Holding her head high

I am finally posting and everyone cheered and said, "it is about time!". Mom had lots to report during our last conversation.

Grace is holding her head up which is quite an accomplishment. She is moving both her feet and legs. She is leaning forward a bit when in the wheel chair or when sitting with Mom in effort to give a hug. She continues to become more and more alert as they wean her off of medications.

Her feet seem to have corrected themselves and there is a good chance that surgery will not be necessary.

Mom is considering requesting another MRI to check on brain activity/function. Mom knows that Grace is improving day in and day out and does not need to medical proof, but she feels that it would benefit some of those working with Grace. The majority of those helping Grace medically are on the same page as Mom as far as believing for Grace's recovery, but there are a few who do not share that view. Therefore, their care for Grace is focused on "sustaining of life" rather than on rehabilitation. Mom thinks an MRI (aka: medical proof) may help to change their attitude when working with Grace.

Please Pray For:

• Continued daily signs of improvement for Grace
• Strong and united marriage
• Complete healing and restoration for Grace
• Wisdom on Grace's continued care
• Financial Support (If you are interested in this area please contact info@gracegoodday.com)

We haven't fogotten about the blog

I have no news to report, but I wanted to make a post to clear up a misunderstanding. Many people have been asking why there have been fewer posts to the blog and none as of late. Please be assured the blog is still a "go".

Mom has been extremely busy with family being in town and the extra challenge of caring for her mom who was recovering from heart surgery, as well as, the rest of the family. Mom's phone calls have needed to be fewer and I have been out of town so catching each other has presented quite the challenge. The last message I received was that there was some "exciting new things Grace was doing". That message was last week so I can imagine Mom will have a whole lot to report once we do get in touch. Thank you for your continued prayers and your commitment to checking the blog - the family deeply appreciates all of the support!

Facial Expressions

Grace continues to make progress. She has begun to move her legs more and mom reports that the movement is very similar to when Grace began to move her arms a while ago. She is completely weaned off of one of the strong medications that was to help with the storming. Grace has not stormed in several weeks. She will be continued to be weaned off of other storming medications as time goes on, but at this point Mom wants to focus on getting Grace on a more of a typical eating schedule. At this point Grace is on a continuous feeding cycle. Mom wants to move more toward three meals a day with nighttime feeds in addition.

Grace has not made any sounds as of yet since the special valve was placed, but she continues to make purposeful movements. Grace will begin making the physical therapy motions without her mom's help. She had several facial expressions to show her dislikes of certain activities. Grace's speech therapy has been going so well that they are planning on doing it more often. She responded to the taste of lemon with a lip pucker.

Mom's mom (grandma) is visiting the family from out of town. She went into the hospital last week with chest pain which resulted in her having a shunt put in. Mom will be extra busy taking care of her Mom until she gets back on her feet again and the rest of the family of course. Mom was so thankful that the reason for the chest pain was found and remedied before it turned into something more serious.

Grace's nurses were all on vacation at the same time this week. Although, Mom appreciated the efforts of the substitute nurses she was reminded how thankful she is for Grace's routine nurses who share the family's goals for Grace's progress.

The boys continue to keep Mom busy. The oldest brother has really learned how to be gentle around Grace. He loves being by her side and giving her hugs. The youngest is still learning that climbing on her head is not the best option at this point, but will learn soon :)

Mom said that in some ways she feels like she has had a special needs child forever and that things are becoming more routine. This is a relief in some ways, but in others it makes it more of a struggle to continue to stand firm in Grace's complete healing and restoration. That balance is challenging to say the least.

Please Pray For:

• Vocalization from Grace
• Quick recovery without complication for Grandma
• Wisdom in changing Grace's feeding cycle
• Balance between what is reality of the situation yet still standing in faith for Grace's complete restoration and healing
• Strong and united marriage
• Financial Provision (If you are interested in this area please e-mail info@gracegoodday.com)
  

Awaiting first sounds

Grace had a special valve put in along with her trach this week. This valve makes it possible for Grace to use her vocal cords. This is the first step toward encouraging/teaching Grace how to communicate. In a previous post we had stated that this valve was replacing the trach and that was a misunderstanding on our part. Grace has not tested out those vocal cords yet, but we are praying that Grace will attempt to vocalize any day!

In a couple of days, Grace will be completely weaned from one of the powerful drugs she was on to help with the storming. Mom is SO excited about this accomplishment. Other drug weaning continues and Grace has been responding well to it.

Grace's sleep patterns have once again evened out. She is awake during the day and sleeps at night.

Please Pray For:

• Continued success with weaning of medications
• Grace to use her vocal cords
  
• Continued strength for all members of the family
• Financial Provision (If you are interested in this area please contact info@gracegoodday.com)
  

Temper Tantrums

Grace had a planned hospital visit to check the status of her trach this last week. The trach is doing wonderful and Grace's vocal chords look fantastic. This is good news because it is common for the vocal chords to be damaged when a trach is needed. Grace will go in soon to see if she can get the trach replaced with something that would allow her to use those vocal chords. The other option would be to begin to teach Grace to communicate using her hands and some sort of communication board. Both options are exciting, but Mom is leaning toward putting Grace's vocal chords back to use :)

Grace has been storm free for over three weeks now which is a HUGE praise report. Mom says she still has little episodes now and then. Mom described these minor episodes as more of a "temper tantrum" response to something she does not want to do such as therapy. Mom communicates that therapy is something that needs to be done and directs her to stop. Grace typically responds by stopping! Mom is excited to see this progress and form of communication.

They continue to wean Grace off of more and more medications and Grace continues to become more and more alert! The weaning is going well and quicker than expected.

Please Pray For:

• Praise that storming has CEASED!
• Wisdom with trach replacement
• Continued success with medication weaning
• A strong and united marriage and family
• Financial Provision (If you are interested in this area please e-mail info@gracegoodday.com)
  

Walnuts

Grace went to the park the other day and the family put a walnut up to her nose. She focused on it with her eyes and seemed to like the smell. I asked for some clarification about Grace not "seeing" at this point. Mom does not believe Grace is seeing at this time, but that she uses her sense of smell quite effectively to locate objects or people with her eyes. Mom explained it best when she said that she does not startle when you suddenly put something in front of her or motion right in front of her face unless there is a sounds.

Right now the focus has been weaning Grace off of certain medications as well as trying to regulate her food intake. Grace has gained some weight which is concerning to Mom. They believe it is due to the amount of food she is getting in relation to her lack or activity at this point. The doctor and Mom are working on this area to make sure Grace gets just the right amount of food.

The nurses continue to bless the family. One of the nurses helped Mom decorate the master bedroom quite romantically I hear :) Another nurse offered to work "overtime" for no pay so the family could enjoy sometime out together on the 4th.

Please Pray For:

• Complete healing and restoration for Grace
• Praise for the nurses
  
• Wisdom in regulating Grace's food intake
• Financial Provision (If you are interested in helping in this area please e-mail info@gracegoodday.com)
  

Sour Lemons

The posts have been less frequent lately and will continue to be per mom's request. Obviously, mom is very busy and she does not always have the time to call and give a detailed report. If there is nothing new to report mom needs to spend that time doing other things like hopefully relaxing :) Therefore, posts will come every few days from this point forward.

Grace continues to show steady progress. She had another session of speech therapy today. She responded to the therapist prompting her to find her in the room. The therapist would call her name and Grace after a few tries would locate her by moving her eyes and head toward her. She also showed purposeful tongue movement today as well as a reaction to lemon put on her tongue. Mom explained her facial reaction as an "Elvis look" This shows that her taste buds are returning!

Grace continues to storm for a few hours at a time off and on, but she has not had an intense storming session in quite some time. This is VERY exciting progress!

Mom had 4th of July pictures done of the kids and has requested that we put up pictures for all of you to see how your prayers have helped this little girl day in and day out! The family is less concerned about Media attention and is excited to share a visual example of her progress to all those around the world who are praying for her! Mom hopes to send those pictures to us when she has a spare moment.

Please Pray For:

• Complete healing and restoration for Grace
• Ceasing of storming once and for all
• Financial Provision (If you are interested in this area please e-mail info@gracegoodday.com)