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.
Monday, October 20, 2008
Saturday, October 11, 2008
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!
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!
Thursday, October 2, 2008
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.
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.
Friday, September 26, 2008
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.
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!
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!
Wednesday, September 24, 2008
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
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
Sunday, September 14, 2008
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:
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)
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