Thursday, October 31, 2013

Nothing To See Here.

Martha has a respiratory infection. Her first serious one in almost two months, maxed out on breathing treatments and steroids. I don't want to get into details over how Martha's URI's affect her and the rest of the household, but they are most definitely dramatic. High fever, wet cough, dry cough, vomiting, choking, or whatever other symptom pops up, both Mark and I are in a constant state of trying to reassure one another out of our panic.

"She's okay, right?"
"Are we still in the yellow zone? Or have we moved to red?"
"Can we make it through the night?"
"If we brought her to the ER, what would they be doing differently than what we can do here?"
"Fingernails look okay? Lips look pink? Toes look good?"

Respiratory infections are by and large just exhausting. We don't sleep because she can't sleep. The added secretions mean a lot more linen and outfit changes. Keeping on top of the breathing treatments means taking the time to sit and do them...around the clock.

The particular URI that presented itself yesterday came with a little surprise. Martha's pump started malfunctioning. After using my whole bag of tricks, I realized it wasn't the pump, but the actual button inside of her was clogged.

This is incredibly complicated. Holy friggin smokes.

Martha's formula is bypassed to her small intestine. She has separate port on her Mic.Key button that goes into her stomach, but it's strictly for meds. If the content in her stomach is too great (like...more than a few teaspoons), it all comes up, she aspirates and winds up with pneumonia.

In theory I could and DID use this port when I absolutely had to, but it runs a huge respiratory risk, especially when Martha is already up coughing and gagging all night anyway. To route the formula, even at a rate half as fast, makes her cough exponentially worse. She doesn't eat enough to sustain herself, and when she's sick she can't eat at all. The clock is ticking.

Using my googling power, Mark and I spent hours last night suctioning with syringes, pumping hot water, flushing and re-flushing the night away. There was a short-term remedy, but today we're back at square one. A call to Martha's gastro specialist gave us another idea before ditching our Trick-or-Treating plans for a road trip to the Children's hospital for a replacement procedure.

They suggested a little acid to dissolve the blockage. You know, just pump the baby's tube with a bit of Coke. I took the bait, and that's my current strategy, and as negligent as it sounds to send Coca-Cola meandering through my daughter's intestinal walls, if it means I can pump hydration and nutrients back in (we are terribly behind...), then it's worth a shot. My very last resort is a very small amount of Drano, I mean "Clog-Zapper" left at my disposal to pump in Martha's tube. Although my guard is on with this product with the label telling me to use gloves and eye protection when using. Like whoa.

My plans for today, tomorrow, and indeed the entire weekend don't include five hours in the car for a five minute replacement procedure. While I wait for the Coke to erode the minute french size of my daughter's tube, I really hope our efforts produce some results. Round one was a loss, but I'll try and try again.

As I remarked to Mark at a painful hour last night whilst surrounded by medical supplies and prescription drugs, "I can't believe they're letting us do this."

Tuesday, October 29, 2013


As always, life is wild. I've been blogging, but not posting my blogs, if that makes any sense. I've had this habit recently when I've written a thought-out post in the evening, only to chicken out in the morning and never posting.

I worry about the way our life is portrayed by me on this blog and if I'm giving an accurate picture. Sometimes, someone who has read this blog but isn't intimately involved in our lives will see us in person and be pleasantly surprised that it wasn't as severe as they had imagined. With others it's the opposite affect, and they don't understand the situation until they're in the thick of it, and realized they underestimated.

Needless to say, I'm trying very hard to be honest in my posts and especially in my feelings, which is difficult, because if I write something brutal and gut-wrenching, our lives might seem a bit grim, when in fact, it was only one post regarding one aspect of an event. Ho hum. I'm trying to iron out the kinks and have the courage to write prudently and accurately.

One thing that I have been thinking about a lot lately is our home. Our house doesn't photograph well with my camera phone, which is why I don't post house pics on our blog. But, I love our house. Love it. It's a century-old Craftsman style, with hardwood throughout, built-ins, beamed ceilings, and three stone fireplaces. It matches my taste and era. The kitchen cabinets may be over 60 years old, and there is only one bathroom, but we've overlooked it because we just like the rest of the house so stinking much.

But we have problems looming ahead. Our 4-square home has all the living space on the main floor, and the bedrooms and bathroom up a mighty stairway. Our nearly 11 month old daughter isn't sitting or even rolling yet. She will soon have adaptive equipment in the house. Her bedroom is upstairs, her things scattered throughout the house.

When we first moved in, we were comfortable with the idea that we would eventually remodel our kitchen once our children successfully destroyed the remaining functioning parts (they have a good start), but now that plan seems short-sighed. The only thing that changes right now is our ideas, and how much money it might cost to implement those plans.

There is no emergency here, as we'll be able to carry Martha for quite awhile, and the truth is that no one knows what next year, or the next year may look like. We only anticipate that her needs will be best met without stairs involved with getting her to the bath, crib, and toys.  

Life, and God work in funny ways. Mark and I had our eyes on this house for the better part of five years. We never once considered that it might not be functional for our family. I found out I was pregnant within a month of us buying the house, and now we have Martha. I won't question why, because too many of these choices were made with earnest prayers.

Another part left to trust, another knot waiting to be untied.

Tuesday, October 15, 2013

Babies and Dolls.

One of the best way to get Martha to smile is to have her look at faces. If she can't have a smiling face to look at while she's awake, a close second is a baby doll face. She gets SO excited to see a doll face and tries so hard to hold the baby doll and bring it close. 

We now have several very small baby dolls for her to play with, but she also especially loves two dolls kept from my childhood.


And Lisa. 

What I hadn't quite expected when I pulled Kimmy and Lisa out of the dusty box they'd be stored in, was that it would be Paul and Michael who would also lay claim. Paul diligently found diapers, and then outfits for each of them, and then a suitable blanket for the chilly weather. 

The remainder of the rainy morning was spent interchanging the baby dolls from swing, to bouncer, back to the rocking chair, and then to the couch for a quick cuddle. 
I know that boys play dolls, and that it's not an incredibly huge deal, but this is the first time I've seen it in our home, with the boys playing together. My Paul has such a beautiful imagination that it's been a gift to watch him lead his little brother in pretend play. 

Hope you're surviving the rain! We threw in a nice, long lunch at a restaurant, too. Hope I don't run out of ideas for the afternoon!

Friday, October 11, 2013

Wrapping It Up.

1. I received a great phone call today from the pediatric medical supply company that Martha's tubing supplies come from. Her insurance will now begin covering her Neocate. I was able to get a month's supply from WIC on Monday (I was in a hurry before the funds ran out from the shutdown), and now I can rest easily knowing that from now on (fingers crossed), getting Martha's formula will be as simple as a phone call.

2. I am patiently waiting Luke's arrival home from school. It has been a good week, but I'm looking forward to having him in the house all weekend.

3. I'm bidding on a lot of used toys on ebay for Martha. They light up and make noise, which, with my other children, would have been out of the question. But I see their usefulness with Martha, and I'm excited thinking about how well technology is able to help young children communicate. If she can learn the concept of pushing a button to make sound, then we're set.

4. Looking through my closet, I have exactly one pair of jeans I like. It shows my age, but I really like wide-leg, trouser fit jeans. Do you have any idea how hard those are to find? I won't wear skinny jeans, matchstick jeans, or any other style of jeans that tapers at the leg. I just can't do it. Have I mentioned I'm only few months from turning 30? Are wide leg the new Mom Jeans? I pray not, I dearly love to look like I know what I'm doing.

5. In August I went full-blown Paleo. I felt great, lost a few pounds quickly, and had an enormous amount of energy. Mark was in it with me, too, and I had fun making different pureed soups and spaghetti squash; green smoothies. We fell out of it because we both love bread and potato chips. Ho hum. After a week of carbo-loading lamenting my eldest's stint at school, I feel like the big el crappo. I'm going to try Paleo again, or a modified version of it that includes Oreos, and see if I have a little more energy. We might decide to train for something, too.

Have a great weekend!

Tuesday, October 8, 2013

That One When He Went to School.

My oldest boy started school this week.

You, as in the brick building with all the children inside.

As I've written before, I can't remember a decision that every caused Mark and I more anguish.

But, once made, it is a decision we found both necessary and right. We weighed pros and cons for months. I sought the advice of people I trusted with the honesty of my heart, and perhaps I was waiting for someone to just come out and tell me what to do.

No one forced our hand or tried to convince us of what would be best for our family. That was our conclusion to make. Because, we could have done many things. I could have decided to "unschool" the kids for a year or two, or have a 2-3 day homeschool week, or even enlist more help to delegate Martha's appointments and household work.

I knew I could do it; that it was possible with a certain amount of creativity and sacrifice, but I wasn't sure if that's really what I was supposed to do.

So, we prayed very hard, and very intentionally. My previous post, "Of Miracles and Madness" details that journey.

When it came down to it, I was very tired and pulled in too many directions. I am a huge believer, and supporter of homeschooling, but this wasn't what I wanted it to look like.

It came down to this.

I was told recently that our lives will likely take about three years to slow down; stabilize. That in three years, we should have a better idea of our daughter's health and development, that we should see things coming. Her growth will slow, she'll be stronger. We'll know that much more.

But in three years my sweet second son will be 7. My baby son will be 5. If I stay the course for three years, try to tough it out, I will miss it all....them. When I think of how well-prepared my oldest was for homeschool work, how he shows leadership and kindness, and all the time I've invested in his care and formation, I think, "How can I not do the same for these two sweet boys?" "Will I forget them in the mix of trying to do everything I can for my oldest and youngest?" How can I keep delaying their desire to read stories and build block towers, to sit on my lap and snuggle for no reason at all?

I only get this one chance with them. I'm not willing to let it pass.

My views on homeschooling are indeed very strong. But they aren't as strong as my beliefs about motherhood, and my role to each of the children and what I owe them right now, in this family.

What my children need from me in this moment is to be their mom. For however long...with all that entails. I'll give up one thing to be better at the other thing. They deserve that from me, they deserve the best I'm able to give. And I'm bold enough to say that I am doing the right thing here.

Putting my children into school  never once entered my plans before. I refuse to think of this as a defeat, however. We are deciding, with God's grace, to take this decision in stride. The second I start to see our situation as something to grieve, I'm toast. I won't go there, I refuse to go there.

Instead, I'll say "Let it be done," and echo my somewhat reluctant "Fiat" and trust with confidence that the Lord will continue to carry us through.

With Joy.

Monday, October 7, 2013

Of Miracles and Madness.

I was sitting in the doctor's office with Martha on Tuesday. We were following up with her Genetics doctor, and the Genetic Counselor. They asked me how I was doing.

"I'm doing well," I said honestly, "But I wish you would have told me, when I was sitting in this very place six months ago, that our lives were going to explode."

They nodded their heads in agreement. "We like to let parents discover that on their own."

What a discovery that has been for my family. Did they know by looking at me? Something was happening with my heart.

The heart of motherhood.

I had not been at peace. I'd walked around with tears in my eyes, couldn't sleep, and began to seek what in my life was causing this incredible heaviness that I could not lift. I wasn't depressed. It was much different than that. Things just weren't right. 

I thought about the people I knew who took care of themselves, and made time for exercise and entertainment; hobbies. People who breathed and sighed, who were carefree and enjoying their families and children. How would it feel to take delight? To not be I envied them in a way far different than jealousy. It wasn't so much that I wanted that, but that God wanted it for me. God desired my peace.

And this is where it gets tricky. Because I believe in God, Jesus the Christ. I believe every moment of my life is ordained by God's will. So I prayed. I prayed, and prayed, and prayed. I asked others to pray for me.

"I'll do what you want, Lord," I would pray, "But you MUST tell me what to do." 

"Lord, you have put our family here, and  I have to, I must, I insist on believing that You have not abandoned us. Lord, I'm doing something wrong here, I know that, but you must tell me that if we follow your plans that You will stay with us, that You will carry us through. I need to know that Your Will for our family is bigger than my own aspirations. Make me believe it, Lord. Force me to believe it."

I prayed and waited, and surrendered.

St. Therese is dear to many Catholics, including myself. I don't say this lightly, but this Saint has worked miracles in my life. Her feast day was last Tuesday, the same day I sat in the Genetics Clinic wearing the face of a mother who knew too well her own limits.

What nobody knew on Tuesday, is that I had been praying for a miracle to occur on that day. I prayed for a miracle. I prayed...for Roses.

I had a decision on my heart that I did not want to make. I knew what I wanted, I knew my goals, my dreams for my family. If God had something else in mind, He'd better make it so clear to me that I could not deny it any longer. (I'm a stubborn daughter like that)

So, you could imagine my utter shock, after spending the whole day away from my family and four hours in the car, when I walked into my house at dinner time, and the first thing I saw was a bouquet of SIX PINK ROSES, sitting on my kitchen table in a vase.

I was trembling as I opened the card, believing that the logical inscription on the card would say "Go for it. I'm taking care of all of you. Love, God."

But it didn't say that. Instead, halfway across the country a friend had been praying for my family's intentions. She didn't know of my wager with God and St. Therese, but felt her heart move to send a rose for each member of my family along with her prayers on the Feast Day of St. Therese.

I can only describe to you the peace that entered my heart at that moment. To know, after so much questioning, that God was indeed watching my over family, that He has NOT abandoned us, and that He knows, more than my best intentions, what is best for my family. Despite my fatigue from the day, I was invigorated. We're going to do what God wants, I told my family. Because I have to trust.

Why did God answer my prayer?  I am not deserving of such a miracle, but I humbly learned that God rewarded my desire to be faithful, and my total reliance on Him when I no longer knew what to do. Indeed, God works in my life the best when I am the most desperate.

Today brings peace. All of those prayers.........thank you from the sincerest depths of my heart.

Thursday, October 3, 2013


The term "positioning" is a new one for me. It's new, but  important. Positioning is the way a person supports their body. This is important for a whole slew of health reasons, probably more than I'm even aware of.

In our situation, positioning is vital for Martha's entire digestive tract and aspiration. As she grows longer and heavier but continues to be delayed in her milestones, positioning becomes necessary to prevent scoliosis and the specific way Martha moves her body. She is followed closely by a doctor who specializes in movement, and who is constantly aware of the unique ways in which she moves her body.

So, in June, we were very happy that our PM&R doctor (Physical Medicine and Rehabilitation), referred us for a seating evaluation for an adaptive chair that would position Martha correctly with her spine and head aligned, and her arms and pelvis supported. How wonderful!

The process quickly turned into a disaster. I wasn't getting any communication from Medical Supply, we waited weeks and weeks to see a demonstration chair (which is required for insurance reasons), and my phone calls went unanswered. Finally, after nearly 10 weeks of waiting, we had a short demonstration in our home with an adaptive chair.

After our demonstration in August, I waited four weeks with hope that insurance pre-authorizations were being run, and that letters of medical necessity were being written.

Finding it odd once again that I hadn't been contacted, I called Medical Supply. I was rerouted to a different "Rep" for the company. I was then told on the phone that the Rep we worked with was no longer with the company and that we needed to start the process over somewhere else.

No progress had been made on my daughter's chair. For three months.

What a waste.

I put a lot of emotion into this adaptive chair, because I knew how much it would impact my daughter's quality of life. Don't they know that? Don't they know that I bring our stroller into the dining room every night so our daughter can sit with our family during dinner? Don't they know that she's 10 months old and the only place I have to set her down is a bouncer seat that my other children outgrew by three months old?

Medical Supply emailed me back all the referral information that I had given them, as well as the line "We're sorry, and thank you for your understanding." I sent a scathing email back thanking them for the apology, but told them in very blunt terms that they absolutely did not have my understanding.

I wasn't unreasonable, however. Because that's where things kinda suck. I can't threaten, and there are no consequences for the person on the other side who let Martha slip through the cracks. I'm at their mercy. If they don't do their job, I can tell them how terribly disappointed I am, but it doesn't change a thing for our predicament.

Yesterday, a week after our fallout, Martha had another seating evaluation in a different location, different vendor and different products. What a difference! I have my fingers crossed that within three months Martha will be sitting in her new chair!
 This is the style of style and brand of Martha's new chair, although this picture is not exactly what hers will look like. Martha's will have a strap across her chest, supports at her pelvis and neck, and be smaller all around.

The very cool thing about this stroller is that the seat detaches and can fit on top of a frame that shifts height. She'll be able to slide up to the table, or as high as a breakfast bar! There is an attachable tray, and a canopy. What a new world for her!

In addition to her positioning system, Martha is also getting this adaptive carseat. I saw this carseat in person, and wow, it's huge. The material is soft and fuzzy, and the model I saw was brown, so it looked just a teddy bear. This system will fit her to 100lbs. We have a pretty big vehicle, but I've never seen anything like this before. Once we have it I'll have to show more pictures so you can actually see how intense this system is.

There are more posts I want to write about this specific situation, because it helped me learn a lot about this process. You, dear reader, will likely never attempt to acquire a pediatric adaptive positioning chair, and it was a first for me. Despite me being a squeaky wheel, it wasn't enough in this case. I will know better next time.

Here's to getting our little one sitting!