ASD, casts, and ostomy bags

The next few weeks and months are going to be pretty crazy at our house and I wanted to let those of you that have been praying for us to know specific things you can continue to pray for. We have significant prayer requests for each one of our children so I am going to break it up by child.

Adleigh: She has had an ASD (hole in her heart) since birth that we were hoping to close on its own, but it is still open. This hole doesn't cause her any problems now but if left untreated she would have significant heart problems as a young adult. She has a surgery scheduled Jan 31st to repair the hole. The doctors will go through a vein with the device to implant it in her heart so our hospital stay will only be overnight. Adleigh gets very anxious about medical stuff so pray for the surgery and recovery to go well and pray for wisdom on how to talk to her about the upcoming surgery.

Liana: Most of you know that Liana has hemiplegia (weakness on her right side) which causes her to walk on her tiptoes. She wears a brace on her right foot but right now she cannot get her foot in a 90 degree position. Based on her orthopedist's recommendation,  in the next few weeks she will get 2 shots of Botox in her foot muscles and then wear a cast for 4 weeks to help stretch her muscles. She has been having a lot of foot pain so hopefully this will help have her foot in a position that is more comfortable for her. We are also in the process of changing some of her therapies so we have more freedom to do fun activities that she enjoys so pray for wisdom in that.

Sydney: We had Sydney's first Cystic Fibrosis clinic this month and everything looked great. We love our team of specialists and they all think Sydney is adorable. We received the results from her sweat test which also confirmed the CF diagnosis. Our goal is to continue to keep Sydney and her lungs as healthy as possible. We are praying that her symptoms as she grows will be nonexistent or mild and that there will be a cure during her lifetime. We also met with her surgeon about her upcoming intestinal surgery so we can get rid of her ostomy bag. The plan is to do that in March. That will be a 4-6 day hospital stay. Pray for this surgery to go well, quick healing, and no complications.

Thank you for keeping our family in your prayers! 

O Lord, you are my God!

I will exalt you in praise, I will extol your fame.

For you have done extraordinary things,

and executed plans made long ago exactly as you decreed. (Isaiah 25:1 NET)

Pray for Sydney

I thought I had finished using this blog, but it seemed to be the best way to let everyone know how you can stand in faith with us and pray for Sydney and how to update you on her journey.

To get you up to speed, Sydney was born Nov. 6th at 41 weeks. She seemed completely normal for the first 12 or so hours but then started spitting up blood. The doctors sent her down to the NICU and x-rays showed that Sydney had air in her abdomen. She had emergency intestinal surgery and they discovered her sigmoid colon had ruptured because her meconium was very thick and backed up. The surgeons had to give her a colostomy bag and we were unsure of what caused all this to happen. 

However, this week tests came back and Sydney has been diagnosed with Cystic Fibrosis. It is a very serious condition and to find out more about it you can go to cff.org.  When we imagined adding a third to our family we hoped for a healthy full-term newborn with no complications. To have this diagnosis has been difficult for us but we know that there is a purpose in this situation. We have hope in our God who has been so good to us and who performed miracle after miracle in the lives of our twins. We are blessed by an incredible team of doctors and nurses, and are very encouraged by the medical advancements we are learning about for treatment of CF. Ultimately we know that the doctors do not have the last word, and trust that Sydney's future is in the hands of Jesus. So we are going to believe for another miracle, and would ask that you all join us in prayer. Here are the things we are specifically praying for:

• There are mild and severe cases of CF and it is impossible to tell now what hers looks like. We are praying that she will have a very mild case with no symptoms and that she will have a very long life. Specifically pray that her lungs would be strong and healthy and that her pancreas would function normally.

• Pray for her to stay healthy and free from sickness. This first year is extremely important for her long term health.

• Pray that God will get much glory through her story and her  life.

• Sydney has been in the hospital now for over 2 weeks so we are ready for her to be home. Pray that she can make progress with her bottle feedings so we can leave the hospital.

• She will have her intestine reattachment surgery sometime in early 2013, so pray that it goes smoothly.

• We still have weekly therapies for Liana and Adleigh had a heart procedure scheduled for 2013, so pray that God will continue to heal them and help us manage all of the different treatments.

We have been extremely encouraged by our Elevation Church family and feel so supported during this time. The scripture we have been praying over Sydney everyday has been Psalm 103:1-5.

Praise the Lord, my soul;
    all my inmost being, praise his holy name.
² Praise the Lord, my soul,
    and forget not all his benefits—
³ who forgives all your sins
    and heals all your diseases,
⁴ who redeems your life from the pit
    and crowns you with love and compassion,
⁵ who satisfies your desires with good things
    so that your youth is renewed like the eagle’s.

Thank you for believing with us!

I'm switching things up

First, I have two posts about the girls' one year birthday and our vacation that are coming.

Second, you are going to see this blog change a little. I think I have been so bad with updating because I still saw this blog as the journal of their life in the NICU and I wasn't sure how to make that fit with our lives now. But obviously we are way past that point and the girls are in another chapter of their life as well as myself. So the blog is going to show you more of what it is like raising twins and how I am trying to be a godly mother to them. Honestly, once we brought the girls home I have just tried to keep up with them and I am now feeling such an intense hunger to really delve into scripture and take my prayer life to a new level. So although most of the content will be about the girls, I also want to encourage other mothers who feel like all their time goes to caring for and chasing their young ones. I hope I can stick with this and having your encouragement really helps :) Looking back through all I have written on this blog makes me want to continue even if it is just for myself!

I'll be posting the posts mentioned above soon.

Liana's Therapy is in Danger!

I was told by our physical therapist and occupational therapist this week that there is a proposed budget cut for NC that will look at PT, OT and speech therapy as unnecessary services. They want to cut this from the Medicaid budget which means private insurance companies will follow Medicaid. This affects Liana tremendously! She has had difficulty with her right arm and hand. Since receiving therapy she is able to sit up on her own, fully extend her arms during tummy time, make some attempts at crawling, and grasping objects with her right hand. She already has OT and PT and once she gets a little older is expected to have speech since the left side of her brain (the speech area) was affected by her bleed. She has come so far with having these services and if this is discontinued then it would be difficult for us to afford all of these ourselves. Not to mention a lot of people who get these services can't even afford a car, so having to pay for their child's therapy would mean their child would no longer receive help. 

The bill has to pass 3 committees and then Governor Perdue has to make the final sign off. It has already passed through 2 of those committees. I am asking if you have time to please contact your NC representative and either tell them about your personal story or use Liana's story. You can find your rep by going to the site and looking at the lower right corner to "who represents me." I know our rep is Beverly Earle for Mecklenburg County. You can also contact Governor Perdue (governor.office@nc.gov) since she is the last signature required.

I was also given these numbers:

Speaker Hackney 919-733-3451

Majority Leader Holliman 919-715-0873

Minority Leader Stam 919-733-2962

Thank you for any calls you make, any emails you send and any prayers you lift up. This is important for Liana, but it will also affect so many children that need these services to have any quality of life.

Bless Back Project Rages On

I went to church this Sunday and found out that Elevation had an article written about it in the Charlotte Observer. The Observer heard about our Bless Back Project and put the story on its front page. I am so excited that all over Charlotte random people are being blessed by Elevation Church attendees. I think people have gotten so excited about it they don't want to stop with what the church gave them. Instead they are reaching into their own pockets to figure out how they can serve and help others with the money that God has provided them in their own wallets and checking accounts.


And you Mt. Horeb peeps, I have been looking on the website to see what you have done with your money, even though you live in Columbia you aren't exempt from sharing your Bless Back story online! Can't wait to hear them.

Say it isn't so

I love the show Man vs Wild. For some reason I like the show better than Survivorman. But seeing this article puts a new perspective on things. Some people are saying that Bear Grylls of Man vs Wild is staying in hotels while he is supposed to be surviving in the crazy places. It even says that some of the events were staged like biting off a snake's head, wrangling a mustang, and even building a raft. I still give him tons of credit for all the things we see him do on the show (the dude swims in the freaking Arctic) and he can certainly climb, but if Survivorman does it all on his own then I would say listen to his survival tips instead. But don't worry Bear Grylls, Wade and I will still watch your show.

Relient K

Transformers rocked my face off. It is the best movie of the summer and anyone who reads my blog better go see it. Okay that's all.

In other news, Relient K is this awesome rock band. I remember about a year ago our youth group kids were in this huge Relient K kick. They wanted to play the CD before every Sunday night event. They would wear their T-shirts all the time, etc, etc.
Randomly, I came across an email about their tour bus being destroyed by a fire. They lost EVERYTHING! Computers, cell phones, all instruments, sound equipment, clothes, cameras, and ipods were all destroyed. They got out of the bus just in time and no one was hurt.

So it is going to be a process trying to buy all new equipment and personal items. Just lift them up in a prayer when you get a chance.