Moving on out again...

Grace spent the day with Mom today. Mom noticed that her heart rate seems to be higher, but the storming seemed to be more under control. The doctors are saying that they hope to transfer her back to the rehab floor tomorrow.

The big concern for Grace is still the balance of all the drugs. The doctors need to use the drugs to control the storming, but at the same time these drugs sedate Grace to the point that is difficult to tell what she can and cannot do. Grace when heavily sedated keeps her eyes shut. There were times today that Grace had her eyes opened and Mom would move to the other side of the bed and Grace would turn her eyes that direction. Grace tired of this quickly most likely due to the sedative nature of the drugs.

The new pediatrician who has taken a great interest in Grace will be referred to as Dr. L. from here on out. His staff, especially the social workers, have been extremely helpful and efficient as far as tackling the financial side of this hospital stay. They have informed Mom and Dad of many details and potential problems that can be avoided with the right knowledge and know how. The family's insurance has limited care for home care/therapy and therefore the social workers are helping the family tap into several different resources to provide this for Grace in the future if it is needed.

Please Pray For:

• Praise for Dr. L. and his awesome team
• Praise for Grace's expected transfer to Rehab tomorrow
• Praise for decreased storming
• Prayer for storming to cease
• Prayer for full restoration for Grace
• Prayer for financial provision (If you are interested in helping in this area please e-mail info@gracegoodday.com for more information.)
• Prayer for smooth transition to the Rehab floor
  

Encourgement comes in all shapes and sizes

Mom spent the day at the hospital today with Grace well Dad manned the fort at home with the boys. Grace had a peaceful day with no storming until 8pm today! Praise God! Mom was able to talk to the pediatrician about a possible new plan of action with the drugs. There are drugs that may be more effective and have no sedative effect for Grace that could be given through the spine. Mom is doing a lot of reading on this course of action. The advantage to this is that the drug would be able to be given in a different location which has shown to have a more positive effect on children with Grace's needs. Ultimately, if this course of action worked they would do a surgery in order to install a pump to give Grace the medicine she needs. Mom is attracted to this idea one because the current medicine plan does not seem to be effective and two because these drugs would not put Grace in a sedative state. It is hard to see or for Grace to show us how her brain has healed when she is forced to be "not there" by the drugs.

Mom and Dad believe and know that "Grace is in there"! She is opening her eyes and moving them in a direction and a short time after that she will move her head that same direction. There is a delay between the two actions, but they are definitely purposeful. Praise God!

Many posts ago we told you about a little girl in a similar condition as Grace who is the same age. Mom and this little girl's mom were able to connect and support each other. Well, we have good news! This little girl has shown tremendous progress just as Grace has, but it looks a little different. This little girl is making sounds which the doctors have said are the beginnings of speech, moving her feet and sitting up on her own for a short time. This is a great encouragement for Mom and Dad to see yet another situation where the doctors said there was no hope to be redeemed through our hope in GOD!

The mom of this little girl has told Mom that they needed to exchange phone numbers because Grace and her daughter were going to have to a play date in the future :)

Please Pray For:

• Praise for encouraging news of others who are in a similar state as Grace
  
• Praise for financial provision (If you are interested in helping in this area please e-mail info@gracegoodday.com for more info.)
  
• Praise for the many people (I would venture to say 100's) that are praying for Grace daily!
  
• Praise for the availability of this new pediatrician who has taken such an interest in Grace!
  
• Praise for all those visiting Grace at the hospital and spending time with her when Mom and Dad cannot be there
  
• Wisdom concerning giving medication through the spine
  
• Prayer for continued balance between marriage, family, work and the hospital/Grace's care
  

Again, thankful you to all of you who check the blog regularly for updates in order to know more how to pray! The family and we are greatly encouraged by the comments! Keep them coming! Please don't think that you have to have something long to say in order to comment - if you have something long and elaborate that is awesome. But a simple "I am praying for you" or Bible verse is great encouragement too! Encouragement comes in all shapes and sizes and your words of encouragement may not look like someone else's, but that does NOT mean they are any less needed or important to the family!

Confirmation

Mom had lunch with the girls from bible study yesterday. She said it was nice to get out and have some much needed girl time.

Dad spend the evening at the hospital with Grace. The nurse report was that Grace had a good day with little storming until 1pm. The pediatrician the family is working with came to rounds even on the weekend. He has really taken a great interest in Grace's care and has a whole set of fresh ideas. He shares a similar philosophy of care with Mom and Dad which has been a relief.

The doctors are still working with the drugs and trying to figure out the best combination of them for Grace. The pediatrician has asked that the drugs be given to Grace in the smallest dosage possible and then move up as necessary rather than giving a large dose and backing off. This strategy for drug dosage was an area of great concern for Mom and she is very relieved that this pediatrician has the same view of things.

Dad and Mom have really been seeking God on a new living situation to accommodate the needs of Grace. Mom was talking to God about this a week ago and felt strongly that God was asking her to stand in faith that Grace is healed and they would not need a new place to stay. Mom felt like she needed confirmation before she acted on that. Well, the apartment they saw as "perfect" and even had put a deposit down on fell through. Mom was extremely disappointed and frustrated until Dad pointed out, "You said you needed a confirmation for God asking you to not worry about a place to live - wouldn't this be a confirmation". Wow! So, let's stand together with them that a new place is not necessary because Grace will be walking out of that hospital chatting away!

Please Pray For:

• Praise for time with friends for Mom
• Praise for the financial provision that keeps pouring in (If you are interested in helping in this area please contact info@gracegoodday.com.)
• Praise for this new pediatrician who is very committed to Grace's care
• Praise for Mom and Dad's faith throughout this whole situation
• Storming to cease and Grace to be completely restored
• Wisdom for the doctors/nurses
• Endurance and strength for the family
• Discernment for Dad and Mom to balance between trusting that God has given them doctors for a reason, but at the same time being asked to stand in faith that GOD has healed Grace
  

Keep on the Sunny Side of Life

Grace's day included more sun than shadows.

Neurology did another brain scan on Grace. Those following the situation from the beginning will remember that brain scans shortly after the incident were interpreted as either sluggish or inactive. This scan showed a considerable amount more activity than the last one!

Mom spent a lot of time praying with and hanging out with Grace today. She even laid down next to Grace and watched a movie with her.

Grace's storming also lessened today, but to get there the doctors moved her from a medicine drip as needed to actual dosages. This is not something that could happen in rehab or at the family home.

In an unusual circumstance, the home the family had been looking at to accommodate Grace fell through. It appears that God may have different plans there.

Please pray for:

• Complete healing and restoration for Grace
• Strength and unity for dad, mom, and the family
  
• Complete healing for Mom and her gall bladder
• Financial Provision (If you are interested in this area please contact info@gracegoodday.com for more information).
• It's pretty apparent that only God knows what's truly going on here. Please also pray for whatever else you feel led to pray for in this situation.

A Sheep in Wolf's Clothing?

Grace had an interesting day today. It's somewhat difficult to discern what is good news and what warrants prayer.

Pro?: With the use of medicines, Grace is storming less and her heart rate is coming back under control.

Con?: Grace is still stiffening and posturing in a lesser form of storming.

Pro?: Grace had an episode that neurology says is a different type of storming that indicates that Grace's brain is healing. However, to deal with the "different type of storming", neurology prescribed an anti-seizure medication.

Con?: The doctors present at the time it happened labeled the incident as a seizure. (Grace was recently taken off an anti-seizure medication as the doctors worked to reset the drug regimen. It's unclear at this point whether news of a seizure would make the situation better or worse.

Pro: Grace's new pediatrician is going to attempt to be at the doctor's daily meetings. Today he brought a host of fresh ideas to the meeting and began to take charge of Grace's care.

Please pray for:

• Complete healing and restoration for Grace
• Complete healing for Mom and her gall bladder
• Financial Provision (If you are interested in this area please contact info@gracegoodday.com for more information).
• It's pretty apparent that only God knows what's truly going on here. Please also pray for whatever else you feel led to pray for in this situation.
  

Rockabye

As the song goes, "Everything's gonna be alright. Rockabye"

No major updates on Grace today. For now, she's still stormin' in ICU.

Mom had her consultation for her gall bladder surgery today, and so Dad was with Grace today. He'll probably be home late, and mom is going to get some well deserved shut-eye.

We'll post more when we hear more. Possibly tonight, probably tomorrow.

Women's Intuition

The ICU doctors are at a loss to explain Grace's continued storming. They don't have any evidence to suggest a spinal infection, but have been pushing to do a spinal tap just in case. Mom has been uncomfortable with this, but didn't have a solid reason to back up her uneasiness - until today. The main doctor called in sick today, and when Mom consulted with the acting physician, she was informed that a spinal tap would require:

1. Complete sedation putting Grace into a state of paralysis
2. The reintroduction of a ventilator, which Grace has been free from for weeks
3. Stopping the use of the g-tube, which is finally working correctly
   

Also, the doctor on call mentioned that the way Grace arches her back during storming would put her at an extremely high risk of being permanently damaged by a spinal tap at this point.

None of the above had been mentioned to mom and dad when the doctors recommended said procedure.

The doctors are starting over with Grace's medicines. They're assuming that Grace needs no medication, and adding things back as needed, rather than continuing with the "Well, she's been on X for a long time now" regimen. It's a process. Grace is still storming a lot.

Grace is still making great progress, despite the storming. She's opening her eyes and blinking more. The nurses no longer argue that Grace is making purposeful movement. She has the presence of mind to remove those annoying sticky tape thingys that take her pulse. (Who can blame her? If it was me, I'd be tempted to do that too!) When she's congested, she puts her hand near her throat. When the feeding tube was leaking, she would put her hand there. It's too intentional to simply chalk up to coincidence.

Mom has her appointment tomorrow to discuss options for how to deal with her gall bladder.

Please pray for:

• Complete healing and restoration for Grace
• Complete healing for Mom and her gall bladder
• Total follow-through from the family's health insurance
• An end to the storming once and for all
• Financial Provision (If you are interested in this area please contact info@gracegoodday.com for more information).