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Dominik R
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Friday, April 17, 2015

Wow, it has been over a year since we last posted about our sweet Dominik!!

Well, I won't bore you with too many details but I will astound you with the great things that have happened!!

Dominik is growing and thriving in amazing ways!  He daily impresses us, as well as his many therapists, with all his new little tricks!!  He continues to advance in his movements as well as his alertness and attentiveness when he is learning!  He is so tolerant and really loves to learn!!

Going back a few months ...

In June, Peter was offered a new job in Denver, Colorado.  So we uprooted and moved to Colorado and boy was it a GREAT move!!!  God is so good and HE had/ has a great plan for us here!!!

You see, Colorado is a state that prides itself on it's help for the Medically Fragile Children!  We are receiving lots of services for Dominik (we have 9 different therapists who visit), financial help with medical necessities, and this mamma get's paid to be a mom!!!  YES! You read that right!  I am getting paid to care for my son!!!  Like I said, God is so good, and I'm not even done yet!!

When we arrived in CO, we had no where to live!  Rental housing here is snatched up within hours of it being listed, so we had to be here, in town, to find a rental!  We finally found a fantastic house (not without it's issues, of course) with a massive backyard and in an amazing neighborhood!!!  We landed next to some amazing neighbors, who love the Lord, home school their kids and their daughter is my oldest's age!!  Could it have been any more perfect!!!  They are so understanding of our family situation, and have been there to help us out when we needed assistance!!  The Lord has really blessed our family!!

The job that moved us out here was really just a mode of transportation for Peter.  He worked for them for a short while and was then offered a job that was much closer to home and one that was more what he wanted to do!  He is absolutely loving his job, the company and the people that he works for and with!  His stresses are so much lower and his health is so much better ... Praise the Lord!!!

Back to Dominik ...

Little Man has a whole new family of therapists, who adore him!!  He is receiving schooling through the school year which consists of a Physical Therapist, Occupational Therapist, Hearing specialist, Speech therapy, Vision therapy and a teacher!  We then receive Music Therapy and Massage Therapy through another group and additional PT through a 3rd group!  We also have an ABM therapist who is right in our back yard (relatively speaking - he is about 45 minutes away, a far cry from our usual 6 hour trips!) They all work together really well and have great respect for each other, which is key in my house!!

Dominik is learning to use switches and will be receiving a new head piece for his wheelchair that will assist with the use of these choice making switches!   He LOVES his music therapy and the girls really enjoy doing it with him!  They learn about new instruments and love to experiment with Dominik and he is loving all the different sounds!

Dominik's overall health is quite good!  He did have a short hospital stay a few weeks back due to his apnea and some respiratory issues.  He is on the up hill climb and doing well!  We are well established with our new pediatrician, who is located IN the Children's Hospital, and works in the Special Care Clinic. This is a special clinic for special needs children and their siblings ... again AMAZING!!!!

How's the Family ...

The girls are adjusting well, missing home of course, but they are making friends, really loving the area and all that it offers!  They are involved in a great soccer club (with daddy coaching all 3 girls) and are really enjoying it!  All 3 girls are a tremendous help with Dominik, however, Jaiden has really taken on the additional responsibilities of helping with him!  She is amazing!!

Peter is enjoying soccer with the girls, building a great reputation at work and really loving being here!  The area is amazing and has so much to offer our entire family!!

I am adjusting as well!  It has taken me a bit longer, but I am thankful to some visits from my family and friends that has pushed me through some tough times!  I am adjusting to homeschooling the girls, although I think it took me this whole year to adjust, but we will be ready for next year!!  Dominik's on going therapies and needs are overwhelming but yet so good for him!  I have to say about 50% of the time I handle it well ... the other 50% is a bit more rough, but we just take it one day at a time!!

God is good ALL the time, and we trust that He will continue to get us through our trials, struggles and many blessings!!!

Thank you all for your continued prayers, even without the updates!!!




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Monday, March 31, 2014

Hello to all my faithful prayer warriors!

March has been a long and exciting month!

We started our month out with a week long vacation with Grammie and Grampie at Eagle Crest!  We were so very blessed with the most amazing weather!  It was warm and sunny every day!  We went for walks and sissy's rode their bikes!!!  Everyone learned to play Pickle Ball too!  It was so nice to rest and relax for a week!

At the end of the week, Daddy, Mommy and I went up to Portland to visit with my Neurologist as well as a Shriner's visit.  We are still battling my seizure medication ... but mommy can tell you more in her journal!  It was sure a fun day with mommy and daddy though!!

I just got to spend a whole week with my sisters again, they were on Spring Break.  It was wonderful to have them home with me!  They are such fun to play with!

I am showing slow improvements, but they are improvements!!  I got a new Switch that I am playing with too!  Mommy says the idea is to help me learn to trigger things for a reaction, that will further my ability to communicate!  It is fun to play with!  Right now, it is hooked up to music and a fan!  I love music!!

OH, and some exciting news!!!  We are getting ready for our 4th Annual Benefit Yard Sale!  I am so excited!  Mommy and Daddy are starting to collect items for the garage sale ... if you have anything let mommy know!  They are collecting items from everywhere ... even Portland!!!!!

Please be praying about the garage sale, this year needs to be a great year!!!  My account is starting to dwindle (so mommy says) :-)

Mommy has also started selling Thirty-One bags to help with my training and medical expenses!!!  She is having fun and doing a great job! (I'll make sure she puts the link to her site on her journal!!)

My Praise Reports:

   My seizures seem to be responding really well to the new medication and my behavior is improving

   I am working my right side more and more 

   My scoliosis is really bad but I'm proving that it is becoming flexible!!

My Prayer Requests:

   My new seizure meds are extremely expensive, and as I said, money is running low in my account

   My scoliosis is bad enough that we might be looking at surgery down the road (read mommy's journal)

   Please begin praying for the benefit garage sale!  Mommy is tired and this is a sale that takes months of collecting, a full day of setting up and much help!  Pray that mommy gets the help and we have donations galore!!!! :-)

   Please continue to pray that my night time sleeping improves ... I am still up 3 or 4 times a night and some times it's for an hour or 2. :-(

   Thank you all, so much, for your constant support and prayers!  God is so good!!

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Thursday, February 27, 2014

Hi to all my friends!

I have a great praise report!!!  Mommy and Daddy decided to change my seizure medication and guess what??  My Central Apnea issues are going away! It has been over 1 month since my last apneic episode.  Mom and dad are very excited for this!

Here is my quick update for you:

We made a round trip visit to a special doctor at UCSF, he helped me get started on a new medication.  It is having some negative side effects though ... mommy says we need to give it more time, because right now I am on 3 different medications.

The doctor was really great!  He is working with mom and dad by email so we can get my meds right!

I have been in my own bed for about 2 weeks now!  I LOVE my own bed!!  It is really comfortable and it's my very own!  I had a few really good nights, where I slept til 5AM.  Daddy was really excited ... alas, it didn't last long!  I went back to getting up for hours at a time every night!  Mommy will update you more on that in her Journal.  Don't forget to check it out!

I have been doing well on my moving!  My scoliosis is becoming very flexible and I'm able to do more to the right!  I also have been using my mouth more and more!  I love apples and carrots!  Mommy wants to get me some mango to try!  I am really enjoying being able to control my food!  Mom puts it in my hand and I can bring it to my mouth when I want too!  My speech ladies are really excited too!

I am really excited for the up coming week ... we get to go on a vacation!  I can't wait!! :-)

Thank you all for your continued support and prayers ... keep mommy and daddy in your prayers too!  I know they are very tired and struggling with some decisions!


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Monday, January 13, 2014

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Monday, January 13, 2014

Happy New Year!!!

I got to enjoy 2 weeks with my sisters, it was a lot of fun!  My Daddy was home for a week too and I loved that ... we spent a lot of time together!!

Not much has happened since my last post!  Mommy and Daddy are still working on my medication, but mommy is very pleased with the change, because my episodes are slowing down!!  The only concern is that my seizures are not yet responding to my new medication, although it takes 2 months to get in my body!  So we have a little bit longer before we should see a change!  Keep praying!!

I still enjoy my night time, fussy time with daddy!  He's a trooper, but please pray that I start sleeping better ... it would be wonderful for my mommy and daddy!!

We head down to see Ms. Marcy this weekend and I will even get to have 2 sessions with some of the students!  I am very excited for them to see my progress!  This morning I rolled over onto my tummy ... this isn't really new, I have been doing it for a while!  BUT what is new and very exciting is that I rolled to my tummy to my RIGHT!!!!!  I am very left ... everything is left!  I look to the left almost all the time, my scoliosis is conforming to my "left facing" curve, I do almost everything with my left hand too.  So for me to turn over to my right, I had to go completely against my scoliosis and my favorite head position!

Mommy and Daddy were so very excited!!!!!  Ms. Marcy calls that flexible scoliosis!!!

Sadly, this is sick season, so I don't see many of my therapists during this season!  Mommy and I don't go out much either ... it is too dangerous for me!  I have to stay healthy and keep my immune system strong!!

I got some really fun toys for Christmas and my birthday ... I really like them!  They work well in the car and keep me occupied and happy during our long trips!

Thank you all for your prayers and for your continuted support!  

Please keep praying that funding continues for me to stay in ABM and that mommy and daddy's fundraisers for this year go well ... money is running low for my training.

Thank you all and I love you all very much!!

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Tuesday, November 26, 2013

Hi family and friends!!

It sure has been an exciting couple of weeks!!  I have been home with mom and dad for about 6 weeks since being diagnosed with Central Apnea.  It has been a roller coaster for mommy and daddy!!!

I did really good for a while, Grammy came over to learn the ins and outs of how to care for me ... but my brain decided to do really well while Grammy was here! :-)  I didn't have an episode for 6 days!  Mommy and daddy were pretty excited and felt like I might be improving ... I wasn't though, I was just taking a break!  It is very exhausting to have these episodes!

However, when mommy and daddy increased my seizure medication, after discussing with my neurologist the potential of this medication possibly participating in my apneic episodes ... they felt they hit the nail on the head!  

It takes 4-7 days for the medication to get into my system!  After they increased my medication 4 days later, I had 6 episodes in 24 hours, and one of those episodes lasted almost 4 minutes!!!  That's when my daddy said we were done!  Yes, I did not breath for almost 4 minutes ... mommy and daddy handle this very well, but I know that they are scared too!

So I'm excited to say, my neurologist got right on a new medication and it arrives tomorrow ... with my Grammy and Grampy who are coming to visit!  I am very excited!

This medication will take 8 weeks to build up in my system, but I will be sure to let you all know how I am doing in a few weeks!!

Be sure to check out mommies blog ... she will update you on my daddy!!

Thank you all for your support and love!

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