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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

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For anyone that is my Facebook- disregard this because you probably already read it:  for thise of you that aren't.....
dom has been doing great.  School is going spectacular and he has made a ton of friends! He joined the football team and was doing amazing!  He was supposed to be a starter for last weeks game, but...... 
During practice on Tues of last week he had an accident and fell wrong.  I was watching from the sidelines as I see the players exiting the field and someone laying on the ground.  It took me about 30 seconds to realize it was Dom.  I ran out there and saw a very deformed arm :-(. It was definitely broke! An ambulance was called and thank God the team's football Mom- who happens to be an EMT was there.  She was holding his arm in place. Dom was handling it quite well but in excruciating pain.  I was dying inside, thinking about his bleeding disorder and what this would mean..and seeing your child in that kind of pain---it's horrible.  
Ambulance shows up, and I had asked someone to go get the bleeding meds that I had left at the school- just in case- but never really expecting we would need them.  The EMT's removed Dom's glove- which was horrible! I told them to just cut it off but the didn't :-(. He was screaming.  
Got to ED, they infused bleeding meds and to make a really long story short- both of the bones in his left forearm were broke.  He needed surgery.  They put a long arm splint on for the night and scheduled surgery for the next morning.  Next morning infused more bleeding meds aand they went in and placed a titanium rod through each bone in that arm.  Surgery went well but he was in a lot of pain for a day or two. We have been going back to the hospital everyday since for bleeding med infusion.  Today is the last day.  He was released Thurs and his team played their game for him that night.  Being the amazingly strong kid that he is....he went to the game!  He was made the teams speaking captain and they won the game! 
I cannot tell you how many people from his school called and text me during those two days we were in the hospital.  People I didn't even know!  They were all praying for him.  The varsity team, Dom's team, the coaches, and even entire classrooms were praying for him.  After this I know without a doubt that we have chosen the right school for our boys.  It definitely is like a family.  He had lots of prayers from Facebook friends and family too! His coaches even brought him a ball signed by all of his team while he was in the hospital.  
He is doing really well now and is sporting a very cool camofauge case from hand to shoulder.  It's feeling better every day and he has been decreasing the pain meds.  There is a chance they will be able to take out the titanium rods in 4-12 months...
anyway, I think that's it for this weeks drama!  On to a new and better week! :-)