My Best Gift

From my loving Husband

Unpredictable

Life is very unpredictable.  One minute you are driving in your car. The next, you are inside your smashed car talking to rescue workers, praying that the baby inside you is still alive.  Dramatic, I know some of you might say, but it is true. It was what I lived.  It made me think about life and how I live it.

I think about that fateful morning pretty much every day.  I think about the "what ifs".  If I didn't crash, would Roa not have cerebral palsy?  If  I would have stayed home that morning instead of driving to work, nauseated, constipated, and light-headed, would my life be different now?  If I had not passed out while driving and made it to the side of the road safely, would I be a different kind of mother to a different kind of little boy?

Bryan tells me not to think about it. I am not to blame.  The doctors tell me there is no way of know if the car accident was the cause of Roa's issues. But,.. I still think about it- every day.

I don't want to live a life of "what ifs".  I want to surround myself with positive people and live life to its fullest. I want for Roa ALL that is possible including freedom of movement WITHOUT support by another, the ability to SPEAK his mind, the love of a family that is UNCONDITIONAL and WITHOUT JUDGEMENT.

As I sit here, my mother is in the hospital at Mayo Clinic/St. Mary's Hospital.  She has a drain in her head relieving her of pressure from built-up fluid.  This very second, she is returning to her room after her second angiogram which  is determining why there is bleeding on her brain. 
Before her severe headache two weekends ago, she officially retired from her job and was ready to enjoy life. Now, she questions her future.
I had a good talk with my mom yesterday about life and how we have choices about how we live it.  We choose what is important, what our focus is, how we treat others. 
But life is unpredictable and sometimes you have to just deal with the curve balls thrown at you.

Holiday Wishes

While Roa is nestled all snug in his bed...
I wanted to send a message to all my blogger friends,
Merry Christmas and Happiest of Holidays to you all!
We are pretty much snowed in here in Minnesota. Boy, did we get a white Christmas!
Roa, Max, Molly, and I played in the fluffy white stuff this morning and now, Roa is tuckered out!  

I'm drinking my coffee and waiting for Bryan to get home from his half day of work.  I cannot wait to see Roa's face when he opens his gifts tomorrow!  The best one from good ole Santa, you ask?  A little vaccuum of his own!  Here he is helping me with holiday cleaning.  Momma's job is gonna get a little easier! 

No more AFOs!

We are happy to report that, per Doctor Gormley, Roa no longer had AFOs for feet!  Today, Ellen and I went to Winkley Orthotics in Woodbury to have Jason, the Orthotist, trim them down to UCBs! UCBs are basically just a shoe insert for his foot to keep it straight and keep his toes from curling under due to muscle tone.   YIPPEE! 

Roa is beginning to tolerate a little more time today in the gait trainer.  He has absolute NO interest in being in the wheelchair.  We are thinking we will give it a try for the trial period, but Roa is going to be a walker-type or pushed in a stroller.  Being that powerchairs are approximately $6,000, we will totally work for the walker!

Toddler Alert

Today was a day I will call, "Special Delivery Day".

At 10:15am the Reliable Medical Sales Rep. dropped off the powerchair.  At 10:17, the mailman brought a early Christmas present from Grandma Patty for Roa.  At 12:00pm, Mary, PT, brought a gait trainer for Roa to try.  And at 1:15, FedEx brought some Santa gifts I ordered!  The doorbell still rings in my head!  Ding Dong..

Roa responded to the wheelchair with curiosity.  I put him in it and he got a bit angry with all the adjustments of straps and belts I had to do.  Once I should him that it moved, he cheered up.  The wheelchair is powered by a joystick and Roa was a bit frustrated with trying to move it forward.  When operating it independently, he would kinda just go in a circle...backwards.  This got old and he fussed to get down.

We then open Grandma Patty's present of snowpants and snowboots.  The boots won the popularity contest over the wheelchair in seconds.  He wanted them on... NOW!  We then spent the rest of the time until Mary arrived walking around the house with Roa laughing with joy at his new black boots! 
What can I say? The kid's a walker!

The gait trainer Mary brought is not exactly the right size for Roa, but we will try it until the one ordered from Reliable Medical arrives.  Roa didn't get moving in it until I placed a ball in front of him. That set him off, ...kicking as he went!  He move directly into the Christmas tree and squealed with delight!  As I moved furniture around and out of the way, I thought to myself,  Finally, my toddler is getting into things and causing trouble!  I LOVE IT!

Positive Appointment!

We had such a good visit at Gillette with Doctor Gormley yesterday!  First of all, we didn't have to wait for a super long time as we usually do!  This is great as Roa is not very patient, especially in the little exam. room!  Also, they remembered us and didn't ask all the same, routine questions about Roa as they have repeated in the past!  Nice!
Dr. Gormley is very personable and easy to talk to.  He doesn't act rushed and actually listens to all our questions with interest.  That is such a blessing as other specialists and the wide variety of pediatricians we have tried look at me coming in with my folder, calendar, and lists of questions/concerns and have that "Oh, no...here we go...too informed and involved mom alert!" look on their face.

Dr. Gormley said that the botox is working beautifully for Roa.  He was pleased with his muscle tone in his legs and liked his walking without scissoring skill.  We are scheduled in March for his next round of botox that will be similar to this last, but will include his forearms.  The doc said that the gait trainer is a great idea now and that Roa looks great walking with support.  The powerchair is something to give a try, but he thinks that Roa is a bright kid who will master it and then may give us some grief if we make him try to move without it!  But, we said we would do the trial period, get the ball rolling for an order and possibly cancel it if Roa is moving easily with the gait trainer.

The gait trainer we are looking at is called the Rifton Pacer.I attached the picture to give you an idea of how he will move. It won't be available for trial for a few weeks as it needs to be special ordered for Rojo.
I also found a general pic of a power chair.   I called Reliable Medical yesterday and found that the chair is being delivered  TOMORROW!
 Merry Christmas, move the furniture, barricade the tree,.. Rojo will be on the go this holiday!

Over the River and through the woods...off to Gillette!

Roa has his Botox follow-up appointment today at Gillette with Dr. Gormley.  At this appointment, we will discuss the affects of the Botox on Roa's motor skills and discuss any changes we have seen, any ideas for the next injections, and set up the next round of botox.  On average, children with CP will recieve injections every 3-6 months. We will see what the doctor suggests for Roa.
We have been pleased with the result of the botox in our guy.  It has helped him get better sleep by relaxing his muscles, it has helped him sit with more ease and grasp objects without them flying out of his hands.  Roa seems to be tighter on the right side than his left but keeps his left thumb in more than his right.  We will mention this to the doc to see if it alters the dosing pattern.  We will also talk to the doctor about the power chair, gait trainer, trunk support vest, and possible new AFOs ideas brought up by the therapists.

Roa has begun his second week of HBOT at home and is doing fairly well.  I know,... I continuely bring up teething, but WOW!  I can't believe the molars and canines that are moving into my boy's mouth!  It does seem to impact his adjustment to the pressurization of the chamber.  We have kept up with Benedryl and I have slowed the pressurization speed on the chamber as Bryan and Roa "go up/down". 
Positive effects after a week of HBOT-  Roa is once again babbling, "Go", and "baaa" and just making more sounds.  He is also wiggly and giggly when placed on the floor after treatment.
Negative effects-  Roa is once again waking 6-8 times in the night!!  URGGHHH!  However, we don't let him nurse every time (we have started a nursing schedule and stick to it!) and Bryan usually goes in and just repositions him.  Thankfully though, Roa is waking and babbling and laughing!  Not crying and screaming!   Guess we gotta take the good with the bad on this one!

Support

I finally got the time in a day to post a few videos of Rojo in action.  I hope you enjoy them as much as Bryan and I have!  We are very proud of our guy and his accomplishments, no matter how small.  Thanks to those of you who have emailed, called, or posted messages about your delight in the videos!  We appreciate it more than you know.

Bryan and I chat in length, usual on our walk, about support and how it comes to you, sometimes from unexpected places.   It is amazing how having a child who is developing on a different timeline  makes some people shy away from communicating with  you about your life.  Some people seem afraid to ask questions or seem nervous to interact with Roa. Some want to know all the details.  When we are jumping for joy over the tiny new change in his life, some people think, "What's the big deal?"  Some people know what a VERY BIG deal every little change Roa makes is.  Some don't get it. Some people whom you never dreamed would get it, DO, and reach out to you more than you could have dreamed! Some people you thought would be there for you, are not.  Some people call or email frequently with words of encouragement or offers to help in anyway they can.  Some people remember to ask about Bryan and I and how we are handling the challenge of  raising a child like Roa...that too is nice since "King Roa" occupies so much of our thoughts and actions-our lives seem to completely revolve around his needs.  Some only ask about Roa.  Some people truly don't want to get involved and, I think, that is their choice.

This holiday season, I think it is important to think about SUPPORT and what it means to you.  Are you supporting a worthy cause, helping someone who is down or in need this season?  Have you reached out to someone who might appreicate kind words or a simple chat? Have you made an attempt to make your friends and family know that they are important to you?

THAT is the spirit of Christmas.  That is giving of yourself to support others.

A big thanks to those of you who continue to support Roa in all his success, no matter how small.  Thank you to those who have been a shoulder to lean on when things get overwhelming.  We don't know what Roa's future looks like exactly, but we know we definitely have support in making it the best it can be.

Roa's Mealtime pout/ Dog therapy (Sept. 2009)

Roa in his stander (October 2009)

Roa in his walker (December 2009)

Trapped!

I woke up this morning to frost covering the windows as the street light shown through and I thought, it is the season of feeling trapped.  I said I gotta blog about this!
Lisa beat me to it.  I just read the positive post of Elijahland blog and realize I need to break out the love-o'-winter-feelings myself.  However, it is cold and I feel just that.... trapped.

Roa is still young enough at 17 months to not enjoy the cold wind in his face.  We tried the swing in the backyard last week as the flurries flew and the breeze nipped and he looked at me with the "Mom, are you crazy?!" look and indoors we went.

Today, as he walked me around the house, he moved over to the door and then looked up at me as if to say, "How long will this take?"
I totally feel his pain. There will be warmer days where we can try sledding, build a snowman, and take him on our nightly walk.  But,  right now, Roa, it's just you and me, kid.  Trapped.

Back in the saddle!

So Roa and Daddy had their very first home-based hyperbaric oxygen therapy session last night!  No one was too excited about it, I must say. Mom was a nervous wreck "in control" of the chamber, Dad was battling his sinus headache, and Roa continues to have teething woes, so the pressurization and depressurization was tough on his ears.  But, one hour of therapy down!   YEAH! 

After he got out, Roa was quite happy to be in Mom's arms.  However, it didn't take long for him to want to get down and move around.  The rest of the evening, Roa was WILD and giggly.  Babbling and laughing at the dogs and wiggling on his blanket ride.  The oxygen therapy impact already?  Could be!! 

I am, there for I walk.

Last night I had a dream that Roa was walking beside me.  It was such a sweet dream.  So very real.  I was walking our dogs and talking away to Roa as he laughed and listened... and WALKED next to me.

This morning as I lay awake in bed awaiting Roa's wake up, I thought about my wonderful dream.

I have been a faithful walker for over 15 years.  I gave jogging a try for a while, but due to back issues, went back to the power walk.  Walking daily helps me clear my head, motivate my actions in life, and keep my spirits up.  Before I met Bryan, I walked my dog, Tucker and found it the best time to think, pray, and just be.  Since Bryan has been in my life, he has joined my walk and we have had our most indepth talks on the move.  We bonded on those walks.  Bryan says walking is what made our relationship so strong. 
After having Roa, he joined the walk in his stroller or carrier.  We so look forward to our nightly walk that when winter hit last season, we sometimes battled over who would walk the dogs and who would stay home with baby Rojo.
This season, we are bundling Roa up and tucking him and his carrier into Daddy's jacket and off the whole family goes!  Crazy as it sounds, not only do our dogs walk with us, but our cat, Beast has tagged along on many occasions.
With walking being such a staple of the Thayer's existence, I cannot imagine Roa not walking.  Will he move along in his power wheelchair holding a dog leash?  Bryan will continue to carry him until he is too heavy to manage, but then what?  I will push him in his stroller for years to come, I assume.

 BUT, the Thayer's will keep walking!  And we will work with all our powers to help Roa walk.   And we will continue to pray each night as we fall into blissful dreaming of Roa walking on his own.....

Wheels for Roa

Our hyperbaric chamber took a little longer to get to us than we anticipated, but it will be here tomorrow afternoon!  We are very excited to set it up this coming weekend and begin oxygen therapy again.

Another new development in Roa's life is that his therapist, Andrea at Courage recommended we give a power wheelchair a try.  It was very emotional to consider this step in our lives.  Andrea stressed that this does not mean that she thinks Roa will not move on his own someday.  She STRONGLY feels that he will, but she said a power chair might give him a sense of independence, work on hand coordination, and just be a source of mobility for Roa.  We said we would give it a try for a couple weeks in our home. I got a call today from Reliable Medical and he is on a waiting list for a trial, but is should be 2-4 weeks!  Wow, our little guy in a wheelchair?  Life takes crazy turns.  Makes you REALLY think about how lucky we are to walk, crawl, run... move on our own.  

Tis the Season...

I hope everyone had a wonderful holiday weekend.  Now it is back to the work week as Roa and I enter another week of therapies!
We have not yet recieved our HBOT chamber, but after chatting with the girls at WI Hyperbarics, we know it is on the way.. shipped out Friday and should be here within a day or two.  We are very excited to begin oxygen therapy again in the comfort of our own home!

Now, on to the holiday talk...
Many people have been asking about gifts for Rojo.  We greatly appreciate your thoughtfulness in adding him to your Christmas list, but please, do not think that you have to purchase anything for him! 
Taking time to visit and play with him and talk with him is gift enough.  The Thayer's are not "stuff people" as I like to refer to it.  We don't need the latest hot toy or gadget that, I think, most Americans sadly focus their lives around. Christmas should be about family traditions, talking and getting to know each other, giving to people who are going without, and overall the birth of Jesus.   But,... I won't get on my soapbox and preach about earthly posessions.

But, some friends and family would like to generously give to little Roa and I thought we should post a few ideas.  Again, thank you for even considering our family in your Christmas budget!

Wind up toys, Koosh balls, tops, light up toys, small hand-held fun objects that Roa can focus on and reach for while working in his prone stander or at his highchair.
Hanging mobiles.  Roa loves the things that hang from the ceiling at his many therapy or doctor visits.  We would like a few for around our home.
Toys that are easily activated with a button, switch, or lever.  Roa wants so badly to make the cause and effect toy operate HIMSELF!
Music CDs and DVDs for Roa to listen to or watch while in the HBOT chamber.

As costs of Roa's medical care, therapies, adaptive equipment rise, we have decided to take up Roa's Auntie Ellen's offer to open a savings/benefit account in Roa's name.  We will respectfully be accepting donations for assistance in paying for the expenses of Roa's continued developmental progress.  Details about where to send donations will be on our blog shortly.

A Boy and his Dogs

Seriously?  Could you find a better therapy than "Lovin that pet o' mine"?
Here is our one of our best therapist, Molly, hard at work in the backyard with her boy. 
Can you see the small portion of her tongue sticking out?  Yep, that is Molly going in for the sensory stimulation technique of her choice while Bryan intervenes.
Roa honestly is most movitated in life by Max and Molly. He constantly is giggling and wanting to get by them to play. We walk to the dogs, crawl to the dogs, kneel to pet the dogs!
We think Roa is under the impression that he is part dog.  If you encounter him and he grabs you, wide-mouthed and ready to bite on your arm, be prepared to go into full doggy wrestle match!

Special Delivery

We are waiting with anticipation for our new hyperbaric oxygen chamber to arrive at our home!  We have finalized the deal with WI-HBOT center and have purchased their display model.  Very nervous and excited to have a chamber at home to continue our oxygen therapy for Roa.  The chamber should be here sometime this week so we are going to be busy this upcoming long holiday weekend with clearing a space in our basement to set it up.  Our plan is to have Roa begin sessions right away in December. 
I know,... I have promised to post new videos of the boy and I haven't followed through!  I will get at it soon! 

There's Always Tomorrow...

Roa and I continue to truck each Wednesday to ECFE class at Normady Park School.  We run with our heads cut off (actually only I do the running) getting the bag packed, breakfast in us, dressed, bedheads combed, afo's and shoes on, in this season- hat, coat, mittens, ...and into the car.  We skip the much-needed morning nap so that Roa can go to school and be "a big boy" and interact with the other kids.
Roa seems to really like it.  Pat plays with Roa while I do the parent part of the class.  She says Roa watches everything and everybody at play!  Taking it all in- that's our guy.
I put on a happy face and join in the discussion when I feel like giving input, but there is always that slight knot in my stomach.  That little thought going through my brain ,constantly, as we discuss toddler behaviors like running away in the parking lot, climbing out of the crib, yelling NO or MINE, getting into EVERYTHING....
 The little questions running over and over... Why weren't we blessed with these toddler "problems" with Roa?  When will it be my turn to ask how to battle these wonderful issues?  Will it ever?

As a special educator, I would have told me to "Speak up!  Tell these other mothers what you are going through!  Educate! " 
But, as a mother of the special guy in the room, I just want to listen and wish and dream about another day... Maybe I should tell them that Roa is starting to slowly go through the motions of crawling.  That he can hold things for a few seconds without them flying out of his hand.  Maybe I should ask their opinion on how to entice Roa to roll over on his own or how to battle his gag reflex with solids...
 But it is too hard. Period.

So, I will share with YOU because either you are visiting our blog because you are curious about our life or you are inspired by Roa's small triumphs. 
I will share with you that Roa makes a little squeal when we pull him around on a blanket ride through the house.  Roa does a little full-body shimmy with excitement when we walk into his bedroom after his nap.  Roa cannot hug or kiss, but does this sort of nuzzle and bite of my neck to show his love.

These are the things that keep my spirits up as I dream of tomorrow and the possiblity of a few typical toddler troubles in store for the Thayers. 

Awaiting the Chatter

We have had a few therapists and people in Roa's world ask about his communication skills lately.  Roa is almost 17 months. 
A typical developing child at his age would have 5-10 words that he could use confidently to communicate. Mama, Dada, Up, No, Cup, Truck, Ball, More.... all typical firsts. 

Roa does not use words yet.  Does he understand language?  Very much so!!  Roa knows many words- get your blanket, ball, outside, butterfly, walk, where are your socks/shoes, Mom, Dad, all his pets, airplane, all his therapists, juice, milk, Elmo....
But, he doesn't talk yet.  He yells, coos, laughs, babbles, screams, cries... but no consistent words.

Are we worried?  Yes, of course.  But, after years of teaching Early Childhood Special Needs, I know that it will come.  Give it time.  We are doing the various communication "bag o' trick" methods- language rich environment, talking about EVERYTHING to him, reading and naming objects in books, giving him choices of objects so he can communicate his desire, working on YES/NO questions and the head shake.  I am fluent in sign language and have signed to Roa to stimulate language since he was born! 
He does not nod yes or no yet.  He does not sign familiar words yet.
He listens intently.  He watches every sign we make.
And so we wait........ patiently.

Exciting News spot for HBOT!

http://www.myfoxny.com/dpp/health/091109-special-therapy-gives-hope-to-sick-girl

Check out the above link!  My BabyCenter friend, Jennifer, sent this link to me of their journey through HBOT.  What a great story for them to share with the world!

Wriggly Roa!

Weekly Update-
The botox is kicking in! Roa is wobbly when walking, can sit with more ease, and his little thumbs are out!
We are seeing some frustration with these muscle changes. He cannot stand for as long as he used to at the ottoman while playing. He goes limp in the legs and plops to the floor while walking with us. This does make him a bit mad. But, on a positive note, he is able to grab things and actually get them IN his little paws with those thumbs more useful! That has been surprising fun for Roa! Another perk is that, with the walking difficulty, we are working more on crawling and Roa is not fighting it as much. He is starting to move his arms and legs,...slowly, in a crawling pattern. That is exciting for us all.
Craniosacral therapy has been great the past two weeks for Roa. We firmly believe that time with Kim and also with Angel in Minneapolis has really opened up something in his arms and shoulders. With that and the botox, Roa has been sleeping for 5 SOLID hours in a row!!!!!! LIFE HAS A NEW COLOR FOR MAMA!
Today we are off to Dr. John, the chiropractor for an adjustment for Roa and myself. All this crawling is giving us BOTH some grief! We have cut out our Friday aquatic therapy time with Andrea. It is nice to have a day without a scheduled therapy. It is great for me to have that time to focus on working with Roa, myself- using my ol teacher bag of tricks along with following through with all the therapist's recommendations.
We march on....

Becca can HEAR!

I just had to post today that I got a message from Melissa, mom to Becca, who went through Hyperbaric Oxygen Therapy at the same time Roa did. Becca was born very premature, had medical issues, cerebral palsy, and was deaf. She is a bright, cute little 5 year old who moves around confidently in her power wheelchair and used sign to communicate.
Well, since HBOT and their return back home, Melissa noticed Becca was more in tune to things. She took her to the doctor who told her to visit the audiologist. Becca is NOW HEARING in her right ear!! She is being fit for a hearing aide and will be able to hear almost completely in that ear! The audiologist gives credit to the HBOT!

Miracles are happening, people, all around us everyday! Just open your eyes and count yourself lucky to be a part of it all!

Roa update:
He had a great session yesterday with Kim, his craniosacral therapist, and Angel, a craniosacral therapist in Minneapolis who specializes in children. We saw so much peace and calmness go over Roa as they worked. It was amazing. Today Roa seems to be using his arms with more ease, opening his hands up to grab, reaching high above his head. It could be a combination of the botox and the cranio. work... whatever it is, I am RUNNING with it! Today we will work on that crawl, crawl, crawl!!!

"We've heard about Roa!"

I wanted to give a quick update about Roa's botox treatments. He handled the injections very well. We have not seen any negative side effects. Actually, we have seen some very positive things- he is calmer, more attentive, sleeping better. He is unable to stand at the ottoman for as long as usual, his legs due seem weaker. He also is easier to place in a seated position on the floor with legs apart.
This morning, however, Roa woke up at 4:00am laughing, wiggling and giggling in his crib!! What is up with that!? It was hard to take that early in the morning, but I will handle laughing over screaming ANY DAY!

Now, for my thought of the day-

Yesterday, at ECFE, Roa and I were supposed to meet with the sales rep. from Reliable Medical to chat about adaptive equipment for someone Roa's size/age. Mary, Roa's PT, set this appointment up. Long story short, they were running behind schedule and Roa and I went to the Therapy Motor room to look for Mary. We met two of the other therapist who work for the White Bear Lake School District. They were nice and helpful in locating Mary and the sales rep. However, it was an interesting experience. Why,... you ask? Well, both of the therapist knew who Roa was. They said, "THIS is Roa!? HI! I've heard about Roa!"
Now, ...I know I shouldn't be paranoid. (I also know that Roa's therapists and teacher READ this blog, so I should tell them not to take this personally) but, it is weird to hear that people you just met have heard of your child.

My mind went to different places- Wow, they talk about Roa. Is it positive about how great he is doing? How aggressive his parents are in the fight for his development? Is it because he is cute, loveable, adorable? Is it because I am a ECSE teacher who was in a terrible car accident that might have resulted in his issues? Is it because I am a pain in the A*^ when it comes to questions and concerns? Is it because of his unique name? OR .. Is it because these therapists are preparing for the day that this "high needs" special child with cerebral palsy enters the school system and they will work with him?

I used to teach. I know that teachers and therapist talk. I also know that you DO talk about the kids with high needs that are coming your way. Yesterday, when these strangers KNEW Roa,.. I freaked.
I am so frightened for Roa's future. I ache to see him PLAY with other kids, TALK to me, MOVE on his own. I have stopped waking up and praying that today WILL BE THE DAY that he- crawls, sits, says Mama,... because it hurts when that special event doesn't happen on that day. I am being optimistic, yet realism has struck.
There is a chance Roa will not do these things as quickly as we like. There is a chance these therapists WILL work with Roa when he is 3 or 4 on these skills. But until that day, I need to hold on to the hope that our current therapies and interventions ARE the answer. They WILL make all the difference in the world.

Botox day

Roa had his first round of Botox this morning at Gillette. He handled it all like a champ. Mom was the most worked up about it! But we all made it through!
Roa couldn't have anything to eat since 5:30am and didn't get the Botox treatment until 11:00, so he was tired and hungry, but overall was in good spirits. They sedated him with nitrous oxide (laughing gas) and injected his thumbs, adductors, and hamstrings with botox. He remained just sleepy and calm through the procedure. After they gave him oxygen to bring him out of his sleepy state, he started to cry. I then could feed him and he was a hungry little monster!
The doctor told us to watch for any reactions- flu like symptoms, redness, poor muscle control. He said the some of the affects of the botox will be seen in 1-3 days and the full affect on the muscle in 1-3 weeks. Roa may get more "wobbly" and might not be able to walk around with us like he is used to. We will wait and see how he handles the muscular changes!

Craniosacral and I

Roa is napping, I am relaxing and drinking a cup of coffee... thought it would be a perfect time to blog!
I should be napping as well, however, this down-time is so nice to just BE. No walking around hunched over with my lil man, no singing, reading, entertaining,... no working on skill after skill! I am trying to find a little more Jennifer-time in my life. I have been so focused on Roa that my stress level has gone through the roof. Time again for reading, yoga, scrapbooking, baking.... life before KING ROA!

I had a "break through" of sorts with a craniosacral therapy appointment with Kim. Kim has been seeing Roa for a couple months and we have seen nice results. Roa is allowing more tummy time, weight bearing on his arms without complaint, and starting to go into all fours for crawling. Kim had mentioned that in order to fully help Roa, she would like to have a few sessions with me.
As always, I said, "Anything for my boy". I had a session at Kim's house 2 nights ago. WOW! I am completely a believer in the benefits of craniosacral therapy! To give you a little insight as to what it is, I will describe it as a "massage of the soul". Kim worked with me for one hour and I seriously have never felt so CLEAR, so positive, so calm and PEACEFUL. Craniosacral let me let go of a lot of "stuff" I've been carrying around for the last few months, helped me find some peace about my car accident, helped me deal with family and personal woes. I have a link about craniosacral I want to attach. I KNOW that it is helping Roa and I am now seeing the benefits for me. It is one of those "new-age" things that some people poo-poo. But, if it could even possibly help.... wouldn't you give it a try?

Time and Money

Okay, so I promised new video and pictures this weekend.... Sorry! We had a nice family weekend and I stayed away from the computer,.. except to budget plan with Bryan. Wow! It is really expensive to care for a child! Add the cost of therapies, supplements, doctor appointments, adaptive equipment, etc... you are in a whole different world of parenting!! We are doing pretty well though. No need to worry about the Thayer's, but WOW!
I just read my Babycenter friend, Mary's post about the cost of therapies. Isn't it just a crime to pay so much per hour...$150- to 300 for ONE hour? Insane! Insurance can only help so much!
We are thinking of lightening the therapy load for me and Roa and also the amount we spend each month. Through the winter, I can follow thru with recommended activities for strength.

We bought a new high chair for Roa this weekend with a gift card from the wonderful people of API! Thank you so much! Poor Roa was in and out of different seats, but we found one that supports him well, adjusts for height, reclines, is on wheels, has a nice size tray for activities, and a 5-point harness. They make so many different highchairs now-a-days, it makes your head spin! Now Roa can get REALLY serious about eating!! :)

Thank you to Warrior Moms

I wanted to post today about the wonderful mothers I have met through Babycenter! Janet posted a comment this week and it really touched my heart!
Heather, Jennifer, Janet, Melaina, Mary, Delayed Darlings group.... You are the Warrior Moms out there that drive me to continue with every doctor appointment, every therapy time, every new supplement. You are the reason I look forward to turning on this computer and opening to Roa's blog. You feel my pain, you share my joy for all the little tiny accomplishments that are HUGE in the eyes of a mother. You and your children are in my thoughts everyday as I research, play, plan, cry, laugh, and... carry on!
Thank you for being there, every time I move the mouse!

Time for- "Look Ma, no hands!"

I got a stern talking to from HBOT Erin :) that I haven't posted in awhile. So, here you go, Erin!

I chatted with Erin yesterday about the possiblity of getting a home chamber in the next couple months to begin home treatments with Roa. We have been waiting to start again based on our reading about a recommended "wait time" in between groups of sessions, but Erin said we could start anytime with a home chamber. We are looking into the costs, pick up vs. delivery, used vs. new... etc.

Roa is skipping school today. ECFE was just too hard to get too with a cranky teething limited sleeping guy! Our nights have been going ok. Last night, he just couldn't seem to settle in. Drooling and chewing his hands until the good ol tylenol kicked in.
We have Craniosacral therapy this afternoon with Kim. Roa likes Kim and she relaxes us both! She has been kind enough to come to our home for therapy and save us a trip out. Nice on yucky rainy days like today!

Yesterday, Roa had PT with Andrea at Courage and we also did our independent aquatic time. Andrea made some good points to Mom about letting Roa experience natural consequences for his movements. "If you arch back, you will hit the floor. If you bend down and out of the chair, you need to put out your hands". If you let go of the couch, you will fall."... I admit, I have been a "helicopter mom" not letting Roa get hurt or feel helpless. I know that he needs to start experiencing some challenging movements as well as some failure.... it is hard. Especially with my overly vocal "Yeller"! And the kid falls like a tree! But, I will do my best to give him those challenges and plan more activities where Roa will have to increase his "cause and effect" motor planning skills.

As for King Roa's favs of the week-- Roa loves swinging in a blanket. He trucks it over (with us holding him up, of course) to the chair or couch and pulls down a blanket to the floor, hops on it and lays down with a giggle. We swing with Roa in the blanket and he laughs! We have been working on him communicating he wants "more" swinging through sign language and vocalizing and he does a great job gesturing and giving a "grunt". Baby steps toward speech.
Roa also has taken a liking to graham crackers dipped in rice milk. Great texture experience for him... and he is eating more! Yeah!

We have a couple cute videos to post, hopefully by the weekend! Thanks for reading and have a good Wednesday. I love the comments and emails after you read, so keep them coming! Boosts my trampled spirit...

Questions

So while taking a much needed break with a warm bath, I pondered our life and what it has become. I came up with one word that fits- Questions.
Our life has become all about questions. Everyday, we question our choices in parenting- sleeping, feeding, routines, therapies, supplements, medications... are we making the right choices? Are there better choices? Are we doing our best in parenting? We question ourselves... daily.
Then, we are bombarded with questions from our therapist/doctor-of-the-day. What are we working on with Roa? Have we tried this/that? What is he doing now? When is our next appointment for this/that? Do we want to try a new this/that? And after the questions, I wonder...am I answering them correctly? Am I doing ENOUGH? Is he really doing the new things I am saying he can do... or am I just a hopeful parent looking through rose-colored glasses?

Then we move into the questioning of concerned family and friends which really is a Catch-22. Some ask too many questions and we feel overwhelmed. How is he sleeping? When are you going to quit breastfeeding? Is he eating more solids? Is he talking yet... rolling yet... sitting yet? Have you thougth about this new therapy/idea/option? What do you need from me?
Others don't ask a single question and you question why they don't care.

As I write this, I guess it all is typical for any parent... the questioning, that is. Every parent has to report to caring family and friends about what their child is doing, saying, eating,.. now. However, with a child with special needs, each answer to the question comes with a little stab to your heart because you YEARN for you child to be MORE. Each answer makes you realize that something isn't happening quite yet and you pray it will soon. Each answer brings MORE questions about your child's future....

So, to answer the current QUESTIONS:

How is Roa doing with ECFE class? He likes to watch the other babies play, but needs help actually manipulating the toys himself. It is a good experience for Roa. Very emotionally difficult for Mama.
How is Roa doing in his new prone stander? He likes to be in it and enjoys interacting with you in front of him. He is tolerating time in it for 30 minutes 2xday and as long as you entertain him, he is a trooper. He is tolerating his AFOs and thumb splints without much fight.
Is Roa talking or communicating? He has said "ball" various times this week. Am I sure? 90 percent. He is gesturing towards things he wants. He is not signing even with a sign language prompt. He is babbling alot and making new sounds. Are we sure he understands language? 100 percent sure.
Is Roa moving on his own? Not yet. No rolling, crawling, cruising on furniture without us initiating the movement. He still likes to walk all over the place with us holding him.
Is Roa sleeping better? Varies night to night. He has been sleeping better the last week with the suggested changes from Dr. Garcia, sleep man. He is currently getting top and bottom morals so as typical, doesn't sleep well.
Is Roa eating better? Roa loves to drink juice, water, rice milk from a straw, sippy cup, and is working on the regular cup. He is eating more food, but still likes pureed foods and gags on mashed foods. He likes having our regular dinners pureed. Roa still breastfeeds around the clock and really prefers it to solids. Are we concerned? Of course, but the feeding team at Gillette told us not to worry, it will come in time. Is his cerebral palsy affecting his eating? We don't think it is his CP, but the fact that his reflux affect his eating habits.

Please don't read this and think you must stop your questioning. Please don't read this and think you have to start questioning even if you really aren't that interested. Please just read this and contemplate being in "our shoes" for a day.
It's always good to question "What if my life was different? Keeps you humble, grateful, and empathetic to others. I ask myself that question everyday. Along with a few other questions.........

Reflecting

Today is our anniversary! Crazy that we have only been married 2 years- feels like we have been with each other for a lifetime already. I wouldn't trade a single day! Love you, Bryan!

We have had a few discussions and a few people have asked if we think the HBOT was worth it. Bryan and I talk about this all the time. We never change our opinion- it was worth every penny! After the HBOT, Roa is just a different kid. He is happier, calmer, more open to change. Roa is showing more control of his neck and trunk and is allowing stretching of his arms and weightbearing with his arms. We are seeing more fisting lately, but I think it is due to the fact that Roa is attempting to reach and grasp toys more. He is very driven to play lately. He also attempts to get on all fours alot and moves his arms and legs, but isn't yet coordinating the movements.
We are still considering the purchase of a chamber for our home possibly this winter. I have been happy to email and speak by phone to my new friend, Heather, mom of Carson whose family purchased a home chamber. They have been seeing nice little changes continuing in Carson since treating at home- stronger army crawling, vocalizing, stepping to walk with support. Heather has been a great friend and resource for me! Thanks, Heather!

This weekend, we have played around with the prone stander that we were given to try from Andrea, PT at Courage. Roa really like being in the stander! We were very surprised! He works on hip placement, weight bearing through the legs, balance and stability in the stander. It is going to become a big part of our home therapy for Roa! Baby steps towards independence....

Roa is such a nature lover! He laughs with such joy at butterflies and grasshoppers we chase through the flower garden! The birdfeeders outside our window are better than any DVD! :) This weekend, we picked the last of the tomatoes and peppers from our garden and Roa is such a good helper- pulling at every plant around. When the dogs run around the yard, Roa just squeals! Now that the leaves are changing, Roa walks with us through the grass and picks up the most colorful ones. How HARD he works to stoop and attain that leaf! Those are the moments that we will remember forever. Hands On Experiences that are better than any toy in the world!

Oh, the people you will meet

Roa and I met a family at the Courage Center. A father and son "team". Mike is 24 and had a tramatic brain injury after a car accident. His father, Dave, was driving home from the Cities to Hudson when they had an accident and roll over. Mike was 18 years old at the time. A senior in high school. They have been coming to Courage since then and Mike is relearning to walk, talk, etc. Mike loves Roa and smiles so big when he sees him in the pool. He gives Roa a fist bump every time! Roa just smiles. Mike has a tatoo on his back... INVINCIBLE, it reads. I am honored to be in the presence of both Mike and Roa. They are invincible. They will succeed. They are teaching me how to live my life.

Mystery solved

Roa was given barium for the swallow study yesterday. Barium is very constipating, especially for little guys. Roa was miserable last night and today. Tonight, with the help of a suppository, he pooped! Sleep little angel, sleep............

Coffee and the Teletubbies

How positive I sounded last night. Roa must have heard our optimistic discussion and decided to test our sanity. He was up screaming from 12:30 until 3:30am. Up for the day at 6:00am this morning. I tried to get him down for a early morning nap at 7:45 but...it's a no go.
No ECFE class for us today. I don't know how I would make it for a 9:15 class and there is no way Roa could handle it on such limited sleep. He is a bit delirious right now... laughing wildly at the Teletubbies behind me. He gets mad if I try and hold him right now. Those teeth are moving in. I'm sure that is part of the problem. Poor Bryan must be exhausted at work with only 3 hours of sleep. He is a trooper.
And we carry on.... foggy and beaten.. but we carry on.
Craniosacral appointment this PM with Kim. Hope she can help relax Roa.

Eat, Sleep, Pray

Monday, Tuesday and we are already exhausted for the week! Yesterday we had our appointment with Dr. Garcia of the Gillette Sleep Clinic. We LOVED him! He listened to what we had to say, asked us questions that matter to our family, and praised us for our attempts at helping Roa sleep. He did not start off by listing medications we could try or saying "sorry, babies with CP...." He gave us a plan to go by of a behavioristic approach through sleep restriction. It is a method that will be challenging for a few nights, but eventually, Roa should be sleeping for longer portions of time. If things don't go as planned, there are medications we can look into. It should also be noted, sadly, that many kids with CP do wake 1-2 times during the night for repositioning for a large portion of their lives. They CAN, however, learn to go back to sleep on their own.
The second part of our morning at Gillette was with a speech therapist. We talked with her primarily about Roa's issues with solid food intake. She helped us set up a swallow study, which we had today. The swallow study was really quite interesting and went very well. They perform an xray and video tape as Roa swallowed barium with juice, puree, and a cookie to see how he moves a variety of food through his mouth and throat. We found out that Roa does a good job of manipulating liquid and purees in his mouth. There is nothing mechanically wrong with his feeding. He does, however demonstrate immature patterns of swallowing chunky solids such as the cookie. Long story short, Roa eats like that of a 6-9 month old baby. He needs to develop more oral control of his mouth before we move forward with solids. With the help of oral motor activities and practice with various textures, Roa will eat chunky solids in the near future!! YEAH! It was a blessing to hear that the therapists feel Roa has good oral control. That should make speech production come much easier for him, although most likely delayed like his feeding.
Laurie, the OT, came this afternoon and gave us great ideas and props for oral motor activities. Roa has his OWN oral motor agenda,... he is getting a few more teeth! Poor kid. Makes all this sleep and eating work even MORE of a challenge for us all.
We also had a special delivery for Reliable Medical tonight. Roa's PT, Mary has set up for us to give a test trial of an adaptive stroller, assistive seating insert for chairs, and a prone stander (for work on weight bearing, trunk strengthening). We will be testing them out and seeing if we want to go ahead and purchase these products. It was actually exciting and emotionally challenging at the same time to have the delivery man leave this things. It is not easy to think of all the equipment we may be looking at for years to come. People take for granted how easy some of us have it when attempting to simply sit or stand. We pray that much of the equipment will be short term and that our little "Powerhouse" will continue to have the drive to do things independently.

Doctors, therapists, and teachers, oh my!

We had such a busy week this week! Roa and I started ECFE class this Wednesday. I asked Pat, Roa's Early Intervention teacher to help Roa play with the other toddlers while I go and do the parenting component of the class. Thanks, Pat!
Roa loved watching all the other toddlers. When we had group circle and the teacher, Nicole, broke out the flannelboard with "wheels on the bus", "itsy bitsy spider", and "twinkle, twinkle", Roa squealed with delight! How does SHE know my favorites!!! :)
Roa is getting two molars right now, so we have to throw that into the whole sleep confusion. The sleeping is changing, however,...longer periods of sleep and he is going down without a fight.
Monday we are off to the sleep clinic at Gillette. I also requested that we have an initial visit with a speech therapist to look at Roa's swallowing and see about some oral motor exercises. Roa still insists on primarily breastfeeding and has such a strong gag reflex with solid foods. Now that we have taken away some of his favorites- yogurt, oatmeal, puffs, ... we are dealing with some eating refusal. Roa has mastered the straw, however and loves to drink water, juice and rice milk from a straw or sippy cup. We are working on a regular cup. He also has had a few of our family meals blended and has like it! Hooray! Slowly, but surely....
November 2nd is the date set for Roa's first Botox injection. We are a bit nervous about this process. Botox has been around for treatment of cerebral palsy as a more intervention method than the beauty treatments of today's superficial America. Derived from food poisoning, botox in small doses can act as a muscle relaxant when injected into the tight portions of a child's body. The scary side affect is flu like symptoms- we pray Roa doesn't get hit too bad. I've attached a link about botox as an FYI. Read if interested.
Speaking of needles, Daddy has been brave enough to venture in to the world of B-12 injections for Roa! I have to find a great site to link for that. .. Overall, methyl-B-12 is known to help children with neurological disorders develop better attention, boost speech development, aid with sleep, and give an overall calming effect. Roa has had 3 shots and seems to be just happier and talkative after.
Well, enough for today. Have a great weekend everyone.

Off to a busy week!

A new week begins with appointments galore! Roa was off bright and early with Mom and Dad to get his AFOs altered a bit to fit his little legs a bit better while sitting, bending or crouching. We also had Jason, his orthotist, order him his new knee stabilizers that he will wear part of the day to help train his legs to "stand correctly" and control any hip issues.
After that appointment, we were off to the general pediatrician for his 15 month appointment. All was well- his iron level is normal, heart, lungs, etc. all okay. We had a two immunizations today and Roa was a champ and only cried alittle.
This afternoon, Roa and Mom trucked off to Courage for occupational therapy with Carissa and then independent swim time. Carissa worked on sizing Roa for thumb splints that I will be ordering tomorrow. She also gave us a therapeutic listening CD to try 2xday for a week or so to see if it helps Roa establish better sleep patterns. Carissa was happy to see Roa's increase tolerance of being on all fours, his tummy, and just bearing weight on his hands.
Tomorrow, we have a Laurie, his home-based OT coming to visit and then, when Daddy gets home from work, we are off the the apple orchard for a photo session with our new photographer to take Roa's 15 month pics! New pictures will soon follow!
Thank you to all of "Roa's Angels" who stopped by yesterday for a bite to eat and a chat! It was nice for Bryan, Roa and I to personally thank the people who have helped us out so much the past month. If you didn't make it, give us a call and we can plan a get-together! :)

Weeks update

I have had a couple good friends and a sister email and ask for an update in the last two days, so thought I would take a brief moment in this busy day to share a bit. Thanks, you guys, for showing interest and caring!
Our doctor's appointment on Tuesday was overwhelming yet good. We met with the physiatrist who now will be working with us and Roa and talked about getting him seen at the Gillette Sleep Clinic to see if they can help Roa achieve better sleep patterns. We also discussed doing a trial of botox injections in a few portions of his body, hands and hamstrings that hinder his movement due to muscle tightness. We are in the process of being scheduled for those appts.
Roa had xrays taken of his hips and also was fit for new arm splints to aid with weightbearing and leg splints to stablize knees when learning to stand correctly and balanced.
We received Roa's urine analysis for the HBOT center and are looking at possible supplements that will calm the "hyperactivity" of his brain chemistry that might be causing his sleep issues.
Today we began with a new craniosacral therapist. I think she is a good match for Roa and we had some nice release of tension at the session. We also are heading to Courage Center for aquatic therapy this afternoon.
On Sunday, the Thayers will be hosting an Open House as a thank you to friends, family and Bryan's coworkers at API who supported us either financially or physically -by dog/house sitting throughout this last month. Hope you supporters out there recieved your invitation and can stop by for a personal thank you!

Long story short and repeated...

Horrible night last night. Desperate for any sort of answer. Tired and depressed.
Skipped OT today due to BLESSED napping! Carissa his Courage OT suggested Therapeutic Listening for increased sleep cycles. We will give it a try.
Roa is getting adjusted by Dr. John today. Hopefully will help.
In the meantime, researching sleep disorders and cerebral palsy. Therapeutic beds for positioning? Melatonin dosing? MB12 shots?
Praying the doctor tomorrow will help us figure things out.

Update after a break

We have settled back into our weekly routine here at the Thayer's. Roa is back at therapies and working hard. This past week, we had a therapy every day and Daddy completed the week by taking Roa swimming on Saturday.
Roa's therapist's were impressed by his strength in neck and trunk and also his open hands. My favorite response had to be Andrea, his aquatic therapist, who teared up a bit! Thanks, Andrea! :) We are very proud of our little guy and the way he is determined to conquer his movement limitations.
Roa has been just..."different" since we have been home from HBOT. He is overall more relaxed and happy. He goes down for naps and bed without a big fight. He still is getting up 2 times a night and is sometimes up for 30min - 1hour in the night, but we are working on it. We are doing some "cry it out" and some massage,...things are slowly getting better. If only he could just stay asleep.
Roa also is liking the all-fours position for a few seconds and is weightbearing on his arms. He is babbling more and we are praying to hear some words someday in the near future!
Eating is going up and down. We got the results from the further intolerance testing and Roa has quite a sensitive tummy! Dairy and grains are the biggest offenders. We are making changes and adjusting slowly.
They say that hyperbarics treatments affect a child's brain but some of the changes occur over the following few months. We watch every day to see new developments...

Tomorrow, Roa and I are off to Courage Center again to see Carissa for occupational therapy. Tuesday is a big day with a visit back at Gillette Children's Hospital to see the doctor in the Pediatric Physical Medicine and Rehab. department. We have waited a LONG time to see Dr. Gormely, who we have heard is one of the best doctors to see. He will look at Roa as a whole- brain, body, movement, adaptive skills-and help us decide what best route to take in helping him learn to be independent. Laurie, Roa's OT from the school will be going with us to help us take it all in.

September 24th is the night of our next Great Expectations Parent group/playdate. This is the group that I started in White Bear Lake to connect families of babies and toddlers with special needs. Our first meeting went very well with 6 moms in attendance! I moved it now to evenings so that we can get the working moms and also the dads to come! I am excited to see the great families I met again and share stories and resources.
Time to go relax before the "night shift".

Fun at home

Well, the Thayer family is finally home and settling into life and routine in White Bear Lake! Boy, have we missed it! Roa is active as all get-out, wanting to walk all over the house, kick his ball, and get outside in his yard. The dogs sure are happy to have their family back and have enjoyed our nightly walks again. It is nice to meet and greet all the neighbors who we missed seeing while we were gone. Many of them helped take care of our dogs and mowed our lawn. Thank you, neighbors!
We had a nice weekend including a trip to the very busy, MN State Fair! Wow! Record attendance is right! Roa liked watching the sky rides and climbing on the tractors of Machinery Hill.
We have decided to take a new turn in the Roa's Sleep Saga and attempt a little night weaning and "cry it out" method. We are not sure what we are battling when it comes to sleep, but we know we have to figure out how to get this boy to learn how to self soothe. We are also looking at different "therapy" beds that are available for toddlers that help with positioning.
Tomorrow begins the busy work week with Roa's therapy line up, starting with Pat, his teacher through the school district. Roa loves Pat and her magical bag of toys! Roa also has OT, PT, and aquatic therapy this week. It will be exciting to hear the opinions of others as to Roa's newly developed control and strength.

Day 20- Last sessions!!!

So, it is bright and early this great Friday morning! We moved up our last sessions to 8:00am and 1:00pm so that we can hit the road this afternoon to get home tonight! I am so very excited to see that great little house on Sun Terrace! I am going to run through the backyard with those dogs! It will be neat to see Roa's first reaction to the being reunited to Max and Molly! He misses his dogs!
Last night, we had bowling fun and dinner with Jini and Murali as a "Last Hoorah". Roa laughed at the matching bowling shoes we all wore! So of course, we all had to do a little tap routine to entertain him. He thought it was the best! We will miss being this close to Bryan's cousins! They were wonderful support to have here in Madison.
Roa didn't make it through the whole bowling excursion. Momma and Roa had to head back to the hotel around 7:oo and Roa hit the sack at 7:30. He got up for a total 3 times last night and slept straight through from 1:30am to 6:45am!! Such a puzzle as to why he gives us good sleep only about once a week???? We are going to start tracking EVERYTHING when we get home and start our new food plan. Eating, pooping, napping, medications, therapies, etc.... Someday we might figure this kid out! We also are waiting to hear back from the lab regarding his urine analysis and further food panel.
I posted one more video this morning, "Roa and his animal train". It shows some nice strength and tolerance of new positions. I wanted to also add that I have no idea why extra youtube videos attach with my posts. Excuse the videos that don't seem to make sense, please!

Day 18- New videos to share!

We have posted three new youtube videos of Roa hard at work! Make sure you check them out! These videos show Roa's increased head control, tolerance of kneeling and weight bearing on his hands, open hands performing a task, and Roa's new love.... kicking balls like crazy! We are excited to share these great accomplishments with you. We have learned to celebrate EVERY little thing with the Thayers and are blessed that Roa is showing such a new "awakening".

Today we also had a guided tour through a home chamber. Erin at the HBOT center was kind enough to spend some time with us to show us how the home chamber operates, answer our questions, and even let nervous Momma in the chamber to give it a test drive. Now we are considering our options. It is a big decision to make.

Jen's old BRF teaching buddy, Heather stopped by the hotel today with her two boys, Nelson and Teddy. They live in Milwaukee now. The kids got to swim at the hotel and have pizza at the bowling alley while Daddy took his lunch to played tag and supervise. Heather and Jen got to catch up and talk "parenting". It was great to see them!

Day 17- two more days/four more sessions to go!

Roa completed 2 more sessions with Daddy today and continues to enjoy video time and a little play time in the chamber. He goes in without a fuss, but gets a little antsy as the 1 hour 20 minutes drags by.
After the morning session, Roa was able to be adjusted by Dr. Charity, the chiropractor in the adjoining office to the center. He was very tired and ready for his nap, but not so cranky today so he responded well to the adjustment! It went alot better than Monday's attempt. YEAH! Hopefully, it will help him sleep a little better tonight. One can only hope! Momma got adjusted too, so we both should be feeling better. Thanks Dr. Charity for your patience with the Cranky Thayers!
Life in the hotel is definitely old. I am done with hotel cooking, but am proud of us for eating out so little! That API gift basket sure helped! We are taking a slight "break" from the strict food intolerance diet and Roa and Mom are just eliminating the dairy and limiting the rest of the "bad" foods until we can get home and get cooking!!
Roa development update. Hopefully tomorrow morning our video posts will be ready to add to the blog! We are very proud of Roa's head control and trunk strength. He continues to surprise us with his attempts at kicking a ball and reaching to stop it as it rolls. We also commented tonight at how in tune Roa is becoming to language. "Go get your balloon" "Where's the flag?" He is showing understanding of alot of words as well showing desires to do certain activities. Unfortunately, we also get the attitude when he doesn't want to do something, but how wonderful that he is making choices!

Day 17- My Husband, My Hero

As I write this, Daddy is in the chamber with Roa. This is after -getting home from work yesterday, going to the bank to make sure bills are paid, cleaning the house up, walking the dogs, driving the 4 hours to get here at 12:30am, sleeping 1 hour before helping me with Roa who was awake from 2:00 until 4:30am. On the way to the HBOT center this morning, he even found it possible to give Roa and I a good bellylaugh through his dry, humorous comments.
I love my husband more each day. He is the strongest, most amazing person I have ever had the pleasure of knowing. Last week, when I was at my breaking point, Bryan brought out our wedding CD of "our songs" and we danced in our hotel room. Tears flowed from my eyes as I realized he truly is my ROCK, my sanity during this difficult part of Roa's life, difficult part of our lives together. Many people have asked, how WE are doing as a couple during all of this. Honestly, dealing with Roa and his developmental issues has only made us stronger.
I hope that everyone has experienced a love like this in their lifetime. I feel blessed to have the pleasure of being Mrs. Thayer.

Day 17- Starting off strong

Isn't it amazing that when you put it in your mind that you need to function even with limited sleep, you can do it? The human body and spirit is an amazing thing.
Roa slept on a schedule similiar to when he was first born- up and down with 2 hours in between until he was up for the day at 5:15am. He was smiley, snuggly and quiet, but just awake. So much better than yesterday's Crab-fest! Wouldn't it be great to get into his little brain and see what is going on?
On the downside, however, I think he is officially constipated. I am off to Target after the PM HBOT session for Prune juice! I think it is the switch from oatmeal and barley cereals back to rice that has done it. He has been liking bananas in small chunks too. Also binding...
This diet thing will take some time to work out.
Roa continues to surprise me with the new skills he as acquired that we can only contribute to the HBOT. Reaching and grabbing things. Roa constantly reaches and touches my face as I breastfeed him and it just warms my heart. I've waited a long time for that.
One more session today and then Bryan is here for the rest of the week.

Day 16- Hard Days Night

Last night was in no other words, horrible. Roa went down at 8:30 was up by 10:10, up again at 11:30, up again from 2:30 until 3:45, then up at 5:00 until 5:45. Of course, he had to get up for the day on schedule...6:45am! I was very thankful Vickie and Brit were here to take him for the morning couple hours so I could get a solid two hours. I am weak, tired, foggy, depressed, to be quite honest.
At the first session, I had to have them stop the pressurization so I could use the restroom and gather my nerves and have a good cry. The walls of the chamber sure close in on me when I have had no sleep. The staff there is so supportive and encouraging! Roa also was cranky to start off the session... imagine that after such poor sleep. Yet, he didn't sleep in the chamber and didn't nap afterwards. Just continued to fuss all morning.
Luckily, he slept and nursed on and off for the majority of the second round. I too got a few minutes. Right now, Roa is swimming with Vickie and Brit so I can get some rest. Hopefully, posting on the blog will help clear my head so I might be able to sleep a wink.
I was very disappointed this morning with the chiropractic appointment. Roa was fussy, tired and crying, so she didn't attempt to adjust him much. She asked me to stop in after his second round of HBOT, but she wasn't in her office then. Might now just wait for Dr. John to adjust him when we get back to White Bear. Dr. John Mack is the best and Roa responds so well to him.
I talked again briefly to Dr. VanDyke when he check on us this morning. When Bryan comes this week, we will attempt to the the urine collect for futher blood work to see what might be hindering Roa's ability to stay asleep and get a good REM cycle. Until then, my life continues to be foggy..........

LAST WEEK- Sunday night thoughts

So tomorrow we begin our final week of Hyperbarics. We are very excited to be nearing the end. Bryan left at 7:00 tonight to head back to White Bear for work in the morning. Jen's sister Vickie and niece Brittney are here tonight to help out with the travel to and from the sessions tomorrow... and the sleep session tonight. (fingers are crossed) I can't believe it, but Brit starts school Tuesday! Where did the summer go?
It feels like fall here. After a couple hour visit from Jen's sister Valerie and husband Brian, we took off to the Madison zoo. It was a perfect cool day for active animals. Roa laughed so hard at the prairie dogs and the buffalo. He didn't want to leave the seal exhibit, as they were swimming like mad! He is such an animal lover, just like his mom and pop!
I would like to thank all of you who called Bryan or I and sent warm messages this week during our VERY difficult, trying time. Roa has been pushing us each night. We are desperately trying to figure out how to help him get some sleep, for us as well! Hopefully, the new diet plan avoiding food sensitivity items will help some, paired with melatonin, epsom salts baths, etc. Still trying to piece together the puzzle...
This weekend, we saw some really nice "differences" in Roa. Sitting so upright, open hands, standing tall, lying on his side, better attitude with usual stressors. After this last week's sessions, Bryan and I both said, this was a very difficult experience to deal with, one month away/two therapy sessions a day... but we are so very glad we did this for him and it really was worth every penny!
Off to bed I go, catch some shut eye before the "night shift".

Day 15- Always look on the bright side of life

We had a great friday evening at the ol' Country Inn, so I didn't get to post last night.
Today, we are looking at a cool day here in Madison. Sweatshirts, leaves turning, cool wind. Can't believe fall is almost here. September 23rd, Roa begins ECFE class with Mom.
We also need to start planning our next Great Expectations Family Support Group meeting.
Yesterdays session were great! Dad and Roa came out of the chamber smiling! Roa took two great naps yesterday, laughed and frolicked in the pool, and joined Mom and Dad at the Ten Pin Bowling Alley next door to the hotel for dinner. Roa has been doing a nice job trying bits and pieces off our plates. Very encouraging... as long as we stay away from wheat, oat, dairy..... Which reminds me, today we must grocery shop for our new food sensitivity diet.
Last night on our family walk, the sidewalks were hopping with frogs! Daddy caught one and showed Roa. He looked puzzled at first. Wide-eyed, confused. Then, he bursted into a full-blown belly laugh! It was truly priceless and a perfect end to our difficult week.
One more week of HBOT to go. We are counting down until we can see Max and Molly, Beast and Coalie. There was a Helping Paws Golden Retriever at the center yesterday. Roa was mesmerized, watching Mozart's every move as the dog paced, waiting for his master to come out of the chamber. Roa got to pet the furry helper and he was happy as a clam! When Mozart left the room, Roa cried. He misses his puppies! And it sounds like they miss us, as Molly has escaped from the backyard on several occasions trying to find us. Homeward Bound, huh, Ellen! :)

Day 14- Food Allergy test results

The results are in from the intense food allergy testing done on Roa and I. The results are suprising, hopeful, and troubling all at the same time. Roa shows high allergic sensitivity to oats, cheese, milk, yogurt, peanut, kidney bean, and aspergillus niger(a mold found on grapes, onions, and peanuts). He shows moderate sensitivity to wheat, corn, orange, and soy bean. With these results, Dr. Van Dyke recommended we cut these things from our diet. He also suggested we cut the items listed on low allergen including baker's yeast, gluten, beef, pork, and banana to see how Roa responds and then we could possibly add things back after some time. Wow! The Thayer's diet is greatly changing! Fruits, vegetables, rice, chicken and fish will be the staples.
We don't know how these dietary changes will alter Roa's CP, but won't it be interesting to find out what he will be like when he is feeling better? It should also be noted that these type of allergies usually run in families. Allergic responses to foods that go undetected over years can result in symptoms of depression, anxiety, irritable bowel, insomnia, parkinson's disease, etc... sounds a bit familiar to the Kriesel family tree. Physical symptoms noted are skin issues, dark circle under the eyes, diaper rash,... things our Roa has shown.
The other step we are now looking into is to complete the next food allergy panel that looks at the next series of most common foods (88 to be exact) that might cause issue. We also are looking into a urine screen to determine levels of hormones that could be affecting his sleep.

Day 14- Open thoughts and ramblings of a tired soul

As I sat today in the waiting room of the center, I watched the interactions of an 18 month old little guy and his parent. Ironic after my post this early morning. He is, also, there in the waiting room as his older siblings get treatment. I watch him waddle around, bending, stooping to pick up a ball...with both hands, with ease. He carries it over to his father and utters, "dadada?" questioningly. His dad , totally engrossed in his paperback, ignores his son's attempts at play. I'm sure not on any conscience level, but yet the toddler wonders off to explore another area of the playroom and the father continues to enjoy his "alone time", as all parents need and enjoy.
I sat there, screaming inside. PLAY with your son. Celebrate his ability to control his hands, feet, body! Bask in the glory of his new found skill! Jump up and down and let him know, "Baby Boy, you are an exceptional little creature and YOU want to interact with ME! What a honor for me to be your parent!"
A little over the top, I've always been a bit dramatic, but that is my true feelings during my observation of the two. Did I tell the father this? No. Of course not. Socially unacceptable.
Anytime, in the last 10 years or so that I have been asked my favorite quote, it has been Tennesse Williams, "Life is all just memories except for this one single moment that goes by so fast you can hardly catch it going." Wow, has that quote proven to be outstanding in my life. We all move through life wanting THINGS, wanting our loved ones to have THINGS, wanting our children to be above the norm so that they can prosper and have many THINGS. But, do we take the time to celebrate the moments that they demonstrate something tiny yet, spectacular! I have learned that we have to watch Roa's every move every minute of every day, so that I can celebrate all the little things that show he is gaining strength, reaches for and manipulates an object after patient trial after trial, communicate his desire and interest to us with a determined gaze or gesture. Take the time, people! Celebrate THIS moment right now!

I'm now off the soapbox. I'm not losing it, don't worry... only seeing a bit more clearly and wanting to share my innermost thoughts. Initially, I wanted to start a blog as a sort of diary and a way to share will all instead of the basic emails and phone conversations. Thanks for listening, hope it makes you think a little.

Roa is tired this morning and a bit cranky. The HBOT was long for him and Daddy today. He is sleeping now after a long 1/2 hour attempt to get him down for the nap. I tried our usual nursing to sleep but his eyes kept popping open or he would startle awake. He didn't want to stop nursing as he has grown to use it as a soother. Bryan got him to sleep by walking and holding him tight.
I chatted in length with the chiropractor who also works with the HBOT team. We are going to have Roa adjusted this afternoon as it has been 3 weeks since his last adjustment and it usually helps him to sleep. We pray that this gives him some relief.

4:39 am - Day 14 - Reality post

It is the wee hours of morning. I have just listened to my baby scream, cry and fuss for over an hour. Up twice tonight with fussing. It is a reality that Bryan and I live.. night after night for 14 months. I do not get a break, I can not run away, I am here and 24/7 -Roa needs me. I write on this blog daily, trying to keep up my spirits and journal with a positive attitude. People don't want to know the gory details. They just want the big picture and to be informed of all that we are trying, the changes we are seeing. But tonight, like every night, I was slapped with the reality that my baby is not like other babies. My baby can not sleep because something in his brain doesn't let him. My husband and I go through life in a foggy reality-tired, drained and asking "why OUR baby?"
We watch other babies in awe- "look at her head control", "he can reach and grasp that toy WHILE he sits", "look at how relaxed his legs are". I taught early childhood special needs for 12 years and I NEVER looked at a child the way I do now. I have my master's degree with a focus on learning through play.... and I have a baby who CAN NOT play. Can not hold a toy and manipulate it, can not sit independently to interact with me. That is my life, day in and out. Waiting, praying , hoping that Roa will SLEEP, that his brain can let his body relax so that new connections can be made and he can learn to have fun and play like all the babies I see around me. People are quick to give advice- to say that all babies sleep poorly sometimes,... maybe it's a milestone coming, maybe it is behavioral and we should let him cry it out, maybe there is a medication we should try, maybe it's teething, maybe it is a muscle spasm tonight. ... The fact is, we don't know and we continue to struggle each night and pray that tomorrow night the melatonin will help or the HBOT will work like it seems to for others or his bath will relax him, or a massage will help.... We will listen to the screams, the crying, the pain he feels... and we will feel it too.

Day 13 - New foods, old sleep issues

We had a mixed night last night. Roa fell asleep at 8:45 pm, stirred a little at 10:15, then slept until 2:30 am. He then cried for the next two hours because he was tired but refused to go to sleep. He finally slept for two more hours and was up for good at 6:30 am. Jen got up and took him down the hall so I could sleep in another hour. By his first therapy session, he was tired and fussy and that held through for the entire hour. Frustrating!

He has not been eating a lot of his own food the past couple of days and is really interested in the food we are eating. We are starting to give him small pieces of our food and he has been handling it pretty well. Previously, he had difficulty manipulating foods inside his mouth and would attempt to swallow chunks that were to large which would lead to gagging and choking. Now he is moving the food around his mouth with his tongue and chewing it completely before swallowing it. That is an exciting improvement.

The afternoon session went a lot better. Roa was not fussy and was content to watch a movie during the session. After the session, we played at the center for a bit before coming home for his nap. Roa likes pushing a shopping cart around the center and watching the other kids on the move. Hopefully, he is learning from them and getting motivated!

This evening, our cousin Jini is coming over to swim with us! Another exciting evening at the Country Inn!

Day 12- Sleep Glorious Sleep!

Not only did Roa sleep straight from 10:20 to 4:10am last night, but he also took two wonderful naps today after each session! I just don't know what to do with all this free time! :)
We like having visitors, but it was great having a day with just me and Roa to settle back into a semi-regular routine of play, naps, meals, etc. I think that getting back to the familiar routine could really help his sleep.
Don't know if I wrote this in the past, but the HBOT sessions make Roa very regular. He has actually had 3 poopy diapers in the chamber! Not such a pleasant atmosphere for Momma to share, but makes for a happy baby!
I'm feeling a bit frustrated today by Roa's lack of rolling. In the playroom of the center, he will turn his little head upside down and around to watch other kids, but just will not roll to get a better view. When he wants a toy by him, he doesn't yet roll to his side to grab at it. On a positive note, since beginning HBOT, Roa enjoys the "rolling game" with me rolling him over and back... so practice, practice, practice!
Well, it is dinner time for Momma, then when Roa wakes, off to the pool! Daddy is on his way tonight! We can't wait to see him!

Day 11- Trying to keep our spirits up

Today was definitely Monday. Roa had a rough night with frequent wake ups which meant little sleep for Momma. Bryan is back at work, so I was on my own to deal with the cranky guy. It is so depressing to have all the other HBOT families I talk with tell me about the awesome sleep their children got after a few HBOT sessions while we still struggle Roa. I'm trying to stay positive and think, "we are half way through....it still can happen for us". We miss our own beds. We miss home.
Today's sessions went well however. Roa actually slept 30 minutes during each session... catching up from last night, I suppose.
Thank you to my sister Kathy, Gene and the boys for the weekend visit. Thanks also to Barb for helping me out today!
On a positive note, Roa is babbling a lot tonight and is very relaxed. His hands are open most of the time now and rarely fisted. He continues to hand weight-bearing on his arms! Roa also tried a couple mini pieces of spaghetti noodle and didn't gag or turn his head to the right to swallow! He is sleeping now, so off to shower and bed I go as well. Gotta catch some shut-eye when I can!

Update of Day 10- Snoozefest

We usually don't post on the weekend, but I just had to report that last night, Roa Joseph Thayer went to sleep for a late afternoon nap at 5:15 and did not stir until 10:30 pm!! He awoke, ate and went back down without a fight until 12:30 when he needed a diaper change. Again,.. he went down without fuss, clawing of sheets etc until he was hungry again at 3:00ish. WOW! Of course, given all that sleep, he was up and at 'em at 4:30 am, but we will not complain!!
Today, Roa is calm, loose, and quiet. Things are changing!

Day 10- 2 weeks down, 2 to go!

We finished our second week of HBOT and are happy to start the weekend! Tonight we plan on taking it easy, swimming in the pool, hot tub time, family walk and relaxing!
Roa had two good sessions today. No sign of sinus issues. He was pretty mellow in the chamber and mainly watched videos and snuggled with Daddy.
Last night we did more videotaping of Roa during play. We will try to post more this weekend for all to see. We are impressed with his open hands and his new ability to reach across midline for a toy. He is bearing weight on his arms without constant complaint. We also see little things that make a world of difference in our lives-like the fact that he can be on a changing table without startling and constant fear. He is also turning his head to the side to look instead of swinging it down and around for a sideways glance. Or, the fact that he has an appetite for foods other than Momma milk! It is the little things like these that make us think,.... hmmm .. there is definitely something to this HBOT business.
Thank you to whoever was kind enough to send Roa a new Elmo video!! He enjoys it during his sessions. Thanks also to friend and family who continue to surprise us with visits, little gifts for Roa, emails, phone calls, and financial blessings! You help to lift us up and keep the Thayers afloat during all of this! God Bless! Jen, Bryan, and Roa Jo

Day 9- Daddy's back in the game!

Roa got to spend today's HBOT sessions with Daddy again! This morning's session was a tough one. Roa decided to rise and shine BRIGHT at 5:00am and didn't go back down except for a 20 minute catnap in Mom's arms before the session. Needless to say, he wouldn't nap in the chamber and was a crab for poor Daddy. He napped for over an hour after therapy.
After this afternoon's session, Roa had some yellowish discharge from his nose. We had the doctor take a peek and it might be the beginnings of a sinus infection. We will have to keep an eye on him tonight and make sure he doesn't run a fever and need to see a doctor for sinus meds. If he does have an infection, we may have to hold off on his HBOT. Cross your fingers!
He is in great spirits though, after the session, and didn't want to go down for a PM nap. He isn't acting like he doesn't feel well. Daddy took him to the pool to wear him out. Roa loves his pool time and we love the workout and strengthening he receives! We have only missed one day at the pool since we began!
Tonight Bryan's cousin, Jini, and her husband Murali, will be babysitting for a couple hours so Mom and Dad can have a date night! Yeah! Roa will enjoy the attention of two more adoring fans! We will enjoy a couple hours away from King Roa! ;)

Day 8- Limp Little Noodle

Today's HBOT sessions have left the boy as loose and relaxed as an be! It was quite amazing seeing him completely ring-sit inside the chamber and reach for the toy in front of him! Today, I gave him his massage and did his stretching in the chamber and it really seemed to work well! We will have to make that part of the routine. I just laid Roa down for his PM nap after he fell asleep in his highchair eating Gerber Cheese puffs like a madman. His appetite was very good the last two days as well.

Daddy is on his way back to Madison tonight. We can't wait to see him! It has been a long few days without Daddy to entertain us!

This afternoon, as we waited for the hotel shuttle van, Roa played with Christopher, an 18 month old brother of a child receiving therapy. It was funny watching Roa (who towers over Christopher and outweighs him by 5lbs) take in everything that Christopher did! They stared at each other and watched every move made until Christopher reached out to give Roa a hug. I was holding Roa up and he proceeded to wrap both his arms AND his legs around the poor kid! I think Roa has been watching Max and Molly (our dogs) wrestle too much. We need to get him around some toddlers! I laughed so hard!

I have been doing some research and talking with parents who have home chambers for treatment. It is pretty interesting that many people are deciding to purchase their own chambers to save money. It sounds like it might be a nice option for the future to consider if we find the benefits for Roa are worth the cost.

Day 7- Running on empty!

Roa has had a couple rough nights of sleep! Down to bed fairly early, but up at 10:30 to midnight, 2:30 to 3:15, 5:15 to 6:00 am!! Mom is running on empty and Roa is a cranky!
When I got to the HBOT center, I talked with the staff about the possiblity of the therapy causing sleeplessness. They said they haven't run into that. We think it still may be the teething, but he still does the constant arm moving in the night, clawing at the sheets and staying awake..... This sleep disorder business is causing some tears and premature graying in Mom and Dad. We are attempting upping his melatonin dose and trying an epsom salt bath per Doctor suggestion... also some teething tablets for the tooth still coming in!
Aunt Ellen is here today with Uncle Bill, who is on business in Milwaukee. Ellen was surprised by Roa's increased head control and open grasping hands! It was nice to hear positive things others are noticing.
Latest observations- Roa is kinda quiet the last two days. Not too much vocalization? Nice head control and great reaching.

Day 6- Almost Perfect!

Roa had 2 great HBOT sessions today! This morning, Momma was a bit nerved up, but Roa is now an old pro- he fussed during the pressurization, but otherwise settled in to watch his Underwater Adventure video! This afternoon, Roa had some food allergy bloodwork done and was a champ during the blood draw. Auntie Vickie helped us out last night and today and she took him in for the blood draw. Nice break for Mom! After that we entered the chamber he ate and fell asleep! YEAH!! Mom even dosed off a bit!
The blood work results will be back in 2 weeks or so. Dr. Van Dyke thought further testing to rule out food allergies for the reflux, constipation, sleeping issues will be helpful. Our fingers are crossed!
Now we are off to the pool for some aquatic therapy time and relaxation until tomorrow's adventure!
Daddy is back to work today and much missed here in Madtown! But, we had a nice weekend visiting the Children's Museum, going for walks, and visiting with Cousins Jini and Murali!

Day 5- He's just warmin' up!

Things went better today for Daddy and Roa in the chamber. The technician seems to have found the right sequence of raising the chamber pressure, so Roa doesn't react so much to the ear popping. Roa and Daddy get alot of play time in the chamber as he doesn't seem to want to nap. Bryan has even mastered a couple diaper changes inside!
We brought the hood home for the weekend to give it some practice. Who knows...
After the morning session today, Jennifer's friend Gerri, who teaches in WI Dells, stopped by the hotel and bought us lunch! So nice to visit with her! She joined us at the center to see Roa's final HBOT session of the week.
Bryan leaves Sunday night to head back to the world of work. Mommy is going to have to face her fears and park herself in that chamber Monday through Wednesday until Bryan returns!
Have a great weekend everyone!
New observations of Roa- Continues to want to walk around EVERYWHERE with us holding his arms. Continues to enjoy our nightly pool-therapy session and is a MADMAN heading down the waterslide with Momma! Handles practice with rolling over on the bed and actually laughs while doing it instead of being angry! :)