Home Sweet Home

Hi!
We are now home in Hattiesburg...yea! We've been here going on two weeks now...I think. We are so thankful to be home. Selah seems to be adjusting to her new environment. She is still gaining weight and growing. She is doing well with her trach and g tube also. We are going to Jackson a lot for follow up doctor visits. Our days consist of caring for Selah and going to doctor appointments. She has different equipment set up here at the house that is necessary for her to have daily. Spencer has gotten creative and figured out ways to make all the euipment more "portable" so we can move it around the house with her. This has helped...to be able to leave her room. We are still trying to figure out a routine and schedule...not sure if you ever get one just right. She is sleeping pretty good. Her days and nights may be mixed up a little. We have her in our room at night set up with her equipment and we are playing around with not taking sleep "shifts." We are just trying to figure out what is safest and will work...it is nice to lie down beside Spencer at night rather than just passing by him as we take our "shift." So, we are good, just trying to take it day by day.
The first week was emotional, sleep deprived, exhausting...shall I go on :). We are feeling a little better though and things seems less "intense." We are truly thankful to have this precious baby here with us and we just have to remember that in the "moment." We've had so much support from our family and friends and we are truly thankful!
The next "step" for Selah is the jaw distraction surgery. We are looking at having this done in July. It is a hard decision...to think of putting her through more surgeries, hospital stays, etc. We are just getting her home and settled and to think of taking her right back is hard for me. But, we want to do what is best for her. The doctors recommend going ahead now, July, and proceeding with the surgery. The hopes are that it will extend her lower jaw out enough to open up her airway. If her airway is opened up enough then we can possibly look at the trach coming out (eventually) and having her breathe on "her own." If this was successful then we hope that she'd also be able to feed on "her own" and be able to have the g tube taken out. So, this first surgery is to try to accomplish that. It will be a gradual process.
She will have to have further surgeries as she grows and develops. Her jaw is underdeveloped and they say will not grow as she does. This will have to be corrected as well as if her teeth are affected. So, really this will just be addressed as she grows. For right now we are looking at trying to open up the airway.
We will also meet with the doctor about her hands and the options for that. She doesn't have a thumb on either hand. We will look at the best optons to handle this and the timeline. We are waiting on getting financial approval through Mediacaid for Disabled Child Living at Home. This program is based on the child's disability and will help pick up the financial bills/expenses that insurance doesn't cover. She has to be ruled eligible to receive it though. We have applied and are waiting to see about that. We hope and pray she will be eligible and we can go ahead in ordering her hearing aids and taking care of other needs.
So right now I think that is where we are at. We look at pictures of Selah when she was first delivered and how far she has come already. We hold her now and look at her beautiful blue eyes and are truly blessed. When the moments of uncertainty or "why" hit, I try to remember all the blessings in where we are at right now. God has been reminding me not to miss out on all the "sweet moments" along this journey. I read this morning about Abraham and his story. I concluded reading about how despite the unanswered questions and unseen pieces of the puzzle, he had faith and he was blessed. I pray that in this part of our story and Selah's that we like Abraham walk in faith and continue to cling to God's promises and hope.
"Yet he did not waver in unbelief regarding the promise of God, but was strengthened in his faith and gave glory to God, being fully persuaded that God had power to do what he had promised." Romans 4:20-21

We truly value your support and prayers...thank you, we love ya!!!

PS The "boys" are home...Stud and BB...and thankfully that is going well...answered prayers! :)