Wednesday, November 20, 2013

MEET EZRA: SEVEN MONTHS OLD


Ezra is SO laid back (he gets that from his daddy, of course :). You just would never know he's been through all he's been through. He often has a very serious expression, especially when we're at the doctor's office (go figure!), but he is the sweetest, most smiley, silliest baby with us...and lately likes to stick out his tongue like he's doing here.

I like to look back at Judah's monthly updates when I'm writing Ezra's, just to see how he's doing in spite of his disrupted start at life. I was so happy to see how well he's doing developmentally in comparison to how Judah was doing back when he was seven months.

Judah at 7 Months (in gray) and Ezra at 7 months (in black):

1) Judah is now eating solids (all homemade): rice, oatmeal, acorn squash, sweet potatoes (yams), carrots, and green beans (soon on the menu: butternut squash, sweet peas, and avocado).

1) We're still on rice with Ezra. Not homemade. We need to get all the extra iron in this little guy that we can, so fortified it is! Looking forward to trying more foods, but it will be at a much slower pace to make sure there aren't any new allergies.

2) Sits up like a pro!

2) Ezra still falls over sometimes (often with the help of his big brother), but he can sit for long stretches on his own which is awesome!

3) Loves standing with help, but can stand on his own little bits at a time (cannot pull up to stand on his own, though).

3) Ezra has loved to stand for a long time now. Still not completely on his own, obviously, but this kid has always preferred to stretch his legs out (in the womb he constantly had his feet in my ribs - and I'm convinced he was also kicking off of them during my final contractions when it was time to push to help me out...I'm not even kidding).

4) Not really expressing much interest in crawling (I think that's because he knows we will carry him everywhere he wants to go).

4) Ezra isn't rolling over from back to tummy yet (just from tummy to back). He only rolls from his back to his side. But when he is in a sitting position, he leans over onto his hands and pushes up on his legs like he wants to take off.

5) Always loves to pull off his socks and chew on them or his toes (I think he gets this from his mama, haha).

5) No difference with Ezra. Which is why I usually keep him in footed pajamas so his tootsies can stay nice and warm.

6) Has put mama's cloth diapering confidence to the test with the new solid food poo texture (ew!).

6) Cloth diapers, what? Let's just say, the first time around, the environment was very high on my priority list...this time around, survival has been at the top of that list. Toxic chemo poo made cloth diapering a complete no-no, and post-chemo, Ezra has incredibly sensitive skin and it just hasn't worked for us. All that is to say, I think cloth-diapering is awesome and I still consider myself a cloth-diapering pro/advocate. And maybe it will work with Ezra down the road. But for now, survival trumps being earth-friendly. We'll let the parents with healthy kids take on saving the environment for now :)

7) Now has an earlier bedtime (around 8) and takes naps (IN HIS CRIB....HOORAY!).

7) Up until about two weeks ago, Ezra went to bed when we went to bed and slept by my side either in the co-sleeper or the rock-n-play. I couldn't bear to have him out of my sight or out of reach. But now that his numbers are up, and the vomiting has subsided, and we have *shhhhhhh* taken him off the supplemental feeding tube (partially because he was waking up every.single.hour for nearly 2 months straight), he is going to bed just after Judah, IN THE NURSERY (with a video monitor)! We're like whole new people now that we all aren't awake every hour of the night. He's sometimes able to sleep 4 hour stretches now! I think the increase in sleep is going to work wonders for his growth (and for our sanity). He doesn't nap in his room yet. Usually it's in my arms if I can swing it (I can sometimes get him to nap when Judah naps. There were so many times in the earlier days when I was robbed of the joy of holding my sleeping baby as we were going to and from doctors, so now I'm clinging on to these moments every chance I get!).
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8) Is SUCH a good boy...we love him SO much!

8) Ditto. Ezra is pure joy. We have been blessed beyond measure with both our boys and we love them so very much.

Sunday, November 17, 2013

MEET EZRA: FEAST OR FAMINE

This kid has to be gaining some weight, right!?

If there was ever a good time in history to have a child with incredibly complex medical issues, now is that time. Thanks to Facebook, I have not only "met" amazing people like Kasey (who I first wrote about in this post), but I have more recently come to know some other mamas of little ones who are pretty much going through the SAME exact things we are facing with Ezra. One of those people is mama to a little guy who is just a couple months older than Ezra. He has JMML, he has Noonan Syndrome, and a number of other health challenges that parallel Ezra's. The other day she wrote about it being "feast or famine" with her little guy. The same goes for Ezra. And I am happy to report that the last couple weeks have been a time of feasting for Ezra...both figuratively and literally!

For starters, Ezra has been off his chemo meds for 2.5 weeks now...and when we got his labs done this week, his numbers were great! They're not totally normal, but for him, they're great. Such a relief. Ezra's counts have been known to fluctuate drastically from week to week, but we are cautiously optimistic that the worst of the JMML is behind us. Please pray that it is!

In addition to that, Ezra hasn't puked for well over a week. Words cannot express how thankful I am that he has had a break from the horrible vomiting he suffered for so many months. It could rear it's ugly head again at any time, but I am so thankful we've all had a break from it.

As for the literal feasting, Ezra is able to nurse longer (and take in more volume) than he has since he was a newborn. Now that he is off chemo and his spleen is back to a normal size there is more room for his stomach again, hooray! He also got to try his first solids this week. Since he has such a long history of an overactive gag reflex and frequent vomiting, we were very nervous that he was going to have a hard time even getting a spoon in his mouth, but he did so, so good. And because of his severe dairy allergy, we were also scared about new potential food allergies...but initially, he had no reactions to the rice cereal. Unfortunately a few days later he had some blood in his stool...but even as careful as I am, we think it's possible some dairy snuck into something I ate, and hopefully he's not allergic to the rice...that would not be good at all. Yikes. Please pray that he's not allergic to rice.

Ezra's first solids!

And because we love a good brotherly comparison, this was Judah's reaction to his first solids...

You might be wondering how Ezra's feeding tube plays into all of this. Let's just say that we don't want to get into trouble with any of our doctors or nurses, so we don't really want to talk about it right now (but feel free to ask us privately if you're interested) :)

Overall, such good news to report! We are hopeful that our times of "famine" are more a thing of the past...or at least that our times of feasting come along more frequently, and stay around for much longer! Thank you so much for the continued prayers. We feel like so many of them are being answered.

Tuesday, November 5, 2013

MEET EZRA: "NORMAL"


Normal is such a loaded word. Things have been FAR from "normal" around these parts for the past 6.5 months, but we catch glimpses of it every once in awhile. Like last week when we got to dress up the kids for Halloween. We didn't get to do some of our usual stuff, like trick-or-treating with our friends and hundreds of other kids downtown (that would have been WAYYYY too much exposure for Ezra), but we did make it to a few houses in the neighborhood that evening. A couple months ago, we weren't quite sure what the holidays would look like for us this year...but they're starting to look a LOT better than a little baby hanging on for dear life after undergoing aggressive chemo and a bone marrow transplant, spending many months in a hospital room, and many more months away from home (and from each other) near the hospital in case of relapse...and words cannot express how much easier we can breathe knowing that we shouldn't be experiencing such circumstances any time soon!

The exciting news from last week is that Ezra got to go off his chemo meds, praise God! The oncologist was really happy with how well Ezra's counts and spleen have been responding to the chemo over the last couple months...so now we get to go off of it and see how things go. If his counts continue to look good, we should get an ENTIRE month without oncology appointments! (We'll be able to get bloodwork done at the lab down here in the meantime). Because the chemo was so effective, Ezra's white blood cell counts have gone from incredibly high down to the lower end of the scale, so the oncologist wants us to remain vigilant over the next few months as Ezra will be more susceptible to infection (especially since he won't be able to get a flu shot or other vaccinations until the chemo is completely out of his system and his counts have normalized). So, our life can't quite resume to normal yet...but we're getting closer.

In other news from last week, the doctors did ease up on their concern over Ezra's weight now that he has his Noonan Syndrome diagnosis and we can measure him on NS specific growth charts. It was so good to finally have them able to see Ezra's "dot" comfortably in the middle of the percentiles instead of trailing down, out of range (on a normal chart). We still have a LOT of improving to do in the growth department, but now that bone marrow transplant is postponed indefinitely, we should be able to work at a slower pace. To get a better idea of how tiny Ezra is, here is a side-by-side of Judah and Ezra in the Beaver costume I put together for Halloween when Judah was a baby...Judah is 3 months old in his photo and Ezra is 6 months. Of course it's not a perfectly fair comparison since Judah has always been in the 90th percentile or higher for height, but, you get the idea.


So pretty good news all around! Ezra is still on a lot of medication (mainly for his GI issues), we still have many appointments on the horizon, and many obstacles to face (and conquer!), but things are looking much better than they have at many times during this journey. We are continually humbled and thankful for the outpouring of love and generosity we have received (like the Papa's Pizza fundraiser yesterday). I say it on Facebook all the time, but in case you only follow along via the blog or CaringBridge, we SO appreciate your support...it has helped and continues to help us with co-pays, prescriptions, gas, meals, etc...and allows us to take our attention away from finances to focus on caring for Ezra and his ongoing medical issues...it is a tremendous blessing. Thank you for continuing to pray for Ezra and our family. We have such a long road ahead of us, but each day we start to gain a better grasp on our new normal, and we are so hopeful that things will continue to improve for little E.