Big Girl

Look at the big girl--getting so close to sitting up!

Lyla Jane is 8 months old

Every minute, every hour, every day, every week, every month is a gift and a miracle for this precious little girl who wasn't even supposed to make it to her birth.

If you haven't read about her Trisomy 18 then do! click here

She is so full of life!

A Hawaiian Visitor

Joel's Uncle Paul came to visit for the week, all the way from Waianaie, Hawaii. John & Carol (Joel's parents) have been showing him all the "sites" in our area. He is having a true Midwestern experience. Joel and his brother Joshua even took him fishing on the Mississippi. And of course he had fun getting aquainted with Lyla too. :)

Joel, John, Uncle Paul, Joshua

The Little Trooper

She's still smiling even though she isn't feeling so hot. She is on an antibiotic called Augmentin and it's a strong one--it's giving her diarrhea and causing her tummy to be pretty upset, not to mention a sore bottom and a sore mouth from teething. She's not eating well at all either. :( Please pray that she'll be feeling better soon.

Note the tooth!

Eagle

This is a photo of a juvenile bald eagle that Joel took while he was camping on the river. The eagle allowed Joel to get pretty close to him, as you can see. Thought this photo went well with one of my favorite verses.

Isaiah 40:31 But those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

Thank You Lord

Lyla got to come home today (yay!) and is on a new oral antibiotic. She's taking it great and seems to be getting back to her smiley self. :) Her surgery will be one month from today.

Joel and I just got done watching the movie "Facing the Giants". If you haven't seen it, go rent it. I know for a fact that God had us watch this movie tonight. His timing is perfect. The whole theme of the movie is do not fear, with God anything is possible. How fitting for our lives right now. There is so much to be fearful about--Lyla getting another infection, her surgery, her future. But I am learning not to fear. It says in the Bible 365 times "do not fear". God is on our side so there's no need to. Wow.

Isaiah 41:13 For I am the Lord, Your God, who takes hold of your right hand and says to you, Do not fear; I will help you.

And just as profound for us is that with God all things are possible. Even Lyla's healing. Sometimes it feels like a leap of faith for me to believe that God would completely heal Lyla. It seems like very few, even fellow Christians, truly believe that God could heal her. But He has done greater things than that. Doctors don't think it could happen, science says it can't happen, the "natural order" of things says it won't happen. But Jesus said "Everything is possible for him who believes." (Mark 9:23b). And we believe Jesus' words. God is building our faith, and our prayer for Lyla is for complete healing. Mark 10:29 says "Jesus looked at them and said, 'With man this is impossible, but not with God; all things are possible with God.' " Yes they are.

Doing better...

A quick update--Lyla woke up all smiles this morning and really seems like she's back to herself. Looks like we'll be going home tomorrow once they can figure out which oral antibiotic to put her on. Also, her surgery is probably going to happen on August 25th--only a month away! If all goes well, hopefully we can stay away from the hospital for a good long time. :) Thank you for your prayers and for so many encouraging emails. Love ya! Jenny, Joel & Lyla

PS--Her second tooth is breaking through! :)

In the hospital again...

Please keep Lyla in your prayers as she is in the hospital for another UTI. Hopefully she can have the bladder/ureter surgery done soon so that she won't keep getting these infections. This bout was accompanied by a fever and vomiting and lots of discomfort--poor little angel is pretty miserable. We're praying that she feels better quickly--her first dose of IV antibiotics is already in. Take care, Jenny & Joel

Nelson

Well, Lyla finally got to meet her friend Nelson! He is our friends Mark & Karn's new son! He came home about a week and a half ago from Ethiopia. He is such a handsome and sweet little guy! We have been waiting eagerly to meet him for sooooo long. Thank you Lord for finally getting him home and into the loving arms of his parents Mark & Karn.

Enjoy the pics--I'm sure there will be many more to come...

Lyla at the Fair

She was a little tired but still really interested in all the animals. :)

I think we're due for a trip to the zoo!

Thoughts...

Sometimes it's so easy to slip into thinking about what the future may hold, and to fear it. It's so easy to let my mind wander into the realm of what could happen to Lyla, and all the hardship and difficulty that could involve. Most days I'm fine and can keep those thoughts at bay, realizing that it's absolutely pointless to worry about stuff like that. But some days those thoughts just sneak in and it's really hard. I cannot imagine what our lives would be like without her. She is pure joy, an absolute bundle of love and innocence, and a blessing beyond what I could've ever, ever imagined. I'm so thankful for her and for how well she is doing. Having Lyla has taught me to lay bare my heart before the Lord and absolutely trust Him. He is the best parent she could have and I know He loves her even more than I do (which is hard to comprehend sometimes). And I know He has a loving purpose in all of this.

Psalm 40: 1-5 I waited patiently for the Lord; he turned to me and heard my cry. He lifted me out of the slimy pit, out of the mud and the mire; he set my feet on a rock and gave me a firm place to stand. He put a new song in my mouth, a hymn of praise to our God. Many will see and fear and put their trust in the Lord. Blessed is the man who makes the Lord his trust, who does not look to the proud, to those who turn aside to false gods. Many, O Lord my God, are the wonders you have done. The things you planned for us no one can recount to you; were I to speak and tell of them, they would be too many to declare.

God's Word gives me courage.

Anyway, she is still doing really well. She is making good progress in her fine and gross motor skills. The Birth to 3 PT and OT are very happy with how she is progressing along. She is starting to reach for toys and really likes to shake them. :) Also, she's getting pretty close to sitting up--seems like her trunk control gets better every day. Her doctor is impressed with this, as most Trisomy 18 babies never sit up or don't do it til they're 2 or 3. Lyla continues to amaze. Looks like she may have the surgery to fix her ureter and bladder sooner than we thought. The I.D. doc thought she would become resistant to her prophylactic antibiotic within 2 months, meaning she would need to have the surgery possibly in September. We are meeting with the urologist/surgeon on Thursday (7/23) to see what he thinks. Please pray for wisdom for the doctors and for us--that the best decisions will be made for Lyla.

On a happy note, Lyla and I will be flying to Arizona on July 31st! We decided it was time for her to see where her other grandparents live and where her cousins and aunt & uncle live. We will be staying for 6 nights and we're very much looking forward to it. We plan to stay inside in the a/c since temps there are soaring above 100!

all tuckered out

Special Visitors

Today my great aunt Joanne and great uncle Gordon stopped by for a visit. They live in Spokane, WA but have been in the Midwest for the past few weeks visiting lots of family and friends. We were blessed to be a part of their trip circuit! They enjoyed meeting Lyla for the first time face-to-face. :)

And one more cute pic from Auntie Suz :)

Friends

Here is Lyla with her friend Bella--they are just too cute.

The Tooth!

Just realized after work today that Lyla is getting her first tooth!  I can feel it and see it--tried to get a pic of it but it didn't turn out too clear.  If you look closely you can see it though.  I can't believe she's getting to be such a big girl.

It's her bottom right tooth that's coming in.

She's sucking on some watermelon here and loving it!

Lyla's classic--two fingers in the mouth :)

Happy Belated 4th of July...

Hope you had a fabulous holiday weekend.  :)

Aunties Galore!

Three of my aunts and my Grandma Irma came to visit while Linc & Abby and co were still here.  They got to meet Sophie for the first time, and my Aunt Rita got to meet Lyla for the first time too.  What a blessing to have such a loving family and such fun visitors.  

The fun never ends! 

Lyla, Aunt Mary, and Aunt Jane

A big smile for Aunt Jane :)

Grandma, Mary, Lyla, Jane, and Rita

Auntie Rita holding Lyla for the first time.

More Cuzzie Pics

I just can't resist posting pics of my sweet nieces and my wonderful brother and sister-in-law!  We had such a fun time with them--the house is a little too quiet now that they're all back in AZ. :(

What a sweet family--my brother Linc, sis-in-law Abby, and nieces Charis & Sophie

Sophie, Lulu, Charis

Rosy-cheeked sweetheart

We went to Riverfest and Charis did the bungee-trampoline--she's getting to be such a brave girl.

7 months old and counting...

    Well, as many of you know, Lyla was in the hospital again over the weekend because of another urinary tract infection.  This time she was only in for 3 days instead of 5.  With some testing she had done, it was found that she has some anomolies in her urinary tract and right kidney which makes her very prone to getting infections.  She will now be on some antibiotics all the time to keep her from getting recurrent infections.  But we got to come home on Monday and she is doing great!  Back to having fun with her cuzzies Charis and Sophie and Uncle Linc and Auntie Abby.  So thank you for your prayers and love sent our way.  As always, we give thanks and praise to God for always taking care of our little Lyla Jane.

    Also, she turned 7 months old on Sunday, the 28th!  She is getting to be such a big girl--she's really getting good at eating her rice cereal with bananas in it.  She even tried some chocolate frosting during her little birthday party at the hospital!  Enjoy the video and pics.

        

Mmmmmm....chocolate  :)

The Birthday Beauty

(apple photos compliments of Auntie Suz!)

Lyla loves her Uncle Linc and Auntie Abby too!