Friday, July 26, 2013

MEET EZRA: GI FOLLOW-UP

Yesterday we made our first trip down to Springfield with Ezra for our followup appointment with the GI specialist who performed the scope on Ezra (back on 06/11/13). She is able to travel from Doernbecher's to a clinic at Riverbend a couple times a month - it made for a MUCH shorter day only having to drive about 45 minutes each way which was much less exhausting than the marathon trips up to Doernbecher's. The visit went pretty well overall. Thankfully Ezra pooped while we were there so she got to see it and thought it looked decent. Since we have been obsessively studying each and every bowel movement Ezra has had since the first sign of blood 10 weeks ago now, it was really important to me that the specialist actually got to see his stool since up until this point it's all been hearsay.

It's been almost two whole weeks since I've gotten to nurse my sweet boy...torture for him, torture for me (I'm telling you, interrogators should use a breast pump to get the answers they are looking for, their subjects would cave in no time!). I'm supposed to be pumping 8 times a day but I'm doing good to get in 6 rounds. It's incredibly time consuming and difficult to fit in the day while caring for a 3 month old and 3 year old. But, there is light at the end of the tunnel, hooray! The doctor says I get to try breastfeeding in about two one more weeks to see how he handles the milk after a month three weeks of gut healing on the pure amino acid formula...music to my ears!!! Then we go from there. Like me, she would really like Ezra to be getting the antibodies from my milk (what I've been thinking/saying all along...it seems so obvious), but he's such a sensitive little guy we still don't know if he'll be able to handle it. She knows that I'm willing to eliminate more from my diet in addition to dairy, so I imagine I'll need to go off soy again and whatever else I need. She's a bit concerned about his vomiting so we may need an upper GI/barium test done, she days the procedure can be done at Riverbend if it continues.

Our pediatrician has already sent a referral up to Seattle Children's Hospital for Ezra. The GI specialist is definitely in favor of us going up there as well, and thinks the hematologist should also refer us to an immunologist. In her words, she thinks there's a bit of a gap in the type of care/attention Doernbecher's is able to offer someone like Ezra, and thinks it's time we go elsewhere. After three months with no diagnosis we couldn't agree more! We are thankful Doernbecher's is around and that we have been able to have the procedures Ezra has needed done within our own state so far...but he really needs more attention than they are able to provide him within their areas of expertise.

In the meantime, we are STILL waiting for the WAS results. We are rechecking blood counts every one to two weeks (Ezra's platelets have seemed to plateau in the 70,000 range for the past month, white blood cell count is still through the roof, and hemoglobin is still very low). We will now be checking Ezra's weight at the doctor's weekly, or every other, to make sure he is gaining enough on the formula (but I am definitely crossing my fingers that we'll be back to breastfeeding as planned in two one weeks...and he's never had trouble gaining weight on that).

Three months has been such a long time to go without a diagnosis but we are starting to realize it might be much longer before we have answers. Thank you for your continued love and support. We definitely continue to need all the prayers we can get...this waiting game is not easy!

And because no update is complete without a picture, look at this cute little side-by-side Josh put together of the boys (both at 3 months, wearing the same onesie - Judah on left, Ezra on right):

Wednesday, July 24, 2013

MEET EZRA: THREE MONTHS OLD


Big brother Judah got the majority of our attention over the weekend for his third birthday, which means I'm a bit behind on Ezra's three month post. So here it is! With so much focus on all his medical issues some of Ezra's other milestones haven't been given as much attention. So let's talk about them. Let's see, first off, Ezra can be quite the little chatterbox at times which is so adorable. We have yet to have a good crack up session, but I imagine it is on the horizon (can't wait!). Ezra still sleeps in our room. By this age Judah was already in the nursery because it was impossible for me to sleep between feedings and daddy said, enough is enough! But with this little guy and all his troubles, sleep or no sleep for mama, I can't bear to have him out of my sight. Ezra seems to be a bit of a late bloomer in his gross motor skills, but has been doing a bit better with tummy time and head control this past week. Our theory is that with all his blood issues, he's quite a bit sleepier than most babies and prefers tummy time for relaxing rather than exercising ;)



I don't know if I've really explained it before, but a big concern with all of Ezra's blood issues is the risk of spontaneous bleeding. It's a very frightening reality to live with on a daily basis, but this past weekend we got brave enough to take our first trip away from home to the coast. It is so scary for us to be too far away from our doctor/hospital, but thankfully for a moment all was well with the world, and he did just fine. We had a great time spending the day together, just the four of us :)

Friday, July 19, 2013

MEET JUDAH: THREE YEARS OLD


How is it possible that our (first) baby boy is THREE!? With everything going on with "baby brother," we were so excited to make this day all about celebrating Judah. This is the first birthday that he is really excited about...he is SO looking forward to having a "birthday party with a cake." We've been talking about it for many weeks now. He's also been talking about building sandcastles at the ocean for months, so that was on the agenda for today...after finding a big present from mama and daddy at home this morning:


These days Judah could spend hours playing with his cars and trucks. He especially loves his Disney Cars cars. He LOVES watching movies (especially Cars, Madagascar, Toy Story, and Despicable Me) and episodes of Mickey Mouse Clubhouse and Thomas the Train. We held off on screentime for as long as we could, and now that we've started, it's a hard thing to keep in check! Thankfully during the summer there are much more exciting things to do outside which makes it a little easier. He has thoroughly enjoyed our trips to the pool and fountains and we hope once things settle down with Ezra we will have more opportunities for water fun again :)

While this is a challenging time with lots of an emotional outbursts and fits, it's equally as wonderful as Judah is constantly lifting our spirits with the precious and often hilarious things he says. We need to start writing them all down again to add to our list of Judah-isms (stay tuned) :)

Here's a fun Pinterest-inspired list of questions we hope to ask for many birthdays to come:

1. What is your favorite color? red
2. What is your favorite toy? cars & trucks
3. What is your favorite fruit? apple
4. What is your favorite tv show? Mickey Mouse Clubhouse & Thomas
5. What is your favorite thing to eat for lunch? peanut butter &  jelly
6. What is your favorite outfit? Thomas shirt or Lightning McQueen shirt
7. What is your favorite game? get-you, get-you (with daddy)
8. What is your favorite snack? bunny cookies
9. What is your favorite animal? a hippo at the zoo
10. What is your favorite song? The Fruit of the Spirit (song from church)
11. What is your favorite book? Chicka Chicka Boom Boom
12. Who is your best friend? Mama, Daddy, baby brother, and Ashley
13. What is your favorite cereal? "Crunchies" (Trader Joes Brown Sugar Shredded Wheat)
14. What is your favorite thing to do outside? go to the park
15. What is your favorite drink? milk & water
16. What is your favorite holiday? Easter (Easter egg hunts made quite the impression this year!)
17. What do you like to take to bed with you at night? blankie & friends (his stuffed animals)
18. What is your favorite thing to eat for breakfast? mini pancakes
19. What do you want for dinner on your birthday? pizza
20. What do you want to be when you grow up? like mama & daddy

We love you so very much bubba...our hearts overflow with the joy and love you bring us. Happy 3rd birthday! 

 

Monday, July 15, 2013

MEET EZRA: ROUGH WEEK


It's been a while since I've written an update. We're exhausted. This past week was another crazy week...it involved a trip to the ER Wednesday where we spent most of the night, 2 rounds of ultrasounds, one on Thursday, one on Saturday, a doctor's visit, another trip back to the hospital for unplanned blood work, and many sleepless nights. The craziness with our sweet boy seems to come in waves (which are exactly the words I uttered to our pediatrician during about the 100th conversation we had with him last week). Long story short, Ezra puked a lot throughout the week, he came down with croup and was having labored breathing (or so we thought, chest ultrasounds were clear), the blood in his stool has continued for about 8 weeks straight despite my diet changes, there was some blood in his urine (that thankfully seems to have cleared up), and his spleen may be enlarged again. Kind of a million different things but likely all related (minus the croup, I guess).

There are some other things going on as far as Ezra's diet is concerned that are too hard for me to talk about right now...but what the heck, maybe writing about it will help. It involves me pumping in every spare moment I have and $50/can prescription formula. With a healthy child there might have been more we could have done to avoid this horribly drastic route, but given all of Ezra's blood issues, we cannot afford to let his gut continue to bleed. We have to see if we can heal his gut with this purely amino acid based formula (and to see what kind of effect, if any, it has on his cell counts) since my elimination diet appears to have had no effect. The hope is that I can pump in the meantime and reintroduce breast milk again when he is healthy, but that all depends on me being able to keep up my supply by pumping and him being able to switch back when the time comes. I can't even begin to describe how agonizing these doctor's orders (from the GI specialist) have been for us and how many tears I've cried. I think breastfeeding is the most wonderful, amazing, perfect food for a baby...the most wonderful, amazing, perfect way to bond with your baby...so to have this stripped away from both of us breaks my heart. I can't really even put it into words. But, at the end of the day, the formula should definitively tell us whether or not Ezra's GI bleed is allergy related, or apart of a larger problem pertaining to his other medical issues.


Anyway, with everything he's been through, Ezra continues to be such a sweet, sweet easygoing baby. He is such a blessing to our family and we love him so much! We now await the latest abdomen ultrasound results and we continue to wait for the WAS test results - depending on those results we'll have to start thinking about our next step in finding someone who can diagnose and treat him. Judah turns THREE on Friday so we are hoping and praying that this week is MUCH less eventful and that everyone is healthy for party time :)

Thank you for your continued love and support. Please keep praying for help and answers for our sweet boy!

PS - I'm still working on thank-yous :)

PPS - If breastfeeding didn't work out for you, I'm not judging...if anything, I now know how to empathize with you.



Monday, July 1, 2013

MEET EZRA: WAITING GAME


We just went an ENTIRE week without going to Doernbecher's! *Giant sigh of relief* I was battling a nasty cold all week, and it was a huge blessing that we didn't have to make that physically and emotionally draining trip up to Portland (it's really hard to remember the last time we went a whole week without having to make at least one trip up there). Our pre-authorization went through more quickly than expected and we were able to have blood drawn for the latest round of genetic testing (for Wiskott-Aldrich syndrome (WAS), see previous post) at our weekly CBC appointment. Ezra just had to endure one poke as they took their time and were able to get a good stick on the first try. So now, we wait. Results will take 4-6 weeks.

As far as the CBC goes, Ezra's white blood cell count was through the roof (40), hemoglobin only dropped from 9.9 to 9, and platelets were at 71 (up from 49 the week before). The hemoglobin and platelet count were a bit of a surprise as Ezra had woken up with increased blood in his stool that morning...I was certain we would be heading to the hospital for a transfusion later that day because typically the increased blood means his numbers are down...but THANKFULLY that was not the case. Still no where near where need to be, and still no explanation for the crazy high white blood cell count, but overall, some numbers we can live with...until the next CBC later this week that is.


As long as Ezra's numbers stay in a (relatively) safe range and he doesn't have any increased bleeding or bruising, we might actually have more of a break for the next couple weeks until we see the GI specialist again. I've been on the strict no-dairy diet for over 3 weeks now and I can't say that I've seen a huge improvement overall...it will be interesting to see what the next step will be if the specialist isn't pleased with the improvement either.

In the meantime, there's really nothing the doctors can do for us. It's pretty clear they are all stumped. It seems like WAS testing is a last-ditch effort for them to try to diagnose Ezra. If the tests come back negative, I think we'll have to start looking for somewhere else to help us...wherever that may be.


It's super frustrating just sitting here waiting for the results. We wish we could already be on to the next hospital or doctor who could help our sweet boy...but after all the running around during Ezra's first 10 weeks of life, I suppose having a little bit of downtime will be good for all of us.

We can't say enough how much we appreciate your continued love and support. We have such a backlog of thank-yous to write...please don't think we haven't GREATLY appreciated your generosity, we're just now coming up for some air and will try to catch up soon!! Please keep praying for a miracle for sweet little Ezra and patience for us as we wait for answers.