Tuesday, October 22, 2019

Back for good !

First of all, what a TREAT to find that so many faithful readers checked in… Hello and welcome back to all of you :) It felt like a small family reunion reading the comments that came in!

I have missed the connections I made here - I wish I had a better excuse for not blogging for so long, but the truth is my life just got so busy with Madison being so sick for SO long and some things had to take a back burner. As much as I loved blogging and writing and connecting with people, I just couldn’t keep up with life online (other than Instagram, which is like a quick post card rather than a nice long hand written letter - much easier to send off in between hospital stays!)





When I last blogged, Madison had just gotten an ng tube for all of her nutrition. This was because it was (finally!) discovered that she was silently aspirating on all of her liquids, which was what contributed to a year of trips back and forth to ER and multiple hospital stays. Her little lungs were absolutely filled with gunk, and ongoing pneumonia was the result. 

Consequently, she went off all food and liquid for four months and was fed through a tube down her nose. I can’t even tell you how difficult those months were- not just for us (it’s time consuming, it’s messy, and it’s just plain gross in my opinion) but for our Bunny.










It was HARD. 

Especially because Madison has always loved to eat. Despite all of her many illnesses, food has always been a source of joy for her. Imagine going from eating everything you loved to being told you could have nothing to eat for four months? Even though she was being fed through the ng tube, she was extremely irritable whenever she saw food. We tried to keep her tummy filled before we ate, but that didn’t stop her from eyeing our plates and wanting to swipe a bite. I am sooo glad those days are behind us. And if you’re a parent who has fed your child this way for longer than four months - my heart goes out to you. I have a whole new level of respect for moms who have dealt with these issues long term. 

At the end of those four months Madison’s ng tube was replaced with a Gtube that was placed through surgery. For those who don’t know, that’s a little button placed in her tummy where she now receives all of her liquids. Some kids need ALL of their nutrition through the Gtube; in the beginning Madison was not allowed to eat any food. We gave her formula through the Gtube for several more months while we slooooowly introduced food. After she tolerated food and did not develop pneumonia again, she was able to eat anything solid.


















Bunny got reading glasses after cataract surgery - more on THAT in a future post !


She still has the Gtube and since last July has gotten all of her liquids through that. She will have a swallow study done again soon to determine if she is still aspirating ... we are praying that she has outgrown that, and that soon she can start drinking again. Will you pray with us for that ? I’m so happy that she has been healthy for over a year, and I am so grateful that we finally got answers to why she was so sick. But I really can’t wait til she can drink normally again and we can be done with the Gtube.

As far as the rest of our family is doing, there is never a dull moment at The Rice Ranch. Since I last posted, we had a wedding ...





Shalanda Rice

Abigail and Kenzie

Hayden the ringbearer

Lily the flower girl 

favorite pic 



Tyler married a beautiful young woman named Shalanda and just like my other DILs, she has become one of my very best friends.


We also launched our first baby church !!!...

(Jason, Naomi, Koa, Norah and Clark - and the foster twins they raised for the first year of their lives... they have since gone home to their Mommy and we miss them so much !) 



In our fellowship, we believe in church planting. This means that there are couples in our church who feel called by God to start a church in another city - just like we did 21 years ago when we came to Corvallis. That couple prays for direction as far as what city they feel God wants them to go to, and they work with their pastor to get ready to do that some day. Last April we had the privilege of launching our son Jason and his beautiful wife Naomi and their children into Portland, Oregon to start a brand new church. This has been the goal of our church since we started it - to reproduce a baby church. We are so proud of Jason and Naomi, and although it was difficult to see them go (and is still hard!!) we know they are doing the will of God in Portland. Please pray for God to build a wonderful church in that city.


somber boys lol



Meanwhile, we are still homeschooling... five of our children are school age, and we have found an amazing resource to help us with that. If you live in Oregon and homeschool, I highly recommend Baker Charter School. I wish I had known about this school years ago. We receive all of our curriculum FREE through the school, and we choose which curriculum we want for each child. We have a teacher who comes to our house every other week to oversee what the kids are doing and help keep us on track. They do state testing and provide tutors if needed as well. They have amazing resources for homeschooling families - which leads me to Lily.

birdie and bunny

backyard fun at The Rice Ranch

summer vacation at the lake



spring break at the beach

last year at the oregon coast aquarium 

with big sissy Abbi


For several years I have been teaching Lily using curriculum I've pieced together through various sources. A few weeks ago, I found out that by enrolling Lily in Baker Charter, she can have access to speech and occupational therapy in our home, as well as whatever curriculum pieces I choose through their online site. I chose Timberdoodle for her, and I was able to put together a kit - with an $800 limit. FOR FREE. Now Lily will have so many hands on educational materials, as well as therapists, and we will have a team of experts helping with ideas for her to learn.

At nine and a half years old she is really loving being at home and learning daily. I'm so grateful for the opportunity to teach her at home, as this is where Lily thrives. She loves being surrounded by her siblings, learning and developing right alongside of them. Home is where her heart is :)



best friends

home sweet home



This blogpost is getting a little lengthy, but I will be back again with more updates. I've really missed blogging and connecting, and it was such a joy to see that there are people who still read blogs and who missed us too !

For now I'll leave you with some questions - please do comment, as it feels like I'm reconnecting with old friends when your comments come in :)

What have you been up to for the past year ? What blogs do you still read, and do you blog ? Do you homeschool your children and how is that going... and if you don't, how is public or private school going this year ?










Do you have any questions for us ? What do you love about this blog and what do you hope to hear about ?


I'll be back soon !

xo Patti

Wednesday, October 9, 2019

Test post

Trying out Blogger’s updated phone app to see if it actually works ...





... and wondering if anyone still reads blogs ?? 

:) Patti 

Thursday, March 22, 2018

Bunny Update

I’m blogging 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 .

Xoxo Patti

Monday, March 19, 2018

I'm back

Where to start.

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.


Much, much love,

Patti xoxoxox


Saturday, May 13, 2017

home

 


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 :)




Sunday, April 30, 2017

Pray for Bunny





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. 


Thank you ahead of time for praying!  

Wednesday, April 19, 2017

take heart, self

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 ...



... enough.