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!

Max has his port now!! YAY all done!

So, we are all done with port surgery's on both these kids!  WOOHOO!  Max I made sure everything went as I needed to go as Ao Zhen's had some mix ups.  They did not want to leave his port access after surgery (some docs don't do, and some do).  I had NO idea of this.  This means when I am supposed to go home and factor him 2 times a day for 5 days...what am I gonna do???  Take him to be stuck in the vein again...oh no way!   So I insisted, and they did access Ao Zhen's thank goodness.  Max, I made sure all ducks were in a row because I know this surgeon does not like to leave accessed.  So I got them to put a PICC line in Max while he was under.  This allowed them to draw blood for levels from the PICC, and through the catheter they could give him factor.  And of course has been a god send since I have gotten home and been able to infuse him so easily.  Poor AoZhen got stuck way too many times when he had his done, it was ridiculous as the point of the pick is NOT to stick veins!!  But hopefully anyone reading can learn from my experiences!

This Port thing is NOT as easy as I thought!

So, all seemed to be fine after Ao Zhen's Port surgery on April 10th. Although that wasn't quite what I expected either. He ended up getting stuck with IV's and blood draws much more than he should have as they did not "access" the port during surgery, and there was a lot of back and forth between doctors and surgeons as to wether we could even access it (which means basically leaving a needle in it, with a line attached so that I could easily give him the Factor he would need for a week following the surgery at home)prior to leaving the hospital. If not it would have been a nightmare as he would have had to be stuck 2 X a day at home for 5 days. That did not happen and they did end up accessing it for me. So , all was well, Port looked great. Until last weekend- Saturday April 21st I noticed his suture line was oozing a little and was a little more open at one end. He also had a fever of 99.2 which is scarey with a port. They told me not to worry about it that night unless he fever went over 101 or the actual Port site (which is above the suture line) started looking red or inflamed. Sunday, his fever was gone but the wound was open more...looked really bad and they told me to take him to Hopkins ER.

So...they admitted him to reopen the next day. There was a chance that the whole port would have to be removed and replaced. He got an IV stick to place a catheter in, and a blood draw that night to do blood cultures because he got a fever again of 101.8. What a nightmare. So, the next day they put him under, opened him back up cleaned up the wound which had a hematoma under it and thank goodness were able to leave the port in. The culture of the wound site showed staph infection, so he was put on IV antibiotics. We had to stay in the hospital until Wednesday, when the blood culture came back clear and everyone was comfortable sending him home. All of this after another catheter had to be placed, because the other one had come out of the vein. This poor child was stuck so many times its ridiculous. And the whole point of the Port was to avoid the whole process of trying to probe and torture him to find veins. Plus the fact that again the port could not be accessed and he had to receive Factor until Friday...so they sent him home with an IV in his hand that came out Thursday night..so we had to go to the ER again Friday night for more sticks- and the sticks didn't even work. They absolutely could not get a vein without it blowing, so we just gave up and had to make the decision to skip Friday's factor dose. Its really been a disaster...such a disaster that I am going to wait for many more months before having Max done. Here are some pictures of my little trooper. He was such an awesome and brave boy in the hospital. He really is such a good patient...all the nurses were apparently fighting over who got to take care of him every time there was a shift change.

Ao Zhen has a port!

Since Ao Zhen seemed to be hurting himself much more often then Max, we decided he would be first in line for a port. We had the surgery last Tuesday April 10th at Johns Hopkins. It all really went well. He came out of surgery after an hour just fine...no pain. The hospital stay - we were in there for 2 nights- was a little difficult as he was ready to be up and moving and was connected to an IV for most of the time, so that was tough. But he did wonderful. We were discharged Thursday, with the port accessed as he needed 2x a day infusions that I needed to do. He went to Hopkins Tuesday the 17th to have port de-accessed, then re-accessed and infused for the last time for his surgery. We will start next week with a home care nurse coming to help me do prophy 2X a week. Max is scheduled for May 22nd.

So long, with no posting!

My beautiful son has done so incredibley well fitting in here that there has been nothing to say, really!!!! I on the other hand have had my hands full with him and my 2 1/2 year old - like all of a sudden I have twin toddlers and am completely exhausted.
Whatever I think about AoZhen's past, knowing it wasn't good....he is just so strong and sweet and in love with all of us. We have gone through some stuff...tantrums, etc. etc. all the "typical stuff" that adoptees would go through. But he has been the biggest blessing and is the sweetest most loving little boy I have no words to explain. He takes care of everyone...he wants to wash Max off when he has a dirty face, he kisses Max's owies...he is the best big brother. He wants to clean everything, which is great, but I have had to get him to tone it down a bit because he is a little obsessive. I am thinking it was because he actually had a mom for 8 months that he has been able to bond so well to us. I get I love yous and kisses and they were kind of "faked" at first but now I know they are real. I am so lucky and so blessed.
As far as the adoption part of him and the emotional aspect, so far so good. Now we are dealing with hemophilia and IV injections and finally the decision to put a Port in my guys to make their lives and mine easier. Maybe the orphanage wasn't as bad as I thought...he is really perfect. Hopefully my posts from now on will be mostly Hemophilia related and I don't have any real issues with adoption problems, which I know could come at anytime. I am not saying everything is perfect...I have 2 kids 18 months apart, there are the normal squabbles and fights. But I feel so lucky I can't say it enough. I don't know what the future will hold, but it will have a lot of love. He has even started daycare....he had too. He was so smart and so bored here with me on my maternity leave day after day- I started him 2 weeks ago. All is well accept for a few falls which caused some Hemophilia problems.
Thank you God for bringing this child into my life.

Home!

Well, we have been home for a week....and it has all gone better then I expected. I am just completely exhausted- it is like all of a sudden I have twins, and toddlers at that! Its a little harder then I thought, but just as wonderful as I expected. I got sick on the plan ride home...never stopped throwing up, on the plane, through customs, immigration, then finally security who called the paramedics (which just ended up being very embarassing!). I made the flight from Chicago to BWI filling up all 3 of our vomit bags- what a nightmare. Thank god for Alexis, thats all I can say!
Here is our Gotcha Day Video in the meantime....
http://www.youtube.com/watch?v=UKyUlkRjmXg&feature=context&context=G27f3643AUAAAAAAAAAA

Visit to Safari Park/Zoo...

We had a chance yesterday to visit the Safari Park Zoo here. It was fantastic and actually a very relaxing day. After riding the train through the "Safari" seeing all the animals close and personal...lions, tigers, monkeys, elephants, zebras, hippos, rhinos, tigers, giraffes and more..it was so cool- we went through the zoo part where we saw the many pandas and baby animals- we got to feed a bottle to a baby white tiger- which to me and Alexis was a really incredible experience. We also fed giraffes and just so many other things. It was a really great place and nicely set up for the animals which of course made me happy.

Today we have a free day, which is good because Alexis is sick..has that China bug, so she apparently has had water, or ice or contaminated vegetables or something. Started her right away on the antibiotics that we brought. Tomorrow we have our last appointment, our Consulate appointment. This is the final one...and this is it, he will be mine, no turning back! LOL!
The next day we will take a 3 hour train ride to Hong Kong, stay overnight and then fly home the next morning. I cannot wait! I am SO homesick right now. Got to skype with my little Max who is talking and talking and singing even more than he was when I left, which is such good news with the whole autism situation. Hes doing great and it made me so happy but I miss him so much.

So, the first pic here is another sweet success we have had with Ao Zhen. He is actually taking baths and happy about it! YAY! That is something that he was completely flipping out in the beginning about and normally I think takes longer for these institutionalized kids to deal with. You may also see the big bruise on his upper chest that he came to us with. Now, he has hemophilia so I hate to assume the worst since they bruise so easily, but the location of it makes me wonder as he has also had shoulder bleeds, if they are pretty rough with the kids. He is also going to sleep pretty easily now, only about 5 minutes of crying. There is still a lot of work to be done but I see improvements daily. We only had one melt down at the zoo yesterday, which is a record! And then of course his nose started bleeding again, so all the Chinese were just standing there looking at us like we were crazy!