Here we go again!...

Hi Friends (:
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Thanks for your prayers! Evie seems to be doing well. We have a really big week this week...
Monday Evie has an x-ray to see if her lungs have cleared up at all, if they haven't they mentioned putting her on a C-Pap machine (i think that's what it's called), kind of like her oxygen cannula that she has now that goes up her nose... except it has bigger tubes that seal off her nostrils and push air in to help expand her lungs. Yikes... hoping to avoid that!
Wednesday we meet with Dr. Sammut, Evie's pulmonologist to talk about her x-ray and see what direction we need to go...

Thursday we see Dr. Puccioni. I can't tell you how nervous I am about this appointment. Mostly because we have been waiting 3 and a half weeks to see him, and it's finally here.
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BIG PRAYER REQUEST: Dr. Puccioni wants a 3D cat scan of Evie's skull. She may have to be intubated (on the ventilator) to do this... so her lungs would have to be in great shape. Will you pray that her lungs are crystal clear on x-ray tomorrow so we can get the cat scan done? We have already waited 3 weeks to see this doctor, it would be such a bummer if we didn't have the scan he needed when we went to the appointment. We have the MRI, and a normal CT scan, but it looks like the 3D scan is the one with the most info.
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Thanks for praying for us, we had an awesome weekend... Lyla was a flower girl in a good friend's wedding, it was an absolute blast! John and I had so much fun getting out with the girls (: Wedding photos to come!
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Photos from last week:

Is there a mom who can't relate to this photo!?

Discussing Evie's cold with Dr. Pat

onward with breathing treatments... yes, Evie puffs smoke out the dragons nostils (:finishing out the day with Ly
ahhhhhhhh naptime..... i love you...
photos by Brian Lehmann

www.brianlehmann.com

keep 'em coming!

Hi Friends,

Thanks for praying for Evie, keep those prayers coming! The good news is, we haven't been hospitalized again yet. PRAISE the LORD! The not so great news... the chest x-ray of her lungs from yesterday looks WORSE than when she left the hospital after having RSV. Not good at all. So we are keeping her on breathing treatments and antibiotic, and are going to add a cough-assist device to try to shake out some of that gunk. Her pulmonologist said if we don't get it out she is going to get a nasty pneumonia. Unfortunately she has little patches of collapsed lung in all 4 lobes, which is a bummer.

She actually looks a whole lot better than she did last weekend, on Sunday she could barely smile at us, and today she seems happy as a clam as long as we keep on top of her breathing treatments and keep her nose all clear.

So keep praying for clear lungs, I thought there would be an 85% chance we would be in the hospital yesterday, so hopefully we can kick this one at home with a cough assist and God's help.

Love and blessings!,
Lindsey

sick... :(

Hi Friends,

Could you say a quick prayer for Evie? Lyla brought home a mild cold last weekend, and unfortunately everything ends up being serious for Eve. We are giving her breathing treatments every 4 hours and an antibiotic to hopefully kick it sooner than later. She has a terrible cough and isn't sleeping well.

Thanks friends, we are so blessed by the many people who are lifting Evie up in prayer every day! Love you!!!

CRCC pool party!

Hi Friends!
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We had a great opportunity last Thursday to go to the Children's Respite Care Center Pool Party! We were invited by some friends who have gone to a few events, and we had a blast. It was fun to get to know some other families and just enjoy swimming (:
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Evie and Judah discussing their swimming plans at dinner...

mom & Evie easing our way in, she loved the water!

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Hanging out with good friends in the shallow end

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Lyla and daddy!

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rest break and snuggle time for Eve and mom...

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warming up after a fun swim!

MRI results.... well not really!

Hi Friends (:

Well we made an appointment with a neurosurgeon for April 29th at the beginning of this past week... but I was secretly hoping we could get it moved earlier so I had yet to blog it and make it official... but it's official. We will be seeing Dr. Puccioni, who is supposed to be a rockin neurosurgeon, so we are happy about that. John has actually heard of him around the OR at UNMC, so that is probably a good sign.

The results of Evie's MRI are kind of up in the air. On the CT that she had in the hospital in February it looked as if her sutures were wide open. On the MRI last week it looked like they were completely closed! Unfortunately with hypophosphatasia, Evie's bones are so demineralized it's hard to tell the difference between what is bone and what is cartilage. There is another fancy CT scan that makes a 3 dimensional view of the skull... and that may be our next step. I am going to try to push and have that done before our neurosurgery appointment... so I can take the original CT, the MRI, and the new 3D CT, and hopefully by putting the three of them together we can have a better idea of what we're looking at.

I am also trying to find some other parents whose kids have had craniosynostosis surgery to see how the experience was for them. If you or anyone you know has done the surgery, I would love to chat with you. I would love to find someone who has had hypophosphatasia AND the craniosynostosis, but with the disease being so rare, it's been a challenge!!!

On a lighter more wonderful note, we had an awesome Sunday, with a great message at church this morning, and fun afternoon at Bible Study. I hope I never take for granted the blessing of being part of God's family, and being loved by His people. I am so thankful for the trials of this past year and my deepened appreciation for the love of God.

We have an easy week, just PT on Wednesday and a pulmonology appointment Thursday morning, so I am planning on spending a lot of time outside in this beautiful weather!

Love you friends! Will update soon (:

Never saw blue like that...

Hi Friends (:

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I hope you had a blessed Easter weekend with many reminders of God's love for you! We had a great one, a double shower for my sisters on Saturday night (we have a baby and a wedding coming up!), and a full day at Papa and Nana's on Sunday. I went out this past Friday with some girls, and when I was catching up with an old friend I was trying to put our past 6 months into words. Life with Evie is so much more vivid than life was without her. It reminded me of a song that my cousin had at her wedding, I will paste the words below and put it on my song list.

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I never saw blue like that before

Across the sky,

around the world

You're giving me all you have and more

No one else has ever shown me how

To see the world the way I see it now,

I never saw blue like that before
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Thank you Evie Jayne for opening my eyes to a world full of beautiful things.
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Love you friends! We're working on setting up an appointment with the neurosurgeon, I will let you know when that happens (:

MRI...

Hi Friends (:

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Sorry it has taken me so long to post this, the MRI went great! It was so so so hard for me to say goodbye to Evie when they took her into the MRI room, but it felt good to cry it out for a few minutes and remember what a blessing it is that I get to hold her close every day. They went ahead and intubated, and she was extubated right away with no problems. It is SUCH a relief that we didn't have to stay in the PICU overnight, I was thinking that was highly probable. She has been doing good since we have been home, still very congested, but her happy little self.

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We are still waiting on official results. We have some preliminary results, but we won't really know how to interpret them until we hear from the Neurologist or Neurosurgeon. It seems that one of Evie's fontenelles (soft spots) has prematurely fused, and we may be looking at Craniostenosis. Not a great diagnosis, but not necessarily terrible. She doesn't have any masses, or hydrocephalus (build-up of fluid) which is great.

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When I hear official word from the docs I will let you know!!! Thanks for praying, I felt God's hand of protection over me when a friend from the PICU took the time to come down where I was waiting and make the time go quicker. It was not only great to see her, but knowing she took time away from her family to see me was humbling and wonderful.

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Love you friends!