Arizona Update!

Lyla and I have been in AZ since Friday and we've been having a blast! The weather is beautiful and we've had lots of time with Uncle Linc, Aunt Abby, the cuzzies, Grandma, and Papa. Lyla did amazingly well on our flight--it was a non-stop which was really nice. :)

We had lots of Halloween fun--Lyla even got to go trick-or-treating for the first time! Enjoy the pics of the cutest little pumpkin in the patch...

Sleeping Beauty and the sleepy bumble bee

Lyla and Tinkerbell

Our little pumpkin :)

Pumpkin carving fun...

Charis in Auntie Jenny's glasses--she looks SO grown up!

11 months old

Thank you Lord for the gift of Lyla Jane on this the 28th of October.

And here's the birthday pixie...

Psalm 40:5 "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."

Lyla & Lulu

That's a mouthful! Lately Lulu is Lyla's very favorite thing! She just gets such a kick out of her--as you can see in the video! Enjoy.

Not Me! Monday

Just for fun I am doing a Not Me! Monday post--it's a fun concept I got from another blog that I follow! Here's a note from MckMama (the creator of that blog):

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

Hmm...well I did not hang out in my pjs until the afternoon every day this weekend, simply because I wanted to be lazy. And I definitely did not take my dog out into the yard wearing only my nightie. Nope, not me!
I definitely did not go out to eat on Saturday night and wake up with food poisoning on Sunday morning causing me to have stuff coming out of both ends. And I definitely did not share that on my blog because that is simply too much information. Nope, not me!
And finally, my husband did not end up wearing my trouser socks to work because he was out of clean socks because his wife hadn't done the laundry in such a long time! Nope, didn't happen!
Hope you have a great Monday and a great week. :)

Staycation

Well, Joel and Lyla and I were going to take a trip to Door County from this past Thursday until today but decided against it. For one the weather was forecasted to be just plain lousy there (even worse than here!) and we weren't quite comfortable bringing Lyla since she is still drinking so poorly. She had two appointments at the clinic--this past week--to try to basically brainstorm with several health professionals to figure out how to get her to drink more, but that's a whole 'nother story. Please continue to pray that she'll start taking in more fluids. (Today she seems to be drinking a bit better.) All this to say, we decided to take a staycation! Joel and I both had off work for 5 days. We have enjoyed just having family time and relaxing at home. We had one day of absolutely gorgeous fall weather on Saturday so we decided to go for a hike and enjoy the amazing beauty of God's creation. I love the fall! And what a blessing to live in such a beautiful area of the Midwest.

Can you see Lulu?

The bean enjoyed the ride :)

New Vids :)

I realized that no vids have been posted lately, so here we go.....

Lyla's favorite toy right now :)

Silly girl having fun

Lyla's friend Nelson showing off his newly-honed walking skills--what a cutie!!!

And PS, I am entering in a Best Buy drawing through MckMama's blog and I need to mention it on my blog to enter! So that's that. :) Hope you enjoyed the vids!

A Precious Gift

Amidst the concerns and frustrations that are a part of being a mother, especially those that are a part of being a mother of a child with Trisomy 18, I will never, ever forget what a precious gift Lyla is. She is a joy beyond what I could have ever imagined. She is a pure blessing, from a God who loves her beyond my reckoning, and who loves me enough to have given her to me, to us, to the world. When I gaze at her precious face in the morning, it's like looking into the face of an angel. My heart is so filled with love that my chest aches. Thank you Lord for creating that amazing love--it gives me a glimpse of the love that Jesus has for his children. It is pure beauty and it grips the heart. To look into Lyla's blue eyes and see such sweet innocence and trust. What a joy. She is so beautiful. Thank you Lord for the precious gift of Lyla Jane.

Ephesians 3:16-19 "I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge--that you may be filled to the measure of all the fullness of God."

I hope that you know the fullness of Jesus Christ's powerful, unconditional, heart-gripping, life-changing love.

Standing with some help--she's getting to be so big.

Update and a few more pics...

Well, Lyla had a doctor's appointment yesterday and an appointment with her pediatric dietitian to try to get to the bottom of why Lyla isn't wanting to drink, and to brainstorm some possible solutions. I noticed that she would start her bottle drinking vigorously and then suddenly just stop after 1 or 2 ounces. I noticed too that she's been a bit more erpie and coughy lately. This brought us to thinking that maybe her gastric reflux is not being controlled as well any more--now that she is bigger. So Lyla's doctor increased her dose of Prilosec to help bring the gastric reflux back under control, and to hopefully decrease any esophageal pain she may be having and thus increase her appetite for liquids. All the while she has been eating her baby food just great though--the doctor and dietitian said that lines up with our theory too because solids tend to stay down better and are more soothing to the esophagus than liquids are. So we are praying this will be the solution--she should be drinking better within about a week. It's so tricky with babies because they just can't tell you what hurts! Also, Lyla now weighs 15 lbs 6 oz and is 27 inches long--she's getting sooooo long! Despite not taking her bottle well, she gained a pound since the end of August and grew an inch in length. :)

After her doctor's appointment, Lyla and I met up with my friend Victoria and two of her girls (Sandra who is 11 months old and Olivia who is 3) at the mall. We had lunch and afterward both Sandra and Lyla got their ears pierced! They did so well--I think Lyla cried less for the ear piercing than for the flu shot she had gotten earlier in the day! They look adorable. My friend Victoria is from Spain--it is a tradition there for girls to get their ears pierced as infants so now all of her 4 girls have their little ears pierced. The earrings don't bother Lyla a bit--I thought she might try to pull at them or maybe be a little fussy when I clean her earrings--but she is none of the above. She's a trooper like usual. :)

Later on that same day the physical therapist from the Birth to 3 program came to visit. Lyla was a champ. She was rolling like it was nobody's business--both ways! We also worked on having her stand next to the couch with her arms on the couch and us supporting her butt--she looked like such a big girl! It made me feel happy and sad at the same time. She's not going to be a little baby for much longer. :) :(

Then today she had an appointment with her pediatric orthopaedist to check on her development and strength/flexibility. The doctor said that she is progressing well but is obviously still behind. When Lyla is about a year old we'll start thinking about braces to help her posture. We keep praying that she will just get stronger and stronger! We would LOVE to see her walk some day.

Meanwhile, in our spare time, we are preparing for:

(1) Our family trip (Joel, Lyla, and I) to Door County on Oct. 22-25

(2) Lyla and my trip to AZ on Oct. 30th to Nov. 6th

(3) The Thanksgiving Extravaganza at my Aunt Jane's house (complete with baby shower for my cousin Kelly's little BOY who is still in the oven, and a double birthday party for Lyla and Gabriel--my other cousin's little boy who is two weeks younger than Lyla). Yip, yip, yip, yahoooo! My parents will be in town for all of this too--yay!

(4) And of course we are preparing for Lyla's First Birthday Bash on Saturday, November 28th! Keep an eye out for an invitation in the mail.

Whew! It's going to be a busy few months, filled with lots of fun, family, friends and fellowship.

And here are a few more pics from when our friends Josh & Sarah came for a visit--photos compliments of Josh. :) These were taken at an apple orchard/pumpkin patch that we visited. It was so fun for the kids and fun for me too because I love the fall and any kind of fallish activities. I guess we all had fun...

Eva, Elijah, Sarah, Josh and Mac

Elijah contemplating which apple to chomp next :)

I was determined to get the perfect apple that just happened to be at the top of the tree.

Our little pumpkin riding on Daddy's back

Yes, we are on the cool bus.

Lyla

Please pray for Lyla's eating. Every day she takes less and less of her bottle. She's getting down to dangerously low daily totals--to the point where we are starting to worry about dehydration. We can't figure out why she won't drink. It gets really exhausting and frustrating when every single feeding is a fight. But we know that prayer is powerful. Thanks.

A birthday cake to remember...

My soon-to-be sister-in-law made me the cutest birthday cake--one that we will not soon forget! I just got the biggest giggle from it and so did Joel. Thanks Bryana!

And this was my special piece. :) (Don't get too excited--the dream in the bubble is still just a dream!)

And it was pink--so fun!

Good fun with good friends

Our friends Josh & Sarah and their three munchkins came for a visit--we had a full house and lots of fun. :)

Eva, Mac, Lyla and Elijah (somebody's causing trouble...) :)

Eva & Lyla sharing smiles

the browned-eyed boysies

Pssst...Lyla, I'm really a Packer fan...my mom just dresses me in this silly purple outfit.

The cutest football fans

Mac & Lyla

What?! I'm not poking anyone...

What a smile :) :) :)

RTR Friday

Okay, so I was just watching a silly home makeover show and, in the midst of the chaos of trying to get a nursery makeover done before the parents arrived home from the hospital, the host gave each of the workers an RTR card--standing for "right to rant"--so they could vent their frustrations. Well, I just gave myself an RTR card. Partly because I want to be honest and transparent about our situation--I'm not always positive and upbeat and full of faith. I'm often frustrated and sad and fearful and sometimes mad. And it's just sometimes therapeutic to share.

Let me just preface this with saying that I know Lyla could be much worse off than she is, or not even with us anymore--I am so grateful for how amazing she is doing and for the way that God has been working in her little body and in our lives. I am truly so thankful.

I thought I was okay with yesterday's news. But, you know, I'm realizing that I'm not totally okay with it. We just had such high hopes that everything would be solved by Lyla's surgery...but it wasn't. Why does there always have to be something wrong? Why can't Lyla have just one day without a struggle of some kind? What it comes down to is that it is just hard to truly come to grips with the fact that this isn't something that's just going to go away. It's hard and it's going to continue to be hard. Lyla may never really be healthy. I guess you just kind of think in the back of your head that everything's going to work out--like water off a duck's back. And then you realize it's not just going to work out. There is no straightforward solution. That's hard to swallow and it sucks. It may always be a struggle. Granted, some days are better than others. But there may always be a struggle--life will never be as carefree as it once was. It's not like a movie or a TV show where everything turns out okay in the end. Life isn't that way. Like my wise friend once said--life is wonderful and beautiful and amazing, but it is also hard.

So there's my rant. If you made it to the end I'm impressed. Thanks for reading.

Jenny

Happy October!

Today Lyla has all the testing done to see if her surgery did what it was supposed to do. Please pray that it did!

Well...Lyla had several appointments today and this is what we learned: Lyla's urinary reflux is resolved--yay! So we can finally discontinue her antibiotic. They did find on her kidney ultrasound, however, that she still has some hydronephrosis (fluid build up) in her right kidney and her right ureter is still very dilated. Lyla's surgeon/urologist was hoping that the surgery would help resolve those things. He's thinking there may be some kind of blockage in her right ureter causing the build up of fluid (urine) on that side. So anywho, we'll be going back in 3 months to have another ultrasound and check it out. Please pray that the problem will go away on its own--we would hate to have to go through another procedure, especially a surgical one.

Also, as so many times before, Lyla is not eating the best lately, and, as usual, we worry about it. Is it because of teething or the antibiotic or is something else going on? We just don't know, so your prayers are coveted in that area too. We do give praise and thanks to the Lord for bringing her through so much lately. Despite not eating much and despite cutting her 2 top front teeth, she has been happy as a clam. So at least we know she's not uncomfortable and that she feels good. :)

Lyla is making some progress in her strength and gross motor skills. She is getting better at sitting up while stabilizing herself with her hands. And she is showing improvement in standing (while we hold her of course) and bearing weight on her legs. This is all encouraging! Her physical therapist is thinking that around 11 months of age or so we'll need to start using a "stander" for Lyla. I guess it's like a brace that helps her to stand up straight so she can bear weight on her legs which apparently helps strengthen her hips and helps the hip joint to form correctly. Another new endeavor for Lyla Jane!

So, thank you for your many thoughts and prayers for Lyla. I'll post some pics & vids soon.

Love, Jenny