Merry Christmas!!

A few of you have mentioned to me that you continue check the blog frequently as you continue to pray for Abigail, and have asked for more frequent posts. I will do my best, but I am not making any promises until we get back from vacation on January 2nd. Christmas has been wonderful, I really love the lights and sitting in front of the tree with my family early in the morning and before bedtime. Sometimes I think I am more suited to celebrating Hanukkah, though. You see, I really love to watch everyone open presents, so we have been opening them for a couple of days now. The boys have only gotten 3 or 4 gifts each, but they really appreciate them...maybe too much. Yesterday I was having a conversation with Josiah about going to Minnesota to visit our families. "Are you looking forward to seeing Grandma?" "Yes, see Grandma." "Are you going to have fun with your cousin Sara?" "Yes, visit cousin Sara." Then Josiah said, "Are you looking forward to seeing your presents..."

Please keep the health of my family in your prayers. It is definitely cold season in the Hassinger house. Richard started us off a couple of weeks ago with a sinus infection that it took him a week and a half to kick. The boys picked it up next, but not as badly as Richard had it. I have a little bit of it, but Alka Seltzer is my new best friend and helps within 15 minutes of taking it. I was hoping it would skip over little Abigail, but she has been showing symptoms for a couple of days now. Yesterday we made an appointment with her doctor to make sure the trip was still a good idea, and so far so good. We ran some tests to see if an antibiotic is appropriate, so hopefully we will hear back today. Poor thing is congested and having low grade fevers. Her heart rate is up and she is not sleeping well (probably just due to discomfort). Please pray that she can kick this thing, and that we do not have to make any medical trips while we are in Minnesota. Also pray that we do not forget anything too important when we are packing!

Abigail continues to do well on changing over from pump feeds to bolus feeds. We are now bolusing a volume of 150 mls four times a day, so in 15 more days, if all goes well, we should be completely bolus feeding, goodbye pump!! Abigail has surprised us with increased vocalizations, mostly a scream when startled and happy cooing when being held, sometimes twice a day. This is increased from maybe a couple of times a month. I still would not say it is intentional, but then again it is so much more frequent...Our speech therapist made a pretty bold comment the other day saying that she was sure Abigail would vocalize again. At least we know those vocal cords are functional!!

In my bible study this morning I was studying the book of Mark and healings that occurred. Here are some of my thoughts: 1-Mark 8:22-26 In the story of the healing of the blind man why did it take 2 tries to restore the man's sight? I think it may have been lack of faith. I feel like it says to me, you can't just say the right things, you have to believe them in your heart. The man had faith, I mean he came to Jesus, but he didn't really believe that he would heal him. Maybe he didn't think he was worthy. Please join me in praying and BELIEVING that God will heal Abigail. 2-The other verse that came back to mind was one from early on in Abigail's accident - the prayer of a righteous man is powerful and effective. What does this mean, to be righteous? 3-Mark 11:22-26 I tell you the truth, if anyone says to this mountain, Go, throw yourself into the sea, and does not doubt in his heart but believes what he says will happen, it will be done for him. Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours. And when you stand praying, if you hold anything against anyone, forgive him, so that your Father in heaven may forgive you your sins. I think this also answers, a righteous man is one able to forgive others. Who do we need to forgive today?

May I Hold a Pig? May I Pet a Pig?

I have so much to tell you all in this blog, I am sorry I have taken so long to write...I will really have to work on that! The answer to the above question, asked by Abigail several times a day prior to the accident, is yes, you may! Remember, Abigail's favorite movie is Charlotte's Web. Last Thursday we met with some people from Make a Wish, and Abigail is going to receive a wish. Her child life specialist from Cincinnati Children's that visited the boys surprised us and contacted the agency on Abigail's behalf. After some consideration, we decided on a visit to a petting zoo, which will be ours for the day, where Abigail can hold and pet a pig and have pictures taken. I promise to post a few when it happens. We are aiming for spring, when pigs are born so they will be very small. They said that they could possibly help us get a pet pig, but I am not sure that is something I want to do...They are also going to get her a few more switch toys, which will be wonderful.

Thank you all for your contributions to the park bench for Abigail's birthday. We met with a handful of the park rangers and saw the tree, bench, and plaque on the Saturday after Thanksgiving. It was beautiful. It is right in the harbor area where her accident occurred. Jacob, the ranger responsible for finding Abigail and pulling her out of the water, was also able to join us, and there are some special pictures of just he and Abigail together. It was a very nice day.

I received my CNA registration card last week, and have applied to several jobs. Just glad to have the testing done and over with! I have applied to several hospitals, and will probably work for a staffing agency temporarily until I land a job with one of them.

Abigail continues to make progress, and it is always easier when we have the equipment that we need, and it is the right size! We have had a lot of breakthroughs lately, maybe Medicaid is in the holiday cheer? First, we received a bath seat, so Abigail can take tub baths instead of mostly bed baths. Second, some friends gave us a wheelchair that fits Abigail much better last Saturday, and then we got a call saying that Medicaid had approved the permanent wheelchair. So, hopefully in a month or less that one will arrive, and we can pass on this other chair that our friends so graciously offered to someone else who really needs it. Third, we had a fitting for a stander for Abigail, and hopefully that will be approved in the next couple of months. She continues to make progress in the reversing of her foot drop, her right foot is pretty much back to normal, but her left is still about 20 degrees lacking. I think we may do Botox again in about a month, and possibly have that corrected just in time for the stander.

Medically, we are still holding off on any more med weans, but working on the bolus feeds. It is best to change only one thing at a time so that if there is a problem, it is easy to determine what caused it. So far, we are at 120 mls per bolus, 4 times each day, with the remaining volume of her food being pumped in continuously overnight. Our goal is to reach a volume of 200 ml per bolus, which if everything goes well, will take about a month. Then we can not only get rid of the J tube and have a G tube only (which means that if the thing is accidentally removed I can replace it at home instead of making a trip to the emergency room), but we can also get rid of the feeding pump. This is a huge move toward normalcy, which I think helps healing, and also makes Abigail a lot more portable. You only have to bring out bottles of formula, not the pump and equipment that goes along with it. My only negative for making this decision is that we could possibly lose skilled nursing if BOTH of the following happen: 1-Her trache is removed and 2-She no longer needs the feeding pump. In spite of this, I still want to move towards what is best for Abigail. Please pray for success in both of these areas.

I mentioned in the previous blog that we had gotten some computer equipment for Abigail to read stories and play games on the computer. It is going great, and she loves it! So do the boys. While I am making dinner I get her set up and the boys on chairs to watch, and she clicks to turn pages while the boys encourage her by saying, "Click the button" or "Turn the page" or "More, more". If anyone has any computer stories on cds laying around that you no longer need or know of a cheap place to pick them up, please let me know! This is wonderful for Abigail to learn and for her to interact with the boys.

How about Christmas plans? We are making our first trip to Minnesota since the accident. We are leaving on December 27th and returning on the 2nd of January. Please pray a safe, fun, and uneventful time.

I want to leave you again with my strong peace and conviction that Abigail is going to continue to heal, and live to tell her story. Yes, I firmly believe that she will speak and have the presence of mind to use her story to bring others to a saving knowledge of Jesus Christ, our Lord and Saviour. After all, isn't that the reason for the Christmas season? Please join me in petitioning God daily for this, he wants us to ask, and to remember that all good things come from him. I recently had a dream about Abigail, and I believe it was a vision possibly foreshadowing God's plan for her future. Only time will tell. I dreamt that she was a healthy beautiful self sufficient young women. I dreamt that she became a missionary in foreign lands, and that she ultimately gave her life to bring others to him. In my dream I was joyful. When I woke up, I had some processing to do, but why did her save her? For me and Richard, because we love her? Maybe. But how about because of an awesome plan that he had for her. The bible tells us to think of our money and possessions as things we are to be wise stewards of. We do not own them, for they are God's and he has just given them to us to watch over. How about our children? That is a tough thing to consider...

One Life to Love

Hello again everyone! I am finished with my CNA classes, and back in business with the blog. I will take my state test on December 3rd, and hopefully find employment with Cincinnati Children's Hospital. It was fun to be a student again, but I really love being a stay at home mom to my children and would not trade it for the world.

It makes me think of my new favorite song on the radio, "One Life to Love." You only get just one time around, you only get one shot at this. One chance to find out the one thing that you don't wanna miss. One day when its all said and done, I hope you see that it was enough...I can honestly look back and say that Abigail was loved and lived life to its full. And since we never know what will happen tomorrow, I always try to live each day like it is our last for my husband and children as well.

Abigail has hit a standstill in her Valium weaning. Basically, we made the change without issue from 8mg 4 times a day to 4mg 4 times a day, but when we made the drop to 2mg 4 times a day, things did not go well. She became very agitated, startled a lot more, and her pupils became dilated. As a result, we backed up to the 4mg dose. It took about a week to get back to a therapeutic dose, but we are doing well again. I think we are going to take a little break from Valium weans until after the holidays, and then take it a little slower (maybe only drop .5mg per week). Yes, we do see a difference in alertness as a result. She sleeps less during the day and blinks yes and no more readily. Sometimes she just gives you a disgusted look. Now when she wants to be held or out of here chair, she pulls her head and body forward repeatedly and just refuses to sit back.

Since we are taking a break from medicine weans, we have started on changing the J tube to a G tube, and bolus feeding so she is not continuously on the pump. So far we have added 4 boluses a day. Next Monday we will make more changes. I am always in favor of any move toward her body behaving more naturally.

We just received everything we needed in the mail yesterday for a computer setup at our house where Abigail can use a switch to read stories, play games, and listen to songs on our computer. I am very excited to get it all setup. She loves going to Perlman to play, and now she will be able to do it in our own home.

Lastly, her 4th birthday is this Saturday, and if weather permits we will be meeting with Sergent Steve Newsom on Saturday to see the park bench, tree, and plaque. If anyone would like to join us please respond on the blog and we will try to coordinate with you.

Happy Birthday to Me!

The purpose of this blog is to remind you that Abigail will be turning 4 on November 22nd, and celebrations are in order. Richard and I have spent much time considering different ways to celebrate our precious baby girl, and have finally reached a decision. We are going to have a tree planted and park bench placed at Winton Woods Park, possibly near where Abigail's accident occurred, with a plaque in her honor. We have not yet determined what the plaque will say, but it will be a positive message, in remembrance of the miracle that God performed in Abigail's blessed life on February 29th, 2008. The total cost will be $680. I wanted to extend an invitation for you to participate. If you're interested in helping, please e-mail info@gracegoodday.com

Abigail has been tolerating her Valium weans successfully, so yesterday we decreased her daily amount from 24mg to 16mg. Please continue to pray! Today Abigail has been lifting her head from her wheelchair and holding it up on her own. Sometimes she falls forward, then I pick her up halfway and encourage her to lift her head herself. It may take a moment, but she does it without fail. She is getting stronger every day, but is that any surprise? Tonite we drop off the van to get modified. I am so excited!

I am off to nap, while the boys will allow it. Talk to you soon.

"For God has not given me a spirit of fear..."

Back to School

Where to begin! Let's start with Abigail's doctor visit on Monday. First, we discovered that she had only gained one pound in 4 weeks, which is a huge decrease in the rate of weight gain. We decided not to change the volume of her Promote at this time, but to do another weight check in 4 weeks to see how things are going. Dr. Levin noticed a lot of the changes that Abigail has made and was very impressed (we don't always get to see Dr. Levin when we have an appointment, so he hears about her progress, but does not see it firsthand). As a result, we are weaning her Valium. This should be gone in just 5 weeks if all goes off without a hitch, so please keep that in your prayers. We have already cut her daily amount from 32mg to 24mg a day. So far, so good! Lastly, Dr. Levin and I were talking about some upcoming routine visits to check on her trach, and he commented that maybe the trach would not be necessary in a year or so. For Dr. Levin to say something like this is a very big deal...and a wonderful confirmation for me, since I have always had a strong conviction that the trach would not be there forever! Praise the Lord!

Regarding needs for Abigail, I wanted to offer some clarification. We have been so blessed by your unceasing willingness to help in whatever way is necessary. Thank you for showing us God's love daily.

• Clothing: As Jose wrote, we need size 7/8 winter only, and larger sizes anything you can find. I love a great deal, so if you hear of any awesome sales, please point me in their direction!
• Toys: Abigail uses special needs toys, again as mentioned by Jose. Here is a website and a couple of suggestions if you are interested in helping in this way. www.enablingdevices.com who has things like the Textured Carousel Busy Box, the Bubble Mania, and the Deluxe Fantastik Fan.

The boys are awake and it is pumpkin carving time. But speaking of them, Josiah is starting to potty train and is doing a swell job of it. They got rocking chairs off of free cycle the other day and are loving them.

Yes, and the title of the blog. Back to school. I am going to be starting Certified Nurse Aide classes on the 4th of November and lasting for 2 weeks from 8 to 4. I hear this should not be too challenging, but it will allow me to become a CNA down at Childrens Hospital to make some extra money. It is also the first step towards getting my LPN when both Richard and I are ready. Talk to you soon. God bless!

Please pray for:

Mom and dad are very humble. They'll say outright that they don't feel like anybody owes them anything, and it's almost difficult to get an answer of what they still need.

At this point Abigail's care is still being funded by a combination of insurance and other sources. These are the 2 things we could eventually drag out of mom:

1. Clothes for Abigail. At first when they started feeding Abbey from a tube, they had to guess about how many calories she needed. Well, they guessed high to start, and they've been slowly backing off to a more reasonable level. As such, Abbey's outgrown all her clothes, and it's just starting to cool off in Cincinnati. She's now in a size 7 kids.
2. Toys for Abigail. These are a bit specialized. Special needs kids often have special toys that help with development. They had 2 examples. One had what looked like a 4-way joystick-like switch that could input to a sound-making toy via an 1/8th inch cable. They also had the one with a few noise-making/vibrating buttons as I described in an earlier post.
   

If you're interested in helping, please e-mail info@gracegoodday.com, and we'll set things up.

Please pray for:

• Complete healing for Grace, ASAP
  
• Mom and Dad's continued strong marriage
• Extra income/employment for mom/dad
• Continued favor with the organizations funding Grace's medical care
• Wisdom for mom and dad to make the right housing decisions for their family
  

Pictures

Mom's been asking us to post some pictures for a while now.... Here they are:

This was Abigail, about a week after the incident:

This is the happy family last weekend!

This is a closeup of Abigail from that same day over the weekend:

As you can see, she now is able to be free of machines and tubes for a few hours at a time. She still eats from a bag into a tube that goes into her tummy. She has a trach that allows her to breath through her neck, although she often wears a piece of plastic that forces her to breathe through her mouth... She'll periodically cough when that plastic piece is on her, even when there doesn't appear to be anything blocking her airway... almost as if to say "Mommy, do I HAVE to breathe through my mouth? It's SOOOOO much work!"

Visiting Abigail

We were excited to visit Abigail's (Grace's real name is Abigail Grace) family this weekend! We went out to try and refresh them, but we feel like they encouraged us more!

Abigail continues to improve. She's able to open her eyes as well as move her feet, hands, and head. It looks like the doctors have adjusted her food formula so as to control her weight a bit more than before. She can also move her hands on and off of things. She has one toy with a blue plastic plate. If you put Abigail's hand on the plate, the toy will begin vibrating. If Abbey gets tired of the vibrating, she's fully capable of moving her hand somewhere else.

Abbey also has a good sense of what's going on around her. Like a lot of girls, she HATES getting ready in the morning. She frequently wears a sensor hooked up to a machine that in a way acts as her voice. The sensor detects Abbey's heart rate. If something stresses Abbey out, her heart rate will increase, and the sensor will cause the machine to make a series of tones as if to say "Leave me alone, already!" :-) Those tones are a frequent occurance in the morning as Abbey goes through the motions.

They're just about to begin weaning her off of valium, which should help her to become even more responsive!

We were also glad to spend some time with Abigail's mom, dad, and 2 brothers. They live in a modest home, and it's rooms overflow with love. There's a 5 foot wall with openings on both sides that lead from the living room into the kitchen. Abbey's brothers never grow weary of chasing dad and/or mom around that wall. Laughter and life abound in this house in such a way that I'm amazed that the roof can contain it all.

Having maintained this blog for over half a year now, we've had decent head-knowledge of what's been going on, but spending some time there first hand amazed us all the more. They'd never say this themselves, but Abigail's mom and dad are running the equivalent of a pretty involved non-profit organization. They lead a team of medical professionals, occasionally having to confront and correct those who aren't dedicated enough or hopeful enough for Grace's needs. They employ a team of neurologists, doctors and other medical professionals. They also lead daytime and nighttime, and weekend shifts of nurses. They often interact with government organizations, and are well versed in the relevant rules and regulations. They've also done such vast, in-depth interviews and research that from what I can tell, they're probably nearing the level of expertise that a degree would bring.

I've never met any parent, much less a parent of 3 kids who will claim that it's easy. Abigail's care is understandably more involved than that of a typical 3-year old. Granted, there's the occasional frustration of kids asking for boundries in the way that only kids can. Still, this family strikes me as extraordinary.

They never complained.

We stayed there for the better part of a weekend. I feel humbled to have been let in the door.

Abigail Means Wise Woman

Today I was thinking about naming our children. When Richard and I named our three little angels, we always chose a biblical component with significant meaning. As the title of this post says, Abigail means wise woman. Please refer to 1 Samuel 25 for the story. I pray every day that the Lord would restore Abigail to be the wise woman God created her to be. And I believe he is answering that prayer even now.

Last Monday we visited the Perlman Center. It went very well, and as a result Abigail will be starting her Speech and Occupational therapy with them on October 23rd. While we were at the Perlman Center, Abigail turned her eyes or her head to whomever was speaking. We also discovered that Abigail blinks for the answer yes, and holds her eyes open for no. It is great to be able to start an effective form of communication! We also tried several switches and a communication device called a talk back. You pre-record options like, "roll the ball to me", "I'm all done", and "here it comes" and then she uses a switch to select her response. I cannot tell you how excited we are!

We have weaned another medicine, Risperadol, and hope to start weening the Valium after our next doctor visit on the 20th. This should really increase her alertness! We will also have another weigh in at that time to see how the change in formula has effected Abigail's growth. Thank you, by the way, to those of you who sent Abigail some new clothes. She is definately a girly girl, and loves new clothes!

In other news, Levi is walking around and gets into everything. Josiah is a talker and as his grandmother says has, "Great Verbal (Berbal) skills". Richard and I have been having a lot of discussions about me getting a job a couple of nights a week to add to our income and get out of the house for a little adult time. We had considered nursing, since I can work for Abigail and stay at home, but the schooling (18 months nights) is just not an option right now. So I may explore going back to the lab (since that is my degree anyway and I love it!). Please keep us in your prayers as we consider what is best for our family and which direction the Lord would have us go.

Maybe I can try to get some pictures and post them next time. Happy Saterday everyone!

Lollipop, Lollipop!

As I write this blog, Richard is out walking with the boys, and Abigail and I are sitting here eating lollipops. Hers is chocolate flavored, and mine is bubble gum. Yum! Richard has taken a saw and a hatchet with him to cut down a tree laying on a path they like to walk. Boys will be boys!



This week has been busy but good. Apex is almost finished building the wheelchair ramp, and it looks great! Medicaid waiver program has approved our request for a vehicle modification, and we should know which provider will be completing the job early next month. This will make our trip home to Minnesota over New Years much more comfortable. Abigail has an appointment with the Perlman Center next Monday to assess her skills and determine which programs may be beneficial to her. As I mentioned before, they are well versed in technology for switches and communication devices. Aside from being an awesome opportunity for Abigail, it will provide some one on one time for me and the boys, while she and her nurse attend the program one or two days each week.

Abigail seems to be tolerating her new formula well, and we look forward to her next weigh in on the 20th of October to see if it is effectively curbing the weight gain.

I have been doing a lot of thinking and praying, and one of the questions I ask myself is what is the meaning of life? What are we to accomplish while we are here? I feel like the 2 answers that I usually arrive at are 1) To come to know God as your personal saviour and friend, and 2) To bring others to a saving knowledge of him. I feel like Abigail is very blessed in that she has already accomplished both of these, and some of us spend our entire lives having accomplished neither. Abigail once said to me, "Mommy, Jesus loves me so much." And I said thats true, dear. And she said, "Yeah, he doesn't yell at me as much as you do." How about kids to be totally honest!

Before I go tonite I wanted to share with you some scripture that is my continuous prayer: Ephesians 3:16-19 I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge -- that you may be filled to the measure of all the fullness of God.

Amen.

Continued...

Also, Abigail is becoming better and better at holding her head up. She can do it even while getting bumped and jostled by the boys. fShe loves to cuddle and is learning how to hug. Please join with us in praying that she will be holding her own head up by the time we are ready to start working with a stander, sometime early next year.

Abigail continues to work with her hands and demonstrate that she can intentionally push buttons to play with toys. We are still looking into switch toys to give her back some control over her life. Hopefully, this will also be an option for communication devices in the not too distant future.

Our biggest challenges right now are weight gain and recertification for therapies. Abigail was just switched to a new formula, and we will revisit the doctor in about a month to see if there has been any improvement. Does anyone have any 7/8 girls clothes? Regarding therapies, it seems like they are sometimes having difficulty recertifying us, saying there has not been enough progress. We are currently taking a different approach and have applied to the Perlman Center to see if we may have more success here.

We would love to hear Abigail's sweet voice again, so please keep that in your prayers. So far, we have only heard a few accidental vocalizations which she attempts to reproduce, so far without success.

The boys are awake. Off I go.

All Things Are Possible With God

Hello Everyone. I want to begin by saying how much Richard and I appreciate and have been encouraged by this blog. It has been wonderful to know that you are praying for us, sometimes when we feel unable to pray for ourselves. It is also a huge blessing to see your uplifting comments consistently. We feel privledged to have you walk along side us in this unexpected, but wonderful journey with our precious Abigail.

I also want to say a very big thank you to our dear friends, Tim and Melissa, who have taken time out of their busy lives to do this for us. Melissa has been a great listener at whatever hour of the night an ear was needed.

The update on Abigail! Abigail continues to progress. When I reflect on where we began, we have come a LONG WAY! ALL things are possible with God! Abigail is becoming increasingly alert as we remove medications that were necessary while she was still storming. We have not had a storm in about 3 months, and we don't expect them to come back! Praise God!

Welcome, Mom!

It's been about 6 months since Grace had her good day, and we have a special announcement to make!

Mom has asked to participate in this blog!

We it was our pleasure to be there when the family needed it most and we're proud to be friends of such loving parents!

It's been a lot of fun keeping you posted on Grace's progress! Thank you for all your continuing prayers and support for Grace and her family!

God bless!

-Jose

Continued progress

Grace continues to make a lot of great progress, although as of late it's more difficult to point to something and say "she did this today!!!"

Grace is still on a gamut of medications for various things. The storming is pretty much a memory at this point, which is a HUGE thing to praise God for! Medications that affect Grace's alertness continued to be weaned slowly but surely.

Mom is doing some investigating into switches and special need toys. This would allow Grace to be reinforced for some of the actions she is currently doing. The library near the hospital actually allows families to check out special needs toys just like books. Mom is experimenting with them to see which ones work best for Grace.

Mom still holds firm to the fact that Grace's recovery is not complete. She does believe that Grace will be completely healed except for one area such as sight or being confined to a wheel chair. This has been Mom's feeling for a while and she feels that the one obvious area of difference will draw people to Grace. This will result in Grace being able to tell her story of the amazing God she serves and of course of all of you who have been praying SO diligently for her!

Please Pray For:

• Complete healing for Grace
• Wisdom where to apply funding and resources the family has been given
• Wisdom in choosing the best people for Grace's medical care
• Continued signs of progress to encourage the family daily
• Financial Support (If you are interested in this area please e-mail info@gracegoodday.com)

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)
  

Day by Day

There is not much to report as of late. Mom's mom (grandma) has returned home after a three week stay. Mom and Dad have ruled out one alternative treatment as not the best thing for Grace at this point.

Grace has not made any new progress lately, but continues to hold steady. She had her first long stretch of storming the other day. She had not had this serious storming for over a week and a half.

Please Pray For:

• Complete healing and restoration for Grace
• Wisdom for how to balance all the family has to juggle at this point
• Financial Provision (If you are interested in this area please e-mail info@gracegoodday.com)

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)

Home Sweet Home

I did get to talk to Mom today, but it was a very brief conversation. Grace is home. Discharge from the hospital occurred in half an hour which is unheard of in the medical world! Grace has had a day of storming and high heart rates.

Mom is exhausted and the weekends are when the family is without nurses. Mom was gearing up for being up with Grace tonight. Thankfully, one of Grace's nurses was short on hours so she is coming for a while tomorrow during the day.

That is all I know for now.

Please Pray For:

• Complete healing and restoration
• Storming to cease
• Rest for the family
• Financial Provision (If you are interested in this area please e-mail info@gracegoodday.com )

Did not hear from Mom today

I did not get a call from Mom today. This does not surprise me considering there was a strong possibility of Grace coming home today which makes for one busy day. I hope to hear from her tomorrow.

Open hands...

Grace had a rough of storming today which delayed her discharge from the hospital. Apparently, she would have been allowed to go home despite the storming, but Mom felt that it was best to bring her home in a relaxed state which makes sense.

Grace is holding both hands open now rather than with a clenched fist. This may seem like a small step, but it shows improvement.

In a previous post I mentioned that Grace is right next door to another little girl who was in a similar condition as Grace. It has been a great encouragement to Mom to see this little girl's progress. This little girl now hums when happy and growls when upset. This little girl finger painted with her Mom today. She still has a ways to go, but it is exciting to see how God is working in her life!


Please Pray For:

• Smooth transition from hospital to home
• Storming to cease
• Complete healing and restoration
• Strong and united marriage
• Financial Provision (If you are interested in helping in this way please e-mail info@gracegoodday.com.)
  

Possible Discharge Today

Grace had a chest x-ray yesterday and it showed improvement in her lungs already. Her vitals continue to improve.

Mom had a good conversation with Grace's main doctor about her concerns and some misunderstandings. The conversation made mom feel like the doctor and her were defintely on the same page. This was an answer to prayer!

Grace's room is right next the little girl we spoke of in previous posts who has a similar condition to Grace. Mom was able to go out to lunch with this little girl's grandmother yesterday.

Yesterday, Mom said there was a strong possibility for discharge today.

Please Pray For:

• Praise for a doctor who understands Mom's concerns
  
• from the hospital at God's timing
• Strong and united marriage
• Complete healing and restoration
• The boys as they rotate caregivers during this hospital stay
• Rest for the family

On the mend

Grace is showing improvement since being on the antibiotics. Her heart rate is beginning to return to her normal baseline. Her breathing is still labored, but that is due to pneumonia. She had what mom said a "normal" storming episode.

Dad spent the morning with Grace and Mom will begin spending her morning/afternoons at the hospital again while the boys are being cared for elsewhere. Thank you for all those of you who have been so generous of your time to care for the boys during this time.

There is some tension with the doctors on Grace's case which needs some prayers. Both the doctors and Mom/Dad are trying to do what they believe is best for Grace and sometimes what each party sees as best for Grace is conflicting.

Please Pray For:

• Complete healing and restoration
• Quick recovery from pneumonia
• Quick hospital stay in order for Grace to return back home
• Understanding between Dad/Mom and the doctors
• United and strong marriage for Dad and Mom
• The boys during another round of different caregivers while Grace is in the hospital
• Financial Provision (If you are interested in helping in this way please contact info@gracegoodday.com)

Schedule Issues

Grace had a better day today. She is on antibiotics that are starting to take effect.

Tonight's challenge was that the doctors don't want to keep to the regimen of medicines that mom and the nurses had worked out while Grace was at home. The storming was beginning to lessen under that regimen, and as such mom is very hesitant to change anything.

As of now, the length of Grace's hospital stay is still undetermined.

Please pray for:

• Complete healing and restoration for Grace
• A strong, united marriage for mom and dad
• Financial Provision (If you are interested in this area please contact info@gracegoodday.com)

Return to the Hospital

Grace is back at the hospital tonight. She hasn't been able to breathe normally for a few days and her heart rate and temperature have been spiking. Upon returning to the hospital, she has been diagnosed with pneumonia.

Mom is spending the night at the hospital with Grace.

Please pray for:

• Complete healing and restoration for Grace
• A strong, united marriage for mom and dad
  

No update tonight

I did not hear from Mom tonight. I am sure I will hear from her tomorrow morning.

Just Not Herself

According to Mom, Grace has not been herself since her storming episode on Sunday. Her heartrate continues to be higher than normal and fevers continue to occur. Several tests have been done to rule out infections. All the tests have come back with no sign of infections. This obviously is frustrating because there is no way to know how to help Grace with these symptoms without knowing what is causing them. Mom was going to take Grace in tonight to the hospital for a chest x-ray to see if there was anything abnormal in that regard.

Mom and Dad continue to adjust to having Grace home and all that involves. They are really enjoying their new home. This is the first place that they have lived where they feel like they may be a while. They would like to thanks the many friends who have helped make their house feel like home.

Please Pray For:

• Complete restoration and healing on Grace's brain and body
• Revelation of what is going on in Grace's body to cause a high heart rate and the fevers
• Strong and united marriage for Dad and Mom
• Financial Proivision (If you are interested in this area please contact info@gracegoodday.com)

Post Delayed

Mom and I were unable to catch eachother tonight. I hope to catch her early tomorrow.

Busy, but good

Grace's day today was busy but good. She went to her check up today and everything was ok. It turns out that the fever was only observed once and dissipated after a dose of medicine.

Mom had an exciting day of filling out paperwork. Organizations (government and otherwise) helping pay for Grace's care understandably require consistent communication as a condition of the funding. It's necessary, but it still takes time and when multiplied by several organizations it can add up.

Grace enjoyed her graciously donated bean-bag tonight!

Please pray for:

• Grace's heart rate to return to normal
• An end to storming once and for all
• A strong united marriage
• Financial provision (If you are interested in this area please contact info@gracegoodday.com)

Prayers Needed

Mom called with a quick update for tonight. Grace has had a rough day today. She is currently not storming, but her heart rate is high along with a fever. They thought it may possibly be a urinary track infection, but that has been ruled out. The next step would be to see if it is a respiratory infection. Mom is asking for prayer that they can keep her comfortable until her doctor's appointment tomorrow. They would like to avoid a hospital visit.

Mom is very thankful for every one's thoughtfulness and generosity. A bean bag chair was brought over today along with special dresses/outfits for Grace to Velcro in the back and fit around her trach.

Please Pray For:

• Praise for an excellent doctor for Mom to communicate with about her concerns
• Prayer for her heart rate to return to normal
• Prayer for her fever to disappear
• Prayer for infection to leave her body
• Prayer for storming to cease once and for all
• Prayer for a strong united marriage
• Prayer for financial provision (If you are interested in this area please contact info@gracegoodday.com)

First trip to church

Grace had a rough day today of storming. She continues to be on a fairly predictable schedule of storming. Dad and Mom were able to go to church today. This was an awesome accomplishment for the family.

The night nurse comes tonight to give the family some much needed rest from being on watch 24/7 all weekend. Grace's heart rate is higher than Mom is comfortable with and Mom said she would be contacting the doctor soon to try to regulate this rather than taking her in.

Thank you for everyone's generosity. The need for a bean bag chair has been filled!

Please Pray For:

• Praise for the family attending church today
• Praise for the need of a bean bag chair being met
• Prayer for storming to cease once and for all
• Prayer for a strong and united marriage
• Prayer for financial provision (If you are interested in helping in this area please contact info@gracegoodday.com for more info.)

Communication

Today was the first day the family was without a nurse's assistance. It was a busy day balancing all of the family's needs. Grace continues to show encouraging signs that she is fighting past all of this. Today she started clicking her tongue on the roof of her mouth. Mom described her interaction with Grace as similar to talking to a baby cooing. Mom said that it was as if Grace was trying to communicate, "hey Mom - its me!"

It is the family's goal to make it to church tomorrow, but that will all depend on how the evening and morning goes. Grace is in a pretty consistent storming pattern and according to the pattern she is due to storm tomorrow. But, we serve a God bigger than patterns. We are praying that the pattern is broken once and for all tonight.

I try to ask the family a few times a week if there are any specific needs I can put out on the blog. The current "want" (mom says it isn't a need :) ) is for some sort of bean bag chair. The family is just trying to have options for Grace to be in different positions. If you have one of these please e-mail info@gracegoodday.com.

Please Pray For:

• Praise for Grace's communication
• Praise for an awesome day time nurse
• Prayer for storming to cease allowing the family to attend church WITH Grace for the first time since the incident
• Prayer for strength and unity in Dad and Mom's marriage
  
• Prayer for financial provision (If you are interested in helping in this area please e-mail info@kucejko.com.)
  

Grace Abounds

Today was a good, but rough day.

First, an editors note. Mom did NOT take Grace to the mall while she was storming yesterday. I misunderstood that - my bad. However, she did storm most of the day today. Her heart rate also went up on the high side of the spectrum, which concerned mom.

Mom is really appreciating the help of Grace's day nurse. The nurse has some personal experience with family trauma, as well as a history of working with drowning victims who blew past all the doctor's wildest expectations. Needless to say, the time with her has been encouraging.

Mom is realizing that the rough time of the day seems to be between 3pm and 6pm. Why? Because that's when all at once dad isn't quite home from work yet, Grace needs care and her brothers can be fussy.

Someone dropped off a baby monitor today!!! Wow! What a huge blessing!

Please pray for:

• Grace's complete restoration
• Financial provision for the family
• Grace's blood pressure to calm down
• Praise for the baby monitor!
  

Something Different

Grace is home, and adjusting to new surroundings. She stormed a bit today. For 10 weeks, the prevailing wisdom has been to leave her in bed and let her storm it out. Today mom and the home-care nurse opted to go to the mall instead figuring "what could it hurt?" Grace continued storming for much of the time at the mall, but upon coming home she took a nap as if the activity caused her to tire out and stop storming sooner.

All in all, it's a wonderful blessing to have Grace at home. It's so much of a relief to be able to care for Grace AND her brothers all at once, and it means much more time with the family and less money spent on gas. The relief is very easy to pick out of Mom and Dad's tone of voice.

Mom and dad are still getting settled in their new home, slowly putting pictures on the walls and such. They like their home very much, and their relationship with the day-nurse started off very well! What's more, by some sheer "coincidence" mom and dad live next door to a part time nurse who cared for Grace her first night in ICU and 2 doors down from the mother of a child with cerebral palsy.

Grace has been very accustomed to laying in bed for the last 10 weeks or so. One thing that mom and dad thought might make for a good change of pace is for Grace to sit in a bean bag. If anybody has an extra one lying around or comes across one at a Garage sale sometime, mom and dad would be up for acquiring one. Mom also mentioned that she would feel better at the new house with the addition of a baby monitor. If someone were to assist there it would also be helpful. Please contact info@gracegoodday.com if you can help with either of these.

Please pray for:

• A continued successful transition
• Grace's complete restoration
• Financial provision for the family (info@gracegoodday.com if you're interested in helping)
  

Missed eachother today...

Mom and I were not able to touch base today. By the time I got her voice mail message it was too late to call. I didn't want to risk waking them up - I imagine sleep is extremely important at this time.

Update #2 for Monday

Grace is home safe and sound! It was a stressful day for mom. The equipment company was supposed to send someone over to set up all the machines for Grace's homecoming and that did not happen. Mom was left to figure it out with only being able to ask questions of them over the phone while the boys were obviously wanting her attention.

Grace did not storm on her way home, but her oxygen level has been lower than normal. Grace's oxygen level has been near perfect for quite sometime and reached some lows today that Mom has not seen. Mom has put her on oxygen as a precaution and will talk to the doctor more about it tomorrow.

Mom is still battling red tape with getting all of Grace's needs supplied. But, the main thing is that Grace is home with her family.

The oldest brother is showing excitement that Grace is home and Mom even read his bedtime stories in Grace's room today. The family is finally ALL together for the first time in months and Mom says that is a very good feeling.

Mom and Dad want to say how much they appreciate all your prayers, support and help. Right now the family needs to focus on being a family and working on figuring out how everything is going to work. Therefore, this is not a good time for visitors or a whole bunch of phone calls. The best way to communicate to the family at this point is through comments on the blog or cards sent to the home. The best way to help the family is to continue to stand with them in prayer and faith that Grace IS healed! Mom said that she will communicate when the family is ready for help with specific needs.

Please Pray For:

• Praise for Grace being home!
• Praise for a nurse coming tonight at midnight
• Prayer for Grace's oxygen level to return to normal
• Prayer for transition for the boys
• Prayer for complete restoration of Grace's body
• Prayer for financial provision (If you are interested in helping in this way please contact info@gracegoodday.com)

Prayer Needed (Morning Update)

Hello! For those of you who didn't read the blog last night - there is a post from late last night, but I wanted to post before tonight due to prayer need. So most of you get 2 posts to read today!

Mom called me this morning asking for prayer. She was up last night vomiting several times. She did not have a fever. She did not know what it is. She is determined to NOT let it stop them from bringing Grace home. Please PRAY that the vomiting and the feelings of sickness will be taken away immediately.

She is currently on her way to drop the kids off and then on to the hospital to do some last minute things before discharge.

She did report that they still do not have a nurse for the day today, but the insurance has approved a nurse to come at 11pm and will stay overnight until 7am. Mom is relieved that she will be able to get some rest!

I think we have found a boom box! Thank you!

Please Pray For:

• Praise for a night nurse tonight
• Praise for Grace coming home today
• for Mom's "flu" like symptoms
• Prayer for everything to fall into place easily and quickly for discharge
• Prayer for safe travel for Grace and the family home
• Prayer for a smooth transition to home

Let's make Grace's homecoming even sweeter! Please comment if you read this blog tonight or tomorrow. Let's continue to show the family we are standing behind them. I believe the most comments that have been posted as of date on the blog in one day is 17. Let's beat it and show the family we are in this for the long haul! We will not waver in our faith! If for some reason you are having trouble commenting feel free to send your comment to info@gracegoodday.com and I will post it for you! Maybe, Mom and Dad will have a chance in the next few days to read all these comments to Grace off of the blog!

Tomorrow is the big day...

Grace comes home tomorrow! Mom and Dad continue to work hard to get everything done in order for the homecoming to go smoothly. Her brothers are anxiously awaiting her arrival also.

Dad's 24 hours stay went well although Grace stormed during the majority of it. Mom looked at the positive side and reported that at least she got her storming out of the way so most likely there would not be storming on the way home or her first day home.

Interestingly enough, their insurance does not cover nursing care for the day that a patient is discharged. So Dad and Mom will be on their own tomorrow. Dad is going into work and working a full day in order to continue to support the family financially. Mom will bring the boys to a sitter and then go to the hospital to go through the discharge process.

Thank you for all those willing to help with the TV request. Well, I asked the family today if there were any other items that would be helpful. Mom said that a boom box with a CD player would be a blessing to have in Grace's room so they could play music for her. Mom has been playing praise and worship music along with kid's bible songs in her room at the hospital. So, if you happen to have a spare boom box/CD player laying around please e-mail info@gracegoodday.com.

Please Pray For:

• Praise for Mom and Dad's successful 24 hour stays
• Praise for Grace returning home tomorrow
• Praise for the house getting unpacked and in order
• Prayer for discharge to go smoothly
• Prayer for safe car ride home for Grace
• Prayer for smooth transition for Grace to being at home with the family
• Prayer for the boys and their adjustment to Grace coming home
• Prayer for financial provision (If you are interested in this area please e-mail info@gracegoodday.com)

Let's make Grace's homecoming even sweeter! Please comment if you read this blog tonight or tomorrow. Let's continue to show the family we are standing behind them. I believe the most comments that have been posted as of date on the blog in one day is 17. Let's beat it and show the family we are in this for the long haul! We will not waver in our faith! If for some reason you are having trouble commenting feel free to send your comment to info@gracegoodday.com and I will post it for you! Maybe, Mom and Dad will have a chance in the next few days to read all these comments to Grace off of the blog!

Last minute touches...

Mom and Dad are exhausted from preparing for Grace to return home, but still chugging along. Mom was busy getting the last minute touches on Grace's room when I spoke with her. She is making the room as bright and cheery as possible for Grace.

Mom had a great 24 hour shift caring for Grace. The night was a little rough due to storming. Mom did get to take Grace on a walk and get her out in the sun a bit today which Grace seemed to enjoy. Dad is currently in the midst of his 24 hour stay. There was not much else to report on Grace for today.

Thank you to those who offered a TV - the family has been blessed with one, but appreciates everyone's willingness to help!

Please Pray For:

• Praise for God providing a TV for Grace's room
• Praise for Mom's 24 hour stay
• Praise for Grace's homecoming on Monday
• Prayer for a smooth transition home
• Prayer for the boys transitioning to this change
• Prayer for strong relationships with the nurses that care for Grace
• Prayer for complete restoration for Grace
• Prayer for rest on Sunday (Mother's Day)
  

24 hour stay

Mom was in the middle of her 24 hour stay when we had our conversation. It was amazing to hear the energy in her voice! She had done all the care for Grace thus far and was energized and raring to go the last home stretch of her stay at the hospital.

Mom has noticed that the storming seems to begin at bed time and last usually until the next morning. Interestingly enough, that is the time family is NOT with Grace. Mom is starting to conclude that Grace's absence of storming may be linked to the fact that family is present.

Dad and Mom continue to prepare for Grace's homecoming. Thanks to friends the house is quickly getting in order. Mom commented how nice it was to return home to blinds that were up on the windows.

Red tape is plentiful and Mom continues to tear through it by her persistence. Everything thus far is on schedule for Grace to return home on Monday as planned.

Grace had a simple procedure regarding her G-tube today and one of the nurses present asked to speak to Mom. She then shared how her brother had drowned at a young age and their family's fight for his life and healing. This conversation ended up being such a blessing to Mom! It is amazing the individuals God puts in your path!

The family is in need of a small color TV for Grace's room. The purpose of the TV would be for the nurses. They want to make the atmosphere in Grace's room accommodating, comfortable and welcoming to the nurses so the good nurses stay :) If you have an extra TV laying around and are interested in donating this to the family please contact info@gracegoodday.com. We would ask that you e-mail us rather than call the family due to the family needing to focus every minute of their attention on preparing for Grace to come home.

Please Pray For:

• Praise for divine connections
• Praise for Grace's homecoming on Monday
• Praise for Mom's 24 hour stay going smoothly
• Praise for the energy in Mom's voice
• Prayer for complete restoration for Grace
• Prayer for Dad's 24 hour stay tomorrow
• Prayer for the right weekend/night nurse for the family
• Prayer for financial provision (If you are interested in this area please contact info@gracegoodday.com).
  

MORE boxes....

Dad got to spend the day with Grace today while Mom manned the fort at home. Dad reported that Grace did storm some today, but had stopped before he left the hospital this evening. Mom spent her day watching MORE boxes fill up her new home. The boxes contained a months worth of supplies to take care of Grace. The social worker also stopped by to check out the house and all went well.

Dad is taking the next couple of days off of work in order to get in the rest of his necessary training before the big homecoming on Monday!

Mom is so excited to have Grace back at home and again talked about how it will be the best Mother's Day gift ever!

The boys are having a little bit of a rough time due to not getting as much attention as usual. Although this is for a season, it is tough on Mom to see how this is directly affecting them.

Please Pray For:

• Praise for Grace's Homecoming on Monday
• Praise for supply delivery and social worker walk through went successfully
• Prayer for Grace's complete restoration
• Prayer for storming to cease
• Prayer for Grace's brothers as they receive a little less attention during this transition
• Prayer for Dad and Mom's 24 hour hospital stay
• Prayer for financial provision (If you are interested in this area please e-mail info@gracegoodday.com for more information).

New Spaces

The family took in a baseball game tonight as a brief rest before the rest of the week arrives.

Grace had a good day today. After storming much of yesterday, she appeared mellow and a bit tired today.

Mom and dad stayed up late last night working on their home in preparation for Grace's arrival. In addition to getting the home set up, finding new spaces for everything, and caring for Grace's 2 always-active brothers, Mom and Dad both have to do a 24-hour period at the hospital caring for Grace. Mom is planning hers on Friday, while Dad will go on Saturday.

Grace's new bed will arrive at the family home on Saturday, in addition to a slew of social worker visits, doctor consultations, and other events to check off the list in the days to come.

Sunday will hopefully be a day of rest for the family before Grace arrives home next Monday.

As mom said, "what a great mothers day gift to have Grace home!"

Temporary Technology Blip

Hello Everyone! We apologize for our lack of posting the last few days. We have been in the middle of a move in addition to losing the use of a cell phone and the use of the Internet for a couple of days. But we are back on track now though! Thank you for your patience and understanding.

Mom and I finally got to catch up today after playing phone tag for a while. First, she wanted to thank everyone so much for all their help with their move. They are loving their new rental home! They are excited to get settled before Grace returns home.

Mom and Dad have been very busy moving and preparing for Grace's homecoming. She is scheduled to come home on Monday! WOW! Before that point, Dad and Mom need to finish up their training to care for Grace and do a 24 hour stay at the hospital.

Mom has been busy cutting through massive red tape with all sorts of people. She sounded very upbeat despite all the red tape though. She is SO excited to have Grace coming home so soon!

Grace has had on and off days as of late. She stormed all day yesterday and was completely worn out today after a day or storming. The doctors are beginning to give her medication right when the storming starts rather than waiting until it gets out of control.

By the way Mom and Dad did get a fridge and lawnmower - thank you to all those who offered to help with this need!

Please Pray For:

• Praise for a successful move
• Praise for a fridge and a lawnmower
• Praise for beautiful rental home
• Prayer for storming to cease
• Prayer for complete healing and restoration for Grace
• Prayer for red tape breakthroughs :)
• Prayer for financial provision (If you are interested in helping in this area please e-mail info@gracegoodday.com)

Thank you for all those who read this blog faithfully! The family appreciates your continued prayers and words of encouragement on the blog!

We interrupt this blog...

We are sorry to report that we weren't able to connect with Mom and Dad tonight.

We happen to be moving about the same time they are, and couldn't make it happen.

We hope to get an update tomorrow.

Thanks for your understanding!

Day Nurse For Grace

Mom spent another calm day with Grace today. I was mistaken in the last post - she did not meet with Medicaid today. She met with who will be Grace's day nurse when Grace comes home. She will be there five days a week and a night nurse is still in the works. Mom got to ask the nurse some questions and one of the questions Mom asked was how long she stays with a specific patient. This nurse has stayed with previous patients for years. We are praying for healing to be seen in the natural before that point, but it was a relief to Mom to know this nurse was committed for the long haul.

The financial aid department at children's is incredible according to Mom and has helped the family figure out all the details for bringing Grace home from the financial perspective. They have had to go through an awfully lot of red tape as you can imagine.

Mom and Dad continue to learn things in order to take care of Grace at home. They will be learning CPR soon which is one of the last big things that they need to accomplish before bringing her home.

Tomorrow, Mom plans to bring the oldest son to the hospital to visit Grace and then go to the zoo with both boys.

The move continues to be scheduled for Saturday. If you are in the area and would like to help I am sure they would very much appreciate it!

Please Pray For:

• Praise for another calm day
• Praise for time with the boys tomorrow
• Praise for the financial aid department at children's
  
• Praise for a consistent day nurse for Grace
• Prayer for ceasing in storming permanently
  
• Prayer for smooth move
• Prayer for financial provision (Please e-mail info@gracegoodday.com if you would like to help in this area).
  

Grace switched up her storming pattern a bit last night. She stormed last night for 12 hours rather than the typical 18-24 hours, but she went less time in between storming episodes. Mom and Dad are trying hard not to over analyze things and to be thankful for every step forward. Due to the storming last night Grace was asleep most of the time Mom was at the hospital today. One new development is that Grace is showing signs of startling at the sound of a clap.

During Mom's prayer time today the Holy Spirit prompted her to look up verses with "wake up" in it. She did not have her concordance with her, but she did find one verse in Ephesians. Ephesians 5:14 "for it is light that makes everything visible. This is why it is said: "Wake up, O sleeper, rise from the dead, and Christ will shine on you."

Mom is still recovering from her surgery. She was busy pulling wall paper border off walls and doing the laundry that seems to pile up while I was talking to her. Packing continues and the move is still scheduled for this Saturday.

Please Pray For:

• Praise for a shorter storming episode
• Praise for the Holy Spirit guiding Mom to verses
  
• Prayer for Mom's meeting with Medicaid tomorrow
• Prayer for Grace's complete recovery
• Prayer for a smooth move on Saturday with NO rain
• Prayer for financial provision (If you are interested in helping in this way please e-mail info@gracegoodday.com)