There are so many things that I could say about this week - from the highs to the lows. This week looked a lot like last. One thing I can say with confidence? God continues to give us strength.
Strength for today.
Strength for tomorrow.
We could not walk this journey without Him!
I have found new meaning in the words of Nehemiah 8:10
"And do not be grieved, for the joy of the Lord is your strength."The JOY of the LORD is my strength!
No matter how many difficult moments there are in a week, God always chooses to give us moments of JOY - moments we can cherish. These moments are ones that could easily pass us by if we were to wallow in our grief, but God has graciously shown us how to embrace them instead. And that is how He gives us strength to get through each day! In the hardest of moments I cling to the good - I remember the joyous moments and remind myself that there will be more. God promises more!
And the ransomed of the Lord shall return and come to Zion with singing; everlasting joy shall be upon their heads; they shall obtain gladness and joy, and sorrow and sighing shall flee away.I don't have to see the fulfillment of my desire of having Samuel healed on earth in order to experience the joy that God promises. But at the same time, we will continue to pray for miracles, because we know that God IS ABLE!
So today I hope to bring a little joy into each of your lives by showing pictures of a few of Samuel's favorite things!
|Being cute! (he can't help this one)|
|Being in his Rock 'n Play!|
|Therapy time with mommy and daddy!|
|Making faces at dad!|
|Being irresistibly precious!|
|Nuzzles with mom!|
|Trying new things!|
|His lion-flower rattle!|
|Being dressed in clothes!|
|Staring at his flying friends!|
|No, seriously. He would stare at them ALL day if we let him.|
|Being surrounded by ALL his animal friends!|
|Spending the evenings with Mommy and Daddy!|
These are just a few of Samuel's favorite things! He is definitely getting to a point where he lets us know what he likes and what he doesn't like!
Samuel had a Bronchoscopy done on Friday, which showed that he has moderate Tracheomalacia, meaning that his airway partially collapses when he is upset. This could explain the look of panic he has been getting when he gets upset, and why it has been taking him so long to calm down. It also showed that he has some extra room, so he could probably benefit from a longer trach. It could take up to 2 weeks to get the custom size that he needs, so until then we are waiting while we try to keep Samuel as comfortable as possible. We are praying that the custom trach will keep his episodes from happening!
So we have at least 2 extra weeks here in Delaware. In those 2 weeks, the doctors are also going to continue monitoring Samuel's heart to see if the coarctation of his aorta is getting any worse. Ideally, if the aorta is going to require surgery to remove scar tissue, they would like to do it at the same time that they remove his PA bands - and they want to push that surgery off as long as possible. We are praying that they will be able to get a better idea of timing in these next 2 weeks so that they will have wisdom to know whether or not it is best for us to head back to Arkansas before Samuel's next heart surgery.
We are confident that God will provide wisdom through some avenue, as He has so faithfully done with every decision on this journey!
In the meantime we sit back and laugh, because every time the doctors mention "home" Samuel has another surprise up his sleeve!
But really we know that this is all from God :)
As we always say...
This is His story, and it is ALL for His glory!