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Dominik’s Story

Thanks for checking in..We appreciate your time and especially your prayers! Please take a moment to sign the guestbook so Dominik knows you have been here!We have a wonderful family and many friends and hospital personnel that have traveled this journey with us thus far and are looking forward to meeting many more. Dominik was born on Feb 11th, 2001 by emergency c-section. He was not breathing when he was born nor did he have a heartbeat. He was intubated and like the little trooper that we have come to love he pulled through like a champ! He was a healthy little boy until he was around 2 years old, then he started getting infections, fevers, bleeding problems, more infections, and lots and lots of blood draws, dr. visits and specialist referals. The basics: Dominik has an immune deficiency: It is b cell and t cell which leaves him suseptible to bacterial and viral infections. He also has a bleeding disorder called Von Willebrand Disease. He also has POTS, which is an autonomic dysfuntion disorder. He also has some GI involvement and he has some bone marrow problems... Dom deals with allergies and asthma too. Please feel free to read further for the story of his diagnosis and journey so far....
The story: Dominik was diagnosed with Von Willebrand Disease in August of 2007. This is a bleeding disorder, a bit like hemophelia. Von Willebrand factor is a part of your blood. It's main job is to help your blood to clot. Dominik's Von Willebrand factor is very low. What this means is that once Dominik starts bleeding it is hard to get it to stop. The good news is that we now know what it is and there is medication that Dominik can be given by IV when he starts bleeding (some of you remember his crazy bloody noses!!) and it will help release the Von Willebrand factor that Dominik has stored and it will help him to stop bleeding. We appreciate all plasma donors because this medication couln't be made without plasma! The good news is that the he has type 1 which is the mildest version. Dominik used to have severe bloody noses and even had to go the ER to have his nose packed and cauterized before..It took a long time before a doctor suggested he be tested for a bleeding disorder. The rest of the story: Dom has also been seen at Duke University by Dr. Rebecca Buckley to find out if he had an immune deficiency and determine what it was. The test that he had performed is only done at a few places in the whole world! There is only one Dr. that reads the test so it takes a long time to get the results. We saw many immunologists that told us that Dominik didn't have an immune deficiency...but you know that mother's instinct thing.. I knew that something wasn't right...so we persisted until we finally found the doctor that was willing to look at everything and figure it out. A year later when the test finally came back and 4 years after he began with his illnesses we finally got some answers. Dominik's immune deficiency is a b-cell and a t-cell immune deficiency. Dr. Buckley said she hasn't seen anyone respond the way that he did...Dom has enough IGG but only 1% of his IGG actually works..he is now being treated with a weekly subQ infusion of immunoglobulins called hizentra which is basically a human blood product that will replace antibodies that his body cannot make. He has to have this weekly as that is how long it will stay in his system. This medication can also only be made from human plasma.in July 2013 he was diagnosed with POTS. This is a disease where his autonomic system doesn't function correctly.  Your autonomic system controls things like heart rate, blood pressure, breathing etc.  It took 21/2 months for us to get a diagnosis.  Basically when Dom is in  verticle position his heart rate goes very high and his blood pressure drops. Since his symptoms began he spends almost all of his days in bed or in his wheelchair.  The doctors tell us that since he developed POTS at such a young age their is a good chance he will outgrow it by early adulthood.  We arempraying this is the case.
Dominik also has problems with his blood counts.   He had a couple of bone marrow biopsies which show that his white cells do not function properly. He is neutropenic periodically.
Dom is an amazing boy and we thank God everyday for choosing us to be his parents. Even though it has not always been easy..he is such a strong little boy. He has NEVER asked "why me?".  It always come back to the fact that God has plans and we are not in control. I have learned so much from Dominik..and my faith took on an entirely different dimension the day he was born. Thank God everyday for all of your blessings!!
Dominik is on full time hospital homebound. (He had missed over 60 days of school between Aug 2007 and Jan 2008 and has been in hospital homebound ever since) This means that his teacher comes to the house for school.  He's had the same teacher since starting homebound and she is amazing! He has amazing doctors and we are very grateful for all the time they spend helping Dom.  Dominik is a black belt in tae kwon do (before he was struck with POTS). And he also speaks at plasma centers thanking donors that help him stay alive.  He is an amazing kid! Thanks for taking time to read about Dom.  Be sure to leave Dominik a message.!
 

Latest Journal Update

Update 10/25/14

Well I haven't posted in quite some time... Things are going amazingly well for Dom :-). His football season ended halfway through when he broke both of the bones in his forearm and had to have surgery to place a titanium rod in each bone. He was in the hospital for a couple of days because of the bleeding disorder (Von Willebrand's) but everything went well.  The day he got out of the hospital he went on the bus with his team to their game.  The team played the game for him and won :-). 
Dom didn't let something like a broken arm, surgery and a full arm cast get him down.  In typical Dom fashion he remained a dedicated team mate and attended every practice and game for the rest of the season.  The coaches were a little freaked out the first time he decided that instead of just holding the bags and retrieving the ball he should run the sprints with the team.  Then the coach issued a challenge to see how fast he could do it...he beat the entire team and several varsity players that were practicing with them across the field.  After that they let him participate in some blocking drills, etc.  
I know that most people that had surgery and a full arm cast would have still supported their team but Dom truly went above and beyond.  I am so proud of his dedication and his spirit.  He was supposed to be a starter in the game the day after he broke his arm and the coach moved a few of the 8th grade players to varsity after middle school season was done.  Dom was also supposed to be one of them.  
After 4 weeks in the long arm cast he is now in a short arm cast.  He asked the ortho doc if we could check his arm in 2 weeks instead of 3 because he wants to play basketball and doesn't want to miss tryouts.  The doc agreed and if everything looks good he will have a removable brace that he will wear but he will be able to participate. He was very happy about that!  
School is going great for him, although he is struggling a bit academically.  He hadn't attended school since 1st grade and although it took some adjustment in learning how to take notes, study, organize, etc., he has greatly improved since the beginning of the year!
Socially, I was worried because he hadn't spent that much time with other kids his age. However, all of my worries were completely unfounded.  He has a ton of friends, boys and girls and is definitely well liked.  I feel so blessed at how far he has come in this last year.  I remember last year at this time I was praying and praying that Dom would someday have some semblance of a normal life.i never dreamed God would give us this 360 degree turnaround.  We are truly blessed and I am extremely proud of the young man he is becoming! 
As a side note: he is growing like a weed and is now taller than me! My life is now filled with running all over town to games, practices and social events which I will gladly take any day over hospital and doctor visits! God is great!
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Comments

3 Comments

Sarah Nixdorf
By Sarah Nixdorf
For me its bible study/PC/ y/ pow wows etc.
Www.caring bridge.org/ visit/ sarahnixdorf
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Lori Hanson
By Lori Hanson in South Dakota
Praying for Dom and your family.. So glad he is feeling better.
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Darla Lawson
By Darla Lawson
What awesome news. Praise God! What an amazing boy .
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1 person hearted this