Rebooting the System

Grace continues to make amazing progress!

The other day she began attempting to pass a rattle back and forth between hands. She's also able to recognize voices and get excited when mom or dad walk into or out of a room! It's still unclear if she has vision or not. It sounds almost as if Grace has taken a few steps back developmentally as she's tried to recover. Now that her body is getting things under control, she's quickly retracing all the developmental milestones a newborn would go through.

Mom and dad have ruled out one experimental form of treatment, as their research indicated that the best application doesn't match up with where Grace is today. They continue to actively pursue things that will help Grace.

Please pray for:

• Strong and united marriage
• Rest for Dad and Mom as family is in town
• Financial Provision (If you are interested in providing in this area please e-mail info@gracegoodday.com)

Slow, Steady progress

There isn't much new to report today. Grace is getting over an infection, and returning to normal. She's beginning to go longer between storming episodes, and when episodes happen, they tend to be shorter.

We only had a short conversation with mom and dad tonight out of respect for their time with family.

Please pray for:

• Storming to cease once and for all
• Strong and united marriage
• Rest for Dad and Mom as family is in town
• Financial Provision (If you are interested in providing in this area please e-mail info@gracegoodday.com)

First Sounds

I have a lot to report tonight. Grace has some sort of infection. Her breathing is not like it usually is and she is not acting herself. Mom was at the doctor a lot of the day yesterday and pushed to keep her from going into the hospital. The result is breathing treatments every hour around the clock and extra care.

Despite the infection, I have some very exciting things to report. Due to Grace's responsiveness she is no longer considered in a "coma" on the comatose scale that the medical world uses. She is looking at whoever is talking and also localizes her response physically when experiences pain or simulation.

Due to the breathing treatments and the frequency of having to remove the trach they are doing a new procedure. Instead of replacing the trach they are cleaning it and replacing it. Well, last night while Mom was in the other room cleaning it Grace vocalized for the first time. She did not say a word but made a sound repeatedly. The trach goes through her vocal cord area and basically prevents her from making sounds. But, even before Grace had the trach she was not vocalizing. This floored Mom and everyone is SO excited about yet another step of progress.

In addition, the family is looking into some alternative treatment for Grace that has shown incredible results in situations like Grace's. Mom has found a place that does this treatment for free in Florida so the family would just need to pay for lodging, food and airfare. The treatment time would be about a month and if it was successful the family would buy a used machine for this treatment for the home. All of this is still very much in investigation and no final decision have been made.

Please Pray For:

• Infection to be identified
• Healing for the infection
• Continued encouragement for the family as Grace's healing is manifested
• Wisdom with this alternative treatment
• Financial Provision (If you are interested in this area please e-mail info@gracegoodday.com)

Storming lessens

Grace had a trip to the emergency room today, but all is well. Her pupils were dilated and the doctor urged Mom to take her in. They did a scan and there was no swelling on the brain. They seem to have returned to normal and all is well. I asked about the brain scan and if it showed increased brain activity. Dad reported that the specific scan they did is not detailed enough to show detailed information about her brain.

Grace was storming some today, but Mom said the storming was very different than in the past. Her storming seemed to be less intense.

Mom was out tonight scrap booking with her Mom. She was getting a much needed rest away from her household duties and caring for the kids.

Please Pray For:

• Storming to cease once and for all
• Strong and united marriage
• Rest for Dad and Mom as family is in town
• Financial Provision (If you are interested in providing in this area please e-mail info@gracegoodday.com)

Eye Contact

The storming episode lasted more than 24 hours, but we are happy to report that Grace was storm free today! She is continuing to shake the rattle. Mom also commented that she is looking at people when they talk and turns her eyes/head toward whoever is talking at the time.

Grace has 4 out of 5 days booked with an appointment this week. The one appointment in particular that needs prayer is her Physical Therapy appointment. They think Grace is loosing tone in one of her arms - interestingly enough that is the same arm/hand she is using to pick up and shake the rattle. There is treatment that could help with the tone of the arm, but would hinder mobility at this point. Mom is not sure she wants to do anything to limit mobility at this point.

Please Pray For:

• Continued increase in responsiveness
• Complete healing and restoration
• Wisdom when discussing options with the Physical Therapist
• Rest amongst the appointment filled week
• Financial Provision (If you are interested in this area please contact info@gracegoodday.com)

More Family In Town

Grace's other grandma is in town (Mom's mom). She arrived in last night and will be staying for a while.

Grace had a long streak of no storming for almost a full week. She began storming again yesterday and Mom said that she had had a rough day.

My conversation with Mom was very brief due to family being in town.

Just an FYI - if we miss a day or two of posting it is due to not hearing from the family on that particular day. I imagine with family in town that our conversations will be brief and may not be daily.

Please Pray For:

• Storming to cease
• Family to provide a relief/rest for the Dad and Mom
• Wisdom for a possible night nurse on the weekends
• Strong and united marriage for the couple
• Financial Provision (If you are interested in this area please e-mail info@gracegoodday.com)

Shake, Rattle, and Roll!

We have some very exciting news to report tonight! While mom was playing with Grace today, she put a rattle in Grace's hand and began shaking the hand. Then, after mom stopped, Grace began to shake the rattle! This process repeated several times. This activity showed intentional, intelligent movement, and is the most active Grace has been since the incident!

Mom and dad had a grief counselor visit Grace's brothers today. She is from the hospital, and has experience explaining difficult situations to children in terms that they can understand. That went very well too.

Please pray for:

• Complete restoration and healing for Grace
• Discernment in hiring the right help.
• Medication weaning to be successful
• Sensitivity of those around the family during this trying time
• Financial Provision (If you are interested in helping in this way please e-mail info@gracegoodday.com)

Weaning, Waning and Waking

Grace continues to experience steady progress. She had a full 5-day period with no storming, which is the longest she's gone since the incident! Grace is also starting to settle into a more normal sleep/wake cycle, and she's responding to touch and sound!

The process of weaning Grace off of some medicines is coming along very well. One medicine in particular has been cut back significantly, and as a result Grace continues to be more alert each day!

Mom and dad have one weekend nurse confirmed for days on alternate weekends, but are still considering more. As is completely expected when looking for a medical professional that you allow to spend significant time around your family while you entrust him/her with your daughter's life, mom and dad are being cautious and want to be sure they're making the right decisions.

Mom, along with one of the nurses, and several independent family friends have each had dreams lately of Grace suddenly sitting up, talking and saying "Mommy, I see the clouds!" Mom hadn't announced it to the world, but she finds it interesting because she was considering decorating Grace's ceiling with clouds.

The family won't be completely back to normal until the aforementioned dream comes true, but for now they are settling into a routine. The family hasn't set a date, although they have talked about returning to the location of the incident for Grace to say hi to the people who helped save her life!

Please pray for:

• Complete restoration and healing for Grace
• Discernment in hiring the right help.
  
• Medication weaning to be successful
• Sensitivity of those around the family during this trying time
• Financial Provision (If you are interested in helping in this way please e-mail info@gracegoodday.com)

Finally Able To Touch Base

Mom and I were finally able to get a hold of each other after quite a while. The family has been busy with family visiting and lots of appointments. Dad and Mom were able to go to a wedding this Friday by themselves. This was the first time they had been out by themselves since the accident.

Grace had some storming on and off on Friday and today. They are going to start weaning her off some medications and see how it goes.

As you can imagine there are a lot of logistics in order to care for Grace. Please pray for all the different appointments, prescription refills and paperwork to run smoothly through this process.

Please Pray For:

• Logistics of Grace's care to run smoothly
• Medication weaning to be successful
  
• Complete restoration and healing for Grace
• Sensitivity of those around the family during this trying time
• Financial Provision (If you are interested in helping in this way please e-mail info@gracegoodday.com)

Hoping to talk to Mom tomorrow

Mom has not called the past two days. I am sure having family in town and adjusting to a new nursing schedule has kept her quite busy. I hope to talk to her tomorrow.

Fun in the sun

The family has enjoyed some quality family time as of late. Grace spent the afternoon in the sun with her brothers. Her brothers were busy doing water balloons. Mom had some fun with Grace while sprinkling her with the garden hose. Grace reacted to the water which was exciting to Mom.

Good news - the interview with the potential weekend nurse went well and she is going to care for Grace every other weekend. This will be a huge blessing for the family. With this addition in nursing care, Mom was discussing the options for some quality time out with Dad.

Please Pray For:

• Praise for a weekend nurse
• Praise for quality family time
• Prayer for complete healing
• Prayer for a strong marriage
• Prayer for financial provision

100

We've now posted 100 times since the incident. Grace has made a lot of progress, and still needs your prayers.

We didn't hear from the family tonight and presume they're working on getting some much needed rest.

The little things

Grace stopped storming today. She had been storming for longer than the usual day, so it was nice that mom had somewhat of a "break" today.

Yesterday, shortly after the nurse left a tornado siren went off. We all know the normal safety procedure of going into the basement to take cover. However, with Grace hooked up to the machines, it becomes a bit more challenging. Mom finally got everything she needed together and went downstairs with Grace and her brothers.

Today is mom and dad's wedding anniversary. To celebrate, mom and dad each took some alone time, and then they're planning to possibly talk or watch a movie together.

Please pray for:

• Storming to cease completely
• Discernment for the right night nurse
• Restful time when Dad's mom comes into town this week
• Financial Provision (If you desire to help in this area please contact info@gracegoodday.com)

Possible Weekend Nurse

Grace continues her abnormal storming cycle. She is storming more often than before her infection. Her heart rate continues to be higher than normal. It was a stressful day today due to the night nurse calling in and Mom needing to do all the care.

The family has switched nursing shifts around and are going to be able to go out together Friday night to a wedding which will be a welcome relief. In addition, Dad's mom is coming out to help take care of the boys and give the family some much needed rest.

Mom clarified something for me tonight that I have personally been asked many questions about so I thought I would put it in the blog. Grace's eyes have been open consistently when she is awake and closes when she is asleep. Apparently, she has been doing this since about the 7th week after the incident. I apologize for this miscommunication. Sometimes being long distance has its disadvantages.

The family has the allowance for 16 hours of nursing care a day, but has been unable to find nursing care for the weekends. Mom called some independent nurses today and she is meeting with one of them soon to see if it will work out.

Please Pray For:

• Storming to cease completely
• Special time for the couple for their anniversary
• Discernment for the right night nurse
• Restful time when Dad's mom comes into town this week
• Financial Provision (If you desire to help in this area please contact info@gracegoodday.com)

Peaceful

Grace had a longer than typical storming session since being home, but Mom's warm embrace caused the storming to stop yesterday at 6pm. Since then Grace has been peaceful.

The family was able to spend some quality time together at a park today. Dad's mom is coming into town this week to help the family with the boys. Mom and Dad also celebrate their wedding anniversary this week - they are hoping to go on a date just the two of them.

Please Pray For:

• Praise for storming that ended during Mom's embrace
• Praise for family coming into town
• Praise for a fun filled day at the park
• Prayer for storming to cease completely
• Prayer for quality time for Dad and Mom to celebrate their wedding anniversary
• Prayer for financial provision (If you are interested in this area please contact info@gracegoodday.com)