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.