Tuesday, June 25, 2013

Navigating through Deep Waters: Our New Normal

Dear Family and Friends,
  We were so humbled by the outpouring of love that you showed us as we arrived home from China with our new son. The meals that you provided were wonderfully delicious and they certainly helped us focus on transitioning as a family of 5. We are so grateful for your generosity and for treating us so kindly during those first few weeks. 

  We have been home with Rex for 2.5 months. Rex's transition into our family has been fairly smooth. The first two weeks were the toughest part, but he has consistently shown improvement each new day. He has learned how to share toys without hitting or getting angry.   He loves his sisters and they adore him. He is sleeping in his own bed and napping well during the day. He has a real sense of security and recognizes who his family is. He enjoys the pool and playing with cars and puzzles. He is learning new words every day and as of this past week, started putting two and three words together. It blows my mind how quickly he has learned english. He has conquered his fear of grass and now will approach small puppies with caution but still reaches up to be held if they make any type of movement. His favorite things to eat are noodles and rice. He has developed a love for milk but gets really excited when we  heat up his hot tea that I purchase at the local chinese grocery store.  Although his transition into a family has been fairly smooth, our family still has been through some pretty hard times and that is what we would now like to address to you all. It has taken weeks for us to get even a clear picture of what we are dealing with and we do feel like it now time to fill you all in on our "new normal." 

Some of you may remember that Rex was  sick when we picked him up in China  (high fevers with no other symptoms). In country we noticed that Rex was tiny everywhere except his large tummy.  Once home we  started the normal "adoptee" blood work and expressed our concerns of his large tummy to our pediatrician. The doctor discovered that he had an enlarged spleen and immediately sent us out for an ultrasound. That ultrasound confirmed that Rex has an enormous spleen. The blood work came back quickly and presented multiple "red flags" in which we were then sent to a hematologist. We were told that Rex's platelets were very low and that his clotting factors were off. This led to an MRI and a MRA so that we could properly see what was going on inside Rex's abdomen. The results showed that Rex's spleen was severely large and that Rex had a very clogged portal vein.  We were then rushed to see a GI specialist who would help us navigate through this most recent information. 

Rex has been diagnosed with Portal Vein Thrombosis ; portal hypertension,splenomegaly, and a blood clotting abnormality. PVT is a relatively rare disease . 

One of the symptoms of PVT is the bleeding of varicies (veins that are swollen/engorged with blood since his portal vein is blocked). Recently Rex had several bloody diapers and that is what landed us in our most recent hospital visit. We contacted our GI doctor and were admitted to St. Joe's Children's Hospital.  Last Tuesday morning, he had an endoscopy  which determined the location and  severity of the vericies. The doctor told us that Rex has several  vericies in his lower bottom esophagus and that it was the most she had ever seen in a patient this young and that even the endo nurses were shocked at the number. Our GI was only able to band two because of the risks involved in the surgery. We were kept overnight for observation. 

As of now , Rex has another surgery scheduled for Monday, July 8th to undergo another banding. We have been in contact with Children's Hospital of Pittsburgh which is one of the best children's hospitals in the country. There is a procedure (ironically named the Rex Shunt) that is relatively new and only performed by a handful of doctors in the country (some of which are at Pittsburgh). If Rex is a candidate for this procedure, we may be traveling to Pittsburgh at some point (not sure when) to have this done. Hopefully, we will know over the next few weeks if this is an option for Rex. 

We also want to make something very clear, because I know that it has to be in the back of some people's minds.  We do not feel misled by our adoption agency. Our agency has been fantastic in helping us get even more information than we already had from our son's previous home. They call or email regularly to check on Rex. His orphanage , although very sweet and kind, is in a very rural part of China. They don't have access to MRI machines or a blood lab. 

Adoption is a risk. But God put adoption in our hearts many many years ago and we are trusting HIM to lead us and to watch over us as we sort all of this out. Please keep my precious girls in your prayers as they learn to deal with the demands that a very sick child brings to the family unit. So far they have handled it great, but it is about to get really tough. Pray for our marriage.....pray that we don't give satan the least tiny  bit of a way into our home. Pray that we speak kindly to one another and to encourage one another and to work as a team. Pray that we continue to fight this battle with the power of prayer and to always act in a way that is pleasing to Christ. Pray for us when we are in the hospital. Pray that we get to share Christ through all of this. Pray for the doctor's as they look at Rex's case and help us figure out the best treatment possible. And please pray that Rex can get that surgery soon. It really is his best chance. 

We are so GRATEFUl and blessed that we have two sets of in laws who have helped us with our girls while we have had to take Rex to countless doctor's appointments. 
Thank you to all my friends who have sent me emails, texts, words of encouragement, notes, etc....yall keep me going when I feel like the walls are crashing down . 

Please feel free to forward this email to anyone. This is not a secret, but we haven't really said much so far because we weren't really sure of what we were dealing with until recently (and I'm sure there will be more surprises along the way). 

Thank you so much for your prayer, support, and friendship. 

Paige and Jordanpost signature