Monday, August 31, 2009

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..........

Sunday, August 30, 2009

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".

Saturday, August 29, 2009

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! :)

Thursday, August 27, 2009

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.

Wednesday, August 26, 2009

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!

Tuesday, August 25, 2009

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!

Monday, August 24, 2009

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 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!

Saturday, August 22, 2009

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!

Friday, August 21, 2009

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

Thursday, August 20, 2009

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! ;)

Wednesday, August 19, 2009

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.

Tuesday, August 18, 2009

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.

Monday, August 17, 2009

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!

Friday, August 14, 2009

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! :)

Thursday, August 13, 2009

Day Four- Forging Forward!

Roa went into the chamber today with Daddy and had a much better day! Bryan said that he fussed during the pressurization, both up and down, but did not through a major fit about it as he has done in the past days! YEAH!! They didn't even have to rely on the DVD player to keep him calm, but Roa enjoyed playing with Daddy in the chamber. We are moving forward, people!
Today, we had the pleasure of finally meeting Heather, Gavin, Jackson, and Carson, the family I met through It was so nice to get the boys together to meet in person! Heather and I chatted about Carson and Roa's CP likes and differences. It is very positive to talk to a mom who saw such nice things after HBOT. Carson got out of the chamber a few weeks into it and rolled around like crazy! It is great to touch base with a Mom whose little guy is just a few months older than Roa to see the developmental changes that occur.
We are going to attempt to post a video or two now, so check that out in the video corner. We cross our fingers that we can get it to work!
New changes in Roa noted- He is a much calmer baby in the evenings. Bryan just put him down for a nap and he didn't fuss! He is exploring new sounds and vocalizations. In the pool we were going through his aquatic routine and he let us stretch his arms our straight in front of him and kicked his feet! He is sitting forward more in play with limited arching back to lean on us. He is holding things in both hands.

Wednesday, August 12, 2009

Day 3- Teething and Tough!

Day 3 of HBOT and more teething and crying. Roa is a bit irritable today, and drooling quite a bit. That number 8 tooth is coming in. He did not nap after this mornings session, so hopefully he is sleeping in the chamber with Daddy as we speak!
This morning's session went a little better. Bryan is going in with Roa, Mom is trying hard to RELAX her nerves in the waiting area. We gave Roa benadryl and motrin for the pressure and his teething issues and that seemed to help this AM. Hopefully it will continue to help him this PM session. Roa goes in every day at 8:30am and 2:00pm.
Last night, Jen had a visit from Barb and Sue, SPED teacher friends here for a conference! Nice to catch up with them!
Today, Jennifer's sister, Vickie and her family were on their way to the WI State Fair, so they met us at the Madison Farmer's Market! It was great to get a hug from family and words of encouragement. We got emails from Jennifer (Miranda's mom from the great HBOT video), Ellen. Daisy, and Lenore today and a phone call from Heather (another HBOT mom) so our spirits are up with all the support! Thank you guys!
They say it will get better and Roa will not mind it as the week goes by. We gave up on the hood and Dave the technician gave us a oxygen mask to try and hold by Roa's face instead. We will see how it goes.
Keep those prayers a coming!

Tuesday, August 11, 2009

Blog issues

Hey all!
Before I go to bed, I just wanted to say that some people are having issues posting comments. You need to set up a google account before will let you post. It is FREE and easy to join...just email address and! a password are needed. Otherwise, keep sending those encouraging messages to

Day 2 Details

After a rough 2nd run Monday afternoon, Bryan decided to go in with Roa today. Roa is having a lot of issues with the pressurization, both up and down during the session. He is teething right now, so we think he might be very sensitive to the process. In the middle of the session, Roa is watching DVDs, doing some playing with toys, but also alot if fussiness about being in the chamber. He does not like having the "hood" on his head and cries when it is in place! Very hard on Daddy in the chamber and Momma watching from the outside!!, they tell us it will get better as he gets used to it. We talked with Nurse Ann and she instructed us to try Motrin and Benedryl for Roa tomorrow. We will let you know how it goes!
New things we are seeing.... Bryan's lower back pain has gone away! Roa is babbling a bit more and slept well for his midday nap, eating a bit more solids with greater ease, and seems a bit more content after the sessions at the hotel.

Monday, August 10, 2009

Day One of HBOT!

We met this morning with Dr Van Dyke of the WI HBOT center and talked a LONG time with him about Roa and his development. Dr. Van Dyke is very knowledgeable about different supplements, dietary changes, etc. that we can attempt with Roa to help his motor development. We were very overwhelmed with all the info! We then rushed into our first HBOT session as Roa was cranky and ready to eat and nap!
Roa did not like the "hood" he is supposed to wear and flipped out when I tried to put it on him, so... we will try next time. He also had some issues with the change of pressure with the ear popping, as did I, but the attendant running our "dive" quickly lowered the pressure and things got better. Roa slept while breastfeeding through most of the hour. Momma just needs to learn to calm her nerves and adjust to the small space and warmth of the chamber! We have another session at 3:30. Say a prayer for us!
We will try and post pics and video tonight!

Thursday, August 6, 2009

HBOT sucess story to share

Watch this from youtube if you are interested. This is a video from one of the moms I have been corresponding with via Very powerful stuff!

Love and support

Yesterday, we had a visit from my sisters Ellen and Vickie. They were great help and played with Roa while I met with his service coordinator and occupational therapist to discuss his plan for the rest of this IFSP term. We also talked about funding for insurance copays and other adaptive supports and equipment we might need for Roa in the future. Upbelievable that being "middle-class" is truly a curse in our great country when it comes to government support... but, I don't want to get into politics!
After the meeting, it was nice to catch up with my sisters while we worked on packing up a portion of the Thayers lives for our new home-away-from-home in Madison.
When Bryan got home, we were shocked to see him carrying in 2 huge gifts from the API ANGELS!! :) Some of Bryan's coworkers put together care packages of homemade frozen dinner, snacks, books, toys, magazines, etc. for the Thayer clans venture! Thank you so much, you wonderful people! Both Bryan and I shed a few tears as we read the nice card! (although Bryan wouldn't admit that!) It is very nice for others to recognize the stress that is added to a family's life with this diagnosis and all the organization of therapies to work towards bettering Roa's life.
Roa's latest accomplishments- getting used to walking, a bit more, outside with his new AFOs, kicking his legs and moving his arms for movement through the pool, attempting some graham cracker pieces for a snack.

Wednesday, August 5, 2009

The Countdown Begins!

Only 6 days until Roa has his very first session of Hyperbaric Oxygen Therapy! Bryan and I are both nervous and excited! Roa doesn't have a clue what is in store for him! :) The rest of the week, we are ironing out the details of our month away from home. With API giving Bryan the chance to work from Madison, we have now added Christine, Lindsay, and Ellen to the dog duty list. Thank you guys! I've started some of the "packing-pile-up" and realize our Pathfinder isn't as big as we thought!
Today we have Roa's IFSP (individual family service plan) review with the Birth to 2 staff. We will go over Roa's therapy goals, discuss where he is at, and plan for where we want to go from here. We are glad that we get to do this before HBOT so we can get a clear picture of his current development and see what HBOT improves.
Yesterday, I got a chance at Roa's nap time to chat with Heather, mom to Carson who has had HBOT in Madison. Heather and her 3 boys will be visiting us at the center. I'm excited to meet them! Heather has seen quite a few nice changes in Carson since his therapy sessions including eye muscular strengthening, better sleep patterns, improved eating, rolling and army crawling. Carson's twin brother, Jackson had one session of HBOT and afterwards, stopped his toe-walking and tight shoulders! Very exciting stuff! Thanks for sharing, Heather! :)
Duty calls, nap time is over!

Monday, August 3, 2009

Preparing for Sunday's trip to Madison!

Hi all!
I'm taking a break from organizing our Madison plans to drop a line on Roa's blog! Feeling a bit foggy this morning as poor Roa was up again frequently in the night and for a couple wee morning hours. I can't believe that Roa is 13 months and I have NEVER had a full night sleep yet! 3 hours in a row is about all we get around here.
We think that his legs are bothering him a bit more at night as he tries to relax due to his new AFOs. He is napping now... as should I be, but so much to do!
Other things new: Check out the new video of Roa playing with his balloons! We are going to try and get some more great footage of Roa this week at home before we leave for Madison to compare his strength and skills "before and after" Hyperbaric Oxygen therapy.
Roa's new skills noticed this week: improved head control while looking in the animals pens at the fair!, sliding out of his stroller to get down to the ground, crouching down and forward to get in all-fours position, making a "raspberries"/motor sound when playing with a car, continuing to drive Daddy crazy by constant wanting to walk around at church! :)

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Mom and Me

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