How to Not Fight with Your Feeding Pump When Using Home-Blended Food

We had been struggling with feeding pump issues for literally years. WHY had I never heard of this solution before?! Now, after one simple post on a Facebook parent group for Tubie parents (parents of kids who have a feeding tube), I discover that there is a simple hack that makes blended food get along with my son’s EnteraLite Infinity pump SO much better than before!

If you home-blend food for your Tube-fed kiddo, or if you use a real food-based product such as Real Food Blends that is thicker than formula, there is a simple trick that helps the food to flow through the pump without so many issues and “No Flow In” alerts, clogs, etc. It’s called, “Modifying the Feeding Bag!” You can simply do a google search for “How to Modify the Feeding Bag for an EnteraLite Infinity Pump” and then scroll down to ALL the youtube videos of other Tubie moms and such showing you exactly how to do this simple hack! We have been doing it for a few weeks now and it has been a GAME CHANGER!

Here is one of the many videos that will show you the trick:

A Heart-Wrenching Miracle

Hey there. The Lord has brought our family through a rough experience. We rushed our little Alan to the ER due to a severe illness and he was admitted to the PICU at Children’s Medical Center in Dallas and remained there for 26 days, from June 8 – July 3, 2021. We nearly lost him and were very torn-up, but praise God, He heard all of the prayers and answered according to His great Mercy and Kindness.

I’m going to post a link to a video where I describe a little bit of our experience instead of writing it all out. I’m also posting a video of Alan and his brothers on July 4. Please join us in praising God for His Faithfulness even through dark days, and His Power to heal and to deliver out of even the most dire of situations! Pay special attention to the last two pictures below! That was when I knew we had our Alan back!! That was Day 22 of his hospital stay. He and I were SO happy that day, and every day after!!

Here is my summary of our heart-wrenching, roller-coaster, Lazarus-type experience.

A Miracle

My baby has not been on oxygen for a month now.  No explanation, just stopped needing it.  “God, I PRAISE You!  Please continue Your good work in my son’s life and body!”  The doctors say he must have just developed and grown to the point where he doesn’t need it anymore.  He used to need it every night when he fell into deep REM sleep, even if just .5 liters or 1 liter.  He used to need it during the day here and there as well.  Back in the winter and early Spring of THIS year he was on it 24/7, sometimes above 2 liters!  And now… NOT AT ALL!

I don’t know what to call this but a miracle.  I know it could all change any day and with any virus.  But that doesn’t hinder my joy, my amazement, at this gift.  And oh, how we need these good gifts, dear Lord.  Life can be hard.  It has been very hard.

What has been hard, you may wonder?  Well, getting adequate nursing coverage continues to be a struggle.  We have a solid team of three nurses that cover just enough to keep me (mostly) sane, so that is something to be hugely thankful for!  But we currently have four day shifts that are uncovered and we are interviewing and looking for nurses. 

One of the days that has been most difficult to find help with is Sundays.  Therefore, our church attendance has been spotty.  We try to alternate Sundays so that one Sunday Jim will take Dean and Henry and I will cover all of the Alan related duties that morning (meds, feeding bag change, airway clearance vest and nebulizers, etc. etc.).  The next Sunday we switch.  It’s not ideal, but it’s better than not going at all. Perhaps in the future we will be able to get on top of things enough to be able to take Alan and all go together. We’ve done it before but it is pretty hard. We would have to get up earlier then we are currently willing to do. Sleep is a precious commodity.

Also, we had COVID about a month ago now.  You know, that little virus that has been turning everyone’s world upside-down?  Ha ha.  Well, my and my husband’s cases were very mild, so that was no big deal.  It was like a cold or a minor flu bug for us. Relieved about that for sure! The hardest part by far was everyone else’s reaction to the word “COVID.”  My oldest son had to stay home from school for 25 days despite having not one symptom himself the entire time.  And trust me, I was not social distancing from him, sorry.  But that was the school policy.  Back to that awful “remote learning” thing from last Spring.  Ugh.

Hardest of all was not having nursing coverage for Alan for the better part of an entire week, all while we were supposed to be resting in order to get over the virus.  Yeah, not so much.  The coverage over the two weeks that followed wasn’t terrific either.  Extra nurse mommy night shifts were grueling.

I am so grateful to God for two of our nurses who agreed to cover a few shifts that first week, all suited up in PPE, face shields, gowns and all.  And it was a huge relief that no one got COVID from us that we know of.  The nurses are finally all back at this point, so we are back to being able to both sleep at night.  We have nursing coverage 6 nights per week. Dean is finally back at school now, so it feels like we are finally past all of that craziness.

Through it all, and despite a few emotional break downs from me, God has been faithful to get our family through the hard days.  Practically speaking, the most important survival tool He has provided me is my dear husband.  I would be a mess without him.  Our marriage is not some picture-perfect, rose-colored scene, but friend, believe me, God has provided above and beyond for me by giving me Jim.  So often God answers my prayers through my husband, even in ways I’m not expecting.  I got a gem in Jim, let me tell you. : ) Smart, solid, caring, loving, patient, dependable… where would I be without that man?

Happy Henry
You know those “Fragile” stickers they put on your bags when you do online grocery pickup from Walmart? Well my sweet boys had the idea to put one of them on a piece of paper in honor of our little special boy. He was on the floor next to Dean so I snapped this pic.

It’s a miracle Alan is not currently on oxygen.  And it’s a minor miracle we made it through COVID, still in tact as a family and that Jim let me get away for the better part of two days so I could restore.  I’m just about to head home. I found a nice little Air BnB near the Bishop Arts District in Dallas in which to sleep, watch shows, read my Bible and work on songs. True introvert paradise and much needed.

I will close with a few quotes from a book I’ve been slowly reading, called “The Uninvited Companion,” by Scott E. Shaum.  I love his perspective on the suffering and hardships we face in this life. This first quote is from page 99.

I have done what God has shown me to in my calling and it has “cost” me my health.  Yet the beauty God has born in me through this loss has been profound.  God uses the confounding pains in our lives to draw us into his love and to usher us deeper into his purposes…. Jesus, by the world’s standards, was a fool.  But we know him to be the power, wisdom, and beauty of God.  He gave himself for his own and most rejected him.  We give ourselves for others, but we are not promised we will be received.  Success is in the giving, the loving, the speaking, the going, and the showing up day after day – it is in the faithfulness – and the results are in God’s hands

And this quote (page 102) was a comfort to me, as I have emotional breakdowns now and then.  When I’m pushed to the brink, it can result in me being a crying puddle on the floor, complaining and crying out to God.  I most always apologize to Him for my complaining afterwards, and sometimes feel a bit guilty about it.  Maybe I shouldn’t.

Verbal and emotional expressions of loss and grief are manifestations of faith.  God has designed the grieving process for our own wellness.  When we deny it, or otherwise suppress it, the grief is still there.  It will surface – eventually.  If it is not expressed well, then it will be expressed in unhealthy ways.  What’s more is that we miss out on an opportunity profound loss extends to us, which is to venture deeper into communion with God and those closest to us.

Thanks for reading, friend.  I pray you will cling to Him this Christmas season. And keep the dialogue open with Him, no matter how messy or half-hearted you feel your prayers are.  When life is hard, He still holds us up, still holds us close, probably closer even than when life is all sunshine and roses. 

And if your life is going great, BE THANKFUL!  Do NOT feel guilty or anxious about what might be around the corner.  Just ENJOY it!  God gives all kinds of seasons in life, and we need to receive them all with open, trusting hands.

Merry Christmas.

I Don’t Know What I’m Going to Do on November 3 (A Political Post)

I know this is out of character for this blog, but I just really need a place to vent. Here goes…

I don’t know who I’m going to vote for on November 3.  I am a Conservative and have always voted Republican in the past, except for in 2016 when I wrote in “Evan McMullin.”  That was a hard decision, but that’s what I did.  I support the bulk of the Republican party platform (the 2016 platform, since that’s the one they’re using again this time around), but I do struggle significantly with Donald Trump as the figurehead.  He lacks the character and maturity I so want to see in the person I vote for as President of the USA.  

I know that some who read this will think I’m foolish for not having settled on voting for Trump.  And I know that others reading this will think I’m borderline evil for even considering voting for Trump.  I can honestly see where both sides are coming from.  

I know that I cannot vote for Biden.  I’ve considered it.  I’ve listened to the “never Trumpers” who are former Republicans who dislike and distrust Trump to the point that they will vote for a Democrat over Trump.  I understand this argument on some level, but I personally cannot do that.  I am too troubled by the Democrat stance on abortion and LGBTQ+ issues and I believe in smaller government in general and more free market and lower taxes and religious liberties.  

(Sidenote: I apologize if my opinions are offensive to any reading this.  I love all LGBTQ+ people, I just do not believe that men and men and women and women who get “married” are actually married, because marriage is between a man and a woman, as ordained by God, as explained in Genesis.  That is my strongly held personal belief.  I mean no offense in stating this and I apologize if this offends you.  I assure you I love LGBTQ+ people and would love to be friends with any who identify as other than “straight.”  I have close friends who are not straight and they know my stance on the issue and I know theirs, and we still want to be in each other’s lives because we respect each other as human beings.  I am more than ok with being friends with people who disagree with me.)

However, it is difficult for me to get on board with voting for Trump, even though I do like much of what he has done while in office, policy-wise.  (For a few examples, see and  

I was very disturbed about the “stand down and standby” comment that he made regarding the Proud Boys.  I did some digging around, though, and I don’t actually think he meant it to sound the way it sounded.  After the debate he was asked about the comment and he said this: “I can only say they have to stand down and let law enforcement do their work,” Trump said. “I don’t know who the Proud Boys are, but whoever they are, they have to stand down and let law enforcement do their work.”

It seems to me it was a “gaff” of sorts to say “standby.”  I think he was just thinking of the clashes between the Proud Boy types and the Antifa types and was addressing that issue and was wanting them to stand aside and let the police do their jobs.  This is most consistent with other comments Trump has made concerning race and white supremacists in the past.  

Still, it is so troubling to feel like you have to explain why he’s not really a racist.  That just seems so wrong.  He’s the President, for crying out loud!  I am longing for more political unity in our country.  I know we will never see completely eye to eye, but I think that’s part of what makes America great (to steal a phrase)!  We need to discuss and debate and take sides and re-evaluate our positions.  I wish we could speak to each other in a way that was more civil, and truly listen to each other.   President Trump has not been helpful in this regard.  It really saddens me.  It makes me somewhat ashamed to call myself a Republican.

Although I disagree on certain issues with people who identify as Democrats, I respect these people.  If I know you and you are a Democrat, reading this, I most likely respect YOU.  I know and love many who call themselves Democrats.  And I know that most of us don’t agree 100% with our political parties.  I have a handful of issues I lean more moderate or left on myself (immigration, gun control).  I wish we could get back to truly listening to each other and respecting each other as human beings.

So… I’m still not 100% sure who I’m going to vote for.  Right now I’m thinking of writing in “Mike Pence” because he is much closer to what I am looking for in a President than Donald Trump.  I know this would essentially be a vote for Biden, but I’m just not sure I can vote for someone who is just so incredibly bad at helping us as a country to listen to each other and find the good in each other.  I’m worried about the pridefulness I see in President Trump and what that might lead to.  I’m worried about how insensitive he is as a person and how this is playing into our increasingly divided country.

I prayed about it again tonight while taking a late night walk after the kids were down and before getting to my menu planning for the week.  I know my vote is just one vote… but I take this privilege very seriously.  I want to feel as sure as I can that what I am doing is as close to right as it can be.  I want my vote to send the right message and to support the best outcome.  But the truth of the matter is, I simply do not know what is right this time.  I feel confused and lost.

So why am I writing all of this?  I guess I just want to be heard.  I want people to understand that this may be an easy decision for a lot of people, but it is incredibly hard for some of us this time around.    

“Lord help me, and help us to be led by You on November 3.  I trust You and I pray that Your will WILL be done, in the USA as it is in heaven.  Please help us as a country to really listen to each other and to truly love each other, no matter who we vote for on November 3.  Please help us to remember that You alone are the One who has all the answers and the One who will never lead us astray.” 

Keeping up with the Benders

God is Faithful. He is strengthening my faith. This season has continued to be stretching, challenging, but I still sense I am walking on solid ground, with Hope ever floating overhead, keeping my chin up, most days.

Here are the major happenings with Alan and our family since I last wrote, as I recall them:

Fall 2019

The first challenge we faced was a significant uptick in Alan’s reflux and vomiting that began in August for reasons unknown. There were a few weeks in September where it didn’t seem as bad, but then it went back up to where Alan was throwing up about once every three days and having reflux at least once a day in addition, sometimes even up to four times a day. It was a terribly messy couple of months.

After debating our options (Nissen fundoplication vs. G/J tube) we decided to get Alan’s G tube switched to a G/J tube. The G tube goes directly to the stomach but adding the J port gives us access to Alan’s small intestine. You can feed a person directly to the small intestine, just at a much slower rate than you can feed someone to the stomach.

Switching to the G/J tube turned out to be a great decision and solved the problem quite quickly. However, we were overwhelmed for the entire month of November, before figuring out that there was a much easier way to handle all of the cleaning and changing out of feeding bags. Turns out there are special needs moms who make these amazing, insulated feeding bag covers on etsy where you can place an ice pack on one side and the feeding bag on the other and then you can go without changing the feeding bag out for up to 12 hours (Search “insulated feeding pump bag cover” on etsy). This has been a total lifesaver!

Winter 2019-2020

Over Christmas break we were crazy enough to cram all three boys, including Alan and ALL of his medical equipment and supplies, along with Alan’s nurse and her son into our minivan and drive 10 hours north up to Lincoln, Nebraska, to be with family for a precious few days, and then down to Kansas City to do the same for a few more days. While it was great to be with family and our nurse helped a ton during the day (Jim and I switched out doing the night shift with Alan… not much sleep on those nights as Alan was battling a virus most of the trip), I would rather never attempt such a thing again.

It was completely exhausting juggling everything with Alan’s care along with all that you normally juggle while traveling at Christmas with kids. Just picture a huge plastic bin filled with half-wrapped Christmas presents mixed in with enough medical equipment to set up a traveling hospital room plus the typical amount of luggage for three adults and four kids and you get the idea. Never again, please. Still… I’m glad we did it. Just never again, please.

It was probably less than a week after we got back from that trip that Alan was in the ER. His symptoms had gotten a little beyond what I was comfortable managing at home without knowing for sure what he had. He had been battling one or more viruses for the past week or two. Strangely enough, he tested positive in the ER for Coronavirus, before Coronavirus was a worldwide obsession. His was most likely just the common strain since this was the end of December. The nurse who told me what he had made a joke about how it was spelled the same as the beer and we all laughed it off as just a run of the mill virus.

Crazy story alert. So we went home from the ER on December 30 with a prescription for antibiotics due to a small amount of mucus or fluid in Alan’s lungs that the doctors wanted to treat as a pneumonia just to be safe and we felt like everything was going to be ok. I was super exhausted from the trip to the midwest combined with a few “nurse mommy” days and nights after the trip due to a few nurses taking off, and then the trip to the ER the day before. I really was not well but was so looking forward to taking a hot bath and relaxing after our night nurse arrived. But this was going to have to wait.

Not long after our night nurse arrived on New Year’s Eve there was a knock on our door. Jim was at my brother’s house with Dean and Henry for a New Year’s Eve get together. I had declined because I was feeling quite exhausted. So I go to the door, not expecting anyone in particular and am stunned to see not one but THREE policemen standing outside! My heart rate immediately shot up and I think I went a bit white. I definitely didn’t like the thoughts that were racing through my head at that moment, particularly because Jim and the boys had been out on the roads earlier.

After a brief conversation one of the officers informed me that Children’s hospital had been trying to get a hold of me and I needed to call them about a test result for my son, Alan. I still don’t understand why in the world they needed to have three policemen to deliver this news to me. Children’s hospital had indeed tried to reach me a few hours earlier, but I didn’t answer since it was an unknown number and hadn’t had a chance to check my voicemail.

I called over there for clarification and they told me that, yes, I needed to bring Alan back to the hospital right away because the his blood culture from the previous day was growing bacteria. It was so odd because Alan seemed to be doing better and was calmly sitting near me. But of course, I packed everything up as to be prepared for at least a three night stay, called Jim, trying not to freak out, he left the boys with my brother and sister-in-law and we drove Alan back to the ER.

So once we get back to the ER room a doctor quickly comes back and apologetically tells us that another test result just came in and the specific type of bacteria in his blood is one that indicates it was most likely just a skin contaminant and his blood culture was probably fine. They took his blood once more to be sure and sent us on our way. We got home about a half hour before the clock struck midnight and I was putting Alan to bed and unpacking when, at some point, the new year began, as Jim was off picking up Dean and Henry from my brother’s house. HAPPY NEW YEAR!!! Ha, I’m quite certain we will never have a more memorable New Year’s Eve – at least I sure hope not! Thank God Alan was okay.

I don’t remember much from January and February except that we had at least three viruses move through the house and most members of the family, usually beginning with Alan. One of the viruses was just awful. To be quite honest, I would not be surprised if it was actually COVID-19. It started with Alan and came in two waves, but his case was pretty mild, thank God. Then I caught it and it was TERRIBLE for me. I got the first wave of it and it just knocked me out for about a day or two with exhaustion and chills but that was mostly it. I thought I was getting better, and then about a week later, WHAMO, I get a second wave that was worse than the first. I was exhausted, had a low grade fever and vomiting, and then a day or two later came THE most intense, pounding nasal pressure I’ve ever experienced. It made me feel claustrophobic because I could not breathe out of my nose at all and every time I blew my nose it would immediately clog up again. This continued for about a day until the nasal drainage began, and this was very intense. I was coughing for about two weeks after it finally cleared out.

Anyways, that’s probably too much information, but I feel like I need to back it up if I’m going to say it might have been COVID-19. I should probably get one of those antibody tests so I can really know…. Anyways, it was just one of the many “nuts” experiences of our recent history.

Another change that happened in February was that Alan’s stomach stopped tolerating the meds and water flushes that we had still been giving via the G tube. He was having a lot of reflux episodes. After an x-ray to make sure his G/J tube had not come up into the stomach, Alan’s GI Doctor recommended switching everything over to the J tube (goes to the small intestine) and also switching his reflux med from Famotidine to Prilosec (Omeprazole). These two things worked very well for Alan.

Spring 2020

Along comes Spring and we take Dean and Henry to Galveston to see the ocean for the first time over Spring Break. This was the first family trip we ever took where we left Alan behind with the nurses. It was just for two nights but it wasn’t an easy thing to do but it really was the right decision. Alan was fine and we were actually able to relax a bit. It was only two nights, but it was fabulous.

Once we got back from Spring Break, the country started going nuts about COVID-19. People were clearing out all the toilet paper, cleaning supplies, bread, milk, eggs and ground beef, among other things. I refused to go to the grocery store even one day earlier than I was planning on because I didn’t want to be a part of the panic. I had decided we would use cut up squares of old washcloths for toilet paper if it came to it. Thankfully, it wasn’t that bad. We had to conserve, but once I started going to the store at 8 am I usually could get most of what we needed. But man, it felt like the world was going crazy. I guess that’s because it pretty much was.

And then the schools were shut down. At first we thought it was going to just be for one additional week of Spring Break, but it quickly became clear that this was most likely going to shut schools down for the rest of the school year. I’ll spare you all the details, but the stress level in our house was very high for the rest of March and for pretty much all of April and May due to trying to home-school my seven year old, babysit our main nurses son whose school had also been cancelled, keep our four year old busy, trying to mediate conflicts between all three boys, and also trying to fix a huge Medicaid issue that popped up. We were in danger of losing Alan’s Waiver Medicaid due to a clerical error so I was dealing with all of that for about two weeks as well. No one keeps you on hold for a minimum of 60 minutes and takes a minimum of 30 days to process a simple form like government-run programs!

The Medicaid issue got resolved thanks to the parent of one of our main nurses former patients. She gave me a tip on how to get Medicaid issues resolved and that was a facebook page called PTFK Warriors (Protect Texas Fragile Kids). They had instructions on how to get the attention of certain HHSC personnel (by email) so you don’t have to just wait around while you child loses their much-needed services. It totally worked too, so that was a God send.

Another stresser that began in late April was that we lost our main nurse rather abruptly. She had been our rock, caring for Alan for over a year and was covering 5 twelve hour shifts per week. Sadly, her father became very ill and she had to fly to Taiwan to be with him. She had to quarantine for 14 days before she could even see him due to COVID- 19. But it was all for the best because she did get to see him and spend some quality time with him before he passed away. We of course understood why she had to go, but it was of course another hurdle in a season of hurdles.

Once again, God proved Faithful. Through all the chaos, stress, worries, lack of sleep and hours of work, He brought us through to the other side. And the other side is bright! We now have a new nurse on our team who has been a huge blessing to Alan and to us! And we have our previous main nurse back, now for two days a week, as well. And there is no doubt that God was leading her to so quickly fly to be with her father. It was so important for her to have that time with him.

I feel like I have my “dream team” for Alan right now. Each of Alan’s five nurses brings something unique and wonderful to Alan and to our family. One nurse feels like a little sister at this point and another is a new friend who is really challenging me in my faith and inspiring my walk with God, and another is a steady rock who allows me to sleep at night by caring for Alan four nights a week, so faithfully.


Another huge praise is that Alan has been able to be on room air (as opposed to on oxygen) more and more recently. He had been on a downward curve ever since January and it had gotten to the point in April that he was on two to three liters of oxygen most nights and one to two liters during the day. Then I had an appointment with Alan’s Pulminologist and we started aggressively tracking his blood oxygen saturation levels throughout the day and trying new things, including cutting back on his “tastes” since the Pulminologist suspected that micro-aspirations were the main cause of his saturations being where they were. This means that Alan could have been aspirating daily or weekly on his own saliva or on the small amount of purees we were giving him just for pleasure three times a day.

Ever since we started paying more attention to his oxygen saturations and also cutting back on his tastes, he has been getting better and better. I truly give praise to God because it really isn’t clear exactly why he has improved so quickly. It could be due to cutting back on his “tastes” and it could be that the late spring and summer is just the healthy time of year, but either way, I know it would all be fruitless were it not for God’s blessing on that boy. He has actually been doing so well this week that we have taken off his oxygen completely for several hours during the day.

It seems Alan has two main issues when it comes to his breathing: 1. Mucus tends to settle in his lungs because he isn’t active enough due to his severe cerebral palsy and also possibly due to aspirating on his own saliva or food during the day. When the mucus builds to a certain extent, it negatively effects his blood oxygen saturation levels. 2. When Alan falls asleep, his blood oxygen saturation levels drop as his breathing slows in his deep REM cycles and rises when he becomes more alert, most likely because of the holes in his brain and their affect on this automatic function.

Another issue we’ve seen pop up recently is random fever spikes that sometimes come with or without seizures, some mild, some severe. His neurologist said that since temperature regulation is also a function of the brain, Alan could be prone to fever spikes that are not related to a virus. This sure is what it seems like because once we get the fever and seizures under control with meds he bounces right back and has no other symptoms. Thankfully this hasn’t been happening lately. It seemed to pop up while we were down-dosing him on Phenobarbital since we were trying to switch him to Depakote (Phenobarbital has a negative effect on bone density if used for more than a few years).

I know this post is already way too long, but I’m including all of this in hopes that someday some of this information might be useful to another mom of a special needs child. It has been an uphill journey and I so hope that I can someday help someone else’s journey along, just like so many people have helped me along mine. “God, please let these words be a blessing to someone somewhere.”

Another positive trend in our family’s life has been the two older brother’s attitudes toward their little brother. It has been priceless to see biggest brother Dean really grow into his role as the big brother. Yesterday we took all three boys to the park after dinner, with our faithful Nigerian night nurse coming along in his bright red scrubs, me carrying the suction machine (I’m sure no one was staring, ha ha). It touched my heart to see Dean holding Alan’s hand the entire way to the park while he was being pushed along in his wheelchair. He just really loves that little guy and he totally gets that he isn’t like other kids, and that’s one of the reasons he is so precious to us. Middle brother Henry is also becoming more nurturing and kind towards Alan as well, in his own ways.

Thank you for reading all of these words from me. I hope to post again soon with less events and more reflections. We shall see what the Lord allows.

Here is a verse I have been challenged by recently, especially in regards to how I pray for Alan, and the underlying feelings that can quickly flood my heart, such as doubt, when I pray for Alan’s healing:

“And without faith it is impossible to please him, for whoever would draw near to God must believe that he exists and that he rewards those who seek him.” -Hebrews 11:6

I have no certainty that Alan will ever walk or talk. The doctors certainly have told me quite clearly that this would be a miracle. However, I DO have certainty that anything is possible with God! I have been challenged lately by one of our new nurses to ask God and to not doubt. This is certainly a challenge for me because I almost do not know how to not doubt and I don’t want to be presumptuous, but at the same time, I don’t want to miss out on something that God is more than willing to do because I was too conservative in my requests and hopes for my son and too conservative in my faith in God and His desire to bless those who seek Him.

Just some new thoughts I have been mulling over. It’s going to take me a while to digest them, but I wanted to share in case they strike a chord with anyone. Feel free to share if you have a thought for me to consider regarding all of this. Thank you, friend! Hope you are well.

A Real Downer, But With Cute Pictures at the End

Can I say it? It’s been a hard month. I’m finally taking some me time here at a random coffee shop. I just needed a break from life. Now that I’m here, the weight of everything is hitting me. Life has been heavy, and yet still beautiful at times. If you have a child with severe challenges, you will probably understand where I’m at emotionally right now. If you don’t, how could you, unless you’ve been in a household with a child with severe disabilities for a length of time? I’m not trying to sound “poor me,” it’s just the truth. If you haven’t walked in these shoes, it will be hard to explain what it is really like.

When you have a child with severe challenges, even if you have private-duty nurse coverage most days, you are susceptible to the unpredictable changes of the nurses you have come to rely on. We’ve had two nurses unexpectedly quit on us since beginning nursing coverage back in February. This immediately turns your world over for a period of time, not only because you now do not have help caring for your very high-maintenance child, but also because sometimes they send over a coverage nurse, and you have no idea what kind of a nurse you’re going to get, and then you’re also trying to interview several nurses in order to find someone who will be a good fit.

And of course you have to spend half your day training anyone who comes over to help. It’s not like, “Here’s my kid, figure it out.” It’s like, “Here’s a 3 page print out detailing Alan’s diagnosis, meds and supports, and here’s another 3 page print out detailing Alan’s daily routine and now I will walk you through everything for the next 4 hours before I can trust that you know enough to be alone with him for any length of time.”

As much as I don’t want to just complain on here, I have to be honest, it has been a hard month. We had a nurse leave recently and on top of that Alan has been struggling with some new issues. Sleep has been a challenge, Alan has had a hard time managing a recent increase in mucus and it’s been sticking in his lungs more persistently lately, requiring multiple rounds of breathing treatments and lots of chest physiotherapy every day. It also causes problems with keeping his food down because he gets chocked up on mucus. And then his reflux has been worsening as well, meaning that food will just kind of come up more easily than it used to. The laundry is ridiculous. Last week he alone created 3 loads of it. That’s just in one week! Thank God we have an attendant who comes usually once a week and helps with laundry and such.

Emotionally, I am drained. It’s hard to process your emotions when you have these random nights where your child is struggling so much that you honestly wonder if he’s going to make it. I sometimes look at him and feel his fragility so immensely that it scares me. Then I lean in and kiss his sweet cheeks and wonder how long I will have to do so. I want to cry in these moments, but I also feel this strange longing for a life that isn’t centered around my special needs child. Then I feel guilty for even feeling that for a second because Alan is the most wonderful, precious soul that I have ever known. Still, sometimes I just want a break.

I watch the world around me keep turning so effortlessly. I don’t want to join in the things that are frivolous (unless it’s my guilty pleasure of reality TV… Bachelorette… Master Chef… Married at First Sight), but sometimes I want to just have some time to be me again, to not have to worry so much about someone so dependent on me. I feel awkward when friends and acquaintances ask me how I’m doing. Do you really want to know? Sometimes I’m partially honest, sometimes I deflect. “We’re ok. Things are a bit nuts. How are you?” I feel like that’s more appropriate than, “Well, I was up for an hour in the middle of night giving my son another breathing treatment and chest physiotherapy, followed by aggressive suctioning of nose and mouth, he vomited mucus and eventually went back to sleep I think, and then I had to train a fill-in nurse for half the day who, it turns out, cannot even accurately draw up meds, and we have two appointments tomorrow, my 3 year old is regressing on potty-training and I kind of want to crawl in a hole and die. How are you?”

OK, that’s it. I got my negativity out. Thanks, friend. I know that isn’t fun to read. And I also know that you probably have your own gripes and problems that you could vent to me about. I do wish I could hear those as well. We all have our unique challenges and no one is immune to suffering, not even those who seem to have it completely made. I hope no matter what is going on in your life and your soul that you are holding on to the hope of a better day. I know God has good plans and that He is working out His will in and through those of us who are submitted to Him. I know that suffering and trials are tools He can use to accomplish purposes we know little about. I am ok with that, even though it can feel like too much for me sometimes.

Who knows, maybe my next post will be all sunshine and roses? But how boring would that be. : ) Here’s hoping for a little more boring this month. “Lord, please bless my dear little Alan, and my Dean and Henry as well. Please help us Lord, and Jim too. We need Your help every day. We rely on Your Goodness and Grace. Please bless all who read this. Bless our trials and suffering. May they bring us closer to You and mold us more into the likeness of Your Son.”

Praises and New Music

Hello friends. How have you been? Good, I hope. If we haven’t been in touch you might be wondering how we have been doing for the past four months that I have been mostly silent on here. Honestly, we’re doing pretty good. Our sweet Alan always has multiple issues to monitor and we definitely had a rough patch of one virus after in March and April, one that sent Alan to the ER and got him admitted for a few days (and we now have a Pulmonologist on his team to help monitor his breathing issues), but currently, we are in a stretch where his issues are manageable and he is generally doing well!!

I am beyond thankful for so many things lately. One of the biggest is the HUGE victory for our family that God has brought about through an organization called Every Child ( I wrote in the last post that we were needing prayer concerning health insurance for Alan since we would be losing Medicaid in the near future due to Jim completing his training to become a Real Estate Appraiser (go Jim!) and we would be losing most of Alan’s private duty nursing care and who knows what else if we had to go on private insurance. It honestly looked like an insurmountable obstacle because the only way we could be sure that our family would get the resources it needed to care for Alan was to get him on a Medicaid Waiver program where he would be receiving Medicaid based on his diagnosis, not our family’s income, but the waiting list to even be considered for one of these programs is ridiculously long because Medicaid is so underfunded in Texas (basically the second worst in the country). The shortest waiting list was five years and the one for the really good program was fourteen years!!

I had talked with someone from Amerigroup, our Medicaid provider, about our situation, and she referred me to an organization called Texas Parent-to-Parent ( I called them and told them about our situation, and they referred me to Elizabeth Tucker with Every Child. I ended up working with one of Elizabeth Tucker’s associates, Kelley Ham. During our first conversation she told me that she knew exactly what we needed to do to get Alan on a Medicaid Waiver program and that all I needed to do was do what she told me to do, one step at a time, and just keep her filled in on every step and she would walk me through it. Those words lifted such a huge weight off of my back! And she was true to her word and a true angel for our family and our dear Alan!

I began talking with Kelley Ham in March of 2019 and we were able to get Alan on the Home and Community-Based Services Medicaid Waiver program (“The Cadillac of Waivers” as I’m told) in June of 2019! Now we don’t have to worry about paying for Alan’s private-duty nursing care or any of his doctor appointments or medications for the rest of his life!! This is a true miracle and answer to prayer for our family. I could never say how thankful I am to God and to the wonderful people who work at Every Child for blessing our family beyond belief.

This is Alan with spiked up hair. His nurse Diana is holding him and we are both cracking up, causing his smile!

We currently have nurses in our house 6 out of 7 days a week and it is such a privilege. I get to watch over, cook for and care for Alan, but I don’t have to always be the one to care for him and do the many things that are needed for him every day. My nurses give me the freedom to just be a mom to Alan and to Dean and Henry. For example, I get to prepare lunch for Alan, Dean and Henry, and then the nurses feed Alan slowly and carefully through his G-tube (he has a lot of digestion issues, so much care is needed) while I actually get to just eat my lunch and then snuggle my Alan for a bit after lunch and then attend to household duties or helping Dean and Henry with something while the nurse does some stretching with Alan or puts him in his standing frame. It is such a relief to be freed up to have a more normal life and even get to go out every now and then on the nights where we have night nurses who attend to Alan’s needs during the evening and overnight as well. What a blessing!

This is Henry and Dean who are beyond elated at the box of Easter donuts that nurse Diana brought over for us one morning. She blesses our family in so many ways.

To our nurses Diana, Menal and Jane I say, “God bless you and thank you!” To Kelley Ham and everyone at Every Child I say, “God bless you and thank you! Your organization is so very needed in this state!” And most of all, to God I say, “I am amazed at how You work Your wonders in my life and that You took what seemed hopeless and turned it into hope and a future that is bright! I am humbled and eternally grateful.” I know we will continue to have struggles and that things don’t always work out as well as they have for us in this situation, but I also know that God has promised to lead all of His children along, through all of the valleys and dark nights. His Presence and His Promises bring hope into even the darkest of nights, even if we don’t feel or sense it right away. He is at work. I’ve seen it, let me tell you!

There is so much more I could tell you, friend. Let me just say briefly that I have also been blown away by how much I have loved having these nurses in our home. I know for some it seems an imposition and that it’s hard to not just be alone as a family at times. I totally get that, but I also have to say, God has truly blessed me personally by getting to know these special, wonderful ladies.

For instance, our main nurse, Diana, is one of the most giving people I have ever met. She loves our little Alan more than I ever imagined a nurse would. And she is so passionate about giving him the absolute best care possible. She cares for his every need so painstakingly, she reads books to him and she spends a lot of time gently stretching him and helping him work on tummy time every day that she’s here (Wednesday through Saturday). I also love that we get along so well and have tons of conversations where we just share life together. We’ve even arranged it so that she can bring her son on Saturdays because he is close in age to Dean, and I watch over the three boys (she pays me a small fee, but less than she would have to pay for childcare otherwise) while she cares for Alan. It is such a win, win!! She is such an unexpected blessing!

I’m leaving out so many details and things I may get into in a future posts but today I just want to sing the praises! I also want to mention that I’ve decided I want to use this blog for updates on our family and Alan but also as a place to post some of my songs. Here’s a link: I’m a bit nervous about trying this out, but I’ve felt led lately to just try finding an outlet for my songwriting hobby. I don’t have good audio equipment for doing this, so the sound quality isn’t going to be very good, but I think I’m going to just go ahead and start posting songs and maybe someday down the road I can re-do some of the songs if I get some better equipment.

I’m better on piano than guitar, but right now I don’t have a keyboard and it wouldn’t work to use our upright piano for these videos (my husband helps me record the videos after our kids go to bed and the piano is out in the living room so it would wake them up), so for now I’m going to start with songs that I can adequately do on guitar even though I’m pretty amateur. I’m hoping to purchase a keyboard eventually. I’m also starting to go out to a few open mic nights around Dallas and I’m hosting one of my own at Sucre Cafe in Plano on the last Tuesday of the month. I’m pretty excited about actually doing some fun music things again and I truly hope that God will use me in some way through this outlet.

Months 9 Through 16

Hello!  I’m very happy to finally have a moment to write.  Dear friend, it’s been a wild ride lately.  I know this post will be way too long, but it is here for those who are interested in knowing more about our journey.

For those new to the blog, our precious third son, Alan, has Schizencephaly, meaning he has clefts (holes) throughout his brain.  He has seizures that are very rare thanks to his meds, he can’t see very well (was diagnosed with a condition called Cortical Vision Impairment), he can’t move very well apart from a few jerky arm movements, at 16 months has trouble holding himself up even when supported in a highchair, is fed primarily through a feeding tube due to feeding difficulties, sometimes coos, smiles THE most beautiful smile usually about once a day, loves his mom and dad and brothers, has a very calm, sweet, brave and stalwart personality, and is completely awesome.

August 2018 (10 months old) – Alan was doing pretty good this month until he contracted a run of the mill cold virus that did a number on his breathing.  It came on really suddenly.  I used the albuterol we had gotten for him in June when he had Bronchiolitis, but despite all my efforts, his breathing got more and more labored until we finally decided around 2 am to take him into the ER at Children’s Medical Center in Plano.

After a very scary 24 hours involving tons of docs and nurses freaking out when we first got there and Alan having to wear a really weird looking CPAP mask for a while, he quickly started turning around and we were back home within 3 days of our admission. We were sent home with oxygen tanks and this weird “OXYGEN IN USE” sticker we had to place on our front door in case of a fire.  Life went on as usual.

Alan in the hospital in August, 2018, recovering from a cold virus

September – November 2018 (11 – 13 months old) – I believe September was the month I started taking Alan to outpatient physical therapy twice a week in Rockwall, about 25 minutes away.  This was a good experience primarily because I learned some really good stretches I could do with Alan at home to keep him from getting too stiff.  I also loved getting to know his Physical Therapist, Erin, and hearing her speak about her and her husband’s  struggle with infertility and how God was using that to shape them and work through them to others who are struggling.  I found her attitude inspiring and refreshing.  I know a bit about that struggle and have sisters and sisters in Christ who have struggled much with this brand of heartache, so I’m sure she must be relying on God’s strength in order to walk through this and not become bitter.

I believe October was the month we switched from Physical Therapy to Feeding Therapy, this time at a clinic a little closer to home, in Allen, Texas.  Alan was eating purees every day and drinking a thickened bottle of formula, but we wanted to see if he could start eating more effectively with some support.  I quickly grew to love his feeding therapists as well!  Alaina and Nicole were like angels for Alan.  They loved him and did their best for him, using e-stim therapy.  He did pretty well the first month and a half.  Sadly, towards the end of November, he started having more issues with swallowing solid foods.

December, 2018 (14 months old) – By the second week of December I had to face the truth: Alan’s ability to swallow was going downhill quickly.  I still don’t know why this happened other than his Schizencephaly, but I realized at one point that I had gone from casually putting all his baby food through the food mill to double-pureeing all of his food through the mill and still worrying that he would cough or choke because he had started coughing and choking on nearly everything I tried to feed him other than his bottle.

He was always able to take a bottle.  However, he did this pretty slowly, so it wasn’t enough for him to thrive.  He was able to take about 12 oz of pedisure (thickened) a day and went from eating three pretty decent solid meals a day in October (although honestly, it took me at least an hour to feed him each meal) to taking about half of what he had been taking by mouth and we would just have to stop because he was coughing and choking too much, despite a ton of attention being paid to the consistency of the food, and despite the fact that we were going to feeding therapy twice a week.

During one of his feeding therapy sessions where he was choking on nearly every bite, his sweet therapist, Alaina, looked at me sympathetically and said, “Have you guys thought about getting a G tube for him?”  She told me lots of positive things about these types of feeding tubes.  Her compassion and concern for Alan and for us was evident when she added, “I’m sorry that this is your normal.  It shouldn’t have to be.”

After finding satisfactory answers to my initial fears of having a G tube (Gastric tube) placed (I was worried that this would hinder his ability to one day eat by mouth more successfully but I was told by many that, on the contrary, having a G tube would allow Alan to relax and be able to enjoy his experiences of taking food by mouth instead of having to associate eating with a fear of choking), Jim and I quickly got on board and were able to having him admitted to Children’s Medical Center in Dallas in order to begin the process of getting a G tube on December 12.  We had no idea the series of unfortunate events that were about to unfold along the journey to getting Alan his much needed G tube.

The first thing they did in the hospital after all the initial questions and paperwork was to put an NG (Naso-Gastric) tube in Alan.  Of course he did not appreciate having a tiny tube placed through his nose, down his throat, and into his stomach, but they explained that we had to do this in order to see how he would tolerate feedings directly to his stomach and to find out how much milk he could tolerate and on what timetable.

I informed the hospital staff that Alan was currently consuming about 12 oz a day of pediasure and that he had been eating three solid meals a day up until about 3 weeks ago when his ability to eat went steadily downhill.  For some reason they decided that we needed to try to give him about twice as much formula as he had previously been getting by feeding him four times during the day and also overnight on a low dose on the feeding pump for 10 hours.  I felt fairly sure this was not going to go well because it just seemed common sense to me that no one can just up and start eating twice as much as they had been eating because it would be too big of a shock to the system.  But they insisted that we try it because he was underweight.

The first 24 hours of the new feeding schedule seemed to go alright, so I started thinking they knew what was best for Alan better than I did.  I think it was a day and a half after we were admitted that he came down with a fever that lasted over 2 days.  They still wanted to continue with the feedings but I convinced them to at least give him a few feedings of half formula and half pedialyte since he was so sick.  Still, he was vomiting every few hours.  It was unclear at the time if he just had an upset stomach along with the fever, or if he was vomiting due to being overfed.  It was so confusing and stressful.

We were admitted on a Wednesday evening and the plan was to stay over the weekend and have his G tube surgery on Monday morning.  However, his fever didn’t break until Monday morning, so surgery was cancelled.  We were sent home with the NG tube still in him and with a doctor ordered feeding plan that still involved twice as many ounces as he had been taking in a day prior to being admitted.  We had no make up date set for getting the G tube placed because the holidays were just around the corner and we were still hoping we could travel to see family.

Once we got home, it quickly became clear that we wouldn’t be traveling north to see either of our families over the holiday break.  It took us about a week to figure out, but we eventually stopped using the pump altogether in favor of four bolus feeds a day, and I quickly began experimenting with getting very thin purees to go down the NG tube.  For some reason, Alan did not tolerate pump feedings very well at all.  Something about the experience made him much more likely to vomit than being fed in our arms or in his highchair all at once.

One time while feeding him in his baby chair with the pump, he vomited so severely that the NG tube actually came up from his stomach and was hanging out of his mouth.  After I realized what had happened it took everything in me to not completely freak out and just calmly remove the tape holding the tube to his cheek and pull it out through his nose.  Many experiences similar to this one convinced us that the pump and Alan simply did not get along.  Also, a completely liquid diet did not seem to be working well for our prone to reflux Alan.  We tried a food-based formula called Kate Farms and that seemed to help a little, but once I started mixing in some baby food we noticed things get even better.

Alan with his favorite Christmas present

I would highly recommend the book “Complete Tubefeeding” by Eric Aadhar O’Gorman for anyone with a child with any type of feeding tube.  He has an invaluable section in that book about different herbs and spices that are very helpful for digestive issues, including reflux.  I have been making and giving Alan a homemade herbal tea with things like Anise, Fennel, Caraway, Chamomile and Ginger everyday ever since I read this section.  He also has a wealth of useful and interesting information related to every issue imaginable related to having or being a “tubie.”

One of the biggest tips I ran across in my early days of trying out a “blended diet” (feeding tubies real food purees) for Alan was so simple and helpful.  Here it is:

When using a blended diet, put everything you want to feed your tubie through a fine mesh strainer before pushing it through the syringe and into the tube.

This was such a “duh” moment and a life-changing moment when I first read this tip online somewhere.  One of the main problems with a blended diet is the issue of clogging the tube.  But I have found that this issue is pretty easily dealt with by putting everything first through a fine mesh strainer.  We have still dealt with a few clogs, but they haven’t ever been all that hard to resolve through simple means (pushing some liquid through or back flowing the syringe to remove the clog or smacking the tube against a hard surface in order to dislodge the item).

I cannot recommend a blended diet highly enough.  No matter what some professionals may tell you in the hospital, I can assure you that a blended diet has been the right choice for Alan.  Having real food in his tummy, including a small amount of spices that are very helpful for digestion (turmeric, coriander, cinnamon, etc) has reduced his reflux to the point where we went from being quite certain we wanted to have a nissen fundoplication (procedure where they wrap part of the stomach around the lower part of the esophagus in order to prevent reflux and vomitting) performed at the time of his G tube surgery, to deciding that that would not be necessary after all.

We struggled through January, having to use tremendous force just to get the pureed food to go through the long and tiny NG tube three times a day, and simultaneously dealing with a lot of coughing with mucous and all sorts of different illnesses popping up for Alan and our other two boys.  We were prescribed a suction machine that we are still waiting on for Alan to help clear his airway more easily.  It is still a struggle, though much better now that he has his G tube and his airway is no longer aggravated by that NG tube.

FINALLY, on January 31, Alan got his G tube!  Dr. Megison at Children’s Medical Center in Dallas did a terrific job.  Alan’s feedings have been MUCH easier ever since, praise God! Alan also had a supraglottoplasty, which helped with his noisy breathing (laryngomalacia) and also helped to reduce his reflux.  We were able to go home about 34 hours after his surgery.  It took about a week before he didn’t need any pain meds, but his recovery was quite smooth, all things considered.

Currently, life with Alan is immensely easier than it was even before his ability to eat by mouth declined.  This is in large part due to his new nurses.  After he came home from the hospital with his NG tube, we started the process to start getting private-duty nursing care.  We now have two different private-duty nurses who help us care for Alan in our home Monday through Friday, for 12 hours a day.  It is an incredible blessing a a huge relief to our family to have this help.  The icing on the cake is that I also truly love these two amazing women and feel blessed to not only have competent nurses to care for Alan, but two new friends who help me balance out the male to female ratio in my house!  They have helped me and Alan tremendously.

Alan also got his wheelchair recently, and that has been very helpful.  He has a severe level of cerebral palsy (recently learned there is a scale from 1 to 5 and Alan is a 5) so he can just barely hold his head up when sitting but definitely can’t hold himself up well enough to sit up without support.  That is why they recommended we get a wheelchair instead of an adapted stroller.  It was clearly the right move and we love being able to take him out more easily, and also love having such a well supported place for him to sit for feedings and just throughout the day here and there.  It easily tilts forward and back to relieve any pressure that might be hard on his pelvis over a long period of time.

The biggest mountain we are currently still climbing is the matter of insurance.  You see, ever since we moved to Texas the kids have been on Medicaid because Jim has been in training to become a Real Estate Appraiser, which is a long process that doesn’t pay well.  Jim has recently become certified and will soon start to make more money, praise God!

However, this means that Alan will not be receiving Medicaid for much longer and it turns out that Texas is one of the worst states in the country for this particular issue.  We are currently on three different Medicaid Waiver waiting lists and the shortest one is five years long!  A Medicaid Waiver would definitely be the best option for our family (mainly because private insurance has a penchant for denying things like much needed private-duty nursing hours) so I am currently in contact with some ladies with an organization that helps families like ours wade through the mess that is trying to get a Medicaid Waiver approved for your child in Texas.  More to come on this.

Thank you for reading and for caring about us and precious Alan.  I just have to add at the end of this long post that, no matter how much stress and work we go through on his behalf, Alan is so worth it.  If you ever get a chance to meet him, you would understand.  Anytime you see a person with disabilities of any kind, please bear in mind that they are just as valuable as the “competent” and “capable” among us.  I’m not sure that they aren’t actually more valuable.

I believe that many people with disabilities understand more clearly than most that life is not about ease or comfort or accomplishments.  They understand that we are blessed just to be alive and to have others who love us. God sees all of our struggles and loves us in the middle of them.  He is able to bless us and help us in the midst of and in spite of all our many insufficiencies.  He loves us and one day He will make all of our struggles on this earth a distant memory.  May God bless you as you persevere through whatever struggle you may be facing now, trusting Him to deliver you in His perfect time, for His glory and good purposes.