to play the piano!


And here are other just cute recent pictures of Miss Chris. She is so hard to photograph since she hides her cute face most of the time. So on the rare occasion she lets us see her face I try to snap a few!