thankful...

Hi Friends!

Well I have had this post floating around in my head since before Thanksgiving, and it's been a struggle to get down in words... I am so thankful for so many things, it's hard to write down what I'm thankful for, and feel like I've done it justice. So I'm just going to give it a go.

I am thankful for God's faithfulness. His love. His perseverance in my life. His constant presence. A plan, that I'm finally content not knowing... amazement at how the past few years have turned out infinitely better than I could have known. Love so deep and wide it pours out into everything beautiful He has made.

I am thankful for a husband who likes to hold my hand. All the time. Seriously, like always. Who takes care of the big stuff, and reminds me not to worry about the little things. Who loves me unconditionally, no strings attached. Who is super fun, and super funny. And makes me feel like the only girl in the world.

I am thankful for my Lyla, who in good ways and bad, is strikingly similar to her mother. She cries hard, and laughs harder. She says the funniest things at the funniest times. She has been the perfect partner in crime to walk through the past 3 and a half years with. She has taught me how to love being a mom because she's just so easy to love.

I am thankful for my Eve, who has shown me joy and perseverance. Who has her dad's laid-back, fun loving, darling personality. She lights up a room with her sparkly blue eyes, who have seen more healing in a year than some experience in a lifetime.

and lastly, I am thankful for the community of family, old friends, new friends, internet friends, strangers, moms, dads, sisters, bible study gals, health professionals, neighbors, and everyone else I get to do life with every day. I can't express the encouragement you give me and strength to keep on keeping on (:
We are blessed beyond words.

I am thankful for YOU! Love you friends (:

where have we been!?

Hi Friends!

Rarely do I let 10 days go by without updates! I feel like I haven't sat down in the past week and a half (: So let's start with the good stuff. Evie had physical therapy on Wednesday and it went fabulous again! We had two Occupational Therapists, Evie's case manager, and her Physical Therapist. There was talk about getting her back to the orthopedic surgeon earlier than February to look into a procedure where they would "clip" the tendons on the back of her feet, to lengthen them so she would be able to flex her feet to stand/balance herself. What an exciting idea! As one of Evie's therapists said "we didn't expect her to be sitting so soon!"



Grandma Dellie was in town that same day so we went out to the lake to put up her Christmas tree. The girls love Grandma Dellie AND the lake, so it was a fun afternoon!

We had Thanksgiving at Lyla's school on Thursday, and although you weren't supposed to bring siblings, no one seems to be able to tell Evie that she can't come along (: So we enjoyed Thanksgiving meal together with some of Lyla's new friends, nothing like Deli Turkey, Jello Jigglers, Fruit Salad, Popcorn, and Cookies!

On Saturday we went to our first LPA (Little People of America) event! It was at the Amazing Pizza Machine, and it was so fun to meet some amazing families of kids and adults who have either a form or dwarfism or a skeletal dysplasia like Evie. No one else has hypophosphatasia but that was expected! I have been researching local groups, like the Omaha Down's Syndrome Parent's Network, to find out where Evie and our family would fit the best and I'm thinking this is it. They only have a few events a year, but when Evie gets older there will be events regionally and nationally that she can attend if she wants. What a neat opportunity! We want Evie to have the support, we want to have the support of parents, and we want Lyla to have the support of siblings.

Lastly, the girls both have colds again. I guess that time of year is starting up. So we stayed home on Sunday and put up the Christmas tree! I will put up a preview of our Christmas collage, but you'll have to wait until the Holidays for the full thing!




Love you friends, I'll be back sooner next time! Although it is pretty nice to have "boring" updates! (:

Lindsey

why it's a big deal...

Hi Friends!

We made it through the week, thanks for praying. Blood draw Tuesday went amazingly well, just one poke... Wednesday took 3 pokes, and Thursday only 2. But thankfully we got all the blood we needed.

Our PT Eval on Thursday went AWESOME! I forgot we hadn't seen the evaluator for three months, and Evie has improved so much. Three months ago Evie couldn't roll over, sit up, pick up food with her hands, or feed herself... ALL of which she can do now! Big, big improvements. Then we got to see one of our favorite docs on Friday, he was absolutely thrilled with Evie's progress. We are so lucky to have so many people who take a special interest in our special girl (: On our way home we swung by the pediatricians office for a weight check, and Eve weighed in at 15lb 6oz!!! She is obviously still off the normal growth curve, but her own growth curve is on the right path! (:

And I've been struggling with the oxygen. I tried really hard to ignore it and move on but for some reason since her test it seems like her concentrator buzzes a little louder, and her tanks are a little more annoying... I'm sure just because I was hoping to be done with them. My big struggle with oxygen is that she looks different with her O2 off. And I miss her little face being plastic free. So I decided when I get sad about it I'm just going to take her tube off for a few minutes and get a glimpse of what we have to look forward to. I will post a glimpse here for you to enjoy (:

Love you friends, thanks for praying and caring about us!

Lindsey

downs and UPs.

Hi Friends...

Well we did not pass the oxygen test. I got a call yesterday afternoon and the nurse said that for a total of 1 of the 11 hours of the recorded stats Evie's O2 was less than 90%. Supplemental oxygen is the recommendation (we stay on oxygen). I was super bummed but we had a friend over so I decided to suck it up for the afternoon, cry for 5 minutes after our guest left, and move on. Evie needs oxygen, we stay on oxygen. We have too many things to be thankful for to mope about it.

I thought yesterday was going to be an awesome day, we only had one doc appointment and nothing else on the calendar. After losing one set of keys, locking my spare key and my children in my car, and being 45 minutes to the doc appointment I was pretty wiped out! (: We had lunch, did a little Christmas shopping and sort of redeemed the rest of the afternoon.

On the flip side, I thought today was going to be TERRIBLE, and it was fabulous! We had Bible study this morning (I just LOVE my ladies), dropped Lyla off at preschool, had a very productive 2 hours of sewing, picked Lyla up and headed to the hospital. Prayed the whole way there, and did the blood draw first - they got all 4.5 mLs needed in the first poke. Praise GOD!!!!! Next we did the kidney ultrasound, which was painless and Evie did great. While we waited to be called back for blood Evie was waving, blowing kisses and doing "so big." Everyone loved it, and it was so fun to watch her put on a little show for her audience while we waited.
Lastly we stopped up to see some hospitalized friends, and saw some more friends in the parking garage. It's amazing how present God is in times of trouble. He truly has a peace that transcends understanding. My heart aches for my friends who are hurting, but blessedly they all know Jesus and are relying on his grace.

So there go my expectations! Maybe if I start expecting terrible days they will all go this well (: If you could pray for our friends, they are really hurting. Also we have to collect overnight urine tonight (kind of torturous) and x-rays tomorrow, which we both dread.

Love you friends, I could feel your prayers today and truly deeply appreciate them.

no news is...

no news! Our pulmonologist was out of town this past week so we are waiting to hear results of Evie's oximetry. I am getting the feeling that she is borderline as far as getting off O2 and they may leave her on for a few more months, which is okay. Better safe than sorry... OR she could be doing completely great. I'm trying not to get my hopes up. I will let you know as soon as I hear!


Evie is doing SO great. She pushes away her bottle the minute she sees food. Food, food, food, it's all she wants, which is good! We have her 3 month check this week, so it will be fun to see how she has grown. Like I've mentioned before we have a check every 3 months that includes 3 blood draws, a couple urine samples, kidney ultrasound, full skeletal x-rays, scale of infant and toddler development, and a doctor exam. Honestly, I'm dreading everything except the development check and doctor exam. Evie is finally to the age where she understands that people are essentially hurting her when they poke to take blood, and looks at me like 'mom! why are you letting them do this to me.' It's really hard. Really really hard.


On the positive side Evie has progressed so amazingly physically, her developmental check will be super fun. A lady flys in every 3 months to do her checks, so she hasn't seen all of Eve's new tricks... rolling over, sitting up, chatting, etc (: I can't wait to see the look on her face when she sees how well Evie is developing! And our doctor exam is a lightweight exam to check weight, height, etc. and I just LOVE our doc, so that makes it fun.


This week has been a tough one. Several of our friends are having health issues, and my friend's sister was in a terrible car accident. Being hospitalized is so fresh in our minds still that it's hard to know our friends are enduring such pain. My heart breaks for them, yet my faith is always renewed to know that God loves us, and wants us to come to Him in our pain. He is listening and healing. Friday night John took me on our first date without Evie in over a year! It was so fun to talk, listen, and love each other with no distractions. I don't think we'll wait a whole year before we go out again (:

I haven't had a "list" of prayer requests for a while, but have a few this week if you are willing to pray for us:
- our friends who are going through health problems, health tests, and pain. Healing and strength for all involved.
- Evie's blood draws. We have draws Tues, Wed, and Thursday. That she knows how much I love her even though we have to get her blood, and it hurts.
- Evie's x-rays on Wednesday. I'm going to ask if they will let me wear a vest and stay in the room with her. It's too painful to watch her cry and look for me in a panic.
- That the people involved in Evie's care feel Jesus' love from us even though I'm tired from this past week, and not really looking forward to the coming pokes.


I truly love you friends. I am so incredibly blessed to KNOW you are praying for us.



Here are some great pics from Halloween. Thanks Papa Steveo!

our little penguin

our little shark

group picture! the dino, penguin, and shark on a candy mission! (:

... trend oximetry happening now!

Hi Friends (:

We are 3 hours into the monitoring of Evie's oxygen, heart rate, and respiratory rate with her having NO oxygen on. I am just loving her little tubeless face (: We might not be able to sleep without the rhythmic humming of her concentrator tonight but we'll get used to it! I honestly have no idea how the test is going to end up... she needs to stay above 90% saturation on her oxygen and she has been all over the place, she hit 96 at one point, and was at 87 at another. Luckily I don't have to read the test (: The nurse at the pulmonologist's office said she will get back to us by Monday... we're hoping by Friday, but it's already been 10 months, what's one more weekend.

Love you friends! Thanks for praying, you're the best!
Lindsey (: