Tuesday, January 14, 2014

Same S#!*, Different Day


Welcome to the January 2014 Carnival of Natural Parenting:
The More Things Stay the Same

This post was written for inclusion in the monthly Carnival of Natural Parenting hosted by Hobo Mama and Code Name: Mama. This month our participants have talked about the continuity and constancy in their lives. Please read to the end to find a list of links to the other carnival participants.



I've been seeking out some change... some change in my son. He has some serious sleep problems. He usually sleeps in 45 minute increments. He had sleep problems before, they turned out to be thyroid-related. Within a month of this new sleep problem, I went to our Pediatrician for help. Much like he had advised when Sasha was waking every hour to nurse, he told me to night wean Spencer. Well Spencer still wasn't eating great and as long as he was still nursing plenty, I had room to not worry over it. Spencer has always nursed best in a sleepy state, during the night. Night weaning? No, that was not our answer.

sleeping in converted Pack 'n Play
He rolls and flips around in his sleep. A lot.

Long Version

Skip to short version.
We went to our Ear, Nose & Throat doctor. He diagnosed that Spencer was recovering from an upper respiratory infection. We had no idea! We scheduled a follow up in 2 months. He said if the sleep problem got better, then worse or if it just didn't improve to call sooner. After 2 weeks, I knew nothing was changing. It took 2 more weeks to get back in to see the ENT.

Saw the ENT and found one of Spencer's ear tubes (placed in November 2012) had come loose. Time for replacements. Spencer had his second Myringotomy (new tubes) in October 2013. When asked, the ENT did say that this might help him sleep better. "Might?" Great. More hoping...

Alas, no change. Still. Last time Spencer had sleep issues they were much worse. (He would sleep 10-30 minutes maximum at any given time, 24 hours a day.) I called and left a message with our Endocrinologist's (thyroid doctor) nurse, asking if I could try doubling the medicine they prescribed to treat Spencer's hyperthyroid symptoms. When they called me back, they wanted to see Spencer the next day! (This is surprising because it takes a while to get an appointment there.) We saw the Endocrinologist who checked him over and sent Spencer for some blood work.

Doubling the dose didn't change anything and after a couple of months, I dropped Spencer back down to a half dose. Spencer's blood work came back... presumed iron deficiency. He conferred with his best friend, a Pediatric Hematologist. They offered instructions to give Spencer a double daily dose of iron (split into morning and evening) for a week, then drop to a single dose. Test again in 2 weeks. I had actually mentioned the possibility of iron deficiency to the Endocrinologist in relation to Spencer's obsession with eating hair. He was fascinated when I reminded him of this. He also suggested (hello? my idea!) doubling of Spencer's medication dose (he was only taking a half dose in the first place).

After the second blood tests, we got confirmation of actual Anemia, but his numbers were improving. This time the lab sent a copy to our Pediatrician (I'd requested this for both tests). He called me and said he was sending over an iron scrip to our pharmacy. Um... duh? Thanks, we'll get it and try it anyway. Hope its better than what we're using. (It wasn't and we've since switched to a 3rd iron supplement product.)

Meanwhile I had my first ever anxiety attack and we tried other things without doctors' help.

We returned for our scheduled follow up with the ENT. I mentioned Spencer actually gasping in his sleep on a couple of occasions, in addition to snoring. He finally sent us to see the Audiologist (the next step toward a sleep study). We couldn't get in to see the Pulmonologist until the last day of the year.

The Pulmonologist basically suggested night weaning, but in nicer terms. He talked about sleep patterns and Spencer learning to self soothe (and eventually not waking up every cycle). He also prescribed a steroid nasal spray to use each evening, but said if it didn't work within 2 weeks to give it up. I was beginning to worry that we would still not get or sleep study. He did, however, put in the request. They are quite backlogged in that department, though. We're still waiting for the sleep study. I have also ordered some other nasal spray that comes highly recommended. We'll have a follow up with the Pulmonologist after 6 weeks.

Not Sleeping
Pretty playful, considering he'd been up since 5am.
He soon fell asleep... just in time to leave for an appointment.

Short Version

We have gone through scheduling, waiting and eventually seeing our Pediatrician, Ear Nose & Throat Doctor, Endocrinologist, ENT again and now a Pulmonologist. We've also had our Well Child Check again.

I keep digging in the medical system, researching, asking other parents of children with Down syndrome, children with other special needs and even typical children. I continue to fish for new answers, trying to find our answer. It has begun to feel like a never-ending quest. Its has turned into Same #!*, Different Day as I go day-to-day often just trying to survive the day. This is one area in which I am way beyond being ready for a change!

Go back for Long Version

What constants do you have in your life? Hopefully something happier than mine!



Carnival of Natural Parenting -- Hobo Mama and Code Name: MamaVisit Hobo Mama and Code Name: Mama to find out how you can participate in the next Carnival of Natural Parenting!

Please take time to read the submissions by the other carnival participants:

  • Always an Artist — Some kids take longer than others to come into themselves, so you have to stick with them, as a parent, long after everyone else has given up, writes Douglas at Friendly Encounters.
  • Not Losing Yourself as a First Time Mom — Katie at All Natural Katie continues to stay true to herself after becoming a new mom.
  • Using Continuity to Help Change {Carnival of Natural Parenting} — Meegs from A New Day talks about how she is using continuity in certain areas of her life to help promote change and growth in others.
  • Staying the Same : Security — Life changes all the time with growing children but Mother Goutte realised that there are other ways to 'stay the same' and feel secure, maybe a bit too much so!
  • Harmony is What I'm AfterTribal Mama gushes about how constant change is really staying the same and staying the same brings powerful change.
  • A Primal Need For Order and Predictability – And How I Let That Go — Jennifer at Hybrid Rasta Mama shares how she overcame her primal need for order and predictability once her awareness shifted, opening her eyes to the impact this had on her young daughter. Take a short journey with Jennifer and she bares her soul, exposes her weaknesses and celebrates her new outlook and approach to living life, even in the face of total chaos.
  • Breastfeeding Before and After — Breastfeeding has come and gone, but Issa Waters at LoveLiveGrow finds that her relationship with her son is still just the same and just as good.
  • A Real Job — Back in high school That Mama Gretchen had a simple, but worthwhile career aspiration and today she is living her dream … is it what you think?
  • Comfortingsustainablemum never thought she would want things always being the same, but she explains why it is exactly what her family wants and needs.
  • 'The Other Mums' and The Great IllusionMarija Smits reflects on the 'great big magic show of life' and wonders if it will continue to remain a constant in our lives.
  • Unschooling: Learning doesn't change when a child turns four — Charlotte at Winegums & Watermelons talks about the pressure of home education when everyone else's children are starting school.
  • Finding Priorities in Changing Environments — Moving from Maine to a rural Alaskan island for her husband's military service, Amy at Me, Mothering, and Making it All Work found that keeping consistent with her priorities in changing environments can take some work, but is vital to continuous health and happiness.
  • The Evolution Of Our Homeschool Journey — Angela at Earth Mama's World reflects on her homeschooling journey. Homeschooling is a constant in the life of her family but the way in which they learn has been an evolution.
  • Sneaking in Snuggles: Using Nurturing Touch with Older Children — When Dionna at Code Name: Mama's son was a toddler and preschooler, he was the most loving, affectionate kiddo ever. But during the course of his 5th year, he drastically reduced how often he showed affection. Dionna shares how she is mindfully nurturing moments of affection with her son.
  • Steady State — Zoie at TouchstoneZ writes a letter to her partner about his constancy through the rough sailing of parenting.
  • A Love You Can Depend On — Over at True Confessions of a Real Mommy, Jennifer has a sweet little poem reminding us where unconditional love really lies, so it can remain a constant for us and our children.
  • Same S#!*, Different Day — Struggling against the medical current can certainly get exhausting, especially as the hunt for answers drags on like it has for Jorje of Momma Jorje.
  • New Year, Still Me — Mommy Bee at Little Green Giraffe writes about how a year of change helped her rediscover something inside herself that had been the same all along.
  • One Little Word for 2014 — Christy at Eco Journey In The Burbs has decided to focus on making things this year, which is what she is loves, as long as she doesn't kill herself in the process.
  • The Beauty of Using Montessori Principles of Freedom and Consistency — Deb Chitwood at Living Montessori Now shares the continuity of her teaching, parenting, and grandparenting philosophy using a combination of freedom and consistency.
  • My Husband's MiniCrunchy Con Mom shares which of her sons looks more like her husband's baby pictures — and the answer might surprise you!
  • Growth Happens When You Aren't Looking — Lori at TEACH through Love is treasuring these fleeting moments of her daughter's early adolescence by embracing the NOW.
  • A New Reality Now - Poem — As Luschka from Diary of a First Child struggles to come to terms with the loss of her mother, she shares a simple poem, at a loss for more words to say.
  • Making a family bedroom — Lauren at Hobo Mama has decided to be intentional about her family's default cosleeping arrangements and find a way to keep everyone comfortable.
  • New Year, Same Constants — Ana at Panda & Ananaso takes a look at some of the things that will stay the same this year as a myriad of other changes come.
  • I Support You: Breastfeeding and Society — Despite how many strides we've taken to promote "breast is best," Amy at Natural Parents Network talks about how far we still have to go to normalize breastfeeding in our society.
  • Keeping it "Normal" — Kellie at Our Mindful Life has moved several times in the last two years, while doing her best to keep things stable for her kids.

8 comments:

  1. Jorje, I hope you both get some answers & some SLEEP soon!! What a trial to go through all that hope but with no real solution yet. I trust one is out there and I know you're persevering enough to find it!

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  2. I hope, my friend, that you are remembering to take care of YOU during all of this. You have been the most incredible rock for your family! You're in my thoughts.

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  3. I hope this latest round of testing helps get to the bottom if this and get you and Soencer some sleep! Amazing how much there still is to learn about what effect that extra chromosome can have on our little guys!

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  4. I really hope you find some answers soon, Jorje. That would definitely be an exhausting and frustrating experience.

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  5. Oh, sleep problems. I really feel for you and what you are going through with the health system. We had horrible sleep issues with my oldest and consulted a sleep specialist, and we battled the health system with my youngest.

    I hope that the sh*& changes for you and that you begin to find some answers. And in the meantime, I hope you are able to get some sleep!

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  6. Oh Jorje. What a hard time you've been through. Let me tell you a semi-secret though: my pre-child friends barely recognise me these days because, had there been a vote, I'd have been voted 'least likely to have/want anything to do with children'. And yet here I am, like THIS. And you know, Spencer is about the only child other than my own that brings a smile to my face every.single.time. I see a picture of him. He is the embodiment of a mother's love, courage and self-sacrifice. He reminds me just what lengths love will go to. I know that doesn't help you while you're desperately tired, but just o you know, I admire and respect you o much. You are an awesome mama. xx

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  7. You are your son's best advocate. It's sad but true that patients (or their parents) have to keep pushing, keep coming back, and when they find the answer... you can sleep better (literally) because you did everything you could for your child.

    When I was a kid, I had migraines all the time. My mom took me from doctor to doctor because I was so unable to function - I started homeschool because I couldn't make it through the school day. One day, a doctor told my mother that he believe (in his "professional opinion") that I was making it up! He made it clear, he thought I was lying and my mom was just a hypocondriac. Thankfully my mom believed in herself and her child. In the end, it was the very medication that they put me on, but we had to figure that out ourselves.
    Anyways, my point was that so many (too many) people deal with those struggles.
    Keep digging is right; no body knows your child like you do!

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  8. It is so great that you are sharing this information on the blog. It will help someone!

    Good luck to you. Persistence is the key to finding the answers that you need.

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