January 1, 2011 : New Years Goal- BRING THIS BABY HOME!

First, let me introduce you to "Kyle". Kyle is in an orphanage in China. This is his photo and description from the orphanage:


Photobucket

ChildID/Name, Birthdate: Kyle, 12/28/1007
Location, Gender: Asia, Male Agency: Wasatch Adoptions
Details: "This sweet little boy has Hemophilia (A Grade). His caretakers say "He is so lovely, likes to play with other kids, he likes to put on new clothes, likes to play with aunt, and its interested in the toy car which he can move. He is handsome, extroverted, and active. We all like him and hope there is someone familiar with this disease who could love and care for Kyle so he can lead a full life with his very own forever family."

As of April I know:
- That he was abandoned at 8 months old in a hospital in Shanghai with a brain bleed due to a fall from a bed, and intramuscular bleed due to IM injection, as well as respiratory infection and anemia.
- That he has had many bleeds so far including GI bleeds and shoulder bleeds.
-That every report I have read so far from the hospital shows him as malnourished and with respiratory infections.
- That he does not sing because "in the instution they do not sing or play music"
- That he likes to play with the other kids, and his aunties and caretakers, and seems behind in some areas only because he cannot attend preschool because of his Hemophilia.
-That he is not allowed to go outside to play because of his Hemophilia.
- MOST OF ALL I KNOW THAT I LOVE HIM AND NEED TO GET HIM HOME AS SOON AS POSSIBLE!

Wednesday, July 8, 2015

Time Flies....

I cannot believe as I have finally come back to this blog how fast time has gone by and how much has happened since my last post.  I am going to do a fairly quick update and then I would like to keep this blog up to date so I can focus on Hemophilia and our daily lives with it for others to read!
So....all was going fine for both of my boys after my last post about their new Ports.  I have been easily and successfully infusing them at home through ports 3X a week and it really has been a very easy journey Hemophilia wise although we have had a few bumps in the road that are Hemophilia related.

But, In October 2013 our lives were forever changed.  My biological son, Max, at the age of 4 was diagnosed with APML - Accute Promylecytic LEUKEMIA.  I cannot even begin to explain the feeling of that diagnosis.  Nor can I beging to explain the heartache, the pain, the chemo, the journey as it would take way too long.  I can  sum up the past two years.  I lost my job of 17 years basically because I had to be home caring for my son with Leukemia.  That is another story in itself.  My mother, my lifeline, the other "parent" to my children...battled Lymphoma and won...and then she died during Max's treatment in February 2014 from a stroke.  I have walked through the past 2 years in a complete daze honestley. 

I am happy to report as of today:  Max is cancer free and probability of recurrence is very very low.  I have tried to restart my career and started a new job in January 2015- although its been a struggle without my mom's help with the boys.  BOTH boys are doing incredibley well and thriving.  Max will start First Grade in the fall, and AoZhen - who now prefers to go by Jake- will start Second grade!  He has been absolutley a blessing and we have had no adjustment issues really at all.  He does suffer from ADHD, but at this point just needs meds to sleep.

Also....I have gotten engaged - oh yes- also I was divorced not long after my last post!  I now live with my boys, my fiancee, his 2 kids 16 year old  girl and 19 year old son.  And my beautiful 19 year old daughter is also home with us when not in college! 

SO- my goal now is to keep this post up to date with our Hemophilia journey.  I hope and pray that is the only medical issue that is going to be addressed from here on out!  Max still deals with autism, but really is doing pretty darn well and is on the mild side of the spectrum.

I will post some pictures later and update more as the days go on.  We have struggled with numerous Port infections...only with Max.  Max is on his 3rd Port at this point.  We used the port so much during his cancer treatment I believe that is why.  We have gone through trying to learn to Peripherally stick the boys veins so we can live life without these ports some time in the near future.  Thats been a struggle also- even with a homecare nurs coming to help.  But, I still try and sometimes have luck hitting their veins and giving factor that way which is a great feeling!

More to come!