Josh saw Dr. M on Friday. His glaucoma and vision is stable, no changes. Praise God!
But his right eye continues to do an upsweep when he looks to the left. Dr. M started to look through Josh's chart to review his previous eye muscle surgeries, but realized that he only had chart II, not chart I. Josh's chart is so thick that it had to be divided into two volumes! Dr. M said he needed to go to the archives to get the other volume, and would take some time to review it.
We had a different ped ophth for a very short time, a couple years ago, who was closer to where we live, but he was not experienced with children with PHPV, so we went back to Dr. M. Unfortunately, we allowed this other doctor to do an eye muscle surgery on Josh. Dr. M had to fix the damage to Josh's eye, as well as correct the problem the other doctor was supposed to have fixed.
Depending on what this other doctor did, will affect if Josh's current eye muscle problem can be fixed.
Waiting is not an easy thing for me. But I am now waiting for Dr. M to call me to tell me if Josh's eye muscle problem is fixable, or if he will just have to learn to live with it. It is dificult for me to know how to pray in this instance. I want Josh to have optimal vision, and that would mean being able to fix this eye muscle issue. But I dread more surgery, I dread more anesthesia, I dread seeing my little guy once again suffer post-op pain.
Sunday, December 4, 2011
Monday, November 7, 2011
Homeschooling Update
Life has been busy here in the shoe. We have been plugging away with our homeschooling. My days are full with homeschooling seven children!
Jesse, my second grader, is doing well with reading. He eagerly brings books to read to me. Math is another story. It is more work for him. He would rather do the things that come easy, and skip those things that take time and effort. Pretty typical for all of us!
Josh, my first grader, who has the eye problems, is doing well, too. He is my only south paw, and that has been interesting. He is reading well, and sometimes thinks he is in a competition with Jesse. Some days he cries because Jesse is ahead of him.
Seth is my fourth grader. He is doing well, is really beginning to bloom as a student. He likes to work outside with his daddy on the weekends, and enjoys seeing how things work. And he LOVES dinosaurs!
Aaron is doing well with his school work, after his big ordeal last summer. He still creates ways to get out of work, so I would say he is back to his former self:)
Sarah is a freshman this year. She is enjoying being a bit more independent with her work. She has a heart for learning and desires to be a speech and language pathologist someday. She is in the process of starting her own ministry. She is selling handknitted hats and other items, to raise money for more yarn. With the yarn she buys, she is knitting hats to send to an orphanage in eastern Europe. She hopes to someday go and work with the children there, but for now, she sends them her love in the form of hats.
(The items she sells are mostly made of handspun wool, which is not good for donating to places where handwashing would not be an option. The would quickly end up with unusable hats. Thus, the selling of items to buy yarn.)
Bethany is a junior this year. She is one of my artsy ones and is working toward an arts honor diploma. She is getting quite good with her drawing. She also enjoys knitting, but is not driven the way her sister is. Bethany is learning to drive, which has proved to be quite interesting for her dad!
Christopher is my preschooler. We are doing a K4 program that is especially for children with T21. We just started this level and are working on getting a feel for the program, and getting organized. Currently, he is learning more sight words, and attempting to put them together to form very simple sentences. He is learning to match the names of himself and family members to their pictures. He enjoys this. We then use the names with the sight words in sentences. I have noticed this helps Christopher attempt to say words he otherwise would not. He is able to say his own name now! Well, the nickname we call him: Topher. I love the joy he has when he has accomplished something new!
In math, Christopher is working with learning his colors. We are doing all sorts of "red" things now. Red hearts, red ladybugs, red playdough, finding red clothing in story books. He is counting to 5 and stacking blocks, and doing sequencing with the blocks.
His muscle tone in his hands is quite low, so we are squeezing putty balls, and poking playdough to help strengthen and give better control. Holding crayons and pencils can be a challenge to little hands that have low muscle tone.
Trinity is my little toddler girl. She is busy playing and developing her speech and other skills. When we work with Topher with his speech, she is by his side, saying all the words we are trying to get him to say. They laugh together and fight together. She has passed him in speech, which we knew would happen. In many ways, they are like having twins, they are so close in development right now. I know this will change, as Trinity speeds into the next stage, and Christopher enjoys taking his time and savors the moments.
Jesse, my second grader, is doing well with reading. He eagerly brings books to read to me. Math is another story. It is more work for him. He would rather do the things that come easy, and skip those things that take time and effort. Pretty typical for all of us!
Josh, my first grader, who has the eye problems, is doing well, too. He is my only south paw, and that has been interesting. He is reading well, and sometimes thinks he is in a competition with Jesse. Some days he cries because Jesse is ahead of him.
Seth is my fourth grader. He is doing well, is really beginning to bloom as a student. He likes to work outside with his daddy on the weekends, and enjoys seeing how things work. And he LOVES dinosaurs!
Aaron is doing well with his school work, after his big ordeal last summer. He still creates ways to get out of work, so I would say he is back to his former self:)
Sarah is a freshman this year. She is enjoying being a bit more independent with her work. She has a heart for learning and desires to be a speech and language pathologist someday. She is in the process of starting her own ministry. She is selling handknitted hats and other items, to raise money for more yarn. With the yarn she buys, she is knitting hats to send to an orphanage in eastern Europe. She hopes to someday go and work with the children there, but for now, she sends them her love in the form of hats.
(The items she sells are mostly made of handspun wool, which is not good for donating to places where handwashing would not be an option. The would quickly end up with unusable hats. Thus, the selling of items to buy yarn.)
Bethany is a junior this year. She is one of my artsy ones and is working toward an arts honor diploma. She is getting quite good with her drawing. She also enjoys knitting, but is not driven the way her sister is. Bethany is learning to drive, which has proved to be quite interesting for her dad!
Christopher is my preschooler. We are doing a K4 program that is especially for children with T21. We just started this level and are working on getting a feel for the program, and getting organized. Currently, he is learning more sight words, and attempting to put them together to form very simple sentences. He is learning to match the names of himself and family members to their pictures. He enjoys this. We then use the names with the sight words in sentences. I have noticed this helps Christopher attempt to say words he otherwise would not. He is able to say his own name now! Well, the nickname we call him: Topher. I love the joy he has when he has accomplished something new!
In math, Christopher is working with learning his colors. We are doing all sorts of "red" things now. Red hearts, red ladybugs, red playdough, finding red clothing in story books. He is counting to 5 and stacking blocks, and doing sequencing with the blocks.
His muscle tone in his hands is quite low, so we are squeezing putty balls, and poking playdough to help strengthen and give better control. Holding crayons and pencils can be a challenge to little hands that have low muscle tone.
Trinity is my little toddler girl. She is busy playing and developing her speech and other skills. When we work with Topher with his speech, she is by his side, saying all the words we are trying to get him to say. They laugh together and fight together. She has passed him in speech, which we knew would happen. In many ways, they are like having twins, they are so close in development right now. I know this will change, as Trinity speeds into the next stage, and Christopher enjoys taking his time and savors the moments.
Thursday, October 13, 2011
Canning Day
My oldest daughter, Crystal, came over on Tuesday. We canned 22 quarts of applesauce. Crystal made cranberry sauce, too. That is the pretty red jars.
So much fun!
We plan to make some applebutter and more sauce next week.
Plastic Surgeon Appointment
Aaron saw the plastic surgeon at the wound center yesterday. He said Aaron has a keloid at his wound. This basically scar tissue that has gone crazy.
The plan is to have Aaron apply moiturizer, such as cocoa butter or olive oil, to soften and hopefully flatten the area a bit. He is also to stay off the area as much as possible. If it continues to bother him, there is the possibility of removing some of the excess scar tissue. Otherwise, they prefer to leave it alone.
I am having Aaron massage coconut oil on the area a couple times a day. Coconut oil is a good moisturizer and very healthy for the skin. Smells good, too:)
The plan is to have Aaron apply moiturizer, such as cocoa butter or olive oil, to soften and hopefully flatten the area a bit. He is also to stay off the area as much as possible. If it continues to bother him, there is the possibility of removing some of the excess scar tissue. Otherwise, they prefer to leave it alone.
I am having Aaron massage coconut oil on the area a couple times a day. Coconut oil is a good moisturizer and very healthy for the skin. Smells good, too:)
Friday, October 7, 2011
Oysters on a Half Shell
I was at the grocery store on Tuesday, when my cell phone rang. It was Allura, my 19yo daughter. She asked me if I could come get her at work. When I asked her why, she said she had sent me a text, hadn't I read it? No, I don't always feel my cell phone vibrate to alert me of text messages.
Allura was having an allergic reaction. She had eaten a sample cup of oyster soup at work. Allura is very allergic to shell fish, but she said she did not know oysters are shell fish! Currently, she is working in the food industry, so I would have thought she would know that oysters are shell fish! She has had reactions to crab, and to glucosamine and chondroitin, which comes from shell fish, in the past. When she consumes shell fish, her throat gets itchy, she gets short of breath, and her heart races and skips beats.
She was in her car, and wanted me to come get her. I tried to convince her to go back into the store and have one of her co-workers take her to the emergency room. She told me she would be fine, her friend, Miles, was coming to get her, he was only 10 minutes away. Later, she admitted she was too weak to walk, that is why she didn't go back in. If Miles was coming to get her, did she still want me to come? "yes, I need you to come, Mom". That scared me, my independent daughter!
The grocery store was about 45 minutes drive from Allura's place of work. I called her a couple times to see how she was. I instructed her to call me when Miles got there, and that he was to take her around the corner to the Urgent Care Center.
After about another 10 minutes and no return phone call, I called her again. This time, she was not answering the phone. I was in a panic. I envisioned her dying in her car, with no one there to help her! So, I called 911 and had them dispatch and ambulance. I continued to try to get her on her cell phone. After a few more attempts, she answered and said Miles was there, and was taking her to Urgent Care. I called 911 and had them cancel the ambulance. I heard later they ambulance had been circling the parkinglot looking for her car.
I was still a good 10-15 minutes away from Urgent Care. When I pulled into the parkinglot, Miles, whom I had never met, was nervously pacing the waitingroom, watching for us. He had such a look of relief when he saw the big blue van pull in. Allura agreed with me later, that he had been watching for us, and he admitted to being relieved when I showed up:)
The doctor had already given Allura a shot of prednisone in her butt, and a shot of benadryl in her upper arm. She was in the process of a nebulizer treatment when I walked in.
They kept her for a while afterward, to make sure she would not have a rebound reaction. When they discharged her, she was doing well, but still weak.
She came over for supper last evening, still not feeling well. She had not taken the oral steroid. The doctor told her she did not need to take it *if* she felt better. But she was not feeling better! Teenagers!! She was still short of breath and weak.
She got a lot of good natured teasing from the rest of the family about "not knowing oysters are shell fish"! She thought she just needed to avoid the crustations, not the ones on shells, like oysters and clams! We told her we think she should stick to land critters. She told me she had planned to have Miles just take her home, not to Urgent Care! Oh, my!
Allura is my independent girl. She likes to do things herself, not be spoiled and pampered. Likes to be just left alone when she is not feeling well. But she wanted her mom, she needed me. That is a good feeling. I will remember that the next time she is spurning my desire to baby her. I will secretly smile, knowing she still needs me to love her:) I could have done without the crisis though.
After the past few weeks, I think I need to see if they make industrial strength hair color! I doubt I have a hair on my head that still has natural color! Thankfully, Allura is a good hairdresser!
Allura was having an allergic reaction. She had eaten a sample cup of oyster soup at work. Allura is very allergic to shell fish, but she said she did not know oysters are shell fish! Currently, she is working in the food industry, so I would have thought she would know that oysters are shell fish! She has had reactions to crab, and to glucosamine and chondroitin, which comes from shell fish, in the past. When she consumes shell fish, her throat gets itchy, she gets short of breath, and her heart races and skips beats.
She was in her car, and wanted me to come get her. I tried to convince her to go back into the store and have one of her co-workers take her to the emergency room. She told me she would be fine, her friend, Miles, was coming to get her, he was only 10 minutes away. Later, she admitted she was too weak to walk, that is why she didn't go back in. If Miles was coming to get her, did she still want me to come? "yes, I need you to come, Mom". That scared me, my independent daughter!
The grocery store was about 45 minutes drive from Allura's place of work. I called her a couple times to see how she was. I instructed her to call me when Miles got there, and that he was to take her around the corner to the Urgent Care Center.
After about another 10 minutes and no return phone call, I called her again. This time, she was not answering the phone. I was in a panic. I envisioned her dying in her car, with no one there to help her! So, I called 911 and had them dispatch and ambulance. I continued to try to get her on her cell phone. After a few more attempts, she answered and said Miles was there, and was taking her to Urgent Care. I called 911 and had them cancel the ambulance. I heard later they ambulance had been circling the parkinglot looking for her car.
I was still a good 10-15 minutes away from Urgent Care. When I pulled into the parkinglot, Miles, whom I had never met, was nervously pacing the waitingroom, watching for us. He had such a look of relief when he saw the big blue van pull in. Allura agreed with me later, that he had been watching for us, and he admitted to being relieved when I showed up:)
The doctor had already given Allura a shot of prednisone in her butt, and a shot of benadryl in her upper arm. She was in the process of a nebulizer treatment when I walked in.
They kept her for a while afterward, to make sure she would not have a rebound reaction. When they discharged her, she was doing well, but still weak.
She came over for supper last evening, still not feeling well. She had not taken the oral steroid. The doctor told her she did not need to take it *if* she felt better. But she was not feeling better! Teenagers!! She was still short of breath and weak.
She got a lot of good natured teasing from the rest of the family about "not knowing oysters are shell fish"! She thought she just needed to avoid the crustations, not the ones on shells, like oysters and clams! We told her we think she should stick to land critters. She told me she had planned to have Miles just take her home, not to Urgent Care! Oh, my!
Allura is my independent girl. She likes to do things herself, not be spoiled and pampered. Likes to be just left alone when she is not feeling well. But she wanted her mom, she needed me. That is a good feeling. I will remember that the next time she is spurning my desire to baby her. I will secretly smile, knowing she still needs me to love her:) I could have done without the crisis though.
After the past few weeks, I think I need to see if they make industrial strength hair color! I doubt I have a hair on my head that still has natural color! Thankfully, Allura is a good hairdresser!
Insult to Injury, or Injury to Insult
Aaron came to me on Monday to ask me to look at the healed wound on his butt. This is the large pressure wound that was caused by the edge of the board the doctors had underneath him during the resuscitation in July. The last little bit of scab had finally healed about 2 weeks ago.
The area, about the size of my fist, had developed a raised, red area in the center, about 1 inch by 1/2 inch, painful and warm to the touch. I emailed our doctor right away, and he called a prescription over to our pharmacy, with instructions to start it imediately, in case it was MRSA.
By Tuesday it was looking worse, so I made an appointment to have it looked at by the doctor. He wanted me to keep an eye on it, and continue the medication.
Aaron was outside playing football last evening, with his brothers and sisters. He decided to try to tackle Bethany. Somehow, he managed to fall on one of the beams we have edging our parking area. He hit his butt, right across the tailbone area. He hit so hard that he was winded, and saw black spots, or as he called them, black blobs.
He got up this morning barely able to walk, and sitting caused him a lot of pain. I gave him ibuprofen and called our doctor. By the time we went in, the ibuprofen was working nicely. But I wanted the doctor to see his wound again, since it had some changes since earlier in the week. It has developed a red spot in the middle of the raised area, that looks thin and ready to break open.
The doctor agreed with my assessment, and has decided to send Aaron to a wound care specialist. He wants the plastic surgeon to have a look and decide if the wound needs opened up to remove any infected tissue, and if it needs some of the scar tissue removed. He said he has seen a lot of pressure sores, but has never seen one look like this after it has healed. We have an appt. next week. In the meantime, Aaron is to continue taking his antibiotic and ibuprofen. He is also to avoid rough housing and other activities that could cause more injury to the area.
The area, about the size of my fist, had developed a raised, red area in the center, about 1 inch by 1/2 inch, painful and warm to the touch. I emailed our doctor right away, and he called a prescription over to our pharmacy, with instructions to start it imediately, in case it was MRSA.
By Tuesday it was looking worse, so I made an appointment to have it looked at by the doctor. He wanted me to keep an eye on it, and continue the medication.
Aaron was outside playing football last evening, with his brothers and sisters. He decided to try to tackle Bethany. Somehow, he managed to fall on one of the beams we have edging our parking area. He hit his butt, right across the tailbone area. He hit so hard that he was winded, and saw black spots, or as he called them, black blobs.
He got up this morning barely able to walk, and sitting caused him a lot of pain. I gave him ibuprofen and called our doctor. By the time we went in, the ibuprofen was working nicely. But I wanted the doctor to see his wound again, since it had some changes since earlier in the week. It has developed a red spot in the middle of the raised area, that looks thin and ready to break open.
The doctor agreed with my assessment, and has decided to send Aaron to a wound care specialist. He wants the plastic surgeon to have a look and decide if the wound needs opened up to remove any infected tissue, and if it needs some of the scar tissue removed. He said he has seen a lot of pressure sores, but has never seen one look like this after it has healed. We have an appt. next week. In the meantime, Aaron is to continue taking his antibiotic and ibuprofen. He is also to avoid rough housing and other activities that could cause more injury to the area.
Tuesday, October 4, 2011
Constant Changes
When our second child left the shoe in August, we began discussing the sleeping arrangements in our household. We had an empty room, and needed to move some beds around.
Our plan was to move Bethany and Sarah into Allura's old room. It is slightly larger than the one they had been sharing, and it is one of the two bedrooms that has usable closets. And, we planned to move Trinity into the girls' room. But there was disagreement, so we put off the moving. The bedroom sat empty these many weeks. Well, not quite empty, Allura still had a lot of clothes in there, and the bed she slept in was there. The empty bed came in handy the nights our oldest came to stay. It was a blessing to be able to offer her a quiet place to rest.
Bethany did not want to move, and she did not want to stay in her current room alone. She enjoys being with others, and tends not to like change. So, Sarah moved over to Allura's old room alone. And Bethany chose to share her bedroom with Trinity.
Last night was the first time Trinity slept in her new bedroom. Until now, she had been in my bedroom, first in the bassinet, which she really did not sleep in, and then in the portacrib. We brought the real crib down from the attic over the weekend and put it together. We finally put sheets on it yesterday.
I went to bed, last night, for the first time in 2 1/2yrs, without my baby girl in the room with me. My calculations are not off, she will be 2yo in December, but before her birth, she was very much sleeping in the same room with me:) I was very torn about it, I laid awake for quite a while, listening for her, ready to run upstairs and bring herr back down with me. But she slept all night, is still sleeping peacefully at 9:30am.
So, it looks like my next project is to fold up the portacrib, and put it away, and rearrange my bedroom. Bethany is not the only one who has difficulty with change:(
Our plan was to move Bethany and Sarah into Allura's old room. It is slightly larger than the one they had been sharing, and it is one of the two bedrooms that has usable closets. And, we planned to move Trinity into the girls' room. But there was disagreement, so we put off the moving. The bedroom sat empty these many weeks. Well, not quite empty, Allura still had a lot of clothes in there, and the bed she slept in was there. The empty bed came in handy the nights our oldest came to stay. It was a blessing to be able to offer her a quiet place to rest.
Bethany did not want to move, and she did not want to stay in her current room alone. She enjoys being with others, and tends not to like change. So, Sarah moved over to Allura's old room alone. And Bethany chose to share her bedroom with Trinity.
Last night was the first time Trinity slept in her new bedroom. Until now, she had been in my bedroom, first in the bassinet, which she really did not sleep in, and then in the portacrib. We brought the real crib down from the attic over the weekend and put it together. We finally put sheets on it yesterday.
I went to bed, last night, for the first time in 2 1/2yrs, without my baby girl in the room with me. My calculations are not off, she will be 2yo in December, but before her birth, she was very much sleeping in the same room with me:) I was very torn about it, I laid awake for quite a while, listening for her, ready to run upstairs and bring herr back down with me. But she slept all night, is still sleeping peacefully at 9:30am.
So, it looks like my next project is to fold up the portacrib, and put it away, and rearrange my bedroom. Bethany is not the only one who has difficulty with change:(
Monday, October 3, 2011
Observing Faces
I like to look at faces of people. When I am out and about, I enjoy looking at faces, especially the eyes and mouths. I like to see if they look friendly, troubled, grouchy, etc.
Lately, I have been noticing something rather interesting. When I go out in public with Christopher, he gets noticed.....a lot. I can tell by the faces of others how they percieve people with disabilities, and more specifically, my son.
Some of the faces show that the person does not see the disability, only the amazingly cute little boy with blond hair and blue eyes. Some of the faces show they are repulsed by his features, or, perhaps it is just the fact that he is who he is, that repulses them. Some faces show pity, for him, for me.
Some of the faces are able to quickly cover the initial reaction to seeing the little boy with Down Syndrome. Usually, this is by fixing an artificial smile, where the scowl had been.
I have been taking mental notes on the ages of the people and their reactions to my son. Even noting the gender of the onlookers. What I may say next may surprise some people.
I have noticed that young men, in their late teens and early twenty's seem to be the most accepting of my son. They frequently smile at him and more often than not, interact with him in some way. They do not seem to notice the characteristic facial features, or seem to care. Christopher initiates interaction and they respond in a positive way.
The next age/gender group that stands out to me are the women who are in their 30s and 40s. They look at Christopher with sadness, and then look at me with pity in their eyes. I meet their gaze openly with a smile and "hello". I hope in our brief encounter I have given them a glimpse of reality, that I do not desire or need their pity because my child has an extra chromosome. They have looked into Christopher's smiling face, and then into my smiling face, hopefully, they understand our unspoken communication.
The next age and gender group is the tough one. This group consists of older men, age 60 and above. Many of these men will look at my son with repulsion. Some with contempt. Some will then lift their eyes to mine, and I give them a smile and greeting. Many will avoid eye contact with me, like they somehow think they know a secret about my son and don't want to reveal it. Or maybe they are are repulsed by the fact that not only do I dare keep my son, but I also take him on outings, with the rest my children.
I have to remind myself that it was during the lifetime of this last age group that people began keeping their children with disabilities at home. Prior to this, the so-called experts convinced parents that their children with Ds were too much work, had no potential for a productive life, took too much out of the parents and away from the other children in the family, they just were not worth the effort. So, they placed them in institutions to be "cared" for by professionals and paid attendants. Thes children lived up, or down, to their expectations. They did not learn, they were never able to lead productive lives, and they even had a shortened life span. Is it any wonder that many of the people in this age group still carry the misconception that people with Ds have no hope for learning and life? that they will be adults sitting in their own filth, unable to even go to the toilet?
How do we overcome the mindset of these older people? People with Ds have been demonstrating for decades that they can and do learn, they can find meaningful jobs, they can have friendships, and they can be independent, productive people. Yet, the mindset continues. Do we just wait, and bide our time until there is no one alive that remembers the evil days of institutionalizing children just because they have an extra chromasome? Do we try to educate these people when we have an opportunity? Do we expose our children to them and their close-mindedness, in hopes that they will be won over by the freindliness and unconditional love for which our children are well known?
I don't have the answers to those questions. But I plan to continue taking my son out and about, and letting him smile and interact with others. I plan to continue living my life and enjoying it. Perhaps people observing us will have a heart change, if not, well....I plan to continue living my life and enjoying it!
****Please note, I do not consider all people of certain ages/gender to be a certain way. I was generalizing. I have encountered some young men who have been not so pleasant, and some older men that have enjoyed talking to my son and me. I only wish to share my observations.
****Older men can have a change of heart. My very own father was close-minded regarding people with disabilities, until his grandson won him over!
Lately, I have been noticing something rather interesting. When I go out in public with Christopher, he gets noticed.....a lot. I can tell by the faces of others how they percieve people with disabilities, and more specifically, my son.
Some of the faces show that the person does not see the disability, only the amazingly cute little boy with blond hair and blue eyes. Some of the faces show they are repulsed by his features, or, perhaps it is just the fact that he is who he is, that repulses them. Some faces show pity, for him, for me.
Some of the faces are able to quickly cover the initial reaction to seeing the little boy with Down Syndrome. Usually, this is by fixing an artificial smile, where the scowl had been.
I have been taking mental notes on the ages of the people and their reactions to my son. Even noting the gender of the onlookers. What I may say next may surprise some people.
I have noticed that young men, in their late teens and early twenty's seem to be the most accepting of my son. They frequently smile at him and more often than not, interact with him in some way. They do not seem to notice the characteristic facial features, or seem to care. Christopher initiates interaction and they respond in a positive way.
The next age/gender group that stands out to me are the women who are in their 30s and 40s. They look at Christopher with sadness, and then look at me with pity in their eyes. I meet their gaze openly with a smile and "hello". I hope in our brief encounter I have given them a glimpse of reality, that I do not desire or need their pity because my child has an extra chromosome. They have looked into Christopher's smiling face, and then into my smiling face, hopefully, they understand our unspoken communication.
The next age and gender group is the tough one. This group consists of older men, age 60 and above. Many of these men will look at my son with repulsion. Some with contempt. Some will then lift their eyes to mine, and I give them a smile and greeting. Many will avoid eye contact with me, like they somehow think they know a secret about my son and don't want to reveal it. Or maybe they are are repulsed by the fact that not only do I dare keep my son, but I also take him on outings, with the rest my children.
I have to remind myself that it was during the lifetime of this last age group that people began keeping their children with disabilities at home. Prior to this, the so-called experts convinced parents that their children with Ds were too much work, had no potential for a productive life, took too much out of the parents and away from the other children in the family, they just were not worth the effort. So, they placed them in institutions to be "cared" for by professionals and paid attendants. Thes children lived up, or down, to their expectations. They did not learn, they were never able to lead productive lives, and they even had a shortened life span. Is it any wonder that many of the people in this age group still carry the misconception that people with Ds have no hope for learning and life? that they will be adults sitting in their own filth, unable to even go to the toilet?
How do we overcome the mindset of these older people? People with Ds have been demonstrating for decades that they can and do learn, they can find meaningful jobs, they can have friendships, and they can be independent, productive people. Yet, the mindset continues. Do we just wait, and bide our time until there is no one alive that remembers the evil days of institutionalizing children just because they have an extra chromasome? Do we try to educate these people when we have an opportunity? Do we expose our children to them and their close-mindedness, in hopes that they will be won over by the freindliness and unconditional love for which our children are well known?
I don't have the answers to those questions. But I plan to continue taking my son out and about, and letting him smile and interact with others. I plan to continue living my life and enjoying it. Perhaps people observing us will have a heart change, if not, well....I plan to continue living my life and enjoying it!
****Please note, I do not consider all people of certain ages/gender to be a certain way. I was generalizing. I have encountered some young men who have been not so pleasant, and some older men that have enjoyed talking to my son and me. I only wish to share my observations.
****Older men can have a change of heart. My very own father was close-minded regarding people with disabilities, until his grandson won him over!
Thursday, September 29, 2011
The Little Things
I have moments of fear, from time to time, that I am inadequate when it comes to teaching my son, Christopher, who has Down syndrome. I worry that maybe I am not giving him enough of everything that he needs. Yes, I had those fears with regarding my other children, but nothing to the degree that I do with Christopher. And you know what? I cannot give any of my children everything they need. Only God can do that! God is the one who equips me to do everything he thinks I need to do.
I know that fear does not come from God, it comes from the enemy. I have to keep reminding myself of this fact! God has not given me a spirit of fear.
It is hard, especially when all the books and websites say that I should be sending Christopher to special preschool, PT, OT and ST. Who am I? Just his mom, with no college degree, just my little LPN. I specialize in nothing.
But because I am Christopher's mom, I have have a greater investment of love in Christopher, that no paid stranger could ever have. Because of that love, I keep him busy, working on those gross motor skills. I also help him with activities that will strengthen those tiny muscles to improve his fine motor skills. We sing, we talk, we read books, we counts, we play with blocks, we play with flurp and kazoos.
Many of the little things that I did with my other children, without thinking, are now planned out and done with intent with Christopher.
Christopher can now count to five! He is using many signs and word approximations, and actual words. He is learning to recognize a couple word flashcards, and will say and sign the words. Yes, he is learning to read! Little by little!
Most of my children did not read any words at the age of 4 1/2yo. They could speak clearly, though. Christopher can read a couple words, but cannot speak clearly:)
Christopher is not showing any signs of being ready to potty train, he does not enjoy sitting on the little potty. I am hoping as Trinity begins to potty train that he will want to, as well. In the meantime, he continues to wear his big size 6 diapers.
There are times that I think I should see progress each day, rather than looking for progress over a longer span of time. So, as I look back at the last few weeks, I see things that Christopher has learned, or has fine tuned. Things like being able to string noodles, using a big tapestry needle. He could do that for a while, but lately, he has discovered the best way to hold the needle and can quickly fill the entire string.
Little by little, day by day, he is learning, just like my other children:)
I know that fear does not come from God, it comes from the enemy. I have to keep reminding myself of this fact! God has not given me a spirit of fear.
It is hard, especially when all the books and websites say that I should be sending Christopher to special preschool, PT, OT and ST. Who am I? Just his mom, with no college degree, just my little LPN. I specialize in nothing.
But because I am Christopher's mom, I have have a greater investment of love in Christopher, that no paid stranger could ever have. Because of that love, I keep him busy, working on those gross motor skills. I also help him with activities that will strengthen those tiny muscles to improve his fine motor skills. We sing, we talk, we read books, we counts, we play with blocks, we play with flurp and kazoos.
Many of the little things that I did with my other children, without thinking, are now planned out and done with intent with Christopher.
Christopher can now count to five! He is using many signs and word approximations, and actual words. He is learning to recognize a couple word flashcards, and will say and sign the words. Yes, he is learning to read! Little by little!
Most of my children did not read any words at the age of 4 1/2yo. They could speak clearly, though. Christopher can read a couple words, but cannot speak clearly:)
Christopher is not showing any signs of being ready to potty train, he does not enjoy sitting on the little potty. I am hoping as Trinity begins to potty train that he will want to, as well. In the meantime, he continues to wear his big size 6 diapers.
There are times that I think I should see progress each day, rather than looking for progress over a longer span of time. So, as I look back at the last few weeks, I see things that Christopher has learned, or has fine tuned. Things like being able to string noodles, using a big tapestry needle. He could do that for a while, but lately, he has discovered the best way to hold the needle and can quickly fill the entire string.
Little by little, day by day, he is learning, just like my other children:)
Saturday, September 24, 2011
Another Day Out With Thomas Event
My oldest daughter, Crystal, and I took "our boys" to see Thomas the Tank at the Strasburg Railroad yesterday. I am glad I had left Christopher back at the shoe with Daddy and Trinity, since it poured rain almost the entire time. He would have been miserable, and most likely would have ended up very sick.
Crystal brought her boyfriend, Patrick. On the way there, my boys were making plans about who was going to get to hang out with Patrick the most. I had to remind them that Patrick would probably like to hang out with Crystal the most. They did not think that sounded like much fun. Oh, well, they will understand someday. Patrick fits in well with my sons, a little too well sometimes. It is never a dull moment.
In spite of the rain, we had a good time and were able to ride most rides. Aaron got to have his first experience on the pump car. He and Crystal went on it together. Crystal was very out of breath when they got off the car, Aaron, not so much. Not too bad for a boy who almost died two months ago.
The boys, including Patrick, rode the cranky cars. We also rode the Little Cagney. And of course, the train pulled by Thomas:)
Patrick likes to encourage the boys to make silly faces for the pictures, then he straightens up just as the picture is being taken, leaving, mostly Jesse, the one on the right, to still be making a goofy face.
Aaron, Josh, Patrick, Jesse (with the goofy face) and Seth.
Crystal is completely oblivious to the goofy face Patrick is making. She thinks we deleted this picture:)
He can be serious when he has to be. This is after many attempts for one decent shot. Crystal would not allow him to do the bunny ears behind her head. Such a stick in the mud:)
Crystal brought her boyfriend, Patrick. On the way there, my boys were making plans about who was going to get to hang out with Patrick the most. I had to remind them that Patrick would probably like to hang out with Crystal the most. They did not think that sounded like much fun. Oh, well, they will understand someday. Patrick fits in well with my sons, a little too well sometimes. It is never a dull moment.
In spite of the rain, we had a good time and were able to ride most rides. Aaron got to have his first experience on the pump car. He and Crystal went on it together. Crystal was very out of breath when they got off the car, Aaron, not so much. Not too bad for a boy who almost died two months ago.
The boys, including Patrick, rode the cranky cars. We also rode the Little Cagney. And of course, the train pulled by Thomas:)
Thursday, September 15, 2011
Aaron's EGD
Aaron had the scope put down into his esophagus on Tuesday.
The day started off frustrating. Our van left is sitting after getting gas. Thankfully, a kind man gave it a jump and we were able to pull it out of the entrance of the store parkinglot. But I was leary about driving another 30minutes and having it cause more trouble further away from home. My oldest daughter, Crystal, had plans that fell through that morning, so I called her. She came and got us, and waited with me while Aaron had his procedure done.
When we got into the surgical center, I mentioned that I had discussed with the pre-anesthesia nurse that we were not comfortable with him having Propofal, and she had assured me that there were other options for anesthesia. Well, the anesthesiologist came in and said there weren't really any other options, since it was not in the main hospital. He said that whoever had reviewed Aaron's chart had cleared him for Propofal. He was gracious enough to go searching for something else, but made no promises about finding anything. I sat there, feeling the anxiety rising, feeling like I could not trust them. He returned after a while to tell me he found another medication and we were set. Praise God!
The scope showed that Aaron has strictures at the bottom of his esophagus, consistent with longterm acid reflux. He asked if Aaron had complained about burning or pain in the past. No, never, not until after his illness in July. I have always described Aaron's appetite and eating to that of a rottweiler puppy, gobble it down and look for the next bowl. He also questioned how Aaron was as a baby, less than 1yo, if he spit up a lot. Yes, he was a horrible spitter. He would spit up hours after nursing, and it would be the consistency of sour cream.
The GI doctor thinks what happened is that Aaron has been having reflux, possibly since he was a baby, which caused some scar tissue to build up. Then, when he was sick in July, the excess vomitting, and then the NG tube, caused the scarring to become worse, making the opening more narrow, til it was too small to allow larger peices of food and medication to pass through.
The plan: They will be stretching his esophagus at a later date. They could not do it on Tuesday, since they needed to do biolpsies, to check for eosinophilical esophegitis (which was negative). They also increased the frequency of Prilosec.
We are thankful it was not neurological damage.
The day started off frustrating. Our van left is sitting after getting gas. Thankfully, a kind man gave it a jump and we were able to pull it out of the entrance of the store parkinglot. But I was leary about driving another 30minutes and having it cause more trouble further away from home. My oldest daughter, Crystal, had plans that fell through that morning, so I called her. She came and got us, and waited with me while Aaron had his procedure done.
When we got into the surgical center, I mentioned that I had discussed with the pre-anesthesia nurse that we were not comfortable with him having Propofal, and she had assured me that there were other options for anesthesia. Well, the anesthesiologist came in and said there weren't really any other options, since it was not in the main hospital. He said that whoever had reviewed Aaron's chart had cleared him for Propofal. He was gracious enough to go searching for something else, but made no promises about finding anything. I sat there, feeling the anxiety rising, feeling like I could not trust them. He returned after a while to tell me he found another medication and we were set. Praise God!
The scope showed that Aaron has strictures at the bottom of his esophagus, consistent with longterm acid reflux. He asked if Aaron had complained about burning or pain in the past. No, never, not until after his illness in July. I have always described Aaron's appetite and eating to that of a rottweiler puppy, gobble it down and look for the next bowl. He also questioned how Aaron was as a baby, less than 1yo, if he spit up a lot. Yes, he was a horrible spitter. He would spit up hours after nursing, and it would be the consistency of sour cream.
The GI doctor thinks what happened is that Aaron has been having reflux, possibly since he was a baby, which caused some scar tissue to build up. Then, when he was sick in July, the excess vomitting, and then the NG tube, caused the scarring to become worse, making the opening more narrow, til it was too small to allow larger peices of food and medication to pass through.
The plan: They will be stretching his esophagus at a later date. They could not do it on Tuesday, since they needed to do biolpsies, to check for eosinophilical esophegitis (which was negative). They also increased the frequency of Prilosec.
We are thankful it was not neurological damage.
Saturday, September 10, 2011
Another Birthday!
We celebrated Aaron's 12th birthday today! His birthday was actually on the 7th, but we had his party today. What a blessing to be able to celebrate his day of birth after facing the possiblity of mourning his death. I am in awe of the greatness and power of our God!
On Wednesday Aaron and I sat and looked at his baby pictures. He was such a cute baldy baby. He weighed 8lbs 8oz at birth, and was one of my smaller babies. Before his illness he was always hungry, he never lost weight, as many newborn babies do, but gained right away. After his initial weight, he was always on the large side, or off the top of the growth charts. When I look at him today, my 5'5" son, I am amazed that he was once my tiny son:)
When I think that only a few short weeks ago he was in renal failure and cardiac arrest, and is now almost back to perfect health, I am amazed. We were so close to losing him, and now we are back to chasing him down to do chores and schoolwork again.
Thank-you, Lord, for sparing Aaron's life!
Sorry, not the best pic. My cell phone is picky about lighting, and Aaron seems to blink in every pic lately:)
Sarah, 14yo sister, thought it would be funny to put all those extra pink candles on Aaron's cake. I am surprised it did not set off the smoke detectors when he blew them out!
On Wednesday Aaron and I sat and looked at his baby pictures. He was such a cute baldy baby. He weighed 8lbs 8oz at birth, and was one of my smaller babies. Before his illness he was always hungry, he never lost weight, as many newborn babies do, but gained right away. After his initial weight, he was always on the large side, or off the top of the growth charts. When I look at him today, my 5'5" son, I am amazed that he was once my tiny son:)
When I think that only a few short weeks ago he was in renal failure and cardiac arrest, and is now almost back to perfect health, I am amazed. We were so close to losing him, and now we are back to chasing him down to do chores and schoolwork again.
Thank-you, Lord, for sparing Aaron's life!
Sorry, not the best pic. My cell phone is picky about lighting, and Aaron seems to blink in every pic lately:)
Sarah, 14yo sister, thought it would be funny to put all those extra pink candles on Aaron's cake. I am surprised it did not set off the smoke detectors when he blew them out!
Thursday, September 1, 2011
Ophthalmology Visits
I feel excited to be able to blog about something other than Aaron's illness, even if it is about other children with doctor visits.
Josh, Christopher and Sarah had appointments with Dr. McManaway today.
Sarah was being seen as a follow-up for the corneal abrasion Christopher gave her in June. She is back to normal. He did a complete exam, and does not need glasses. She does not need to go back unless she gets gouged in the eye again:)
Christopher had his annual eye exam. He did well. There has been no change in his vision, not better, but not worse. The nystagmus, however, is gone! He had developed that before he was 1yo, and it is finally resolved.
Josh had a follow-up for his PHPV and aphakic glaucoma. His IOP was stable. He will continue to use his two eye drops for glaucoma. His vision is stable, no changes in his contact lens or glasses prescription. He will continue to patch his left eye two hours each day.
But his right eye is beginning to drift in and up again. We go back in three months for Dr. M to have a look at it again. Somewhere along the line he will probably need another surgery to straighten it, but not yet. (I am not eager to go through another child having anesthesia, so I am happy Dr. M wants to wait a while.)
Trips to Hershey really take a huge bite out of my day, but it is so worth it to have the peace of mind that my children are getting the best care available.
Josh, Christopher and Sarah had appointments with Dr. McManaway today.
Sarah was being seen as a follow-up for the corneal abrasion Christopher gave her in June. She is back to normal. He did a complete exam, and does not need glasses. She does not need to go back unless she gets gouged in the eye again:)
Christopher had his annual eye exam. He did well. There has been no change in his vision, not better, but not worse. The nystagmus, however, is gone! He had developed that before he was 1yo, and it is finally resolved.
Josh had a follow-up for his PHPV and aphakic glaucoma. His IOP was stable. He will continue to use his two eye drops for glaucoma. His vision is stable, no changes in his contact lens or glasses prescription. He will continue to patch his left eye two hours each day.
But his right eye is beginning to drift in and up again. We go back in three months for Dr. M to have a look at it again. Somewhere along the line he will probably need another surgery to straighten it, but not yet. (I am not eager to go through another child having anesthesia, so I am happy Dr. M wants to wait a while.)
Trips to Hershey really take a huge bite out of my day, but it is so worth it to have the peace of mind that my children are getting the best care available.
Some Follow Up
Aaron had an Upper GI with a baruim tablet last week. They wanted to see how his esophagus was functioning. The radiologist was a bit puzzled. The tablet sat at the bottom of the esophagus for 10 minutes before it dropped down into the stomach. There was nothing there to have caused the tablet to not pass right through.
So, that means he will need an EGD on September 13th. He will be under anesthesia for this procedure, so that has me a bit concerned.
Aaron also had blood work done this week. His CBC and BMP were fine. He has completely recovered from renal failure and cardiac issues.
His final Lyme test was negative, like the two previous tests. So, we officially know what did NOT cause Aaron's illness. They mystery of what caused our son to be so seriously ill may never be solved, and remain unknown to all but the One who created him.
Aaron is doing well. We are getting back to "normal" life. He is doing school work, and trying to see how much he can procratinate. Very typical for Aaron:) His sore on his bottom is slowly healing, much better than it was, but not healed yet. So he is enjoying getting to go around in his PJs and boxers when we are home.
He is looking forward to taking his hunter's safety course this fall, and hopefully going hunting for the first time.
Oh, and he is enjoying doing the goofy eyes whenever he wants.
So, that means he will need an EGD on September 13th. He will be under anesthesia for this procedure, so that has me a bit concerned.
Aaron also had blood work done this week. His CBC and BMP were fine. He has completely recovered from renal failure and cardiac issues.
His final Lyme test was negative, like the two previous tests. So, we officially know what did NOT cause Aaron's illness. They mystery of what caused our son to be so seriously ill may never be solved, and remain unknown to all but the One who created him.
Aaron is doing well. We are getting back to "normal" life. He is doing school work, and trying to see how much he can procratinate. Very typical for Aaron:) His sore on his bottom is slowly healing, much better than it was, but not healed yet. So he is enjoying getting to go around in his PJs and boxers when we are home.
He is looking forward to taking his hunter's safety course this fall, and hopefully going hunting for the first time.
Oh, and he is enjoying doing the goofy eyes whenever he wants.
Wednesday, August 24, 2011
Behind the Scenes
While were at duPont Hospital with Aaron, so much was going on at our house.
Our oldest two do not live at home anymore and work full time. Our third child was at summer camp the week we left, and volenteering in the kitchen the following week at the camp. This left our 14yo daughter at home in charge of 5 children, ages 10 and under. If I were only running to the store to pick up bread and milk, this would not have been a problem. But we had no idea how long we would be gone, and it stretched into 1 1/2wks.
The night that Aaron went to duPont, our pastor came to the hospital to be with Gene and I. I found out later that his wife and daughter came to our house to be with the rest of the children.
The next day, the church sent out an email about Aaron's condition. The church was flooded with phone calls. People wanted to know how they could help! The church secretary organized a few days of meals and care for the children. At one point, they had to put a hold on the meals, our refridgerator was bursting at the seams with food. (Of course, Gene and I, and Bethany, were not home, and our biggest eater, Aaron, was not home to eat.)
When the church secretary went on vacation, she enlisted the help of one of the other ladies. This dear lady has five children of her own. Yet she spent much time at our house, mowing the lawn, doing laundry, cleaning, running errands etc. Her oldest daughter spent a couple nights to help with the children.
My children were not alone at night, married women gave up time with their husbands to sleep here on our sofa. Single young ladies gave up their own time to care for my children.
One family came and took my children to their home for the day. They rode horses, and played games. Not only were my children having their basic needs met, they were being loved, and shown fun times.
When I got home, there was a schedule, written in crayon, on my refridgerator door. It kept Sarah informed who was bringing a meal, and who was coming to spend the day and the night. Someone must have known how Sarah likes to be on top of things:) I thought it amusing that it was written in crayon, as that is often all I can find to write with in a hurry at my house.
What a blessing! I praise God for each and every person in our church family that ministered to us. Thank-you Timberline Church!
Our oldest two do not live at home anymore and work full time. Our third child was at summer camp the week we left, and volenteering in the kitchen the following week at the camp. This left our 14yo daughter at home in charge of 5 children, ages 10 and under. If I were only running to the store to pick up bread and milk, this would not have been a problem. But we had no idea how long we would be gone, and it stretched into 1 1/2wks.
The night that Aaron went to duPont, our pastor came to the hospital to be with Gene and I. I found out later that his wife and daughter came to our house to be with the rest of the children.
The next day, the church sent out an email about Aaron's condition. The church was flooded with phone calls. People wanted to know how they could help! The church secretary organized a few days of meals and care for the children. At one point, they had to put a hold on the meals, our refridgerator was bursting at the seams with food. (Of course, Gene and I, and Bethany, were not home, and our biggest eater, Aaron, was not home to eat.)
When the church secretary went on vacation, she enlisted the help of one of the other ladies. This dear lady has five children of her own. Yet she spent much time at our house, mowing the lawn, doing laundry, cleaning, running errands etc. Her oldest daughter spent a couple nights to help with the children.
My children were not alone at night, married women gave up time with their husbands to sleep here on our sofa. Single young ladies gave up their own time to care for my children.
One family came and took my children to their home for the day. They rode horses, and played games. Not only were my children having their basic needs met, they were being loved, and shown fun times.
When I got home, there was a schedule, written in crayon, on my refridgerator door. It kept Sarah informed who was bringing a meal, and who was coming to spend the day and the night. Someone must have known how Sarah likes to be on top of things:) I thought it amusing that it was written in crayon, as that is often all I can find to write with in a hurry at my house.
What a blessing! I praise God for each and every person in our church family that ministered to us. Thank-you Timberline Church!
Tuesday, August 23, 2011
Before Leaving the Hospital
Remember our joke about Aaron arm wrestling a med student?
Well, on our final day at the hospital, we saw one of the PICU doctors in the cafeteria. We laughed that he needed to come up to the peds unit today, or he would miss his chance. The doctor said she would tell him when she got back up to the unit.
A couple hours later, three men came into Aaron's room, one was the med student. He told Aaron, "I hear you've been talking trash". His two friends, residents, wanted Aaron to stand next to the med student to compare height.
I wanted them to get into position, to pose for an arm wrestling picture. But men cannot stop themselves when they are in this position, even 11yo pre-men:) The student did not expect Aaron to be so strong. He told Aaron he will never live it down that an 11yo, who was recovering from a life threatening illness, beat him!! I wonder how many times his friends showed their cell phone videos of the match!
One of the doctors was there the evening Aaron arrived at the hospital, and was involved in his care in those early hours. Gene and I thanked him for what he did to make it possible for us to be taking Aaron home with us again.
Well, on our final day at the hospital, we saw one of the PICU doctors in the cafeteria. We laughed that he needed to come up to the peds unit today, or he would miss his chance. The doctor said she would tell him when she got back up to the unit.
A couple hours later, three men came into Aaron's room, one was the med student. He told Aaron, "I hear you've been talking trash". His two friends, residents, wanted Aaron to stand next to the med student to compare height.
I wanted them to get into position, to pose for an arm wrestling picture. But men cannot stop themselves when they are in this position, even 11yo pre-men:) The student did not expect Aaron to be so strong. He told Aaron he will never live it down that an 11yo, who was recovering from a life threatening illness, beat him!! I wonder how many times his friends showed their cell phone videos of the match!
One of the doctors was there the evening Aaron arrived at the hospital, and was involved in his care in those early hours. Gene and I thanked him for what he did to make it possible for us to be taking Aaron home with us again.
Almost There!
After Aaron's cardiac cath, he was hungry. He was able to advance quickly to a light solid diet. Only some gagging, but no vomitting. Praise God, we had not lost any of our progress.
The next day, the big concern about his activity level was again expressed by the doctors. I pointed out that the PT demanded he not be gotten out of bed, and that she needed to be set straight about the plan. Gene and I also decided the Play Station was not helpful to Aaron, and told them to take it away. Aaron was too comfortable, he did not feel the need to get out of bed.
When the PT came in, she wanted to take Aaron to the therapy room. She said she was thinking about putting him on the tilt table to figure out why he was dizzy. In my opinion, his dizziness was from lying in bed, and Gene and I had determined to start pushing him. We cleared it with the cardiologist, and began. We had him walking the hallway, and sitting in a chair. Amazing the improvement we saw. He was still very weak, and still needed a lot of rest and assistance. But he was going in the right direction.
By the end of the day, they decided to move Aaron to a regular pediatric floor. The diagnostic specialist would now be in charge of his care. His big concern was getting him eating and drinking more, and getting him active. Gene and I continued to push Aaron.
That evening, the neurologist came in to see Aaron. After examining him, and playing some memory games, he determined that Aaron did not have any impairments. He was a bit sluggish with his replies, but nothing that time would not take care of. What happened two nights prior was not concerning to him. He declared he did not expect Aaron to be doing as well as he was. He felt that after Aaron was home, in his own environment, he would be fine. Yes! And that is exactly where we wanted to be! Home!!
The next day, 10 days after this nightmare had begun, we were going home! The day they took Aaron off the vent, I told the social worker that Aaron would not need medical equipment, I was believing for a complete healing. In fact, I beleived he would walk out of that hospital, completely healed! The day Aaron was discharged, Aaron walked out of the hospital! He did not go in a wheel chair, he walked! His heart and kidneys completely healed!
God is Good!!
The next day, the big concern about his activity level was again expressed by the doctors. I pointed out that the PT demanded he not be gotten out of bed, and that she needed to be set straight about the plan. Gene and I also decided the Play Station was not helpful to Aaron, and told them to take it away. Aaron was too comfortable, he did not feel the need to get out of bed.
When the PT came in, she wanted to take Aaron to the therapy room. She said she was thinking about putting him on the tilt table to figure out why he was dizzy. In my opinion, his dizziness was from lying in bed, and Gene and I had determined to start pushing him. We cleared it with the cardiologist, and began. We had him walking the hallway, and sitting in a chair. Amazing the improvement we saw. He was still very weak, and still needed a lot of rest and assistance. But he was going in the right direction.
By the end of the day, they decided to move Aaron to a regular pediatric floor. The diagnostic specialist would now be in charge of his care. His big concern was getting him eating and drinking more, and getting him active. Gene and I continued to push Aaron.
That evening, the neurologist came in to see Aaron. After examining him, and playing some memory games, he determined that Aaron did not have any impairments. He was a bit sluggish with his replies, but nothing that time would not take care of. What happened two nights prior was not concerning to him. He declared he did not expect Aaron to be doing as well as he was. He felt that after Aaron was home, in his own environment, he would be fine. Yes! And that is exactly where we wanted to be! Home!!
The next day, 10 days after this nightmare had begun, we were going home! The day they took Aaron off the vent, I told the social worker that Aaron would not need medical equipment, I was believing for a complete healing. In fact, I beleived he would walk out of that hospital, completely healed! The day Aaron was discharged, Aaron walked out of the hospital! He did not go in a wheel chair, he walked! His heart and kidneys completely healed!
God is Good!!
Cardiac Step Down Unit
Monday morning, the nurses informed us they were moving Aaron to the cardiac step down unit. He no longer needed the care of the PICU. He only needed monitoring, which could be done on the cardiac unit. What a time of rejoicing!
Before the move could take place, Aaron developed high blood pressure. When it went up to 180/110, they gave him medication in his IV, to bring it down. They assured me this would not interfere with the move, as they were quite capable of handling high blood pressure in the cardiac unit.
The move brought good changes in the accomadtions for me. I now had a private bathroom, and did not need to use the one in the hallway. I had a shower, and did not need to go to the third floor to the Parent Resource Center. There was also a washer and dryer on the unit.
A lady came by to bring things to keep Aaron entertained. She brought in a Play Station unit, and games, as well as some Lego kits. Aaron was feeling much perkier, esp. with the chance to play video games.
The cardiologist, who specializes in the electrophysiology of the heart, came in to see Aaron. He said he wanted Aaron out of bed and sitting in a chair. He did not want him to develope an atelectasis from laying in bed.
Right after the cardiologist left the room, the physical therapist came in, and declared she did not want him out of bed. She was not comfortable with the dizziness he was experiencing. Very frustrating!
Aaron continued to use the potty chair, but was in the bed the rest of the day. His eating was still going rough. He continued to have pain when he would eat, and then he would vomit. The infectious disease doctor came in and said he would order something for his tummy.
Yet, hours later, we still did not see anything ordered. When I went to the nurses desk and asked the nurse practitioner, she got defensive, and said she had not heard any complaints of belly pain before. I walked away, rather than get into an argument with her.
The cardiologist came into the room to discuss the misunderstanding. I told him I was frustrated because one person will tell us one thing, and the next will say something completely different. Everyone seemed to agree that Aaron's poor oral intake was slowing his recovery, yet no one would address the reason why his intake was poor. If a child has pain and vomitting when they eat, they will not want to eat.
The cardiologist came up with a plan. He wanted Aaron to try to eat, when the pain started, he was to be given some Mylanta. If that took care of the pain, then he felt certain it was erosion of the esophagus, due to the vomitting and the NG tube. At this point, he would order Carafate to coat and heal the esophagus. It worked well. Now he could begin to eat and get his strength back.
In the process of our descussion regarding Aaron's struggle with food, the cardiologist informed us that the cardiac arrest was, in his opinion, related to the anesthesia, Propofal, they had given him in the PICU! Unbelievable! When I told him I had asked if that had been the cause, they denied it, said it would have happened right away, not 15 minutes after it was started. The cardiologist explained that in certain types of cardiac rhythms, propofal can cause cardiac arrest, asystole. It is incredibly rare, less than 1 in 100,000. So rare, it is not taught to anesthesiolgists, or even to cardiologists. Usually, it is only electrophysiologists, like himself, who know about this.
I was stunned, to say the least! The cardiologist told us that when the Lyme tests came back, he would be able to tell us more. If they were negative, he would lean more toward the Propofal as the cause for the cardiac arrest.
Tuesday morning, the Lyme tests came back negative. We still had no answers as to why our son had gone into renal failure. We had a possible reason as to they the cardiac arrest, even though that was not a definate, just a possibility. The cardiologist ordered a consult with a diagnostic specialist, sort of their version of Dr. House. He was very nice, though.
The diagnostic specialist could not give us any definate answers either. He visited with Aaron twice on Tuesday, looked over the tests, ect. yet could not say for certain what had caused Aaron to be so sick. With Lyme being lower on the probable list, (it still could be a possiblity, and will be retested soon), he was thinking toward toxins.
After such a stress-filled day, I needed out of there. I started walking, and did not stop til I was outside, sitting on the far side of the hospital, leaning up against a huge boulder, and crying. I could not deal with the roller coaster any more. The not knowing what had almost taken the life of our son! I sat there for a long time. If the cardiac arrest was caused by the anesthesia, how could I ever go through another one of our children needing anethesia? how was I going to ever let Dr. McManaway do another exam under anesthesia on Josh? what about when Josh needed surgery for gluacoma in the future? This was affecting the future medical care of all my children!
When I went back in, Gene informed me the cardiologist had been in. He was doing a cardiac cath with EP studies on Aaron the next morning! My fears of anesthesia were going to be faced sooner, as opposed to later!!
It was a very sleepless night for me. During the night, Aaron was referring to himself as "he" and "him", instead of "I" and "me". I felt very disheartened, not only was he going to have to risk anesthesia again, he was showing signs of brain damage!
The next morning, the anesthesiologist came in to explain what he was going to do. I told him "no" he could not use Propofal! He needed to use another medication! I was so distressed, I could not sign the consent forms. When the cardiologist came in, he said they would NOT be using Propofal. But...he wanted to give him a very small dose of it, to see if he had any reaction. He assued me Aaron was going to perfectly safe, nothing bad was would happen to him. (Hmmm, seems I heard that before, on the ride to duPont Hospital!) Another consent form I could not sign. Gene signed the consents, the first he ever has done that with any of our children.
The cardiac cath went well. The cardiologist said had he not known Aaron had been in cardiac arrest 1 week prior, he would not have been able to tell by the look and function of his heart. Praise God!!
After the anguish of the cardiac cath, I was glad we had gone ahead with it. Now I could rest assured Aaron's heart was fine. What a relief!
A visit from Santa in July.
Rudolph! Can you tell Aaron is feeling better in this picture?
Before the move could take place, Aaron developed high blood pressure. When it went up to 180/110, they gave him medication in his IV, to bring it down. They assured me this would not interfere with the move, as they were quite capable of handling high blood pressure in the cardiac unit.
The move brought good changes in the accomadtions for me. I now had a private bathroom, and did not need to use the one in the hallway. I had a shower, and did not need to go to the third floor to the Parent Resource Center. There was also a washer and dryer on the unit.
A lady came by to bring things to keep Aaron entertained. She brought in a Play Station unit, and games, as well as some Lego kits. Aaron was feeling much perkier, esp. with the chance to play video games.
The cardiologist, who specializes in the electrophysiology of the heart, came in to see Aaron. He said he wanted Aaron out of bed and sitting in a chair. He did not want him to develope an atelectasis from laying in bed.
Right after the cardiologist left the room, the physical therapist came in, and declared she did not want him out of bed. She was not comfortable with the dizziness he was experiencing. Very frustrating!
Aaron continued to use the potty chair, but was in the bed the rest of the day. His eating was still going rough. He continued to have pain when he would eat, and then he would vomit. The infectious disease doctor came in and said he would order something for his tummy.
Yet, hours later, we still did not see anything ordered. When I went to the nurses desk and asked the nurse practitioner, she got defensive, and said she had not heard any complaints of belly pain before. I walked away, rather than get into an argument with her.
The cardiologist came into the room to discuss the misunderstanding. I told him I was frustrated because one person will tell us one thing, and the next will say something completely different. Everyone seemed to agree that Aaron's poor oral intake was slowing his recovery, yet no one would address the reason why his intake was poor. If a child has pain and vomitting when they eat, they will not want to eat.
The cardiologist came up with a plan. He wanted Aaron to try to eat, when the pain started, he was to be given some Mylanta. If that took care of the pain, then he felt certain it was erosion of the esophagus, due to the vomitting and the NG tube. At this point, he would order Carafate to coat and heal the esophagus. It worked well. Now he could begin to eat and get his strength back.
In the process of our descussion regarding Aaron's struggle with food, the cardiologist informed us that the cardiac arrest was, in his opinion, related to the anesthesia, Propofal, they had given him in the PICU! Unbelievable! When I told him I had asked if that had been the cause, they denied it, said it would have happened right away, not 15 minutes after it was started. The cardiologist explained that in certain types of cardiac rhythms, propofal can cause cardiac arrest, asystole. It is incredibly rare, less than 1 in 100,000. So rare, it is not taught to anesthesiolgists, or even to cardiologists. Usually, it is only electrophysiologists, like himself, who know about this.
I was stunned, to say the least! The cardiologist told us that when the Lyme tests came back, he would be able to tell us more. If they were negative, he would lean more toward the Propofal as the cause for the cardiac arrest.
Tuesday morning, the Lyme tests came back negative. We still had no answers as to why our son had gone into renal failure. We had a possible reason as to they the cardiac arrest, even though that was not a definate, just a possibility. The cardiologist ordered a consult with a diagnostic specialist, sort of their version of Dr. House. He was very nice, though.
The diagnostic specialist could not give us any definate answers either. He visited with Aaron twice on Tuesday, looked over the tests, ect. yet could not say for certain what had caused Aaron to be so sick. With Lyme being lower on the probable list, (it still could be a possiblity, and will be retested soon), he was thinking toward toxins.
After such a stress-filled day, I needed out of there. I started walking, and did not stop til I was outside, sitting on the far side of the hospital, leaning up against a huge boulder, and crying. I could not deal with the roller coaster any more. The not knowing what had almost taken the life of our son! I sat there for a long time. If the cardiac arrest was caused by the anesthesia, how could I ever go through another one of our children needing anethesia? how was I going to ever let Dr. McManaway do another exam under anesthesia on Josh? what about when Josh needed surgery for gluacoma in the future? This was affecting the future medical care of all my children!
When I went back in, Gene informed me the cardiologist had been in. He was doing a cardiac cath with EP studies on Aaron the next morning! My fears of anesthesia were going to be faced sooner, as opposed to later!!
It was a very sleepless night for me. During the night, Aaron was referring to himself as "he" and "him", instead of "I" and "me". I felt very disheartened, not only was he going to have to risk anesthesia again, he was showing signs of brain damage!
The next morning, the anesthesiologist came in to explain what he was going to do. I told him "no" he could not use Propofal! He needed to use another medication! I was so distressed, I could not sign the consent forms. When the cardiologist came in, he said they would NOT be using Propofal. But...he wanted to give him a very small dose of it, to see if he had any reaction. He assued me Aaron was going to perfectly safe, nothing bad was would happen to him. (Hmmm, seems I heard that before, on the ride to duPont Hospital!) Another consent form I could not sign. Gene signed the consents, the first he ever has done that with any of our children.
The cardiac cath went well. The cardiologist said had he not known Aaron had been in cardiac arrest 1 week prior, he would not have been able to tell by the look and function of his heart. Praise God!!
After the anguish of the cardiac cath, I was glad we had gone ahead with it. Now I could rest assured Aaron's heart was fine. What a relief!
Rudolph! Can you tell Aaron is feeling better in this picture?
The Weekend of Waiting
With Gene home with the rest of the children, I was alone with Aaron for the weekend.
It was slow going, yet encouraging. He was unable to eat, due to the trauma of vomitting, and due to the NG that had been in place. He was making slow progress with taking fluids.
Aaron was beginning to get up to use the bedsice commode, but still had the foley cath in place. He was incredibly weak, and it took two people to help him transfer to the potty.
At one point, he realized he was not wearing underwear, and was not happy about it. I laughed with joy, and felt this was a good sign of his improvement. There was a time, not so long ago, that he would not have cared, but he had recently become more modest. Not being in control of this situation with the underwear did not make him happy!
The week end was quiet. Continued blood work, and trying to eat. And waiting to see if I noticed any impairments from the cardiac arrest. Each day showed progress, from morning to evening, I noticed a difference.
His kidney function had returned to normal, and his heart was in sinus rhythm.
Aaron wondered what they had on his ear lobe, so I took a picture so he could see his fancy ear ring. He looks like he is sleeping, but he is awake, just very weak.
Aaron's first time out of bed. Looks pretty good, all things considered.
It was slow going, yet encouraging. He was unable to eat, due to the trauma of vomitting, and due to the NG that had been in place. He was making slow progress with taking fluids.
Aaron was beginning to get up to use the bedsice commode, but still had the foley cath in place. He was incredibly weak, and it took two people to help him transfer to the potty.
At one point, he realized he was not wearing underwear, and was not happy about it. I laughed with joy, and felt this was a good sign of his improvement. There was a time, not so long ago, that he would not have cared, but he had recently become more modest. Not being in control of this situation with the underwear did not make him happy!
The week end was quiet. Continued blood work, and trying to eat. And waiting to see if I noticed any impairments from the cardiac arrest. Each day showed progress, from morning to evening, I noticed a difference.
His kidney function had returned to normal, and his heart was in sinus rhythm.
Saturday, August 20, 2011
The Story Continues
The first day in the PICU was filled with ups and down. Aaron's heart rhythm was still erratic, he was in complete heart block.
At one point, the doctors came in and said they were going to put in a pacemaker. When I asked if this would be temporary, they informed me it would be permanent. The idea of my 11yo son having a pacemaker the rest of his life was a bit overwhelming. But no one knew when they would do this. He was not stable enough to go through anesthesia.
The entire day was filled with a parade of doctors and nurses. They had no answers for me, only the same questions that I had already answered...over and over again, with the appearance of each new doctor. And they each wanted to know if I had any questions. Yes, I did, but not any that they had the answers to.
During the second night something happened. Suddenly, there were doctors in Aaron's room again, looking at his cardiac monitor, talking quietly among themselves. The next morning, when the cardiologist came in, he informed me that Aaron's heart had righted itself all on its own. He was now in sinus rhythm! It was faster than they wanted it to be, but it was good. He would not need a pacemaker.
Friday morning, during rounds, the doctors decided it was time to awaken the sleeping giant child. To wean him off the vent and sedation. To let him gently wake up.
It was a day of rejoicing! I knew my son was going to make it!!
One of the medical students discovered during rounds that he was shorter than Aaron. (Aaron is 5'5" and the med student was 5'3") The morning they decided to awaken my son, I laughingly told the med student that Aaron would be ready to arm wrestle by evening. There was laughter all around, and some jokes about the money being on Aaron!
This was an anxious day for me. In spite of the atmosphere of celebration, there was also the unknown that we were still faced with. Would Aaron suffer any brain damage from being down for 10-12 minutes? We would not know for certain for a couple days.
As the sedation began to wear off, and the vent could be removed, the doctors remembered that I had told them about the goofy eyes that Aaron has always made, esp. at his sisters. "Hey, what about the goofy eyes your mom said you make?" one of the doctors asked Aaron. In his groggy state, he made a very good attempt at the goofy eyes. Cheers went up all around the room!
By evening the crowd of doctors had dispersed, it was Friday, and they were all ready to call it a week. They had done good work, and some of them had the weekend to recover.
Gene had gone home to be with the rest of the children for the weekend. I pulled my chair to Aaron's bedside to read the Bible to him and pray for him. After I prayed, thanking God for sparing his life, Aaron began to pray.
"Dear God, please keep healing my body, so you can show everyone how powerful you are", was Aaron's prayer for himself. He spoke this in a barely audible voice, about 6hrs after being taken off the vent. Barely a whisper, but so rich in faith, so precious! He did not ask to be healed, so he could feel better, he wanted to be healed so everyone would know how powerful our God is!
At one point, the doctors came in and said they were going to put in a pacemaker. When I asked if this would be temporary, they informed me it would be permanent. The idea of my 11yo son having a pacemaker the rest of his life was a bit overwhelming. But no one knew when they would do this. He was not stable enough to go through anesthesia.
The entire day was filled with a parade of doctors and nurses. They had no answers for me, only the same questions that I had already answered...over and over again, with the appearance of each new doctor. And they each wanted to know if I had any questions. Yes, I did, but not any that they had the answers to.
During the second night something happened. Suddenly, there were doctors in Aaron's room again, looking at his cardiac monitor, talking quietly among themselves. The next morning, when the cardiologist came in, he informed me that Aaron's heart had righted itself all on its own. He was now in sinus rhythm! It was faster than they wanted it to be, but it was good. He would not need a pacemaker.
Friday morning, during rounds, the doctors decided it was time to awaken the sleeping giant child. To wean him off the vent and sedation. To let him gently wake up.
It was a day of rejoicing! I knew my son was going to make it!!
One of the medical students discovered during rounds that he was shorter than Aaron. (Aaron is 5'5" and the med student was 5'3") The morning they decided to awaken my son, I laughingly told the med student that Aaron would be ready to arm wrestle by evening. There was laughter all around, and some jokes about the money being on Aaron!
This was an anxious day for me. In spite of the atmosphere of celebration, there was also the unknown that we were still faced with. Would Aaron suffer any brain damage from being down for 10-12 minutes? We would not know for certain for a couple days.
As the sedation began to wear off, and the vent could be removed, the doctors remembered that I had told them about the goofy eyes that Aaron has always made, esp. at his sisters. "Hey, what about the goofy eyes your mom said you make?" one of the doctors asked Aaron. In his groggy state, he made a very good attempt at the goofy eyes. Cheers went up all around the room!
By evening the crowd of doctors had dispersed, it was Friday, and they were all ready to call it a week. They had done good work, and some of them had the weekend to recover.
Gene had gone home to be with the rest of the children for the weekend. I pulled my chair to Aaron's bedside to read the Bible to him and pray for him. After I prayed, thanking God for sparing his life, Aaron began to pray.
"Dear God, please keep healing my body, so you can show everyone how powerful you are", was Aaron's prayer for himself. He spoke this in a barely audible voice, about 6hrs after being taken off the vent. Barely a whisper, but so rich in faith, so precious! He did not ask to be healed, so he could feel better, he wanted to be healed so everyone would know how powerful our God is!
Sunday, August 14, 2011
Oh, For Grace To Trust Him More!
'Tis so sweet to trust in Jesus, Just to take him at his Word;
Just to rest upon his promise, Just to know, "Thus saith the Lord."
Jesus, Jesus, how I trust him, How I've proved him o'er and o'er.
Jesus, Jesus, precious Jesus! Oh, for grace to trust him more.
I'm so glad I learned to trust him, Precious Jesus, Saviour, Friend;
And I know that thou art with me, Will be with me 'til the end.
Jesus, Jesus, how I trust him, How I've proved him o'er and o'er.
Jesus, Jesus, precious Jesus! Oh, for grace to trust him more.
As that first night wore on, Aaron would stir and become restless even though under heavy sedation. I sang to him over and over again. I prayed audibly for him, letting him know that God was there and he could rest peacefully because, as Aaron so boldly spoke earlier, "God has this all under control."
Though the mountains shake and the hills be removed,
My unfailing love will not be shaken.
Though the mountains shake and the hills be removed,
My unfailing love will not be shaken.
And neither will my covenent of peace be removed,
My covenent of peace with you.
Oh afficted city, tossed about and without rest,
I'll rebuild your walls with jewels,
And great will be your children's peace.
Though the mountains shake and the hills be removed,
My unfailing love will not be shaken.
**This is part of a song based on Isaiah 54:10-13 Written by a sister in the Lord.
I sang this over and over, as well. This is the song that gets me through rough times. Aaron has heard me sing this many times, and he responded peacefully to it on this night of fighting for his life. (I must say I do not sing it anywhere near as beautifully as the lovely one who put it to music.)
I have called Aaron "my sunshine", and sang "You are My Sunshine" to him since he was my little baby. At 11yo, he was outgrowing being called "my sunshine", but he was not too self important to sing this song to his baby brother and sister on a daily basis. When all else failed to calm him, I sang this to him:)
His first morning in the PICU I opened my Bible and read Lamentations 3:22-26 out loud to Aaron.
"Yet this I call to mind and therefore I have hope:
Because of the Lord's great love we are not consumed, for his compassions never fail.
They are new every morning; great is your faithfulness.
I said to myself, "The Lord is my portion; therefore I will wait for him."
The Lord is good to those whose hope is in him; to the one who seeks him;
It is good to wait quietly for the salvation of the Lord."
And we waited, still uncertain how this was going to turn out, yet trusting in our Heavenly Father's great love for us.
Just to rest upon his promise, Just to know, "Thus saith the Lord."
Jesus, Jesus, how I trust him, How I've proved him o'er and o'er.
Jesus, Jesus, precious Jesus! Oh, for grace to trust him more.
I'm so glad I learned to trust him, Precious Jesus, Saviour, Friend;
And I know that thou art with me, Will be with me 'til the end.
Jesus, Jesus, how I trust him, How I've proved him o'er and o'er.
Jesus, Jesus, precious Jesus! Oh, for grace to trust him more.
As that first night wore on, Aaron would stir and become restless even though under heavy sedation. I sang to him over and over again. I prayed audibly for him, letting him know that God was there and he could rest peacefully because, as Aaron so boldly spoke earlier, "God has this all under control."
Though the mountains shake and the hills be removed,
My unfailing love will not be shaken.
Though the mountains shake and the hills be removed,
My unfailing love will not be shaken.
And neither will my covenent of peace be removed,
My covenent of peace with you.
Oh afficted city, tossed about and without rest,
I'll rebuild your walls with jewels,
And great will be your children's peace.
Though the mountains shake and the hills be removed,
My unfailing love will not be shaken.
**This is part of a song based on Isaiah 54:10-13 Written by a sister in the Lord.
I sang this over and over, as well. This is the song that gets me through rough times. Aaron has heard me sing this many times, and he responded peacefully to it on this night of fighting for his life. (I must say I do not sing it anywhere near as beautifully as the lovely one who put it to music.)
I have called Aaron "my sunshine", and sang "You are My Sunshine" to him since he was my little baby. At 11yo, he was outgrowing being called "my sunshine", but he was not too self important to sing this song to his baby brother and sister on a daily basis. When all else failed to calm him, I sang this to him:)
His first morning in the PICU I opened my Bible and read Lamentations 3:22-26 out loud to Aaron.
"Yet this I call to mind and therefore I have hope:
Because of the Lord's great love we are not consumed, for his compassions never fail.
They are new every morning; great is your faithfulness.
I said to myself, "The Lord is my portion; therefore I will wait for him."
The Lord is good to those whose hope is in him; to the one who seeks him;
It is good to wait quietly for the salvation of the Lord."
And we waited, still uncertain how this was going to turn out, yet trusting in our Heavenly Father's great love for us.
'Tis So Sweet to Trust in Jesus
As Gene and I drove from Lancaster to Delaware, I would catch myself humming the hymn " 'Tis So Sweet to Trust in Jesus". I forced myself to be silent, afraid Gene would think I had really lost it.
Only a few days prior, I had been driving with my children and this hymn came to my mind and I sang it to them. I had not sang, or heard this hymn for a long time, but it was commited to my memory from childhood. In hindsight, I realize God was preparing me for what I was about to go through.
The last line in the chorus kept racing through my thoughts as Gene and I drove, "Jesus, Jesus, precious Jesus! Oh for grace to trust him more".
When we got close to duPont Hospital my cell phone rang. The doctor had examined Aaron and wanted to tell me what he planned to do to treat my son. The nephrologist had also examined Aaron and looked at his lab results. They wanted to put in a line and start dialysis. They wanted to do this right away and needed for me to give them verbal permission. I gave them permission to do so. I wanted Aaron to be getting treatment right away, if that is what the specialists thought was best.
While I was talking to the doctor, Gene took a wrong turn and we were lost. The doctor was unable to help us with directions. He assured me that Aaron was "safe and that nothing was going to happen to him" and that we should take our time and drive carefully so we did not have an accident.
We saw police parked at a pizza shop, and stopped for directions.
When we got to duPont, we did not know what door to go into. It was all very confusing. My cell phone rang again. The doctor wanted to know if Aaron was up to date with his developement, if he does ok in school, or does he have behavioural issues. He said Aaron had said inappropriate things to a nurse, and had threatened to pull her hair out. I assured him this was not at all like my son, and if he would just tell me how to get into the hospital, I would be able to assess what was going on. My son's condition was getting worse, he was scared and had never been without me, other than to go to summer camp, and I could not get into the building to be with him!
We finally found our way into the hospital and had to sign in at the security desk and have our pictures taken. All the while, the anxiety and the need to be with Aaron building up inside me. I felt as though I was going to explode, with little pieces of me showering the entire hospital. Not the sort of way one would explode in anger, but feeling as though my heart was unable to contain the fear and anxiety.
We arrive on the floor, and were asked to wait in the waitingroom. The doctor had just started the proceedure place the line for dialysis, and would come out and talk to us as soon as he was finished.
After a few minutes of waiting, I got up to pace. As I looked out in the hallway, there was a sudden scurry of activity, doctors and nurses rushing in and out of the room where they had Aaron. I told Gene that was not a good sign! No one came to talk to us, we knew something terrible was happening, but did not know what. I decided to walk down the hall, closer to the room.
A nurse stopped me to tell me my son was being rescusitated. The floor seemed to open to swallow me, as my legs became weak and would no longer hold my weight. How could this be happening?! He was always so healthy, he was alert and talking to me only a short while ago! Gene and the nurse helped me back to the waitingroom, and we waited for another lifetime for news of our son.
A lady come in and introduced herself as the director of nursing. She said that Aaron had gone into cardiac arrest shortly after they started anesthesia. They were still doing CPR. I vaguely remember laying down on the floor, and wailing long and sorrowful sounds. Sounds that I was not certain came from my body filled the room. She asked if our son was chronically ill! No!
She told us we had every right to go to our son, but advised against it. We decided it was best to not distract anyone, we wanted them to focus on giving Aaron the best care they could give. After a few minutes, she left us. Gene placed a call to our pastor and left a message with the pastor's family to pray.
I continued to lay with my face down on the floor, crying broken heartedly to the Lord. "Please, don't let Aaron die! Please!" Thoughts were racing through my brain and it was difficult for me to focus, the fear and grief was so strong. I did not know how I could go on. How was I supposed to go on with my life if my son died? How was I going to go home and tell the rest of my children that their brother was no longer alive? I could not bear it!! What if I never saw my son alive again?
When Aaron was a baby and we had him dedicated, someone prophesied over him that one day he would be standing in a crowd, testifying about the great power of the Lord. How could that happen if he were dead?! How could that be fulfilled?!
The Lord spoke to me at one point to gently ask me to trust him more. He said some very personal things, that at this point I am unable to share, some day, when his words are fulfilled, I will be able to share them publicly.
After what seemed to be an eternity, the nurse came back to tell us that our son has a heart beat again! The doctor would be out to speak to us when he could.
The nurse brought us food and drink, telling us that if we did not eat we would be of no help to our son. So we forced food and juice and coffee into our mouths, gagging on every mouthful, telling ourselves that this would somehow be helpful to Aaron.
We were not prepared for what the doctor had to say to us. Our son's heart had stopped about 15 minutes after they gave him the anesthesia to insert the dialysis line. They did CPR for 10-12 minutes. They had him on a vent, and heavily sedated. He had an NG tube and a foley catheter in place. He had numerous IV lines. They would not be able to tell us if Aaron would have neurological damage until they took him off the vent and let the sedation wear off. They could not tell us why he went into renal failure, and cardiac arrest. They believed, at this point, the heart was the primary issue, rather than the kidneys, as they had earlier thought. He did not need dialysis, even though the creatinine levels were very high, the potassium and calcium levels were not. They thought perhaps Aaron had Lyme carditis.
After speaking to the doctor, the nurse told us we could go see Aaron. Gene and I walked down the hall, clingly to each others hands.
I wish I could erase from my minds eye the sight of my son in the hospital bed. His eyes were slightly opened, but vacant, his tongue slightly protruding beside the vent tube.
As I approached his bedside, I grasped his hand. It was cold and stiff, like a corpse. I rubbed his arm and the side of his body, it too was cold. I knelt by his bedside as my legs could no longer support my body. I prayed again. Pleading with the Lord for a miracle. Gene knelt beside me. And we thanked the Lord that Aaron was still alive, and begged for a miracle.
This picture was taken the day they decided Aaron was well enough to come off the vent. I could not bear to take any pictures before then, for fear that the last picture I would have of my son would be one of him on a vent.
The tower of IVs. One for fluids, the rest for medications.
Only a few days prior, I had been driving with my children and this hymn came to my mind and I sang it to them. I had not sang, or heard this hymn for a long time, but it was commited to my memory from childhood. In hindsight, I realize God was preparing me for what I was about to go through.
The last line in the chorus kept racing through my thoughts as Gene and I drove, "Jesus, Jesus, precious Jesus! Oh for grace to trust him more".
When we got close to duPont Hospital my cell phone rang. The doctor had examined Aaron and wanted to tell me what he planned to do to treat my son. The nephrologist had also examined Aaron and looked at his lab results. They wanted to put in a line and start dialysis. They wanted to do this right away and needed for me to give them verbal permission. I gave them permission to do so. I wanted Aaron to be getting treatment right away, if that is what the specialists thought was best.
While I was talking to the doctor, Gene took a wrong turn and we were lost. The doctor was unable to help us with directions. He assured me that Aaron was "safe and that nothing was going to happen to him" and that we should take our time and drive carefully so we did not have an accident.
We saw police parked at a pizza shop, and stopped for directions.
When we got to duPont, we did not know what door to go into. It was all very confusing. My cell phone rang again. The doctor wanted to know if Aaron was up to date with his developement, if he does ok in school, or does he have behavioural issues. He said Aaron had said inappropriate things to a nurse, and had threatened to pull her hair out. I assured him this was not at all like my son, and if he would just tell me how to get into the hospital, I would be able to assess what was going on. My son's condition was getting worse, he was scared and had never been without me, other than to go to summer camp, and I could not get into the building to be with him!
We finally found our way into the hospital and had to sign in at the security desk and have our pictures taken. All the while, the anxiety and the need to be with Aaron building up inside me. I felt as though I was going to explode, with little pieces of me showering the entire hospital. Not the sort of way one would explode in anger, but feeling as though my heart was unable to contain the fear and anxiety.
We arrive on the floor, and were asked to wait in the waitingroom. The doctor had just started the proceedure place the line for dialysis, and would come out and talk to us as soon as he was finished.
After a few minutes of waiting, I got up to pace. As I looked out in the hallway, there was a sudden scurry of activity, doctors and nurses rushing in and out of the room where they had Aaron. I told Gene that was not a good sign! No one came to talk to us, we knew something terrible was happening, but did not know what. I decided to walk down the hall, closer to the room.
A nurse stopped me to tell me my son was being rescusitated. The floor seemed to open to swallow me, as my legs became weak and would no longer hold my weight. How could this be happening?! He was always so healthy, he was alert and talking to me only a short while ago! Gene and the nurse helped me back to the waitingroom, and we waited for another lifetime for news of our son.
A lady come in and introduced herself as the director of nursing. She said that Aaron had gone into cardiac arrest shortly after they started anesthesia. They were still doing CPR. I vaguely remember laying down on the floor, and wailing long and sorrowful sounds. Sounds that I was not certain came from my body filled the room. She asked if our son was chronically ill! No!
She told us we had every right to go to our son, but advised against it. We decided it was best to not distract anyone, we wanted them to focus on giving Aaron the best care they could give. After a few minutes, she left us. Gene placed a call to our pastor and left a message with the pastor's family to pray.
I continued to lay with my face down on the floor, crying broken heartedly to the Lord. "Please, don't let Aaron die! Please!" Thoughts were racing through my brain and it was difficult for me to focus, the fear and grief was so strong. I did not know how I could go on. How was I supposed to go on with my life if my son died? How was I going to go home and tell the rest of my children that their brother was no longer alive? I could not bear it!! What if I never saw my son alive again?
When Aaron was a baby and we had him dedicated, someone prophesied over him that one day he would be standing in a crowd, testifying about the great power of the Lord. How could that happen if he were dead?! How could that be fulfilled?!
The Lord spoke to me at one point to gently ask me to trust him more. He said some very personal things, that at this point I am unable to share, some day, when his words are fulfilled, I will be able to share them publicly.
After what seemed to be an eternity, the nurse came back to tell us that our son has a heart beat again! The doctor would be out to speak to us when he could.
The nurse brought us food and drink, telling us that if we did not eat we would be of no help to our son. So we forced food and juice and coffee into our mouths, gagging on every mouthful, telling ourselves that this would somehow be helpful to Aaron.
We were not prepared for what the doctor had to say to us. Our son's heart had stopped about 15 minutes after they gave him the anesthesia to insert the dialysis line. They did CPR for 10-12 minutes. They had him on a vent, and heavily sedated. He had an NG tube and a foley catheter in place. He had numerous IV lines. They would not be able to tell us if Aaron would have neurological damage until they took him off the vent and let the sedation wear off. They could not tell us why he went into renal failure, and cardiac arrest. They believed, at this point, the heart was the primary issue, rather than the kidneys, as they had earlier thought. He did not need dialysis, even though the creatinine levels were very high, the potassium and calcium levels were not. They thought perhaps Aaron had Lyme carditis.
After speaking to the doctor, the nurse told us we could go see Aaron. Gene and I walked down the hall, clingly to each others hands.
I wish I could erase from my minds eye the sight of my son in the hospital bed. His eyes were slightly opened, but vacant, his tongue slightly protruding beside the vent tube.
As I approached his bedside, I grasped his hand. It was cold and stiff, like a corpse. I rubbed his arm and the side of his body, it too was cold. I knelt by his bedside as my legs could no longer support my body. I prayed again. Pleading with the Lord for a miracle. Gene knelt beside me. And we thanked the Lord that Aaron was still alive, and begged for a miracle.
Tuesday, August 9, 2011
So the Story Begins
Three weeks ago, I was sitting in my house working on plans for our new school year. Little did I realize I was about to take an incredible journey, unlike any other I had ever taken.
Aaron had been working hard all day, working hard at getting out of doing his chores, that is. He had employed every trick in the book: trips to the bathroom, slipping out the back door, you name it. Finally, at suppertime, I called him in again, and told him he needed to empty the dishwasher, or we would have nothing to eat with.
He came in and complained of being dizzy. It was a very hot day, so I suggested he sit down a few minutes and rest in the a/c with a drink. However, I believed his dizziness was just another ploy to get out of unloading the dishwasher. Until he began to vomit.
My 1st thought was that Aaron had picked up a stomach bug. Stomach bugs are not pleasant with any family, but with a large family, it is a whole new level of unpleasantness, again and again.
A few minutes later, I sat down to watch the evening news, which is a rare occurrence for me, since it comes on when we are usually eating supper. They had a short segment on heat exhaustion. It caused me to re-assess the situation with Aaron.
I immediately had him get into the bathtub, while I called our family doctor's office. After a couple calls back and forth with the doctor, and more vomiting, he decided he felt we cold ride this out at home, as long as the vomitting did not increase. Aaron's temperature was normal, he was taking sips of fluid every 5-10 minutes, and his vomitting had decreased.
We kept him downstairs with us for the night, to observe, and encourage with fluids, and tried to get some sleep.
Morning came with increased vomitting. After a call to our family doctor, we headed for the ER. We thought we would get a bag of fluids, some medicine for the vomitting, they would do some blood work, and send us on our merry way. When Aaron gets any type of tummy bug, or upset, he oft-times would end up needing medicine to make the vomitting stop, we assumed this was another one of those times.
We were not prepared for what was about to happen!
The doctor came in, ordered blood work and an IV, just as we expected. When the bloodwork was done, he came in to give us the results.
"Your son is in renal failure" the doctor told us. "What?! How can he be in renal failure?" I asked. He said he did not know, but was calling the pediatrician down from the peds unit to see Aaron, and she would decide what needed to be done.
When the ER doctor left the room, Aaron looked at me and said, "God has this all under control, Mom". That is when I broke down and cried. We called our pastor, and he came right away to annoint Aaron with oil, for healing. (James 5:14-15a)
The pediatrician decided after speaking to the nephrologist at AI duPont that Aaron should be transferred there to be admitted.
While the phone calls were placed and the return call awaited, Aaron's oxygen level began to drop, and his cardiac rhythm began to become irregular. They place a nasal cannula on him, and his level continued to drop. They but on a mask, and still continued to drop. They put on a non-rebreather mask, had a respiratory therapist draw arterial blood gasses, and moved him into a trauma room, in the event they needed to intubate him.
At this point, the decision had been made to airlift Aaron, rather than send him by ambulance, to duPont.
Gene and I were in a panic. What were we supposed to do? The rest of the children, from Sarah down, were home by themselves. Gene decided to go home, to tell the children what was going on. We did not think that was something we wanted to tell her over the phone. And he wanted to pack things for me, since we would obviously be staying a day or two.
Before Gene left, Aaron told us that he did not want to die.
I was alone with Aaron when the helicopter came to get him. I prayed with him, and held his hand as they strapped him down in preparation for his helicopter ride. I kissed him at least a dozen times. He was alert and knew what was going on, yet he was calm.
The pediatrician walked with me to the waitingroom and offered to wait with me until Gene came back. I thanked her, and made a comment about not wanting to take her away from her work. In reality, I wanted to be alone, well, as alone as one can be in a busy ER waitingroom. I was alone in a crowd of strangers, and did not care that I was crying uncontrolably.
While I was waiting, my mom called. She said my brother had told her we were taking Aaron into the hospital and she was wondering how he was. I broke down and cried even more as I told her my son was in kidney failure. She put my brother on the phone. Fred told me to not let my mind go to places it should not go. He was confident God would perform a miracle. More tears, as I told him I was talking to a miracle. (Fred's life is a miracle of redemption.)
My cell phone rang again. The helicopter made it to duPont and Aaron wanted to talk to me. He sounded good, a bit scared, as one would expect, but good.
After what seemed an eternity, Gene picked me up, and we were on our way with our mapquest directions.
Aaron had been working hard all day, working hard at getting out of doing his chores, that is. He had employed every trick in the book: trips to the bathroom, slipping out the back door, you name it. Finally, at suppertime, I called him in again, and told him he needed to empty the dishwasher, or we would have nothing to eat with.
He came in and complained of being dizzy. It was a very hot day, so I suggested he sit down a few minutes and rest in the a/c with a drink. However, I believed his dizziness was just another ploy to get out of unloading the dishwasher. Until he began to vomit.
My 1st thought was that Aaron had picked up a stomach bug. Stomach bugs are not pleasant with any family, but with a large family, it is a whole new level of unpleasantness, again and again.
A few minutes later, I sat down to watch the evening news, which is a rare occurrence for me, since it comes on when we are usually eating supper. They had a short segment on heat exhaustion. It caused me to re-assess the situation with Aaron.
I immediately had him get into the bathtub, while I called our family doctor's office. After a couple calls back and forth with the doctor, and more vomiting, he decided he felt we cold ride this out at home, as long as the vomitting did not increase. Aaron's temperature was normal, he was taking sips of fluid every 5-10 minutes, and his vomitting had decreased.
We kept him downstairs with us for the night, to observe, and encourage with fluids, and tried to get some sleep.
Morning came with increased vomitting. After a call to our family doctor, we headed for the ER. We thought we would get a bag of fluids, some medicine for the vomitting, they would do some blood work, and send us on our merry way. When Aaron gets any type of tummy bug, or upset, he oft-times would end up needing medicine to make the vomitting stop, we assumed this was another one of those times.
We were not prepared for what was about to happen!
The doctor came in, ordered blood work and an IV, just as we expected. When the bloodwork was done, he came in to give us the results.
"Your son is in renal failure" the doctor told us. "What?! How can he be in renal failure?" I asked. He said he did not know, but was calling the pediatrician down from the peds unit to see Aaron, and she would decide what needed to be done.
When the ER doctor left the room, Aaron looked at me and said, "God has this all under control, Mom". That is when I broke down and cried. We called our pastor, and he came right away to annoint Aaron with oil, for healing. (James 5:14-15a)
The pediatrician decided after speaking to the nephrologist at AI duPont that Aaron should be transferred there to be admitted.
While the phone calls were placed and the return call awaited, Aaron's oxygen level began to drop, and his cardiac rhythm began to become irregular. They place a nasal cannula on him, and his level continued to drop. They but on a mask, and still continued to drop. They put on a non-rebreather mask, had a respiratory therapist draw arterial blood gasses, and moved him into a trauma room, in the event they needed to intubate him.
At this point, the decision had been made to airlift Aaron, rather than send him by ambulance, to duPont.
Gene and I were in a panic. What were we supposed to do? The rest of the children, from Sarah down, were home by themselves. Gene decided to go home, to tell the children what was going on. We did not think that was something we wanted to tell her over the phone. And he wanted to pack things for me, since we would obviously be staying a day or two.
Before Gene left, Aaron told us that he did not want to die.
I was alone with Aaron when the helicopter came to get him. I prayed with him, and held his hand as they strapped him down in preparation for his helicopter ride. I kissed him at least a dozen times. He was alert and knew what was going on, yet he was calm.
The pediatrician walked with me to the waitingroom and offered to wait with me until Gene came back. I thanked her, and made a comment about not wanting to take her away from her work. In reality, I wanted to be alone, well, as alone as one can be in a busy ER waitingroom. I was alone in a crowd of strangers, and did not care that I was crying uncontrolably.
While I was waiting, my mom called. She said my brother had told her we were taking Aaron into the hospital and she was wondering how he was. I broke down and cried even more as I told her my son was in kidney failure. She put my brother on the phone. Fred told me to not let my mind go to places it should not go. He was confident God would perform a miracle. More tears, as I told him I was talking to a miracle. (Fred's life is a miracle of redemption.)
My cell phone rang again. The helicopter made it to duPont and Aaron wanted to talk to me. He sounded good, a bit scared, as one would expect, but good.
After what seemed an eternity, Gene picked me up, and we were on our way with our mapquest directions.
Sunday, July 31, 2011
Upcoming Posts
As many of you know, my son Aaron spent 10 days in AI duPont Children's hosp. He is fine now, but had suddenly gone into renal failure, and after being airlifted to duPont, went into cardiac arrest.
We came home Friday and are trying to rest and slowly get back to our normal life. Or, as close to normal as possible, as I am uncertain our lives will ever be the same after almost losing our precious 1st born son.
I will be sharing our experience, and the goodness of our Heavenly Father, in detail in upcoming posts. I am certain everyone will be in awe of God's love and power!
To Him be all honor and glory!!!
We came home Friday and are trying to rest and slowly get back to our normal life. Or, as close to normal as possible, as I am uncertain our lives will ever be the same after almost losing our precious 1st born son.
I will be sharing our experience, and the goodness of our Heavenly Father, in detail in upcoming posts. I am certain everyone will be in awe of God's love and power!
To Him be all honor and glory!!!
Monday, July 18, 2011
Homemade Goodness
I enjoy making special treats like this for my family. When it is cold and snowy, homecanned foods taste so good. It is as though the sunshine has been stored in a jar, to be opened on a winter day.
Friday, July 15, 2011
A Different Boy
I've been reading good things about Ginkgo extract and the affect it has on children with Down syndrome. Both from official studies, and unofficial observations of moms who give it to their children. After researching the safety of Ginkgo, I decided to give it a try with Topher. I thought if I do not see any improvement within a week or so, I will not continue.
We are seeing some very positive results. He has much better control of his tongue and saliva. This was a result I did not expect to see. I suppose it makes him more aware of his mouth and tongue muscles, and helps him remember the many reminders we have given him to put his tongue in.
The other difference we see is his ability to focus on his tasks, i.e. the games we play with him. We have a game called Wash Day Bingo. It has little games peices shaped like articles of clothing. We have him match these to the pictures on the game board. Without the Ginkgo he lost his interest before the board was full, and he would need lots of coaching to match a few. With the Ginkgo, he can match almost all of the peices with little, or no coaching, put them all back in the box and do the sign for more and ask for more. He is actually enjoying the game so much he asks for more!
Christopher is also much more cooperative. For instance, he had an appointment at the ENT office today, to have his hearing tested and ear tubes checked. He is not usually very cooperative with the hearing test. Not that he would cry and fight, he would just fuss and pull at the ear peices and wires, and squirm his head to make it difficult for them to do the test. Today, he held his head very still and kept his hands on his lap, he followed the directions the tech was giving him.
When the physician assistant came in to examine his ears, she said he had a lot of wax surrounding the left tube. He sat patiently on my lap when she removed the wax. When she was done, he signed and said, "thank-you".
Don't misunderstand, the Ginkgo has not made him passive. He is his usual outgoing self, maybe even more outgoing. He greeted each person in the doctor's office, as they were taking him to a room. He did lots of smiling, and lots of "talking" to the nurses. When it was time to go, he picked out his lollipop and sticker (Muppets, of course), and said goodbye to everyone as we headed to the car. He thoroughly enjoyed his visit with them today.
Another interesting "for instance" today. We went to the gorcery store on the way home. As we walked through the store, he was naming familiar items. This has never happened before, never. It was so much fun. I was a push-over when he saw his favorite snack, cheese curls, and got him a bag.
I'm still cautiously skeptical, and will continue to monitor the effectiveness of the herb. But so far, it looks like a good thing for Topher.
We are seeing some very positive results. He has much better control of his tongue and saliva. This was a result I did not expect to see. I suppose it makes him more aware of his mouth and tongue muscles, and helps him remember the many reminders we have given him to put his tongue in.
The other difference we see is his ability to focus on his tasks, i.e. the games we play with him. We have a game called Wash Day Bingo. It has little games peices shaped like articles of clothing. We have him match these to the pictures on the game board. Without the Ginkgo he lost his interest before the board was full, and he would need lots of coaching to match a few. With the Ginkgo, he can match almost all of the peices with little, or no coaching, put them all back in the box and do the sign for more and ask for more. He is actually enjoying the game so much he asks for more!
Christopher is also much more cooperative. For instance, he had an appointment at the ENT office today, to have his hearing tested and ear tubes checked. He is not usually very cooperative with the hearing test. Not that he would cry and fight, he would just fuss and pull at the ear peices and wires, and squirm his head to make it difficult for them to do the test. Today, he held his head very still and kept his hands on his lap, he followed the directions the tech was giving him.
When the physician assistant came in to examine his ears, she said he had a lot of wax surrounding the left tube. He sat patiently on my lap when she removed the wax. When she was done, he signed and said, "thank-you".
Don't misunderstand, the Ginkgo has not made him passive. He is his usual outgoing self, maybe even more outgoing. He greeted each person in the doctor's office, as they were taking him to a room. He did lots of smiling, and lots of "talking" to the nurses. When it was time to go, he picked out his lollipop and sticker (Muppets, of course), and said goodbye to everyone as we headed to the car. He thoroughly enjoyed his visit with them today.
Another interesting "for instance" today. We went to the gorcery store on the way home. As we walked through the store, he was naming familiar items. This has never happened before, never. It was so much fun. I was a push-over when he saw his favorite snack, cheese curls, and got him a bag.
I'm still cautiously skeptical, and will continue to monitor the effectiveness of the herb. But so far, it looks like a good thing for Topher.
Thursday, July 14, 2011
Cut Flowers
I love annuals for cut flower bouquets. These are from the flower bed that runs the length of my house. My favorite annuals are snap dragons. I have six different colors this summer.
When I was a young bride I did not especially care for zinnias and marigolds. But as I got older, I longed for the old fashioned look they bring to the flower beds. I plant them now, in abundance, because they are my mom's favorite, and I know it gives her pleasure to see them when she comes to visit. Her flower beds do not get as much sunshine as mine do, and zinnias love sunshine. It makes me happy to be able to give her even such a small moment of pleasure.
The lovely crystal vase you see in the picture is one we recieved as a wedding gift 24 years ago.
It is amazing what a simple handful of cut flowers, in a vase that I already own, brings so much cheer and brightness to my kitchen. Not much effort involved, and no expense.
My dad chided me for planting flowers when I no longer have a vegetable garden. He thinks I have my priorities mixed up. He does not understand the value of appreciating the beautiful things that God has created, or that life is not all about work. A home is about so much more than a place to eat meals and sleep at night.
Monday, July 11, 2011
It's Monday
Monday is a rough day around here. I'm not sure exactly why, but it is. Perhaps it is due to the routine of the week being broken by Daddy being home instead of at work.
This morning was busier than usual. Sarah, our 14yo, needed to be dropped off at camp. She was supposed to remind me last week to have the pharmacy refill her asthma meds. That did not happen, so we needed to stop at the pharmacy on the way to camp to pick up her meds.
Sarah hurt her foot on Saturday. She was doing her usual shuffle/skip/hop down the stairs at the speed of light, and lost her footing. She ended up tangled in the baby gate at the bottom of the stairs. For a while we were uncertain if it would mean a trip to the ER and possibly a cast. After 2 days of relative rest, her foot looks much better. If she doesn't completely overdo things at camp I think she will be ok. But this is the girl that has been told countless times to slow down on the stairs, and was miserable with resting for two days. So, we'll see. I picked up a bottle of ibuprofen for her while I was at the pharmacy, that was another one of the things on my to-do list.
Before I took Sarah to camp, I washed a load of towels, to be hung out by Bethany while I was gone. When I got back, the load of Gene's work clothes Bethany had started was ready to be hung out. Trinity's diapers take a bit longer to wash, but they are done and on the line, too. No dryer today!
Since I know Monday can be challenging, with behaviour not up to par, I decided to get supper started before my day got the better of me. I coated boneless chicken breasts with Italian salad dressing, wrapped them in foil and put them in my roaster oven to bake nice and slow. I also cleaned and wrapped some potatoes in foil and tossed them in the roaster oven, as well. I have my roaster oven sitting on my back porch. My family will have a nice supper without my house being heated in the process. I call it "porch cooking". I also made a double batch of finger jello and cut up two cantalope for dessert and for snacking.
Then there are the many little things that needed my attention: Josh's eye med, patch and glasses. Christopher's Ginko, diaper change, and dressed. Trinity's Singlulair, diaper change and dressed. Breakfast, lunch. Phone calls to two different insurance companies regarding bills for two different children.
This afternoon I plan to work on school plans for the coming year. This will give me a chance to sit while Christopher is napping. Since I am experiencing a heat related headache, sitting in the air conditioning sounds divine.
This morning was busier than usual. Sarah, our 14yo, needed to be dropped off at camp. She was supposed to remind me last week to have the pharmacy refill her asthma meds. That did not happen, so we needed to stop at the pharmacy on the way to camp to pick up her meds.
Sarah hurt her foot on Saturday. She was doing her usual shuffle/skip/hop down the stairs at the speed of light, and lost her footing. She ended up tangled in the baby gate at the bottom of the stairs. For a while we were uncertain if it would mean a trip to the ER and possibly a cast. After 2 days of relative rest, her foot looks much better. If she doesn't completely overdo things at camp I think she will be ok. But this is the girl that has been told countless times to slow down on the stairs, and was miserable with resting for two days. So, we'll see. I picked up a bottle of ibuprofen for her while I was at the pharmacy, that was another one of the things on my to-do list.
Before I took Sarah to camp, I washed a load of towels, to be hung out by Bethany while I was gone. When I got back, the load of Gene's work clothes Bethany had started was ready to be hung out. Trinity's diapers take a bit longer to wash, but they are done and on the line, too. No dryer today!
Since I know Monday can be challenging, with behaviour not up to par, I decided to get supper started before my day got the better of me. I coated boneless chicken breasts with Italian salad dressing, wrapped them in foil and put them in my roaster oven to bake nice and slow. I also cleaned and wrapped some potatoes in foil and tossed them in the roaster oven, as well. I have my roaster oven sitting on my back porch. My family will have a nice supper without my house being heated in the process. I call it "porch cooking". I also made a double batch of finger jello and cut up two cantalope for dessert and for snacking.
Then there are the many little things that needed my attention: Josh's eye med, patch and glasses. Christopher's Ginko, diaper change, and dressed. Trinity's Singlulair, diaper change and dressed. Breakfast, lunch. Phone calls to two different insurance companies regarding bills for two different children.
This afternoon I plan to work on school plans for the coming year. This will give me a chance to sit while Christopher is napping. Since I am experiencing a heat related headache, sitting in the air conditioning sounds divine.
Monday, June 27, 2011
Day Out With Thomas
You Might be the Mom of a Child with Special Needs If.....
..you have your insurance policy number memorized.
..you realize your child is still little and their Carter's are not worn out. (for those of us old enough to remember the old Carter's commercial)
..you have learned to laugh at things that would bring an ordinary woman to tears. And you cry about things that others think are funny:(
..you can calmly perform the Heimlich manuever, and sit back down to continue your meal.
..after you have performed the Heimlich manuever, you can reach over and wipe the chocolate oozing from your child's nose and it does not activate your gag reflex.
..you spend more time talking on the phone to your child's doctor than you do with your best friend. In fact, your child's doctor IS now your best friend.
..you go to Hershey several times a year to the specialists, but have not been to Hershey Park for over 10 years.
..you don't let your husband get rid of odd peices of lumbar because you want your child to use them as a balance beam or obstacle course, to improve balance and gross motor skills.
..you have knees that are more calloused than the average woman from kneeling on the floor to be at face level with a smaller than average four year old. And from all the extra time kneeling before the Lord, asking for the grace to get through another crisis.
..you feel panicked because no one has hugged you, or bit you, in the past 10 minutes.
..you forget that not all four year olds can understand sign language.
..you realize your child is still little and their Carter's are not worn out. (for those of us old enough to remember the old Carter's commercial)
..you have learned to laugh at things that would bring an ordinary woman to tears. And you cry about things that others think are funny:(
..you can calmly perform the Heimlich manuever, and sit back down to continue your meal.
..after you have performed the Heimlich manuever, you can reach over and wipe the chocolate oozing from your child's nose and it does not activate your gag reflex.
..you spend more time talking on the phone to your child's doctor than you do with your best friend. In fact, your child's doctor IS now your best friend.
..you go to Hershey several times a year to the specialists, but have not been to Hershey Park for over 10 years.
..you don't let your husband get rid of odd peices of lumbar because you want your child to use them as a balance beam or obstacle course, to improve balance and gross motor skills.
..you have knees that are more calloused than the average woman from kneeling on the floor to be at face level with a smaller than average four year old. And from all the extra time kneeling before the Lord, asking for the grace to get through another crisis.
..you feel panicked because no one has hugged you, or bit you, in the past 10 minutes.
..you forget that not all four year olds can understand sign language.
Friday, June 17, 2011
The Empty Neighborhood
One day, a few months ago, my daughter and I were out and made a wrong turn. In the process of getting back on track, we ended up in one of those new housing developements. You know the ones, they have houses that all look alike, like they were made of cookie cutters.
This developement was strange, it was devoid of people, there were no visible cars, there were no signs of life at all. Especially missing were the evidence of the presense of children.
The lawns were all perfectly manicured, the landscaping perfect. The houses all had lovely decorations on the doors and curtains in the windows. It was like a beautiful showroom.
There were no noises, other than the sound of our van. A strange hush on that part of the planet. Rather than being like the lovely quietness of a forest, or meadow, it was unpleasant and unattractive. I felt like I had crossed into another dimension, like something out of The Twilght Zone.
I am certain, during the time of day we happened to find ourselves in the neighborhood, all the owners were away, hard at work, earning money to pay for their manicured piece of dirt. Working so hard, in fact, that they did not have the time to really live in those houses. No time for children, even if they had the desire for them.
I remember feeling relief when I finally found my way out of that neighborhood.
When I pulled into my driveway I was greeted by the usual sight of worn out, patchy looking grass, the ugly sand turtle, and bikes, that were left haphazardly, as my children ran to the van to greet me.
While others may like those quiet, neat, perfect houses in that other neighborhood, I'll take my old house full of children to love.
This developement was strange, it was devoid of people, there were no visible cars, there were no signs of life at all. Especially missing were the evidence of the presense of children.
The lawns were all perfectly manicured, the landscaping perfect. The houses all had lovely decorations on the doors and curtains in the windows. It was like a beautiful showroom.
There were no noises, other than the sound of our van. A strange hush on that part of the planet. Rather than being like the lovely quietness of a forest, or meadow, it was unpleasant and unattractive. I felt like I had crossed into another dimension, like something out of The Twilght Zone.
I am certain, during the time of day we happened to find ourselves in the neighborhood, all the owners were away, hard at work, earning money to pay for their manicured piece of dirt. Working so hard, in fact, that they did not have the time to really live in those houses. No time for children, even if they had the desire for them.
I remember feeling relief when I finally found my way out of that neighborhood.
When I pulled into my driveway I was greeted by the usual sight of worn out, patchy looking grass, the ugly sand turtle, and bikes, that were left haphazardly, as my children ran to the van to greet me.
While others may like those quiet, neat, perfect houses in that other neighborhood, I'll take my old house full of children to love.
Saturday, June 11, 2011
Another School Year is Complete
We had our homeschool evualtions yesterday, the official end of our school year. Even though I have been homeschooling for many years, since 1994, I always breath a sigh of relief at having all the legal requirements completed.
Our evaluator commented how he is always amazed at how much our family covers each year, all that my children accomplish. I was surprised to hear him say that. I do not really know what others cover, since I don't compare myself and my children to other families. I don't really ask other moms what they are doing.
I need to remind myself to look at the big picture sometimes. I get bogged down with the work of each day that I can easily overlook the fact that each of my children have made good progress. One of my children has made great progress, and has bloomed into a scholar who loves to learn.
What a blessing it is to be able to teach my children. It does not always feel like a blessing in the daily grind of life, but it is a blessing. One of the things that brings me the most satisfaction as a homeschool mom is listening to my children read from the Bible! Isn't that the true purpose of learning to read?
While the children are all enjoying a bit of a break from the bookwork, my job continues. The excitement of planning for another school year is always a pleasure.
Our evaluator commented how he is always amazed at how much our family covers each year, all that my children accomplish. I was surprised to hear him say that. I do not really know what others cover, since I don't compare myself and my children to other families. I don't really ask other moms what they are doing.
I need to remind myself to look at the big picture sometimes. I get bogged down with the work of each day that I can easily overlook the fact that each of my children have made good progress. One of my children has made great progress, and has bloomed into a scholar who loves to learn.
What a blessing it is to be able to teach my children. It does not always feel like a blessing in the daily grind of life, but it is a blessing. One of the things that brings me the most satisfaction as a homeschool mom is listening to my children read from the Bible! Isn't that the true purpose of learning to read?
While the children are all enjoying a bit of a break from the bookwork, my job continues. The excitement of planning for another school year is always a pleasure.
Tuesday, June 7, 2011
The Trip to the Pediatric Ophthalmologist
Josh had an appointment with his eye doctor last Wednesday. It was just a routine visit, but routine can turn out otherwise with Josh. We have had so many twists and turns with his condition that I never look at an appointent as "just a routine visit".
Josh's appointment went well. His eye pressures were 15 in his healthy eye, and 19 in his eye with PHPV, microphthalmia, and aphakic glaucoma. It was exactly the same as it had been the previous visit. Stable is good. The last visit there was some concern that his pressure was beginning to creep up a bit.
Josh read the big boy eye chart for the very first time. He had been reading the one with the shapes, and had it memorized. The program I use to teach my children to read does not have a lot of practice with capitol letters in kindergarten. I decided to begin drills for capitols. His vision was exactly the same in his right eye, the one with the problems, 20/50 (with his contact lens and glasses, of course.) His left eye needed a prescription change, it was only 20/40, but with the prescription change, he was able to see 20/20. I have to wonder if we would picked up on his need for a prescription change if he had not been able to read the letter chart.
The non-routine event of the day had nothing to do with Josh.
As we were leaving to go to the doctor's office, Christopher poked Sarah in the eye with his fingernail. Sarah had already planned to go with me, so I went ahead and took her along, never realizing just how badly her eye really hurt. She is a bit over dramatic, which is typical for her age.
When we got to the doctor's office, the doctor was in the reception area and heard us talking about Sarah's mishap. He came out to the waitingroom to have a look. He told us he would have a better look when they called Josh back to a room.
Turns out Sarah had a corneal abrasion! She needed antibiotic drops and a follow-up visiton Friday. On Friday, her cornea looked better, but she still had blurry vision in that eye. We have to go back in 4-6wks to have it checked again.
A Mother's Day to Remember
Most of us cannot remember exactly where we were and what we were doing on each holiday. I know I cerainly cannot. But Mother's Day 2011 is an exception. I will always remember.
While most moms were waking to a lovely breakfast made especially for them by their beloved children, I was waking to a hospital room in the pediatric unit of our local hospital. Well, not exactly waking, since I had not exactly slept. I was spending the weekend of the celebration of motherhood continuing in my call of duty as a mother.
Trinity, our smallest shoe dweller was very ill. We went to the ER in the wee hours of Saturday morning, what I would generally consider the middle of the night. She had a cold and was having increased difficulty breathing. She was wheezing and struggling, and at some point became very listless and sleepy. I knew it was bad. I went prepared for a hospital admission. But I was not prepared for how bad it was to become.
Saturday night Trinity's oxygen level was very low and she needed to have a nasal canula to give her some O2. My little girl, who will barely tolerate a hat or barrette, slept through this, she did not mess with it even when she stirred in her sleep. She is also a child who does not sleep through the night, yet she slept.
Very early on Mother's Day morning the pediatrician came in to talk to me. She was concerned that Trinity was getting worse instead of better, in spite of the IV antibiotics an steroids. She was not holding her oxygen levels, she was lethargic, her oral intake was very low and her diapers very dry. She wanted to prepare me for the possibility of sending Trinity to Penn State Children's Hospital, in case she needed to be intubated, there would be a pediatric pulmonolgist available.
The pediatrician ordered another chest xray, to have a look at the progression of the pnuemonia, and started IV fluids, rather than continue with just a saline lock for meds.
When the pediatrician came in to tell me the results of the xray, she talked more about the probability of sending Trinity to the children's hospital.
I felt so helpless, so I did the first thing that came to my mind: Pray, and call our pastor before he went in for service, to have others pray!
Then I called home to my husband, to have him and the other children pray.
I felt at peace, knowing my little girl was covered in prayer and that God had it all under control. (He had it all under control before we prayed, but praying reminded me that He was in control.)
The morning wore on and my little blessing slept. My husband came in to have lunch with me in the cafeteria and to bring gifts and cards from the children. Still she slept.
About 1pm, which is soon after our second service ends, Trinity awoke. She was still week, but her oxygen levels came up. As the day wore on, she got stronger and seemed more like her usual busy little self.
That night, when the next pediatrician on duty came in, she looked at Trinity and said how good she looked. She was not seeing any of the scarey things her collegue had seen in the previous 18-24hrs. But she wanted to keep her another night to make sure she did not relapse.
Monday was a busy day. Trinity was not content to lay in the crib and watch cartoons, as they had hoped. She wanted to walk the halls and talk to other babies. The pediatrician wanted to send her home, but the only thing stopping her was Trinity was not eating. She was still nursing, but she would not eat a single bite of their food.
By Monday evening they listened to my mommy wisdom that Miss Trinity will eat when she is home with her siblings. They let us go home. Instead of being transferred to the children's hospital, we were allowed to go home!
How happy I was to be home and see my other children. How grateful and joyous I was that the Lord healed my baby girl.
God is more than faithful!!
What made Mother's Day memorable for you??
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