Pomp and Circumstance... (5/26)

First, we would like to acknowledge the fact that it has been way to long since we have updated, and we are very sorry for that, and we thank all of you who have continued to pray for Thatcher and his healing and have prayed for us and our family, we really appreciate it.  The encouragement that we have continued to receive from all of you has come at the perfect time more than once.  On days where we felt defeated and beaten up we would receive a picture of a daughter's prayer request for healing and just remind us of the faith we are to have in our God.  Or we would receive a text message or a facebook message that was exactly the scripture we needed to hear, or exactly the encouragement we needed that day, and always reminding us that we are not alone in this.  So thank you all for allowing God to use you to encourage us on our journey.

Today we find ourselves in circumstances that we never thought we would be in, we never thought we'd be here years ago, and we never thought we would be here a week ago.  Our circumstances seem to change daily, today we are looking at Thatcher and he is resting peacefully on his bed, struggling to breathe here and there, but responding well when we shift his position or stimulate him to breathe again.  Last night we found ourselves terrified every time he seized, because there was a good chance that his entire body would go rigid, every muscle flexed and tensed and his airway would clamp down.  He would turn blue and not respond to any amount of stimulation and he would need to be bagged to be brought out of the episode.  That happened 7 times in a 24 hour period.  A couple days prior we were watching helplessly as Thatcher had over 70 seizures in a 12 hour period that would cause him to stop breathing, and we couldn't do anything until the seizures were over and then we could help him breathe.  Prior to that we were praying to have a tube removed.  Prior to that we were praying for reflux to stop, prior to that we were praying for a safe delivery.  Our prayers have changed with each circumstance we find ourselves in, and that seems fitting, but we have to acknowledge that our God never changes.  Thank you, God that you never change.  Unfortunately, with the ever shifting circumstances we find ourselves thinking about the future, wondering what it's going to look like for Thatcher, for our family, when will we be going home, how will we be going home, and with these questions came fear and uncertainty.  The future is not ours to hold, it is in God's hands.  We are here, now, we live in this moment, the furthest our interaction with the future goes is deciding to let God handle it, to follow where He leads.  Fear and uncertainty are not from God, the peace that transcends understanding does not include fear and uncertainty, these feelings are a lie that have shaken our confidence in God's will, and in what the future holds.  Our confidence is not in the idea that Thatcher will be completely healed because God is able to do so, our confidence is not in our desire or our wish, or even our prayers.  Our confidence is that God is in control, and that God never changes.  This is the same God that causes all things to work for the good of those who love Him.  This is the same God who is victorious over death and temptation.  This is the same God who created the heavens and the earth.  This is the same God that every good and perfect gift is from.  God is good and that will never change.

God help us to be thankful for each moment, for the mercies of each new day, help us to rejoice and be glad for today and not worry about tomorrow because tomorrow is in your hands, help us to be thankful for each breath, help us to rely on You for each breath.  Lord, thank you for where we find ourselves today because You have brought us exactly here, and You will not leave or forsake us, You will lead us to Your glory and to our good.  Help us to trust you, and help our unbelief.  When Thatcher seizes, or he stops breathing, let us rely on you, do not let us become fearful for You are in control.  God, we humbly ask for Thatcher's healing.  That you would cause the seizures to cease, and that you would allow him to breathe with ease, that You would simply hold him and raise him up.  We proclaim Your praise, Your goodness, Your faithfulness, and Your love for us, God thank You for who You are.  We love You, Lord, we thank you, and we praise you.  Would you be lifted high, and Your name praised throughout the earth.  Father, above all, would Your will be done on earth as it is in heaven.

Our 2 Month Birthday... (5/11)

Well, Thatcher turned 2 months yesterday, and he had a really good birthday, atleast in the end.  First of all, thank you all for praying, God answers prayer.  We have seen that time and time again on this journey, and it's pretty rediculous for us to ever think otherwise, or that He is not in control, or that He doesn't hear us given where we've come from and been through.  Thatcher got out of surgery on Monday, and we were told everything went swimmingly.  There were no complications, no issues, he handled anesthesia well, very straight forward.  Well, come friday we are still on the ventilator and his belly is leaking stomach contents around the g-tube.  By friday afternoon he was gagging constantly due to his ventilator tube, and his gagging had caused the leaking to turn into more of a consistent dripping.  The site grew very red and irritated, until finally the dripping turned into more of a pouring of stomach fluid.  Thus irritating his skin more, causing him to squirm, causing the tube in his throat to move slightly, causing irritation in his throat (reminding him a tube was there), causing him to gag and start the whole process over again.  It was a terrible cycle to watch, and made even worse by the fact that we couldn't really do anything to step in and help so we just had to watch and pray.  Well, Thatcher realized that that was all he could do to...

"God, please let them take this tube out... I really don't like it, and I know you can help.  You helped before, and You can do it again.  Amen."

Anyways, he threw praying into the mix and when he was calm in between these cycles he would pray.  So what can you do as parents but join him?  So we prayed, we prayed that the doctors would take the tube out, that he would stop gagging once it was removed, that his stomach would stop leaking and would heal quickly.  We prayed for strong breathing, we prayed for healing, and we prayed for God's will to be done.  Around 10 or so, a member of the surgery team came by to look at the leakage and decided that he should be taken off of feeds and his stomach vented to relieve presure and hopefully ease the leakage.  He even considered taking him off of feeds and putting him on an IV (well, he would have had to have the IV in his head, and that's the only place we can hold him to calm him down from his seizures, so we prayed that wouldn't happen).  It did help with his gagging and the leakage to stop the feeds and vent his stomach and then, last night around 11:30 Thatcher was finally taken off of the vent!  He took a second to realize what the change meant for him, that he had to breathe on his own, and he desatted twice right away, but since then he has been doing great with very sporadic yet manageable desats.  He has restarted his feeds and his G-tube looks much better.  God has answered our prayers, and He is absolutely in control.  Join us in praising the Father for his goodness!

Speaking of goodness, some of yall have been asking about our friends we asked yall to pray for.  Well, the last we heard is that the surgery was a huge success.  That Addie started producing urine while she was still in the operating room, that she was off of the vent after 1 day when they expected her to be on for 4 days, and momma is doing well too, dealing with some pain and nausea, but she is in good spirits and praising God for where they are in their journey.  Thank you all for praying with us for them.

Again, we proclaim it, we believe it, God answers prayer.  Prayer is powerful and effective.

Father, thank you for where we are today.  Two months in, Lord and you have been with us every step of the way.  Help us to remember where we've come from, what obstacles and mountains you've already carried us through, we don't want to take your mercies for granted, Lord.  Thank you.  Thank you for the answered prayers, thank you for the "little" miracles, thank you for the reminders that you are with us and you are for us, that you are with Thatcher and holding his right hand.  Thank you that we are back on nasal canula, thank you that his G-Tube seems to be working and he seems less irritated, thank you for answering our prayers.  God we pray that you would stay present, we need your presence, we desire your presence, thank you for your peace that your presence provides, thank you for the confidence we have in You Lord, that you will never leave nor forsake us.  You are good.  You are so good.  You hear us! You provide for us!  You are here for us!  God would you be glorified through Thatcher, through us, through our journey.  Be lifted high in all the earth.  Lord, we lift Thatcher up to You, we ask for healing, complete healing.  Lord would you remove the hindrance in his brain and allow it to grow and develop, would you cast out the seizures that torment him, allow his windpipe to strengthen and grow, and help his stomach to handle eating with ease, Lord.  We trust you, God.  We trust that you are healing him, we know that you are able, and we believe that you will and that you are, thank you.  Help us to rest in your will, and in your presence, knowing that it is good and perfect, knowing that you will hold us up, we can have full confidence in that truth.  God be praised.  To you be all the glory and honor and praise, to you who is able to do abundantly more than we can ask or imagine, Lord.  We are asking to be amazed... and You never fail to do so.  Thank you for who you are, thank you for what you are doing.  We love you, we praise you, and we trust you.  It is in the powerful name of Jesus that we pray.
-Amen

G Tube Quick Update...(5/7)

Thank you all for your prayers.  God is good, and has brought Thatcher through the surgery successfully.  We are resting now, and will begin to ween him off the ventilator tomorrow most likely, and will probably start to get his feeds going.  We will post more about our adventures in the OR at a later time, but for now, please focus your attention and your thoughts, your hearts and minds on God, and ask Him for his mercy, his provision, grace, lovingkindness, wisdom, guidance, healing, and abundant blessing over the Graham family.  Stephanie and Addie will be undergoing major surgery tomorrow morning in which Addie will be getting a new kidney from momma.  We have seen prayer move mountains in our journey, and I know that this family has seen the power of prayer first hand as well.  Prayer is a powerful tool as we approach the God of salvation, the God of creation, and the God of our hope, joy, peace and comfort.  Please pray for this entire family (Steph, Al, Addie, Max, and their extended families as well, as this is a huge step in their journey)  Many of you may know them and their story already, but some of you may not, but these are friends of ours who have supported us and prayed for us and with us, and we want to lift them to the Father just as they have for us.  Please join us in praying for them.

http://www.maxandaddison.blogspot.com/

Preparation...(5/6)

From now until 10:30 am tomorrow when thatcher is supposed to be out of surgery we are asking you, our friends and brothers and sisters in Christ Jesus out Lord and Savior, to join us in a time of prayer and fasting. We are wanting to storm the gates of Heaven beseeching God for His presence and His healing hand during surgery. You see, this procedure (g tube with fundofication) is very common, but Thatcher is not. Due to his severe brain atrophy, he really struggles with the ability to calm his body down.  It took him 7 hours for his vital signs to calm down after getting a blood draw, and today was the first day his heart rate was down after his X-ray on Monday... 6 days later! It terrifies me to think of how he is going to respond to an actual surgery. Also, he is already on an amount of phenibarbital that suppresses his respiratory drive, but is needed to semi-control his seizures. Due to surgery being such a stressful event he will have an elevated amount of seizures to pull through as well as plenty of anesthesia and pain meds that knock out any remainder of a respiratory drive he might have and will have to breathe off a ventilator again. But we couldn't say no to something simply out of fear of how he might respond when it has the potential of vastly improving his quality of life. Please join us over the next 24 hours as we humbly fall on our faces before the Great I Am and ask for His protection for Thatcher's physical body but also for his fragile mind. For Him to allow his magnificent strength to pulse through Thatcher during the surgery and the recovery period. Pray He rains down His peace that surpasses understanding over and into Thatcher so he can simply rest and feel his Heavenly Father's arms wrapped around him. Protection, strength, and peace; that is what we are humbly coming to our Abba asking for through prayer and fasting. Would you, the body of Christ, consider joining us?

G-Tube it is... (5/5)

We will be going forward with the operation on Monday first thing in the morning.  Thatcher will be getting a button g-tube and a fundoplication.  Outside of any emergency surgeries that our surgeon may have to go to, this should all begin at 7:30 for Thatcher.  The surgery itself should then begin around 8 or so, and last about an hour and a half, and we should be back in our pod by 10am.  Please pray with us that God would be glorified, that Thatcher would be provided with strength and comfort through all of the pre-ops tomorrow, and the surgery, and the recovery process.  Please lift Thatcher up to our Father for healing and protection.  Lift up the surgeons, anesthesiologists, transport nurses, and everyone involved in his care through out this process for wisdom and compassion.  Thank you everyone for your continued prayer and support.  Now to Him who is able...

G Tube?... (5/2)

We've reached a crossroads of sorts.  We had a meeting with a surgeon today about a possible G-Tube and Fundo surgery.  The G-tube is a tube that would be inserted in Thatcher's stomach directly into his stomach.  This would replace his feeding tube that goes in his mouth, down his esophagus and into his stomach.  The Fundo part of the surgery is to help his reflux which we've seen, and has been confirmed through tests.  The Fundo is basically a string that ties around his esophagus at the stomach to basically stop the reflux from happening.  The surgeon came in talking about having the surgery this friday and had papers ready to sign and everything... at this point we are not ready to commit to that, and we seem to be like a wave tossed back and forth by the wind because we are able to convince ourselves either way of whether to do the surgery or not.  On the one hand we have seen a correlation between his reflux and his blue spells, he typically has more spells while he is eating.  The tests confirmed that he refluxes almost immediately when feeding, and when he was not eating before the bronch procedure he did not have a single episode.  On the other hand, the surgery poses huge risks, how much will this really help him?  His issue of his airway will still remain which is really the more severe issue in terms of his blue spells.  We are doing our best to seek the Lord's will to ensure that we remian in step with Him and we act according to His will for Thatcher, but we need discernment and wisdom as this is a huge decision for Thatcher.  This surgery would require for Thatcher to be intubated again, and would require even more anesthetics and pain meds than the Bronch procedure.  It is a huge concern of how he will handle coming out of the more invasive, painful procudure.  How he will handle being intubated again (this is a HUGE concern), and how he will handle the anethesia.  He recovers from things MUCH more slowly than the typical infant so the fear is that he may not regain his respiratory drive.  Please lift Thatcher up in prayer for continued healing, and for God to be glorified in and through Thatcher's life.  Also, please pray for discernment and wisdom, and a peace about any decision in this regard, confidence that we are acting within the Lord's will.  Please pray that God would be an ever present pillar of smoke or pillar of fire so that we can know exactly where to step next, a visible direction of where to go.  Thank you all for praying with us on this journey.  To God be the glory.