Tuesday, August 31, 2010

August 31...

Hi Friends!
We have had an awesome week, Lyla's pre-school open house went fantastic! She loved her teachers, and is excited to start. From a mommy who wanted to be homeschooled for fear of the unknown, this is an enormous blessing. I could praise God all day over just this one thing! On Saturday we got to march in the Millard Days Parade. My brother-in-law Pat is running for Millard School Board, so Lyla got to ride with Papa Bob in his Model T while the rest of us (Evie included!) handed out candy and cheered Pat on. It was so much fun! (pics to come!)
Secondly... we are going to Colorado this weekend. Did I just say we are leaving the city? Oh... YES we are! We haven't gone on vacation since before Evie was born, and we are making the journey to go to a cousin's wedding. I am so incredibly excited to get out of here for a few days, spend time with family, and relax as much as is possible with four adults and three kids (Ly, Eve, and my nephew) in the same condo (: I have located the nearest medical center that takes kids, have made a list of Evie's equipment, and now we just have to figure out how we're going to fit it all in the car (:
and Lastly, I can't believe it's almost September. Like... tomorrow. I am so excited to celebrate Evie's first birthday. This time of year is bringing back an incredibly strong range of emotions. I need to go back and read through my blog from last year at this time just to marvel at God's grace and provision in Evie's life. We saw one of her favorite doctors this morning and she said "Evie's almost one! Who would have thought." What an honor it has been to be Evie's mom, and journey through this with her. Also, how overwhelming that her first birthday is almost here! It makes me want to laugh and cry in the same sentence. So, dear September, my goal is to not cry through your first 19 days, but to enjoy the beauty of God's creation and perfect plan for us.
AND... (drumroll)... Evie is getting close to weaning off of Oxygen! We have taken her off for a few hours at a time the past few days. Freedom is near!!! My initial goal was April, so this is a long awaited blessing (:
Love you friends! We are planning a 1st birthday bash for Evie... I will post details soon!
Lyla's preschool open house with her friend Matthew
Evie taking an oxygen break!

no O2? Let's celebrate!

Tuesday, August 24, 2010

and great!...

Hi Friends (:

We met with Evie's pulmonologist (heart and lung doc) this afternoon. She has had a cold for about 10 days so I was pretty nervous when he warmed up his stethoscope, but he said her lungs sound better than ever! I am thrilled, especially since her lungs have been an ongoing problem since birth. We are going to have an echocardiogram done as soon as possible to see if her heart is working normal or a little overtime, and when she is well we can start weaning her oxygen as much as she tolerates! WOW! I don't really have a "goal" for when she will be off of oxygen since my original goal was April... so we're just going to see how it goes. How free-ing it will be to leave the house without a tank on my back!

Long day, going to try to get to bed early. Love you friends, thanks for checking in!

Monday, August 23, 2010


i'm so tired that's the most creative title i can come up with. oh well!

Evie's appointment with the Orthopaedist (bone doctor)went great this morning. In a nutshell, we aren't going to try to fix anything bone wise until it becomes necessary for Evie's functioning... such as standing, walking, etc. For now, we are going to let her progress naturally, and keep an eye on things. Her bones are progressing well, so we are doing the right thing treatment wise. Horray for that! We will look at straightening out her feet next year.

He also mentioned that he doesn't have much experience with kids who have hypophosphatasia because most of them didn't survive in the past. Go Evie! Her positive progress continues to amaze everyone!!! He said he looks at her case as a new "challenge." It was a very positive experience.

So THANKS for praying, we see the pulmonologist tomorrow, hopefully Evie's cold and lungs will clear up soon but I'm thinking we'll probably have to have a chest x-ray. We'll see.

Love you friends!

Sunday, August 22, 2010

falling into fall...

Hi Friends (:

Although the temps are still roaring in the 90s... I can't believe how quickly our schedule has filled up starting last week. In one sense, it's good. Lyla is ready for pre-school, she's looking for things to do around the house, and she's ready socially to get out and meet new kids, but on the other hand, I just feel so overwhelmed!

Evie has a doctor's appointment tomorrow morning that I am pretty nervous about. It's with a doc we met when she was 2 weeks old, and we just didn't hit it off. I left feeling very misunderstood and a little intimidated. Regardless, he is supposed to be the best of the best, so we are going to see him again to see what he has to say about Evie's bones. If you could pray that it goes well, I would really appreciate it. Also, I have to get Eve up at 6:30 and Ly at 7 so we can be there at 8... and anyone who knows us very well knows that our happy time is not in the early morning! My mom and sister were giving me a hard time recently because I told them if Lyla wakes up before 8am I tell her to go back to bed because it's still Night-time. I think that is pretty reasonable! (:

Everything else nerve-wracking is just new. I remember signing Lyla up for her first organized group activity, feeling the same way. The fact that I didn't like school until I was in about 7th grade doesn't make it much easier to send Lyla to pre-school! Hopefully Lyla inherited a little more of her dad's laid-back personality than my heart-on-my-sleeve personality, but unfortunately she is her mother's daughter. John also starts the RN to BSN program tomorrow. It will take about 3 semesters to complete. He is such a big help with the girls that it's a little hard for me when he has schoolwork to do, but we will be okay.

I know I say this a lot, but if I can pray for you, please let me know. I have a little book with people on different days of the week, and it is my honor to pray for you. Being the recipient of many prayers is a constant reminder to me of how important it is that I pray for you.

Love you friends! I will update soon with the results of our two doc appointments this week, and Lyla's pre-school open house (:

Wednesday, August 18, 2010

half-way done day...

Is this week over YET!

That's not the best way to feel on Wednesday evening! It's not as bad as it sounds... we had to do Evie's overnight urine last night, which is always an adventure. Not a fun discovery adventure... more like a dark frustrating adventure... Long story short, barely any of Evie's urine got in the bag, I checked every 2-3 hours overnight only to find that the pee came out of the collector bag, soaked through the cotton balls, and went in her diaper... that doesn't give it back. So I tried a little more this morning, and after she pooped in the first bag, and pulled the second urine-filled bag off of herself onto my bed... we called it good.

We had to move blood draws to Mon, Wed, Thurs because they couldn't draw enough blood on Monday, but today was a little better. So we go in tomorrow at noon for her last blood draw of the week, and have an EEG at 1. Evie has been doing some rhythmic head nodding and arching of her back, so we are suspecting seizures but are going to do an EEG before adjusting her meds.

And unfortunately we all have colds. I thought the girls were getting over them yesterday, but I woke up this morning with a sore throat. We had to take Evie to see the pediatrician this afternoon, because hers is starting to settle in her chest, so we are going to get more aggressive with breathing treatments.

So I am aiming to get a good nights sleep tonight... tomorrow brings meds, breathing treatment, bloodwork, EEG, breathing treatment, Lyla's first day of gymnastics, and one last breathing treatment. Add to that eating, driving, and washing all of the things Eve peed on last night, and we have a pretty full day!

Love you friends (: Thanks for praying for us and loving us!

Here are some pics from last week

I always ask Lyla "will you hug me forever? even when your 13?" and she says yes... and the other day she got out of the car and said "Mom, will you hug me forever?" it was awesome!

check out that beautiful head! it is healing more and more every day.

her scar is healing beautifully too (:

Psalm 90

14 Satisfy us in the morning with your unfailing love,
that we may sing for joy and be glad all our days.


Sunday, August 15, 2010

trying to stay low key...

Hi Friends!

"Trying to stay low key" is my way of saying... Help! Summer can't be almost over!!!!!!!

We had a good week. We got the results back from Evie's skeletal x-rays that she had Monday. The great part of the report is that she has increased ossification (more hardening) of her bones! The not so great part is that she has "multiple healing fractures." I called with the "how bad? how many? where? why isn't this specified on the report????" list of questions, and found it easier to send John down to find out what that meant. I guess it's how they say that she has possible healing fractures... basically little lines in her bones that may or may not be fractures. Nothing "broken" just possibly "fractured." Not sure what to do with that info, except to remember to be careful, and keep Lyla from smothering her. Easier said than done!

This week we are doing research labs... basically taking a lot of blood and urine. We will have to head to the Med Center Mon, Tues, and Wed... but we don't have much else going on so it's okay... and Lyla thinks having lunch with John is just about the coolest thing ever. Who doesn't like chips and pink milk! When she sees him coming down the hall she does the dramatic "daddyyyyy!!!" scream and runs to him. I'm the only one who knows they saw each other the night before (:

Lyla starts gymnastics this week, and has her preschool open house the following week. I am so excited for her to start some organized activities and have instruction from people besides me, but I'm also kind of nervous! Is this the end of freedom as we know it!? I feel like I've been saying "we're not going to have a schedule until Lyla goes to preschool and we HAVE TO" and now it's here. I'm sure we'll get in the swing of things quickly, it's just an adjustment.

I have some great pics on my camera, but John is working on the big computer so I will post them soon. If you could say a prayer for Evie's blood draws I would appreciate it. Hopefully just one poke, and good results each day.

LOVE YOU friends. Thanks for the consistent encouragement, you are wonderful (:

Monday, August 9, 2010

a beautiful head...

Hi Friends! We're still here!... recovering from Evie's illness, and trying to enjoy the outdoors in spite of the HEAT! I finally uploaded all of my cell phone pictures onto the computer... so here is my best attempt to give you a progression of Evie's beautiful head (:

January 2010... no concerns.
February 2010... beginning of the bulging soft spot
March 2010... soft spot continues to bulge, head starts growing more upward, less round...
still March... (just a cute pic!)
April 2010... you can see how her forehead is growing backward instead of everything growing equally around.
May 2010... bulging soft spot very obvious. Much more concern about pressure in the brain...

July 13, 2010... three days before surgery. I took a picture with her hair wet so you can really see her head...
side view...
July 16, 2010... the morning of surgery
a few hours later! our first post-op photos. you can already tell the difference in her eyes, they brought her forehead forward a full centimeter...
her fresh scar a few days after surgery...
July 23... one week after surgery! you can see the difference in the shape of her head, although it is still very swollen...
July 29th... swelling continues to go down
August 1st, scar is healing, hair is growing, and she's holding her own bottle! you go Eve!

I haven't taken any photos in the past few days, but will do soon (: Just wanted to get caught up when I had a minute! Health wise, Evie had her two post-op appointments last Friday, with the plastic surgeon and neurosurgeon and they both thought she looked fantastic. Today, she had her full set of skeletal x-rays for her 3 month clinical trial check, and I thought they looked amazing compared to previous ones I have seen.
Most importantly, she has been vomit-free for 3 whole days... and has gained all of her weight back! She was over 12lbs before surgery, got down to 11lb5oz last week, and was back up to 12lb 3oz today at the pediatrician! I am blown away by her ability to bounce back, and humbled by the results of prayer in her life.
I talked to Dr. Lutz today about her prognosis... specifically are we out of the "life threatening" range of complications. If you remember, there is a 50% morbity rate for children with infantile hypophosphatasia and seizures by 18 months of age. He said that Enobia (the clinical trial drug company) was very leary of the severity of her condition with her seizures when the trial started last year, but he thinks that with her continual improvement and growth, we are definitely out of the "life threatening" woods! Big PRAISE GOD!
LOVE YOU friends, thanks for praying for, and loving us. You rock!

Wednesday, August 4, 2010


Hi Friends (:

Sorry I haven't been posting much this week... Poor Evie is still dealing with some diarrhea, but mostly vomiting. We had her on Pedialyte for a while, but in an effort to get her blood sugar up we switched her to Gatorade, and have been trying for several days to get her back on formula, but she just can't keep it down.

If you could pray for her, she needs it. She has already lost more than half a pound, and barely ate today.

Thanks friends, Love you and hope to be back with better news soon (:

Sunday, August 1, 2010

What a week!

so I was feeding Evie at the zoo this past week, and we had a surprise visitor:
and we finally saw him!

finish off the day with a swim (:

and this is how Lyla treats Mr. Brian (:
photos by Brian Lehmann www.brianlehmann.com
... and when I went to bed that night I said to John "no one goes to the zoo and the pool in the same day." explaining my exhaustion... he did not feel very sorry for me (: ha ha
STILL working on the before and after post! Evie has had D&V for the past 4 days (docs think because of her antibiotics from surgery), so we have been spending what feels like every minute of the day trying to keep her food down. It is getting better, but prayers are ALWAYS welcome and appreciated! LOVE YOU FRIENDS!