I’m bloging from my phone in the hospital, so hopefully this works !
First of all, thank you so much for all the love and prayers on my last post - I’m so glad to have long time faithful readers still here supporting us. You all are the best !
Tuesday morning we came up to Doernbecher Children’s Hospital to see the pediatric pulmonologist .. the first thing he said when he walked in the room was that neither he nor the radiologist felt the mass on Madison’s CT scan was anything other than very swollen lymph nodes due to her ongoing pneumonia episodes over the last four months. I can’t even describe the relief we felt with those words. He went on to say that he believes this is a result of chronic aspiration - even though we were thickening all of Madison’s liquids, everything he saw indicated that she has still been aspirating. He immediately called the pediatric department at the hospital to see if they could get us admitted, but there were not beds available. We went back home (2 hours away) to get things situated with our kids and Wednesday afternoon the hospital called to say they were ready for us. We checked in last night and Madison had an IV put in for antibiotics, and this morning she had a swallow study done.
If you’re not familiar with a swallow study, it’s pretty simple - a speech pathologist and X-ray tech work together to take live images of Madison swallowing different consistencies of food and liquids. What was discovered was that Madison is continually aspirating on all liquids, even thickened ones . This is a different result than what was show last August, and obviously is the reason she has had six bouts of pneumonia since December. She showed absolutely no signs of aspiration while she was swallowing- she looked as comfortable as could be - which is called silent aspiration and which is why we have had no idea that all her liquids are going directly into her lung.
Right now we are waiting to see if the ENT, pulmonologist and anesthesiologist can coordinate their schedules tomorrow to do a bronchoscopy and endoscopy on Madison ... it may be that she has a cleft in her esophagus that is causing this aspiration (we are actually hoping that is the case because it’s taxable !). If she does have this cleft, they will repair it while they are doing the procedure. If she does not, then she will go home on a feeding tube and we will be working with a speech pathologist on helping her to learn how to swallow better - and it could also be that she just needs time to develop this skill .
So for a few hours we wait to see what the plan is, but right now she is sleeping comfortably now on daddy’s tummy .. I am feeling sooo relieved that we have answers !!!
I’ll blog again more when we know what is happening, but thank you against for your love and comments and prayers - we appreciate it all so much .
The last time I blogged we were going on vacation for our 30th wedding anniversary. The day after we came home, Madison came down with a fever and ended up being admitted to the hospital for pneumonia. Before Hawaii she had been in the hospital for ten days due to pneumonia and the human metapneumovirus. The rest of the summer was spent in the ER or hospital or doctors' offices for repeated bouts of pneumonia and low oxygen. In August she had a swallow study done that showed she was aspirating on thin liquids. We began thickening her liquids, and by September her lung issues seemed to be resolving.
In the midst of all this, we faced a very intense time during which another family in another state was trying to apply to adopt our grandson, Baby L - Jason and Naomi brought him home from the hospital and had been parenting him for two years, but because the other family had adopted his half sibling they were attempting (though never having met him) to appeal through DHS to take him.
Because of my time being consumed with Madison's health, and because the whole situation with Baby L got very ugly (long long story for another time) I stopped blogging. I did not want to take time away from my family to blog, and I did not want a family in a different state looking up our family online for privacy reasons.
On top of all this, Photobucket- who has hosted most of the photos on my blog for over eight years - started a new policy whereby I would have to pay hundreds of dollars a year to restore those photos to my blog. The thought of going back through my files to try to replace all those posts with the correct photos was, as you can imagine, daunting. And not something I had time for.
Fast forward to last December. Another long story, but Madison has been in and out of the hospital, ER, doctors' offices, etc. for six (or maybe seven, I've lost count) episodes of pneumonia. It's hard to describe in one blog post what we have been through - physically, mentally, emotionally.
Yesterday - after spending yet another long night in ER- Madison had two CT scans done that showed a large unidentifiable mass in her right lung. Previously this was thought to be pneumonia - yesterday it was determined to be something else.
What that "something else" could be is a number of things, ranging from something as simple as a cyst, to the very worst. Tomorrow we meet with a pediatric pulmonologist in Portland at Doernbecher Children's hospital to discuss what the next steps are.
Which is why I am back.
I'm sorry for the blank spots where lots of old photos used to be in my blog...sorry for my long unexplained absence (so many of you emailed privately asking if everything was ok - thank you for still caring.)
I honestly don't know what the future holds - maybe it's a simple fix for our Bunny and life will return to normal... as normal as things will ever be at The Rice Ranch.
And maybe there's a different road ahead that we haven't been down before, one that requires more faith and more patience and more trust in God than I've previously required.
Whatever the future, I know God is in control and will walk through it with us.
And I'm just hoping you will too.
Friends and followers of this blog have seen us through some pretty trying times in the past. I'm grateful for whoever is out there who is still open to following along today and in the days ahead.
I don't know how often I'll be blogging, but I do want to keep friends updated on what is happening with Madison.
If you're still here, leave a little note in the comment section ? I'd love to know we have lots of people praying for our Bunny.
I've started this post so many times on the blogger app on my phone the past week, but apparently whoever the designer for that app is, hasn't updated it in forever... and it crashes all the time.
Anyhow....we are home. Too much to say, too little time, because in 36 hours Sam and Miss Bunny and I leave for the place I've been dreaming of going to for at least 30 years. At one point in our ten day hospital stay with Madison, the doctors were telling us there was a chance we wouldn't be able to go on our anniversary trip because of how poorly Madison was doing. Mannnnnny tears and prayers brought us to the video I'm about to post. I wish I had time to journal all that transpired in our hospital stay, but I will have to save that for another time. At the moment I am packing like a mad woman, and I can't wait to share pictures from paradise in a few days !
So just quickly - this video was taken a week ago yesterday...we had been praying like crazy that Madison would be well enough to be discharged by May 5th, which was Noah's 13th birthday. We told him the day before that it looked like we might be in the hospital just a few more days. He was still sleeping when we arrived at the Rice Ranch the morning of his birthday, donuts in tow. We always wake the birthday boy or girl up with donuts and singing on their birthday morning ...It's hard to describe the joy we all felt at being reunited with our children in time to celebrate and keep this family tradition - hopefully this video collage captures a little bit of that happiness :)
Typing quickly from my phone because the blogger app keeps crashing - please pray for Madison. We've been in the hospital since last Tuesday (nine days ago) for her second bout of pneumonia and a virus called human metapneumovirus, which her doctors say is similar to RSV but takes much longer to recover from. Because she just had pneumonia three weeks ago, her lungs have been compromised and she hasn't been able to hold her own oxygen. At one point she was on 6 liters of high flow oxygen at 50%, and she has now been weaned down to 3 liters at 25% oxygen. We are PRAYING she can be weaned off today - I am missing our children so much and just want us to be home.
When Lily was a baby I wrote a blogpost called "Enough", detailing a recurring dream I'd had. It was a soul-bearing kind of a post, and in all honesty I've kind of steered away from those over the past few years.
I'm grateful - yes grateful - for the opportunity to raise two little girls with Down syndrome. So I don't want anything I say here to be misconstrued or misunderstood because I'm honest about their challenges and mine.
But some posts - like this one or this one or this one- are therapeutic for me. They're not written to solicit pity or praise; they are mainly just a "word of encouragement" to myself: take heart, self. It's going to be alright.
So today I went back to reread those posts, and even though I'm cringing just a little bit at the thought of writing a similar one.. I'm doing it anyway.
Because I need a "take heart, self" moment here. And maybe someone out there does as well.
After Lily was born, and the words "Down syndrome" became part of the common vernacular in our home, I spent the first year on a roller coaster of emotions. And I would say that the majority of those emotions were good ones…because for the most part, parenting a child with special needs is just like the first year of parenting in general - there were good days and bad days. Days when I felt like I was adjusting to what it meant to be a mom, and days when things felt out of my control.
But the difference between that first year with my first baby, and that first year with Lily, was this : when the dip on the roller coaster of special needs came, it was huge. Like Space Mountain versus the kiddy roller coaster in Toon Town, huge. And it wasn't a dip, it was a plunge. A mind- numbing, shell-shocking, out-of-nowhere plunge into darkness, and it wasn't ever "fun"; it was pure hell.
I've never liked roller coasters in real life, and I hate them in my emotions even more.
And almost every time that dreadful plunge came, it was because of comparison.
You know that saying – "comparison is the thief of joy"? It becomes incredibly real when you're the parent of a child with special needs.
Because you don't just compare your child to typical children… you compare them to all the other children with their syndrome. At least for me that has been true .
So I said all of that to say this : it's been a long, long time since the comparison bus hit. Maybe five years. But when it hits.. and the other day it hit .. it hits hard. And it only takes a moment for the downward spiral to begin. Just one little trigger ... reading about another child with Down syndrome, Lily's age, conveying abstract emotions in concrete terms... and that wicked bus knocks me down.
And the thing that hurts the most is not the fact that she has Down syndrome - but the horrible introspection that comes after the bus hits.
And it goes something like this..
Have I done enough ?
Would my girls be better off if I were doing more?
Is there something I'm doing wrong?
Have I failed them somehow?
Am I missing something?
How much of "who they are" is because of their genetic make-up -- and how much is because of me?
And this is where I have to stop the bus.
Don't get me wrong - there is a place for healthy introspection. There is a time for asking questions and making sure we aren't missing avenues of help for our children. And I'm never opposed to looking for new resources or bouncing ideas off other parents or educators as far as giving my girls the tools they need to learn.
But then there is the bus.
And when I'm knocked down by the bus, all careful and healthy and honest introspection is replaced by an infinite number of what-ifs.
There is no room for a truthful assessment of "how" my girls are doing, because I'm drowning in the the sea of comparison.
It doesn't matter what Lily can do - just did today ! - because the comparison bus just robbed me of that joy.
I was thrilled yesterday that she got herself dressed for church, folded her play clothes and put them away, told me "I love you" and tried to write her name. But those proud mom moments - held up in the light of another child's accomplishments - are crushed under the weight of comparison.
she picked out the entire outfit herself and came downstairs ready to go. "Mama, Lily dressed... ME!"
And here's where my "take heart, self" speech comes in.
Patti: take heart.
Stop the bus.
Pick yourself up.
Stop the what-ifs.
Because at the end of the day, what I'm left with is this: God gave me my children - those with special needs and those without - and He also gave them me.
If my children's futures are completely in my hands ... if everything they are going to be is left up to me, and what I can or can't do for them ... then we are already sunk.
Because truthfully I'm always going to fall short somewhere. Truthfully, there are always going to be things I miss, areas where I could be doing better.
That's true as a mommy to Lily and Madison, and that's true for my other ten children as well. I didn't suddenly become a perfect mom when my daughters with designer genes were placed in my arms. I wasn't instantly, miraculously infused with the wisdom of the ages – and they didn't come with a blueprint for life either.
How many times as parents have we wished that all of our children came with special instruction manuals, handwritten by God? But as much as I wish I could be the perfect mommy, always knowing exactly what it is my children need to succeed in life ... at the end of the day who they are left with - is me.
All of my children have strengths and weaknesses, special needs or not. And no two of them are the same. I have twelve children who excel in different areas - some sing, some don't, some love math, some hate it with a passion, some are bookworms, and some struggle just to read. Some of my children are masters at keeping their rooms clean, and some can hardly remember to make their beds. We have artists in our family, musicians, scholars, inventors, comedians and creative geniuses alike - they all arrived with distinct personalities and passions, hardwired by their Creator... not me.
And just as I can't take full credit for their strengths, I can't take all the blame for their struggles either. I'm the same mom to all of them, and yet somehow ... they are all unique.
And so this game - of comparing one child to another - is really like another old saying, you know ? It's like comparing apples to oranges. I place such an unnecessary burden on myself when I expect a different result. If I can't compare Noah or Jackson to other children their age… with the same amount of chromosomes.... why would I do that for Lily and Madison ? If the comparison game is an effort in futility for any of my children ... then it's even more so for my daughters with designer genes.
I cannot do this job, cannot be their mama, cannot live this way, wondering if I'm enough.
I have to trust that not only did God give me them, but that He gave them me, and that apparently He believed I was up for this...that I was enough.
I might drop the ball at times, might miss something at times, might not read enough or try enough or ask enough...but I do love my children more than life itself, and at the end of the day I choose to believe that is ...
It's April and that means it's one of my favorite times of the year… spring.
Combine this season with my favorite place on earth – the Rice Ranch - and you have the recipe for one very happy Patti.
March is birthday month at the Rice Ranch – eight of us celebrate birthdays, and that is not even counting my mom, and brother, my nieces and nephew, and Sam's brothers. It's a lot of fun, because nothing makes me happier than spending time with my family ... but it also requires a lot of energy – birthday parties and gift giving and celebrating galore makes for one. tired. mama. :)
But March madness is over and April is here... consequently I am consciously making an effort to slow things down and soak up all of the new life around me.
Having grown up in a state where the seasons just all kind of blended in together, I have a deep appreciation for four distinct seasons now.
In Arizona, warm winters blended into hot springs, which blended into hot-as-hades summers and then faded back into "just hot" falls. The leaves never changed because cacti don't have leaves, snow was some mythological thing we only read about in books, and rain was so rare that we actually stayed inside during school recess when it occurred. "Rainy day recess", it was called… which makes me laugh, thinking about it now. If schools canceled recess because of rain in Oregon, kids would never even know what a swing set is!
Honestly though, I love the rain. I've blogged about it before, but if we go several days without rain, I get ... twitchy. Don't get me wrong, I love blue skies and sunshine and WARMTH, especially come April. But rainy days don't bother me in the least... twenty-three years in brown Arizona gave me an appreciation for what a healthy dose of rain does for the landscape ...
And it always blows my mind (to use my husband's favorite phrase) that trees can be so many colors. Twenty-two years living in Oregon, and spring still takes my breath away.
Sam and the kids and I have been going on long leisurely walks around our neighborhood the past few weeks. While our new neighborhood does not have the designated walking trails that our previous one did, there is still so much to explore here.
Hayden asks me daily if we can "go on a walk together." He shares his mother's love for the great outdoors- ever since he was old enough to sit up, he has preferred being outside to being indoors.
This girl as well ...
And what is it about eating outside? Is it just me, or does food actually taste better when you eat it outdoors? Everything is yummier, and tastes (don't laugh) healthier when we dine al Fresca ... even when it's just Dominos pizza ;)
Even Miss Bunny is happier outside...
Just a few more photos from last month, and then I need to go iron clothes for our Wednesday night church service...
Just for fun in the comment section, tell me what spring is like where you live ...