ReachOutGiving

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October 28, 2013

 I will start this update with a few weeks ago and we will move forward! 

Earlier in October, we took Dominik to see a Developmental Optometrist. They not only look at vision but the brains involvement as well.  When we saw the doctor Dominik was very alert and attentive. Unfortunately, our thoughts were confirmed, in a dark room with his eye’s dilated, she shined a bright halogen light straight into his eyes, there was absolutely no reaction either from Dominik or his pupils.  He didn’t blink or avoid the light at all.  He is completely visually impaired. 

The doctor noted that he responds well to sound and said that she feels we should be putting our efforts into improving his hearing and touch … the sense he has that are the most heightened for him!  

You may ask; was this a disappointment?  It is never easy to hear that things are deteriorating, although, it brings excitement to me to know that my son’s ears have improved so much that he can track sound as well as he does!  People question us when we say he can’t see, because he tracks sound so well!! 

This brings us to our next adventure!  Monday, October 14^th, Dominik decided our lives were not adventurous enough and so he would make it more of a roller coaster!  About 9 AM he stopped breathing!  I’ll make this a short story for you …

We ended up in the ER with a giggling little monkey, however, when the doctor came in to visit with us, Dominik stopped breathing again.  He was immediately sedated and intubated.  He and I were flown up to Doernbecher Children’s Hospital that evening, Peter drove up and met us!  Dominik was breathing on his own, but with a ventilator to help if he didn’t breathe deep enough.  Tuesday morning they decided he was holding his own and removed the tubes, however, during the initial intubation process he had 3 different tubes stuck down his throat so he was extremely swollen.  Enough so, that his breathing was extremely labored and they considered re-intubating him because he wasn’t getting enough oxygen.  We decided, as a team, to try steroids as well as Heliox (a mixture of O2 and Helium – makes it lighter and easier to breath in).  It worked!!!  His work of breathing decreased and he was doing it on his own!

The doctors had him on a high flow cannula, which was pushing air in at a rate of 8 with little oxygen.  We slowly weaned him off this over the course of 4 days.  The goal was to get him to no flow and no oxygen! 

During our stay the goal was to find out what was causing these apneic spells!  Obviously an answer was needed to make sure we could avoid these in the future and go home safely!  While at Doernbecher many tests were performed: CT scan to eliminate brain bleeds or swelling, EKG and Echo to ensure the heart was not over working or had become enlarged due to over working, EEG to see if silent seizures were the cause, and a sleep study to see if the need for O2 remained and if more apneic events were happening.  The results? His brain looks great (at least the same as last MRI), Dom’s heart is beautiful, strong and not over working, Seizures are NOT the cause and the sleep study showed many apneic events that are minor, but oxygen is required!

As you can image Peter and I were crushed … There is no answer for these events!!  Which leads to what?  His brain!  There is a problem in the wiring of his brain stem, the one part of the brain that we were originally told had the most development!  L  So where does this leave us?

We are home, on a whole lot of monitors, a full liter of oxygen 24 hours a day and daddy sleeping on the couch next to his son!  Accompanying all of this is a whole lot of fear.  Living with the fear of possibly waking up to a loss … not a life that either Peter or I dreamed of.  It is a daily fear of the unknown, a fear that will never go away!  No one should ever have to live with this kind of fear; fears that will take a daily conversation with God to give it back to Him!!

Since coming home Dominik has done well.  He had one spell shortly after we left the hospital, which Peter got to see first hand with no hospital support!  I think it scared us both!  He has had a couple of short spells that he has corrected pretty quickly!  He had a long one yesterday, while we were at home, so I was the most prepared!  Suction, high O2, and our BVM … He and I, with a lot of talking to God, managed it ok!

I hate it, I really really hate it!  I wish more then anything we could correct this and it would stop!  I hate the fear, I hate all the cords and tubes and beeping, I hate all the stuff I have to carry with me just to go into the store and I hate the idea of loosing my son!  I HATE IT ALL!!!!!!  BUT, I would do it all over for the time I get with my son!  My heart hurts, but I serve a sovereign, faithful, Miracle working God, and I have faith and hope that God is not done with my Dominik yet!

I think you all for your faithful prayers and support!!  It is so very important for us right now and it daily gets up through our challenges!!

So some EXCITING news for you all .. to end out visit!!  I won’t bore you with the hub-ub of the flat tire or the van damaging collision with a deer … but we got Dominik a new bed!!  I hope to get you all a picture soon!  It is a critical care crib, the exact one that he was in while in the PICU at Doernbecher!  This amazing bed will allow us to raise and lower the head of the bed so Dominik can sleep in a crib and still be elevated like he needs!!!  Yay … I get my living room floor back!!!  However, this crib did not come with a mattress, please pray that we are able to find a mattress that will flex as needed and be safe for Dominik!

Tonight, Peter has his first ABM seminar with family and friends!  He is really excited … as well as struggling a bit!  We have to make a final decision on whether he will attend the 3^rd segment of his ABM training inSan Rafael, in a week.  At this point it looks like the Lord is closing the doors for this time.  This does not completely close ABM for Peter, as he can continue, but will just need to go back and complete segment 3 at a later date!  Please pray that the Lord gives us clear direction as well as a peace about His decision!  Due to Dominik’s recent events, we feel that ABM is critical for Dom and his growth and learning!  We covet your prayers as we have some tough decisions coming up!

Thank you all, again, for your faithful prayers and support!  God is using Dominik to touch lives daily and we are so privileged to be a part of it!

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September 13, 2013

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April 9, 2013

Wow am I exhausted.  The last month has been not only tiring but very emotionally draining!

As many of you know, your life changes as different events in your life take place.  When you get married, you enter into the world of married couples, building new friendships and meeting new couples!  Then comes the life of children … again you branch off and build friends with families with kids!  Well, when you have a special needs child you enter into a world of complete un-known’s, but a new world non-the-less.  A world where no one survives without passing on info about the cool new car seat you just purchased and love, or the switch in medication you did that is working and might be beneficial for another little one, or how to blend this food or that.  Obviously, a world of building new friendships with other families with special needs kids. 

The difference between the special needs world and all the other “normal” worlds is that this world becomes a community.  This is a community of an emence amount of joy, a joy, that I dare say, the normal world will never understand!! A joy that is found daily in the smallest tokens, a sound, a movement or a smile!  However, in this special community is a pain that again, the normal world will never understand!  The pain of hearing a new devastating diagnosis, seizures are getting worse, there is no hope, watching doctors giving up, or going through the death of a child!  Not one of these is an uncommon event in this special community.

Since Dominik’s birth we have experienced all of these, unfortunately more then once. The past 3 weeks have been no different.  The Friday before Easter we received devastating news that a special family friend lost their 8 year old son. (we had been visiting with the family prior to this, so we knew it was coming)  He had been back and forth to Doernbecher’s and we had the privilege of getting to visit with them while we were there for Dom’s MRI.  Isaak had a rare syndrome that there is no cure for.  He got sick from this seasons virus and through different medications and events exacerbating pre-existing issues he lost his battle (3 weeks from start to finish).  Visiting with this mother through this event was another simple life changing event for me … realizing that there is no “for sure” with our little one!  Talking about the trials she was facing all the way up to calling a photographer for final family photos … many times I felt like my heart had come out of my chest and been run over by a semi truck!  I am not sure I have ever felt pain like that! 

For Peter and I, this is the 3^rd precious little one that we have lost in the 2 years we have had Dominik.  This one was much closer to home and really affected both Peter and I.  We realized the value of life when our little one was fighting for his own … however, this has helped to reinforce rules we have put in place for our son!  I feel confident in my choices regardless of what other think or feel!  So far it’s working … Dominik missed both nasty stands of virus this year (even though all 3 sisters got it twice)!  I feel so very blessed!!!!!!

Ok, on to some more encouraging news!  Dominik’s MRI!!  It was an interesting visit … not much information other then yes, there might have been a little white matter loss between the 2 year MRI and this last one!  HOWEVER, Dominik is continuing to do amazing things, so we are not concerned at all!  Our new neurologist wants to pursue the thought of a genetic defect.  This will do nothing but help us to determine what might come next!  The 2 genetic defects that he is specifically feeling this might fall into are extremely rare.  I can’t remember the names, but one of them is found 1 in 10 million people and the other is 1 in 30 million people.  So we won’t get much info out of this as it is very rare … but it might help us to gain information on his current seizure activity as well as what to expect in the future!  We told him we are up for the testing … until it becomes invasive.  At this point it’s all in blood work!

Speaking of seizures, Dominik’s are becoming stronger and longer.  We can’t tell if they are more frequent because the doctor told us he had a lot in the originally EEG.  During the EEG he was asleep so there were only a few that he physically reacted too, we can say that he is physically reacting to far more at this point.  He is not regressing in his behavior or in his learning so we don’t feel that medication is needed.  We are looking into adjusting his diet to help with them and hope that this might in turn start controlling them better!

We have done quite a bit of traveling over the last couple months and will continue to over the next few.  It seems that all of our studies, Shriner’s visits and therapy have all come together in the same few months this year!  The girls have traveled with us on a few of them and really done well as well as enjoyed the trips!  When they are home, they are with my mom and do well!  They have adjusted to the traveling life of mommy and daddy very well!  When we are home, we try to make sure they get a lot of time!  They are in both soccer and swimming right now … they LOVE it!!!

I am doing ok.  I have my daily struggles, and some days I feel like I spend more time in prayer then I do actually getting what I’m praying about done.  I don’t complain about that, because it’s time with the Lord.  I struggle with the daily things … maintaining my house is hard, because I feel I fall behind when I spend a day on blending research, seizure diet research, funding research or financial paperwork!  Some days we spend the entire day in the car between therapy, appointments, back and forth to school, soccer and swimming … so little to nothing gets done at home!!  We are slowly making improvements a room at a time and that is helping … but by slowly I mean a snail would probably get it done faster! J

Prayer Requests:

**Peter and I are both struggling with our weight.  It is discouraging to not have the extra time to invest in a good workout, which in turn sets in depression and eating … Wow, what a circle!!!  Please pray that the Lord will show us time that He opens up for us to get that in, Pray we use that time wisely and pray we don’t allow the discouragement of constant “on the go” eating (snacks in the car) to drag us down! Pray for self control!!

**Pray that I am able to stay focused during the day as I try to nail down blending foods and the seizure diets on top of all the other paperwork I have to get done.

**Pray that we use our time with our girls wisely and that the Lord would bless our time together to help our children grow to love Him more every day!

Thank you all for your love and support!!  Thank you most for your continued prayers!!

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January 2, 2013

Wow, it's been a while!  Some days I think life gets me and it just doesn't let go!

It's been a tough few weeks as well as weeks full of blessings! (I'm skipping over November because Dom updated, but I can't remember anything that needed to be passed on!)

We started the month out with a visit down south.  Dominik did great as usual!  Aunt Bonnie took all of us girls to see the Nutcracker ... wow, what an amazing theater and a very neat experience for us!

During our last visit to see Ms. Deb (Eureka - speech Path and ABM), she really encouraged us to get some real food into Dominik via his tube.  So we ordered a blending book for tube fed babies!  We received it over the break and I hope to dive into it and get some blending started soon!  It will be a slow process of introducing foods, but some we know are good because Dom has taken them by mouth!  He is still doing ok at eating by mouth. Very good communication when he wants to eat or doesn't!  He is doing well!

We recently had our trip to Shriner's for Dominik's first wheelchair ... boy was that a rush of emotions!  There is only so much planning you can do when it comes to these changes ... and some days are just full of changes and challenges!!!  When this first came on radar for us there were many questions ... our house, our stairs, our vehicles, oh man, oh man, oh man!!!!

Our house is a split level in which you must climb starts to get to the front door or the main level!  Dominik is small and so easily carried, however, his chair is not!  It doesn't fold down and it's very heavy!!!  So this mama is going to be getting workouts getting his chair up and down the stairs!!!

With the idea behind this wheelchair being the scoliosis that is developing, obviously the more time he is in it the better the results ... does that mean he will live in it?  NO!  He spend a lot of time on the floor playing, but with the amount of time we spend in our car (some days I feel like I live in it!!!), we felt it might be important to look into converting our van or looking at custom car seats   We were excited to learn that although expensive, it is not nearly as costly as we thought, to convert out van!  We will get a hand held ramp that we have to set up and take down ourselves (vs. the automatic setup that is a button push) and we can get plates put into the car to strap his wheelchair too!  It will cost us under $1500 to get both of these things completed!  I'm dreading the expense as this is up front and not something we can make payments on ... but thrilled to know that for our long trips Dominik will be in a position that is helping him!!

Following our appointment with Shriner's we met with a neurologist ... not an appointment I was thrilled about because I knew the answer I was going to get ... but still the more information we have the better for us all!  The bad new ... Dominik is having seizures!  The good news ... no meds needed at this time!  The scary part of this all is one more thing for mommy! (Just what I needed, right!?!?)  Watch him!  We need to be watching for things ... are they becoming more frequent? Are they coming in clusters? Are they getting longer?  These are all way bad things!  One thing our neurologist said was that he doesn't feel, considering Dominik's condition, that Dom would survive a 1 minute seizure. The other difficult part of this is the medication that is given for most seizure issues is a respiratory suppression med.  This is way bad for Dominik.  The last time he had one of these types of meds he completely stopped breathing!  Not something I intend on reliving!!  So we are praying that we can keep these at bay ... we plan to introduce a diet that has been suggested!  We'll keep you up on this idea!

With the new year starting you hear the word "new years resolutions" ... I have literally thousands of things I hope to be able to do!  I sit at my computer with my budget paperwork in front of me, medical bills pilled next to it, the months menu to make (with calorie counts for mommy and daddy's dreams), the new things I hope to get into the girls routines just under the menu stack, the year calendar of trips for Dominik and Peter as well as the fundraising list for the year for both boys again!  Wow, exhausted just reading it!  

It's been almost 2 years and boy is this wearing on me ... it's not a wearing down that a weeks vacation can replenish. The constant on the go trying to keep up with my girls and give them the time I so desperately desire to give them as well as keeping up with Dominik's continued care at home with 3 or 4 people in and out of our house each week or appointment after appointment!  I have been blessed with some friends who have taken my kids a couple times as well as included me in things that have forced me to get out of my house and enjoy some me time!

Sleepless nights continue with Dominik up 3-5 times a night, continued trials with feeding and trying to get it all figured out and no 2 hours uninterrupted by some alarm telling me it's time to do something!  I pray that these trials come to an end soon and we start to see both of these start to improve!

As I sit here and type this, my precious little man is laying behind me giggling at a monkey that is talking to him!  What a beautiful sound to hear coming from him!  I am daily amazed at his joy for life and his happiness ... he is such a happy boy!  God is so good and carry's us through our days so faithfully!  I can't imagine going through something like this without the Lord to carry me during my darkest struggles!  Not only that ... but the Lord truly blessed me with the most precious husband imaginable!  I could not get through my days without his support, understanding and love!  Thank you Peter!  You amaze me daily!!!

Thank you all for your continued support and love!  You are making miracles happen through your faithful prayers!

October 2, 2012

So I'm finally taking the time to write on a good day!  Perhaps it's because I was in the shower when Dominik had his struggles this morning or because it has become the "norm" in our home and is a little more easy to understand and handle!

I know that Dom updated on our recent trips so I will skip that part! :-)  I am excited about how Dominik is doing although struggling a bit with his rotation and his spine.  Shriner's said that there is no way to stop scoliosis ... so do I just sit back and let it run it's course?

My mom was able to go to Shriner's with me this last trip.  On our way up we had some great conversations.  One of my biggest fears is decisions regarding Dom.  In ABM we are encouraged to avoid forcing the body to do something until it can do it.  I.E. we don't sit Dominik up ... but we are teaching him the ability to sit himself up!  Once he gets that motion and ability he will sit up!  With that in mind, splits, braces and seating systems etc. are all discouraged.  So where is the balance??  How do I know when it's time to use "modern medicine" along side the alternative program we use?

I have seen such amazing things come from ABM and I am so tickled that Dominik will be able to get many more lessons very soon!  We are working hard to raise money for Peter, who plans to start the process of getting his certification to do ABM this next May!!  I am so excited and I know Peter is too!  So Dominik will get more lessons from daddy ... but will we see improvements faster?  I am so pleased with ABM and what we have seen our son do!!!

After talking this out with my mom it was amazing how the Lord just orchestrated it all for us!  I went into the doctors fearing a battle was in the making!  I didn't want a brace for Dominik because of the scoliosis issue ... what a blessing it was to walk out knowing that is a last resort!!!  The Lord protected me in that one and is guiding my steps in all decisions!!!!  Thank you Lord!

Grammie and Grampie are headed out this next weekend for their annual and much needed and deserved trip away!  So we are on our own for a while ... but what a blessing it has been to have them be there to help out in so many ways!!!  Have an amazing trip and I pray the Lord blesses your time 10 fold for your sacrifice for our family!!!

We are entering sick season ... and it has already hit us hard!  Dominik was the first sick, although he is on the up hill climb and has handled it like a rock start!  Jaiden and Jordyn have a bit of a head cold and those are what grab Dom ... please pray we can keep him healthy this winter!!  We need those lungs to heal up!  Dominik always seem to regress in his abilities during sick season as well!  Two steps forward and 1 step back ... I hope to avoid that step back this year!

Thank you all for your prayers for our family!  We are entering a tough season please continue to pray for health for us all!

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August 12, 2012

What an exciting couple of weeks we have had!  I will start back with our trip down south ...

I know that Dominik has told you about the trip ... so I will tell you about my mom and Peter's experience in the free clinic!

Anat started out the session by asking parents to talk about the successes of their child that is in ABM.  Of course Peter was one of the first ones to pop up!  Proud daddy!!!

After Peter spoke of Dominik's progress, Anat continued with his progress in the world of his MRI.  Now I have a confession to make.  Many of you knew that we would be seeing our Neurologist in July ... some of you have asked about it because we posted about it in July, but left it very criptic.

We did see the Neurologist and left very discouraged.  Everything he said was completely contrary to what we felt we were seeing.  He made statements that a doctor should never ever say to a parent!!!  He refused to pull up both MRI's and show us the comparisions and was extremely dismissive!  That very afternoon we recieved a phone call from his office telling us that they were taking the MRI's to OHSU for a 2nd opinion.  We recieved that report about a week later ... completely contrary to what he had told us just a week before!  We were left very discouraged and at a loss as to what to pass on to all of you!  After our first meeting a very wise person reminded us of the FACTS ... "You asked a non-God fearing man what God was doing, and he didn't know!  How true is that!!!

Now for the exciting information!  Anat took Dominik's MRI's to one of her colleages and after she was able to look it over she forwarded the whole MRI to one of the department heads in the Neurology Department at Harvard!!!  Anat said that when she received the department heads report on his findings ... she couldn't get up for 10 minutes!!!!!!  It is so exciting to see what the Lord is doing and to know that some are willing to say it truely is a miracle!!!

Now ... there is lots more to tell you about but I will try to make it brief!

This last week, for the first time ever, we left all 4 of our kids for 6 days!  It was only the second time we had left Dominik over night and the first time we left him for more then 1 night!  Peter and I had an amazing time together ... uninterupted conversations, cards, lighthouse tours and lots of just walking and talking!  It was so precious for us both!!!

My parents, Grammie and Grampie, took the kids for those 6 days!  They had some ups and downs, but over all everyone did great!!  Grammie got lots of Dominik time and Grampie had fun with the girls!!  They went swimming and on many bike rides!!!  THANK YOU GRAMMIE AND GRAMPIE!!!!!! You are the greatest!!!  They even got an evening out with Auntie Nikki and Uncle Tim ... what a special treat for them all ... THANK YOU NIKKI AND TIM!!!!  

The last adventure to tell you about is our trip to Butte Falls.  A special friend of ours decided to add Dominik to her 7th Annual Fun Run/ Walk!!  It was great!!  The girls were able to cheer in the runners and they made some great friends too!!!  It was awesome to see God work ... We received the proceeds from the 50/50 ... however, when the winner came to claim his half, he donated it back to Dominik!!  On top of that he also handed us an $100 check for Dom!  WOW!  That was truely a blessing!  We met another sweet lady that was traveling through with her family in a motorhome.  They saw the race, decided to sign up and race!!  After the race we got to talking and we were able to tell her all about the reason for the race ... she then donated a movie to the girls (she had purchased for her niece) and $50 for Dominik!!!  Some days I am truely blown away when i stand back and watch the Lord work!!!  What a blessing ...

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June 20, 2012

First off I have to say THANK YOU ... you have all been so patient and waited for an update ... It's silly to appoligize as I know that you all know ... Life Happens!!!  Well, it has in our house too!

So I must go back quite a ways, but I will try to keep the facts and limit the details!

I can't remember my April much ... so nothing too exciting must have happened! :-)

May started out with a Bang and quite a bit of excitment!  As you all know, the girls received a huge gift from one of our local Christian schools, so both Jaiden and Jordyn attended school this year (vs the homeschooling we were doing)  So with attending school comes germs ... and lots of them!!!  All 3 girls stuffered from the same cold the end of April ... and then it hit Dominik!  We watched him carefully, but he got increasingly worse over a couple of days so we decided to get him checked out!  We weren't in the doctors office for more then 5 minutes before the paperwork was done to admit him to the hospital!  Discouraging as I was headed out of town, for the first time without any children, for my sister's bachelorette weekend away!  However, I had an amazing peace about the whole thing and in the end was glad that I stayed with my precious little one!

After chest x-rays and a day of "watching" no one really knew what to call whatever it was that Dominik had.  It wasn't RSV, however, all the nurses were convinced it was, it wasn't pnemonia ... so they decided to call it Bronciolitis (really it was treated just like RSV is treated).  We were told that Dominik's lungs are very damaged and the amount of time needed for damaged lung tissue to regrow is about 6 years.  So by the time he is about 7 years old, he should have much healthier lungs ... but the big challenge is between now and then!  

After 5 days in the hospital, we decided it was time to go home!  We had some wonderful friends who cared for our kids over the weekend as well as during the evenings until Peter got off work!  Dany stayed with my during the day and we hung out with Dom!  It worked out ok ... the girls were a little tossed around, but they did well through the week!

We went home on oxygen once again ... it is hard to have.  We got us to just "grab n go" and now there is so much we have to take with us when we go out.  Dominik is on a liquid oxygen tank and it is not portable.  So when we travel, I have to make sure I have enough oxygen for the whole trip! :-(  Dominik's Dr. felt that this would be a temperary issue and that once healthy again, we would be able to get rid of it.  We have a SAT monitor that Dom is on during the nights, that beeps at us if his oxygen levels get to low ... it is a peace of mind item for us, but also something that takes away sleep!  We are seeing improvement though!  We are slowly getting back to the 3 hour chunks of sleep and he is maintaining his oxygen SAT's at night pretty well!

Dominik's day time's are awesome!  He is usually awake and happy which is a huge blessing!!!  I love having a happy baby ... it tends to take my "other" struggles and make them disappear! :-)  Speaking of which, I have a little one next to me as I type this, who is playing with a rubber rattle with BOTH HANDS and giggling and grinning about everything!  Wow God is good!!!

We are working feverishly toward Dominik's second and final fundraiser for this year!!  We have been collecting yard sale items for about 2 months now ... I will have to take a picture to put on here, because my words can no explain the amazing support we have received from our community as well as family!  If you can picture this you will have an idea ... I have in front of my house a 40 foot semi truck trailer ... this trailer is packed about 7 feet high and is just about 3/4 full!  This does not exclude the garage FULL of furniture that has been donated!  We still have donation coming in and I'm just tickled about it!  I am in awe of the amazing outcome and support!!  We are making banners and are hoping to hit up the radio, tv, newpaper and of course it's all over facebook!!!  I hope to update before the middle of July, but if not, I'll update after the yard sale so you know how it went!!!  I'm so excited!

Well ... I think we are about up to current issues ... Peter had gallbladder surgery a few weeks ago, and like all men, is failing miserable at following the doctors orders!  His wife is tieing him down most evenings so he is limited in his lifting!  He is healing up well and seems to be on the mend!  The girls are out of school and we have made it through the first couple weeks ok!  Dealing with the normal issues, but the girls are enjoying being home and I am enjoying my time with them!!

We are headed down to San Fransisco this weekend for another whirl wind trip, but it will be well worth it!  We will get some great time with the girls at the beach and enjoy some time together as a family!!  We have decided this summer, that we would slow down on Dominik's trips and focus on more time with the girls and time as a family!!

Peter and I are looking forward to a trip, just the 2 of us, in August for a week!!!  Thank you to my aunt and uncle for their gift of a week away with their time share, and a big THANK YOU to my parents, Grammie and Grampie, who will be taking all 4 of our kids for the week!!  Please pray that Dominik is healthy and does well!!!  Also be praying that the girls do well for the week and are big helpers with their brother!!!  Peter and I are so very excited and it can't come quick enough!!!!

Wow ... long update!!  I will end this with a big Thank you to you all for your faithful prayers!  God is good and we can see him throughout each day!  Taking one day at a time and making it through! :-)

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April 6, 2012

Boy it has been a little while!  I will start with just a quick update on life ...

The girls are doing well in school and seem to be adjusting to the traveling life of our family!  They have started traveling more with us the last few weeks and will continue over the next couple of months.  As the school year is coming to close for my mom ... she will get to enjoy some freedom with my kids this summer and next year!! Great timing as Nana has taken on some new challenges that will limit her free time for travels for a while!  What a blessing both families have been over the last year!!!  We could not have done it without you!!

Peter and I were so blessed to have a 5 day vacation with my family this Spring Break.  What an amazing time it was!  Away from home life, work and other stresser we had an amazing time with some of the worlds greatest people!  They not only helped with all the kids, but they took all 4 of them on so Peter and I could enjoy some time crabbing together!!  The girls were able to help with the cooking and Jaiden took on my favorite past-time of cleaning the crab!  What a trooper they all were!!!  It was a wonderful break for us and we came home surprisingly renewed and ready for life again!

Dominik is doing well!  His weight gain is slow but steady and moving right along with the growth of his body length and head!  He is perfectly proportioned and looks great!  We are still battling the throwing up issue, although we feel that it is in direct relation to his on-going cold (lungs are clear, but lots of mucus coughed up) and his troubles to clear that thickness as well as his saliva ... he is getting lots of teeth!  Most kids are up and crawling or walking and so that saliva exits the body, for Dominik in his sitting reclined position that saliva is pooling and again, hard to clear!  He seems to throw up about once a day ... so it's easier to plan for! :-)  He is still tracking well, enjoying hearing his sisters during the day and still enjoys singing to music!!  He has started tolerating both hearing aids in at the same time for about 60% of his awake time!  He really seems to be enjoying and interacting well when he is hearing!

So a quick update regarding our last update ... I talked about a hospital bill back in February that had just surfaced for me, $3500.  We received a letter about a week ago stating that we qualified for 100% financial help and it was covered!!!  On top of that I went to pay the last of our ENT (Hearing) bill and they just randomly decided to cut it in half.  What a surprise and a huge blessing!!  So that brings us to now ... ALL 2011 MEDICAL BILLS HAVE BEEN PAID!!!!!!!   YIPPEE!!!  Now, on to 2012!  We qualify for financial assistants through most of the hospitals and specialists we see, so that is helping us tremendously!

I close with a short story that a dear friend of mine shared with me ...

The Special Mother by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit.

This year, nearly 100,000 women will become mothers of handicapped children.  Did you ever wonder how mothers of handicapped children are chosen?

Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation.  As He observes, He instructs His angels to make notes in a giant ledger.

 "Armstrong, Beth, Son. Patron saint, Matthew.

  Forest, Marjorie, daughter. Patron Saint, Cecila.

  Rutledge, Carrie, twins. Patrons Saint ... give her Gerard.  He is use to profanity."

Finally, He passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious.  "Why this one, God? She's so happy."

"Exactly," Smiles God.  "Could I give a handicapped child a mother who does not know laughter? That would be cruel."

"But does she have patience?" asks the angel.

"I don't want her to have too much patience, or she will drown in a sea of self-pity and despair.  Once the shock and resentment wear off, she'll handle it.

"I watched her today. She has that sense of self and independence that are so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make it live in her world and that's not going to be easy."

""But Lord, I don't think she even believes in you."

God smiles. "No matter, I can fix that.  This one is perfect. She has just enough selfishness."

The angel gasps. "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive.  Yes, here is a woman whom I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied.

"She will never take for granted a spoken word. She will never consider a step ordinary. When her child says "momma" for the first time, she will be witness to a miracle and know it.  When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.

"I will permit her to see clearly the things I see - ignorance, cruelty, prejudice - and allow her to rise above them.  She will never be along.  I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And who about her patron saint?" asks the angel, his pen poised in mid-air.

God smiles. "A mirror will suffice."

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February 28, 2012

As I climbed the stairs this morning for the last time before racing the girls to school ... I hear my last "load" coughing up a storm.  I reach the top of the stairs, while the girls are loaded and the car is running, just in time to see Dominik throw up about half the meal Peter had fed him just minutes before.

Ugh!  Why me?  We manage to get everyone ready and loaded on time and it's looking to be a great day!  Oh no, now we are going to be late, more laundry for mom and another bath to be taken!  What a discouraging way to start out the day!

We are heading into week 2 of 5 very busy weeks with back to back travel weekends!  The exhaustion has already set in with late nights trying to get caught up on projects and house maintenance as well as Dominik's struggles in sleeping!  He seems to struggle for a week or so after sessions with Marcy in San Rafael ... that brain of his is just working working working!

Our trip to Shriner's last week was good, enlightening and educational.  Dominik showed his best side to all!  He sat up and showed the PT's and OT's who was boss and all that he can do!  He also thoroughly impressed the highly respected Pediatric Feeding Doctor. (Who is also the director of CDRC)  It was a long and exhausting day, but we made it through!  They are a group, similar to CDRC, that we will see about every 6 months.  They will evaluate Dominik and give us their opinions on what we need to do next in the world of orthopedics.  We have made sure that they know that WE are the final decision makers for our son and that we will not do anything we feel is not needed.  That seemed to be a breath of fresh air for them all!  They have encouraged us to go specific ways with Dominik right now and we have been very educated and thorough in our rebuttals as to why we don't want to go there yet.  I do believe these doctors see that we are educated and have a good idea of what way we want to go!  They were not shy in giving their opinions and advice, but were courteous when we respectfully declined their offers of equipment.  We took home the info, but left them with a "probably not yet" reply!  I greatly appreciated that!

We arrived home Wednesday and repacked, loaded up the whole family and head to San Rafael on Thursday!  That was a bit much and not something I would make a habit of, but as always we made it through with flying colors!

Dominik did wonderful as always.  He never sleeps well, but is chipper and happy during the day.  He did great for Marcy and she is thrilled at what he is doing!  Peter went to a 2 hour clinic on Saturday specific for Special Needs Children with Anat.  He always gets something out of those and is excited when he gets to talk about what he learned!  Jaiden watched a video (the live feed of daddy's session) and was able to do some of the movements that the class was doing!  She found that to be quite exciting!!

After the session Peter was able to steal Anat for a bit and show her Dominik's MRI.  She was quite excited about the results and requested a copy of the MRI to take to her Neuro-Scientist.  He is a nationally known Neuro-scientist who works closely with Anat on much of her research.  We are eagerly awaiting his thoughts and ideas on Dominik's growth!  So don't be surprised if you start seeing Dominik's brain on the internet for research!!! :-)

We are moving along, a day at a time.  Some days seem to never end and those days are the days I feel like I just can't get out of this funk.  Other day's (which are sadly fewer and far between) I feel like I'm flying ... Dominik does amazing, good sleep, happy kids and a non stressful day!  I wish I had those more often as the down days seem to drain me even more every day!!

I'm looking forward to our much needed family vacation this March!  NO work for Peter and some time together as a family doing something we all LOVE ... CRABBING!!!!!!

Thank you all for your continued love and support thru prayer!

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February 17, 2012

Exactly 1 year ago today, we spent our first full day at home with our precious little bundle!  Wow, what a year it has been!!  Some days I wish I could go back and change something to simplify my life, however, then i am reminded through that still small voice that the Lord had a plan for this all along.  To imagine my life any different then it is now is hard ... the Lord has carried our little family through so much and to see where we are now in our relationship as a family as well as our relationships with the Lord, I wouldn't change anything!

I won't go into too much detail because I see the Dominik has filled you all in pretty well ... so I will cover some of the smaller and yet huge steps we have made!

Last Friday (the 10th) we picked up Dominik's 2nd hearing aid.  We were very excited about that ... however, with that came the un-nerving cost.  It ended up being $1495.  I asked if they would be able to allow us to take the hearing aid and give us a few weeks to try to find some funding!  Usually they require full payment (they don't do payment plans) before allowing you to take the equipment.  So I have spent the last week glued to my computer searching for funding applications to try to get this funded!  

This week was a packed week of therapists and appointments ... and my hearing specialist threw one more unexpected visit in there.  What a pleasant and shocking visit it was!  She showed up with a Speech Pathologist ... you can image my "on guard attitude" as soon as she said that!  I have 2 and I really don't need or want another opinion!!!  Well, this one was different ... she announced to me that the Quota Club (the club that covered Dominik's 1st hearing aid) was going to put $1000 towards his 2nd one!!!!!!!!  Wow ... what an amazing surprise!  Most of the time the audiologist gives a discount when community or public funding is used ... so our cost will be very low!  I'm tickled pink!

Dominik's weight gain is good now and we have him on a new formula.  The new formula is giving him more calories per serving thus allowing us to feed him a little less and still getting to sleep thru the night!  We are still working on the bottle and Dominik is making good progress!  We are going slow so we don't cause any additional problems with breathing or lungs but he is learning well!

We will continue to see Deb in Eureka as much as we can!  She is helping us make great progress with Dominik and his eating as well as working with him in ABM too!  Deb is wonderful and has really encouraged Peter and I in that we are headed in the right direction!

Our whole family will be heading down to San Rafael to stay with Aunt Bonnie next week.  We will be seeing Marcy again and as always we are expecting great things!  I can't wait to see what Anat thinks about Dominik's MRI!  I'm so excited! :-)

Life is moving along as normal ... and yet so quickly!  We have Dominik in Shriner's and CDRC (development group thru OHSU in Portland) both with their benefits but also more opinions to consider! We still use ECI (early childhood intervention) at home and have ABM on top of all of that!  Some days it is just too much. 3 Speech Pathologists plus a feeding clinic, 3 PT's, 2 OT's and 3 Pediatritions, each with something to offer, but also each with their own way of doing things and their own opinions!  I feel on the defense any time we meet someone new.  We are headed to Shriner's next Wednesday (yes, the same week we head to San Rafael too!), I am praying that I can be open minded and understanding and yet a confident and controlled parent!  

Based on my many conversations with our Family therapists and help, very few parents are willing to tell a Dr. "No" or be a strong advocate for their child.  Well, this one is a bit over the top!!  We are our son's best advocates and will continue but still need to be open and ready for new things!  It's so hard with so many opinions to figure out what the right direction is and what the best decision is for Dominik.  I feel like right now it is the easiest ... but when it comes to wheel chairs, standers, braces and surgery's it is so hard to decide what is best for him, our family and our finances!  Oh the decisions!  So many of them!!

We are enjoying lots of time with the girls in the evenings!  This is good for them and us because we are gone so often we miss a lot of time with them!  We really enjoy our down weekends!

God is so good and is taking good care of our family!  We are excited to start this new year out with a healthy little one, girls who are doing incredible and family ties that are stronger then I even imagined!  It has been an incredible year and I look forward to this next one!

Thank you all for your continued prayers and support!

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January 18, 2011

I start today off telling you I have good news, great news and amazing news!!!  Then I will tell you a little about life right now ... which is good, but not without it's trials!

In December we were able to get Dominik a different hearing aid.  It is more then half the size of the first one.  It has the same power and programmability, but it is much smaller and much less of a fight for mom!  Just last week we went in to make sure all was working well and to check the left year.  At 6 weeks of age, the left ear was not working enough for  a hearing aid to help at all.  However, this last weeks appointment was very exciting.  We hopped into the booth and tested his left ear ... getting amazing reactions for Mr. Dominik!  So we have another aid on order and should be receiving it in the next week!  The only difficulty behind this one is ... it's a $1000.  Ouch!  We are really hoping to not have to take it from Dominik's ABM account as we want that for his trainings, but we are waiting on the Lord for the direction He would like us to go with those finances. 

It's funny ... when you graduate from college one of the things you are the most excited about not having to do any more is scholarship applications, grants proposals and paperwork!!  Haha, I'm right back at that!!  I have found some incredible sites online that help with some amazing things.  We have applied for a few that are general grants.  There are some specific ones we are hoping we can apply for once we get the bill for Dominik's hearing aid.  There are also some that will be able to help with ABM too!  Please pray we are able to get our hands on these applications and in contact with the correct people in order to make this happen!

If you have kept up with my Journal entries, you would have read about Dominik's Christmas time drama.  Well, God is good and He once again lead us in the right direction!!  They always say "Mommy knows best!"  Well, I tell you what ... this set of parents are running the doctors now!!!  We were concerned that possible Dominik's prevacid dose was too low and his acid reflux was the cause for all the throwing up.  We feel that when he throws up something in his body is shutting down or closing off.  It has been suggested that when the body does something that violently the trachea can close off.  Obviously, not something that Dominik is choosing to do!  So we felt that if we could cut the throwing up to a minimum we could stop these "episodes".  Well we upped the dose of prevacid (per a request to our Ped Dr.) and we have not had a throwing up episode since!!!  WOW ... what a blessing that is!  We are now slowly getting back into the foods and introducing a bottle again ... Pray Dominik can handle the solids and that Peter and I can be patient as we are moving VERY slowly!!!

We started out our year with over $7000 in bills that were never settled last year.  A bit of a discouraging start!  We began with addressing the balances with the financial agencies and were left with 1 staying "sorry you owe this" and the other saying we could fill out a financial application again.  So we sat down and wrote a letter to the NICU regarding our situation and where we stand as a family!  We have had a very special donor who was interested in paying off the NICU bill, IF the doctors were will to accept 1/2 the payment as the balance.  We approached them with this offer and THEY ACCEPTED!!!!!!!!!!!!!!!

Thank you to that very special family for that very special donation!!  This is allowing us to not have to tap into Dominik's account, thus allowing for more training!!!

We are continuing with our application for financial assistance on the remaining balance of my hospital bills.  I'll let you know the outcome of that!!

We are, not so eagerly, anticipating many more bills this year then last.  We saw big ones, but few because by the time we got settled with our specialists we had hit our insurance total!  So this year is a bit different in that we are dealing with a lot of different bills!  I am excited to say that we paid off a lot of bills last year and rarely had to tap into Dominik's account ... the Lord provided in amazing ways!  I am nervous and excited to see how he provides this year!  Thank you to those of you who donated to Dominik ... but specifically for his bills, that was a great help!  Thank you Lord for providing the rest! :-)

We are so excited at the progress Dominik is making!  We are thrilled with the progress we are seeing him make thru his training ... his Dr. are shocked as well!!!  Thank you to all of you who have donated to help make this training possible!  You are all amazing!!!

Updates and Prayer Requests:

    We are treating Dominik right now for a potential of Glaucoma ... right now it is more preventative.

    We are starting a new formula - a big boy formula and continuing with solid food attempts.

    We are headed to San Rafael the 27th for training.  So excited to see the changes!

    We are headed to Portland for yet another run on an MRI and G-tube change Feb 3rd. 

THANK YOU ALL FOR YOUR FAITHFUL SUPPORT, LOVE, PRAYERS AND FINACIAL HELP!  YOUR HELP HAS BEEN A HUGE BLESSING ... SO AMAZING!!!

WITH GOD ALL THINGS ARE POSSIBLE!

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December 31, 2011

Wow ... has it really been 2 months since I updated my journal?!?!  Well, so much for my update weekly, huh!

Well, I am going to give just a quick update on the last couple weeks ... since it happens to be 1 AM and Dominik has finally settled in and so we are too!!

Well ... The month of December has been the most eventful month of them all so far!  We spent a weekend in San Rafael and it was amazing!!!!  Dominik absolutely blew us away on what he was doing!  He is not only trying so hard to sit up but he spent some time on his stomach and he was using alternate leg actions and bringing up his knees in a crawling motion!  It was so very exciting to see him do that!!  It was a very exciting trip ... probably the best so far!

Late into December we headed up to Portland to have Dominik's 1 year MRI.  Our first appointment was to have his G-tube checked ... we discovered that at least 1 of Dominik's stiches is stuck in with his tube.  This is causing lots of irritiation and bleeding.  It was good that we had this checked ... the Dr. has decided that the tube (also know as a "button") they put in is not doing a good job and he needs the other style which has many different sizes and will fit his and our needs better!  They scheduled for this to be changed while Dom was sedated for his MRI.

Next was the MRI ... after waiting for an hour and a half for the numbing cream to work on his hands and feet for the IV.  The nurse finally got us back and started preping ... then asked the amazing question, "Is Dominik sick?". Of course he was ... he has had lots of colds, this one the worst so far, in the head but also an awful cough!!  So at this point they informed us that they can't sedate a sick baby!  Oh boy, I was fit- to- be tied!!!!!  We drove 6 hours and lost our entire day for them to tell us that they couldn't sedate a sick child, when they could have said over the phone ... your child must be healthy!!!  Oh well, right!!!  The Lord had Dominik's best interest at hand and the Lord knows the plans he has and the timing for everything!  God is good!  Peter and I had a good day and got to spend some good time together!

So then we head into the holiday season!  Dominik has started having some struggles with his breathing!  We have had 6 of these (we call them "episodes").  He had 3 before Christmas and one on Christmas Eve.  The Eve one was scary and yet so good.  We were at Grammies house and the family was around for breakfast.  My future brother in law was there (Firefighter/ Parametic) and that was a huge blessing ... he was able to see what Dom does and how we handle it.  He was able to give Peter and I some good pointers and things to help on future episodes!  He has had 4 since we got home, however, I only count 2 because with good suction he was able to get himself out of the episode!

These little episodes are extremely scary.  Dominik will usually throw up or spit up, but once he does that, he fails to regain his breathing.  It is the scariest feeling holding a pale lifeless baby in your hands praying that he will take that next breath!  I really really hate it and I pray that Dom grows out of these quickly!!  He had one of these tonight and I sat on the couch holding my precious love and just cried ... who knows how long but my eye's hurt now!  Although we struggle so much, I can't imagine my life without this precious little boy!!!! 

Please pray that the Peter and I can stay strong during these scary events and know when it is time to call 911 or head to the ER.  It's so hard to know if we should go or not ... tonight he was shaking, had a fever but was fully alert and acting totally normal!  He had been fighting a fever since earlier today, so the shaking we determined was a chill from a cold room, a wet outfit and his fever.  But determining if it is life threatening is hard!  Please pray for that the wisdom to know when it's time to head to the hospital or make that call!

God is good and we will be celebrating Dominik's 1st birthday in just about a week!  I'm so excited and yet I still cherish every moment I have with my precious little bundle!  I pray that the Lord continues to work on him ... improving those lungs and keeping him growing strong!!

Thank you all for your love and support!!!  We feel those prayers daily!!

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October 25, 2011

Wow, once again I have totally let down on my updates!!  I plan to make this one short and sweet!! :-)  My goal is to get on here once a week with my personal/ family updates ... that should help to keep them short and easier to read!!

So the quick skinny ... besides what Dom has updated you all on!

Dominik is doing amazing!!  I am very excited for what I am seeing him accomplish! :-)

We had a meeting with CDRC (Child Development Research Center), they follow up with Dominik every 6 months!  They were thrilled to see where Dominik is and what he is doing!  He is meeting goals fast and with great enthusisum for learning!!  One of my big fears, that so many people have said I have time to process, come up at our meeting!  It's apparently time to start thinking ... SEATS/ WHEELCHAIRS!!!!!  Ok, um ... yeah, NO!!!!!  Not going to do it!  That means I have to start thinking stairs, transportation, etc. !!!!!  WOW! So not ready for that!!  Everything about getting him a seat, custom made for him to help with support, goes against the program he is in!  We want to encourage him to do things at his pace, not ours!!  He will learn to use those muscles ... in his time!  I know that it is going to happen eventually, but I didn't think it would this fast!!  So the wheels are turning on to the next step!

We found out a couple week ago that Dominik has a protein allergy. Oh bother!!!  So we have to avoid foods with dairy and soy in them!!  This can be difficult when it comes to baby food!  He is struggling to take bottles now that we have changed his formula and I fear it's because it is awful stuff!!!  So please continue to pray that he continues pushing to better his eating!!!!!

I am working feverishly on the Benefit Dinner/ Silent Auction!!  I have had some great help on this!!  Some of our family in Medford has taken this on full force and has been a great blessing!!!  Some of our friends have really taken this on too ... the Medford help has been amazing!!!!

Oh, I forgot, we saw the audiologist today!! She tested Dom's hearing by putting us in the room to test his reaction to sound!  Her results ... HE HEARS AT CONVERSATION LEVEL!!!!! Meaning he can hear us talk!!!  I am so very excited about that!!!!!!

Looking forward ... we are planning a follow up MRI and a hip x-ray!  We are headed to Bend for some sessions and back to San Rafael in December and January ... as well as a trip to Eureka!!

So, on we go with our lifetime of partying!!!

Love and hugs to you all!!!

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September 15th, 2011

Wow, it has been a while since I have updated for myself!  Sorry to be so disconnected.  So much has happened, however, more time is never in that equation!

I will try to go back and briefly cover the last month for you! 

Dominik as healed up nicely from his G-tube surgery.  We still battle the eating a bit during the day, but that is just because we don't want Dominik to loose his eating abilities.  Now that he is getting the bottle down and has the stamina to eat and not tire out as easily, I am looking forward to hitting the solid foods again!

I think every parents goes through a time of feeling like a complete failure.  I feel like I have that on a semi regular basis.  There is so much I must do for Dom and I get to the end of the day and realize I failed to do something and I could just scream!!!  We are struggling with the hearing aid, need to get back on solid foods, got to get some supplies built for Dominik to help with his hearing and touch.  I was reminded that at about 8 months, babies who can not hear themselves "chatter" will begin to stop making those sounds.  Of course, freak out mode kicks into gear because i struggle the most with the hearing aid.  I have to constantly sit with him and keep he hearing aid in, but because of all of his new found random movements, this is a frustrating task!  It is so easy to enjoy that time with my son, but so hard to push all of the "other" things that are weighing on me or staring me in the face off to the side!!

On that note, I have been given some of the most amazing blessings!!!   My parents together with my mother-in-law are paying a friend of ours to come and clean our house weekly!  Sonia cleans houses and does a wonderful job ... but she doesn't just clean mine ... Tuesday we spent a lot of time down stairs organizing and throwing stuff away!!!  As long as Dominik and Dany work with me, I am able to help, but if not, Sonia just takes off and does amazing!!  She is coming next week to clean the house as normal (kitchen, baths, vacuum etc.) but then she has planned a couple extra hours a different day to come back and help with the organizing downstairs again ... at no charge!!!  How wonderful is that!!!  Thank you so much Mom, Dad and Nana ... This is one incredible blessing for us!!

The other amazing blessing is a special friend of mine!  She had planned once a month to come over and stay the night with us.  She is giving Peter and I a date night as well as a good night sleep TOGETHER!!!  She will be caring for Dominik overnight for us!  WOW ... what am amazing blessing!!

We are gearing up for our last fundraiser of the year!  We will be having a benefit dinner in Medford at Cascade Christian High School.  Some of the students have kindly offered their assistance in all areas!  What an amazing blessing once again!!!  The Lord is opening the doors for this adventure!!  It has proven to be a bit challenging since I am an hour and a half away!!  Please pray that once again, the Lord opens those perfect doors!

The girls have started school ... I don't remember if I told all of you this, so I appolgize if this is a duplicate!  One of our local private schools ... Hosanna Christian School ... recieved one of our updates where we discussed the girls school conundrum.  We then recieved the amazing blessing of TWO full scholarships Jaiden and Jordyn!!  I am so very thrilled and pray that the Lord opens up times for me to be able to give back to the school!!!  The Lord is so good!!

The Lord is continuing to use our family in amazing ways!  He shows himself caring and compassionate at every turn in the road!  I struggle most days to get through the day, but in the end, I know that the Lord has one great plan for our li'l precious family of 6!  I can't even imagine how we can be that important ... but Dominik has changed countless lifes and God continues to use him!!

Hugs and blessings to you all ... thank you for your faithful prayers and donations! 

=============================================================== 

August 19, 2011

I once was told that when you pass information on or are in a situation requiring negative information, to "sandwich" your information.  Always start with good positive information, then to the negative and ending with the positive!  So, in my entry this morning, I will focus on making sure I do my sandwiching!

I will start back about 24 hours!  Well, a bit more since our day on Thursday started at 2 AM!  We rolled out of bed after a bit of a shorter night then we had anticipated and hit the road for Doernbecher's!  We, amazingly, arrived and hour and a half early!  What a good feeling!  We got checked in, and once Dominik was taken back into the pre-op room, we were able to meet with the surgeon and surgeon's assistance, the anestialogist, and the OR nurse that would be with Dominik.  It was nice to get that time with each of them.  We were able to pass on some of Dominik's scary quirks and things to watch for, I was impressed at how "parents always know best" their attitudes were!

Once Dominik was taken back into the OR (11 AM), our waiting game started!  Peter headed down for coffee and I sat with the volunteer's who come to help keep peoples minds busy!  We made some bead braclets for the girls and a necklace for me!  It was good and took up about 45 minutes of my hour!  They had all told us roughly what our time line would be!  An hour to an hour and 20 minutes until we would see the Dr. then an additional 30 minutes in recovery before we could go back!  We saw the Dr. at noon ... right on schedule!  We saw the anestialogist at 12:20 and were told he was recovering well and had one "episode" we had warned them about! (2 total ... one in OR and one in recovery) He told us we would be seeing the nurse any minute and we could head back!

40 minutes later, Peter and I were done waiting!  We had been told all was good and he was recovering well, but then we didn't get taken back to see him!  Peter went and spoke with the receptionist who took us back ... apparently, there was a shift change and they forgot about us!  When we got back there they had him on 1 liter of oxygen.  I was shocked that he was needing that much, they said he needed it because he was on oxygen at home.  This is where my frustrations started!  The information that they had been given was either assumption or they were not hearing Peter and I!  We told the nurse that he was not on oxygen and had not been for over a week ... I requested that she turn down the oxygen to see how Dom would handle it!  She argued with me a bit about him needing it because he was on since birth.  She finally gave in and was willing turn it down to see how he did ... and as always, he blew her out of the water!!!  She turned the O2 off and he stayed at 96-98 for over 2 hours ... way to go Dom!!!

So the negative??  There were so many things that they had put into their charts incorrectly!  The consultation nurse that we saw 2 weeks ago documented that Dominik was on prevacid but had no know issues with acid reflux!  What?  He has had it since birth!  The oxygen part of this was totally understandable since he was on O2 last they saw him! :-)  They had in his charts that he has deformed fingers and has CP (cerebral palsy).  I was quick to correct them on the CP.  In my opinion saying that he has a "high risk of having CP" (our peds neurologisy said) does not mean that he has it ... let's give him the chance to beat those odds!!!  Our admitting nurse was wonderful ... she double checked everything with me as well as the deformed fingers and was quick to fix all the wrong information!!

There have been little frustrations thru the course of the whole stay ... medications being ordered correctly but the wrong ones sent and not verified ... except by Peter and I! (ordering prevacid and recieving prilosec)  Orders being given and changed multiple times and the changes not being passed on to us ... i.e. when and what and how he could eat!  Here I sit at 11:30 and he has yet to eat anything!  Due to Dominik's condition we are trying to make sure that very little changes happen for him.  Keeping him on the same meds as home, elevating him during sleep, etc.  The doctor's would not allow us to give him his prevacid last night because it was not a clear liquid that could be administered by mouth, so we get it this morning ... and guess what?  It's a clear liquid that we can administer by mouth ... However, we got this after Dominik had a restless morning and spend 30 minutes throwing up the 3/4 ounces of pedialite we got down him!  We figured out his restlessness was not pain from his stomach, it was his reflux issues and this is why he has been taking so little by mouth!

Now, here is the final peice of bread on my sandwich!  The positive!  OUR NURSE' HAVE BEEN HUGE ADVOCATE'S FOR US!!!!  I have had to stay on them as to the tylenol and the time, but other then that they have been wonderful!  They are staying on the doctors to get orders placed and correctly! (We are still waiting for the dr. to change his formula order from 20 calories to 24 calories, Dom can't eat until they do that!)  They have questioned orders when I have and found out the reason for things as well as errors in the orders that both the nurse' and Peter and I have caught!  WOW ... they are great, friendly and personable! 

Dominik seemed to struggle a bit yesterday with pain, we ended up giving him some morphine because the dr. felt that was best.  Dominik settled right down and relaxed ... a bit to much!  So you understand what SAT levels are ... there is a sensor that is attached to Dominik that tells us what % of his blood is oxygenated.  91-100 is where we want the % to stay.  When he has one of his breath holding episodes he usually drops to the low to mid 80's, occationally he will enter the 70's.  After yesterday's dose of morphine, Dominik had 2 episodes of getting upset and holding his breath.  His SAT levels dropped into the 20's!  He was sheet white and yet relaxed but just not breathing!  We had oxygen blowing in his nose but he was just not responding to it.  The nurses had the masks out and hooked up in the event that he didn't pull himself out of.  He eventually did, but it was very scary and was not something we would like to repeat!  We are sticking to tylenol and he is handling it well and it is keeping his pain levels at a good place!

We all slept ok last night ... Dominik did great!  We can't say as much for Peter or our monitors!  Poor Peter flew out of bed at every beep of the monitor.  At one point the monitor went off, Peter and I flew out of bed to find Dominik happy, asleep, beautiful color and the monitor showing SAT levels at 100 (perfect) ... the nurse comes in asking what is going on because her monitor showed Dominik's SAT's at 50!  What????  All night these monitors continued to go off, we continually checked Dominik's heart rate and SAT's just to find that the monitor is the problem ... Dom was doing fine!  We switched out some cords this morning, however, it doesn't appear to be working!  Strange stuff!

Today we will be starting him on a continuous drip feeds at a very slow rate!  The doctors came in the morning and said we were good to go home tomorrow ... however, with his feedings getting started so late and the goal he has to reach taking a bit of time, we are feeling that leaving on Sunday is a more attainable goal!

I will leave you with Dom's info today and I hope to update on general life tomorrow!  We have been having our daily struggles with changes and still adjusting to this continuous "running" lifestyle!  I have had people tell me we need to slow down, but I only have 7 years to give this kid everything I can!  And, with God's help, that I WILL do!!!!  No giving up from this family ... we will push hard and do our best with the energy and perseverence the Lord has faithful given to us both!

God is good and proving Himself more real every day!!!

Thank you for your support and love ... love you all!

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June 28, 2011

Welcome to Holland ...

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands.

The stewardess comes in and says, “Welcome to Holland!”

“Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

... Well 6 months ago, our family landed in Holland!  It has taken some time getting use to it but I do believe our family is adjusting well!  We have recently had many friends who have arrived or are planning to arrive in "Italy" very soon!  It is very difficult to to be excited for those who are bringing precious little healthy baby's into the world or to hear from a friend just how wonderful it is to see all the new things their little ones is learning ... while mine at 6 months can't even hold his head up!  I pray daily that if I ever run into any of these people, the Lord would give me the joy I need to show love and joy for those families!!! ... and it's working, I have found that the Lord's joy is over flowing just when I need it!  God is so Good!

Remember when your little ones (or big ones) were little and you just begged them to stay that little so you could cuddle up with them??  Well, guess what?  I don't have to wish for that one!  My precious little one is so tiny and is learning daily to bring his body in (encouraging the fetal position vs. the arching) so when he snuggles in, he is just a precious little 12 pound ball!!!  I LOVE IT!!!!

We are currently battling eating!  Dominik is losing weight because he is not consuming the amount of formula he needs to and thus not getting the calories that he is needing!  He aced his swallow study, showing us that he is not aspirating and that he can in fact handle thicker fluids as well as solids!!  He LOVES bananas!  We are praying that he begins taking more solids and he starts gaining weight!  We have some alternative calorie increasing ideas to try as well!  I feel that the reality of a G-tube for Dominik is setting in, but I also feel that the Lord is preparing me for that transition as well!  My desire to see my son crawl and walk has become a far greater desire then the feeding issues we are fighting!  I have had many people say to me that a G-tube is a life saver and lowers stress levels 10 fold ... I am beginning to understand this and I see my desire for my son to walk taking over my desires as a whole!

God is good and shows Himself daily to us!  If not through our son, through the comments we get from others!  God is using our son and using us!  To God be the Glory for all of our trials as they are touching many other lives!!

May 25, 2011

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April 19, 2011

     A daily question for me ... God has given me the desire to finish homeschooling my girls this year, the desire and need to keep my marriage strong and passionate, and the desire to do and be all that Dominik requires ... then he gives me 3 weeks of sleepless nights and uncontrollably fussy days!  How can I give my husband the time and love required? How can I give my girls the discipline, love and teaching that they need? How can I give Dominik the teaching, learning, love and time that he needs? To top all that, how can I give myself what I need to keep myself standing and functioning? Most days I can hardly stand on my own 2 feet ... and on those days we have multiple meetings and people coming to work on Dominik!  People go into things with the mentality of “I can get through this!”  There is no “through” this for us … this is lifelong and will never end!  This is a struggle hard to comprehend!

     I firmly believe that God has a plan for my family; God has a plan for Peter and I, God has a plan for Dominik, and in the end of all of this God will be Glorified!  Do I still question Him? Yes!  I think to Moses (the girls and I are daily doing our Veggie Tale Devotions and we are learning about Moses’ life) he questioned God!  He didn’t believe that God was going to use him to help deliver the Israelites … He questioned God’s decision!  I have questioned God’s decision a lot!  I wonder why He chose our family … many people have said to me “I couldn’t imagine a better family for him!” Sometimes I feel like that really means “I’m so glad that it’s not me!!!”  Some days I wonder what I did wrong to deserve this. Why me? Why our family? Why my precious son?  If people really mean what they say, then why did I have to do something “so good” that God handed me this?  Someone said to me once … “Boy Treena, God must really trust you!”  Why? Why does He trust me?  Most days I feel honored that God trusts me so much, but other days … when I am battling a son who is almost physically stronger than me … I want to know why?

      I have asked Peter and few times why he is able to handle this so much easier then I am … the answer??  He is able to sleep during the week (2 times a week he helps at night), and he is gone 10 hours a day!  I am home battling all of this, including the current condition of my home (which is a total wreck … thanks to Nana, it improved this weekend!!!)  However, all that said and I really wonder how someone can really understand and accept this kind of an outcome?  I know that I am in denial and I pray daily that God heals my son and makes him whole!  So, am I in denial or just trying to be extra optimistic?  I hold on to the hope that the Lord is working on my son daily … but I also have to know that it may not be God’s will for Dominik to be healed!  I know that no one can fully understand the condition that Dominik has until the little things start happening!  The little battles that we face daily … will he ever be off oxygen? Will his acid reflux ever stop? Does he have cystic fibrosis? Will this shorten his already anticipated short life? Will he ever see? Will he ever hear well? Why does he curl his hands? Why does he arch his back? Is the very expensive program that we have him in really helping? Where is the money going to come from for all of this?

      I have so many questions and so many concerns looking forward!  I have to live one day at a time, but yet I have to plan ahead for so many things!  If Dominik never walks, will we have to buy a new house?  Will we be able to afford it?  Will we have to have our van adjusted for a wheel chair?  How will we come up with the estimated $25,000 needed yearly for Dominik’s care?
Why do I tell you all of this?  I have never been the kind of person who says, “I’m fine!” when I’m asked “how are you?”.  I will always give you the truth, but always allow for the short “exit” too!  We are family and we pray for each other, I know that you are all praying for us, but I also know that so many of you have no idea how to pray or what to pray for!  Sometimes I know that you don’t even know how to encourage us!

      Peter and I are planning to spend some much needed extended time with the Lord making our requests known to Him.  I know that through this time the Lord will provide some clarity for us both and I pray some answers as well as some clear direction!

      God is so Good!  I still have my daily “God Sightings”!!  Just the other day I was so flustered about life and everything going on when Jaiden stopped me, just as giddy as a school girl, and told me that Dominik took his bink and was sucking it all by himself!!!!  She was so excited and for me, that was just that gentle reminder and “God Sighting” for me to hold on to!!!  Every morning I give my day to the Lord and I hand him my sweet Dominik and every day God faithfully carries me through the day!  In the past 14 weeks there is not a day that I can see where there is more than one set of foot prints … and they are always the Lord’s!!   God is doing such amazing things in our home and in our hearts!!  Last night at dinner, Danyka said the prayer and here was her simple prayer … “Dear Jesus, please come be my heart! Amen” How much more precious does life get!  My children will be the most sensitive young ladies because of what God is teaching them and what they are learning from their precious brother!  They will make this world a better place because of our family adventure!
Know that your prayers are working and the prayers of thousands of others are working too!!  We get special letters, messages, and reminders daily and they always come at the perfect time!  God knows when we need them!  I know that you don’t understand but thank you for lifting me and my beautiful family up in prayer!

       Now, for a quick life update … we are headed to Medford the 22nd to meet with CDRC … this is a pediatrician, OT, PT, VT and HS.  We’ll have more “work” to do after this meeting.  We are headed to San Rafael the first week of May … if this goes well, it will be a 4-5 times a year adventure, we will the next weekend head to Seattle to meet with the creator of this program Dom is in.  This is just the next few weeks of our life for you.

       Finances are very tight, but right after Dom was born and we were into our long stay in the NIC unit, we started putting some money aside for a trip.  This is time that we need away from our house as a family!  We are making this happen as a time for me to be away from the stresses of my home and it’s condition, Peter away from the stresses of work and some special time for our girls and time WITH our girls doing something we know they love … they need the reminder that we didn’t forget them!!  Peter will take them crabbing (Dom and I will go as long as he can handle it) and we will go for family walks on the beach … the girls have been asking for this for a while! :-)

Feel free to ask any questions you may have … this is a lot to swallow and a lot to understand!  Thank you all for your prayers and love!!!  Keep it coming … it’s working! :-)

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March 28, 2011

    Daily we are reminded just how BIG our God is.  God has made Peter my rock as I struggle though my days!  Most days are just general struggles and others, I feel like I could just throw my hands up!

    I have, as any human being would, had my days where I have questioned everything.  Why God chose this family, why God has put us through so much, and why God continues to challenge us on a daily bases.  Through the last few months I have become a firm believer in the fact that God has an ultimate reason for ABSOLUTELY EVERYTHING that happens ... all the way down to the red lights we hit and the things we forget.  So Why?? after all of this am I up during all hours of the night with a colicy baby?  Why does my house fall farther and farther behind because I am so very tired, suffering from a serious lack of energy, endurance and drive? Why do my children misbehave on days God knows I can't handle it?

    He is challenging me ... "Treena, Do you trust me?"

    My sleepless nights, I get precious time talking to God and loving on Dominik! My house ... well, houses and things come and go, but I get one shot at my kids!  I get to love them, cherish them and teach them for only a short time! NOW, is the time to do that ... my house will always be here! My children, God is teaching me through them, and teaching them through me!  What better way to teach my children to trust the Lord better then by example!

    We both felt like we took a bit of a step back this week when we took Dominik back up on his oxygen.  He just appears to need a little more time on a quarter ... so we will try again next week! :-)  He is still eating well and gaining weight also!

   We are starting to see some changes in Dominik as a result of our visit to Portland.  He has never pulled his knees up, in any situation. Kathy worked on helping him realize that he could ... bringing awareness to the hips and the curling up they can do. She also brought awareness to his neck and the idea of the fetal position instead of the extreme arching that he does.

   In the last few days, we have seen Dominik bring his knees up to his tummy multiple times, he curls up with his head and chin occasionally when being picked up (and he's not upset) and he has used his hands to push on our hand or on his bottle when being fed!  We are very excited about this progress after just a couple sessions!  This is a long road with very gradual changes and a LONG term process!

   The Lord is opening some incredible doors that are very exciting!  We have some things pending for the girls education, we are continuing to get help with food from our community and this is allowing for us to pay off some bills faster!  We even had a $1000 bill completely waived!  Wow!  In one of my conversations with God, I told him that He chose to hand our family all of this and so I needed Him to do the worrying about the money!!!  Well, He is hard at work slowly helping open doors for us to get stuff paid off!!

   We have chosen to use the money donated for Dominik for the Anat Baniel program, and future equipment, toys, wheel chairs, etc.  We are hoping that none of this will need to be used for bills of any kind!  We thank you so very much for the kind and very generous donations that we have received for our precious son!  God is using this little man in some amazing ways!

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 February 28, 2011 - Mommy/ Daddy Update

Wow, what a roller coaster ride this has been and will continue to be!  Taking something a day at a time has a whole new meaning to us now!  Walking through the store looking at the newest blue baby items takes me far past tomorrow and into the world of the unknown.  Just looking at blue "Daddy Loves Me" bibs makes my stomach turn into knots and my heart ache ... will my sweet baby boy ever learn to eat and enjoy solid foods ... or will it be back to Medford for a G-tube surgery???  My heart breaks just thinking past tomorrow's plans and dreams!

What an incredible honor Peter and I have been given with this precious little bundle of joy!  The number of prayers being raised for this sweet baby everyday and the lives being touched by him amaze me!

God has such an incredible plan for our family ... I just have to sit back and enjoy the ride!!

We have decided with the amazing clear direction that the Lord has given us in the last few weeks ... that all of our others worries are for Him to worry about.  It's fun when people ask us what we are going to do about _____, we just get to tell them that the Lord is working on that and we are simply waiting for Him to reveal the answer to us!  Might be in a phone call, a peace Peter and I have or a door that opens.

If you are one who worries about decisions or your future ... I encourage you to take a step back and hand that decision or worry to the Lord and watch what He does with it!  WOW!!  You will be amazed at how much easier your life gets!!  It's not an easy task ... I have to daily give all 4 of my children to the Lord, over and over and over and over again through the day ... but He is much more capable of dealing with all our decisions, choices, plans and dreams then we are!!!  Just wait ... He will amaze you!!!

Have you had your God Sightings today??  I have ...