Friday, December 7, 2007

We're home!

We came home from the hospital today. It felt so good to leave the hospital with our boy, and he got to breathe some fresh air for the first time in over a week. The physical therapists were impressed with his strength and movement so the doctor said it was okay to leave. We still need to work with him on walking by himself, sitting up more, feeding himself, etc. I am confident he can do all these things but right now it is just more comfortable to lie down and let us do everything for him.
We also met with our neuro-oncologist again today and she outlined several options we have for treatment, all include radiation, but some add in chemotherapy drugs or other drugs. We still need to decide the best option after we read up and investigate all the options. This will probably start in 3 weeks, as soon as he has recovered from surgery.
It is really odd being home b/c part of me feels like, "Aaah, back to normal..." but then the reality of our new normal sets in and the comfort starts to fade. It is a little similar to coming home from the hospital with a newborn...you are happy and comforted to be home, but terrified at what to do with this baby who needs your full attention and care all the time. And life is never the same after that...
On a happy note, Joseph came home to a "big boy" room! Our dear friends the Slotkins and my mom set up a big boy bed (he was in a toddler bed) with the cars movie theme and some new cars pillows, etc. It looks amazing. Thanks, Mom and Beth and BJ.
Please pray that God gives us the wisdom to know which treatment option is best for Joseph. It is really terrifying to think we are entrusted with this huge decision so we would love if God would make that clear to us. Another prayer request is that we would all transition back to home life. Joseph has gotten used to us sleeping in the room with him at night, getting him goodies at all hours, feeding him, etc. It will be a slow process (but he is asleep right now in his bed by himself!) of weaning him but we need a lot of strength and patience and firmness b/c we do want him to be his independent 3 yr. old self again soon. We continue to be encouraged by all your comments, cards, calls, emails, etc. We are so thankful for such amazing friends and family. We love you all!

45 comments:

So Blessed said...

Praise God from whom all blessings flow...prayers will continue for Joseph and your family.

Sara B said...

Oh Al and Gilla--
it is so sweet to hear that you are able to enjoy some "normalcy." I am praying for you all in your huge decision.

No guilt in life, no fear in death
This is the power of Christ in me
From life’s first cry to final breath
Jesus commands my destiny
No power of hell, no scheme of man
Can ever pluck me from His hand
‘til He returns or calls me home
Here in the power of Christ I’ll stand


I love yall and am praying for a precious few weeks as a family in your own home.

sara b

Anonymous said...

Praise the Lord you are home!! I also have a 3 year old and can not imagine the feelings/burdens you have on you right now. Hearing about Joseph puts my life in to perspective. I can look at my children knowing every day is a blessing, even those days when everything is going wrong. Thank you for your openness and ability to allow us to walk and pray through this with you. We will be praying for the decisions you will be making and that God would give you wisdom through the council you seek. I am praying that there would be no confusion and that while you are home you will be able to rest and connect well with your sweet family!! ALL GLORY TO GOD!!! (im a friend of courtney nelms ashburn and newly friends with ashley smith)

Brea said...

Wow, what great news! Praise God for that! You guys are amazing, and I am praying constantly for God to strengthen you and for Joseph's complete healing.

Anonymous said...

I am a friend of Allie tanner's. i am praying for Joseph. with love - Mary Catherine

Lynn T said...

Dearest Allen, Gill, Joe P. and Holly,

I am so glad you are home and all together again. I can just picture Joseph in his big boy bed. I'm so proud of Joseph, sleeping in there on his own. Please tell him Aunt Lynn is so proud of him. I am praying for peace, wisdom and rest for you all. It truly is so good to hear you are all at home.

Love,

Lynn

Sam said...

Gill and Al,
I am so glad ya'll are back home. I look forward to seeing Joseph's new "Cars" bed. Gill, I find it hard to believe that it could be more hip than our old Ronald McDonald comforter. We'll just wait and see! Let Joseph know that as soon as he can walk by himself that I will be available for a good chase/marathon around the house.

I miss you and will continue to be praying for all of you.

-Sambo

paige said...

Gillian, this is great news. We will keep praying for rest and healing as well as the wisdom to make such important treatment decisions. I would have loved to have seen his face when he saw his big boy bed and all his new Cars loot! I am so glad you guys are back home.

paige

Jeanne said...

Wonderful news! So thankful that you're home and Joseph can begin to feel himself again in his own setting. Praying for good rest for you all and certainly for your decisions ahead. Blessings and peace! Jeanne

Sara said...

Yeah! I'm so glad to hear that you all are back home! We will keep praying- for a quick recovery for Joseph from his surgery and for wisdom for both of you. We are here for whatever you need...

sara

Jiggs said...

Thanks, praise, and glory be to God for Joseph's continuing healing at His hand!

Please try to trust that God has already given you the power and the tools and the knowledge to make - correctly - the decisions you have to make just now and continue to trust that He will continue to equip you with all that you could possibly need to make - correctly - the next decision ... and the next decision ... and the next as the time and the need to make those decisions comes along.

With continued love and prayers from Kansas City!

Anonymous said...

How great that you are home. And how wonderful that you are posting & updating so that we may know how to pray specifically for Joseph & for you two & your family as well!!! God bless you all with the peace of the great Shepherd of the Sheep!

suzanne morris said...

Dearest Gill,

What a pleasure to be able to spend a few minutes with you and Joseph today!

I am hopeful and praying that now that Joseph is back in a familiar environment, he will begin to feel/act more like himself again. I imagine that this past week when he would say that he wanted to go home, he probably meant more than just back to the house....he probably meant back to the life before big head boo-boos.

I remember when he was little and just walking whenever someone would come to the door, he would run and push the curtains in the window beside the door away so he could see who was there. I hope he'll be doing that again soon.

I am also praying that during the break between the shock of this past week and the treatment ahead, your family will be able to have a sweet Christmas...that there will be times when thoughts of the uncertain future fade and you find yourself smiling, enjoying one another.

We love you and Allen and we love those precious kids of yours!

Suzanne for all the Morris family

maija said...

My heart has been so heavy since your last post. I have many family, friends, and friends of friends praying for Joseph and your family.
I pray the Lord will carry you through this. I know in times of trial it is easy to feel abondoned or angry(and that is ok); but I pray that you, Allen, Joseph and Holly will feel the Lord's love and Holy Spirit wrapped around you.
I know that you will be given sufficient wisdom to make the right treatment decisions and enough grace to live each day. What is that verse? "do not worry about tomorrow, for each day has enough trouble of its own". I hope in the midst of this you can take lots of time to just "worry" about enjoying
one another and celebrating the holidays. -Maija

susan, brian and family said...

Delighted to hear the good news that you are all home together. Sure you now all want a little peace and quiet to enjoy one another. You are in our thoughts constantly.

erin and dave said...

we are so thankful to hear that you are all home together again! we will be praying for you as you face these upcoming decisions. we pray that God will make what is best for joseph very clear to you both. we will also pray that you all get better rest now that you are back in your own beds.
thinking of you all the time,
erin and dave

Vann and Norma said...

We are so thankful that you are home. Our prayers continue night and day for all of you. May Joseph heal, gain strength, and have joy daily. We know God is going to direct you in your decisions. We love you dearly.
love, vann and norma

Christy said...

Yea! Imagining you guys all in your own beds or curled up on the couch together is SO much better than picturing you all cramped in a hospital room with beeping machines. And I'm so glad Jofus is pleased with his exciting big boy room. I want to see a picture of those Ronald McDonald comforters ...

tracey said...

We're always thinking about Joseph and your family these days. I talked to Beth at length last night and she told me that Joe also had a really nice visit with Logan - I know he loves all his buddies and I look forward to seeing them all "being boys" together very soon. I'm so glad the room worked out well - I know he'll love it and the other kiddos will want a room just like it! I pray Joseph gets stronger each day. You guys are wonderful parents.
Love,
Tracey

trmills said...

We were overjoyed to find your hopeful post- home again! Praying for joy and peace and routine and wisdom as you walk forward- may God be very, very close to all of you, dear friends. We feel close to you as we think, pray and hope for you all the time.

Tim, Rhianna, Emmy and Asa

Charlie Babcock said...

Alan,
I've been praying for you through this process and will continue to do so. Thank you for allowing your family to commune with all of us through this venue.
Charlie Babcock

Anonymous said...

Mimi and Big Daddy are so very thankful to God that Joe P was strong enough to go home where he will be more comfortable and where you all can be together again. Allen said on the phone that Holly was so excited she just kept running around the house. It made us laugh, we can picture her doing it! Gillian, thank you for sharing your heart in your update and letting us in all the different emotions you are feeling. You are an amazing mother, Joseph and Holly are so blessed. We will continue to trust in the hope of Christ. We will be praying for wisdom and direction.
Psalm 142: I cry aloud to the Lord; I lift up my voice to the Lord for mercy. I pour out my complaint before him; before him I tell my trouble. When my spirit grows faint within me, it is you who know my way. I cry to you, O Lord; I say, "You are my refuge, my portion in the land of the living." Listen to my cry, for I am in desperate need.
"Big hug and kiss", Mimi

scott cunningham said...

Gil, my heart is breaking reading your post. I was wondering if you had any ideas of the kinds of gifts that Joseph would enjoy for Christmas? Maybe even if you registered some stuff for him at an online toy store? I wanted to buy him a Nintendo Wii, as I figure it's never too soon to learn to play a Wii (Paige won't let me have one), but then I came to my senses. What kinds of toys would he like for Christmas? Or are you about to be swamped with toys for him, and so would rather not?

Mikey said...

Welcome back home to all of you. Egleston is a lovely place, but I wouldn't want to live there. We continue to keep you in our thoughts and prayers as always. Gabi doesn't really know who Joseph is, but we're making sure he has a place in her bedtime prayers. God bless you all.

--Mikey, Melissa, Gabi, and Bella

Anonymous said...

We are so glad to hear that you are back home. We have not met, but we feel we know you. We have been following your journey and are awed by your strength. We will continue to pray for your family - that Joseph will be healed, that you may have clarity as you move forward, and that you may feel peace and joy in these next few weeks.

You are in our hearts,
Jen and Rob
(Friends of Tracey and Chad)

Mary Vagnoni said...

Great news that you are back home.



"Theres no place like home" great news. Everyone has been singing your praises Gillian, your Daddy says you are his "rock".Praying for continued strength and wisdom for all your family.
love
Aunty Mary

Anonymous said...

Someone that knows you informed me about Joseph, so I read your blog. I am astounded at how God has provided in your prayer requests everytime, even surpassing or rather surprising you with new recoveries on Joseph.

And how brave you are to still, despite what Joseph need to face, still want the best for him, by weaning him of by sleeping in his own bed on his own, wisdom has been given to you!

So many big things has come from this, what a privelage it is to be Gods children and to be able to lie in his arms and trust Him for everything.
Gen.1 "God created the heavens and the earth"
Everything belongs to Him, all the riches, all the money, all the animals, all companies... He lent it to us...and make us think that it is our own... In this I believe that God our Father has, is and will provide in every need you ask Him to.

Groete:
South Africa

Craig and Gwen said...

Hurrah - home at last!!

Hopeful and in prayer!
Gwen

Gwen Smith said...

As I have read the daily reports and many of the comments left by the praying community, I see people who are taking our calling to pray for and love one another seriously. I was reminded of Moses in Exodus 17 who, battle weary, had to depend on Aaron and Hur to lift his arms for him as he held the staff of God. What a joy to see all the Aarons and Hurs gathering around your sweet family when you are so weary. May we all continue to do so.

Loving you and praying for you from Franklin - Gwen Smith

annette pacetti said...

Gillian and Allen,

So, glad you're home. Even in the 21st century the old addage remains true: The hospital is no place to get any rest.

I keep remembering playing in the dirt pile with Joseph, Holly and Bella Claire this summer. When we took them in for a bath he had at least a cup of dirt in his diaper!!! But boy was he having fun. (Who ended up having to clean that bathtub anyway?!?)

There's no question that you will be searching for a new "normal" around your home. But I will pray that you are able to find that rythm and that Joseph will recoup his "three year-oldness" quickly.
Am also praying that even as this crisis calls for so much attention on Joseph that God would strengthen your "one-ness", that he would give you distinct times to be just "Gillian and Allen".

Crying out to our "Abba, Father" with you.
Annette

Wrights said...

We woke up praying for you and will continue to pray.
Nathaniel and Rebekah, Anna Walton and Olivia

Tammy Beaver said...

I love to sleep in on Saturday mornings whenever I can, but the Lord stirred me early this morning with you all on my mind, so instead I was up praying!! I prayed that Joseph slept peacefully in his new "big boy bed." and that the whole family rested well. I hope that you all enjoy a little bit of normalcy (is that a word?) on your first day at home. I pray that your minds will find rest and not be overwhelmed with the decisions at hand. May the Lord be your strenth and your refuge as you face each new day.

We're longing to give you all hugs and help in any way. We love you.

Tammy, for the Beavers

Heinzfeet said...

We are so glad to hear you're home and resting. We miss you guys! Let us know if there is ANYTHING we can do! Love you!
Ash

Laurie said...

I am so glad to know you were able to take Joseph home and get back into being a family. Jesus is his home care nurse, watching over his every movement. He will protect him and you. He will guide every decision you will be making on Josephs behalf, and He will guide you loud and clear in your hearts. Praying here in California for every need to be met and for peace and comfort over your entire family during this frightening time for you. He is with you and will never leave your side.

Love, Laurie in Ca.

sj said...

I think Allen might like a Wii, Joesph probably couldn't figure out how to play it YET:)
of course Gill might not allow it either:)
so glad you're home..and that Joseph is in a big boy bed.
and that he slept.
see you soon (whenever you need me)
sj

kate said...

We're praying for you daily.

- the eighth graders at ICS

Lizzi said...

Yay, home!

I'm sure the "new normal" will be an adjustment...God will give you the strength and wisdom you need for for today; "tomorrow will worry about itself" (Mt. 6:34).

Praying that Joseph would regain strength and return to his usual independence, and that you would have wisdom to choose a treatment plan for him.

We love you guys!
-Tony & Lizzi

Brooke said...

So glad that you are home. Praying for continued recovery for Joseph, your decisions, and balance at home. Know that you're not alone.

With love and Prayers,
The Adams

Boothe Farley said...

what wonderful news! we are so thankful that you guys have made it home and can adjust to that "new normal" you mentioned. we are praying for the adjustment to go smoothly, for you all to rest well, and most definitely for the Lord to guide and direct you in your decision-making regarding treatment for joseph. i can't imagine how tough that must be, but my prayer is that the best option will be absolutely clear to you - that you will feel most at peace and sure of that one over all the others.

blessings-
conor, boothe and sellers

Anonymous said...

Allen and Gillian,

I am so glad that you guys are home. I also want you to know that the entire BA family is praying for your family. Everyday we pray for you in our Christian Dynamics classes and we will pray for your decision on the best treatment for Joseph. I pray that you will enjoy a blessed Advent and the coming of the Savior Jesus will be even sweeter for you this year.

Love,

Brad and Stacey

Jody (atlanta) said...

So glad you home. We cannot wait to see Joseph's new bed. We LOVED having Holly over and Abigail keeps asking about wagon rides and making messes with Joseph so when ready for visitors we all yours!!! We will continue to pray for strength and guidance in making the decisions for his care going forward. I know long haul ahead of you all and we are constantly praying for your family. We are here for you all always.....lean on us as much as you want. Love, Jody, Abby, Molly, Rob!

Anonymous said...

there is nothing like your own bed, and own pillow, and own room to make you feel better. Praise be that you all are where you are most comfortable. We will continue to pray diligently, please continue to keep the body posted on what we can be praying for specifically.
love
Emily Miller

Audrey said...

wow, you word everything so well. i just feel like i'm right there with you all and i don't even really know you all. praying!

Anonymous said...

Your new normal is in one big way the same as your old normal...you are still in the hands of a loving God! We will continue to pray for Joseph and your family as you enter the new normal, for wisdom and peace and strength.

Anonymous said...

Jillian, It's been a long time (formerly Megan Bennett) but I wanted to send some support your way. I have spoken to Ashley and she has been keeping me updated on Joseph. Just about everyone I know is lifting you all up in prayer.
Your faith is a testament to God's provision and His love for Joseph. I know He is with your family. God Bless you and Joseph and I will be continuing to join you in prayer and hope.