An island

Once we learned about Aggie's diagnosis of PVL, most of the information we received regaurding her condition was online. The Doctors have not been very helpful in what to expect b/c it can be such a broad range of symptoms. All are afraid to make any wrong guesses it seems. This has left me very curious and a bit unsatisfied. I want to trust God daily for the grace we need as symptoms arise, but I also do not want to be blind-sided by unexpected things if it is a matter of me not being educated. All this to say, I found a page on facebook, of all places, that is for mothers of children with PVL. I'm not the only one who feels in the dark about it all. It was such a neat thing for me to be able to read and relate with and see pictures of other children with the same condition. There do seem to be a very broad spectrum of possible outcomes. Incase anyone else is curious click HERE.

More on that

Aggie had a well check today. She had 2 infected ears. Poor baby. That would explain the fluid Dr. Powell was talking about on Monday. Apparently it takes 8 weeks for the ear to fully recover from an infection (who knew). So it works out that she won't see the ENT until May for a "follow-up". They are going to proceed with making the hearing aid (it will be pink). I asked for lavender since according to "Fancy Nancy" " lavender goes with everything", but in our case light pink will have to do.

Also, on a not so fun note, or maybe just a reality check? Her head did not grow in proportion with her body, which is an indicator that her brain is not growing. Sigh......... pray for a growing brain.

She weighted in at 13lb 4oz, still gaining, just barely. Better than not at all. She is a great eater, so we have that going for us.

Ears

Aggie got her right ear"molded" yesterday for her hearing aid. She won't actually be getting her..... piece until Mid-May, I think? They think she has fluid in her ear so it is not responding normally for her, so they are unable to evaluate her aid needs completely. We have to wait for it to dry up and for the ENT to look in it and the 1st available appointment that we were going to be in town for was May 9th. So after we get the go-ahead from the ENT, then we can proceed in hearing-aid land. I'm kind-of wondering if she will need a new mold by then?? I'll have to ask someone that. Someone told me that she would need new molds monthly. We shall see.

One Whole Hand

Shiloh turned 5 on Friday. It may be the first time we celebrated on her actual birthday. We had a pizza party at the house with a handful of friends. It was extra special because her cousins from Missouri were in attendance. She was thrilled b/c I ordered my first ever cake from Wal-Mart in the theme of Repunzal. Who is all the rave around here.

Mike captured both of us making a good face. We were in awe of pony-tail holders. Plus it's a good shot of the whole party. We are so thankful for the gift of our eldest daughter she is a real gem to us. Happy Birthday my sweet baby.

A Fine Day or Two.......

My older brother and his family came to see us last week. Aren't they lovely. We had fun playing and playing some more. The weather was beautiful their entire visit, peeking at about 80 each day. It was perfect for playing outside, so we did. We went to the beach one day, the ocean was chilly, but the children didn't seem to mind. We also went on a dolphin cruise one day and we got to see several pods of dolphins very closely. Additionally, we got to see some very young baby dolphins. Soo cute, and a first for me. It was so fun having them! Thanks for coming guys!

Abstract

Airplane

By. Hosea

Sitting up

This is Aggies next mile-stone. She's well on her way.

Hair

Before: Wild in Winter

After: Clean in Spring

My fair Lady

Mema

As you know my lovely mother was here the week before last. Since I was unwell for the 1st half of her visit and the kids the second half we didn't really do too many fun things. But since this is Shiloh's birth month Mema took the opportunity to celebrate!
Shiloh loved it! I don't think mom minded much either. She loves her Mema!
Thanks mom for the many loads of laundry and dishes!

The Story

The Story.

Intense

I love Hosea's eyes! He is rarely serious or still, except occasionally when he awakes. When he is they are so intense, like his father.
He has such soft rounded features. I love the post-nap cuddle.

Sweet and Petite

I love standing Aggie up and looking at her sweet little frame. But I am never able to snap a photo b/c my hands are full. So I borrowed Mike's hands. Look how cute!


I caught her mid-sentence. What a funny face.

Be Encouraged

My sweet friend shared this song with me, "Forever Reign", by Kristian Stanfill. It truly touched my heart. Check it out. Thanks friend!

Round Two

My Shiloh awoke yesterday unable to walk. Her ankles are stuck with her toes pointed. She had a fever through the weekend, I think a total of 4 days. I was thinking she had a cold, she was coughing and congested. I took her to the Dr. yesterday and she has pneumonia. She will be re-checked tomorrow. Hosea awoke this morning crying and with fever, he has a tummy virus. I decided to go ahead and get Aggie checked out since she's also been congested and has a weeping/matted shut in the morning eye, thankfully all she has is an eye infection. We also had to tell Mema bye this morning, she will be greatly missed. I am thankful for my double stroller and front pack, as both proved to be invaluable at all 3 of our appointments today. The Schloss' will be laying low the next couple of days until all are feeling better, except for appointments of course.

Shiloh has begun to walk on her tip toes, it seems to hurt her to put her heel down. I think she is getting better. They think it was a virus?

Eyes

Aggie saw the Opthamologist this morning. He reports that her sight is appropriate for her age and will check her again in a year. It was nice to get a good report.

Flower Girl

A sweet young couple at church have asked the children to be in their wedding this summer. We of course are honored. This is Shiloh in her dress, she loves it! My beautiful little girl.