Friday, July 19, 2013

Where Did the Week Go?

That week went quickly.  The boys are all caught up and back on a normal sleeping schedule.  I am getting there, but still tire out during the day.  We were blessed by five wonderful friends who provided us with a meal this week- thank you so much Janet, Mary, Sarah & Josh, Diane, and Jessie!  They were delicious and very much appreciated!

Monday our social worker came for her visit for Lena's 1 yr report and for Reid's 1 month report (a little early).  We enjoyed sharing about how well the kids are doing and talking to her about the trip.  We won't see her again until the end of December for Reid's 6 month post-placement report.  We celebrated Elijah and Jonah's 5th birthday and Lena's 1 year gotcha day!  Due to the hot weather here, 3 of our 4 t-ball/baseball games were canceled and re-scheduled.  We did get to watch Evan on Monday night at his baseball game.  He was glad to be back playing.

Tuesday I took Reid to Children's Hospital for his labs.  They had trouble getting the blood draw- they couldn't get enough from either arm.  The lead had to come in and she got it.  That was 3 tries though.  Reid handled it like a pro.   We then left and started heading back towards home.  We were almost half way home when Rick called and said that we were missing a second appointment.  Apparently there was some miscommunication there.  We turned around and headed back to the hospital where we met Reid's hematologist, Dr. Scott, for the first time, as well as the nurse I have been in communication with for quite some time, Sandy.   I learned that all hematologists have their own opinion and that they are all very different.  I re-learned some things I had learned about on the thalassemia groups I am on, as well as some new things.  They said Reid's spleen and liver are enlarged, but they also said they expected that.    I wasn't given any numbers besides his hemoglobin level, which was an 8.  That means he is more than ready for another transfusion.  They said his other numbers looked good. He said we could keep giving Reid the Ferriprox (said that is what the entire rest of the world takes) while waiting to get on Exjade, which is the medication that will help rid his body of the excess iron from the transfusions. He seems to support Exjade for kids and teens 100%  because he said the compliance rate for desferral is very very poor in kids and even worse with teens...which causes more problems than good. 

On Wednesday, Rick went to look at a 12 passenger van in a nearby town that a big family was selling.  We realize we need this sooner rather than later and this was a good price.  It is higher in mileage, but we are just hoping it will last us 4-6 years.  Rick liked it and because another family was coming to look at it on Friday, he felt we needed to be proactive.  On Thursday morning, he went and bought it!  We now have to sell our Dodge Caravan- our very first mini van.  We are now official owners of a Chevy Express 3500.  I am not looking forward to driving something so big, but I am glad we found something that can fit everyone.  We only plan on using it when we go places as a family and Rick will use it on days that I need to take the Sienna for doctor appointments out of the area.   

On Thursday, we went back to Children's Hospital bright and early for Reid's first blood transfusion.  He was low on energy- I could tell by looking at him.   We got checked in at 8:30 a.m.  Things went well other than the fact that the nurses were not able to get the IV with quite a few tries. We have one tough boy...kind of sad though how desensitized he is. After not being able to get it in either hand due to built-up scar tissue, they got it in his arm.  He was given 287cc's of O+ which ran for just a tad over 3 hrs. from about 10 a.m. until 1 p.m. with no reaction afterwards....they keep them 30-45 minutes to make sure the patient doesn't have any reaction to the blood.  Sometimes they have a fever or hives.  I found our his ferritan (iron) levels are 3,180...normal is 10-60.   His post transfusion hemoglobin level is 11. 

I signed the paperwork for Exjade so we can get started on that once it comes from the specialty pharmacy...we can't get this drug from Walgreens or Wal-Mart. We have our ophthalmology and audiology appts on August 14th- they need baselines yearly for Exjade, the chelation medication Reid will be taking.  We'll have labs again that day and the 2nd transfusion on Aug. 15th...that's 4 weeks from tomorrow's. I am not sure he can go that long in between. He was hypertransfused in China on the 28th and was 8 this week, just 3 weeks later, so I am not sure how he'll be able to make it longer on a normal transfusion. I am also waiting for a liver and heart MRI to be scheduled. I pushed for an ECHO for the same day since I have learned from the other moms of kids with thal that this is important.  We will schedule that for the same day as the liver and heart MRI.  Reid also had another blood test with his IV start to look at his genotyping for beta thalassemia. He also will have a urinalysis with each transfusion.

I always knew how important blood donation is, but after our first transfusion, I have a whole new outlook on it.  Thank you to every single person who has ever donated blood before- it truly is a gift of life and it is what is saving my son's life every month.

Next week we will visit the pediatrician and the dentist.  We'll get an order to run titers to check for immunity from the vaccines he has been given in China, to see if we need to give him some again or just pick-up where he left off.  We will also check his hemoglobin level on that day, 2 weeks from his transfusion.

Tonight we had our first family movie night- the kids will sleep in the living room in a big sleeping bag or on the couches.  They were excited for this!  Looking forward to the weekend and hoping for cooler weather. 

Sunday, July 14, 2013

Our First Weekend Together as a Family

I find myself forgetting the day before if I don't write about it that same day.  I'm sure that's partly jet-lag and partly having seven kids six years old and younger.   To start with a praise- Evan slept his first full night of sleep last night!  YAY!  Now to just get Reid and I to be able to do the same thing. :)    Say some prayers for Lena- this evening she came down with the fever. :(  I thought she was acting odd this afternoon...that would explain it.  Tomorrow is her 1 year gotcha day celebration too and we have our social worker coming in the morning for her 1 year visit and for Reid's 1 month visit (yes, a little early- just doing both at once).  

I'll start off with a some more pictures from Friday.
 Swimming at the lake.

 Posing so cute for the camera!

 Trying to catch bubbles!

 Hanging out with dad in the hammock!
 It was so cute to see Lena giving Reid a push on the bike. :)

Saturday we just hung out at home all day- it was really nice.   The kids played in the bounce houses- first the non-water one we got from a neighbor who outgrew it and then the water one- that one is not the easiest to set-up and take down, but they sure do love it and what a great surprise it was the day it showed up on our doorstep a couple years ago from my aunt.   Saturday night we had a campfire and made pudgy pies and s'mores.   Reid really enjoyed the pudgy pies!  
 Having fun in the water!

 Campfire time!

 Dad teaching Reid how to cook a marshmallow just right.

Today we had a slow start.  I escaped for an hour to go get some gifts, cake mix, and a few other things for Elijah and Jonah's birthday celebration.  I also picked up some pictures I had printed because I needed to put some of them on paper to be turned in with our post-placement reports tomorrow.   I finished those and made a couple of cakes.  Elijah and Jonah's birthday is really tomorrow, the 15th, but we started celebrating this afternoon because it is already the 15th in Ethiopia.   Elijah got to pick his meals today- he chose waffles, quesadillas, and Culver's.   Reid is so far not a fan of waffles and pancakes.  Lena wasn't really either and still eats them very slowly...who am I kidding though, she eats just about everything like a mouse.  Tonight we went to Culver's for dinner and the kids enjoyed that special treat that seems to only come on a birthday celebration or when we have a gift card.   We came home for cake and ice cream.

Tomorrow is another busy day- social worker visit, Elijah and Jonah are back to summer school, and Evan returns to baseball- his last week of games.  Tuesday afternoon, I take Reid to Children's Hospital for our first visit- I think we will have a lot of labs run and they will just start to try to figure him out.   Thursday we will go back for his first blood transfusion there- that will be a longer day.

Funny thing happened today- Rick was telling the boys to clean up and said it twice and Reid started singing the 'Clean up' song from Barney.  I think they must have taught him that in his school at the orphanage.  That came as a surprise to us. :)  

Rick is LOVING that Reid wants to be affectionate with him.  That was not the case with our other adopted children- at least not with Jonah and Lena.  It took A LONG time for Jonah and is still in process for Lena.  I am so happy that Reid seems to love his dad and likes to goof around with him and be tickled...he is SUPER ticklish.

What a wonderful weekend!

Saturday, July 13, 2013

Our first full day home!

Friday, July 12th- our first full day home.   We sure are enjoying the beautiful weather here, minus the mosquitoes.   We've spent a lot of time outside playing.   You would think that would be enough to make these kids sleep through the night...nope.  Our first two nights have been pretty rough. Evan has been so jet-lagged and can't sleep at all through the night.  Hoping tonight he can.  Reid has woken up crying the past two nights, which wakes up almost everyone else.  Even Jayce hasn't been sleeping well, although I shouldn't be surprised there- he hardly ever has.  It is taking a toll on me though.  Really hoping tonight is a full night of sleep without any melatonin.

Back to our first full day- I'll let the pictures do the talking.  Reid is doing quite well.  We are having to be stern at times, but overall he is doing great.  He is enjoying all of his siblings and they are enjoying him too.  He shouts out some Chinese phrases at us that I often wish I knew.  I can't help but to wonder, especially when he is mad....hopefully he is not swearing at us- probably best not to know.

These are the words/phrases in English I hear him use most often: potty, shower, Evan, Jonah, Elijah, mama, water/drink, hot, eat, and thank you.   He is even using some of the signs I had taught him, which is cool, though I am not sure he fully understands that his sister cannot hear him yet and that he needs to use the signs with her.

I am really overall so proud of how brave he is and how well he is doing.  Nighttime seems to be the time that is most difficult for him- pray for his precious heart and for all that he has left behind.

I promise we have boy sunglasses here somewhere- these are just the ones he finds and was wearing the first couple of days. :)
 Lena wasn't over there, but this is what I saw when I was coming down the hill from the bathroom- too cute!

So glad we got some family pictures with the kids in their big brother/little brother/sister t-shirts.


I love these flowers. :)

Friday, July 12, 2013

Bye Bye Hong Kong! Hello HOME!

Thursday morning we woke up before we needed to, got ready, and headed to the airport on a shuttle from our hotel at 8 a.m.  We saw a few other adoptive families in line at the check-in.   We got checked in- we needed to get new seats assigned because Evan and I were in row 25 and Reid was in row 43 since he was under a different name.   The check-in, security, and immigration process all went pretty smooth.  When we were headed to the gate, Reid got mad that I would not carry his super light back-pack (I had a very heavy backpack) and two other carry-ons already and Evan was pulling one too. He stood in one spot with his arms crossed and would not budge. I told Evan to keep walking and that he would come.  Nope...stubbornness prevailed and he did not move one step.  We walked back to get him- I gave him a little squeeze on the hand and he was not too happy with me.  He cried a little, but he needs to learn what is acceptable and what is not.  We then took the subway to the terminal and used up most of the remainder of our Hong Kong money on snacks and drinks.  We almost lost one of our carry-ons...Evan left it by the shop.  When we were getting in line to board, I noticed and we went back- thankfully it was still just sitting there.    We got in line to board the plane and met another family who is on one of the Facebook groups I am on for thalassemia- they were bringing home a little girl with beta thalassemia, just like what Reid has.  We made it to our new seats.  Evan took the window, I took the middle, and Reid got the isle.  The family in front of us was another new family to us, but one I have already been in touch with on Facebook.   They adopted an older girl who many of us have advocated for.  It is very cool to see these children we advocate for with their forever families!

 Views from the Hong Kong airport.

 Skyping with dad.

 Getting ready to go!

The flight left on time and was in general very smooth- minus a couple times in the beginning there were issues with the in-flight entertainment system and a few turbulent times.    Reid did very well.  He pushed the buttons on the in-flight entertainment system quite a bit, including calling the flight attendant to our seat once (I think she disabled his button after I told her he would likely do it often) and turning the light on and off a few times.  He has a very small bladder and needed to use the bathroom quite a few times.  He slept two chunks- maybe 2-3 hours each time.  The flight was 15 hours and when you are coming home- it just feels like forever. I slept maybe an hour or hour and a half total.  I watched quite a few movies.   Evan slept a long time- maybe 8-10 hours after taking one melatonin.   He ate practically nothing and drank very little though because of that.   When we were landing, he felt sick...just like last year.  I was not quite in time, but did grab one of the puke bags they have on the flight.  Most of it made it into that thankfully and because he had eaten nothing, it was just water.  We landed around 1:40 p.m.  Reid was looking exhausted.   We got our bags and headed through customs and immigration.  The lines were relatively short, which was nice.  We then got our big bags and dropped off our adoption envelope to an officer and headed through the doors to meet our family.  The timing was pretty perfect- they waited for us for maybe 10-15 minutes.  It was so great to see them after 2 weeks away from home- they were decked out in tye-dyed shirts that my mom had made, with balloons and signs.  Reid was a little taken back by all of  We took a few pictures and then headed to the vans.  My mom drove one and Rick drove the other.  We no long fit in one eight-seat mini van, which is unfortunate.  We have to drive two mini vans when we go places as a family for now until we can afford to buy a 12 passenger van and get rid of Rick's mini van.   Evan rode with my mom and got sick again on the way home.   We made a pit-stop for him and for a bathroom break for the other kids. 

 Views of beautiful Hong Kong from the air.

 Islands south of Alaskan mainland reminded me a lot of Hong Kong.
So close!

They even had shirts for the three of us!
 I am sure most people around were thinking we are crazy with so many kids so young.  We feel blessed!

When we got home, we took some pictures and Rick went out to get us some Papa Murphy's pizzas thanks to a gift card from my sweet friend and fellow advocate, Kelly!  Thank you sweet friend!  My brother took Elijah and Jonah to their t-ball game.  We ate and played outside with the kids.  We finally were ready for bed after everyone got cleaned up.  It was a rough night of sleep to say the least.  Evan was super jet-lagged and was wide awake from sometime after 10 p.m. until 4 a.m.   Jayce woke up crying once in the night.   A balloon went into the fan upstairs around 3 a.m. causing all the boys upstairs to wake up.  Reid cried for at least 30 minutes- I think it was because he was tired, but may have been a combination of that and being scared and maybe even grieving a bit.  It's hard to say.  I comforted him for quite awhile telling him in English and Chinese 'it's okay and I love you.'   I gave him and Evan a little melatonin.  Elijah, Jonah, and Landyn finally fell back asleep on their own.  Reid slept from 4 a.m. to 8 a.m. and Evan slept from 4 a.m. to 10 a.m.  I had a hard time falling back asleep and couldn't help to think about the kids still in the orphanage and the fact that these kids likely had very little comfort when they were sick, had a nightmare, etc.  I can't imagine the five years my son was there and who knows how many times he was sick, sad, or scared and not comforted like our biological children have been their whole lives. This is just one reason my heart breaks for the orphan.

 My youngest brother spent quite a bit of time outside decorating the driveway while everyone else came to the airport to get us.

 Playing in the yard.

 Trying to get a picture of all the kids looking and not making funny faces is quite challenging with seven kids.   We hope to use one of these photos for Reid's 1 month and Lena's 1 year post-placement reports (we are meeting with the social worker on Monday since Lena's  report is due this week).

 Family pictures!

 Jonah- I heard he was a bike riding machine while I was gone!
 A meeting of the minds.  Reid has been digging one of Lena's pairs of sunglasses- pink and all.

 Fun times!  This reminded me so much of the first day home with Lena.

Evan looked like a zombie when he did come down at 10 a.m.  He threw up again later.  Elijah woke up with a fever.  Praying that does not spread- Reid cannot afford to get a fever with his special need.  We will be visiting the doctor twice next week and I really don't want to have to make another visit or ER trip with him before then.  A fever can mean a significant drop in hemoglobin levels for a child with his special need.  Please pray for our jet-lag and for our sick kids to get healthy and for it not to spread.  I have had some stomach issues myself.   Please pray for a good night of sleep too.  Overall things are going very well and we are so glad to be home!  Thank you for your prayers for the trip and for safe travels.