Justin's Words

This week at therapy Miss Sarah video taped Justin doing some of his words for me.  Every time she comes out aferwards and tries to get his to say something for me, it's never as good as what he does in the room with her.  So she tried to get him on her phone saying some of the words.  So forgive the quality of the video, she was trying to cue him and tape him so he's not always in the center of the frame.  I sat in a session this week since I had my mom in town to stay with Travis (and do school, how cool!)  Justin does so much better in the room with her, so I need to get better at some of the cues she uses so I can do them more naturally at home.  I find myself running to the wall where we have them all put up so I can remember what they are.  When she cues him he gets it almost every time!  It's so awesome.  And Miss Sarah is awesome too!

This videos shows words: boo, bee, bye, bow and pay.

This is words: pea, pie, moo, me, my, mow, weigh, we, "y", and whoa.  (I think...)

This is words:  two, tea (tasty!), tie, toe (he points to her toe), day, "d", dough (mama does this...), and neigh.  (Check out that yawn.  Still struggling with sleep, this was at 9 am!)

So, what do you think??  Making progress, right??  And he says "thank you" and "book" very, very clearly that anyone can understand.  Don't you just love how his lips just curl around those words?  Adorable!

Endocrine Update: The Fastest Doctor Appointment EVER!

As if last week's trip wasn't enough, we went back to the medical center for another endocrine appointment this week.  School has been tough with all that's been going on (Travis was so excited that he didn't have to have school the day we spent down with all Justin's sleep appointments, until I told him we would just have school on Saturday!) so I packed up everything to take with us to the doctor while we waited.

We got to the hospital and checked in and then went to the bathroom.  (I am still working on potty training, with or without Justin's help!)  After that, it was back to wait.   Each floor of the clinical building where we have our appointments have different set-ups to entertain the kids.  This one is a favorite, with an incredibly fast slide and an area with slanted walls the kids can try to climb.  So Travis wanted to play a little before we started working on school.  Well, he got about one slide before our handy dandy pager went off and it was our turn.

We went to check-in for weigh-in and height check and then into the room where the doctor was waiting for us.  No kidding!  She was all ready with her set of questions and then her tape measure to record Justin's growth.  She measures Justin's head, and that along with his height and wight are recorded to ensure that Justin is keeping pace and growing.  (Not growing would indicate a thyroid problem.)  We went to the lab for blood work last week and she had the results all ready for us to examine.  Justin's TSH levels are still high (out of range) but not as high as before.  His T3 and T4 levels are still in range, so for now, still no treatment.  She was very pleased with Justin's energy level and his awareness of what was going on with the doctor.  He came over and "told" her that she needed to measure his head, and for some reason, he wanted his arm measured too (which she obliged him).   That earned him good marks in her book and reconfirmed that he doesn't need thyroid treatment right now.

About the time we were finished the nurse (who is supposed to come in before the doctor and ask all the background questions) finally showed up and chastised the doctor for being too quick.  When she left, the doctor whispered to me, "I don't like this new procedure we have with the nurses.  I like to ask all my own questions.  So I have to stay ahead of them!"  Too funny!

We were out of there in less than 45 minutes!  I carted all the school books around for nothing because that's about how much school we got done: nothing!  But we did have a great appointment for Justin and another six months free and clear!  Whoo hoo!

Back to the Sleep Clinic

It was finally time for our return trip to the sleep clinic.  Randy was able to go with us since it was his Friday off.  I cannot tell you how excited he was to be able to get up early and drive down to the medical center in morning traffic to within a block of his office.  What a treat on your day off!  Travis was excited to have Randy with us because he has been playing some games on the ipad and he needed Randy to help him get to the next level.  I always talk to the doctor and don't help him!

The appointment did not start out well because the doctor was flustered.  It was not supposed to be a sleep clinic day and her schedulers had put us in on this day in error.  And the DME had not sent the reports they were supposed to send about Justin's CPAP usage.  (Grrr!)  And since they put a modem on our CPAP, somehow the first nurse we saw assumed that meant there was no data card to read.  It took probably 45 minutes for everyone to settle down, get the report, figure out that we have a data card and get it read.  Whew!  Then the real discussion began.  The doctor started listening, Justin demonstrated the masks, and we shared our dramatic descriptions of wind storms and whistling noises coming from the various assortment of masks.

The doctor finally concurred with our analysis.  Based on the report, Justin is having just as many OSA episodes per hour before the CPAP as with the CPAP now.  So something needs to be adjusted.  She agrees that the masks we have are not working and she is willing to try some other options.  She agreed to send us back up to the sleep lab for another mask fitting and we are going to schedule another sleep study just in case we cannot correct the problem before then.  (They are scheduling studies now for August!)  The sleep lab could not see us in the morning, so we scheduled for after lunch.  That was actually okay because we had planned a little side trip to the zoo since we were close.

It has been a while since we have been to the zoo.  A lot has changed, but we didn't have a lot of time to see it all since we had to get back to the sleep lab.  Some things never change though:  Somehow, the play area is always the hardest place to leave, and Travis still doesn't like touching animals. 

Then it was back to the hospital and back to work.

We had to tell our whole story again and the nurse who works at the sleep lab was so good to us.  She brought out a bunch of different masks and she sang to Justin while she tried to fit one of them on him.  This was getting to be a challenge because it was pushing his nap time.  He let her put it on without any big trauma and it was so quiet and it fit so well!  The only big drawback (there's always something) was that the head gear that goes with it is huge.  It was pulled as snugly as it could be and it still was too large.  It needs to be cut down and resewn to make it fit properly, but I think it has potential.

The "nugget" for this trip to the doctor was all about this nurse.  She is like a sleep guru.  She came from another hospital where she set up all sorts of protocol and programs to help improve CPAP usage.  Now she's on the same mission at our hospital.  The hardest transition is that now she is working with kids.  So instead of just being able to ask the person what is the problem, it's all about statistics.  The top three reasons people don't use the CPAP machines are:  1. poor fitting masks  2.  nose issues  3.  Lack of education/understanding why the mask is necessary.

So we are starting with number one:  the mask.  We are going to try to make the mask fit as well as possible and then when we restudy we can use this mask and get hard data to see if this works.  She also recommended going ahead and working on number two:  the nose.  Justin may be having a tough time adjusting to the air blowing in his nose and it may be irritating him even though we cannot see it.  There are preventative nasal sprays that coat the inside of the nose which would make the air more tolerable.  This was the first time I have heard of this so this was big news.  And number three we already understand so we're good with that.  She recommended trying to make Justin understand that it is good to use the mask and that it makes mommy and daddy happy when he uses it.  Randy and I listened and nodded, but then both agreed we are at a loss for making Justin do anything he doesn't want to do (case in point, potty training).  If it's something we can strong-arm him into doing, we're okay, but if any of it requires his initiative, we're stumped.

I went home and made bar covers for his crib so when the hose moves through it it doesn't rub and make a loud noise.  I also plan to make a cover for the hose to insulate it to make sure the warm air going through it stays warm (and thus irritates his nose less) and also to make it rub less on the crib.  My mom is coming this week and I am waiting to cut apart the mask head gear until she gets here.  She does much better at that type of stuff than I do.  Although I did impress myself making the bar covers for the crib.  They ended up being nice and snug and perfect-fitting.  Randy said even he was shocked since they looked too big at first.  Measure twice, cut once!  Okay, so I did make one a little too small, but the width of the velcro covers my error.  (I was hurrying, I admit it...)

So far, Justin is not impressed with the small changes.  He was still up 8 times that night after the doctor.  (And not to be outdone, Travis woke once.)   He did fall out of bed once, so I will let that one slide.  But mostly it's just for me to come in and lay him back down and tell him to go back to sleep.  But I hope we can get this new mask to work and start making some big improvements.

P.S. Randy was able to get Travis to the next level of his game, so it was a successful trip all around!

More CPAP

Last week the DME company came with their "bucket-o-masks" to try and find a better mask to fit Justin and help him sleep better.  They brought the one we had ordered, plus several others, including the one I found on-line that seemed like it would fit better.  We tried them on a very reluctant Justin, who cried through the whole process.  The one super sweet part was Travis consoling Justin.  He hears me tell Justin all the time that "it's going to be okay" and "don't worry, I will be right here" and Travis came up with his own line, while holding Justin's face in his hands, "Justin, don't worry, I will always take care of you."  I melted right there in the middle of the kitchen, with Justin sniffling and the DME person offering more choices of masks.  That was a good moment.

So we decided on a new mask and the DME would send it out the next day so we would get it in a couple of days.  Not a problem, since we were doing okay with what we had for the time being.  The new mask allows a lot more space between Justin's upper lip and eyes so it's not so big on his face.  Plus I think that I can sew a piece of velcro on the little cap (it so looks like a yarmulke!) so the tube goes over his head.

The other interesting information was contained in the sleep report that the DME person brought out with her.  It recorded all kinds of interesting information about his breathing and mask leaks and yeah, OSA incidents.  Absolutely astounding!  Justin had almost 100 incidents of OSA that night, with close to half of them occurring during a 45 min. window.  "How is our child not dead?" Randy asks when I show him the report.  Okay, so maybe not that serious, but still, Justin is not getting good sleep.  Not by a long shot.  We have a lot of work ahead of us still.

We got the new mask and tried it the first night.  It lasted about 4 hours and after I had spent more time awake than asleep, I switched back to the old mask.  I tried the new mask again the second night, and it lasted about an hour.  I didn't even try after that.  This is where the communication barrier is enormous.  I cannot understand what it is about the mask that he doesn't like.  I called the DME to see what the report showed to see if that would lend any insight and she asked what he doesn't like.  Oh, if I only knew!!  It makes me so frustrated because I want to understand and I can't.  And when he's tired and upset with the mask, he just wants me to take it off and then he lays back down and goes to sleep.

I am scouring the internet for feedback on different masks and problem-solving websites to help me figure this out, but it seems like it's all personal preference.  Everyone has the thing that makes the mask work best for them, and it's just a matter of finding that out about Justin.  That's comforting and frustrating.

Justin has taken to crawling back into bed around mid-morning.  He goes back in his room and climbs into bed and lays there, not really sleeping but just resting.  It makes me so sad that when my child is quiet, and mother instincts start telling me go look for him, I find him in bed, not causing a lick of trouble.  I am glad for no trouble, but I wish he had energy to do something!

We're going to the doctor this week, so we're hoping we can get some answers and make some plans for what to do next.  Please pray for quick resolution.  Our goal is to move the rooms around to get ready for the baby's arrival and we need Justin to be sleeping well to make the move easier.  And if we need more sleep studies, we need to do it before too long.  We both won't fit in the beds in the hospital after too much longer!

Thank you for ALL your prayers!  We are so comforted and encouraged by you all!

Cowboy Breakfast

So just what does a pistol-packing gun-slinger eat for breakfast?

Bitter coffee and biscuits as hard as rocks.

Or lukewarm hot chocolate and hot fluffy biscuits (with jam).

That sounds much better, I think!

Travis Helped

I think Travis might mave helped Beyonce name her new daughter:

Blue Ivy

Yep, it sounds like him!

CPAP Update

It's been a few weeks since I have said what's going on with Justin and his CPAP, so I wanted to make sure you knew that things are going much better!!

After my last ranting post, my awesome aunt took pity on me and she called to offer some suggestions.  Not only is she a nurse, but she also knows a lot about insurance and DMEs (durable medical equipment companies) and she is a long time CPAP user herself!  A wealth of information right there!  She explained to me a lot about the different features of the CPAP machines and masks, plus what other things are the most influential and what I needed to make sure to focus on changing and adapting to make it better for Justin.  When we finished talking I felt much better about what I needed to do and hopeful about working this all through.

So I ordered Justin a new pillow and we just got it this week.  It is firmer so it doesn't push the mask off his face as easily.  My aunt said that having the tube go over his head was a much better option than the tube that swivels around the front.  I tried taping the one we have over his head, but it sticks out too much and by the time it can reach his head, there is nothing to tape it to except well, his head.  I don't think I can do that.  :)


I was also able to talk with another friend who uses a CPAP machine and get his insight.  His machine is much different than Justin's so it was good to see something in person rather than simply pictures on line.  Looking at pictures on line and talking with my aunt helped me to understand what our options are so I can push for the right things for Justin.

I didn't even realize that there are so many different types of actual CPAP machines!  And some of them have really cool features:  The flow rate adjusts automatically based on how it senses you are breathing, they have ramp features so the flow starts out low and then increases to what is prescribed by the doctor, the machine senses when the person is breathing out and it decreases the force of the flow so it's not fighting the exhalation.  Very cool!

Before I could even call the DME and make an appointment to see all their machines, we got a visit from them to check our data card to monitor compliance.  (They check to make sure we are using the machine and how it is going for the patient.  They are checking both for the doctor and insurance.)  They installed a modem so they can follow all of Justin's readings in real-time.

By the time the holidays were over and I felt mostly recovered from my bout of illness, I was finally prepared to face the DME.  I called and asked for an appointment to see all their equipment and it turns out I don't get any options.  The doctor prescribed the specific machine we are using (which is "top of the line" according to the DME.  But they only carry one brand.  Is that still "top of the line"?)  But she did agree to try some different masks.  (That is still coming.)  The "nugget" that I gleaned from this discussion is that not only can they track usage with the modem, but it's also like a mini sleep study.  They can tell if he's snoring or his mask is leaking or if he's he's having any apnea.  She told me that they can tell that Justin is still having OSA episodes while he sleeps!!!  Do you think that might be something I want to know???  I have been fretting about whether this is the right therapy because I just don't see the level of improvement I was hoping for from the machine.  Well, if he's still having apnea, that might be part of the problem!!

Okay, deep breath.  I was very polite on the phone, truly I was, but I am really, really glad I called.  That was the lightbulb I needed.  And, I even got a little encouragement:  It's very impressive that Justin wears his mask for 8-10 hours a night.  Every night.  That is much more than any other DME patients Justin's age.  That makes me feel slightly successful, even though my goal is not usage hours but improved daytime alertness.  We go back to the doctor in a couple of weeks and we can discuss what to do next given this new information.  For now, we'll keep doing what we're doing and try to figure out any other improvements we can make.