Once Again

And we find ourselves here…once again….we just left this place on the 1st of August!!! Here, lets just do this:

June 7- Diagnosed with acquired Hydrocephalus
June 9- VP shunt placed
July 18-27 Emergency EVD (external ventricular drain) placed to make her ‘safe’, original VP shunt moved to left side thinking that the right hand position was causing the enlarged ventricle to not communicate with the original shunt, 2 shunt revisions due to shunt malfunction
July 29- Aug. 1- Shunt malfunction and revision
Aug.4- here we are again….

So needless to say, I tried seemingly EVERYTHING to rule out her vomiting and irritability she’d been having on and off the past couple of days. Was it that she wasn’t feeling well from possibly teething? Coming down with a bug? Was her toe site becoming infected? Could it be gas? Ahhhhh!!!! Finally today, after agonizing over whether to call or not, we decided it was time- she had not been resting well and we had been trying everything to no avail. The neurosurgeon on call knew her well and said, ‘since it’s Poppy, why don’t you come on in for a scan. If something has changed, I’ll be by to talk with you, hopefully we can just rule this out and you can be on your way.’ So we headed right in.

CT scan and shunt X-ray series. We waited…

I’m trying my best to console cranky, and I look up to see the neurosurgeon. Though he’s very nice and always so thoughtfully thorough, this is never a good sign. My heart sank- my stomach immediately a ball of anxious nerves… Please no, please Lord no, he’s not down here for us….he can’t be down here for us…we just got out of this place…we were so enjoying being home all together!!!! And then….he was….reaching out to purell his hands before entering our room. Of course, I thought…. Why wouldn’t he be down here for us…this is how she rolls…this is our life. Ugh-sick to my stomach…praying Lord, You have brought us here for a reason, I know You are always with us…

He proceeded to pull up her CT scan from today and one from July 30 to compare. It showed that the latest shunt revision was doing a great job of draining most of the ventricles- this is great!! Praise God!! However, the one ventricle has grown 4-5mm since the scan on the 30th. 😦 The last few scans, the surgeons were really hoping and thinking that the enlarged ventricle had started to communicate with the shunt, but it turns out it hasn’t. The blessing in all if this is that Poppy’s neurological status has not changed, so while they opted to admit her for observation, and are prepared to act should she start to deteriorate rapidly like she did on the 18th, they feel like they have a little time to be sure the plan to deal with this problem ventricle is solid. Poppy’s case will be presented to the board of neurosurgeons tomorrow morning and her case will be discussed amongst them all. The likelihood of this ventricle needing its own shunt sometime this week is unfortunately very real. They really don’t like to use more than one shunt for treatment if at all possible, however this ventricle is proving to need its own shunt. 😦 so utterly disappointed…poor darling girl 😦 another date with the OR.

But as always, He is here with us, holding us, His children, carrying us through yet another trial. His grace is sufficient. As God guides, God provides. God provided a place for Crosby to be this week. He usually goes one day a week to a little day care/ preschool to get some socialization and a break from us. The principal had emailed Brad over the weekend to say that one of the kiddos was on vacation and that there would be room for him all week if it worked out. I’d be lying if I said this didn’t get me wondering about what this week would be like for Poppy. I actually said out loud to Brad and my parents, ‘hmmm, He’s provided a place for Crosby to go, I really wonder what that means….really praying it doesn’t mean yet another hospitalization for our girl…’ Brad agreed.

I felt tears come over me numerous times, just soaking in family time these past few days. Understanding what a precious gift it is to just sit and bask in each other and the sweet bond of what family is…everyone all together- never knowing if/when it all could change…so thankful we have been so richly blessed with this time together-it is truly precious. Thank you, Jesus.

It’s like this IS our life, and praise Him, He’s got it under control. He ALWAYS provides exactly what we need at the exact perfect time according to His will. We find rest in Him. Please Lord, help us to keep our eyes fixed on You and please, please grant healing to our precious girl.

Earlier today

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Waiting for a bed

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9 thoughts on “Once Again

  1. My heart is broken for your family. I have undergone 7 surgeries myself in the last 10 years due to ovarian cancer (I know that’s nothing compared to what your sweet baby girl has gone through). I am now healed andcompletely recovered by a miracle of God. I beat all medical odds, but I know the HEALER is JESUS. Satan tried to destory my life, but he was not victorious. The battle has already been won. I have been following your posts about Poppy, and have reached out to prayer warriors to agree for her healing. It is not God’s will for her to suffer… He went to the cross so we do not have to suffer… Though in this life because satan exists, there is a war against God’s children. Satan comes to rob kill and destroy. Poppy is divinely set apart as a child of the Most High God. Satan has tried to kill steal and destroy. But what the enemy has stolen must be returned 7 fold! No weapon that is formed against Poppy shall prosper, and any tongue that should rise up against her in judgement thou shalt condemn (those words). She will live and not die and proclaim the works of The Lord! Nothing by any means shall hurt her. ByHis stripes she is HEALED and made whole! We speak LIFE over her… Lord, we pray that these doctors hands are led, guided and directed of You. They would do nothing more and nothing less than you thy God has ordained. We bless any and all medication to her body and we thank you Lord for Your supernatural touch. I pray the Holy Spirit would comfort her right now in the Name of Jesus. Ephesians 6:12-13
    12 For we wrestle not against flesh and blood, but against principalities, against powers, against the rulers of the darkness of this world, against spiritual wickedness in high places.
    13 Wherefore take unto you the whole armour of God, that ye may be able to withstand in the evil day, and having done all, to stand.
    We put the full armor of God on this family, Lord.
    ARMOR of GOD
    14 Stand therefore, having your loins girt about with truth, and having on the breastplate of righteousness;
    15 And your feet shod with the preparation of the gospel of peace;
    16 Above all, taking the shield of faith, wherewith ye shall be able to quench all the fiery darts of the wicked.
    17 And take the helmet of salvation, and the sword of the Spirit, which is the word of God:
    18 Praying always with all prayer and supplication in the Spirit, and watching thereunto with all perseverance and supplication for all saints;
    Lord, your word says in mathew 18:18 Verily I say unto you, Whatsoever ye shall bind on earth shall be bound in heaven: and whatsoever ye shall loose on earth shall be loosed in heaven.
    So we bind this Spirit of sickness and disease off of Poppy in the Name of Jesus! We come against ANY and ALL word curses and call forth Your Kingdom come, Your will be done here in Poppy’s life as it is in HEAVEN! You give only GOOD and perfect gifts… We call forth perfect health for this baby girl. And Lord I pray REST over this family. Peace, rest, trust and endurance until they see your healing manifest in their baby girl. I will stand in the gap and interceded with you and for your family until we see thismiracle with our eyes. Poppy, your body will bow and subject itself to the Word of God. Total complete healing In Jesus mighty Name. Amen. . To mom & dad, I am so sad to see you go through any of this. I know how sometimes it’s so hard to pray for ourselves, even when we have faith to move a mountain, so I just want you to know there are people standing for you and your little baby girl. Much love.

  2. I watched my family go through simular circumstances so I understand just how difficult this is. I am so inspired by your faith and trust in our Lord. Please know that I will also be praying for Poppy and for all your family.

  3. So so sorry you’re having to go through this again. Even though it seems you can’t get a break, maybe this will be just “a bump in the road” to finally find a solution so Poppy and Crosby can finally start living a more normal life, at least the “new normal.” Thank God they have you for parents! You’re doing fantastic and giving it all you’ve got. Hang in there – you’re in good hands (plus we’re all over here praying and wishing we could more) (((((HUGS)))))))

  4. I just find myself sitting here crying for you guys and for poor Poppy. UGH! Wow, the strength you didn’t know you had, right? I am so, so, so sorry and wish I could wave a magic wand and make it all go away (RIGHT THIS MINUTE) for her, for you, for her little brother. I would wave my wand (with a shiny little star on top), say something like, “Bibbety-bobbety-boo, and bless you too.” Fairy dust would rain down on Poppy’s little head, scars would heal, and she’d ride away from the hospital for the last time in her pumpkin-turned-chariot, and she’d go home dancing in the arms of her parents, happily ever after, and hospital visits would be banished to the far corner of the land of Distant Memories.

  5. Sweet Christi, I can feel your heartache. But at the same time your faith is so strong. I am so blessed to be able to lift you all up to the Lord. I have cried many times over Poppy and all she has gone through. But God has a perfect plan for her life. She will be used mightily and is being used as we speak. So many people stop and pray, and that is what God wants to hear. Blessings to you sweetie, sending lots of hugs to you all.

  6. Thy will be done Lord! Continue to guide all staff and help them choose the very best thing for Poppy to live her life to the absolute fullest!! Continue lifting her parents up and give them comfort through all of these very scary times!! Bless you all! Praying!!!

  7. she looks so adorable in her little sun dress…I just want to hold her and kiss her…..I pray this is the last time for this little doll to have anything done…….such a trooper…..love and always prayers your way……Melodee

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