You should see the other guy

Last Tuesday, Hope had a broncospy scope. She was put under anesthesia and her ENT looked in her airway for problems and/or progress. Sorry I haven’t shared this or the results. It’s been a busy week and it’s hard to type it all on my phone.

Hope’s airway looks good except for a granuloma in her airway above her trach. It doesn’t appear to be causing any issues right now, but is blocking 50% of her normal airway and would have to be removed if they took the trach out.

The ENT now believes that her inability to manage her secretions is neurological and not congenital – meaning it isn’t something she can just outgrow by getting bigger. The trach is essentially treating symptoms (excessive secretions and aspiration) and if it were removed at this time, her lungs would fill up and she would drown. As of right now, no changes will be made. We’re still hoping to get her on an HME valve sometime in the near future (it’s basically a humidification filter that wouldn’t require her to be connected to anything), but she has to be off of oxygen for that. We had her weaned to the minimum amount during the day, but since she got pneumonia again a couple weeks ago and a nasty case of bronchitis now, she’s on more oxygen than she’s ever been on. It seems as if we are moving in the opposite direction. It is somewhat discouraging, but we continue to trust God.

Today is Hope’s birthday. The Lord revealed something to me today – today is a victory! I woke up this morning looking like I’d been punched in the face after a long, hard night of her bronchitis. I jokingly said to my husband, “You should have seen the other guy.”

I then received messages from my mother that she had been praying since 2am without even knowing anything was going on during the night (God often wakes her to pray like this). She also sent me this scripture:

Keep a cool head. Stay alert. The Devil is poised to pounce, and would like nothing better than to catch you napping. Keep your guard up. You’re not the only ones plunged into these hard times. It’s the same with Christians all over the world. So keep a firm grip on the faith. The suffering won’t last forever. It won’t be long before this generous God who has great plans for us in Christ—eternal and glorious plans they are!—will have you put together and on your feet for good. He gets the last word; yes, he does. – 1 Peter 5:11 MSG

God revealed to me that a spiritual battle is waging, and though my swollen face has a physical cause, I feel it is also spiritual…physical evidence of a spiritual battle. You see, Satan wants to destroy my child and my family. He has set out to destroy her from before she was born. Many of you have told us over and over, and we have said it ourselves, “God has big plans for her!” Well, guess who else knows that? She has touched so many in just her first year, and she can’t even talk yet! Just wait until she gets her say! So yeah, he has tried and is trying to destroy my child…but what the devil meant for evil, the Lord is using for good!

I hold to the words the Lord spoke to me back in July when we were making the gut-wrenching decision whether to go through with decompression surgery to relieve her Chiari malformation, and He reminds me often – “I’ve got this!” God sees the big picture. God saw 6 months down the road when the MRI would show that she has NO Chiari malformation. I see this moment. He sees from beginning to end and on into eternity. He reminds me of this as my human self gets weighed down and burdened for her suffering. When I don’t get the answers I want now. That still, small voice reminds me again, “I’ve got this. I’m in control. Let it go. Rest child.”

Rest. Something I could really use right now. Will you continue praying with us and for us? Help us fight this battle.

 

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Created for a purpose

“Before a young couple is faced with the hard news of disability, will they see children with disabilities in your church? Will they see mothers and fathers with disabled children acknowledging the pain yet standing in the strength that God provides?”

This is why I write this blog. This is why I write and speak so honestly. This is why I call myself a missionary.

To read the rest of this post by John Knight for Desiring God – go here.

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“As he passed by, he saw a man blind from birth. And his disciples asked him, ‘Rabbi, who sinned, this man or his parents, that he was born blind?’Jesus answered, ‘It was not that this man sinned, or his parents, but
that the works of God might be displayed in him.'”

~John 9:1-3~

One huge paradox

I’ve felt for a long time that I was called to missions.

I know we are all called as Christians to spread the gospel, but I felt a calling to foreign missions. It was a quiet passion long before I met my husband – who thankfully shared the same passion. In the time since we’ve been married, every time the subject has come up at church and the pastor has said something along the lines of “Stand up if you feel called to missions,” we’ve never even had to discuss it. We both have stood up. It’s something that we both knew was in the future and we were just waiting for the directions.

I knew we had a purpose. I knew one day God would “send us” somewhere special. Somewhere foreign – possibly even remote.

I just didn’t know it would be here.

Every time I hear stories from missionaries or see images, that desire arises, but then I remember – we can’t go. Not right now. Not with our little girl.

Somewhere in that longing though, God spoke. I don’t know when it was. I don’t remember. I just know at some point I began to hear, “You’re already there. You’re in your mission field.”

I felt this, but I didn’t know how to explain it…or even fully what it meant.

Until today.

A dear person gave me a fabulous book this past Christmas called Kisses from Katie. I just finally began reading it.

You want to read this book!

You want to read this book!

The Lord made my “mission field” clearer to me in the pages of this book, and I immediately felt inspiration to share.

While I was reading about Katie’s conflicting experiences as she adjusted to her new life in Uganda, God reminded me of this story I had shared, in which becoming a special needs parent is likened to landing in Holland when you thought you were on a plane to Italy. As I read her story, it was mine. Different place. Different circumstances — but my story.

Allow me to share, as I replace “Uganda” with “special needs parenting”:

If I had to summarize in one word my first weeks and months [as a special needs parent], it would be contradiction. The physical environment of [special needs parenting] is one huge paradox: amazing, breathtaking beauty juxtaposed  against immense [hardship] and desolation. My life–especially my emotions–hung in the balance between absolutely loving my new life… and battling severe loneliness. Not a single person around me understood anything about my life, my culture, or my background. Their frame of reference was so different from mine that even the most detailed explanation hardly helped them understand or relate. Most of the people around me didn’t speak my language, nor did I speak theirs. This communication vacuum left me feeling isolated and forced to work much harder to build meaningful relationships

…During my early days here, I was learning so much…My horizons were being expanded in the most amazing ways; my perspectives were changing every day; and my faith was being challenged and stretched. All of this was so exciting to me. I didn’t want to admit that, in the midst of such a wonderful and invigorating experience, I sometimes felt tangible pangs of loneliness when I thought about how many miles away I was from the people I loved.

Even though I cried often…I didn’t want anyone to know that I sometimes longed for my familiar home while I reveled in the newness of a country so unlike anywhere I’d ever been. I didn’t want to tell friends and family that I could dance and sing and play with children all day long yet collapse in tears at night in the privacy of my…room. I could praise God with all my joyful heart and then later pour out my heart to Him with frustration and weeping when no one could hear.

The contradiction comes when I realize that all these experiences and emotions are real. The happiness that gave me chill bumps was as deep as my loneliness. My sense of certainty about being exactly where God wanted me was solid, but just as firm was the fact that I wondered at times what on earth I was doing here. The frustration that threatened to overtake me on some occasions was just as deep and true as the unbounded joy I felt at other times. I loved my new life; I truly loved it. But compared to the life I had been living, it was hard.

There were many moments when the only way I could keep going was to try my best not to look back but to look only forward, relying on God’s perfect plan. Like so many  other things, this wasn’t easy, but it was the key to conquering the mountains of difficulty that arose on the landscape of my life.

Despite the obstacles, I felt a surprising level of comfort living [as a special needs parent] most of the time. I felt I was born to be there, and in many ways, living there seemed more natural than living in my native country. I had the unexplainable feeling, a settled knowing, that I was where I was made to be. I knew deep in my soul that I was home. (Davis, 2011)

I have questioned God – “What about this desire? This calling? I thought you wanted us involved in missions.”

I kept hearing, you are.

“Yes, God – but foreign missions.”

I’ve waited for the answer. Thinking the silence meant to wait.

Today he answered. This is foreign.

This “land” is foreign. It is foreign to me, but this is different than an other “foreign” place. There are no “native” speakers or indigenous inhabitants. Practically every person that has ever “moved” here has not done so by choice. No, each one is foreign – often landing here quite suddenly and with little warning – and I get to be a missionary in this foreign land. This land where, though no one wants to live here, once you settle in, you find there is beauty in it.

Yes, I am a foreign missionary.

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And he said to them, “Go into all the world and proclaim the gospel to the whole creation.” ~ Mark 16:15

For “everyone who calls on the name of the Lord will be saved.” How then will they call on him in whom they have not believed? And how are they to believe in him of whom they have never heard? And how are they to hear without someone preaching? And how are they to preach unless they are sent? As it is written, “How beautiful are the feet of those who preach the good news!” ~ Romans 10:13-15

From everyone who has been given much, much will be demanded; and from the one who has been entrusted with much, much more will be asked. ~ Luke 12:48

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Davis, K. (2011). Kisses from Katie. (pp. 19-20). New York: Howard Books.

Life…as we know it.

I have tried on several occasions to write this post without success. However, just the other day, a dear friend suggested I do just this exact thing. She had no idea when she first suggested it that I had tried and failed several times before to share this information, but at her request, I am attempting this feat yet again.

I don’t know why I’ve been so unsuccessful in the past. Perhaps it felt selfish or self-serving. Perhaps I was afraid it would seem I was asking for pity – which I’m not. What I am asking for is understanding. What I am offering is a clearer picture perhaps than what I’ve given before.

Here’s this friend is understanding. This friend has tried perhaps more than any person outside of my immediate family to understand our situation. We talk often and she asks questions – lots of questions! She has and does try as much as is possible for someone NOT living in our home to understand everything, so when I said something in passing about something I was unable to do without another adult present, this friend was shocked that it had never occurred to her. It was a light bulb moment of “Whoa! I never thought about that.” She then told me that if she, who tries extremely hard to understand, didn’t realize this, then surely most other people really had no clue what our life is really like. Therefore, she thought it necessary that I inform the general public about life….as we know it.

.

.

So here goes.

Most of you know that Hope needs lots of care, but you might not know what that entails. So here, in the best way I know to explain it, is a rundown of the whys, whats and hows of life with Hope.

  • She cannot be left with anyone who is NOT trained in infant CPR with a trach and how to change a trach. Right now, this means my husband or I, a trained nurse, or if necessary, my mother-in-law (who has 39 years experience in Pediatrics, but even she has not had much experience dealing with trachs).
  • She has an oxygen concentrator, a compressor/humidifier, a suction machine, a pulse oximeter, and a feeding pump.
  • She needs trach care at least once a day. It requires 2 people.
  • She has breathing treatments and other meds twice a day.
  • Her clothes and bed linens have to be changed several times a day because she creates so much saliva/secretions.
  • Her feeding pump is turned on and off 12 times in a day and refilled multiple times. The bag is changed daily. Her G-tube is supposed to be rinsed in between every feeding.
  • She sleeps in our room with all of her equipment. Thankfully, at around 6 or 7 months we figured out that the oxygen tube would reach from another room, so we could put it in her room and no longer have our room 15 degrees hotter than the rest of the house. However, we still have her bright glowing Pulse Ox that alarms rather loudly at all hours, her feeding pump that has to be turned on and off at different time, her humidity which is somewhat loud, and her suction machine which is really loud.
  • When we aren’t sleeping, she stays in the dining room – crib and all. We don’t hide her off in a bedroom somewhere. She stays in those 2 places. She can’t be carried around because she’s hooked up to the 3 things mentioned before, plus the suction which must be close by.
  • Want to watch tv or a movie? Get used to reading subtitles because you can’t hear much unless you are on the other side of the room (which I rarely am).
  • I cannot take a shower unless there is another adult in the house because that is enough time for her to plug off and suffocate.
  • I cannot give my kids a bath unless there is another adult in the house because I need to be able to get to Hope if she needs me, yet I can’t leave my other kids in the tub.
  • I don’t feel comfortable doing the dishes unless another adult is in the house. I can’t be elbow deep in dirty dishes when she needs her trach suctioned (which she does frequently).
  • It’s difficult for me to cook at times, for the same reason. I can’t be covered in raw chicken if her trach needs to be suctioned.
  • You might have noticed that I’m online MORE when we don’t have a nurse. That’s because she needs suctioning so frequently, especially in the morning, that’s it’s easiest for me to sit close by. Yet, it’s difficult to hold her without someone else here. Why? Well…
  • That’s brings me to the next problem. My other children. If you have small children you know – the minute you get tied up or busy, the kids will do something crazy, so I can’t just sit and hold her when no one else is here. If I do, the screaming, hitting, biting, wall-coloring, pants wetting, etc. ensues. Sadly, if no one else is here, she spends most of the day in the bed.
  • Along with all of that, she has an hour of in-home therapy 5 days a week, plus a visit from her EI Coordinator every other week. Not to mention, all her appointments.
  • When we travel to said appointments, most of her equipment or a portable version of it goes with us, in addition to her diaper bag, “go” bag (has all emergency items – ambu bag, extra trach, etc.), stroller and carrier.
  • She can’t really go anywhere without 2 adults – 1 to drive and one to ride in back in case she needs to be suctioned. If I have to, I can take her right up the road to the pediatricians, but usually can’t make it without stopping in the neighborhood to suction her.
  • Then there’s the phone calls. Oh, the list of phone calls. Feeding supplies, medical equipment, appointments, Medicaid, medical bills, on and on and on. There is ALWAYS a phone call that needs to be made.
  • And that’s just the stuff I can think of…

Add to all of this that my husband works 50+ hours a week.

When I say, “I don’t have time,” I hope you understand that it’s not just a platitude.

When I say I’m tired…words cannot even express.

When I say I’m forgetful…well, just forgive me, please.

When I am stressed about not having a nurse – I hope you can see why.

But when I say that I don’t want to be pitied, I don’t.

Our life is different. Different than it was. Different than yours. Different. Forever different.

And it’s hard. Oh yes, it is hard.

BUT…

It’s blessed. Very blessed…and it won’t always be this hard.

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Weeping may last through the night, but joy comes with the morning. ~ Psalm 30:5

Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing. ~ James 1:2-4

 

the much awaited, much anticipated, oh-so-wonderful update

The more I put this off…the more I put this off. The longer I take, the more there is that happens which means the more there is to write AND therefore, the more I put it off. You get the idea. Hence, it is time to suck it up, take the time and write “the much awaited, much anticipated, oh-so-wonderful update.”

Hope in a hat

Now, if I can just figure out where to begin.

The last time I updated was in December, and I can’t believe how much has happened and how much Hope has progressed in such a short time. The easiest way to update is to give a rundown of all that she is doing and what has changed.

Can you believe this is the same baby??

Can you believe this is the same baby??

The biggest news came AFTER I first started trying to write this post. I spoke with her neurosurgeon on the phone about the results of an MRI he had done in January. He said that not only is her shunt working fine, but that the scan of her neck showed that she does NOT have the Chiari II malformation! (Read previous post regarding that diagnosis here). If you remember, she almost had a scary decompression surgery back in July to correct it….something she doesn’t have! God is so good!

Hope just had her 9 month check-up (a little late) and weighed in at 16 lbs 2 oz! Her height was 25.5 inches. She is now in the 3rd percentile for both, unless they adjust her age for prematurity. In which case, she is in the 10th percentile for weight! She is getting quite chunky. Adorably chunky! She has now moved totally to a crib because she’s gotten far to big and long for a bassinet – not to mention how much she moves.

We saw the pulmonologist for the first time, and Hope is now taking an inhaled steroid twice a day to improve and heal the lung damage done by repeated aspiration and multiple bouts with pneumonia and bronchitis. Incidentally, she hasn’t had a recurrence of either since starting the steroids. We are also currently weaning her off of oxygen during the day.

The pulmonologist referred us to a cardiologist – the only specialist we hadn’t seen – just to be sure there were not problems there. They did an EKG and an ultrasound, and she got a clean report from them. It’s wonderful to have one specialist we don’t have to revisit.

Hope is doing wonderful in all her therapies. She is reaching, shaking rattles, manipulating toys, and banging blocks. Keep in mind that it takes her more effort and concentration than the average child, but she is doing it. She can now shake her head yes and no – which she find quite amusing to tease us with. Her physical therapist is working on things like kneeling and getting her on all fours. She loves to play, especially with faces and hair.

Working on kneeling

Working on kneeling

Touching my toes!

Touching my toes!

This all fours thing is tough

This all fours thing is tough

The only negative thing about therapy is that her speech therapist had to cease many oral exercises after the last swallow study. She cannot currently do anything that might stimulate her to produce more saliva to aspirate. However, Hope has begun to vocalize sporadically. She squeaks every once in a while to get attention. This is a big deal as it requires her to push air past her airway to make a vocal sound, so she’s learning.

All in all, Hope is doing amazing! If anyone had told me 8 months ago, we’d be where we are now, I don’t know if I would have believed it. She is a constant joy to everyone – so full of smiles and laughs. You can’t help but love her.

While I’m at it. The rest of the family is doing great. The hubs got promoted in November (can’t remember if I shared that) which has been quite tiring, but a financial blessing.

My oldest will be 4 at the end of this month. FOUR! Where did the time go? 3 going on 14 and smart as a whip – with a mouth to go with it! I’m about to start teaching her to read. She’s more than ready. This kid is going to be a world-changer. She could probably school some adults on the Bible. Smart, sassy and sensitive. That’s my Grace.

DSC08803

Proud big sister

It has also become more and more evident in the last months that my middle child (oh, poor middle child) is a true strong-willed child. Time to read up on some Dr. Dobson again. I don’t know what to do with her. She’s 2, but has no idea she’s not 4 or 5 – as commented on by a random mom at Monkey Joe’s. No ma’am. She has no idea she’s not 5. She’s fearless…which is why it makes it so darn hard to put the fear of God in her. Lol. Oh well, I know one day I’ll be glad she’s so strong-willed. Just when it’s against others and not me. I’ll tell you one thing about her though, she’s a hoot. I said it when she was a baby and couldn’t stop smiling, and I was right. She is going to be She is the clown. Joy is such a joy. Strong-willed, but a joy.

No clue she isn't grown

No clue she isn’t grown

We recently took Joy’s paci away. Don’t judge me. She only still had it when sleeping, and I’ve been a little slack on starting and stopping things with her during this season of our lives. I’ll admit that sometimes I do whatever makes my life easiest, so long as it’s not truly detrimental in the long run. I’ve only just started trying to potty train her, but even that I can’t seem to do full-on. After spending 2 years trying to get it to work with Grace, I just don’t have the drive to try so hard this time, and really, who can blame me for not having the time or sanity to let her run around half-naked and sit in the bathroom with her every 30 minutes? She’ll get it. After everything I tried with her sister, it just had to click for her. I’m hoping it will click for Joy.

As for myself, I have committed to be a contributing writer for a well-established homeschool blog that is becoming a group blog. I’m really excited about this opportunity to work with a great group of writers, learn more about blogging, possibly learning how to improve my own blog, and maybe even supplement our income a bit. I will definitely direct you over there once the revamped blog is launched. It should be in the beginning of April. I have already written my first draft for my first post, and you can be sure I’ll be linking up my posts here. Look for more info to follow.

Before I wrap it up, I have to say, it’s been quite a lovely weekend. My husband was off of work per doctor’s orders because he has the flu and bronchitis. However, he didn’t feel as awful as it sounds. It was, however, his first days off in 3 weeks. These last 2 days have felt more “normal” than any day in quite a long time. We had no nursing help and no therapies (since it’s the weekend). It was just us. Just the 5 of us. We watched movies, at pizza, popcorn and chicken wings, laid around in our jammies, read books. Even with me doing everything AND taking care of Hope’s needs, it felt the closest to “normal” life as I can remember in a very long time. It was nice.

Whew. Update done. That wasn’t as hard as I thought. I mean, it’s 12:30 am, but it wasn’t so hard. Why did I put it off for so long? Sorry if it seems somewhat haphazard and disjointed. It’s late, I’m tired, and people are asking for an update.

Wonder how long it will take to write the next one?

Post-op

Hope had G-tube placement surgery yesterday and is doing fine. This means her feeding tube is now directly into her stomach through her side rather than through her nose.

Hope after her surgery.

Hope after her surgery.

Now we can see her pretty little face. The whole thing! No tape and tubes on it.  Apparently, it will also be easier to use and easier to change.

Please continue praying for her recovery. She could come home as early as today, but it’s possible she will be there until tomorrow or later. It depends on how she handles her feedings once they start them back.

Oh, and as you can see, she is over 12 lbs now! Chunky little thing.

Thank you all for your prayers and support!

The Big Day

Today was the day we have been waiting for. After rescheduling and waiting and waiting. Hope finally had her swallow study.

Unfortunately, the study didn’t turn out as we had hoped. I’m trying to look at it positively. We haven’t gone backward. We actually have some more answers to her swallowing and breathing problems even if we didn’t see the progress I wanted to see.

I will endeavor to explain what we found out with non-medical terminology. From what I can decipher from the doctor’s handwriting and Google, it’s called oropharyngeal dysphagia. Basically, that just means she has a swallowing problem – which we already knew.

We were aware from her first swallow study back in May or June that she aspirates when she swallows – meaning that when she swallows, some food goes down her airway instead of her esophagus. What we have now learned is that in addition to that, much of what she swallows is also backing up into her nasal cavity. Almost nothing goes down her esophagus.

This explains her difficulty handling her own secretions and why we have to suction her so frequently.

She can have absolutely NOTHING by mouth. Not that she has been allowed to anyway, but even some of the things the Speech Therapist has used will have to be stopped for now. Aspiration puts her at high risk for pneumonia. We also don’t want to stress or damage the parts that are working properly.

We have a consult tomorrow with Pediatric Surgery to schedule a G-Tube placement. That basically means they will put a hole in the side of her stomach to insert her feeding tube rather than continuing to go down her nose. Continuing to put tubes down her nose and esophagus can potentially exacerbate the problem.

We will also be compressing her feeds – meaning she won’t be on a continuous feed anymore. Thankfully, that means one less thing she will be attached to all the time. She will only be hooked up to the feeding pump during feedings. As she gets bigger and we compress them more, it will free her up a little more…especially once she is fully weaned off of oxygen.

We do greatly appreciate the prayers that went up and continue to go up. I know I was praying through most of the test, but as I told our nurse when we left, God had other plans. I trust Him and look for the blessings in all of this.

Hope also underwent an ultrasound this past Tuesday for her hips. That was a great report! Her hips are NOT displaced as suspected, nor does she need any tendons snipped. The only thing found was that one leg is less developed than the other, but that has been apparent from day one just by looking at them. The orthopedist was quite pleased with those results. As for the prognosis, we will just have to let her grow and develop to find out just what her little legs can do. At her age, it is difficult to measure her ability since she cannot respond to commands yet. Right now, I’m believing she will walk one day. Of course, as our enthusiastic Physical Therapist will tell you, she WILL walk. We won’t accept can’t!

The praise in today’s outcome is that I am not crushed. Yes, I was looking forward to having a big cheering party in the radiology department if she had passed, but that’s okay. If I have learned anything in the last year, it’s not to get discouraged. God is still God. This is just a season, but even if nothing ever changed, I’d still be happy and blessed with this little girl.

Our other 2 princesses are joyfully spending a couple days with their grandparents, and I got to spend lots of time with Hope today…so I call it a good day.

I don’t get to talk about my other two blessings much, so I just wanted to share what my oldest said yesterday. “Mommy, when I grow up, and Joy and Hope…we can go walk in the forest (behind our house) and see deer….and I’ll hold Hope’s hand in case she gets scared.”

I can’t help but brag on this 3 year old, tender, sweetheart of a girl. Grace knows just how to melt my heart. I cannot begin to tell the joy it gives me to see the love the 2 oldest have for each other and for their little sister. I can’t wait to see the relationship that develops between these 3 special sisters. It will be a beautiful thing to watch.

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There is surely a future hope for you, and your hope will not be cut off. ~ Proverbs 23:18

As you know, we consider blessed those who have persevered. You have heard of Job’s perseverance and have seen what the Lord finally brought about.
The Lord is full of compassion and mercy. ~ James 5:11

Find rest, O my soul, in God alone; my hope comes from him. He alone is my rock and my salvation; he is my fortress, I will not be shaken. My salvation and my honor depend on God; he is my mighty rock, my refuge. Trust in him at all times, O people; pour out your hearts to him, for God is our refuge. ~ Psalm 62:5-8