So it has been several months since my last posts and a couple of years since I have blogged regularly and honestly I figured my blog was dead. I just kept it here so I could go back and look at certain events that have happened in the last 6 or so years.
But then about a month ago someone told my husband, "Tell your wife to journal these things." I thought about the physical journals I have and most of them either get lost, packed away or who knows what else. The only place where I know I can find stories is here. So instead of letting this sit forever and refuse to post because I got out of the habit, I decided I want to journal these things down here.
How fun is being 5?! The girls are full of joy and laughter. Exactly what we prayed for them when they were still being formed. They started TK last week so we can have 1 more year to get a little bigger and stronger and be some of the oldest in their Kindergarten class instead of the babies. I am so happy we made that decision.
Liana is doing wonderful and having this extra year of play and shorter days will be great for her. She has gotten so good at using her "pretty side" and can now turn the wheel both ways on the outdoor Barbie Jeep. She can dress herself now and will remind us to put on her brace so that her ankle can be strong...this is certainly a huge shift from when she would cry because she couldn't wear flip flops (although she still gets some flip flop time too). The cast that she had a few months ago helped her so much. She is doing great now and having a brace to wear at night seems to work really well for her.
Adleigh is doing great and stepping into being a protective sister. We encourage her to help Liana at school. It is hard to encourage your twins to be different people but still not want one to get left out. But I think that is something they will learn to master as they get older. We overheard a child asking Liana about her brace and then Adleigh piped in, "I had a hole in my heart but now it is fixed."
Seeing the girls grow up and watching how twins interact is fascinating. They get along so well at home. I do think they will be incredibly close as they get older.
She is the sweetest and the craziest. This kid is vocal and non-stop. She is crawling everywhere, wanting to walk so bad, and trying to tell everyone what is on her mind. I think spirited is the perfect word for her. It is so fun having a single baby after you have twins. Everything seems so much easier and you feel like you can do anything with just 1 baby. So far Sydney has had a healthy first year. We have had 2 coughs that needed antibiotics and we continue to do breathing treatments, chest therapy, enzymes and medicines. I hope we can get the vest soon because chest therapy is the hardest to get her to do. She always wants to chew on the percussor. She has 5 teeth now too so she is chewing on everything! Since the last post, Sydney had her ostomy reversed and did super well! We have had 6 months with no bag and it honestly feels so weird remembering we used to change a bag instead of a diaper.
I am such a blessed mom and so thankful for these 3 miracles. I have been praying Psalm 103:2, "Praise the Lord, my soul, and forget not all his benefits." God loves each one of these girls more than I ever could. I can't wait to see how each of their lives will unfold and excited to know that each one of them already has a story to tell from their own life of God's goodness, love and protection.
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)
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!
Liana does this thing where she will make an elephant sound whenever we see or talk about an elephant. So of course I tried to get in on video forever and like all tricks you say your kids can do they end up never doing it on demand. So I finally got one video where we ask her about a thousand times what sound the elephant makes and she does it! But to make it even more awesome, in the video you hear Adleigh say, "oh wow" super clear. She is becoming quite the little talker.
This is the last set of pictures that I have been meaning to post. But hopefully I can keep thinking of some stuff to post after this so that I don't have a blog drought for 3 months :)
Pastor Steven Furtick gave our family the gift of a photo shoot for Christmas with the amazing Sean Lyon. We got all decked out in our Christmas clothes and we loved the pictures! The girls look so beautiful in their red dresses. Thank you so much Pastor for the amazing gift! I love the picture of Adleigh pulling off her shoe...definitely a great picture of her crazy personality! And you will see in a lot of these Liana is clapping, that is because the best way to get their attention and to make them smile was to sing "If your happy and you know it, clap your hands." She would always participate!
Liana has been taking a few steps for about a month now, but Thursday during her physical therapy she decided to really go for it. She walked back and forth across the room almost the entire therapy time. Her highest number of consecutive steps (with no help) was 18! Obviously I ended up getting the camera after she was getting tired so her best ones were at the beginning of therapy, but this video will show you just how amazing she is!
God has been so good to us and He has used our girls countless times to show us how mighty He is and that He answers our prayers, even the audacious ones! Liana has come a long way from the preemie they wanted to take off life support and it is all because of our might God! Enjoy the video.
I am back for day 2. What up?!??!
I have two sessions of really amazing pictures that our friends did for us and I knew that some people would really want to see. Today I am going to post some pictures done by Cheyenne Shultz. Here is her website. She and her husband Geoff are absolutely amazing and we loved taking our pictures with her. You should definitely check out her site if you are getting married because you would have the most amazing pictures!
Anyway...here are some of the awesome family pics.