Please pray for Melanie

Please pray for Melanie and her family.  She is very, very sick and she and her family need our prayers.  Melanie is a friend of AJ's from our church.  She has suffered from a serious physical disability since birth but through it all she has loved Jesus with a sweet and gentle heart.  Right now she is in the PICU and and you can read about her journey here Melanie 

Barbara

I've been singing this song and praying for her this morning.  

I Know Whom I Have Believed

I know not why God's wondrous grace

to me He hath made known,

Nor why, unworthy, Christ in love redeemed me for His own.

I know not how this saving faith to me He did impart,

nor how believing in His Word wrought peace within my heart.

I know not how the Spirit moves, convincing men of sin,

Revealing Jesus thro' the Word, creating faith in Him.

I know not when my Lord may come, at night or noonday fair,

Nor if I'll walk the vale with Him, or meet Him in the air.

Chorus:

But 'I know whom I have believed, 

And am persuaded that He is able

To keep that which I've committed

Unto Him against that day.'

Happy Birthday Rachael!

This week was Rachel's birthday.  I really enjoyed thinking about her and I tried to spread the enjoyment to the whole week and not just March 2nd, the day of her birth.  Rachael was our firstborn and would be twenty six years old this week.  She died shortly before she was born as the result of a serious kidney disorder.  We learned earlier in her pregnancy that she would not live long past her birth.  I can now look back at her short life with pleasure and peace.  At the time she was born it seemed like I would never see the situation through the eyes of anything but pain.  Each day that has passed I have treasured the words of scripture that hold so true.  I can't wait to see her and have time with her again.

I Thessalonians 4:13-18 (New International Version 1984)

Brothers, we do not want you to be ignorant about those who fall asleep, or to grieve like the rest of men, who have not hope.  We believe that Jesus died and rose again and so we believe that God will bring with Jesus those who have fallen asleep in him.  According to the Lord's own word, we tell you that we who are still alive, who are left till the coming of the Lord, will certainly not precede those who have fallen asleep.  For the Lord himself will come down from heaven, with a loud command, with the voice of the archangel and with the trumpet call of God, and the dead in Christ will rise first.  After that we who are still alive and are left will be caught up together with them in the clouds to meet the Lord in the air.  And so we will be with the Lord forever.  Therefore encourage each other with these words.

What joy to look back on her life and into the future, "through the eyes of Jesus".

Be encouraged,

Barbara

He's Growing Up

Aj learned a new skill - crib jumping!  It's been easier to just keep him in a crib all this time as he has been connected to an airway monitor and a feeding pump - at least until - he learned to jump over the side while still connected to his pump.  I really don't want an emergency trip to repair a hole in his stomach or to have the tube replaced so it was time to find him a bed.

Some of you know that I am a Craigslist shopper.  We went in search of a bed and found a fire truck toddler bed.

I didn't even know they made cute beds like this.  Now to take down the zoo theme on the walls!  Anyone in need of a nursery zoo theme?

A special thanks to KJ who picked up the bed for us.   It gave us a good excuse to travel to the Twin Cities for a visit.  The girls, AJ and I made it a day trip and took KJ along to the Mall of America.  We had lots of fun as we spent most of the time on rides.  (For those of you that don't know me - I hate shopping more than anything).

I found AJ his summer shoes.  We knew that many kids with EB wear Crocs.  Since AJ's feet were getting too hot in slippers I ordered a pair online.  He loves them.  I did have to stretch them out some - I used a hair dryer to heat the material and then stretched it.  Considering he has his feet pretty heavily wrapped, I'm so glad they fit.

They look cuter on his feet than in this picture. He adjusted to them quickly but does seem to trip some so it will take some getting used to.  I don't think it's that they are too big but instead they seem to stick to the kitchen floor (yes, my floor is clean).

Thanks to all of those that called or emailed about RR.  We are working on finding a permanent placement for him. Right now a longer term hospital setting is being considered - just to get him better stabilized.  At this point we just keep moving forward, waiting for his care team to make a decision.

2 Peter 1:3 (New International Reader's Version)

God's power has given us everything we need to lead a godly life.  All of that has come to us because we know the One who chose us.  He chose us because of his own glory and goodness. 

Have a blessed week.  I'm hoping for Sunshine.

Barbara

The End with a New Beginning

I know I should be in bed but it's been an eventful day.  I feel like I just finished a very long book and I am ready to begin a new one tomorrow.  With that comes a sense of loss and hope for a new beginning.  Enough of my vague and probably rambling sentences - on to the details!


RR was hospitalized tonight.  Unfortunately not before the kids witnessed a violent end to the evening.  Thankfully everyone is ok physically but it could have ended differently. We knew this could happen. We knew that RR would be very difficult to stabilize after having to remove him from the medication that has reduced his violence and kept it at bay for the past five years.  


I can say with peace and a strong sense of conviction that this was the last time RR will live at home and be able to victimize his family members.  It's the last time the kids will watch the ugly events unfold and fear for their safety and ours.  It's been a lot of years and a lot of work but our part in "hands on parenting" of RR is coming to an end.  We will continue to be family and continue to love him but it won't look the same. It is with a sense of sadness for all of us and a sense of peace knowing that it's time to be done.  Done with the anger and the violence.  It's probably long past due but the time is right.  


We have many things to be thankful for tonight.  Things could have ended much more seriously.  I'm thankful for the Rochester police department that responded in the time they did, in the middle of a snow storm.  I'm thankful for Scott, who walked in the door at the last possible second as I don't think I could have held things off any longer.  I'm thankful for the 911 operator that stayed on the line for what seemed like an eternity.  I'm thankful that AJ was taking a nap and missed all the excitement.  I'm thankful for the fact that RR got a bed in the hospital unit as it was the last one available in a 75 mile radius. I'm thankful the kids are asleep knowing they are safe.  I'm thankful tomorrow we are able to spend the day together and work through the events of this day.  I'm thankful it's done, finished.  For this I am confident; We have loved RR well, we have parented RR well.  We have shown him Jesus.


There are many that have helped us over the years with RR. You know who you are. You have provided many roles; respite provider, personal care assistant, crisis worker and friend.  You helped and listened even when you may have thought we were crazy to continue.  I am thankful for all of you.  You were so important in helping RR and in helping our family.  We could have never done it without you.  I am so thankful for you and hope you know that what an important role you played.  It allowed RR to live for nine years with a family that loved him.  Some days I never thought we would make it that far but we did; together.    I hope you can know, with us, that the time has come for a different setting for RR. Not a different family as we will always be that, but a different environment, one that can provide the level of safety he requires.

Ecclesiastes 3:1-14 (Today’s New International Version, ©2005)

There is a time for everything, and a season for every activity under the heavens:

a time to be born and a time to die, 

a time to plant and a time to uproot,

a time to kill and a time to heal, 

a time to tear down and a time to build,

a time to weep and a time to laugh, 

a time to mourn and a time to dance, 

a time to scatter stones and a time to gather them, 

a time to embrace and a time to refrain, 

a time to search and a time to give up, 

a time to keep and a time to throw away, 

a time to tear and a time to mend, 

a time to be silent and a time to speak, 

a time to love and a time to hate, 

a time for war and a time for peace.

What do workers gain from their toil? I have seen the burden God has laid on the human race. He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end. I know that there is nothing better for people than to be happy and to do good while they live. That each of them may eat and drink, and find satisfaction in all their toil—this is the gift of God. I know that everything God does will endure forever; nothing can be added to it and nothing taken from it. God does it so that people will fear him.

I'm heading to bed with no regrets.  

Goodnight,

Barbara

Happy Valentines Day!

It's been a good day with all of the kids. RR was discharged from the hospital last Friday.  He was there twenty eight days.  It's been interesting as it's like having a different child at home.  Psych medication can change so much.  Right now he talks constantly and very fast.  He doesn't' really have a conversation with us; instead he sounds like he is announcing information - it's a start.  Time will tell if the new medication is a good match for him.

For those of you wondering; We found AJ does not like French fries.  We took him to Mickey D's and made a big deal of it - he tasted one and spit it out.  He didn't quit trying though.  He spied my apple pie and found he LOVES apple pie.  Now every time we run an errand he keeps asking for apple pie - Pretty please (Thanks KJ for teaching him that :)

Aj has had a hard time with gagging and vomiting since his procedure.  I am not really sure why but it most likely has something to do with the position of his GJ tube or his reverse motility.  His food keeps coming up into his stomach and out his mouth.  I'm trying to give it more time.  We see the pediatrician on Friday though I don't expect her to know a lot about it.  I'll call the GI doctor if it doesn't get better soon.  We are getting some food into him so I don't feel like it's an emergency.  The pain clinic called today and they wrote AJ a prescription for Ativan.  I don't have any immediate plans to use it but the next time his wounds are especially bad and he has a lot of anxiety before his bath, we are going to try it.

AJ took "Toy Story" Valentines to school today.  He had lots of fun and came home asking for more candy!  I guess he is making up for what he couldn't eat at Christmas.  He is still pretty careful and only eats small bites of things.  Scott bought me a bouquet of balloons and AJ was determined that they were for him.  He kept saying, "mine" and did not want me to touch them.

Here he is with MY balloons.

Happy Valentines Day!

I John 4:19 (New International Version)

We love because he first loved us.  

Barbara

So Thankful...

Psalm 69:30 (English Standard Version)

I will praise the name of God with a song;

I will magnify him with thanksgiving.

Our hearts are filled with Thanksgiving.  We are back home!  The procedure went  extremely well and we were allowed to leave the hospital (this does not happen very often - Mayo usually likes to keep us as long as possible).

(sorry the picture is not the greatest quality - the hospital gave it to him as a gift)

AJ's airway looked very good.  The largynamalacia is back (floppy larynx) but it is not serious enough to treat at this point.  If or when it becomes a problem he is a great candidate for another airway revision - he has already had one done and his doctor believed it would work again if necessary - great news - any way to avoid a tracheostomy I'll take.  

The interventional radiology doctor was so very pleased with AJ's dilatation.  He said AJ's esophagus went from having two hour glass like blockages to a nice open area.  He really enjoyed working with AJ and asked that we specifically request that he be involved in any future interventions.  Three of the physicians present had worked with AJ before.  It's so great to have a team that loves to work with AJ.

AJ did so great.  I have to credit the peace of God in his little life.  He went back to the operating room without a tear.  He laid down on the table while they prepped him, he let them place the mask on his face and went to sleep holding my hands.  Even his IV access was great.  It has been terrible in the past but they got it in without any difficulty.

AJ's most painful part was the intubation.  His mouth is filled with blood blisters from the damage.  While in the recovery room he asked me to take a needle and start breaking them.  Putting a needle in his mouth is not the highlight of my day but it brings him real quick relief.  He is not allowed anything to drink or eat until tomorrow and he is not very happy about that.  He is asking for McDonalds - probably because we told him they would fix his throat and that he would be able to eat a french fry - something he has never been able to do.

The procedure did bring out the need for additional OT services to keep his mouth nice and open.  It opens substantially less than it used to.  This will become a problem in the future as the smaller the opening; the harder it is to intubate him for any procedure.  The doctor felt he had strictures holding it closed.  I had noticed that to get a toothbrush in his mouth is difficult as he opens just wide enough to get a really small brush between his teeth.  

Thank you for all your prayers.  We are indeed blessed.

Barbara

Counting down the days

Thursday is the day for AJ's esophageal dilatation.  They will also take a good look at his airway. I am expecting good results since he has not been having any difficulties breathing.  Last week we met with the dermatologist.  She was concerned about his increasing wounds but was happy that we are making headway with the terrible itching.

Tomorrow we see the OT to look into suggestions for bathing him.  He is outgrowing his little tub and putting him in the bath and having to unwrap him there is really difficult.  He seems to manage to tear up his skin faster that we can get it to heal. We've been resorting to bathing on the kitchen counter.  It adds to the difficulty of the whole process but it saves our backs.  For you EB families that read this; I would love to hear more about what you have found that works well.

RR is still in the hospital so we have been busy running back and forth.  He really had a tough time getting off of some of his medications.  They have started a new mood stabilizer and he is starting to show signs of improvement. For those of you that have had experience with a manic phase of bi-polar; you know how tough it can get when it is out of control - he has had pretty classic symptoms.  He spent quite a few days thinking he was President Obama's cousin.  Then he crashed and slept for a long time. Yesterday he called and said it was "Jonah" I was talking to.  I hope he can find humor in this when it is over :) I don't know when he will be discharged.  He is not stable yet but things are moving in the right direction.

It is so quiet at our home.  My sister and her boys have moved on to their new home and we are really missing them. AJ cried this morning that his cousins were not here. He ran so much with them that his little feet blistered on the bottoms. This morning he alternated crying between his feet hurting and the boys being gone.  I told him we will have to visit them this spring (I'm sure he has no idea what that means but it got him to stop crying for a bit).

AJ will have to spend time playing with his penguins!

Thanks for remembering AJ in your prayers on Thursday.  I'm also praying that RR's hospital discharge and AJ's hospitalization don't conflict.   I'm looking forward to AJ being able to eat again.  I'll also admit that I am at a loss as to how to prepare for RR's return home.  We've had many rocky roads with RR in the past and new medications will change many of the dynamics of his behavior.

I am at peace.  God has been so good to us and his grace has carried us through many good and difficult times.  I know it will be there in the future too;  Future grace!

Oh how I look forward to that day of redemption.  Don't lose sight of what is ahead!

Romans 8:22-23 (New International Reader's Version)

We know that all that God created has been groaning.  

It is in pain as if it were giving birth to a child.  

The created world continues to groan even now.  

And that's not all.  

We have the Holy Spirit as the promise of future blessing. 

 But we also groan inside ourselves

 as we look forward to the time when 

God will adopt us as full members of his family.  

Then he will give us everything he has for us. 

 He will raise our bodies and give glory to them.

I'll post again after AJ's procedure.

Barbara