Saturday, May 31

Family get-together/ Discovery launches

My brother, his wife, my parents, my sister, and our family all got together at the house on Thursday and spent time with Elizabeth.  She flies home tomorrow but we've really enjoyed visiting with her!

 

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My Jello desert :)  a layer of blue jello,          Kristopher swimming

a layer of red jello, a layer of cool whip,

and some blueberries and strawberries. 

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Mike and Kristopher in the pool                   Mom, Elizabeth, and Brianna

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Emma and Micah liked the kiddie pool a lot more than Brianna had before.  They played in the big pool for a little while and then we filled this one up with water from the jacuzzi.  WARM !

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But... Brianna kept coming in and out too.  She had to love on "her babies" :)

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My brother, David, his wife Erin, and               Brianna and Daddy

my dad, Bruce

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Elizabeth and Brianna                                     Look at that face (and that tummy!!)

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SMILE!                                                         Doggie Paddle!

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3-2-1- BLASTOFF!  The shuttle Discovery made liftoff today!

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All the Twins

Well, Minnesota twins that is...

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And some play time outside:

003We brought Brianna's walker outside and practiced walking in the driveway for a little while.  It sure is difficult to transport!  It does fold, but piling it up on the triple stroller seems to have worked.

 004  Don't you love our plush beautiful grass?  I have to say, I'll trade the SHADE for the grass any day! 

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022Micah liked the swing best when it wasn't swinging.  Weird, since he pretty much takes all of his naps in the swing inside!

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029    Kristopher picked up all the branches as I trimmed the Azalea bushes- he piled them all up in the can, great job buddy!

 

 

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This one's one of my favorite pic's of Brianna.  No matter that she's covered head to toe in dirt, I love that the joy on her face is captured!  Plus, it's pretty cool that it focused well on her grin with the movement of her hands and feet ;)

037 Ahh... all clean :)

Friday, May 30

the meds- update

Blowing in her face didn't work. All we had was a mommy that wanted to pass out after hyperventillating. Plus today I woke up sick. Glad she's the one that gave it to me or I'd be worried I shared germs last night. Aparently that's not our answer :( Tomorrow I'll try some strawberry syrup. I did put our "giggle ball" by V-tech on her chest this morning and push buttons on it and she gagged the meds down without screaming. I think she thought I was crazy instead :) Tonight she was crying before I even sat down to give her the meds. She saw me coming. What can I say, the kid's smart! Anyway, thanks for the suggestions- keep 'em coming!

EMMA'S HAVING SURGERY SOON!!

The short version: I have no voice, so if I was to call you, this is what I'd say ;)

Dr. Q says that the T&A surgery will likely decrease the risk of surgery but will NOT solve the problem (we knew this) with the PH.  He wants it done in St. Pete (where he works) so if anything was to happen he is there.  He called our local cardiologist and they came up with this plan together (after meeting with us).  He expects this will be in about 2 weeks.  Then, he wants to FIX HER HEART 2 WEEKS LATER!!!!!!!!  We are still waiting on a little info and an opinion from a surgeon out in WI, but unless what he says is contrary to this, then this will be the plan. 

 

The long version:

We drove to Orlando, waited a little while, then went back into a room.  The nurse practitioner that works with Dr. Q came in, introduced herself, and we talked about some things.  Emma has a complete AV Canal.  (yes, that's right)  How long have you known about it? (we adopted her 3 mos ago from Ukraine, so about 3 months)  *light goes on, Ohh... that makes more sense* (she didn't actually say that tho! LOL)  When do you expect we'll do surgery?  (um... awkward silence... We've been told she's likely inoperable but Dr. Q wanted to meet with us so we're here.) OH! Yes, she IS five... wow, pulmonary hypertension, wow, look at those numbers, yes, it's like the old days, isn't it? Ok, well.... um.... she's beautiful! (um... thanks?  more awkward silence... )  NP quickly exits the room... somewhere in the middle there she listened to her chest.  Maybe she should have looked at the back page of the chart (it's only 4 pages) before coming in?  Then she wouldn't have felt like such a heel to have asked someone that's been told their kid's gonna die when it's getting fixed??  Just a thought anyway...

So... I was pretty close to tears before the doctor ever came in.  Not that she did anything wrong- I wouldn't dream of suggesting that there was anything I might have done differently in her shoes.  But in this case, yes, it would have been helpful to at least flip through the charts.  I felt like crap.

Dr. Q comes in, says hello, we reintroduced him to Brianna and reminded him who she is.  She liked him right away, said 'hi' and then got back down to play some more.  Yes, I went against every rule in my book and let her play on the floor in the exam room.  I figure there aren't TOO many germs and nasties in a cardiologist office.  If you disagree please don't tell me about it-- it's already been done! :)

Then Dr. Q sat down and said let's discuss Emma.  Explained how the PH rises when the heart is under stress, that the veins constrict as a coping mechanism and that with Brianna this likely also happened but she was so little that it immediately went back.  But with Emma it might not go back so much.  Or not at all, we don't know.  He explained the PVOD (see previous posts for explanations) and that it could be difficult to recover from surgery with this.  He said she's "still in the window" and is still considered operable right now! 

We brought up the T&A, told him she's been recommended for it and we were waiting on cardiac clearance.  I asked him about the correlation between the heart, PH, and enlarged tonsils/ sleep apnea.  He said YES, there is a connection!  He said there's especially a connection when there is no underlying defect.  I agreed, but of course had one to pull out that a 'friend' had been told her son was inoperable- had a heart condition and PH.  After the T&A his risk lessened and he had a successful repair.  He said YES again, and agreed that he'd like to have the T&A done before surgery since we know she needs it.  He just had to figure out how to get an anesthesiologist to DO it.

Next he said that of course the heart surgery will be high risk.  When we had Bria's done there was about a 2-4% risk factor, 96-98% success.  With Emma, it's much more drastic, more like a 20% risk, 80% success.  Still... that's EIGHTY PERCENT saying she'll be ok!  That's enough for me.  Without it it was again confirmed to us that she will have a short and difficult life.  Her heart will soon fail and she will go down hill quickly.  With a repair she has an 80% chance at a longer and HEALTHY life.  Yes, 20% is big, but that's in contrast to 100% if we don't do surgery.  Sounds good to me.

We told Dr. Q that we've sent Emma's records to a surgeon in WI, and he knew the surgeon :)  Well... knew OF him anyway.  He was glad that that surgeon will be able to look over them and I am looking forward to hearing what he says about Emma.  Hopefully we'll hear back in the next few weeks.  Unless what he says is contrary to the current plan, we will continue on from here.

So... 2 weeks from now we can expect Emma to have her T&A and (I need to call the office and let them know that these two things need to be done too!) her ear tubes and ABR done.  Then 2 weeks after that we think she'll have her HEART REPAIRED!!

One last thing.  Someone asked me why we didn't ask Dr. Q about this first?  Well, we tried.  In April we had an appointment for Emma to have surgery, then when the cath didn't go well it was canceled by the cardiologist.  Then we had the appointment that ended up being a dud on the 12th of May.  So... why????  We feel like God had something else to do first.  He needed us to know about the T&A (which was only on the 20th of May) and maybe to hear back from this doctor in WI.  It's all in HIS timing.  He doesn't disappoint or keep us needlessly waiting.

THANK YOU to everyone that has held our family up in prayer.  GOD HAS ANSWERED OUR PRAYERS and provided a surgeon that is confident and willing to operate.  It helps that he's only 3 hours away too :)  Please continue to pray for Emma's health- that she will stay healthy, her T&A will be scheduled quickly, she will have a smooth surgery there, and that each step after will be ordained by God himself in His timing and will for her life.  Please continue to pray for our family as well.  We are rejoicing that it looks like Emma will be staying with us a while!!!!  Micah, Brianna, and I are all still sick.  Micah and I especially.  It seems that although I started feeling better my throat is taking over.  I've got NO voice now.  Micah is still raspy.  If he's not clearing up soon he may end up back in the hospital.  His breathing hasn't improved much despite the breathing treatments.  We're going to "step it up" and give them a little more often whether he really needs it that minute or not and see if that works.

God is good... all the time!

 

AND.. THANK YOU KERRY for keeping Kristopher for the day! He had a great time playing with the kids and can't wait to have them come here again soon! 

Off to the surgeon today

We're meeting with Dr. Q today to find out his thoughts on Miss E. and the possibility of surgery by him. I don't know what to think about it, really, as we've all but given up on having it done here. Of course it would be convenient... but would it be BEST?? We're headed to Orlando with all three little ones in tow so it should be an interesting meeting no matter what is said. I'm very ill-prepared for this both physically and mentally. Say a little prayer for us today, will you please?

Thursday, May 29

My kid hates me

For about 5 minutes every morning and 5 minutes every night Emma thinks that I am the devil himself here to torture her and send her into hysterics. It's called MEDICATION TIME. She's not sooooo bad when it's just the 3 regular meds (less than 1ml each) but when we add in the antibiotic every 2-3 weeks for 2 weeks it gets BAD. I have to hold her down, restrain every part of her, and choke it down. LITERALLY. I sit on the floor with my legs apart, her in between. I put my legs over her arms hold her face with one hand so she doesn't turn her head and let the meds run out. She still spits it in my face half the time. I have to 'pucker' her cheeks to get her to keep the meds in, about 1/2ml at a time and wait... and wait... and try to get her to swallow- and scoop it back in with my finger...

How do you give your kids that HATE medications their meds? I've tried the "shoot it to the back" method but it ALL comes back out. She spits it. Her tonsls are huge and I'd bet that doesn't help since it constricts her throat some. What do I do?? If you have an answer before, say, 8pm tonight, I'd love to try it!

Kristopher says the video lies

It starts with "you know the classic story of Sleeping Beauty." "NO! I don't know it, it's lying, that's not nice."

A very literal 4 yr old he is!

How's this for Inspiring?

So You Think You Can Dance... What a neat guy. Don't miss the ending, that's the best part!

Wednesday, May 28

Snuggles and Tickles x4

Wow, check that out- it's 6pm and all four kids are still in their flag shirts!  That's quite an accomplishment, especially for Micah! (Brianna's wearing a bib over hers, she was eating dinner still)

More pic's of the "big kids" (K&B) to come :)

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