Enter Sandman

Can't believe I haven't been on this topic for a while, but now, here we go again.... SLEEP.  

Oh,, glorious SLEEP!  How we miss you.

You go through life, hugging your pillow each night... dreaming,  waking to an alarm clock or birds chirping.  Life is good.  Sleep is good.
I remember days when I would say things like, " I think I slept too much." or "I'm sleeping in tomorrow".
Those days are long gone.

Roa Joseph is a HORRIBLE sleeper.  We do the melatonin, warm bath, epsom salts, massage.  We've done early bedtimes, later bedtimes.  We've done memory foam, more nightlight, less nightlight, fan for background noise.  We do warmer bedroom, cooler bedroom.

Not only can Roa not sleep through the night, he can NOT get back to sleep after waking.  Most nights he is up for 1 to 2 hours at a time.

Bless Bryan's heart, he is getting up with Roa and handling most of the night time wakings now that I am not nursing and pregnant.  Not that I can sleep with the crying and fussing, but at least I can stay in bed until Bryan needs a break.
Last night Roa was up after 11:00pm  3 times.  He THEN  woke... for the day.. at 3:00 AM!! 
We CANNOT function this way!!
 Roa on the other hand, is cranky, but ready to play with the dogs and have some milk and crackers.  He even had his PT session wth Mary this morning at 8:15 and worked his little tail off!  
How can he function on so little sleep????

Napping is going better during the day, but he is EXHAUSTED by that time.... Bryan and I, however, are exhausted all day.

Mr. Sandman,  Please Please Please?,,,,,,,,

Ode to Magic Pat

Roa had a visit this morning from his ECSE teacher, Pat.  Usually, we see Pat at ECFE class on Wednesdays, but since we are not making it to class lately due to Roa's morning nap schedule, Pat visited us.

Pat is retiring in a few weeks and it is a sad thing.  She is an amazing teacher and so good with Roa.  Bryan and I have referred to her as "Magic Pat" since our time with her began.  As some of you remember... Roa was a CRANKY baby.  Reflux, poor sleep, muscle tone issues, all lead to ALOT of fussing and crying ALL DAY LONG!!  When we had our scheduled visit with Pat, I always breathed a sigh of relief to know that for that one hour, Roa was going to be mesmerized and completely happy.  Pat just has that way about her.  Singing songs, reading books, and toting that magical bag of stuff!

Not only does Roa greatly benefit from a good play session with Magic Pat, but I also love watching her pull out the simplest, put-to-gether activities-- Brightly colored containers with crinkly pom pom balls, cute little boxes of pictures to cue favorite songs!  I always think,  "I gotta get my teacher hat back on  today and get creative like Pat!" 

In my years of teaching and doing home visits, I visited so many homes where the toddlers just didn't have any toys or activities to stimulate development.  Either the parents were to preoccupied spending money on other things to provide appropriate toys or in some cases the families were financially unable to purchase and materials.
The beauty of teachers like Pat is that she shows parents how to make a container with a cat toy EXCITING to a child.  Anything around the house can be a learning aid, given a friendly, smiling adult to introduce it!

So,  I am off to my arts and crafts cupboard to see what Roa and I can explore today.....

Thanks, Pat for all you do!!!

Gillette Visit Update

We had our visit to Dr. Gormley at Gillette on Monday.  I realized I haven't shared the report.  So, in interested, here ya go...

Overall the visit was good.  It was  our Botox follow-up to talk about the affects.  We informed the doctor that it was a bit too much this time as Roa was a limp noodle for the first two weeks with completely loose legs and wide open hands.  Right now, Roa is at the "good" amount of botox and is able to move in his gait trainer and grab objects again.  Dr. Gormley said that it is really just trial and error with each injection and that in time, Roa's body will accept the botox differently as it learns to process it.  Next time in 4-6 months, we plan on not doing as much in his arms and doing a bit more in his adductors for sitting with more ease.
We talked again briefly about the option for medications.  Dr. Gormley wasn't too fired up about starting Roa on anything new as he seems to be doing well with simply the botox.  More good news.  He said some day, we may look into the option of Phenol to help with tone reduction when Roa is older.

A few of Roa's therapists would like to see him give another trial with the power wheelchair this summer after he turns 2.  Bryan and I have mixed emotions about this as Roa really wants to walk.  We flat out asked the doctor for his opinion on this matter.  We were VERY pleased with he said that usually he is a pusher of powerchairs to give kids mobility, but in Roa's case, he feels that Roa will be a walker and we should  continue down the road with the gait trainer. NO powerchair.  YEAH!!    He did say that someday when Roa is older, a powerchair may be a nice option for distances.

Lastly, we chatted briefly with the doctor about the option of saving our baby-to-be's cord blood to use the stem cells to aid with Roa's development.  This is a new area of research occuring around the world with spinal cord and brain based injuries.  Little developments have happened as of yet...  No miracles, but small improvements in some of the children who have received the treatment.  In the US, only Duke University is performing the procedure.
The doctor said, it is so new, he cannot give a recommendation for it, but that many of his patient's are looking into this option.  He agreed with us that it may be worth looking into for who knows what the future of science holds.

It is frustrating not know for sure what we can do to help our Roa, but if there is a chance.... we will look into taking it!

I Spy, With My Little Eye....

Yesterday, 4:00 pm.... 
Roa and I were playing with rice in his sensory table in our front yard.  Roa kept looking up into the sky.  Being the trained EC teacher that I am... always looking for the language-rich experience... I said, "Wow, Roa!  I see a birds in the sky!  Look at the clouds., etc.." 
Roa looked at me and said, "M-O-O-N!"
I glanced up and sure enough, there was a tiny, barely visible sliver of the moon showing in the bright spring sky.

He has said moon before in mimic of us, but never completely on his own agenda.
Pure genious, I tell you!  Not that I am biased! :)

What to do on a Rainy Day....

A week of rain.  Could it be more depressing?

  Roa and I have been making the most of it indoors this week.  I am pulling out my bag o' tricks from my teaching years and we are being creative.  Bubbles, shaving cream, finger paints, balloons, clothes basket rides... I even put socks on our cat, Beast, which really brought on the rolls of laughter from the boy!  Beast is so bored inside, she didn't even mind the blue and green striped numbers.

Since 4 months of age, Roa has loved tenting it.  Blanket tents, real tents, blankets over the crib..... his own private little world.  I add balloons on strings pinned and hanging down, a few flashlights and light up toys, and it is hours of fun.  Giggling and kicking from under the fabric form.  Life is good, even if it rains.

And now, back to your scheduled program....

Yep, I'm back on the blog!  Not only has sitting at the computer been difficult during this tummy-churning pregnancy, but then our computer got a virus and was down for a week.
 So, here is the update of the Thayer's life for this first week of May...

Crazy cold here in Minnesota.  They predicted snow, believe it or not, but it hasn't happened.  Thank goodness we haven't planted our garden yet.... plants are safe in the basement.  Darn midwest weather!

No miracles in the life of Rojo, I have to say.   At 22 months now, we are still working on independent movement, trunk strength, and balance.  We have continued with all the therapies- PT, OT, craniosacral, Sp/Lang., ABM, Conductive Ed.  We have backed off on the Hyperbarics, but hope to begin again soon. 
Roa is accepting movement with less frustration, but still doesn't roll to his tummy, sit, or scoot on his own. We are trying to stay positive and are hopeful. 

Roa's therapists are all happy about his increased strength gains as this last session of botox wears down. May 17th, we visit Gillette again to let Dr. Gormely know how the botox worked.  Definitely needs to be altered for next time as he was a limp noodle for two weeks.

Roa continues to enjoy his gait trainer outside.  We have altered it to support him in the hips instead of under the arms which is a great show of his increased strength.

The big news.... drum roll please......  Roa has been officially weaned and is eating solids like a champ!  He is eating EVERYTHING in front of him and is so happy to try all kinds of "big people" food!   YEAH!!!
We are very happy that it all went so smoothly.  It happened just like many nursing mother's say,... one day, he bit me and we looked at each other and I said, "OK, you're done."
I am missing the closeness of nursing.  Missing my little baby Rojo snuggle time, but he is growing up after all.  And soon,  Baby T-2 will be nursing away!

Glad to be back on the blog!  Can't wait to catch up with all my blogger pals!