Close to Going Home

I'm sorry that we have not been updating the blog lately. However it really is a good thing. Michelle and I have been so busy getting trained up so that were ready to go home that it's been nearly impossible to find time to do anything other than focus on Ry. But we wouldn't have it any other way! We are so excited about the real possibility of going home. We even have a tentative date of January 12th. Thanks again for all of the prayers and support! We feel so blessed to have so many people who continue to be invested in our family. Honestly it blows us away! Please continue to pray for us as we get prepared to make the transition home. It will come with new challenges. But as long as we stay close to the Lord, we will be just fine. Take care, Jared

First Trach Change

Michelle and I did our first trach change on Ryan this morning and it could not have went smoother. We are getting closer and closer to reaching the day when we finally get to go home! What a journey it has been and will continue to be and we wouldn't have it any other way. God has forced us to depend fully on Him and I thank Him daily for that. He has given us a platform to share our faith and bring Him glory, and for that we are grateful. We are honored that He entrusted us with Ryan. Take care, Jared

New Video

Hey everyone. Hope you all had a very Merry Christmas! We had an awesome day with Ryan. Enjoy the new video of Ryan on YouTube. Search Cliffy2120.

Update

Hi all :)
We are so sorry that we have not sent out an update in a little while. But Ryan is a little rockstar! She is off her Ketamine drip, which was a HUGE feat! We are currently weaning her last two drips and then we can just focus on her vent and trach training and then...HOME!!! No date mentioned, but the discussion of home is out there!! Ryan has been also doing some awesome baby things as well as she daily feels better and better. She smiles, cries and batts at toys. Reaching for a toy is a little bit of a struggle for her, but it is so sweet to see her little arm shake as it raises up to touch the rattle. She is just so determined and strong!! She is also taking a pacifier here and there which is so sweet to see.
On a side note we just feel so blessed to be able to spend Christmas with her!! A few months ago we could not even imagine coming out and through all that we have and God has carried us and her through it all. We still have a road ahead of us, but we know God will carry us through just as He has so far. God is so gracious. -M

Latest on Ryan

Ryan continues to do well as we work on weening her drips. She will be off of the Ketamine at the end of the day. The first trach change will be tomorrow. After that Michelle and I will be able to begin learning what we need to learn to get home. I think it's very realistic to say that we should be home sometime in January. Thanks again for all the prayers and support.

New Video

There is a new video of Ryan with her trach on YouTube. Take care, Jared

Tracheostomy went well

Ryan is now back in her room relaxing. Take care everyone, Jared

Special Thanks

Thanks goes out to the Texas gals who sent all the goodies! We were so happy to receive the package. Thanks Rhonda, Kathy, Tracy, and Betty. You women are awesome. I got my eye on the peanut butter fudge! God Bless, Jared and Michelle

Steadfast heart

Hi there all,

I read these two poems and I found them inspiring and thought I would share :)

"Give me, O Lord, A steadfast heart, Which no unworthy affection may drag downwards; Give me an unconquered heart, which no tribulation can wear out; Give me an upright heart, which no unworthy purpose may tempt aside. Bestow on me also, O Lord my God, understanding to know You, diligence to seek You, wisdom to find You, and faithfulness that may finally embrace You, through Jesus Christ our Lord."
-Thomas Aquinas

"Many a questioning, many a fear, Many a doubt hath its quieting here. Moment by moment, let down from heaven, Time, opportunity, guidance are given. Fear not tomorrows, child of the King- Trust them with Jesus. Do the next thing!"
-Elizabeth Elliot

Thanks for your continual prayers!! -m

Tracheostomy tentatively scheduled

Ryan has shown vast overall improvement in the last week. We have been able to decrease the swelling in her tissue and are now back to trachable settings on the ventilator. Her tracheostomy is scheduled for Wednesday morning at 8am. On another note, we met last week with a couple of the reps who are responsible for providing home nursing care. We were very impressed with them and we will begin interviewing possible candidates on Wednesday. Please pray for this process. It's a big deal because these nurses will be living with us at least one third of the time. Thanks as always for the abundance of prayers and support. Jared

Fun Facts

Hi there,
So, here are some fun facts about Ry...
1.) She LOVES her head rubbed!!
2.) She LOVES blankets or washcloths on her head
3.) She is most at peace when she is being talked to...especially sweet talk
4.) Her favotite book is Goodnight Moon
5.) She HATES dirty diapers!
6.) She Loves to be sang to and listening to music
7.) When I give her a bath and I am washing her leg she stretches out her legs for me
8.) She sucks on her tube all the time
9.) She loves to hold hands
10.) She loves having me talk to her super close to her face (even with stinky breathe :))
I thought it would be nice to share the sweet little details of Ryan along with all the updates we send out.
Thank you for all your prayers!
M

Perseverance

Ryan is slowly moving in the right direction. We hope to get her back to the point where she can get the trach. From a respiratory stand point, she is not quite there yet. Please pray that Michelle and I don't grow weary. I'm having one of those days where I'm just flat out frustrated with everything. Though this experience is very rewarding, at times it can completely exhaust you. And there are moments when you don't think you have the strength to keep going. The toll that this takes on you physically and emotionally simply can't be overstated. Please pray that God will continue to get us through this one day at a time. Jared

Tracheostomy moved back

Due to the set backs with Ryan's swelling and being forced to increase her vent settings, the tracheostomy has been moved back. Hope to get it done next week. She has been improving over the last few days. One day at a time. Thanks for all the prayers and encouraging comments. Jared

Psalm 16:8-9, 11

Ryan is a continual surprise. Today they threw some challenges at her and she rose to the occassion. I was so anxious this morning when they made thier plans for her today. I sat with my head in my hands and worried that this could set her back once again. She just has not been handling change well and I had hoped we could have a few days for her to settle before we start challenging her again. So, Jared and I prayed and put her back in God's hands because nothing escapes Him and His plan. God showed me that He is bigger than anyone's plans and my anxieties for nothing is impossible for Him! She took thier challenges and rose to meet them.
Psalm 16:8-9
"I keep the Lord always before me; because he is at my right hand, I shall not be shaken. Therefore my heart is glad, and my soul rejoices; my body also rests secure. You show me the path of life, In your presence there is fullness of joy; in your right hand are pleasures forevermore."
-Michelle

A new day

Hi there,

Michelle here. :) So, today has been a better day. We prayed that God would give us a sign last night which direction we need to support Ryan and it has been clear that she is a fighter and that we need to fight right alongside her still. She has dramatically turned around over the last 24hours and we praise God and thank you all for your prayers!! We are by no means out of the woods and she still needs to still overcome some milestones, but we are headed in a clear direction and we praise God!!!

I read this today and I found this encouraging...

The great thing about life being somewhat messy is that you are "held there by hope, knowing how God's creativity works, slowly, slowly, slowly, but always with surprise. Creation, creative work, never ends up the way we thought it would. It is always a surprise. Creative is by definition something new, and if we knew what the result was we might not be creative." Living the Message

I Corin. 13:12
"We do not yet see things clearly. We are squinting in a fog, peering through a mist. But it will not be long before the weather clears and the sun shines bright! We will see it all then, see it all as clearly as God sees us, knowing him directly just as he knows us."

Family Meeting

We had another Family/care team meeting earlier today. What we discussed is something every parent dreads. We talked about preparing ourselves for the real possibility of losing Ryan. We thought that when we repaired her heart that she would excel and improve to the point that we would get her home. Well things don't always work out the way you wish they would and Ryan is not getting better. Her heart and lungs are still very sick and with the chromosome abnormality that she has, its hard to predict how she will respond next. After the meeting Michelle and I left the room and prayed. This was such a precious time that helped us realign with God and each other. We have decided to continue to fight for her till the end and we are still praying for a miracle! I credit all of the amazing comments that have been sent to us that always seem to encourage us in our time of need. Michelle and I are going to pray with Ryan tonight and tell her that it's ok if she needs to let go. This will be very difficult for us but she needs to know that we will be ok. So I ask you all to please pray for this time that we spend together. Thanks again for all the prayers, Jared

Struggling

Hello all. Ryan has struggled off and on for the last week but has now become more serious. She is not urinating and has become very swollen. She also has extremely poor lung compliance. To me she looks as sick if not sicker than I have ever seen her. Pray for her to be healed but above all else please pray for God's will. Jared

Tracheostomy scheduled

The tracheostomy is scheduled for Monday at 7am. This will be the simplest and least invasive procedure that Ryan has had. Thanks for prayers, Jared