I am a mom of a cutie pie (very biased). And I wanted to share my experiences with others (including my cuties grandparents, great-grandparents, numerous uncles and other relatives). I love being a mom and can't imagine doing anything else.Day +77
today has been a rough day. The PTLD causes her lymph nodes to swell and so it looks like she doesn't have a neck. Her little ears are folded up because of how huge her lymph nodes are. You can feel them and even see some of them. She has had fevers up to 102 on and off all day. She has throw up quite a few times tonight and is just a sad little baby. It is hard to watch her like this. it is even harder to feel helpless.
She will get her second dose of the rituximab on monday and the hope is that it will start maing the lymph nodes go down. She got a second chest x-ray in two days today. Nothing is wrong with her lungs so the breathing problems are all because of the swollen lymph nodes invading her air way. Pray for some relief. She is up to 3/4 liter of Oxygen by nose canula. this morning she was only at 1/4th so obviously things have gotten bigger and worse throughout the day.
posted by Alivia's Momma @ 9:54 PM
33 Comments:
keeping all of you in our daily thoughts and prayers
deb b and family
I think about you so often and I want you to know prayers are being offered.
I pray you feel comfort soon.
God Love You
Phyllis
Praying that God will give you encouragement, strength, hope and peace during this difficult time. I and thankful that the doctors are so on top of things and so quick to determine how to treat each new event in Livi's life. I also pray that God will use all these medications and the TLC that you give her to bring healing and wholeness to Alivia once again.
God Bless
Claudia
Continuing to pray for your sweet baby girl. I am so sorry to hear how she is suffering with this newest development.Praying for a miracle for your little one and for God's grace to carry the rest of you!
Oh my dear Emily, that's all I can say right now. But I can continue to pray for comfort to come to sweet Alivia as soon as possible, and to you as you feel so helpless to ease her pain and discomfort. You are surrounded by love and prayers from Marmie.
Dear Emily,
I am thinking of you, James and Alivia all the time...checking the blog daily to know how to pray. Will pray as you asked us to.
~krissy evans
we are praying for all three of you...thinking about you a lot. asking God for mercy and healing and continued faith. and some hope and joy too.
the regeimbals
thank you for posting the updates Emily...my heart aches for Livi and you all tonight. I'm so grateful she's surrounded by a godly family and amazing parents. Thank you for doing everything you possibly can to care for her!
Praying for all of you, Emily.
Cathy S.
Many prayers to you and your family. I've been reading your posts on Livi's treatment, progress, etc. for many months now. I pray that your faith in God will continue to guide you and strengthen you throughout this tough journey in life. You're a very strong woman...to even get on here and post....I admire your will. God will take care of you always. This website is a blessing to many...through your tough days, you have strengthened me, as a person, in more ways than you will ever know. God bless you and your family. Give Livi a big hug and kiss.
P.S. It is through your friend, Beth Chase, that I was guided to this site.
Wow Emily, I am saddened to hear that Livi is having such a tough time. Please know that we are praying.
With love,
Amy
I am checking your site often and am thankful for the updates. I continue to pray and ask all I know to do the same. All of these prayers, hopefully we will be answered very soon. Love to all, Betsie
God today we ask you specifically to keep Livi's airways open. Please let her be comfortable and give Emily and James strength and grace to continue their care for darling Livi. In Jesus name, Gigi
Thankful for nothing being wrong with her lungs. Praying that tomorrow's dose brings her quick relief. Praying as well for you, Emily and James. Hang in there.
Zion asked about Livi this morning, so we checked the blog. I told him what it said and he prayed right then and there for her.
Praying for all of you.
steph from WV
it brought tears to my eyes as I read about you poor Livi and what she's going through you are both soo strong....and I will continue to pray for you and for Alivia's complete healing resting in God's grace
Becca
it brought tears to my eyes as I read about you poor Livi and what she's going through you are both soo strong....and I will continue to pray for you and for Alivia's complete healing resting in God's grace
Becca
Oh Emily, I wish there were something more I ... we ... could do for Livi and all of you there with her! Yet, He is able to more than we can ask (and wow! are we ASKING!!!), He can do more than we can think (and oh, the wonderful things I THINK of that you all can do once she is well), and He is able to do even more tahn we can IMAGINE (and since I can't imagine anything more wonderful than Livi being healed ... :) ... May your confidence be in this Incredible Father who loved us first. (And, My heart aches for you all.) Love, JanetS.
God laid it on my heart to lift little Alivia up in prayer this morning. I just could not stop praying for her. I am going to be faithful in praying, praying and praying for her. Let us all be diligient to pray without ceasing.
Love you all
Loretta Bueche
I will attest to that. Loretta was particularly burdened for Livi this morning, and labored exstensively in prayer. - a great example showing how Alivia is on God's heart.
Rebekah wanted me to read your blog before putting her to bed. She said she wants to know how to pray for Alivia. Well we're off to lift your family up.
Pauline and Rebekah
Praying for you all and especially for your dear baby girl. I often find myself crying to God and begging him to quickly heal her so that you can all be rid of this trial. You are certainly facing this trial with so much courage and love.
We love you!
Yoders
Emily et al.,
I know...I know how horrible this for all of you. I know how badly you want to grab Alivia and run out of the hospital with her. I was tempted many times myself, but firgured I would get caught because a) I would trip myself over Ryan's lines and probably end up spending a night as a patient and b) they at least have to chase you down to get back the expensive equipment you'd be dragging behind you. So, I resisted and waited.
The good news is that Alivia will remember none of this. Ryan was 2 1/2 for his open heart surgery and he told me yesterday that he has never slept at the hospital, he just played there with the trains.
We're both lucky our kids were so young when they go through this.
Please let me know if you'd like to go out for dinner. OR, you or a family member can crash at our house for a night or two if you need a break from the lounge. Kirk goes to HMC everyday by 8 so you could hitch a ride with him. We only live 15 minutes away so you could back quickly if need be. Please consider it. We'd love to host one or more of you. Give it some thought.
Holly, Kirk, and Ryan Swanson
Jesus please heal Alivia....
Dearest Emily and family,
I have used the tree that was given to us at your wedding to spark prayer for Livi. It is funny I have watched little growth over the past years and have wondered why. It doesn't seem encouraging, does it?
Then the Lord helped me to realize that the roots of the little tree are being forced down to the water table...the growth goes deep where it really isn't seen by anyone.
Then He told me of how your growth isn't always seen or felt. But it is the same thing. He is helping you to grow during the time you spend in His Word when you feel sad or overwhelmed, it grows more in the time that you spend with Him, telling Him your cares and worrie..Prayer...and continues to grow as we stand with you in prayer for your family.
Please know that He loves and sustains you even when you can't see it, or don't understand what's going on.
We love you and hold you forever in our hearts and prayers.
Love,
Norm, Pat, and Jason Burns
When times are hard and walls come before us, we shall not need a battering ramnor crowbar. The Lord Himself will do the impossible for us and the unexpected and unexplainable shall be a fact.
Ah, Emily!
I hope Livi's neck doesn't hurt like "swollen glands" do.
Praying and pleading for healing, comfort, wisdom and strength.
Asking...knocking...and seeking.
Mary Ann K.
Just letting you know I've been thinking of you all weekend and praying w/ my family for Livi.
Praying daily for Livi and for all of you.
That sweet girl. I am praying, praying, praying for you all!
We are thinking of you and praying for all of you through this this difficult time, and praying without ceasing for Livi's healing. We are praying for your strenghth and faith and the doctor's wisdom. So many people love you all and are carying you in your prayers and in their hearts-please tell Alivia how many people she has never even met love her and are praying for her and her family and give her hugs and kisses from us- because we would if we could. She is so sweet and so brave- just like you. Emily, and all your family. May God bless you all with a very special grace and a very special healing for your beautiful litle baby girl. Love, the Vandernecks and all their family
Emily,
As I read your entry for the second time today (wanted to comment earlier today, but found myself pretty choked up and at a loss for words) I started singing this song and thought I would give you the lyrics. He truly is Livi's air and her everything. I'm praying for your faith, that you would not become discouraged by medical terms and probabilities. Your baby is in the hands of a loving God. He is with you! This is the song God gave me tonight for you (you know it well)...
This is the air I breathe
This is the air I breathe
Your holy presence living in me
This is my daily bread
this is my daily bread
your very word spoken to me
And I'm, I'm desperate for you
And I'm, I'm lost without you
You are the air...I breathe...
Emily, James, and baby Livi,
Hoping that this day brought some positive changes for you all. My praying never ceases. NEVER.
Praying for a miracle and continued strenght for all of you! - Sue F.
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