Progress

I'm sorry. This is boring blog material. But it sure causes excitement at the Sebek home!

Update on Operation Sleep:
Night one Rowan woke up twice- she was allowed to have water in her bottle, but she just fell back to sleep in my arms. It was about a 30minute fest both times. No. Big. Deal.

Night two- Ro woke up at 11 and we did the water bottle. (obviously she's not that hungry--- it's just habit)
... Now for the thrilling news people...
She woke up at 2ish and I didn't go in the room. Cried for about 15 minutes and went back to sleep all by herself!
Again awoke at 4ish, cried for less than 5minutes, and back to sleep BY HERSELF:)

This should not be exciting news for a one year old, but poor Rowan has not been ordinary.

Before the transplant her liver was too sick for her to go without food more than 3hours. Then, after transplant there was that pump with tube feeding that would have to be reloaded every so hours.
After the feeding tube came out, the doctors were all over us about her gaining weight... So anytime she woke up, we were supposed to feed her.

Things were just getting to the point of sleeping all night until the last hospital admission.

Well, she's not skinny anymore, she's got a fabulous liver, and there is definitely no tube in sight, so we are GO for sleeping all night for the first time in her Life!

(now I will admit, I may have been an enabler, but my motherly ways and hawk-like ears made it to where at the slightest noise from her room, I was awake and ready to fix it... But Ro doesn't need that- she's a healthy big girl who wants to sleep all night too)

Not only have we decided to tackle sleep, but the bottle is now finally on phase out.
I have given sippy's a try with her in the past, but I guess I just didn't try hard enough. One whimper and I was ready to give that bottle right back. Well, not this time- mom has put on her big girl panties this weekend too:)

During the day Ro is drinking from the soft top sippy (only because I have now banned bottles). She can have the bottle right before naps and bed only.

Here are some pictures of Rowan redecorating her room:











We're gearing up for our trip to Houston on Tuesday. Appointments all day Wednesday.

Operation Sleep

Being in the hospital, there is one constant:
No sleep!

It's vital signs, physicians, dietitians, labs, medicines, janitors, food trays, construction, and anything else you can think of.

The only comfort from home during all those interruptions... The bottle!
Day and night- the bottle!

Then, if you remember, those spectacular steroids... Up every 2 hours during the night starving.

So now we are home.
Peace and quite- nobody here wanting to get up at night...

But we are. Up about 2 times every night.

That needs to change:)
We all need sleep.

Chance and I think that Ro is still waking up at night hungry due to habit, not the steroids anymore.

So tonight Operation Sleep begins...


Otherwise,
We went to Austin today for labs and our 12month check-up with our "regular" pediatrician.
One stick for the labs, and a great progress report from the pediatrician.
Go Ro! She did great with all the traveling and appointments.

Happy Birthday (round II)

As you most likely know, Rowan was in the hospital for her first birthday.

Today we celebrated her birthday again! And she loved it!
(more low key than our original celebration bash ideas, but extremely special none the less)

Here's a photo montage:


































































It's hard to believe that in just one year we've spent nearly 5 1/2 months in the hospital. We've laughed, cried, prayed, been sad, been happy, been blessed and ultimately have ended up the most beautiful, smart, tough, resilient, sparkling little girl whom we absolutely love to pieces.

Thank you to our angel donor- without her, Rowan would not be here today to celebrate this very special birthday.

Ro's personality has really shone lately and she's a hoot! Keep everything locked up, because she will get into it if she can.

We've been keeping a low profile due to the fact that Rowan has no immune system. But yesterday we busted out to go to target (at a very non- busy time of the day).



So maybe she picked out her own birthday gifts.... Agh- so what:)

Austin Recap

Thursday was shaping up to be a great day. We played in the pool, and overall had a great morning.











This is a picture of her leg from the lovenox injections. Both of her thighs look like this :/











But Back to Thursday- Ro went down for a nap around noon and it felt like eternity before she woke up at 3:30 pm. Even then, she still acted tired. How quickly things can change!
About that time she threw up.
I called Houston because of Ro's immune suppression she may not get a fever or show other kinds of symptoms if she is sick, but while I was on the phone, she threw up again. Their advice was to go to the ER at Dell Children's.

Two more throw ups in the car and we were there.

They immediately put Rowan in a room and began assessing her.

Of course we had just taken out that dang Picc line...
The vascular access team came with an ultrasound machine to start an IV, but they were unsuccessful after two attempts. We ended up going to the OR holding room and an anesthesiologist started a very small one in her foot after two tries as well.

Thank goodness the ER nurses didn't "try their luck" beforehand- Rowan just has terrible veins that have only gotten worse from all of the poking her whole life.

She was admitted on the 4th floor for a urinary tract infection.
It is common for baby girls to get uti's, but Rowan has never had one before. Most likely all of her immune suppressants (steroids, prograf, and rituximab) and a gross diaper just combined for a bad outcome.

Chance was able to stay up with her all night because he was supposed to go to work when all the commotion started.
I stayed at a hotel across the street because I was just mentally and physically exhausted from all of this back and forth for hospital visits.

Friday was somewhat frustrating only because Rowan felt so well already. Chance and I were ready to take her home, but due to her extensive history, the drs were uncomfortable letting us go home so soon.

I begged, I pleaded. But in the end, staying overnight again wasn't that bad. They left a blood pressure machine in our room, so we just took rowan's vital signs when she woke up... Thank you for no interruptions Dell!

She had to have labs drawn twice. But the vascular access team came again and used the ultrasound machine with success this time.

Of course, the rinky dink IV in her foot didn't hold up to rowan's activity level. She was practically walking all over in the crib (with the assistance of the side rails).

So last night she had to receive her antibiotic as an intra-muscular shot :( instead of just through her IV.

Rowan has been so brave- she did well throughout all of the poking and shots.





Today was actually amazing. We have never had an "easy" discharge from the hospital due to one thing or another, but today was just shocking. We were in the car, pulling out of the parking lot at 10:45!!!





And thank you so much to GiGi for cleaning the vomit carseat and playing babysitter. The car actually smelled heavenly when we got in.

Rowan slept the entire way home- just a perfect coincidence with her morning nap!





When we got home:






Food celebration! Although she looks kinda grumpy in this picture... She was so happy- I promise!

2 Corinthians 4:16-18
16 That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. 17 For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! 18 So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.

Thank you to our wonderful family and friends for supporting us. We continue to be blessed and amazed with our precious baby angel Rowan.

Another Admission

Just when we thought everything was great....
And pulled out the PICC line...

Ro was admitted to Dell Children's Hospital for vomiting.

Getting labs and an IV was traumatic, as usual...
But she's doing Ok otherwise.

We are exhausted- going to bed.

Updates later....

And Who is Managing This?!

The day started off early. We loaded the car packed and prepared for the long Houston trip/rituximab treatment.

Rowan was entertained for a while by some new toys and then the car seat got old...
We had to pull over at "my flea" and walk around to get our energy worked out.

That "window shopping" must have worn her out because thankfully she fell asleep soon afterwards.

We arrived in Katy for our visit to the new TCH west campus. Although it wasn't that much closer, it felt like it.

At 11:45 we arrived for labs.

It was confusing.

Finally, at 12:55 labs were drawn.

Good thing we had a cooler packed with blueberries, strawberries, pineapple, and goldfish... There was some serious entertaining going on.

Our now primary hematologist came in and it was a little awkward. He asked a few random questions of us and then received a barrage of questions and statements from us.

He then replied, "And who's managing this?!"
To which Chance and I said in unison, "You are!"

Congratulations:) He had no clue.
Nor had he reviewed any of Rowan's information.

He reviewed Ro's thesis, saw other patients, and finally made it back to our room.
Rowan didn't appreciate the delay. She had other places to be, and required yet even more entertainment. The stroller did well temporarily.






So the word:
No rituximab treatment!!! At first glance while Rowan was tearing up paper and eating strawberries simultaneously, he looked at Ro incredulously and said- she won't need a treatment unless her labs surprise us. Fortunately, her reticulocytes were 5.8! And Hemoglobin was somewhere in the 12's!

Decrease the steroids!!!
We have a long way to go, but this time somebody want to aggressively wean them.... His take is if Rowan is to have a relapse, it will happen when the dose is much lower than right now... So down we go! (Amen to that because I had to call and discuss rowan's increased blood pressure again with her other physician. Her dose had to be increased again due to her pressure continuing to rise. Maybe the decrease in steroids will bring her bp back down too)

And
How do people who aren't nurses take care of these kids?! Our new hematologist tells us vaguely to decrease the dose... The medicine comes in a liquid 15mg/5ml which requires a calculation to get the appropriate amount of medication to Ro. And how would regular people know this? I have no clue. I'm sure they would have been thoroughly confused by his very listless description of the weaning process.

No more PICC line!!!
This again took time to find the correct person to remove the line. By this time (3pm) mom, dad, and Ro were all tired of the cramped room.


Somewhere underneath all the hands, you will find Rowan. This was the Picc removal. She did fabulous!!!

So after the mentally exhausting events, we were able to head back HOME! And the car ride back felt fabulous!




Sorry it's upside down... But she is Picc/diaper arm free!!!




And we don't worship other gods, but is she not praying to the germ X bottle? Poor kid- we're creating an OCD handwasher.

After bath time, and handwashing we took Ro for a quick walk in her favorite car.
The camera is a little shaky since we were all walking, but towards the end you can see her bouncing up and down. It's so fun to see her so happy!

(***insert movie here*** but it's not working, so I will have to post it later)

Afterwards, I peeked in on daddy rocking her to sleep:


Two passed out.

Miscellaneous

Taking a real bath.





Eating delicious cherries.




Reading books before bed.




Cow safari.

Savoring our days outside of the hospital!

Sometimes it gets a little depressing thinking about how many weeks Rowan has been in the hospital this month.... But, it's always cool inside there-
what a way to beat the heat this summer. (there's some sarcasm in there)

Lovenox shots are going really well. I've gotten so good, she doesn't cry anymore. And that's a great thing, since she's still getting poked twice a day!

And Rowan is a whole milk drinker! Yay! Maybe with all the money we save not buying formula, we can pay for her college education :)

Waiting for tuesday's appointment...

Heavenly

After the craziness, our lives got better at 9pm.

Rowan was admitted to our favorite 12th floor as I mentioned.

The rituximab treatment was
started at 3:30am. (last week during the night, we were up every hour or two).

Thank goodness we actually got some sleep this time. And this was really all thanks to our nurse.

We braved the day with the help of our cocktail drugs again.

And as soon as the treatment was over we checked out!

Rowan did superb again during the infusion, and she slept the entire way back home!!!

After it was all said and done, we pulled into the driveway at 1am.

The plan is to meet with another hematologist on tuesday who will become our "primary" hematology dr. After that person reviews all of rowan's labs and current situation, then the determination will be made for another round of treatment or not.

Kinda frustrating we didn't have a solid plan to begin with, but this should put us on the right track and answer a lot of questions we have.

Ro's numbers continue to look better, just not quite where they need to be.

She has had us all walking with her all over the house today. I'm sure soon she won't need our fingers, and then we will be chasing her :O Agh!!!

Hellacious Update

We checked in at TCH.
12th floor- yippy

If anyone wants to stay in a really nice hotel room tonight across from the hospital- let me know ;)

(There may be crumbs left in one of the beds)

Hopefully, we can still get out of here tomorrow!!!


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Hellacious

Is that even a word?

Let's just say it's definitely been an ordeal this Houston journey.

We left Wednesday at 2:30pm...
...And checked in at the hotel in Houston at 8:15pm

Munchkin wasn't really diggin the car ride. It was so much better outside of the car seat- so we stopped 3 times to participate in activities like a park, outdoor shopping area, etc...

Then the unthinkable. 610 closed due to a wreck. Every, yes e-v-e-r-y lane closed making it a huge jam to get off at a teeny tiny, po dunk, outskirts exit.

Of course we got stuck on a bridge when the pile up happened and we were literally trapped! A screaming child, moving about 10 feet per hour---seriously...

So several Oreos, toys, you name it's, and TWO HOURS later, I crossed the grass to get off onto the access road.
Best. Decision. Of. My. Life. so far...My heart was racing, and I'm still expecting my ticket soon;)
But what are SUV's for anyway?

I had contemplated coming with just me and Ro. But SO thankful Devin was able to join me!!!

I had taken pictures of the meltdown, but they were erased accidentally. And it's probably better that way--- They were UGLY.

Instead of packing the pack n play for Ro to sleep in, I thought: "it's too big, it's a pain to lug around, she'll be fine sleeping in the big girl bed with us..."

I should have known better. We do better apart. She woke up every two hours.

This morning we couldn't get ready fast enough. Rowan wanted to get out of the hotel and get moving, so we did.
They called to say no rooms were available early, so we went to the butterfly museum.

No people were there, but I still didn't let her touch anything due to the immune system.
Then, Ro decided she was tired, so she fussed until we got back in the car.

At least we got a few good pictures:























Praise God she decided to nap in the car while we drove around for an hour!

We almost got sideswiped, twice.

When she woke up, we ate lunch. Still no phone call from the hospital...

Afterwards, we tried to shop, but it was way too hot. We were all sweating.

So back in the car for another gas wasting adventure because we couldn't think of anything to do that would be safe for Ro while we waited.

We washed bottles in a bathroom at Starbucks!

When 2pm came around, I called the hospital. They said no openings, and really no discharges in sight.

Are. You. Serious?!

So we checked in to yet another hotel to take a nap and change the explosion that Ro created.
It was horrifically smelly. A sacrificial scarf and towel were used in the clean up.
On the bright side, Ro felt so much better afterwards:)

So, it's after 6pm.... And we're still waiting.
They'll probably call around 1am to tell us there's a room available.

We still have dinner left tonight, so hopefully no more fiascos.


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