MRI Thursday

Hi Friends!

Quick Update... we are gearing up for Evie's MRI on Thursday. As of now she is still pretty congested, but she has been on an antibiotic since last Friday so we are praying that whatever she has will clear up and move out!

Prayer requests:
- Evie's congestion will clear up and she will be in tip top shape
- God will guide the doctors when they are deciding whether or not to intubate her
- That she won't have any problems during or after the MRI
- That I will make the right decisions, and have peace knowing she is the hands of our Almighty God. I am already nervous, it's been a while since we had a big test.

Thanks friends! Love you!

one of many...

Hi Friends (:
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I have been thinking about this post for a while, it seems to be relevant almost daily lately. This blog has been an important communication tool for me to meet other moms. Moms who are in the middle of a pregnancy with an unknown outcome... moms who have kids who are differently-abled... moms whose hearts ache as they watch their kids work so hard for the things that come naturally to 95% of everyone else... moms who cheer when their kid hits 10 pounds by 6 months (: ... moms who are up after midnight, sitting at the computer, reading other people's experiences, joys, and fears, and occasionally posting their own. I have learned so quickly that I am one of many.

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I recently reconnected with a girl that I went to high school with, as she is facing a difficult pregnancy. She is in a nearly identical situation as I was... halfway through her pregnancy with very few clear answers to her questions, and a heart full of fear. The unknown is scary. I know they can do it, there is no doubt in my mind. I didn't think I could do it, and I can't express in words how glad I am that I did. I am so thankful that Ashley and I have each other to talk to about our experiences and to lean on each other for support.

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I also connected with a mother on facebook, whose daughter is the first child to start the clinical trial that Evie is on (keep in mind there are only around 10 total)... how AMAZING is that! I have so many questions for her, I hope she doesn't regret "friending" me! There are pictures of her daughter Amy on facebook, who has infantile hypophosphatasia like Evie. She is absolutely beautiful, smiling, sitting up, holding her own head, and get this... standing... and taking STEPS. I could cry all night thinking about Evie walking. Even though it may not happen, the possibility of it is just flat out wonderful. Thank you for giving me hope sweet Amy. And thank you Amy's mom, for offering to call me (FROM IRELAND!) so we can chat. I hope I can show the same loving gesture to others (:
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It is very clear that God gave us Evie to show me love with no limits, to adjust my perspective, and to understand His love for us. This is what life is all about. Pure, unselfish, life giving love. A kind of love I had never felt, and JOY with each milestone. Thank you for sharing this journey with me, and for praying for our family as we continue on. It is an honor to share with you, and to pray with and for you. And a special thanks to the other moms who share their stories, and have opened their hearts to me. Writing it out isn't always easy, but doing life together has blessed me immeasurably.

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Love you!!! (:

Evie and I blogging... She thinks I'm very interesting!

Zoo Pictures

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postponed...

Hi Friends (:

It's late... and I'm tired... so I'm going to make this quick!

Evie's MRI has been postponed until April 1st. She got MORE congested these past few days, to the point where I am uncomfortable with her being intubated or using the laryngeal mask (LMA) and the anesthesiologists would feel more comfortable intubating... while the pulmonologist only want to use the LMA! Long story short, we are going to wait until Evie is stronger, and there is a SAFE, unquestionably best way to get her MRI done.

Thanks for praying, this certainly feels like an answer to prayer with how uneasy I was feeling about it in the first place. Not exactly the answer I was expecting, but definitely the right answer. Funny how that always happens! Thank you God!

Love you friends, I took the girls on a quick trip to the zoo today to get out in this sunny weather, so I will post some pics soon.

medium Friday, big Friday...

Hi Friends!

Sorry it's been almost a week, I am getting lazy!!!

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We had a good end to last week, Evie had a pulmonology appointment on Thursday and she is back to her weight of 10.2 pounds! I knew she would be back up there, but it was great to get the affirmation that she is "officially" gaining weight. I don't even want to know what a normal 6 month old kid weighs... I am just going to be thankful for weight gain (:

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We have two important Fridays this month... last Friday (medium Friday) Evie had a repeat EEG to double check her brain-activity since we put her back on B6 and she again didn't have any seizures! There is always that thought in the back of my mind that something might be wrong, but that wasn't the case (:

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Big Friday is this Friday, Evie is finally having an MRI. Her neurologist has wanted to do it since January, but she has either been sick or hospitalized since that recommendation. We are finally doing it because her soft spot is bulging more than ever, and with the recurrence of seizures it is important. She has a little nasal congestion, but her pulmonologist recommended a laryngeal mask, which (from what I understand) means she will be intubated with a less-invasive tube that has a cuff to keep it in place. I think this will eliminate the risk that she will stop breathing like she did in January during her upper GI, but nonetheless leaves me pretty nervous. We haven't had great luck with tests and sedation, but it is so necessary.

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The second reason that the MRI is a big deal is that doctors seem to have conflicting views over whether or not seizures cause brain damage. Evie never stopped breathing for more than a few seconds, which is good, but at some points she was having up to 6 seizures an hour.

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We have an appointment with anesthesia tomorrow to discuss how things will go on big Friday. Please pray that John and I will make good decisions (if there are any to be made) and that God will give us understanding and peace about the MRI.

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I have a few more prayer requests:

1. That Evie's congestion will clear up and she won't end up with a cold/sinus infection

2. That she won't have any breathing problems during the MRI

2. That she won't have any trouble coming off the ventilator after the MRI

3. That the anesthesiologist and team will let me go with Evie into her MRI

4. That the MRI will give the neurologist a clear picture of her brain and any problem areas that may be there

5. That there are solutions to any problems that are seen.

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LOVE YOU FRIENDS! Thanks for checking in and loving us.

in the waiting room... I actually just wanted to show off how good Lyla is at the hospital, she is amazing!

ready for weight check!


the girls


for those of you who were wondering what Evie's "car bed" looked like



photos by Brian Lehmann

celebration pics (:

Hi Friends,

Yesterday was my birthday (I'm still closer to 25 than 30!), and this Saturday is our 5 year anniversary... that went fast! We had two years of honeymooning before Lyla was born, and two and a half more years before Evie. I can't believe how much has happened in the past 5 years.

There is nothing eventful to report about Evie! Horray! She is doing really well, keep praying that we can all stay healthy through the end of winter. That would be an enormous blessing (:

Here are some birthday pics:

Lyla was very helpful with cake decorating...

our cake looked like a pinata...

that's a lot of candles!

Nana getting a little Evie time

Happy Birthday Mom!
photos by Brian Lehmann

another good week. (:

Hi Friends (:

Evie had a great week... she has gained back all of the weight she lost from having RSV and is a whopping 9lb 14oz! I was so afraid she was going to get set back even farther after being hospitalized for so long, but after being back on her seizure med she is eating better than ever.

Home injections are going really well, it is really nice not to have to load up my people to go to the hospital three times a week. Hauling both girls and all of their garb was the worst part, it's nice to have some extra time (:

Evie had a "developmental scale" test done for her research protocol this week, and it was great to hear that some of the other kids on the trial are starting to stand and take steps! I am glad we got Evie started so young, and in time we can start to work on the same things. Obviously we will be behind on an "average" scale but I am so proud of all she has overcome already.

Love you friends!!!

Here are some more wonderful pictures that our friend Brian took this week (: Enjoy!

Lyla at UNMC

Evie chilling out before physical therapy

physical therapy... it's harder than it looks!
Lyla has to have her own therapy area (:just being cute...

getting ready for her check up...
we love Dr. Pat!

had to stop at White House Black Market to see a friend... and so Lyla could try on the latest heels and jewels (:

photos by Brian Lehmann

change is...

good? hard? fun? exhausting? nerve-wracking? Even when it's all GOOD change! Like being HOME!

Hi Friends (:

The first few days of this week have been all of those things! I was going to blog yesterday, but it seemed like someone was crying all day! If it wasn't Lyla then it was Evie... and when I finally got a chance to sit down I chimed in a little (: It's good for the soul right!?

Regardless, we are doing really well. I finally got our clothes put away and most of the living room cleaned up, so I am feeling a little less overwhelmed (: And the kids were great today, which helps.

BIG CHANGE OF THE WEEK... Evie can now get her injection at home! No more going to the hospital 3 times a week... but I'll be honest, I am going to miss the nurses and staff that took care of Evie, it was fun to connect with them. We will have to stop up and see them (: We did our first injection last night... it was very uneventful, Praise God!

Today Evie had her first physical therapy and occupational therapy visit from the school district! It was really great, they were very proud of her and gave me some great ways to move her around to encourage her to strengthen her muscles. When we were in the hospital the "team" came and went over her plan with me... she is currently functioning about 4 months behind in her 'gross motor' skills (moving big body parts), and at the low range of normal with her fine motor (fingers, toes, etc.). I can't say I was surprised with where she's at... after all she doesn't have enough bone strength to even support those muscles yet, but I figured she would be in the 5, maybe 10% of functioning with her movement and she was in the 1%... Disappointing, but gives me more good reasons to work on her strength. And she's so darn happy she doesn't even mind her "therapy."

Did I mention today that I love my kids? I can't believe how much I love them sometimes.

Okay here are some of our latest pics:

pancakes for dinner our first night home

a little break before bath time... one kid bathed...
one to go (:

Ly needed a little trim
goodnight sweet Lyla (:

(photos by Brian Lehmann)

Love you friends!!! Thanks for keeping up with us (: We have a few doctor appointments this week, I will update with Evie's progress! I think she is gaining her weight right back so Praise God for that. His protection over us constantly amazes me. This isn't a new verse to my blog, but worth re-posting! Thank you for praying confidently for us friends, I will pray confidently for you also (:

Hebrews 4:16
Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.