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..."
Tuesday, October 28, 2008
Saturday, October 25, 2008
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.
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!
Monday, October 20, 2008
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:
Please pray for:
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:
- 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.
- 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.
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!"
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 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.
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.
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