Monday, June 27, 2011

separation anxiety...

Hi Friends.

Where do the weeks go in the summer? I tucked the girls into bed tonight to the smell of chlorine hair and sweaty kid. Must have been a good day (:

We saw the MacDonalds last Thursday for a going away dinner, and said our final goodbyes yesterday afternoon. I never thought I'd seriously say "Thank God for Facebook" but that has been my exact thought several times this week (: It was sad to hug them one last time.

Watching God carry the MacDonalds through this time has brought back so many memories of my pregnancy with Evie. I started a new Bible study this morning with mostly women I haven't met, and luckily I was sitting in the back so hopefully they weren't watching me sit and cry for the first hour. I thought I had developed the skill of not crying in public over the past few years, but sometimes God softens my heart so I listen better. Today we read the verse "In his kindness God called you to his eternal glory by means of Jesus Christ. After you have suffered a little while, he will restore, support, and strengthen you, and he will place you on a firm foundation." What a promise. Pray for the MacDonalds as they take Aria home with them on a three days trek back to New Zealand. That God would restore, support, strengthen them, and place them on a firm foundation.

Both Lyla and Evie have had separation anxiety lately, which is actually quite odd around here. Lyla is in general pretty independent but I have been hearing more "I want mommy" lately or demanding hugs and kisses. Talk about softening my heart. Since Evie has been off of O2 the past few weeks we have been leaving her in the nursery at church and at the gym, and it has been doubly hard to be away from her even for a few hours the past couple days. So I guess the separation anxiety is going in both directions. It feels good to take a break from the hustle and bustle and just cry it out. I haven't done enough of that lately.

We had our first house showing tonight. It's exciting to have people walking through, but I still don't feel the pressure to move. I'm not sure if it's just not the right time yet, or God hasn't shown us where he wants us to go, or the place he wants us to go to isn't for sale yet.... could be any of those. So we wait, look around, and thank Him for the roof over our heads (:

Love you friends. Those pictures I promised are still in the camera sitting in front of me... i'll get to it tomorrow (:

Tuesday, June 21, 2011

croup, teeth, and apnea...

Hi Friends (:

Sorry to leave you hanging yesterday. My heart is so heavy for the MacDonald family it was hard for me to consider writing about anything else.

To catch you up on Evie. The reason she didn't have her ABR today is that she has croup, a nasty upper respiratory bug that makes anesthesia out of the question. It would be unsafe to intubate Evie unless she is in tip top shape, so we will pray for that up to July 5th when she is rescheduled to have the test. On Sunday morning she woke up feeling great, we went to church and lunch and all was well. When she woke up from her nap we noticed her breathing loudly, and by evening she was really struggling. We took her to the ER where she had an episode where she couldn't catch her breath, so they did an epinephrine breathing treatment and admitted her for the night for observation. I'm really glad we took her in, if she had the episode at home we would have most likely had to call the ambulance.

It was funny driving to the hospital Sunday, I shed a few tears and caught myself feeling ashamed. Driving to the hospital last year would have been second nature, but this time I was crying! I feel like I've gone soft and my Emergency Training of Evie's first year of life has gotten weak, but it's also refreshing to realize that a trip to the ER isn't necessarily normal, and I am allowed to be upset.

Also along those lines, last Friday we went to walk around the College World Series opening day with my sister and her son. We were walking around with Evie and her cousin in the double stroller and they were poking each other (a little too much like siblings!) and Evie was getting visibly upset. I bent down to comfort her and noticed her front lower TOOTH was GONE! The older kids who have HPP have been known to lose their teeth early, but I guess I assumed since she was on the clinical trial she wouldn't lose her teeth, but she did. I called her dentist (my dad) who said he'd like to take a look at the tooth so we spent a few minutes looking before realizing that every piece of popcorn, chip and sunflower seed looked like a tooth (: Oh well, we'll catch the next one.

Lastly, we got the results of her sleep study back, and it's confirmed that she has Sleep Apnea. Her pulmonologist explained the two types of apnea: obstructive (something is in the way) and central: where one just doesn't make an effort to breathe. Evie has "central" apnea, meaning that while she's sleeping at times she just doesn't make an effort to breathe. Comforting right!? Since we keep her on O2 all night anyway that should be sufficient for now, and I am supposed to talk to her other physicians to see if central apnea is common with HPP. It is likely that as her brain matures she will grow out of it.

So we see the pediatrician tomorrow to make sure that we are keeping her croup under control, and pray that she feels better soon. I think she is making improvements each day.

Thanks for praying for us, today was the FIRST day in weeks that we've had nothing on the calendar. It was so wonderful. There was a crazy storm that went through Omaha last night, knocking over our one and only tree, so the girls and I spent a few hours chopping it down and getting rid of it, but it felt good to be outside and under no pressure of a schedule. I really needed that.

Continued prayers for the MacDonald family would be appreciated. Thanks for loving us friends, and I promise pictures soon! I have a whole batch waiting to be uploaded (:
Love you.

Monday, June 20, 2011

Finally made whole...

Hi Friends.

Crazy couple days here at the Elsaesser home, long story short Evie is really sick, so no ABR tomorrow. I would like to elaborate on that and Father's day, but today is an important day and I want to commemorate this post to someone special.

Aria went to meet Jesus today. I have a good feeling she has known Jesus, but today she got to see him face to face. It's a glorious day to celebrate Aria having a whole and perfect body. After reading "Heaven is For Real" the simple joy of being in heaven as told by a 4 year old would make anyone excited to go there. I am honored to be friends with Aria's parents, who have stood by her side through over a year and a half of super high highs, and devastating blows. They have maintained a marriage and survived this tough time by resting in God's grace and peace. They are an amazing testament of faith and God's goodness to those who love Him. It's a very sad day for those who will miss Aria. We went to see her a few days before she got really sick and Lyla won't forget going to see her friend.

Join us in praying for the MacDonalds as they cope with this new chapter, and praise God for preparing a place especially for Aria. We'll be there to play with you soon enough sweet girl (: We love you.

I'll be back soon,

Wednesday, June 15, 2011

it caught up with me...

Hi Friends (:

I miss you! Thanks for checking in although I have been so absent lately. I am finally down with a sore throat, dry cough, plugged ears and sinus congestion. I don't know why I thought I could go 100 miles an hour, 24 hours a day 7 days a week and maintain my health. So it caught up with me and is forcing me to sit down a little more, which actually feels really good (:

More importantly, Evie's health. She is doing great! Being off of oxygen has been such a major blessings for all of us. The most important aspect of that being that Evie can sustain her O2 saturation while not having to be hooked up to her cannula 24/7. The second most important aspect is that we are LOVING her sweet little tube-free face! I feel like we have been waiting for so long. I spent a lot of tears missing her little face, and wondering when we would get to look at her without her tube. And the less important, yet really awesome thing is that people don't ask us what's going on with her all the time. She has some space to just be Evie, instead of looking "sick" or getting questions. It's a nice break for everyone.

I mentioned Evie's hearing test a while ago, and we saw the ENT last week. Evie can hear conversational sounds, but possibly not much else. The ENT couldn't really make any other educated guesses at what is going on, so we are having an ABR on Tuesday. An Auditory Brainstem Response test will be done under anesthesia (so she doesn't move) and is supposed to be the most accurate way to find out what someone can hear when they are too little to tell you what they can or cannot hear. You may be wondering why it's important to know what she can hear since she can hear us talking.... the most important reason is that her speech is developing very slowly and she is getting behind target language markers. This means that her hearing is affecting her communication. If we know what she can hear, we can provide her with any aides needed to help her hear and communicate better. So that is what we will find out next week.

Last week I had root canal surgery and Harry got neutered so we were a busy, recovering bunch over here. Lyla also started swimming lessons at a local gym where we are spending a lot of time playing with her and my friends.

If you could pray for us that the girls don't get sick, that would be huge for me. If Evie gets even a smidge of whatever nasty bug I have, there is a good chance they won't do her ABR on Tuesday. It is already approved by insurance (which is a miracle in and of itself) so we would like to get it done.

We thought we sold our house last week and the offer fell through, and we ended up trading John's car in for a minivan! I feel like we have been making some major financial decisions all at one time, and it would be nice to take a break from that. My good friend is going to list our house on the MLS and hopefully we will get some more action using that. I am thinking we haven't figured out where God wants us to land yet... since I don't really feel super excited about any of the houses we have looked at. Some would be a good fit, I feel like I need to invest a lot more time and prayer into the decision. So maybe it's good we haven't sold yet, we could be living in my parents basement trying to find a house, yikes!

Thanks for loving us and praying for us. I am constantly in awe of the number of people who pray for Evie, and the very obvious impact it has on her health. I don't think we would be even close to where we are today without you all lifting her up to our Almighty God who hears, and heals. There is a new song called "manifesto" on the radio, and whenever we hear it Lyla and I sing "AMENNNN!!" at the top of our lungs. I'm so glad God enabled some people to sing and write music so we can worship together.

Love you guys (:

Friday, June 10, 2011

summer wipeout...

Hi Friends.

I have so much to post about, and so little energy to do it. Just wanted to check in and say hi, and that I'm still here (:

Love you, and I'll be back soon.