Sunday, April 15, 2012

big decisions...

Hey Friends (:

People have started calling, so I guess it's time to update you all. We are doing good over here, getting ready for summer and everything all seems to be changing all at once.

Lyla will be finishing up her last month and a half of preschool soon. A few weeks ago I was losing sleep and having chest pains over where to send her to kindergarten. There is a great Christian school nearby, a great public school, and the homeschooling option. After weeks of prayer and talking with Lyla about it, she is dying to go to our neighborhood school. She loved kindergarten roundup and knows a few kids from the neighborhood who will be headed there with her. Her main reason for needing to go to full-day school is "I want to eat lunch at school." It's still a big tug on my heart but I think this is God's plan... for next year anyway (:

I took Evie to Lyla's school for "sibling day" and she had an absolute blast. After talking to her PT and services coordinator she may be eligible for "preschool" at another public school here in our district after her 3rd birthday. It had never occurred to me to send Eve to school until she was 4... why would she need three years of preschool? Well after sibling day we decided to take Eve over to the school to check it out. She walked in her walker right up to the circle where story time was happening and completely forgot John and I were there. Right now Evie gets speech therapy, PT, and OT in our home about once a week. Evie's walking and speech improve drastically every time we learn a new skill. If she went to school she would go four, half-days a week with a speech therapist present, and could receive all of her services at school. On paper it makes sense, we just need to pray big time about what is best for her and our family.

The thought of sending both of our girls to school in the fall makes me nauseous and teary eyed. Preschool is not a done deal, but Lyla has her mind set on kindergarten. At least with Evie home I will have a shoulder to cry on until I get used to it (:

We also switched to a different foster agency in Omaha. We have been waiting since last August for a placement of a child but haven't had success with the agency we are with, so we decided to try something new. It's exciting and scary at the same time. Big prayers to see where this journey takes us. We are also pursuing infant adoption through the same organization, although this process takes a lot longer and we will probably be waiting on that for a while.

The girls have decided to form the "best buddies club" and now sleep in the same room (: While struggling to get Evie to sleep in her bed about a week ago I asked if she wanted to sleep in Lyla's room (as a desperate attempt to get a single good night sleep without her in our room). She was totally excited and for the next two hours Lyla gave her the run-down... "this is a slumber party. I'm the big sister, that's why I sleep on the top bunk. If you need anything, you ask ME. You don't ask mom and dad, because that is why this is a slumber party." repeat... repeat... repeat... The late night conversations and giggling are slowly getting better, and Eve has slept in Lyla's room for over a week. I offered to let her sleep in our room last night because she has a cold, and she screamed until I put her back on Lyla's bottom bunk. She apparently likes it there (:

Lyla loves being the big sister, and it's really fun to watch the girls grow closer together. It's fun to have them in the same room, but also causes me to think... Switch foster agencies and have an empty bedroom in nearly the same week? What's going on here... (:

Evie is doing great with her walker... she wants to take it EVERYWHERE! It's so great to see her becoming more independent. I love when I open the van door and she says "walk walk walk" because she wants to take her walker with us. She is at such a fun age, I'm really looking forward to spending the summer with both girls.

On the health front, after Evie's seizures in January her pulmonologist (lung doc) suggested we see a cardiologist (heart doc). We did that last week and all of the tests came back fine, Praise God for that. There is still some apprehension about whether or not Eve can hear correctly, so we see the school audiologist tomorrow. It will be interesting to get his perspective. I know she can hear me, I just don't know exactly what things sound like since her speech is off, for example she could hear like she's underwater, people could sound like robots, who knows. Hopefully we'll have a better answer tomorrow.

I took Evie in for a weight check last week because I was afraid she was losing weight, and she had actually gained a pound, she's back in the 1% of weight. I am really proud of her. Lyla has decided that she should eat like an adult and sleep 12 hours a night, and has grown an INCH. Her tight little pants are now loose and too short (:

Easter was incredible this year. When we turned the calendar to April, Lyla gasped "Oh no, Jesus is going to die soon." She pays very good attention to things and it was fun to share the joy of Easter with her and our families, because He Rose!

I apologize for not blogging sooner, with the nicer weather I spend most of the day chasing the girls around outside, or running from one activity to the next carrying Eve, our bag, her walker, and making sure Lyla doesn't run across any parking lots. I haven't been this tired in a while.

Love you friends, I will update soon (:

Wednesday, March 28, 2012

FREEDOM!

Sorry it's been so long since i've posted... I've been chasing Evie around!! She got a new walker a few weeks ago that we take EVERYWHERE... and today her PT brought her some new canes! We are still getting the hang of them (:







She has managed to stay well the past few weeks and is just doing totally awesome.

Love you friends, thanks for checking in!!


Thursday, March 8, 2012

HPP (and Evie!) hit the news

Hey Friends!

This week is a big week for Evie's drug treatment... the results were published in the New England Journal of Medicine today. It is so wonderful how well the kids are doing who are receiving the medicine. As a result I did a few interviews that have been published on line. I will link them here for you to read in addition to a few other articles about the treatment!







Thanks for your prayers over the past 3 years, it has been wonderful to watch God work in Evie's life. I am in awe of his goodness.

Lindsey

Wednesday, February 29, 2012

Happy Rare Disease Day!


Hi Friends!

We found out a few weeks ago that International Rare Disease Day was Feb 29th this year, so we ordered our shirts and got ready! Here are a few pics from today of us sporting our shirts to help raise awareness of hypophosphatasia (hpp), talk about how it's affected our lives, and the importance of people reaching out so they don't feel isolated.



It was so fun to look at all of the pictures on facebook of people Evie's age and older, to see how she might progress as she grows. We are blessed to have an active community with so much loving support (:

Hope you all had a blessed day as well!
Love, the Elsaessers (:


Monday, February 27, 2012

She sleeps!!

First of all, Evie finally feels better... Praise God and thank you for your prayers!!!

That being said, we decided she could go back to sleeping in her own room last night. We all thought that was a great idea except Eve of course ): so we let her cry it out for a while and after a few reassurances and drinks of water she finally fell asleep.

I woke up this morning to the sound of the girls chatting about what to do today (: Evie had woke up, got herself out of bed, crawled to Lylas room and woke her up! Lyla got herself dressed and put Evies shoes on over her braces, it was just the sweetest thing.

She is already asleep in her bed tonight, I am praying it goes as well as last. Thanks for your prayers and words of encouragement they mean the world to us when we are exhausted and down.

Love you friends (:

Thursday, February 23, 2012

answers...?

I was going to title this post "so many answers" as a sarcastic response to our appointment this week, but I didn't want to get anyone too excited (:
Evie's pulmonology appointment this week went okay. She has been super sick with an upper respiratory virus for about two weeks so it was a good time to see the Lung doctor. He doesn't think that the breathing issues that Evie is having during her seizures is a lung problem and has recommended that we see a cardiologist. We are waiting to hear from their office. He thinks that if she is having abnormal heart rhythms while she is seizing that may be why her oxygen saturations drop so quickly. We did a quick EKG at his office so we have a baseline for future reference.
Eve has been coughing, gagging, and fevering for about 10 to 14 days, hence my lack of blogging. I feel really bad for her. She is slowly getting better as some new steroids kick in and help open up her airways. When she's sick she prefers to sleep with John and I, needless to say we are all a little tired (: Someday maybe Evie's geneticist, pediatrician, pulmonologist, neurologist, neurosurgeon, plastic surgeon, orthopedic surgeon, opthamologist, ENT, (soon-to-be cardiologist), physical therapist, occupational therapist, speech therapist, and services coordinator can all get together and figure out the mystery that is Evie (: Actually, that would take away the pure joy we have at watching her grow into her own little self every day.
Thanks for loving us and checking in. Hopefully I will be back with good news of good health very soon!
Lindsey

Saturday, February 11, 2012

"spells"...

Hey Friends,

We finally saw Evie's neurologist this past Thursday, the results were a mix of good and bad.

The neurologist is "fairly certain" that these spells Evie is having are seizures. They get worse when she's sick, better when we up her seizure meds so that would lead us to believe they are seizures.

Evie's EEG the morning after her day of seizures on the 23rd was actually not normal. The hospitalist told us that it was "normal for Evie" yet her neurologist said they were comparing it to the EEGs that she had during the first months of her life when her EEGs were anything but normal. She is having some "spikes" and "abnormal brain activity." Not great. We are scheduling a follow up EEG to make sure we're not missing anything.

My main question was why these seizures are causing Evie to stop breathing. Her neurologist said that seizures can cause shallow breathing or delayed breathing, but she shouldn't desaturate as quickly as she has been. She thinks it could be a heart/lung problem so we see her pulmonologist on the 21st of Feb.

The only good news from our appointment is that Evie's condition in general isn't declining. She isn't "getting worse" overall. If all of her body systems were declining we would have a problem, but in every other area she is improving so hopefully this just means she needs more of her seizure med.

I'm a little unsettled. I hope her heart and lungs are okay. We will see on the 21st.

Thanks for praying for us (: Evie is a light in our life and we are blessed to share her with you.