Worst Days EVER

     The last eleven days have been a bit of a blur.  Isaac was admitted to the children's hospital on January 21st with RSV (respiratory syncytial virus) and pneumonia in bottom of both his lungs.  It hit us hard and fast.  Isaac literally was singing in the car and 20minutes later was slumped over in the grocery cart nearly blue. The pediatric RN in me stayed calm through the 103 fevers and persistent coughing, but when he hadn't had a wet diaper in 12 hours I knew we were in trouble...indeed we were.

     How & why Isaac got so sick so fast is kind of a perfect storm of events. First, the Down syndrome puts him at higher risk for most respiratory infections. All the tubes in his body are narrower & shorter, so any goop (official medical term) or snot that lines those tubes takes up more space & faster than in typical kiddos. Pair that with his lower muscle tone and the poor ability to cough that goop out and a kid with the sniffles becomes a kid in the emergency room on oxygen. Second, it has been just 4 weeks since Isaac's heart surgery. His body is still recovering giving him an even lower immune system. Third, Isaac is a snotty two year old that goes to Kollege with other snotty two year olds. You know the saying...when two or more toddlers gather together...somebody is going to get sick. While RSV can be pretty dangerous for babies, it normally causes just a bad cold in healthy older kids. Given Isaac's lower immune system and this being his probable first exposure to RSV, it hit him pretty hard. Fourth, put everything above together and the possibility of aspiration (swallowing/choking liquids into the lungs) as Isaac has been learning to eat & swallow, and you get a nasty pneumonia on top of an already nasty virus. Blammo...eleven day hospitalization!

     We were admitted on Monday afternoon and by Wednesday Isaac had 'crumped' (taken a turn for the worst).  For the next four days our medical team cautiously watched his oxygen levels while Isaac struggled to breathe, balanced different antibiotics with steroids, and spoke frankly to me about transfering my little boy to the Pediatric ICU. I am SO VERY THANKFUL for the prayers of so very many who covered us during those yucky days!  My mother tagged me out every third night so I could pass out at home, but in the mean time I was up for 60+ hours at a time and I didn't have the physical or emotional strength to forge any spiritual battles.  God Bless Facebook (who'd thought that would ever be said??!!) and those who took to their knees to fight for my sweet boy's life and comfort.

     Isaac turned the corner for the better on Sunday, day 7 of our stay and continued to improve until our discharge today. In fact, his flirtations with the nursing staff this morning caused quite the comotion!  :)  Who doesn't melt at a two year old in isolation blowing kisses from his hospital room window??

     

     I've added the series of facebook updates below for those who weren't receiving daily updates, and a few photos a long the way.  He was a pretty sad sack for several days.  And while he is still recovering at home, I am THRILLED to have my sweet smiling boy back!  And truly, truly hope that this will be the last of our Worst Days Ever.

 

Monday January 21st, 7:54pm

My sweet boy was admitted to the hospital today with RSV pneumonia. Super sad :-( Praying for a quick recovery.

 

 

Tuesday January 22nd, 3:14pm

Still pretty punky but feeling well enough for a sponge bath from a pretty good looking nurse (if I may say so myself).

 

 

Tuesday January 22nd, 6:15pm

Another nite in the hospital with my sweet boy. Hoping tonight goes better than last. So thankful for the power of the Great Physician & for those who are lifting us up!

 

 

Wednesday January 23rd, 12:15pm

My sweet boy is not doing so well. The pneumonia has spread & he his having a hard time breathing :-( Praying the medicines kick in soon.

 

Thursday January 24th, 9:05am

Another rough night, but my boy is finally breathing easier with lots of respiratory therapy, antibiotics, & extra oxygen. His kidneys ate having a hard time now, but I'm hopeful that will resolve soon. Thankful for the Lord's healing hand and so many standing in the gap for us!

 

 

Thursday January 24th, 3:15pm

After less than 6 hours sleep over the last four days, he finally is getting some rest. He is dehydrated again, but his kidneys are working well. Extra IV fluids will help. He still needs a lot of extra oxygen, but is working a lot less to breathe. We'll be here for another couple of days, but I think we are headed in the right direction.

 

 

Friday January 25th, 12:16pm

Day 5 in the hospital. Isaac slept for 27hours! He is so tuckered out from all the extra work of breathing. His xray shows the pneumonia is no longer getting worse, so hopefully that means we've turned the corner to getting better. We are in isolation & he is scared of every person with a mask that comes in the room, but he feels safe when in my arms or lap. Praying that my sweet boy feels the Lord's healing arms around him too!

 

Saturday January 26th, 9:46am

Day 6 in the hospital. Isaac didn't have a good afternoon yesterday & was started on additional antibiotics and iv steroids. So far they seem to be working. He had a peaceful night and drank several ounces this morning. He is still on oxygen & is starting iv nutrition tonight because he has gone so long without food, but I'm hopeful that the light at the end of the tunnel will be seen soon.

 

 

Sunday January 27th, 9:38am

Day 7in the hospital: the frustrating news is that Isaac needs more oxygen & the steroids for his lungs made his blood sugars sky rocket. Good news is that the fevers & rash seem to be resolved and he is taking some fluids & applesauce through a syringe. Please pray for his little heart...he is so very traumatized by this all. He doesn't understand what us happening & can't tell us what he needs. But I know the Holy Spirit can comfort beyond human words.

 

Monday January 28th, 9:17am

Day 8 in the hospital: Isaac has turned the corner!! He had three one-hour periods yesterday where he was up & playing...he drank an entire can of pediasure & two cups of applesauce! He is breathing better & only needs a whiff of oxygen. Isn't it wonderful?? THANK YOU to all who have been praying...I could feel waves of hope yesterday and knew our Healer was at work. We still have several more days here, but we are officially headed toward health!

 

 

Tuesday January 29th, 11:11am

Day 9 in the hospital: Isaac continues to improve! He was awake most of the day yesterday & took normal naps. He even played with a bucket of toys for awhile while cooing & practicing his signing. His lungs are still junky but we hope to wean off the last of the oxygen today. Thankful for the Lord's covering hand over us!

Finally taking some solids

 

Getting respiratory therapy on Momma's lap.
Chewing on his string!!

 

Wednesday January 30th, 11:15am

Day 10 in the hospital: Isaac is officially off oxygen. Yeah! He was so happy to get those tubes out of his nose. Tonight should be the last night of iv nutrition, so we are working hard to push orals again. He ate several peices if his precious Pirates Booty today so I am encouraged. :-) Because he's had such a rough ride, we are approaching discharge slowly, but hoping to be in our own beds by weekend.

A visit from a 'music therapist'

He was dancing in his highchair!

Healthy enough to 'jump' off the bed to Momma

Ahhh...hugs

 

 

Thursday January 31st, 10:06am

Day 11...HOME!!!

 

Thursday January 31st, 2:15pm

My sweet boy is sitting on our couch watching Praise Baby and munching on his favorite chinese crackers. It's the way it's supposed to be again. Happy.

Twenty-Three Weeks (plus one day) Together

Isaac & I are cuddling on the couch together today getting over the (what I hope will be a VERY quick) virus that has hit his little body. It's the tragic downfall of being two and being in Kollege.  :(  But a wonderful excuse to snuggle up together...and let our Healer work his power through Tylenol & Elmo.

This video of him dancing this week to Gloria Estefan, however is classic Isaac. I am particularly fond of his foot-work around the 2:15 mark and his "snapping" (yup...he got that from my side of the family!) around 3:00!  It's a little shaky at the beginning because I was laughing so hard, but you can see this boy has got MOVES.  It thrills my heart that his joy comes through his body.  Clearly, sometimes it just has to come out!

 

 Warning...if you are unable to stomach tiny Asian cuteness dancing to Latin music...you may want to turn away.

 

Twenty-two Weeks Together

     This was our first official week in our new normal. It's weird to think that the schedule we have now is not temporary. This is our life now...and will be for the foreseeable future.  There is no next step to get to, we just live life together...

 

     Isaac is starting to develop a sense of humor, or at least picking up on mine. He just has a lot of little quirks that crack me up: If I'm laying on the floor to play with him, he'll crawl up under me and present his chest to be tickled OR pull up the back of my shirt to 'tickle' me. I'll feel the scratch of his claws...I mean cute little finger nails (I swear I cut those things every other day!) and hear a high pitched "ticka-ticka-ticka" as he squeals at the power he has over me. It is too adorable. He also thinks it's the funniest thing ever to pretend to pick & then eat my eyelashes or arm fuzz!  That is a little more on the disturbing side, but super cute all the same. If he is trying to sign something that requires two hands and one of his hands is busy (usually with a cracker), he'll use MY free hand to finish the word. (Lazy bones!) I think that process alone solidifies our attachment!  And for whatever reason, when Isaac is playing in my sock drawer, the nylons are particularly fun. He'll carry a knee-high stocking around for hours stretching it and chewing on it. (Should I be sharing this about my son??  Does is cross some weird line somewhere??) Yesterday when I slid on a pair of knee high stockings before my socks, Isaac was royally offended and chased me down the hallway yelling & attempting to bite my calves!  (I was going to say, this is probably not something I'll put in his baby book, BUT half the known universe has access to this site, so...).  He has also taken to 'singing' during song service at church. He claps right along during Praise, which of course is A-DOR-ABLE. But recently during Worship, I've heard snickers behind me, only to find my son leaning over my shoulder with his mouth WIDE open in an apparent attempt to mimic the person worshiping behind us. I won't lie...the whole scenario kind of breaks the reverent spirit of everyone near our row!  What a little ham!!

 

     Thankfully, Isaac is sleeping through the night in his own bed again. He is quite the mover and spinner in his crib and I'm never sure what contortion I'll find him in when I peak in. Recently, he has taken to accidentally sitting up while he is turning over in his sleep. I'll hear a pitiful cry coming from his room, where I find him moaning in his sleep, sitting straight up and apparently stuck, unable to lay back down again. It happens two or three times per night and I literally poke him, he falls back down and goes back to his sweet little snore. :)

Sound asleep!

Taking charge of the 'baggie situation' at Gramma's house

Making some calls...



I'm embarrassed to think how often he sees this pose in the house...

Getting ready for the big Packer game.
He can sign "Touchdown" & "GoPackGo"...which was useful in the first half of the game! Not so much in the second half...

 

Five Month Update--An Interview with Isaac

Happy Family Day, Isaac!!!

We've been a family for FIVE MONTHS!

 

Isaac, can you tell us what you thought of the holidays?

That Christmas-thing is something else!  I thought we just put a tree in the house, but nooooooooo. We went to church in the middle of the day with Gramma (and Momma made me wear a silly hat!), then my aunt and uncles and cousins came over for dinner, then we got to rip paper and boxes, then we spent the night at Gramma's house, then we ripped more paper in the morning too! THEN, there were new toys at my house!  It was pretty amazing. I spent a lot of time just sitting with Momma, cuz I didn't know what was happening next, but my cousins sure did. I think they are going to show me how a lot of things are done around here.

You must have gotten a lot of new toys. Which one is your favorite?

I got a whole zoo! And I can show you the names of all the animals, except the flamingo and the koala. Momma says it's a bird and a bear, but I don't think that's right...they look different then the other birds & bears do.  I also got a bubble machine!!  That's my favorite. Sometimes Momma makes it rain bubbles when I'm in the bathtub...that is SUPER fun!

How did you feel about your surgery? Are you fully recovered?

Yeah...I didn't like that so much. We got to go to the special doctor's office with the whale on the wall, but then Momma was wearing a funny net on her head, then I had to take a nap on the big table when I wasn't tired, and then when I woke up Momma wasn't there. The lady that put the glowing band aid on my finger was nice, but I didn't know where Momma went and that made me sad. When Momma did get there she wasn't allowed to hold me the way I like BUT we got to watch lots of Elmo, even when we got home. My leg felt better at home and I had lots of energy, but I REALLY wanted to make sure Momma wasn't going anywhere so I made her sleep with me for a long time. That made me feel better.

 

Any new foods that you are fond of?
I kind of took a break from eating after my surgery. It was too much work. Now Super Grover helps me eat and we sing songs about "unleashing my powers of observation". I don't know what that means, but I like it when Momma and Super Grover sing it at the same time, then I take lots of bites of my food. Gramma brought me a GREAT BIG BAG of Pirates Booty after my surgery...that was YUMMY.

You are at Kollege four days per week now; how is that going?
Good!  My therapy friends brought me a special chair so I can sit with my friends at the big kid table and not in the highchair...that's for babies. I also have a special picture board so I can tell my teachers when I want to play or eat or which song I want to sing during picture time. The board helps so I don't have to bite people to get their attention. Momma says that is a good thing. I also play a fun game with my friends---they build the blocks all the way to the sky, then I crawl as fast as I can and knock them all down!!  We all laugh and then we do it again. We have so much fun, our teachers even help!

Anything planned for the next month?
Um...I don't think so. Momma says we have to find our new routine now that she has to go to work and I go to Kollege, so we stay home on our days off and spend lots of time together. I like that part...then I hug my Momma's face!

Isaac at Kollege

     When Isaac is at daycare I have to guess at how he is interacting with the other kids there. I always get a good report from his teachers and he seems well liked by the other kids, but really...how do you really know?? Now that he is there four days per week, Isaac's therapy friends are meeting him there to work on special projects together (and to be my spies!). I got this report from his Speech Therapist this week.  It was too good not to share publicly!

 

"Isaac did really well at daycare today and actively participated in all activities. The staff was very nice and asked a lot of great questions about how to facilitate his language development. He consistently said "uh" in imitation for "up" when we were stacking blocks. He is also doing a nice job using his pictures to make choices, imitating signs, and did a nice job interacting with another little boy during a book reading activity with me. The little boy would say the picture in the book and then Isaac would show him the sign and then the little boy would imitate Isaac's signs. It was really cute!"

 

Good gravy, I wish I had a picture of that!!  Not only has he learned English AND Sign language in just a few months...he is teaching it to others!!  And...this is the part that tugs at my momma-heart...he has a little friend. *sniff* He isn't alone at Kollege. He has connected with another little human and they read & 'talk' together. It's just too much to take in. I wonder if they sit next to each other at lunch or stack blocks together too?  And the cherry on the top...this little friend of Isaac's is growing up with special needs being normal in his life. He will always have a gentleness for those a tad more vulnerable than he.
 
Oh my goodness...I just flashed to a Star Wars sleep over!  Oh, I love this boy!!

Twenty-One Weeks Together

     We've had a really good week!  For having had our first attachment road-bump, I think we did OK. Praise the Lord!  By New Years Eve, Isaac was sleeping on his own through the night again. I LOVE cuddling with my boy...but 3am is an ugly hour for this momma!  As for the eating strike, that is taking a little more time, but at least we are back to only needing Super Grover with us at meals and Isaac is again asking for food during the day. Hallelujah!  He is just so little, the not eating routine really made me nervous.  But I am truly thankful for the Lord's grace and wisdom to see this little family through this and whatever may lay ahead. 

 

Here are a couple of note-worthy events through the week:

• We had our two week follow up with the cardiac surgeon. The doctor was SUPER impressed with how well Isaac is doing and with how wonderful his post-op echocardiogram looked. The hole in his heart is totally patched up and the ventricles of the heart, that had been enlarging with the extra work load, are already starting to shrink back to normal. Hallelujah!  We'll follow up with a local pediatric cardiologist a couple times this year, then annually for the next 5 years or so just to be safe. No more trips to Seattle. No more surgery. This boy's heart is healed!

Getting his color on while waiting for our appointment

A not so flattering photo during his echocardiogram
(He was focused on watching Elmo that I was balancing below the camera)

 

• Isaac's Endocrinologist called to say that his hormone levels that had been initially elevated are now totally normal and no medication will be needed.  Yippee!! Hormone problems are super common with Down syndrome, so that we aren't on ANY medications for ANYTHING is kind of a big deal.  (He also said there were some wild inconsistencies on Isaac's blood count that indicated that he either had several different types of cancer, a rare middle-eastern form of anemia, or needed an immediate blood transfusion. Um...excuse me?  Thankfully, he thought it was as crazy as I did and a quick recheck confirmed that Isaac has no middle-eastern cancers, nor does he need an emergent transfusion. We took TWO stickers from the lab as compensation for emotional trauma of it all. Oh-yeah-we-did! )

• Two more teeth! He has averaged a new tooth every 3 weeks since he's been home. Good gravy. For those that have had front row seats to a local performance of The Lean Mean Asian Biting Machine...sorry, he's up to 10 teeth now.
 
• The cutest thing...both Isaac & Gramma have had a cold, and Isaac has learned to mimic Gramma and fake cough into his elbow!  It's a sad commentary on how bad Gramma's cough has been, but absolutely hilarious to hear "cough-hack-wheeze" coming from the adult in the room and this tiny little "caha-caha" muffled into the back of Isaac's forearm. He's a smarty-pants that one!
 
• I think I can proudly announce that Isaac is officially saying BYE-BYE! It's his first word!! We've been practicing our B sounds for quite some time and Isaac has gotten to be an expert at making the B sound, but hadn't actually formed a word with it. Through the day, in the car, in the grocery store, wherever, I'll bust out with "Ba-ba-ba-BOOK! Ba-ba-ba-BALL!  Ba-ba-ba-BYE-BYE!" (I'm sure the people in the cereal aisle enjoyed the free entertainment). Isaac would "ba-ba-ba" with me, but then sign 'book', 'ball' or 'bye-bye'. Points for effort, but not quite what we are looking for. Then last Sunday evening we were saying bye-bye to the bath water and Isaac initiated "bye-bye" with his hands AND words!! It was appropriate, initiated, and repetitive. I was THRILLED, but I didn't want to scare him so I held him at my shoulder so he could say bye-bye...and so I could cry. His little world is opening up. The frustration of head-banging, all the work of therapy, and most importantly the prayer for the Lord to move is ALL for something...so we can say bye-bye to the nasty bath water. Amazing! I'm so excited to hear what Isaac has to say as his words develop!!!

• I suppose the biggest event is that I am officially back to work full-time (4 days per week).  I have been so unbelievably blessed to have FIVE MONTHS together with Isaac. While the balance of part-time work since October has been a bit overwhelming at times, I know I am in a elite group of working moms that have had extensive time with their new child. I am so very thankful to the management over me at my job--they didn't have to be flexible, and they were...and continue to be. And of my Heavenly Father; this has been another reminder that He is our Provider in EVERY way. When I couldn't in my natural mind figure out how on this green earth I was going to get ANY time off OR have an (much needed full) income during that time away...in hindsight, I'm embarrassed that I wasted any time even considering the issue. God miraculously provided every minute and every cent we needed together...more than I could have asked for or imagined on my own.   "He is your praise; he is your God, who performed for you those great and awesome wonders you saw with your own eyes!" Deuteronomy 10:21 

Helping make cookies

Apparently, you can get to Narnia through my kitchen cabinets...

Found a new way to watch football!

Too tired to hold his head up.

How sweet is that face?!

Happy New Year!

     My mother immigrated from the Netherlands to the United States when she was just 5 years old. Unfortunately, in post-WWII America, more emphasis was put on cultural assimilation than preserving native traditions. So while knowing she was Dutch was a fun factoid that came in handy for school projects and random family trivia, I didn't grow up celebrating my Dutch heritage. Now that Isaac is home and he has introduced Chinese culture into the family (Isaac gave training-chopsticks to all his cousins for Christmas!), I asked Mom to help bring some Dutch traditions back into the fold. It's important to me that Isaac grows up knowing that being Chinese is exactly who God created him to be and we will always celebrate that! And that Gramma is from Holland, just like God planned and Momma is a true-blue American and that is why she gets to complain about gas prices (that's another story). So today...the first day of 2013...we made Dutch oliebollen!  (Literally translated as "oil-balls" which sounds like a heart attack bomb,  but thankfully we know them as doughnuts). This is a traditional food made during the new year celebrations in Holland, and one that my mom remembers her mother making which makes it more special.   And when you add apples & raisins to them...they magically become healthy. :)  (Take that oil-balls!)

 

Isaac getting his work space ready

The colander fits!
We are good to go!

Gramma getting her work space ready
(She wouldn't let me take a picture of the colander on her head)

The OLD recipe

He's got his apron & he's checking the directions



Let's stir some stuff!!

Yup...this looks about right, Gramma.

Oil balls...I mean, apple & raisin health food.

A good coating of sugar to make sure we don't taste anything healthy

Oliebollen!!

 

 

The true test...

Hmmm...sugar-covered oil-balls.

Could this be apples that I taste??

Success!

So from our Dutch-American-Chinese home to yours...

Gelukkig Nieuwajaar!

Happy New Year!

Xin Nian Kuai Le!