Keller Lately

Happy Heterotaxy Awareness Day! 

I figured this would be a great time to update everyone on Keller.  He's doing great! He will be four this month. (How is that even real?!)  His personality is really coming out more and more.  He is a perfectionist, he gets quickly frustrated when his toys/people don't do what he wants, he gives fantastic hugs and tells me he loves me at least ten times a day, sharing is a no-go, he loves to learn, if it is a stereotypical boy interest it has his attention, he is really into praying right now (the cutest!) and he studies things to figure out exactly how things are working. 

His annual heart check occurred last Monday.  He sat so quietly through the echo and EKG.  His heart looks good, he still has mild mitral valve leakage, which is what they are keeping an eye on.  The doctor told us 1 in 3 will need their valve addressed again, time will tell where Keller falls in that.  He will remain on his heart medication as it helps his heart contract.  The doctor also asked us about Keller's speech and development.  Keller is shy to start with and warms up more like an oven than a microwave, because of this, his doctor wasn't able to really assess his speech or development.  Keller actually speaks very clearly and is on par with others his age developmentally.  But we will keep a watch on it because his doctor mentioned that it is common for children who require heart surgery before age one to have a learning disability.  Again, no sign of this yet, but it's good to be on the lookout. 

His eating is what seems to be kicking our tails.  At the end of last year we changed GI doctors.  We had grown frustrated with the office in Greenville.  They didn't seem to be in support of the blended diet that we knew worked better for Keller.  They were looking to us to make the next call and while we know Keller best, neither Phillip nor I have ever gotten a kid off of a feeding tube. Our pediatrician pointed us towards Wilmington and we have been SO happy there.  The major difference? They listen to us.  Since Keller has been on the blended diet his vomiting has virtually ceased.  We are feeding Keller using his feeding tube twice a day only.  He gets about 10 ounces of food in two feedings overnight, this equals about 400 calories depending on what I put into the blend.  Real food, real food has made all the difference.  If you are reading this and your kid is on some sort of formula and you know its not working, push for real food.  There are pre-made blends you can get, they are expensive but some insurances and medicaid covers it (Real Food Blends, Nourish, Liquid Hope).  We have some pouches on hand that are great for travel but when we are home I blend his food for him.  Our dietician helped with a basic recipe and I fill in the blanks. 

Because we only "feed" him at night he is able to figure things out during the day.  He likes plenty of different varieties and textures of food.  Most of his requests don't have many calories because well that is just life.  His biggest problem is that he gets bored with eating.  Part of this could be age, toddlers do enjoy grazing and eating on the run.  But part of it is because for most of his life he hasn't had to stop everything and eat a bolus of food roughly three times a day.  If he could get all of his sustenance in about five bites 8-10 times a day he would be on board. 

All in all, he's doing very well.  We see GI every few months, Cardiology once a year, dermatology once a year and his surgeon's office for a G-tube equipment check once a year.  It's still plenty to keep up with, especially with Norah's ears and thyroid on top of it, but it is light years ahead of where he was to start.  Praise the LORD! 

Thanks for checking on our boy! 

Confessions of an Introverted Stay-at-Home Mom (Whose Son Needs a Little Extra Care)

I'm anxious.  

Just in general. Anxious. I've been at it for 30 years, I think that makes me a professional.  

I was diagnosed with acid reflux at age 9.  I gave myself GERD over being a good daughter, sister, friend and student before I was 9 years old.  I am wound tight.  I have had social anxiety since I can remember. I spent more time hiding behind my mom's skirt at church than just about any other thing. I can visualize right now, riding into the church parking lot in my white tights and church sweater and I can feel the dread.  I was at a church that loved me and my family, it was the only church I went to until I was 11-so there wasn't a newness factor, there weren't new people there, I knew what to expect and still I felt dread.  

When we moved before 6th grade I had to start all over again with friends and again I remember the horrible feelings about trying to make new friends and find a new church. I was the kid that would get a phone invite to a sleepover and shake my head "no" to my parents while asking them verbally if I could go.  My first answer, even if it's in my head was "No." And it continued in High school, college, new jobs, church, everything.  Fear. Anxiety. Dread.  The pressure of getting into and staying in nursing school was immense and I ended up on medication. 

I over analyze what I said, did, laughed at, if I talked to everyone enough, did I miss anyone? 100s of questions to myself after every social engagement, it's exhausting.  I often say that God making me a nurse was His cosmic joke.  Why else would He place me at a job where I had to meet new people everyday, naked-naked people?   

When Norah was born I quit my job to be at home with her.  We were on the go quite a bit! She was a great shopper, easy to eat with in public, a fairly good listener, she didn't need to leave every store with a treat, it was great! Even so, we often did this alone because I was afraid to ask others to join me. Why would they want to join me? It's just me, nervous, awkward me. 

Enter Keller's crazy diagnoses.  Finally, my go-to "no" was my actual answer.  Dinner out? No. Play date? No. Church? No.  We needed to say no to everything for about 6 months because it was a matter of his life and death.  Those "nos" were easy to say because there was no guilt associated with it.  I didn't second guess my "nos" for the first time ever! And it was kind of great, I didn't have the energy to agonize over my choices because I was worried about Keller.  Oh, the anxiety! 

Cut to reentering society after being in seclusion.  Target looked like a giant petri dish.  Play houses at fast food restaurants? I could almost see the germs on those things!  Every where I went people were coughing an sneezing.  People wanted to see him, to see all of us because we had been hiding.  I felt so overwhelmed being around even family and friends because I had pretty much only seen the same 10 people for 6 months. The anxiety returned, hard.  How could I talk to these people? So many had followed our story and I had tried so hard to be vulnerable online but now I'm face to face with people who had traveled the journey with us, unbeknownst to me.  They felt like strangers to me but I was family to them. My name, Keller's name had been on their lips constantly and while I appreciated that I didn't know their stories like they knew mine. More awkwardness.

2 years later, it's still a struggle.  I feel like I should be better at being social now that I'm 30.  I have seasons in my life where I handle it all better than others but in general, even going to my best friend's house, can still give me anxiety.  I have learned so much about opening up and just being myself through my years at a nurse, a mom, and now a mom to a boy with a few extra needs.  But every invitation we get, every social event we are invited to I wince a little, I wonder just for a second if I could get out of it.  After every gathering, birthday party, Christmas, what ever I question myself, I wonder who thinks my clothes looked strange, did I laugh a little too hard at that joke, did I come across like a big dork? 

So now is the time where I tell you what I've learned.  Where I can tell you the redemption in all of this, are you ready?   Jesus. That's it.  Jesus. I was going back and forth about sharing my story because I don't want to seem whiny and I don't want to make this about myself, even though I just typed "I" like 100 times. Today in church the sermon was about anxiety and I knew that was my prompt to share.  Someone reading this might have the same issues and could benefit from me sharing.  Or, perhaps, I just shouldn't pass up a chance to talk about what Christ can do.  

So, here it is, straight from the Bible-Matthew 6 25-33

“Therefore I tell you, do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing?  Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them. Are you not of more value than they? And which of you by being anxious can add a single hour to his span of life?[a]  And why are you anxious about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin, yet I tell you, even Solomon in all his glory was not arrayed like one of these.  But if God so clothes the grass of the field, which today is alive and tomorrow is thrown into the oven, will he not much more clothe you, O you of little faith? Therefore do not be anxious, saying, ‘What shall we eat?’ or ‘What shall we drink?’ or ‘What shall we wear?’  For the Gentiles seek after all these things, and your heavenly Father knows that you need them all. But seek first the kingdom of God and his righteousness, and all these things will be added to you." 

Here's what stands out to me: Birds don't have silos full of food and yet they have enough food for the day, wouldn't He provide for my needs more than a bird? After all He made me in His image. Worrying doesn't help me at all, it doesn't add time to my life. If I seek Him first, most, best, always, He will take care of the rest.  I have been well taken care of even when things were hard.  God has sent my family food, money, gifts for our kids, blankets, notes of love and support, people that we needed to cross paths with at just the right time.  He has watched over us, protected, guided.  He has even provided people we can love through our journey. If He has done that for my 30 years here on Earth, why should I suspect He would stop or change? It's certainly not my faithfulness that has kept me in His hand, only His goodness.  

He sent His son for me even though he knew I would worry way too much. Jesus died for me all the while knowing there would be days I would be "too busy" to talk to Him and walk with Him. He died knowing that I would want to pray for big things in His name all the while doubting my prayers would change anything.  He still came. He still loved. He still died. For the likes of me.

Oh and here's a good one from John 16: 33.  

I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.

How good is that? He has overcome the world!! That means WE WIN!

So there you have it.  I seek to be perfect and He looks at my mess and says "You are perfectly mine."  I am weak and yet He trusts me with little lives, with a husband who knows my weakness and loves me anyway, with friends who He trusts me with, with ladies at MOPs who need encouragement. And when I doubt myself, when the questions sneak into the corners of my mind I need to remind myself to seek His Kingdom.  This is your invitation to tell me to "Seek His Kingdom" because if I seek Him as hard as I worry....well the world just better watch out!

~alli

October 2016

How is it October? I wanted to get another update in before things change. <fingers crossed> A year ago I was blending 1000 calories into 36 ounces of food and stuffing it all into Keller's little belly in a 24 hour period.  Now, he gets only 4-5 ounces a day, his appetite has picked up, he brings me food he wants to eat, he tries more new things than our four year old, and even his terribly bad "cheeking" of food is better. He was so bad about keeping the skins of grapes, corn, peas, dried cranberries anything that is a mechanical soft food that requires a lot of work, in his cheek for hours at a time. I gag just thinking about having a grape skin in my mouth for 4 hours but I watched him do it.  He still has that talent but he uses it less often.

Keller's speech therapist that we saw last winter was helpful for him but was great for me! She was just the kick in the pants I needed to get Keller eating with his mouth.  Before we saw her I was giving Keller 90-95% of his food into his g-tube.  She told me that he wouldn't eat or be hungry if his stomach was full all the time.  She told me to try cutting his blended food in half. I was so scared to give up that control, for 18 months I had been solely in control of his intake and the name of the game was "Calories In." But it made sense, so we cut it in half and his appetite picked up, it wasn't great but he was learning cause and effect of eating.  He did lose some weight which made me panic, of course, but we kept at it. And now, here we are! In two weeks Keller goes back to his GI specialist and I am going to ask her if we can start a three month trial of nothing by tube. Hopefully, she will be game to try it. If she is then maybe, possibly, hopefully we could be tube free and healed in the next 6 months.  (Whaat??)

As far as his speech, well that is picking up too.  He is babbling all the time and learning new words every day. I wonder at times if more speech therapy will be needed but no need to fret about that now. A lot of his words start with a "d" or a "y." Cross is a "doss", of course birthday-well that starts with a d, happy "Dirday." But a diaper, well that is a "Bi-per" of course. And rocket is a "yotyet." I don't know much about children's speech impediments but "yotyet" seems fairly uncommon to me. :) 

Anyway, he is just thriving! He's a busy boy that is not hindered by his past surgeries or current medical oddities.  He climbs, jumps, he runs and has no fear (ugh).  He loves trains, dogs, tractors, cars, drums, being loud, chasing his sister and whispering "I wuv ooo" at just the right times.

Norah is doing great, also. She loves home schooling with Classical Conversations and we are blown away by how much she is actually retaining.  She has a huge imagination, always has a "friend" over or a new pretend pet! She wants a "really really real pet."  She loves babies and baby animals. If you were to ask her today, what she wants to be when she grows up its a police officer.  She also is on a swinging pendulum of being uber friendly and painfully shy. I am in total denial that she will be 5 in two months. 

Things are going great here at the Davis house! We will keep you posted on the feeding tube developments.

July 4th (on the outside)

We made it! We survived July 4th without anyone needing a doctor! The last "good" 4th we had was in 2012 and I was anxious that with the holiday rolling around again something would happen.  I wasn't sure what it was but I was hesitant to plan anything. 

In 2013 my family was in Plumtree for my cousin's wedding. July 4th I had to make a phone call to my OB to explain my symptoms to her only to have her confirm that it sounded like I was having a miscarriage.  

In 2014, Keller was only about 8 weeks old. July 4th started as normal (for our very difficult normal at the time). But by late afternoon Keller had thrown up so many times we lost count and we went to Emergency Dept. in Greenville, ultimately for a "Failure to Thrive" diagnosis and feeding tube to follow. 

In June of 2015 I had started changing his diet from specialized super expensive toddler formula that was largely corn syrup solids to a homemade blended diet of real food.  While I had consulted 3 dietitians I found it difficult to get much guidance as we made this jump because it was not something that was common practice. I jumped in with both feet and my efforts to help heal his guts ended up clogging them.  Which landed us in Greenville again at the end of June and we spent July 4th 2015 back in Vidant. 

However, that was the last time he was in the hospital so we are close to being a year hospital admission free! Yahooo!!! Keller, you've come a long way, Baby!

Yesterday was trickier than I expected it to be.  As I mentioned, I had been scared to plan anything because I figured it wouldn't matter.  The evening of July 3rd I had a small panic attack before going to sleep, worried about what secret doom was awaiting me on the 4th.  I woke up yesterday anxious, teary in the shower, I wanted to do every possible event to keep myself busy because the tears were going to be close all day. I told Phillip that I was struggling after I got out of the shower, to our surprise the thing that was stinging the most was the 3rd anniversary of the miscarriage and all the wonderings that go along with a lost baby.  Soon we were out the door to go see my brother read the Declaration of Independence as John Penn at Tryon Palace. Later, we went to a friend's for some pool time with a lot of friends and riding out a hurricane of a summer storm, then to my parents for a cookout with family, and finally to my BFF's for some hangout time.  We did it all! All the things I was afraid to confirm our attendance, all of the things we weren't sure we would be able to make, we made them, the four of us! I'm thankful for some girl friends that threw up flare prayers when I was sad yesterday and for my husband understanding that I just needed to be busy, really really busy. 

Keller loved his first 4th on the outside! He skipped nap and was a ball of energy (and sometimes angst) all day! 

In other Keller news, he's doing great! He has a cardiology appointment next Monday and I was going to wait to update the blog until after that but I figured a simple facebook post for that will be sufficient. He has recently seen the GI doctor and had a feeding tube check both offices are happy with his progress.  Keller doesn't look like a kid that needs a feeding tube but he hasn't quite got the full hang of eating. He needs about 1000 calories a day, he takes in roughly 2/3 of those on his own on a good day.  He's so busy it's hard to make him sit still to eat, in true toddler form he is a grazer and could eat little bits all day. He is more adventurous in his choices than his big sister. Once he takes 100% responsibility for his intake and we go 3 months without using his feeding tube, I call the doctor at the surgery office and let them know.  The next step is to remove the tube at home and cover the hole in his tummy with some gauze and tape and be seen in the office in two weeks.  Ideally, the stoma will close on it's own but he has developed some scar tissue that could prevent it from closing totally. If that is the case he will have surgery to close it up and will end up with a vertical line as a scar instead of a circle. But on his sweet scarred up tummy a line, a dot, a lightning bolt won't make a difference to us. He is our boy no matter what and Norah wouldn't have him any other way either. :)  He is speaking a bit more, he has about 40 words and a few sounds that I know mean words. He still is behind on that but no one is worried about it.  We actually exited the CDSA program two weeks ago as he is no longer receiving therapies and we aren't currently using their services.

We are Praising God for where we are this journey! Thanks for checking in on us! 

Playing Catch Up

Since I last updated Keller has had a few things happen in his little life. First let me say, he is doing so remarkably well! He is busier than I ever imagined a kid could be much less a kid with "issues."

In Mid-October we got an email from the respiratory clinic at UNC-Chapel Hill.  (We had been referred to them for an evaluation for a possible diagnosis of Primary Ciliary Dyskinesia following results from a genetic study we are a part of at Duke).  When I called UNC and answered a few questions on the phone it did not sound like Keller fit the profile for a kid in their clinic and we kind of forgot about it. Anyway, in October we hear from them, they have an opening on October 30 and were trying to fill it with a family inside the state since it would be less of a drive.  The catch was that we needed to gather all of Keller's records and images since birth and have them quickly get the information to Chapel Hill.  No problem, only 6 different facilities to contact and consent forms to fill out and fax.  After a dozen phone calls and papers we got it all together and even picked some images up on our way to the appointment.

The machine for the nitrous oxide test. 

The appointment went fairly well and moved pretty quickly: greetings, vitals, history and physical, family history, then the test - a nitrous oxide measurement, and meeting with the doctor over it all. The test was the certainly the worst part.  They wanted to measure the amount of nitrous oxide Keller breathes out. How do you collect air to measure it? We didn't know. Turns out they stick the equivalent of one of those spongy ear plugs with a tube in it into your nostril! Keller did not approve of being held down or having something shoved in his nose! They took about 10-12 measurements that way.  The results along with his history pretty much told the Doctor conclusively that Keller does not have PCD.  Which is great news!

Next, came Halloween, yunno, like the next day. Norah picked out Cinderella characters for us all to be, she and I are from the new Cinderella movie and Phillip and Keller are the mice from the animated version.

November 9th was Keller's cardiology appointment.  We went to the Merci Clinic locally for an EKG and echo and then a meeting with his doctor.  Everything in Keller still looks really good! There aren't many hearts out there like Keller's the holes they had to fill were big but the patch is doing it's job and there seems to be only a small amount of leakage in the mitral valve.  When I asked about any future need for surgery his doctor told me that the thing to watch in Keller is the mitral valve.  He had 3 flaps before his repair, normal hearts have 2.  During Keller's surgery they stitched 2 flaps together, over time there is a chance the mitral valve will need attention again. We do NOT have a time frame for that.  Keller is doing very well-we go again in 6 months! 

Next, we had Keller's first speech therapy appointment.  We had an evaluation a month and some change back.  We found out that he did qualify for speech the paperwork was set in motion.  Last week he had is first visit.  The goals for Keller are to help him get talking but also to help him with swallowing. He is increasingly interested in food and eating which is so very wonderful but he doesn't always know what to do with it once it's in his mouth.  For a while he had a texture issue but now his major eating issue is cheeking food.  He will hold softer foods and skins from fruits and veggies in his cheek for an hour sometimes.  (Gag! Can you imagine holding a fry in your mouth that long?!) The therapist says she wonders if he even remembers it's in there and is going to do some exercises with him to help him be more aware of his mouth.  

G-tube wise, Keller still gets 75-80% of his food through his tube a day.  So we will still be a part of the "tubie" society for a while yet. His blended diet is working very well now and either due to that or growing out of it, he is off his reflux meds.  He still does vomit from time to time, it's much worse when he gets any kind of sick, but it also happens if I feed him too fast or if his food is too cold. 

Finally, we had Keller's 18 month visit.  His pediatrician is very happy with where Keller is right now.  He is 3rd percentile for height (up from 1%) and 44th% for weight (up from 40th%). So he is short but solid, and oh so sweet! The mischief he is capable of is astounding to me, it makes me shake my head but I am glad he feels good enough to cause trouble.  And he gives lots of hugs so I quickly forget about the havoc he just caused.  Thanks for checking in! 

Need for Adoption Funds

I previously wrote about my brother and sister-in-love's adoption plans.  They knew from the time they were dating that they wanted to be parents and that adoption was the way for them to go about it.  They also knew what a financial undertaking it is to adopt.  God laid Poland on their heart and they know their little one is in Poland waiting for them.  It seems every time they hear from the agency the price has gone up, you can imagine how hard it would be to aim for a goal that is always moving.  The recently heard for the 3rd time that it would be more money than they were previously told.  They have done several things to raise money: t shirt drives, baked goods, yard sales, my brother used his ancestry skills to fill in some peoples family trees for them. They mailed off all their paperwork to Poland last week, it should have arrived yesterday and will be translated into Polish.  After translated to Polish, their papers should be given to orphanages and foster homes in various regions of Poland, some time after that they can expect to start getting emails and phone calls. So technically they are "Paper Pregnant."  Hooray!  

One of the exciting parts of being doing with their dossier is that they can start applying for grants to raise funds.  I am going to share their gofundme account here in case anyone is interested in helping them reach their goal and bring home PK (Polish Kid). :) I shared their blog here before but will share it again as well.  Please share if you can.  I would love for them to bring their little Kielbasa as soon as possible. ;)

Here is their GoFundMe account.

https://www.gofundme.com/pkandthegang?utm_medium=wdgt

Here is their blog the documents their personal journey through adoption.

 https://pkandthegang.wordpress.com/

Surgery Anniversary

 

Today feels a bit different than last September 23rd, last year we were waiting around Duke all day waiting to hear if Keller's surgery would happen, feeling excitement and doom when we found out it would happen and then kissing him goodbye and handing him over to a surgeon.  But last September 23rd changed his life. 

Keller is thriving! He is busier than I ever imagined a boy could be.  He loves to walk, is learning to run, loves to read books and is so excited about books he giggles through you reading it.  Norah and he are always laughing and playing. He is into everything and I literally mean everything.  He drums on everything he can find.  He is always moving stuff from one room to another. The house has never been messier! He recently started squeezing you back when you hug him which is just fantastic! Norah tells him daily "Keller you're adorable!"

I know that sometimes God uses earthly things to teach us heavenly messages.  I also know that heart surgery does not equal salvation but follow me...I have been reflecting the last couple of weeks about what I am supposed to glean from Keller's situation.  One thing I have continued to hear is "life more abundant."  I feel that God has given me a glimpse of the life He has for me.  Keller was alive before surgery but his body was weak and he was frail, every breath, every beat of his heart was work. It is hard to compare his life before and his life after surgery.  Now he can grow, crawl, walk, run, play with his sister, play and laugh and smile like he never could before, that is what God wants for us.  He wants us to relish this life and view it as only a glimpse of what is to come. He has a life more abundant waiting for you and for me we just have to embrace it.

As far as an update on Keller, realistically you can hardly tell he is any different from other 15/16 month olds.  He does not speak very much he says "uh-oh," "yay," and occasionally "bye." He still get most (about 90%) of his food through his g-tube.  He is interested in food and can crunch, chew and swallow things like crackers and veggie straws, he likes yogurt and some baby food.  His major issue is learning to swallow foods like apples, green beans and other typical go-to foods for kids who and pick things up to eat.  He tends not to chew and swallow and just holds food in his mouth and then gets gagged.  At his most recent appointment with his pediatrician I mentioned this and he thought maybe a speech therapist could help again now that he has gotten past some of his texture issues.  He will likely have a speech evaluation soon and we will say what they suggest.   We are at a point where he sees his specialists about every 6 months which puts cardiology in November and GI in February.

He is really doing well but I still have fear and anxiety about things changing.  I still worry about him all through the night.  I like to put him in stripes because its easy for me to tell, even with sleepy eyes, that he is breathing. Sometimes the fear of losing him is so loud I can't sleep but I'm learning (as recently as last night) that I have to trust and surrender today just as I did last year, I need to embrace the abundant life God has given me on this earth. 

Thank you for your encouraging words and for your continued prayers you have certainly helped propel our family forward.  Keller still has a huge fan club! <3