Today we spent the better part of our day at Children's Hospital doing a routine trache scope. This is done every 6 months, just to make sure everything looks good for the trache internally. The neat thing is that our ENT specialist actually goes to our church and is willing to pray with patients prior to any procedure. That said, Abigail looks good, maybe just a small amount of irritation at the bottom of her trache . This could be from people sticking the suction catheter too far down (we will need to revisiting using the measuring increments to avoid this). This could also be a result of the reflux of her tube feeds (acidic juices don't belong in the trachea!). But it does not look too alarming at this point, just something to make note of.
After doing some thinking, and considering the above information, we have decided to back off of the boluses a little bit. We are going to do 5 a day at a only 150 mls and the rest on tube feed overnight. This will hopefully decrease the agitation, increased secretions, and reflux we have been seeing more and more following a bolus. I think her tummy just needs a little more time to adjust to the increased volume, so we are going to back off and take it a little slower. Also, she is so agitated that we are unable to use the passi-mier following a bolus, and this sets her back in vocalization and removing the trache. I think that is more important at this time than bolusing! But I know we will get there!
Thank you to good friends who were willing to spend time with my boys today while I cared for Abigail. They had a great time. Until next time...
Friday, January 16, 2009
Thursday, January 15, 2009
Adonay, Abigail's Deliverer
I have now worked 2 CNA shifts, and the second was much easier than the first! I actually had some sit down time which I used to do some well needed bible study. I am working through a book about the names of God, and this particular night I studied Yahweh/Adonay. This name literally refers to God as our Deliver. This is the name that the Israelites came to know God by when he delivered them from slavery in the book of Exodus. And how appropriate, since he literally delivered Abigail from death in that ER. Abigail is a miracle, there is no other explanation. She was under water for 30 minutes. Then clinically dead for 2 hours (no breathing or heart rate). Pastor Jeff and my husband began to pray OUT LOUD in the emergency room, Lord, you raised Lazarus from the dead. We believe that you still do miracles today, please, give us our daughter back. Within 30 seconds of that prayer, the nurse said, I have a pulse. Adonay, Abigail's deliverer.
This brings me to my second point: Why did God choose to act in Exodus, or in that hospital room? The Israelites were crying out. Richard and I and our Pastor cried out. God's power is released when we pray and ask. What do you need to ask for today?
Praise God, the infection that seemed to linger several weeks in this house in finally gone! I think a few of my nurses may have brought it home, please keep them in your prayers. Abigail is now not using the pump at all, she gets 6 boluses a day, and that covers all of her formula. The only negative is that at least half of the time when we give a bolus she gets agitated and has a lot more secretions, so as a result it is difficult to use her passi-mier. So we may have some setbacks in vocalization and ultimately removing her trache. Just pray for us to know the right thing to do. We visit the rehab doctor next Thursday and will know more about the hip situation at that time.
Thanks for reading. Talk to you soon.
This brings me to my second point: Why did God choose to act in Exodus, or in that hospital room? The Israelites were crying out. Richard and I and our Pastor cried out. God's power is released when we pray and ask. What do you need to ask for today?
Praise God, the infection that seemed to linger several weeks in this house in finally gone! I think a few of my nurses may have brought it home, please keep them in your prayers. Abigail is now not using the pump at all, she gets 6 boluses a day, and that covers all of her formula. The only negative is that at least half of the time when we give a bolus she gets agitated and has a lot more secretions, so as a result it is difficult to use her passi-mier. So we may have some setbacks in vocalization and ultimately removing her trache. Just pray for us to know the right thing to do. We visit the rehab doctor next Thursday and will know more about the hip situation at that time.
Thanks for reading. Talk to you soon.
Wednesday, January 7, 2009
Hide and Seek
Hello everyone. I hope you all had a wonderful Christmas season, celebrating the birth of our Lord and Saviour. We had a nice trip home to Minnesota. Abigail did well in the car (a total of 12 hours one way). She was a little bit more agitated and required oxygen and bi-pap on the way to Minnesota, but our time there and the trip home was for the most part uneventful. The grandparents loved spending time with the children, and vice verse. I was a little tired, not having a nurse on the trip with us and doing all of her care (overnights, in particular). It reminds me of how much I appreciate my overnight nurses, and all of the work that they do!! My mother in law and sister in law were both very helpful with the boys, keeping them out of the way every morning so that I could give Abigail her bath and therapy. We will look forward to our next visit.
Abigail, Josiah, and Levi received many wonderful gifts. I wanted to say thank you to those who sent gifts for Abigail, she now has a handful of toys that she can play with too. The boys received a museum membership from a friend, which we will use often. Really, thank you, you are all too kind. We are very grateful.
Abigail is almost done with her feeding pump, and everyone cheered! One less thing to charge at night and carry around with us. We are now bolusing 190 mls four times a day, so in 3 more days we will have reached our goal of 20o mls. At that time we need to add in 2 more boluses a day, and should be done. We should also be able to eliminate the J-tube, and go to strictly a G-tube. I just need to to talk to the doctor about our final plan. After that, I think we can continue to work on some med weans, namely the Valium and Labetolol. These will both probably be slow, but that is okay.
Please pray for this infection that seems to be lingering in my house. Abigail seemed fine for a handful of days, but now it is flaring up again. She is very agitated (high heart rate) and is having low grade fevers off and on. This would not be a big deal, but we have been trying to get her to kick this for about 3 weeks now. This is the stuff that tends to slow us down on boluses and med weans, since we don't like to make changes when she is already upset. If we do and there is a problem, it is difficult to know whether the agitation should be attributed to the changes we are making or the illness.
Also, please pray for guidance in some big decisions we have coming up. We just did x-rays and learned that Abigail's left hip is 50% dislocated and her right hip is 100% dislocated. I am in the process of having discussions with my physical therapist and rehabilitation doctors to make a plan. I will keep you all posted so that you can pray accordingly. She does not seem to be in any pain. We think that they have been this way for quite some time, as a result of the storming and tone. It may affect our plans for getting her in a stander, though. Hard to stand if your hips are dislocated.
And now for the title of the blog, Hide and Seek. Abigail is really doing a lot with her speech these days. We are working a lot on sucking with her pacifier, and she has started to move her tongue and move towards this reflex. She is also doing a lot more of turning her eyes and head toward voices, especially mom and dad. This is a huge step for her.
Lastly, I am doing my first overnight CNA shift tonite from 7 to 7. I am a little nervous being that it is my first time and all, but I am sure all will go well. Wish me luck!
Abigail, Josiah, and Levi received many wonderful gifts. I wanted to say thank you to those who sent gifts for Abigail, she now has a handful of toys that she can play with too. The boys received a museum membership from a friend, which we will use often. Really, thank you, you are all too kind. We are very grateful.
Abigail is almost done with her feeding pump, and everyone cheered! One less thing to charge at night and carry around with us. We are now bolusing 190 mls four times a day, so in 3 more days we will have reached our goal of 20o mls. At that time we need to add in 2 more boluses a day, and should be done. We should also be able to eliminate the J-tube, and go to strictly a G-tube. I just need to to talk to the doctor about our final plan. After that, I think we can continue to work on some med weans, namely the Valium and Labetolol. These will both probably be slow, but that is okay.
Please pray for this infection that seems to be lingering in my house. Abigail seemed fine for a handful of days, but now it is flaring up again. She is very agitated (high heart rate) and is having low grade fevers off and on. This would not be a big deal, but we have been trying to get her to kick this for about 3 weeks now. This is the stuff that tends to slow us down on boluses and med weans, since we don't like to make changes when she is already upset. If we do and there is a problem, it is difficult to know whether the agitation should be attributed to the changes we are making or the illness.
Also, please pray for guidance in some big decisions we have coming up. We just did x-rays and learned that Abigail's left hip is 50% dislocated and her right hip is 100% dislocated. I am in the process of having discussions with my physical therapist and rehabilitation doctors to make a plan. I will keep you all posted so that you can pray accordingly. She does not seem to be in any pain. We think that they have been this way for quite some time, as a result of the storming and tone. It may affect our plans for getting her in a stander, though. Hard to stand if your hips are dislocated.
And now for the title of the blog, Hide and Seek. Abigail is really doing a lot with her speech these days. We are working a lot on sucking with her pacifier, and she has started to move her tongue and move towards this reflex. She is also doing a lot more of turning her eyes and head toward voices, especially mom and dad. This is a huge step for her.
Lastly, I am doing my first overnight CNA shift tonite from 7 to 7. I am a little nervous being that it is my first time and all, but I am sure all will go well. Wish me luck!
Wednesday, December 24, 2008
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?
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?
Saturday, December 13, 2008
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...
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...
Friday, November 21, 2008
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.
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.
Tuesday, October 28, 2008
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..."
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..."
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