Are You Thinking About Cancelling Cable? We Did and Here’s What We Found Out.

I don’t think of us as the “cancelling your cable” types.  We are just used to the convenience of tv anytime we wanted to watch and options that everyone in the family enjoyed.

We were paying a ridiculous amount for our cable and high-speed internet.  A ridiculous amount.  For a couple of years we contemplated cancelling, but just couldn’t quite make ourselves do it.  It all seemed so confusing to evaluate the other options of how to watch tv without cable.  We didn’t have any extra movie channels, and yet we were paying $214.00.

We were paying $139.99 for “bundled services” for cable/tv, voice (home phone) and high-speed internet.   We didn’t even  plug in a phone but they offered a better price for bundled services.  So, technically we were paying for a service we didn’t even use.  In addition we were paying $41.88 for “additional equipment and fees”.  Then still some additional “fees” that totaled $21.40.  

Below is the “additional” equipment and fees we were paying, totaling $41.88.

  • $10 A DVR I loved my DVR and rarely ever watched live tv.  This allowed me to watch my favorite shows when it was convenient for me and not when they aired.
  • $9.95 digital converter box for our bedroom. The tv was 25 years old and original remote didn’t work, so this was a more expensive box than the other adapters.
  • $11.98 for 2 additional digital adapters boxes @ $5.99 each. One of the two was rarely being used.
  • HD fee of $10. Say what?! That was ON TOP of the 139.99 we paid for “bundled services”
  • $10 fee for the modem….we still have to pay this, unless we later opt to buy our own.

For such a long time, a lack of understanding the other options kept us in limbo.  We just couldn’t figure out how it would all work.  Jay especially wanted local channels, the ability to watch the Alabama games on tv and likes to be able to watch Fox News.

Our married daughter Jordan, and her husband Josh were surviving without cable.  Josh was able to help us understand some of the options. They opted to have Sling TV, Hulu and Netflix.  They were able to tell us we for sure would be able to watch Bama games on Sling TV and that with Hulu, most of the current popular shows are available the next day after they air.  Sling TV  has Fox News in some areas but not in ours, just CNN.

Even though we didn’t fully understand all the options, we did it.  We bit the bullet and cancelled cable.   Jay enjoys tv more than I do, so I knew it would affect him the most.  Jessie had been gifted a 3 month subscription to WWE that I knew she would still be able to watch, and that’s her favorite thing to watch besides YouTube, so I knew for now she would be ok.

I was surprised that when I hung up the phone with Comcast (our cable company) I felt a little sick to my stomach.  It seems ridiculous to say now, but it felt like this big scary leap that I was afraid we would regret.

We kept the high-speed internet offered by Comcast, but cancelled the cable and phone. We knew that whatever options we chose we would want the high speed internet in order to be able to stream tv and use wi-fi for other purposes on multiple devices at the same time.

The same day I cancelled cable I subscribed to Hulu.  Most of the current shows we watch are available on Hulu the day after they air.  We were leaning toward going with Sling TV to be able to watch Alabama football, but since it was off-season we decided to wait on that. We already had Netflix and Amazon Prime.  We didn’t remember to use Amazon a lot for tv, that isn’t our primary reason for having it but without cable it added options.

For the next few 3 weeks we streamed tv using the apps for Hulu, Netflix or Amazon only on our phones or the Kindle, which had a little bit larger screen.  I was surprised to see Jay did great the first 2 weeks.  By the 3rd week he was finding the small screen uncomfortable to find a way to watch.

Jay really missed “live” tv that just stayed on and went to the next thing.  He likes to just leave the tv on in the background all the time, and I really can’t take that hour after hour, which is why he watches in the bedroom a lot.  He likes background noise, its ok sometimes, but I really like quiet.

Jessie before bed the other night asked if I “wanted peace and quiet” in the morning.  That was her way of asking if she was going to be able to watch tv in the living room or would have to watch in our bedroom when she woke up 🙂

***This post contains affiliate links, see full disclosure here ***

On the 3rd week when Jay was really starting to get antsy Hulu Live came out.  For us, this seemed pretty much the perfect solution.  We subscribed to it for $39.99 a month.  It has “live” tv, built-in dvr, the sports channels for Bama games and Fox News.  His perfect match.  We still needed to figure out how to make our ancient tv in the bedroom work with it.  Because Hulu Live is brand new, not all the devices that work for other options work yet with it.

Jay ordered a Roku Express from Amazon because he read that works with Hulu.  It does work with Hulu, but not the Hulu Live. We returned the Roku device.

Unbeknownst to Jay, Evan was feeling sorry that his dad couldn’t watch tv comfortably. Evan knew daddy wouldn’t buy himself a new tv and he wanted Jay to have one.  On Sunday afternoon of Memorial Day weekend I went with him to Best Buy where he bought his dad a smart tv.

The super sweet thing about this purchase is that  Evan has been working out of town for a couple of months and sleeping on a futon. He is so tight with his money that he won’t buy himself a bed.  But he bought a tv for his dad.

When we drove up Jay was working on the van with his head under the hood.  Evan quickly went to the front door with the tv while I distracted Jay.  In a minute Evan told Dad he needed help with something and went back to the front door where he was holding Dad’s surprise when he came around the corner.  Evan had bought an open box model so how he rode home with it in his lap was entertaining 🙂

 

Waiting for Dad to come around the corner. Of course our porch is messy and dirty for the pic. #reallife

Evan had one Chromecast (streaming device) and we bought another.  Chromecast, like most of the other options, plugs into the HDMI input in back of the tv.  Jessie thinks it’s so cool now that she can use the Hulu or YouTube app on her phone and “cast” it to the tv to watch on the big screen.  We really like watching this way.  Jay finds it slightly less convenient but it doesn’t bother me or Jessie at all.  The only time I think about it is if I  get a phone call.  Then, I’m trying to pause the tv so it will be quiet while I answer the phone.   My solution is use the tv remote to mute the tv until I can pause it after answering.

Although in the end although we chose Hulu Live and using Chromecast to stream it, I will share here for you the choices we considered to help you evaluate your options.

Here is my understanding of the tv options we checked out, including Sling, which we ended up not choosing once Hulu LIVE was available.  There are other options we didn’t really explore.  

Streaming Device Options

On any of the streaming options you have to use a device that enables you to stream them on your tv using your wi-fi.  Roku, Amazon Fire TV Stick, and Chromecast seem to be the most popular.  You can go here to see a comparison of all the Roku options.  You can go here for a review/comparison of some of the different streaming device options.

Xbox One works for Sling, Hulu, Netflix and also works for Hulu LIVE, which doesn’t have as many streaming options yet.  Hulu says there will soon be more options for streaming Live.  We went with Chromecast since we chose Hulu Live.  We probably would have gone with one of the options that comes with a remote otherwise.

Evan has an Xbox One, so when he is home on weekends he can use that option in his room but unless you already want one for playing games, it is the most expensive of the options.  All of the other options are less than $100 and some significantly less.

TV Streaming Options

Sling Tv:  they offer a couple of different options and you can try it for 7 days free.  If you pay for 2 months Sling TV you can get a Roku Express device (enables you to stream on your TV) for free.  The Roku Express is currently sold on Amazon for $29.99.  This was what we originally planned to do.  The main thing about Sling was (before Hulu Live) the only option we knew of that was going to get Jay Alabama football and other sports, but Bama football was at the top of the list.  If you don’t care about everything Hulu Live has to offer, but want your sports, Sling is a less expensive option.

  • Sling Orange is $20 and includes 30 channels and streaming on ONE device.  Channels included HGTV, Disney, CNN (no Fox news), ESPN and more.
  • Sling Blue $25 includes  40 + channels Fox (not Fox News in our area but for some areas is offered), NBC, regional Sports, NFL Network and more.  Stream on up to THREE devices
  • IF you subscribe to orange AND blue you can save $5 and stream on up to FOUR devices at the same time.

Hulu- (not Hulu Live) “Watch premium original series, full seasons of hit shows, current episodes, movies and more.”  Like Netflix, they have some original series’.  On Hulu the current most popular shows from a variety of networks are available to view on Hulu the day after they air on live tv.  I mostly dvr’d everything so that didn’t matter to me at all.  When we were considering this option I looked for specific shows and pretty much everything I watch was available on Hulu.  When Jessie’s subscription to WWE runs out, they even have her Monday Night Raw.

  • Hulu you get 30 day free trial then $7.99 per month. One device at a time.
  • Hulu Live Live 7 days free then $39.99 per month . This is the option we chose. For sports enthusiasts they have the sports channels and they have both CNN and Fox News.   You can stream on two devices at the same time for this price.  Comes with 50 hours of cloud DVR. You can pay more to stream on additional devices or add more space on your dvr.  You can click here to see all the channels they offer.

We haven’t received one normal full monthly bill yet for just our Comcast internet, so this could be off by a couple of dollars.  But this is now our current cost of high-speed internet and tv.

$91.76 (79.95. +10.00 modem +tax) high-speed internet
+$39.99 Hulu Live
total $131.75 for a savings of $82.25

I hope our wild ride into ditching cable and finding a less expensive option is helpful to you.  It was confusing to figure out, but we’re so happy now that we’re saving $82 and don’t feel like we’re missing out on anything.  I regret we waited so long.  If you choose any of the streaming devices through Amazon, I would appreciate you using my link.  I will receive a small ad fee at no additional cost to you and I would be grateful.

I wish you the best of luck finding the best value for your family.

Till next week,

Josette

 

 

 

How Our Family Navigated Through the Teenage Dating Years

In a recent post I wrote about using the tween years to prepare for the teen years, I explained that waiting to date until an age that is older than what most consider “normal”,  was what we decided was best for our family.  I explain in the original post how that line of thinking came about. After that post I was asked to give more detail about how that looked in our family.

I was asked:

1)  What conclusions I drew from reading the resources I listed

2) What boundaries we had set that were firm

3) What we allowed with guidance

I listed some reasons we thought waiting to date until older in the first post.  If you haven’t read that post you will want to as I won’t repeat it all here and all the resources that influenced our decisions are listed there.

After reading quite a few books, here are some of the conclusions we came to that influenced our dating guidelines.

In addition to the other reasons already stated, we felt like dating is best used strictly for the purpose of finding a spouse, not for having fun.  Our teens had active social lives, but not one on one dates. They did attend prom at our homeschool group with dates, but dating one on one wasn’t the norm.

We encouraged outings in groups and mostly avoiding being alone with the opposite sex for an extended period of time.  There wasn’t a strict rule of never being alone, but they mostly stayed in a group.  It didn’t have to be a large group, this wasn’t a strict thing…the purpose was avoiding romantic relationships, avoiding awkward situations, avoiding unnecessary heartbreak.  Not having to deal with those issues gave them more time and energy for focusing on what we felt more important for this time in their life, their relationship with God, family, good friends, and of course, school 🙂

 We began planting seeds in the tween and early teen years for them to begin making a mental list of exactly what they were looking for in a marriage partner.  Some things on the list are essential: being a Christian, wanting similar things in family life, some basic compatibility issues.  Then listing other things that are nice to have but not absolutely essential.

At 16, you aren’t ready to get married, so if you develop feelings for someone you will likely have a loooong time to date before you are ready to be married.  That just makes it harder to remain physically pure in your relationship until marriage.  If our teens had developed serious feelings for someone, we would have tried to prolong group settings as long as possible until they were closer to an age to really consider getting married.  Unlike many other parents though, I didn’t feel strongly that our kids had to complete college before marriage, but they needed to be able to support themselves financially.

We didn’t set an exact age, but we hoped we could avoid our teens dating until near the end of high school or beginning of college.  

We advised our teens to never go on a date with someone who wasn’t the kind of person you wanted to marry. This doesn’t mean you know IF you want to marry them, just that from what you know about them, you haven’t ruled it out.  At whatever point you know they aren’t a serious candidate, end the dating relationship.  That might be one date, a few or 6 months, but at whatever point you know the two of you aren’t a good match for marriage, STOP dating them.  

Even once they begin to date we thought it was best if they didn’t spend all or almost all of their time alone as a couple. This would be more likely to form emotional attachments more quickly and bring greater temptations.  Once Jordan was dating (she was 18), she did go on “alone” dates and spent time getting to know her dates on her own, but they also spent a LOT of time with our family.  She and Josh (her husband now) also spent time with his family.  She, and we, felt there were advantages to both, making it easier to have serious conversations you’re less likely to have with others around and spending time with both families.

Boundaries We Set That Were Firm

This category will be small.  There weren’t a lot of boundaries that were firm. We were so fortunate that our kids came to see the wisdom of the ways that we advised them.

We wouldn’t have let them date before 16 if they had wanted to.  IF they had dated at that age everything I’m going to tell you about what dating looked like would have been different.

Jordan was 18 and an adult when she dated.  She could have been living away from home at that age.  We took all that into consideration.

We didn’t have a set curfew that was inflexible.  We always knew where our teens were, dating or not. They kept in touch by texting.  (Evan hasn’t dated while he has lived at home.)  Sometimes they were out very late.  I always knew who they were with and what they were doing.

Jay had to work and I was at home so I waited up or dozed on the couch.  I was as exhausted when my kids were teens as I was when they were babies.  If they had broken our trust…..this scenario all would have changed.  They didn’t.  

I will probably open myself up to some criticism here, but Jordan and Josh would fall asleep on the couch early watching a movie and sometimes we would go to bed and leave them there. When they woke up they would talk or watch tv until the wee hours.  Our bedroom door opens to the living room.  At any moment we could (and did) come out of our room directly into the living room.  They were adults.   They got up early for work during the week and couldn’t stay awake when the movie would start.  If we had enforced that he had to go home they would have had little time together.

They didn’t ever stay at either of our homes alone (a few minutes here and there when everyone was coming and going) and that was by their choice as well as well as our recommendation.

The key ingredient here is that Jordan was a believer and she wanted her actions in all areas of life to be pleasing to God.  That’s really what we’re always hoping for as parents isn’t it?  Knowing this, and knowing her personal convictions for purity, in all areas not just physical, enabled us to be more flexible than we might have otherwise been.

It was always our prayer that our kids would one day transfer their respect for our authority over them to God, who is an authority over us as parents too.   I told my kids many times throughout their life that although we had authority over them, that there was a higher authority than their parents.  I always reminded them that I would answer to God for how I parented them and that I took that very seriously.  Over time they came to really respect that.  I feel sure they’ll use that one day with their kids when they have to say no 🙂

What We Allowed With Guidance

When any kid leaves for a date, they COULD tell you anything and in most cases you wouldn’t know if they weren’t truthful.

Because Jordan set standards for herself that we could respect, what we offered Jordan mostly was recommendations.  If she had behaved in a way that went against our conscience as parents answering to God, we would have had to do things differently.

Although she knew we were right, I’m sure Jordan sometimes got tired of being reminded of certain things.  Like being cautious about being alone in situations that were likely to be a great temptation that could cause regret.  She continued to hear it anyway, cause that’s what parents do.  

What dating looked like in our family didn’t look like it does for most of the world, neither did it look exactly like the excellent books I read and recommended in my first post.  I read those books and we prayed for God to guide us.

I hope as you’re thinking and praying over what dating should look like in your home, you won’t be too quick to think it should look exactly like anyone else’s experience.  You’re working with YOUR child’s temperament, with YOUR child’s spiritual maturity and each child truly does require something so different from us as parents.  My 3 kids are night and day different in many respects.

I’m confident that God can and will guide you to the right decisions for YOUR family.  I’m praying that will be so.

Wishing you the best as you navigate your way through dating.   I hope you have less gray hair at the end of it than I do 🙂

Till next week,

Josette

 

You Can Garden on a Teeny Tiny Budget

I truly believe that planting something and watching it grow has significant mental health benefits.  I googled it to see and many experts agree that gardening is just plain good for you, physically, mentally and emotionally.  I know that sitting outside in my favorite spot for just a few minutes can turn my attitude around when my day isn’t going in a good way.

Some folks have told me they don’t garden because they think they can’t.  While it may come more easily to some than others, everything you need to know can be learned.  It isn’t true that you have to have a “green thumb”, have a lot of time, or spend a lot of money to reap the benefits of some growing something beautiful.  I’m living proof.

My first ever plant purchases were from a yard sale.  An older couple who had a sunroom filled with plants had rooted some new plants from theirs and were selling them.  They had a sunroom full.

They spent probably an hour schooling me on what plant food to buy, how often to water and how to start new plants from existing ones.  All because I stopped at one garage sale.  And all because they were excited and willing to share their knowledge with me.

In those days I lived in an apartment and I quickly developed a passion for indoor house plants.  Now, I mostly have outdoor plants with bright colored blooms.

What your particular stressors are may be different from mine, but we all have them.  A house full of kids, a child with special needs, a full time job, whatever it is that leaves you feeling sapped of all your mental energy,  a little natural beauty that YOU nurture can bring a sense of peace and joy as you watch it grow.

When my oldest two kids were young and they were less than 2 years apart,  I had very little money or time to spend on gardening, but I always wanted to have a little something growing. Just a little something.  A little bit of cheerful on the porch by the front door or on the kitchen table.  That’s all I could manage at the time.

As my kids have gotten older being able to garden a little as a hobby has been something I have tremendously enjoyed.  I still have a teeny tiny gardening budget.  I never spend more than just a few dollars at a time.

My grown up kids don’t need me so much anymore. When they were younger I was nurturing them and watching them grow.  Now I nurture these beauties and watch them grow. Whether you have 20 plants or 1, you can gain the same benefit.

I purchased this Knockout Rose (on the left) last night at Lowe’s for just $3.00! The original price tag was missing, but I would guess it was originally priced about 4 times that.   The plant on the right $1.00 (originally priced at $4.68).  I have another of these in a different color (the featured photo at top of post) and have watched it quadruple in size. It has such gorgeous color and delicate looking but hardy blooms. It has been low maintenance so I was happy to find another on sale.  Can’t wait to get these babies planted.

I LOVE the clearance section in the garden center at Lowe’s.  There’s almost nothing I would rather do with a few minutes and a few dollars. More than half, if not most, of my plants have been purchased at discounted prices.
If you’re new to gardening start with just one or two plants.  Unlike when I first started, you have the benefit of Google to learn everything you could possibly want to know about how to care for your plant.  Start small and gain confidence.

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I’ve loved hydrangeas for many years now, but they’re a little more complicated than what I currently have growing. I got this beauty for $5., marked down from $12.98, so I decided to take the risk!

I am no expert! I have been growing things for about 30 years now.  There is much still for me to learn. I still love to find someone (like at the garage sale that started this plant love affair) who knows things about gardening that I don’t and learn from them.

Tips For Gardening on a Teeny Tiny Budget:

  • If planting outside check different times of day to see how much sun each part of your yard gets.  Write it down or draw it out if that helps you remember and plan. Being sure you plan for the right sun exposure helps you not lose $ on plants that don’t survive.
  • Start with just one or two plants.  Learn about those, grow in confidence and buy 1 or 2 more.
  • Sometimes, the same plant varieties are available in different sizes.  Buy the smaller ones.  The plant marker in the container will tell you what size the plant will be when mature.  If you’re willing to be patient, you can achieve the same look for much less.
  • Once you get started, always save your pots as you re-pot plants.  You will always use them later!
  • If you’re spacing out your expenses, it helps if you buy a little bit of supplies like potting soil or a tool you need all along and not when spring hits and you want to buy the pretty new plants they just put out for sale.
  • Consider planting where YOU will get the greatest enjoyment from your plants, not necessarily where they will be seen by others the most.  I keep something by the front door, but the rest of my plants are all in the backyard near the pool and where I like to escape when I need a mental health moment.  I need mental health moments every day 🙂
  • Friends and even acquaintances that garden love to share when their plants spread out too much and need to be thinned or new plants sprout up from the originals.  I LOVE getting new plants this way, not only because they’re free, but I always continue to remember who I got them from as I enjoy them.
  • You get the most bang for your buck by purchasing Perennials.  Perennials are plants that come back year after year.  In general, they are a little more expensive than annuals (those that grow one season and die) but they can be found on sale. Almost all of my plant purchases are perennials.  You buy once and they last for years.
  • I have recently learned that many annuals will sometimes survive if you have a place to put them inside (if they’re in pots) for the winter.  An acquaintance I met at Lowe’s (y’all I talk to everybody) said many plants sold as annuals will come back the next year even outside because our winters here in way-South-Alabama are so mild.

If you want some natural beauty but don’t have much to spend it CAN be done!

I love daisies of all kinds. This one wasn’t on sale but it was really calling my name!
Our deck. This walks out to the area I like to sit near the pool. I have to let our dogs out multiple times a day and see these beauties every time I do. I can also see them through my blinds when they’re open.
The jasmine hanging over the deck rail has been growing about 3 years. It will only bloom for me a short time, but I’ve learned to be happy with the green backdrop it provides. I sit at a table right beside this flower bed when I read my Bible in the mornings and have my coffee. I will continue to fill in the open spaces in this flower bed little by little.

I sincerely hope that you will be encouraged and inspired to give gardening a try even if you never thought you could.  With anything, the biggest step is the first, so Just Start.    I think you’ll be so glad you did.  And then I want to see pictures!  If you already garden, I want to see those pics too!

Till next week friends,

Josette

To Date or Not to Date?

Tweens: Preparing for the Teen Years. To Date or Not to Date?

I’m so honored to be guest posting today at Like Minded Musings as part of a 30 day blog party offering encouragement to parents of tweens.

It might seem as though the tween-age years is too young to think about our children and dating, but it isn’t.  While they are tweens is the perfect time to put a plan in place for the future.  In fact, if you don’t want your child to date during the early and middle teenage years, your time is well spent coming up with a plan now to win their hearts over to that idea.

While you could enforce whatever you decide is best, it’s so much better to help them see for themselves that dating at a young age isn’t a good idea.  We don’t want our child to have a rebellious heart toward us because they think we’re keeping from them a “right” of the teenage years that everyone else, even those with good, Christian parents seems to have.

How can we avoid that rebellion and the heartache and angst that so often comes with teenage dating?

continue reading this post at Like Minded Musings

Tips for Helping Your Child or Adult With DS Adjust to CPAP/APAP/

Like I talked about in a recent post, a very high percentage of people with Down syndrome have sleep apnea.  In that blog post I referenced several links with research related to DS and apnea.  You can go here to read the original post on sleep apnea and get your free printables with helpful tips for the actual sleep study.

I’ve talked with 3 friends in the last 2 weeks whose adult children with DS recently had sleep studies.  All three have severe sleep apnea.  One of the moms said she had not noticed any obvious signs of apnea.  Her daughter stopped breathing 35 times an hour.  Another dad had noticed that his adult son was restless and difficult to share a bed with when they were in a hotel recently.  That was the only noticeable symptom.  In his sleep study he stopped breathing 86 times per hour.  That’s more than once per minute!

I recently had the opportunity to speak to the head of the department at the hospital where Jessie had her sleep study.  He said 100% of the people with Down syndrome that they have done studies on so far have had sleep apnea.  One hundred percent.

When Jessie was diagnosed with sleep apnea her index was in the mild to moderate range.  15 times per hour is the beginning of the moderate range.  While she was just barely below the range of CPAP being an a necessity, the pulmonologist was certain that in time her apnea would get worse without treatment so we decided to go ahead.  She already has a lower energy level and requires a lot of sleep so we wanted to do all we can to ensure she gets as good a quality of sleep as possible.

Although they are most often referred to as CPAP (continuous positive airway pressure), most often today APAP (automatic positive airway pressure) is what is prescribed.  You can read more here about a comparison of the two types of machines.  The amount of pressure forcing the air is automatically changing as it senses the need.  BiPap has two pressure settings, one for inhalation and one for exhalation and is used for patients with higher pressure strengths or low oxygen levels.  You can read here about the difference between CPAP and BiPap.

Considerations in Choosing a Mask:

  • My husband was non compliant with his CPAP for years.  He tried several other options first, resisting the idea of a full face mask, but in the end that is what has been much more comfortable for him.  He assumed it would be the most bothersome because it covers the most area, but resorted to trying it after he couldn’t stick with other options.  He sometimes has issues breathing through his nose and when using a full face mask that is a non issue.
  • Because of his experience, I asked the doctor about Jessie and told him I sometimes noticed that in the morning her lips were dry from mouth breathing.  If you have a sometimes mouth-breather you will want to go with a full face mask.
  • It was recommended to us that if you have difficulty with fit and comfort of your mask try another. Give it a little time, but we were encouraged to find what worked during the early period while the machine was still a rental.

Getting Used to CPAP/APAP/Bipap Therapy

It took Jessie about 2 weeks to adjust to wearing her APAP machine.  She was used to sleeping with her sister.  She, at that point, had never slept alone, so I knew that I would need to sleep with her to get her used to sleeping with the mask on her face.  She had seen her daddy sleep with his mask so she was familiar with what it looked like.  She had told me before the sleep study that she didn’t want a mask to sleep with.

There are several things that take some getting used to. Initially, any one of these might wake you or cause you to have trouble falling asleep.  Jessie does not have a lot of sensory issues, but some.  She did really well with her APAP, but for kids who have some sensory issues, there is a lot of sensory input going on.

  • Feeling/awareness of the mask on your face
  • Feeling the straps etc (all over your head), how it feels on your hair
  • Feeling the hose moving when you roll over
  • Getting used to breathing out with air blowing in your face

Can I just go ahead and say here though, the only way to get used to it, is to actually wear it enough to get used to it.

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Jessie was bribed to let me take this picture for the post 🙂 


I wanted to know what it felt like, so I would have a better idea what I was expecting Jessie to do. I put the mask on my face.  I immediately REALLY didn’t like trying to exhale with air being forced back at me.  And hers isn’t set at a high pressure setting, this would be even more bothersome at a higher pressure setting.  I knew she needed to wear it, but feeling it for myself made me more patient with her in helping her work through it.

Our insurance (and I think many insurances work this way today) wasn’t going to pay their portion for the machine until they saw that she was consistently wearing it.  The machine would be considered a rental until she met their requirements of wearing it at least 6 hours a night for “most” of 30 days in a row.  This was an incentive for me to help her get off to a good start.  In the long run I’m kind of glad.  It forced us to be consistent.

I put Jessie in bed with me.  I can’t sleep in the middle, so that meant I had to sleep with the hose to her machine laying across my face for the better part of two weeks.  That wasn’t super fun.  I learned later about this cord bundler that could have helped with that, but I didn’t know about it then.

I would start Jessie off with the mask on and lay with her and talk with her for a for minutes to help her relax.  Initially, it took her a good few minutes to go to sleep.  She would startle awake sometimes during the night.  I would mostly try to talk to her to soothe her back to sleep without removing the mask.  If she needed a break I would take it off for a couple of minutes and put it right back on.  The first night she made it several hours with the mask on.  The first 2-3 nights were when she woke the most.  She got more used to having it there each night that went by.

I didn’t want Jessie to be in another room where she could remove the mask during the night without me knowing until she was very comfortable wearing it so that she would be less likely to.  After about a week she was pretty comfortable with it and at about 2 weeks she was doing excellent.

The APAP machine came with a modem in it that enabled the pharmacy (where it was rented from), the insurance company, and her doctor to be able to tell how long Jessie wore the APAP, how well the mask fit (if there was leakage out of the mask) and how many times she was experiencing episodes of apnea.  I was able to download an app on my phone to access that same information.  It was very helpful for me to know once I wasn’t sleeping with her how long she kept the mask on.  I didn’t have to rely on her to know or be truthful 🙂

The first night that I put her back in Jordan’s room, Jordan slept elsewhere and I slept with Jessie so that she was exactly in the spot she would typically sleep in.  I only slept there with her one or two nights.

After that initial time, there were occasionally times that Jessie would remove her mask during the night.  I would ask her why and it was usually something like that air had been leaking from the mask and blowing in her eye.  Sometimes either she couldn’t find the words to explain or she just wanted to take it off.

Even when there were legitimate reasons for taking her mask off, I stressed to her how important it was for us to fix the problems so that she could keep her mask on all night every night.  There was a clock she could see beside her bed.  Initially, I would tell her she couldn’t take the mask off before a certain set time, and most of the time she wouldn’t. Now, she rarely ever takes it off before she’s getting up for the day.

Mask Tips:

It takes a while to get the straps adjusted to where there is less leakage.  Once I found the right spot I marked the strap with permanent marker so we could easily set it to the right spot each night.  It’s also helpful to wash the rubbery part of the face mask every night or every other night with a baby wipe.  This helps keep the facial oils from causing the mask to slip out of place.


I was worried that Jessie would break one of the side clips if she took it off that way.  We didn’t want to have to readjust ALL the straps every night so she just un-straps the one velcro strap you see marked with red marker.  Everything else stays set.  At bedtime, I slip the mask on and tighten just that one strap.  Easy peasy.

Those Pesky Cords

One of my friends uses this Command Cord Bundler to keep the hose off her son’s body when rolling over.  I bought one of these for Jessie, but she had already gotten used to her APAP and preferred it without this so we don’t use it. I’ve been meaning to try the additional hook (came with 2) to see if my husband would like it.

Compliance or Non-Compliance Becomes a Habit

Now, when I put her mask on, she is relaxed and it’s just part of the routine like brushing your teeth.  We usually talk for a minute first, because once we put the mask on it’s hard to understand anything she says.  Every third day I wash out the part that holds the water and refill it.  The other two nights I just add distilled water as needed.

I’ve talked to a couple of parents who haven’t achieved consistency with their child wearing the CPAP every night.  Honestly, just like with any other behavior, the more you let them get away with not wearing it, the more they establish non-compliance with CPAP as a habit.  The CPAP is important for their health, therefore it is non-negotiable.

Try to solve any issues they have with it bothering them the best you can and then require it of them and they will comply.  As Dr. Phil would say, find out what their currency is (what you have control over that they want) and use that as a motivator.  Whether it be tv time, Ipad, etc. (choose one not all so they are motivated not discouraged) they only get that thing if they keep their CPAP on a certain amount of hours per night. The amount of hours you would expect at first would be less and then longer as they get more used to it and tolerate it better.

Clearly, I’m not saying throw them in their room and say, “Keep it on or else!”  I am saying, find out what the issues are the best you can, work to solve them and require that they wear it.  Quality sleep is so important for their health.

 

After Jessie had been wearing it a while I didn’t worry about it if she took off the mask during the night one night.  But if she did it two nights in a row I was quick to address it so it couldn’t become a habit.

I Really Hope This Helps You!

I really hope that sharing our story and tips we learned along the way will be helpful! Whatever the topic I’m writing about, I’m always hoping that something I’ve learned along the way will be of help to someone else.  I hope you have a smooth and mostly-anxiety-free transition to using APAP!

If you have any tips to add that I’ve missed, I would be happy to add them to the post so moms and dads have the best chance at getting this whole CPAP thing to work for them.  If this is helpful to you will you please let me know?  And share it with your friends who have a child with Down syndrome!  We really need to get the word out how important it is to have a sleep study and do what we can to make the process as painless as is possible!

Good luck!

Josette

 

Spring: A Time of Beauty, Scheduling Chaos and Evaluating Commitments

There is so much that I love about spring!  Spring is a favorite season of many, with good reason.  Everything comes back to life.  Beautiful blooms.  Sweet scents in the air.  Birds are singin’ and kittens are born.  For a brief time here in way-south-Alabama, it is the perfect time to enjoy the outdoors before the blistering heat of summer.

I love to sit outside.  Just sit.  With a cup of coffee or something cold to drink and just have a moment to listen to the birds and think.

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I have learned that when I don’t have time to just “think my own thoughts” as I used to say to my older kids when I needed them to skedaddle (leave) for a minute, I feel anxious and stressed.

While I love so many things about spring, it is one of the busiest times in our year.  And too busy is something I really dislike.

When my older two were at home and we were homeschooling I would find myself constantly evaluating our level of activity.   There is such a fine line between fun-busy and crazy-busy.  I read this book a couple of years ago, “The Best Yes:  Making Wise Decisions in the Midst of Endless Demands.”   If you find yourself in the place of having a tough time finding the balance between fun and crazy, I highly recommend it.  While it contains some things we already know, I found the book to be very helpful.  It helped me to see through some of the reasons I say yes when I should say no.  I plan to re-read it this summer.

I struggle with disappointing anyone by telling them no.  I really find it hard to tell Jessie no when she wants to do it all.  I struggle too with feeling confident about what God would have me do.

I find that the rest of the year I teeter on the edge here and there and then SPRING.  Spring points out that I really have already been at my maximum all year and that any additions to our schedule make me unable to be my best at things I really care about.  

Whenever you say yes to something, there is less of you for something else.  Be sure your yes is worth the less.  -Lisa TerKeurst, The Best Yes: Making Wise Decisions in the Midst of Endless Demands

Baseball starts at just the time when I plant a small garden and the yard starts to need attention.  We have a ball game every Saturday.  Weddings and graduations.  All good things.   But so many good things that all the mamas I know are like me, overwhelmed and stretched thin.


I know many other moms whose kids are involved in the same activities we are feel the same.  Just trying to make it till next weekend.  This coming week, we have our last Miracle league baseball game, banquet,  our last swim practice, and we just had our last gymnastics practice.  Our State Special Olympics where Jessie will compete in gymnastics on Saturday and then it all stops for the summer.  

Jessie has summer morning camps planned but there will be a month of breathing room before that begins.  I desperately need the breathing room.

All year I make a mental list of things I want to accomplish in the summer.  Cleaning out closets and drawers, going through clothes, baseboards.   Yeah, other than a swipe with the broom or vacuum I don’t actually wipe baseboards the rest of the year.  If ya’ll manage to do that, you probably do a better job of managing your commitments 🙂  I am looking forward to re-painting several rooms this summer (I hope!) and spending some time relaxing by the pool.  I want to let Jessie have friends over, something I don’t do when she has so many other activities on our schedule.

It is just so hard to decide which things I’m supposed to let go of.  They are all good things!  But I have been praying and have decided to let go of a commitment I have had for a long time.  I have also decided not to say yes to anything new for just a bit.  I have a hard time sticking to that.  It’s not for forever.  But I need a good deep breath of not feeling so pressed, so scheduled.

I’m saying no to some things so I can say yes to others.

There are people God has put on my heart to be more available to.  I’m making room.

If like me, you have decisions to make about where you commit your time here’s a link to quotes from The Best Yes for further inspiration.  Here’s a link to The Best Yes:  Making Wise Decisions in the Midst of Endless Demands.

I hope that even if you’re feeling stressed, you’re drinking in all the beauty of spring.

Till next week friends,

Josette

Today Through Sunday Cents of Style Tunic Sale, Some Under $15!

*This post contains affiliate links, see disclosure policy for details*

Today through Sunday, 5/5-5/7 Cents of Style Fashion Friday has tunics for under $15!  I haven’t tried their tunics but I have been loving Cents of Style.  I own several of their graphic tees and the Just Start bracelet in yesterday’s post came from there as well as a pair of earrings I snagged for 99 cents.  I watch for sales and they have great ones!  Today, it’s tunics.  Use code FFTUNIC for 40% off the lowest marked price and FREE SHIPPING!

The swing tunic for Fashion Friday is under $15 and available in lots of colors.

 

 

Baby doll tunics under $21 with FREE SHIPPING

 

 

 

 

 

 

 

 

 

 

And a great selection of colors to choose from.

 

 

There are other styles too.  So, if you are in need of any tunics to pair with your leggings or skinny jeans, check these out!  Click on any of the images to go to Cents of Style.

My Focus for the Year: Just Start

This post is more for my fellow procrastinators.  The rest of you might not be able to relate to this one.  But I feel sure that there are some this might encourage.

It’s been popular for several years now to choose a word or phrase that sums up your focus for the year.  Lots of bloggers publish their “one word” in January, you know, at the beginning of the year when everyone is making resolutions and setting goals.  I’ve never been one to be on time 🙂  And, I don’t make resolutions cause I know (for me) they don’t last.

I didn’t pick a focus phrase for the year but as the year has progressed one phrase has become my focus:  Just Start.  Whatever it is on your list that you’ve determined is what you should do next, even if it feels overwhelming, just start.

I started this blog in November 2016.  I bought this bracelet right around that same time.  In the beginning, the “Just Start” was about blog related things.  Whatever it was I needed to learn next, just start.  Whatever I wanted to procrastinate on because it was hard, just start.  I told myself often, Just Start.

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I’ve been wearing this bracelet every day. There have only been a few exceptions when it just really didn’t jive with what I was wearing. Other than those few days, I’ve worn it and thought about it every single day.  I’ve worn it and thought about it so much that when I’m at home and not wearing any jewelry, I will still think of it on my arm.  Just start.

The bracelet has been a good reminder to me and has actually inspired me to just start with many projects that don’t have anything to do with the blog.  Reading this book, wearing the bracelet and seeing the progress I have made in different areas has been fuel to keep me going in a good direction.

I was surprised a couple of years ago when I read that sometimes procrastination is really a form of perfectionism.  Say what?!  Yes, really.  I know its true for me that sometimes if I feel I can’t fully complete a task or do what I consider to be a good job, I just wouldn’t start it at all.  A friend of mine has confessed to the same.  Perfectionist sounds slightly better than procrastinator so I might like that.

In this book the author referred to naturally, habitually messy people as “messies” and those that keep a clean and tidy home and make it look pretty easy as “cleanies”.  She pointed out, as an example that “the messies” were less likely to pick up little things they noticed on the carpet because they were going to vacuum later anyway.  They would just wait and do the job completely, rather than doing little things all along.  “Cleanies” she said would, almost without thinking just pick up those things on the carpet (and whatever other little things that came along) and as a result their homes tended to stay more tidy.

There are so many areas of my life where I realize I do this.  Put off a project until I can set aside a large lump of time to knock out the whole project.  I have really attempted more and more though, even if I know I can’t do the entire project, to just start.  Most of the time once I get started the progress I see will give me the motivation to keep going.

In recent years I have increasingly felt that I really wanted to rid my home of clutter and things we own that we don’t use.  I don’t want to dust anything that I don’t absolutely love.  I don’t want our closets filled with things we aren’t wearing.  I will never be a true minimalist, but I do want to own a lot less stuff than we currently do.

It is a slow process when everyone in your home doesn’t feel the same 🙂  Slowly but surely though, more and more bags of stuff that we will never miss is being weeded through.  Sometimes just a couple of bags at the time.   That is a new way of approaching it for me.

A couple of months ago, I knew there wasn’t time to go through every single thing in my closet. I told myself to just start.   One day I went through a bunch of event t-shirts that I’ve been putting off deciding what to do with them. Another day when I had more time I went through most of my clothes and shoes.  That was 2 or 3 bags.  One week I spent a few hours going through books on one of my several bookshelves.  Two boxes to donate.

I have gotten started on a task I really dislike.  I still have a lot of homeschooling books from when my oldest two were homeschooling. I had specific things in mind for home projects I would want to use the money for if I could sell some of these things.  It’s a huge job.   Looking online to see if the materials are current and figuring out what the value is, taking photos and listing them on Facebook for sale.  This one I did put off for about a month before I could finally make myself get started.  Unlike most other things, this particular task is one that even once started I still put off.  I just hate the whole process.

I want my friend Pam from Tennessee to have a comfortable guest room to sleep in when she comes to visit this summer.  Jessie’s old room (Jessie has moved to what was Jordan’s room) is going to become our guest room, maybe with multi-purposes, not sure.  Currently there are 5 kittens and a mama cat residing there.   They are getting close to being ready to go to their new homes.

As a starting point, this week I took a car load of stuff that had been stored in Jessie’s old closet to married daughter’s house.  There are still more things of hers in the closet.  I tend to want to get it all done in one big sweep.  But this time I grabbed a car load full and took it and put in her guest room closet when she wasn’t home 🙂  Done.  Now that I can see progress in the room it gives me incentive to keep going!

So often, I feel I must have it all planned out perfectly before I can begin.  I am realizing though more and more that done truly is better than perfect.

I have one last example.  I guess I’ve been learning this for a while, it’s just been a full throttle, all out, every-area-of-my-life focus this year.

Three years ago I had been wanting a flower bed in my back yard for a long time.  I knew I wanted some natural beauty that I could see and enjoy when I sit outside to read or relax and would be in my view from the pool.  I felt so stumped over exactly where to make a flower bed and what to start with since I couldn’t afford to spend a lot at one time.  I finally decided on a location, that I wasn’t sure was the perfect one and began to add plants just a couple at a time.  A Gerber daisy here.  Some climbing jasmine there.  I stuck with low maintenance perennials and just one or two at a time.

I’m not sure if I were making the decision today, that I wouldn’t change the location of that flower bed.  Even so, I’m glad I did it and that those plants, some of them, have been growing and being enjoyed for 3 years.

That flower bed, as imperfect as it still is, brings me so much joy!  I love seeing it every time I step outside.  I have started adding some potted plants on the deck.  Something I can see every time I open the door to let the dogs and cat in and out.  I love watching them grow.  The progress has been slow, one or two additions at a time, so it doesn’t cripple the pocket-book.

These are my examples of projects that I applied the Just Start to.  What is your project that you KNOW if you could JUST START that you would keep making progress? Think about how much better you would feel once you get going.  Keeping the project going is so much easier than getting started!  Put a note on the refrigerator or a reminder  on the calendar or in your phone, whatever the thing is that will remind you to Just Start.  You’ll be so glad you did.

I hope this encourages you.  A month from now you could be looking back and thinking about what you have accomplished.  Today is a good day to get started.

Till next week,

Josette

So, It Turns Out I Was Causing Our Cat to Have Seizures. You Might Be Doing This Same Thing.

A couple of months or so ago our cat started having seizures.  She was almost 13 years old.  When I started googling it, I was able to put together that just before she started having seizures she had thrown up a few times randomly.   Not the hair ball throw up, but undigested food suddenly throw up.  She had never done this before.

We went to the vet who confirmed that what we were seeing was seizures.

A friend whose dog  has seizures said getting too hot can trigger one for her Phoebe.  She also seems to be more vulnerable to having one in a higher stress situation like a new dog groomer or boarding at a new place.

Our vet said most of the time in cats there doesn’t seem to be a particular reason, as far as an event setting them off.  I had recently been squirting her with a water bottle when I would see her on the kitchen table and wanted to be sure that wasn’t likely to cause her to have a seizure by startling and upsetting her.

I never dreamed that diffusing citrus essential oils was the cause of her seizures.

I had used some lavender on my dog’s ears before during a storm because I had heard that could help with the anxiety.  In the research I did, it did say citrus oils were dangerous for cats, that you shouldn’t ever put citrus oils on them or touch them after handling the oils without washing your hands.  I didn’t read anything that made me feel sure that I couldn’t diffuse the oils.  I did pay attention when I first started diffusing them, but she didn’t seem to have a problem right away so I forgot about it.

Our vet prescribed Valium for the seizures.  We started on the lowest dose and when she continued to have seizures we increased the dosage.  Older cats are lazy anyway, but she was being pretty sedated.   She’s a really persnickety cat, so we liked her more mellow medicated personality better 🙂

One day it just randomly popped in my head to question could it be the essential oils?

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So I asked my friend google again and this time it came up looking a little more certain (in one person’s opinion) that diffusing them could be enough exposure to be dangerous.  I told Jay what I was thinking and I stopped diffusing any citrus oils.  We decided to start lowering her Valium dose and see what happened.  She was taking enough that it probably wasn’t safe to just stop it cold turkey.

We got her medicine dosage down to where she was not taking any in the morning.  No seizures.  We continued the night time dose and then began to lower it.  She’s outside some, and sometimes even inside we wouldn’t always see her when she would have a seizure.  Most of the time when she had a seizure she would pee, so we watched for any suspicious wet spots as well as catching her having a seizure.

It’s been more than a week now that she hasn’t had any medicine and no seizures.  She had been having seizures at one point more than one a day or at least daily.

I feel confident the culprit was the essential oils.  This makes me REALLY sad because I LOVE to diffuse citrus oils.  They’re my favorite and do a good job of making the house not smell doggy or stale.  I miss them.  I was feeling pretty irritated about it honestly, because without Valium, this cat isn’t all that sweet.

We decided to keep one of the 5 kittens Jay rescued. You can find that story here.  I knew that Jay would want one and Evan kept nagging me that it wasn’t right of me to not let Jay keep one of them.  They are all so sweet and I have gotten so fond of all of them. They all have homes when they get just a bit older, Hallelejah!

Jay loves Buddy, that’s his name.  It fits him.  He’s Jay’s little Buddy.  And Buddy is sweet.  So that helps me be a little less resentful about giving up diffusing citrus oils.  I still have a lot of them and want to find other ways to use them that won’t cause them harm.  Maybe cleaning sprays?

 

This is sweet little Buddy

Next time we visit our vet I will mention it so he can warn other cat owners about the danger of diffusing citrus oils.

It’s a beautiful day in South Alabama.  I’m typing this with coffee beside me under the shade of an umbrella on the pool deck.  The pool is getting bluer and no longer swampy green.  It’s almost summer and most of the summer is a slower pace.  Yippee!

Hold on, y’all.  The spring is crazy busy but summer’s comin’.

Hope your day is beautiful.

 

 

 

If Your Child has Down Syndrome This Is What You Need To Know About Sleep Apnea

While the incidence of sleep apnea in people with Down syndrome is much higher than the general population, I find that this information isn’t well known yet in much of  the Down syndrome community.  From NDSS (National Down Syndrome Society), “There is a 50-100% incidence of obstructive sleep apnea in individuals with Down Syndrome, with almost 60% of children with Down syndrome having abnormal sleep studies by age 3.5 – 4 years. The overall incidence of obstructive sleep apnea increases as children grow older.” Those are pretty startling statistics to me.

Most everyone today is aware of what sleep apnea is.  Most everyone knows the health effects of having undiagnosed sleep apnea.  We all know someone who uses a CPAP machine to sleep.  What doesn’t seem to be well known yet is just how common sleep apnea is in persons with Down syndrome.

While I’ve read that some disagree, Jessie’s pulmonologist (the doctor who read her sleep study results and explained them to me) said he believes that 100% of people with Down syndrome will develop sleep apnea over the course of their life time.  Wow.

In many cases, and it was true in ours, there are no obvious signs of sleep apnea.   I didn’t have any reason to suspect Jessie had sleep apnea.  I heard a speaker at a conference say it was now recommended for all people with DS to have a sleep study by age 4, so I made the appointment.  I wasn’t in a hurry about it because I KNEW the common signs of apnea and Jessie didn’t have them.  Jessie was much older than the recommended age because this just wasn’t on my radar at all.  I try to keep up with health recommendations and in general with the info that is available about Down syndrome.  This recommendation hasn’t been well circulated yet.

I’m familiar with what sleep apnea most commonly looks like but Jessie wasn’t having any of those obvious symptoms. My husband has sleep apnea and my son did when he was 3 and his tonsils were large, and Jessie did too when her adenoids were huge.  No snoring, no obvious stopping of breathing.  None of the sitting up and odd sleep positions like she had prior to having her adenoids removed.  She did however wake up fairly often during the night.  That alone just didn’t ring any bells for me.

At a regular check up I mentioned it to our pediatrician.  He scheduled her for a sleep study.  Although many of the articles I read recommend seeing an ENT as a first step, Jessie had already had her adenoids removed and her tonsils were not enlarged, so we went straight to the sleep study.  Dr. Brown, our pediatrician, said he felt confident that our local hospital could do a good sleep study for Jessie; he assured me he felt very comfortable and confident with it.  He chose which doctor he wanted to read the results, a pulmonologist that he knew read many sleep studies specifically for children since we were not going to a Children’s Hospital.

With no obvious sleep apnea symptoms, when she had a sleep study she was diagnosed with mild to moderate sleep apnea. One or two points below the moderate.  I was a little surprised.

Jessie was very cooperative with being hooked up to all the wires and as long as I was right there with her, she didn’t mind too much sleeping there and being in a different place.  Even though it was in the hospital, the sleep studies are done in a room that seems more like a bedroom, in a regular bed not a hospital bed.  We had been talking about it for a couple of days so she was familiar with what we were going to do.  Before going to a sleep study I would recommend telling or showing pictures of someone hooked up to all the wires so your child has an idea what to expect.

We had a little time to relax before they got her all hooked up. Just being silly, playing with the phone and snuggling.

I had explained to Jessie that they would attach little sticky things to her hair, her head, and chest to see how she was breathing when she was asleep.  She was a little anxious before we got there, but when we arrived we dealt primarily with just one person and she was sweet and friendly and in a few minutes Jessie felt more relaxed.  She saw that it was just as I had explained it to her.  Knowing what to expect definitely made it easier for her.

All hooked up and ready to….sleep? It took her a little bit to get comfortable, but she did manage to sleep.

Every environment is different I’m sure, but at Flowers Hospital  where Jessie had her overnight study, they allowed me to sleep in the bed with Jessie because she was used to sleeping with her sister.  She would not have been able to go to sleep and stay asleep alone so they allowed me to sleep with her.  It is their preference that the parent sleep separately in the room if they need to be there, so that if the parent snores, etc it doesn’t interfere/confuse them as to who is snoring.

After Jessie’s sleep study when we saw her pediatrician, he asked if we wanted to be sent straight to a CPAP provider or if we wanted to consult with the pulmonologist that had read her sleep study so that it could be explained to me.  I chose to consult with the pulmonologist.  I’m so glad I did.  He was able to give me a lot more information and I highly recommend speaking directly with whichever doctor can give you this info. Her pediatrician was able to give me some basic numbers and facts, but this isn’t his specialty.  The pulmonologist gave me a good explanation of what was normal and what Jessie’s results were.

When my husband and son had sleep studies it was ordered and read by a neurologist.  Jessie’s pulmonologist and Jay’s neurologist were both listed in the category of “Sleep Medicine”.

Dr. Sexton, our Pulmonologist, explained that Jessie’s apnea wasn’t severe enough that we had to start CPAP right away.  He also told us that he was certain that over time her apnea would get worse and would later fall into the range requiring CPAP.

Jessie has always required a lot of sleep.  She feels best when she gets 10-12 hours.  She is on thyroid medicine for hypothyroid and still has a low energy level.  I knew that if there was a chance that CPAP would make her feel better we wanted to start right away.  I didn’t see any real benefit to waiting. She was going to have to eventually get used to the CPAP, so might as well do it now.

Jessie does still have a lower energy level than people without Down syndrome and I think maybe lower than some with Down syndrome.   I can tell that she does feel more rested in the mornings since using the CPAP.

The two HUGE differences though are that she falls asleep much more quickly and stays asleep all night most nights.  Before CPAP, if no one was in the bed with her she might lay there for an hour or more even if she was really tired.  Now, she relaxes right away as soon as the mask is put on her face and goes to sleep within a few minutes.

It used to be even when sleeping with her sister, Jessie would tell me things the next morning that let me know she was waking up at night.  She doesn’t do that very often now.  She sleeps much more soundly.  She will still be woken by a storm or the cat wandering into her room (she won’t sleep with the door closed) but she sleeps so much better.

I read quite a few articles about Down syndrome and sleep apnea.  Here are a couple of good links.  This article from NDSS explains apnea as it pertains specifically to Down syndrome.  This article by Sally Schott (the source of the NDSS article) and goes into a little more detail and makes this recommendation, “Sleep studies in children have different definitions and techniques of analysis compared to adult sleep studies. It is better to go to a pediatric sleep lab if possible because of these differences to insure correct data analysis of sleep study results. In addition, the sleep technicians at pediatric centers are more familiar with doing sleep studies on children who may repeatedly try to remove the multiple monitors that are used in a sleep study.”

This article by the Journal of Sleep Medicine is more technical but I found it interesting.  It details a study done on adults with Down syndrome.

If you would like to receive a printable story that you can read with your child, which includes the picture of Jessie all hooked up to help them better understand what to expect, sign up below.  I have written a story for younger children (short, one page) and one for an older child/teen/adult (2 pages with photos).  I will also send you a checklist of things to consider/ask in preparation for your appointment.

When explaining to Jessie what to expect at her sleep study I would have found it easier with photos.  I hope the printables I created will help you!  I would love your feedback to know if you find these helpful.

I find myself asking every person I know lately, “have they (your child) had a sleep study?  Well, they need to, this is what I read….”

So schedule yours! And good luck!

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