This is a prayer request post.
I copied this report from the Stegall family’s CaringBridge website. Many people have been praying for baby Eden Stegall. I’ll let you read Sara’s update today below. Her prayer requests are at the bottom of the update. Please be in prayer for Eden and her whole family. They encourage me with their positive attitude and trust in God. It’s hard to say who among us could claim the same strong faith in God if we had to face the same challenges. If you’d like to see their story on CaringBridge, here is the link to their story: http://www.caringbridge.org/visit/edenstegall
(Personal Note) I’m still on sabbatical and being blessed daily. I can’t wait to share my Summer of God with you. And I had nothing to do with any advertisement that may appear at the bottom of this post–arrrrgh! :>(
Complicated But Beautiful
Written 22 hours ago by Sara Stegall
We met today with Debbie, our TEIS (Tennessee Early Intervention Systems) coordinator. She got to meet Eden, and basically spent time giving us a plethora of information and papers to sign. This is a free program involving speech, occupational, and physical therapists to work with Eden until her 3rd birthday. It was pretty overwhelming to hear about everything, and while at first I thought all of it was going to happen in our home, it sounds like some of it may need to happen outside of our home due to insurance reasons. These appointments along with her regular Cardiology, Thyroid, GI, regular Pediatric check-ups, and Down Syndrome Clinics at Vanderbilt, add up to be quite A LOT. I’m going to do my best to have appointments land on Wednesdays and Thursdays, because coming this Fall, our 3 year old will go to Preschool on those days, and our older two will be in Kindergarten and 2nd grade.
The next step with TEIS will be a representative coming over to check Eden out. We then, with her help, will decide on a plan for Eden with specific speech, physical and occupational goals that we will work on with Eden on a daily basis. Thankfully a lot of it will just kind of be like fun play time for Eden. 🙂 The most urgent area she needs help with is speech therapy: EATING! She is doing pretty well, but not eating enough by mouth to survive. She still certainly needs a feeding tube to get enough nutrition (breast milk) in her body. She will also need physical therapy in the near future. When she had her open heart surgery they had to break her sternum bone and it is still healing. She is not allowed to be on her tummy for another 3 weeks, in order for her sternum to heal. Obviously this puts her behind on neck strength, rolling over and holding her head up, so we will be doing things to help her with that.
Reality is starting to kick in–THIS is our new life. Lots of appointments, lots of extra support to help Eden thrive and be her very best. But let me just say…SHE IS WORTH IT.
We have some close friends who were expecting a baby at the same time we were expecting Eden. During the pregnancy they got a test back revealing that their baby very likely had down syndrome. We were heart broken for them and didn’t know what to say; no words seemed right. We just prayed. I remember telling Joe, “We are SO blessed. We are about to have our 4th healthy child. We need to be thankful, because we have really been blessed.” Little did we know that precious Eden herself would be born with down syndrome. Ironically enough, our friends just had their son. A beautiful baby boy, without down syndrome. The tables have turned, and I have learned so much and changed drastically since then. Since then, Joe and I have fallen in love with a bright-eyed, curly haired little angel named Eden. And while she may not be what we were expecting, I can STILL say…We are SO blessed. We have 4 precious children, and we need to be thankful, because we have really been blessed.
Life is more complicated than it was about 4 months ago, but hear me…it is also more BEAUTIFUL. It has been so hard, but I wouldn’t change it.
Okay, so some prayer requests:
-Eden has a Cardiology check up on Thursday. Pray that everything is still going great with her heart.
-Eden has a small rash on her wrist. I texted a picture of it to Dr. Mah, and she thought it looked like either an allergic reaction to something or possibly a virus. She didn’t seem too concerned and said that if it was still there on Thursday she’d take a look at it then. Pray that it goes away and is no big deal.
-Eden has been spitting up a lot the last few days. Possibly could be related to the rash she has, but we’re not sure. Pray that we figure out why she is spitting up so much, and how to help her.
Thankful for our slightly complicated, but BEAUTIFUL life.