Another Sleep Doctor

We went to another sleep doctor last week.  It was our first venture outside of the Children's Hospital network so I wasn't sure what to expect.  It started out a little rough because the doctor is only at the location close to us one day a week, in the afternoon.  (Read: during naptime)  Justin was a little sleepy, but the appointment turned out fabulous anyway.

I brought the copy of our latest sleep study and went over the timeline of our sleep issues and the doctor listened very intently and asked questions.  It was a very thorough discussion and I felt really good about the way things started.  I asked if it is really possible to get a complete view of what a person's sleep is like in a one-night sleep study and he said no.  It usually takes at least a week of observation to develop a somewhat reliable picture of a person's sleep pattern and routine.  That makes sense to me and to have a doctor say it means that now I know he won't come to conclusions (or write me off!) quite as easily as our other doctor.

Then he said that he thinks that the machine is not set at the optimal pressure for Justin and we need to do some experimenting.  (That's when the sky opened and I saw the light.)  He is willing to adjust the pressure and then look at the data from the DME (which he doesn't assume to be completely useless) and consider what needs to be done next.  He is going to look at the reports and see us every few weeks after a setting change to hear our report of Justin's behavior.  He is willing to change the setting without a sleep study every time!  You can DO that?  That is amazing and wonderful!

He said that he would take over monitoring of our CPAP machine, which he did with lightening speed within about 2 hours of our appointment.  AND he changed the pressure so as soon as Justin is feeling better (not throwing up) we can see how it works.  So I cancelled my hard-fought-for sleep study appointment for later this month and we will try this approach.  I am feeling good.  So happy we saw this doctor and praying that this is good for our family's sleep.  We need some good sleep before baby comes, because I am pretty convinced that our daughter is going to be the worst sleeper of the bunch.  She doesn't sleep very much at all now and it's dark and warm in there.  What are we in for next??

A Few Things

So I know I haven't posted very much lately because well, we've been busy and I chose sleep above blogging.  There has been a bunch of stuff going on so here's the Cliff Notes version.  I promise to expound...soon.

• Randy and I both caught some weird virus and I have been blowing my nose for about 3 weeks now.  Where does it all come from?
• Justin became too constipated for us to clear out so when he started throwing up water we headed for the ER.  Again.
• The next day Travis threw up out of nowhere.  All over our bed.  Really?
• Justin got better, then he threw up again last night.  Out of nowhere.
• We went to another sleep doctor.  He does not believe that a one night sleep study can capture all of the issues with a person's sleep.  The skies opened and the angels sang.  It was beautiful.  I have hope for a less sleepy child.
• I think we are going to have a flat baby.  Since the kids have been sick they have been laying all over me.  I am convinced our little girl is going to come out flat from all the pressure.  Do you think that will make it easier or harder to give birth?
• Travis is doing really well with reading.  He is reading to Justin at a quick enough pace that Justin doesn't get frustrated and leave and then Travis yells at him to get back and a fight ensues.  I like that.
• The kids are still getting up early.  I am trying to be less frustrated with them.  At 9 am when Travis puts his head on the desk while we are doing school and he says "I'm tired" it takes everything I have not to yell at him and tell him that if he slept while in his bed, maybe he wouldn't be so tired.  Some days it takes a lot...
• A sleepy Justin requires much more carrying.  He's heavy.  So am I.  Not a good combination.
• We are no closer to naming our daughter.  Some friends are starting to show their frustration with us.  We still have a little time!
• We are going to have a baby very soon!

Breakfast Time

One of Justin's favorite breakfasts includes some flavor of smoothie.  This turned out to be one of his more colorful post-smoothie looks.  It didn't all end up on their faces, I promise!  (Do you see how dark it was outside, I tell you they get up early!)

Flat Diego

A friend of mine asked us to host a Flat Stanley doll (whose name is actually Flat Diego) last week so we had some fun doing a few different things with him.

We went to LTC (Leadership Training for Christ) Bible Bowl to watch a friend and Diego went with us.  The boys were in a silly mood...

He hunted for eggs with us before Easter.

He checked out some wild flowers.  Unfortunately the bluebonnets are all gone already.

Since I am not working, I sent him with me friend to Honduras.  They had fun with him there too.

And to El Salvador.

He went with us for doughnuts.

And he met our fabulous doughnut lady.

He went to therapy, and it looks like the boys played tug of war with him!

Justin showed off his scar.

Travis took him to school.

Back to therapy for a (sort of) better picture.

To swimming lessons.  For being a paper doll, he was very brave near the water.

And to get new orthotics.  Our orthotist was a great sport and let us get some good pictures.

We enjoyed Flat Diego's visit although some of the boys' poor sleep patterns may have worn off on him.  I am hoping the dark ride home in the envelope got him back on track!



Soccer Madness!

Travis has been wanting to play soccer for a long time now and it finally worked out that he could play (and I could watch) since I am not working on the weekends anymore (until after baby sometime).  So Travis had his first soccer game this past weekend and he loved it!  I heard him say, "Thanks mommy, for signing me up for soccer" completely unprompted!  So I can trust the sincerity of his comment.  He was on the green team this game and they did very well!

Pop and Justin were cheering.  Go Travis!

And Justin took a couple of pictures too.  After the game was over.

Randy commented that he had heard about little kids sports games but he had never seen one in person.  It is quite a sight to watch "swarm ball" and see the ball miss the goal after rolling for 10 feet and all the kids just standing by to see what happens.  At this age it is very easy to see who has played before and who hasn't.  (Travis hasn't.)  We all had a great time cheering for all the players on both sides and laughing and groaning at the funny plays.  We see how Travis' overdramatic personality translates to team sports.  He falls all over the field and runs around the ball rather than running at it to kick it.  He is also a good assistant coach as he was reinforcing all the head coach's comments.  He is playing in a church league and he got a sticker for Christlikeness for remembering his Bible verse and encouraging his teammates.  So far this has been a great experience.  The whole family is loving it!

Justin Update

So now that Justin is a big boy of four years, what is he up to?

• His very favorite thing right now is Veggie Tales Larry Boy.  He wakes up and points to the TV and asks to watch his shows.  Every day.  All the time.  He loves dancing to the songs and listening to them (and trying to dance) in the car too.  We have had to implement a rotation to choose what is played in the car so that I do not go crazy listening to assorted Veggie Tales music.  I even called and complained to my sister about sending another Veggie Tales CD.  (Even though I kind of asked for it...)
• He is growing!  He may still be on the third summer of 18-month shorts, but we have been able to take out the tucks that we sewed in two years ago to keep them from falling off.  And I think I see his knees peeking out from under them!  Plus he got new orthotics this week, another sure sign of growth.  We hosted a Flat Stanley doll this past week (actually, his name is Flat Diego) so he went with us to meet Justin's orthotist.  Justin actually got Veggie Tales characters on his orthotics this time.  He thinks they are very cool!

• He has had a veritable verbal explosion!  Randy and I both agree that in the past month or so he has added another huge set of new words to his vocabulary.  And Miss Sarah brought out a list of words that he said during speech therapy just during the last 15 minutes or so because she was noticing that he was saying so much!  Even some new words that surprised her (like "rain", which I have never heard yet, although I was really trying to make him say it the other day.  Maybe if it would rain...)  He is saying and learning words like kids usually learn (hearing and repeating) instead of the usual drilling and reinforcing that it so often requires.  Yeah!  And others are understanding more too.  Double yeah!
• He has been struggling with learning to jump (not squatting excessively and then springing off with both feet).  Swimming has really helped because he wants to jump off the edge like the other kids and the teachers stand back pretty far waiting for him to jump.  He has done a fairly good version of jumping for a couple of weeks now, at least in the pool.  It should transfer to ground level soon.
• He rocks at the playground!  He can climb up and slide down without assistance.  I can sit on a bench off to the side and almost relax.  I still watch rather hawk-like, but the hovering has subsided.  He loves it!
• His OT skills are improving too.  He is learning to draw circles and follow a path (like from one point to another) staying in the lines on a page.  He does so well, and he works hard.  It helps that most of his sessions are early enough that he is not exhausted from his early wakings.
• Potty training:  Yuck!  He does well if I do well.  If I don't, he doesn't.  He doesn't really care about it and I am am not sure how to make him care.  I have tried all his favorite things (like TV) and after a while he stops caring about them.  I gathered some new ammunition from the Christian bookstore (CDs, stickers, toys, a stuffed Larry Boy doll) and we're trying again.  I lose focus myself, so I can see how he does too.  It really stinks.  I still have a dream that someday, he'll be diaper-free!
• Sleeping almost requires its own entry because of how much of our lives it consumes.  Not doing it, but trying to get little boys to do it, pondering how to improve it, stressing because of the lack of it, and brain-storming solutions to it.  Nothing much better here, but I think maybe my attitude toward it is better.  I am not running to their room 15 times from 5 am to 6:30 am to get them back to bed.  I let them do as they will (within reason...), and put them to bed at 7 pm.  Or earlier.  Not kidding.  I am enjoying the quiet evenings (I get to "nest"!)  And I am trusting God for an answer.  God knows what it is and I ask that he opens my eyes and shows me the answer at the right time.  I can say it much easier than do it.
• He knows so much.  He tells me all sorts of things that I don't understand, but I am getting more of it every day.  He knows so many songs and games and he wants to be involved with everything.  He wants to go to Travis' soccer games, go for walks (he can say "walk" and "park"), and make phone calls to Pop or Me-Me or Nana.  He has an attitude and a preference.  And that is getting tough!  But humorous and entertaining too.
• He is very sweet.  Whenever he hurts himself (often) he needs to kiss himself to make it better.  He gives hugs when people are sad and he pats and rubs their back as he hugs.  So compassionate!

That's about all I can think of right now.  He is such a doll and I love being with him (and Travis too!)  So glad their mine, at least for a little while!

Easter

Easter Sunday was lots of fun.  And an early morning.  We went to sunrise service at 6:45 am.  (Don't worry, we were awake for a long time before that.  It wasn't a stretch.)  It was a beautiful morning, singing and praising our risen Savior.  We had a delicious breakfast together with our church family and later we had Pop and Me-Me over to our house for lunch.

Justin did some serenading.

Pop and Me-Me brought Easter baskets for the boys.  Including big chocolate bunnies.  Those lasted about 20 minutes!  Have I mentioned Justin is a chocoholic?

Happy Easter!

Did you know that once you eat chocolate you taste like chocolate?  At least Justin seems to think so!

Easter Egg Hunt

We went to an Easter egg hunt at our church on Saturday.  It was the first one I have been able to attend in a few years since I usually work on the weekend.  I was excited when I figured out I would be able to go.  The boys had a good time playing in the bounce houses and gathering their eggs.

Then it was time to check out what was IN the eggs!  Justin can definitely open them up.  He just isn't a big candy fan.  Chocolate is his fave.  Fortunately, Travis is not very picky!

The boys did some playing and Justin really wanted to get up the climbing wall to slide down the other side.  With so many kids he could not get his balance and the steps were too far apart for him.  Travis tried to help but it was too high for him.    Randy finally went in and helped Justin get to the top.  It was a great big brother moment!

CPAP Frustration

So a lot has been happening in our sleep world.  Let me catch you up a little:  We had our sleep study, got the results, and I wrote a letter to both the main sleep center and the satellite center where we had the actual study.  By the end of the week we had messages from both places acknowledging receipt of the letter.  One said they would be following up and would get back to me, and the satellite center wanted me to return the call and answer a few questions.  So last week I had a long conversation with the director of the satellite center.  I wasn't sure what to expect, if he was going to listen or if he was going to dismiss my concerns or justify/defend his people and their procedures.  He started to listen and said he would follow up after he gathered more information, but he also discussed the results of the report and said that I just wasn't understanding things and he asked how I wanted to continue based on the report and suggested that I speak with our sleep doctor to get some more answers.  He also suggested that I go back to our pediatrician because she is supposed to be helping and treating this problem too.  He also said that he would call our sleep doctor and have her call me back to answer more questions.

Then I got several calls about scheduling another study to titrate the CPAP, which is what we had decided in the last meeting with the doctor about the results of the study.  The scheduler was almost humorous in her explanation of what the study would involve because that was one of my chief complaints.  (All the phone calls and no clarification about the purpose of the study.)  She made certain I understood what they would be doing during the night.  So we have another study set for May, and we are on the cancellation list for an earlier appointment.

THEN I started getting calls from the doctor.  I get the feeling that someone doesn't want to talk with me when they only call our home phone number.  We are so rarely home and the time we are home is usually when their offices are closed (lunch time and after hours).  So the doctor and I played phone tag for three days until she finally called the cell, even though every message I left included my cell phone number...  So our discussion.  Here's the highlights:  The DME reports mean nothing.  The data they gather is not regarded as useful because it is not an actual sleep study.  The machine can only guess at what is causing a sleep disruption and mainly it cannot differentiate between central apnea and obstructive sleep apnea.  Central apnea is not treated with CPAP and since that appears (according to the study) to account for more of the occurrences of apnea, CPAP is not indicated as needed.  There is a recommendation to consider an evaluation for the causes of the central apnea. That was never addressed in our visit or in the phone call.   My problem is that nothing has changed since the office visit, but the doctor's response has.  She spoke with another doctor who told her to disregard this report.  She didn't know to do this in our visit, but after being told by a superior, now she does.  Now the story is that the DME reports are only used for compliance.  And yes, we are complying with orders to wear the CPAP.

Next I asked about other sleep issues.  What can a sleep study diagnose?  Her answer based on what they monitor at this sleep clinic is as follows:  sleep walking, sleep talking, restless legs, snoring, apnea, brain disorders while sleeping and cardiac problems (mostly caused by breathing/apnea issues).  Seven things, and maybe some derivations of those things.  I could have ruled out the first four without a study.  That leaves only three things.  If the study rules out those three, and Justin is still tired and cranky during the day, what are our options?   Go somewhere else.  This sleep clinic only helps with issues that can be diagnosed on a sleep study.  There is nothing else.  Not that there are not any other issues, but the sleep center does not deal with those issues.  Our pediatrician is supposed to help with that.  We are going back to her for Justin's 4-year appointment in a couple of weeks so that should give me time to research more and find other options.

And the wakings?  They are actually arousals, which are changes in the levels of sleep to a higher level.   There are three levels of sleep, REM being the deepest level.  So an arousal is switching from REM to level 2, level 2 to level 1, or level 1 to awake (I think).  And I knew we all switch levels as we sleep, but I didn't know they are called "arousals".  So while Justin had more than the expected number per hour, it was only slightly higher, and not enough to warrant any treatment.


Then I got a what now.  She wants to cancel our appointment and basically dismiss us from care since the sleep study showed nothing she can treat.   I am hesitant to give up an appointment I worked so hard to get when she keeps changing her story.  My decision should be based on her information and that keeps changing.  She has flip flopped on several issues.  I don't feel like I can make a solid, informed decision on such flimsy advice.  She recommended we try some time without CPAP so that's what we are doing now.  And it's not good for me.  The nights are better, but the mornings are ridiculously early.  Like the latest is 5:30 am.  Some are before 5 am.  Both boys are hitting and poorly behaved and Justin is exhasted by 9 am, which doesn't give me any time to do anything.

Do you ever worry about what lesson you are supposed to be learning in a certain situation?  Like what if you aren't learning it?  Or what is it preparing you for that's more difficult in the future?  In my rare moments of a clarity I worry about that.  I am so crazy and scattered that my mind can conceive of some pretty wild scenarios.  I feel lost and confused and completely inadequate.  Why cannot my children get enough sleep?   How can I be such a failure?  I have had a couple of meltdowns over this issue, encouraging some of my friends who believe me to be invulnerable.  :)  (Not the case for sure!) We have hit a wall and time is short.  I am willing to hear suggestions and new ideas.  I have to brainstorm all over again.  Some kind of doctor who can help with sleep problems who is not a sleep doctor.  It's going to take some time.  And that frustrates me too...

Praying

One of the things I wanted to work on this year with my boys was teaching them more about prayer.  I want them to know the power that is in prayer and the availability of God through prayer.  So we made these prayer boards.  Mostly they are the same, but Justin's and Travis' are a little different (I took pictures of each of their individual Bible classes at church and I let them cut out whatever pictures from the internet they wanted).  The left side has the four parts of prayer (praise, confess sins, thank, and ask) and then the rest of the board is covered with pictures of different things they can include in their prayers.  Some are photos (family, friends, their books and toys, our church) and some I just printed off the internet (animals, food, maps of the world, kids from other parts of the world).  There is a ton of other things you could include, and I left space from more to be added.

So Justin is really good at praying with his board and it helps him remember things other than just "mama and dada" although those are still tops on the list.  You can recognize a few things from his prayer, and if your name happens to be Bob, you get lots of prayers (my uncle, an elder from our church, one of his friends).  It is really very cute to watch.  He kind of performed a little since he saw me taping him, but he is adorable!

Justin's board

Travis' board

Justin is Four!

Justin had another birthday this past week.  He just keeps getting bigger!  We had a little Veggie Tales party for him with a few friends.  He loves Larry Boy!  We have been working on saying "four" and doing four fingers for a while so now Justin is really good at it.  He does it with both hands, but fortunately there is no risk of confusing him with being eight!

He's very obedient when we say we're going to take a picture, but the face we get isn't always the best.  That's what we were trying to avoid with the family pictures...

He didn't wait for us to finish singing before he blew out his candles.  I think this may be the first birthday he has been able to blow out his candle, so we didn't say anything!

Happy Birthday Justin!

Family Pictures

We went for family pictures since it was Justin's birthday (can you believe he's 4???)  Our favorite photographer (at the place we go for pics, not to offend any of our amazing photographer friends!) got a new job between when I made the appointment and when we went for pictures, so I was a little disappointed.  The pictures didn't turn out as good as I would have hoped, but we still got a few good ones.  It's hard not to get any good pictures of Travis, and it's hard to get anything good of Justin without his squinty cheese face.  Can I just say, I (heart) polo shirts.  Don't my boys look handsome??