Posts
At the CNN tour in Atlanta.
Trying out this giant nest at the zoo - look I am a bird too.
I can act just like a gorilla.
At the zoo again.
Saturday, May 24, 2008
Friday, May 23, 2008
Our Kids
All 5 of them just after we got home March 2008, and healthy at this point.
Practicing Karate.
Not quite sure what he is doing, but being silly for the camera.
Our first family photo all together with our two new boys, St. Patrick's Day, still healthy. Michael didn't have a green shirt, so he has a green four leaf clover drawn on his hand. Saturday, May 17, 2008
Our computer crashed bad. It took us two weeks to recover it and get the basics back. I haven't been able to get my email / outlook back up, although I was able to back it up as far as I can tell. I am hoping it is only a matter of time. Although we are slowly getting there, I am still limited. Everything takes longer. We adopted our two boys Joseph and Joshua thinking Michael was healthy and stable like all of our kids. Him getting sick threw us into a whirlwind of bills, and everyone is screaming for their money now. I wish I could get rid of one of our loans because that would at least make things feel sort of doable. Ah well. One day at a time, right? We are managing with our house payment, but the amount of gas we use has quadrupled with all the many Dr's appts, evaluations and follow ups.
Michael's Evan's syndrome with his platelets, red blood cells and white blood cells seems to have stabilized so praise God for that. His lab work is normal, and the medication is working. They even decreased his dosage. That is the great great news. The hematologist and rheumatologist both thought Michael may have Asperger's complicating the situation, which would explain a lot. So, they called in a psychology referral and had the initial evaluation. The psychologist agrees that a full assessment for Asperger's Syndrome is appropriate and that he may indeed have had it all along. It is just much more obvious now that he is sick. His thyroid has also stabilized and so they are keeping eyes on that; his last thyroid labs were normal. Another yeah.
Michael is very greatly struggling with many many digestion issues and a LOT of undigested food, many proteins such as meats, but also bread, veges, and fast food. The gastroenterologist evaluation was yesterday to check for that and gluten and lactose intolerance. They want to rule out celiac disease and a bunch of other stuff. We are also hoping to hear back soon on the bazillion labs the rheumatologist did a few weeks ago. He still gets headaches, joint pain etc. His knees have been swollen and painful. He does not get quite so tired though, so that is looking up. Maybe since his bloodwork is more stable.
Michael now has sunglasses he wears for the light whether the sun or in stores or buildings depending on how bright it is, how bothered he is, how he is feeling or if he has a headache. He does not seem to need to cover his arms and head in stores and lights quite so much, so we think that sensitivity may be more related to his eyes and probable Asperger's. He does still have to cover up in the sun during the day, but at least it makes it easier to get out in the evenings when he is up to it. It seems his neurological system and immune system just went haywire and that affected everything else. We are getting him more and more stable one body part at a time. They will be doing an echocardiogram in a couple weeks to check for fluid around his heart due to his on-going chest pain. He also will be getting a pulmonary function test. He started having difficulty breathing last night but at least it was only last evening for a few hours, so we are keeping a close eye on him. Hopefully not another new thing, although that is a new thing if you know what I mean.
Labs are still every week. The gas and Dr copays are the hardest, so we don't go out nearly as much as we used to and have really had to become homebodies. We are praying for financial miracles and for the Lord to help us out of this. The rheumatologist also wants Michael to have an evaluation by an opthalmologist to check out his eyes because of the on-going headaches and light sensitivity.
We did just hear this evening that Michael's platelets were normal at 318, and so hematology is decreasing his prednisone again and will be weaning Michael off of it over the next week or so. He is now down to 10 mg once a day, which is a huge huge difference from the gigantic doses he was taking at the beginning of April. Rheumatology told us his thyroid antibodies were actually elevated last they took them still at 168 (should be negative). That was another great improvement from the greater than 2,500 level in early April. The biggest concerns now are digestive (possible Celiac), chest pain and difficulty breathing (possible fluid around his heart), and the ongoing many other symptoms such as joint pain. Michael has had an aweful time walking today due to pain.
Michael also finally got his appt to see endocrinology later this month after waiting for 2 months. We are extremely grateful to the supervisor who helped us out with this. We would still be waiting without her.
We also found out that Joseph our 6 year old may need a pacemaker. He has pauses in between his heartbeats of 2.4 seconds, and at 3 seconds it can be dangerous and cause lack of oxygen to the brain. For now, he is stable enough that we are just watching him. He does get chest pain a few times a week, but it does not seem to slow him down otherwise. We are waiting because the risks of open heart surgery and the very complicated nature of the surgery he would need along with the possible need for a pacemaker just don't outweight the risks right now. The cardiologists both agreed that monitoring him over the next 6 months will be best unless his condition changes.
For all the many many gifts, we are immensely grateful. Michael received two DVD players (thank you Cathy and Tammy) within a day of each other. One he has set up in his room, and the other he has in a pack to take with him on the road. He also very generously received two gameboys (thank you again). Again, he is using one for home and the other in a pack to take with him on the road. It has been such a blessing. When we do get to get out usually to a McDonald's playplace because the kids can run around, Michael really likes being able to take the gameboy and DVD player with him to have something to do sitting down.
Michael has been blessed with clothes, pajamas, short and long sleeved shirts, and shorts. He even has received a hand sewn yoda robe, hand sewn yoda blanket, and a really cool quilt. We appreciate everyone's generosity towards making Michael more comfortable.
For those of you who have asked, any money which is donated will be used towards the children's on-going medical care especially medications, Dr copays, labs, gas for the van to get them there.
We are truly grateful for the financial gifts we have received. Every financial gift has been truly answers to prayers, and every single dollar is a miracle. Thank you, thank you, thank you. May the Lord bless each of you in your kindness and generosity towards our family and our children 1000 fold.
I am rebuilding my email database until such time when hopefully (crossing my fingers) and can get my outlook back up.
Michael and Gabriela have been working in a computerized school curriculum which was the best decision ever. Michael is doing better in school than he ever has and is passing his classes.
Thank you for all your support and prayers, and thank you for writing.
I have been feeling very overwhelmed and just praying from moment to moment for God's grace to get me through and wisdom to make the right decison for the children he has so graciously gifted us with.
Thank you for your listening ears, and I hope you don't mind my lengthy post.
In Christ and only for His glory,
Jennifer
Michael's Evan's syndrome with his platelets, red blood cells and white blood cells seems to have stabilized so praise God for that. His lab work is normal, and the medication is working. They even decreased his dosage. That is the great great news. The hematologist and rheumatologist both thought Michael may have Asperger's complicating the situation, which would explain a lot. So, they called in a psychology referral and had the initial evaluation. The psychologist agrees that a full assessment for Asperger's Syndrome is appropriate and that he may indeed have had it all along. It is just much more obvious now that he is sick. His thyroid has also stabilized and so they are keeping eyes on that; his last thyroid labs were normal. Another yeah.
Michael is very greatly struggling with many many digestion issues and a LOT of undigested food, many proteins such as meats, but also bread, veges, and fast food. The gastroenterologist evaluation was yesterday to check for that and gluten and lactose intolerance. They want to rule out celiac disease and a bunch of other stuff. We are also hoping to hear back soon on the bazillion labs the rheumatologist did a few weeks ago. He still gets headaches, joint pain etc. His knees have been swollen and painful. He does not get quite so tired though, so that is looking up. Maybe since his bloodwork is more stable.
Michael now has sunglasses he wears for the light whether the sun or in stores or buildings depending on how bright it is, how bothered he is, how he is feeling or if he has a headache. He does not seem to need to cover his arms and head in stores and lights quite so much, so we think that sensitivity may be more related to his eyes and probable Asperger's. He does still have to cover up in the sun during the day, but at least it makes it easier to get out in the evenings when he is up to it. It seems his neurological system and immune system just went haywire and that affected everything else. We are getting him more and more stable one body part at a time. They will be doing an echocardiogram in a couple weeks to check for fluid around his heart due to his on-going chest pain. He also will be getting a pulmonary function test. He started having difficulty breathing last night but at least it was only last evening for a few hours, so we are keeping a close eye on him. Hopefully not another new thing, although that is a new thing if you know what I mean.
Labs are still every week. The gas and Dr copays are the hardest, so we don't go out nearly as much as we used to and have really had to become homebodies. We are praying for financial miracles and for the Lord to help us out of this. The rheumatologist also wants Michael to have an evaluation by an opthalmologist to check out his eyes because of the on-going headaches and light sensitivity.
We did just hear this evening that Michael's platelets were normal at 318, and so hematology is decreasing his prednisone again and will be weaning Michael off of it over the next week or so. He is now down to 10 mg once a day, which is a huge huge difference from the gigantic doses he was taking at the beginning of April. Rheumatology told us his thyroid antibodies were actually elevated last they took them still at 168 (should be negative). That was another great improvement from the greater than 2,500 level in early April. The biggest concerns now are digestive (possible Celiac), chest pain and difficulty breathing (possible fluid around his heart), and the ongoing many other symptoms such as joint pain. Michael has had an aweful time walking today due to pain.
Michael also finally got his appt to see endocrinology later this month after waiting for 2 months. We are extremely grateful to the supervisor who helped us out with this. We would still be waiting without her.
We also found out that Joseph our 6 year old may need a pacemaker. He has pauses in between his heartbeats of 2.4 seconds, and at 3 seconds it can be dangerous and cause lack of oxygen to the brain. For now, he is stable enough that we are just watching him. He does get chest pain a few times a week, but it does not seem to slow him down otherwise. We are waiting because the risks of open heart surgery and the very complicated nature of the surgery he would need along with the possible need for a pacemaker just don't outweight the risks right now. The cardiologists both agreed that monitoring him over the next 6 months will be best unless his condition changes.
For all the many many gifts, we are immensely grateful. Michael received two DVD players (thank you Cathy and Tammy) within a day of each other. One he has set up in his room, and the other he has in a pack to take with him on the road. He also very generously received two gameboys (thank you again). Again, he is using one for home and the other in a pack to take with him on the road. It has been such a blessing. When we do get to get out usually to a McDonald's playplace because the kids can run around, Michael really likes being able to take the gameboy and DVD player with him to have something to do sitting down.
Michael has been blessed with clothes, pajamas, short and long sleeved shirts, and shorts. He even has received a hand sewn yoda robe, hand sewn yoda blanket, and a really cool quilt. We appreciate everyone's generosity towards making Michael more comfortable.
For those of you who have asked, any money which is donated will be used towards the children's on-going medical care especially medications, Dr copays, labs, gas for the van to get them there.
We are truly grateful for the financial gifts we have received. Every financial gift has been truly answers to prayers, and every single dollar is a miracle. Thank you, thank you, thank you. May the Lord bless each of you in your kindness and generosity towards our family and our children 1000 fold.
I am rebuilding my email database until such time when hopefully (crossing my fingers) and can get my outlook back up.
Michael and Gabriela have been working in a computerized school curriculum which was the best decision ever. Michael is doing better in school than he ever has and is passing his classes.
Thank you for all your support and prayers, and thank you for writing.
I have been feeling very overwhelmed and just praying from moment to moment for God's grace to get me through and wisdom to make the right decison for the children he has so graciously gifted us with.
Thank you for your listening ears, and I hope you don't mind my lengthy post.
In Christ and only for His glory,
Jennifer
Sunday, May 4, 2008
Update - Michael, Joseph, and the Richardson's
Michael lost a lot of weight when he got sick and did get to as low as 50 pounds, and it still fluctuates quite a bit. He has gained most of that weight back though. The doctor's also said they thought Michael was very hypothyroid when he got sick, but his thyroid has tested normal. So, the Prednisone is doing its job at least in that way.
We have been working out ways for Michael to get outside more during the days, and how to do that so he is more comfortable (heat, light, sun / uv exposure). He has a pair of sunglasses (not the ones the Dr recommended but a good start) that have some UV protection. He has a cowboy hat that he wears to keep the sun off his head, and then he wears long pants and long sleeved shirts. He has gloves for his hands (which really need replacing but at least they work for now). It seems to be the amount of and length of exposure to the sun and UV (found in flourescents). Then we have a sheet that we cover the window he sits next to in the van to keep the sun off him, and we make sure he brings a large bottle of water. So, far it seems to work pretty good. It works semi-well, and the better he gets the easier it is to get out. It seems kind of an ordeal, but at least he can get out of the house. We had to figure something out for going to the doctor's all the time. I took a picture and will have to upload it onto our blog. Michael looks like he is ready for a mission when he goes out ! It really is kind of funny, and Michael is a great sport.
The rheumatologist gave us a referral to psychology, and mentioned the possibility of Asperger's or High Functioning Autism (not sure of the difference). The hematologist then called psychology, and had them come up to speak with us and Michael for a consult. We talked with the Dr who said an evaluation would be a good idea, and thought that Michael very well might have Asperger's Syndrome. If that is the case, then he has always had it. It would explain several things, and is not the first time it has been mentioned. It has come up several times by various professionals over the years since we adopted him at 6 years old. We just didn't know who the correct person for an evaluation was or the importance until recently. It would explain his many over-sensitivities to smell, taste, touch, lights, noise, and his constant headaches. The sunglasses seem to have helped in that regard a great deal.
The Evan's is under great great control right now, and his blood work has been very stable. His platelets are normal, and he is no longer anemic. All of which are really great news. We have even been able to drop the dosage on his prednisone some, which is great.
Michael is on a new medication for on-going digestive problems, and will be evaluated by gastroenterology this month. His food apparently is not always being digested, and he has a lot of belly problems.
We have a long way to go to figure out what all is going on with him, but one thing at a time, and praising the Lord we will get there.
Our cardiologist for our 6 year old son Joseph, referred us to a pediatric cardiology specialist whom we have to follow up on this week. His Holter monitor showed he has been getting very low heartrates in the mornings, and it is enough to be concerning since he already had two open heart surgeries to repair Transposition of the Major Vessels. The way they repaired it the two major vessels are still backwards with a tunnel changing how his heart pumps the blood to his body. This is putting extra strain on his heart because the side that pumps the blood to HIS body is normally designed to pump blood only to the lungs, and isn't designed to work that hard. We are concerned he may need another heart surgery sooner than we thought.
We are learning great fortitude and better financial management through all of this. We are so blessed by every single one of our kids. Our God is amazing !!
On a positive note, Joseph 6, Joshua 4, and Shawna 2 all loving playing doctor together, it is quite cute. Michael turned 12 years old Thursday, and Joshua turned 5 years old yesterday. Gabriela is looking forward to her birthday later this month, and Joseh in early June. And then, Mother's Day coming up too.
A friend of ours, Cathy, was gracious to donate cake mixes for all the birthdays !! It has most definitely been a busy month.
Blessings to your family,
In Christ,
Jennifer
We have been working out ways for Michael to get outside more during the days, and how to do that so he is more comfortable (heat, light, sun / uv exposure). He has a pair of sunglasses (not the ones the Dr recommended but a good start) that have some UV protection. He has a cowboy hat that he wears to keep the sun off his head, and then he wears long pants and long sleeved shirts. He has gloves for his hands (which really need replacing but at least they work for now). It seems to be the amount of and length of exposure to the sun and UV (found in flourescents). Then we have a sheet that we cover the window he sits next to in the van to keep the sun off him, and we make sure he brings a large bottle of water. So, far it seems to work pretty good. It works semi-well, and the better he gets the easier it is to get out. It seems kind of an ordeal, but at least he can get out of the house. We had to figure something out for going to the doctor's all the time. I took a picture and will have to upload it onto our blog. Michael looks like he is ready for a mission when he goes out ! It really is kind of funny, and Michael is a great sport.
The rheumatologist gave us a referral to psychology, and mentioned the possibility of Asperger's or High Functioning Autism (not sure of the difference). The hematologist then called psychology, and had them come up to speak with us and Michael for a consult. We talked with the Dr who said an evaluation would be a good idea, and thought that Michael very well might have Asperger's Syndrome. If that is the case, then he has always had it. It would explain several things, and is not the first time it has been mentioned. It has come up several times by various professionals over the years since we adopted him at 6 years old. We just didn't know who the correct person for an evaluation was or the importance until recently. It would explain his many over-sensitivities to smell, taste, touch, lights, noise, and his constant headaches. The sunglasses seem to have helped in that regard a great deal.
The Evan's is under great great control right now, and his blood work has been very stable. His platelets are normal, and he is no longer anemic. All of which are really great news. We have even been able to drop the dosage on his prednisone some, which is great.
Michael is on a new medication for on-going digestive problems, and will be evaluated by gastroenterology this month. His food apparently is not always being digested, and he has a lot of belly problems.
We have a long way to go to figure out what all is going on with him, but one thing at a time, and praising the Lord we will get there.
Our cardiologist for our 6 year old son Joseph, referred us to a pediatric cardiology specialist whom we have to follow up on this week. His Holter monitor showed he has been getting very low heartrates in the mornings, and it is enough to be concerning since he already had two open heart surgeries to repair Transposition of the Major Vessels. The way they repaired it the two major vessels are still backwards with a tunnel changing how his heart pumps the blood to his body. This is putting extra strain on his heart because the side that pumps the blood to HIS body is normally designed to pump blood only to the lungs, and isn't designed to work that hard. We are concerned he may need another heart surgery sooner than we thought.
We are learning great fortitude and better financial management through all of this. We are so blessed by every single one of our kids. Our God is amazing !!
On a positive note, Joseph 6, Joshua 4, and Shawna 2 all loving playing doctor together, it is quite cute. Michael turned 12 years old Thursday, and Joshua turned 5 years old yesterday. Gabriela is looking forward to her birthday later this month, and Joseh in early June. And then, Mother's Day coming up too.
A friend of ours, Cathy, was gracious to donate cake mixes for all the birthdays !! It has most definitely been a busy month.
Blessings to your family,
In Christ,
Jennifer
Saturday, May 3, 2008
Our Computer Crashed !
Our computer crashed, and now more than 2 weeks later we are just getting the basics back up. Also, we think our video card is about to go, so we will have to fix that too.
We wanted to thank everyone for their emails of prayer, concern, and support during all of our latest challenges. It will take me a while to go through all the more than 1000 emails we have received while our computer was down, but we will get to them all.
More to come soon...
Jennifer
We wanted to thank everyone for their emails of prayer, concern, and support during all of our latest challenges. It will take me a while to go through all the more than 1000 emails we have received while our computer was down, but we will get to them all.
More to come soon...
Jennifer
Thursday, April 17, 2008
Michael's Story
When we found out Michael had Evan's Syndrome, I was surprised to learn it was listed on the National Rare Diseases list. It sure is a scary thing, and then to learn to deal with it and LUPUS and everything else he's got and come to terms with the fact that our child has these lifelong conditions too. It is a lot, and I am finding it really tough too.
A Story of Comfort
The story that has given me the most comfort this week is from Matthew 14 and Mark 6 when out in the boat went the disciples. While out in the boat, the winds got worse, and a big storm came. The disciples were afraid the boat would sink. Over the wind and the waves, Jesus called. Come Peter. Peter stepped out of the boat and walked on the water to Jesus. And even when Peter's faith failed him, Jesus reached out His hand and lifted him up. Peter could not do it alone, but only with Jesus. If Peter was ok, then I believe we will make it too.
I also really like the story about how Jesus was asleep in the boat and calmed the waves. We have our own storm here Lord, and feel like we are sinking. Please come and calm our storm.
Michael takes 2 or 3 naps a day for fatigue. Before he got sick, he didn't really take any. He does get up and move around and do things during each day though now, so I am relieved that he is at least doing that. Each day, we are trying to figure out what his limits are and learning as we go.
A Scary Thing:
Michael apparently has to limit his time in the sun and limit his exposure to sunlight. He has been outside playing, and several times in a row, he had really bad reactions and feeling awful even in less than 30 minutes to 2 hours (certainly by the next day). It seems directly related to how long he is outside in the sun. The scariest was when we were running errands, and Michael felt so awful that he was yelling and crying. He was nauseous, said his whole body hurt and felt hot. He really scared us. We have a hooded windbreaker that Michael uses now to cover his head and arms, and pants for his legs, which seems to help. Another thing to adjust to and ask the rheumatologist about.
Praises Though:
Praise God, Michael does really great in the early evening (dusk) and at night, and we can see the difference in his energy. Michael is able to be up and around, and asked to get out and doing more normal things again. That is such a good sign, and is great for his spirits. Sooooo, Michael is going out with his dad tonight for some very much needed Father and Son time without his brothers and sisters (or mom) around. I am really glad to see Michael doing normal things.
Michael prefers gentle hugs now because it hurts to get squeezed, so we do more gentle hugs and kisses and caressing his face which is just about the only part of his skin which does not hurt. Anyone who really knows Michael, knows he used to love to be tickled lots and lots. Michael's skin is very sensitive now and hurts him most days. He also struggles with itchy skin, and numbness in his hands and feet. He also has some new bruises, which are always concerning because of the concern over his platelets. He still has many bruises on his legs that have been there a long long time, and run along his veins. He still has joint pain, neck, shoulders, elbows, arms, knees, ankles, and even his jaw hurts. He gets stomach aches everyday, and still gets this little pink heat rash on his face from time to time; fortunately though the rash has not been serious.
Things to praise the Lord over:
It has been 2 or 3 days since Michael has had a headache, and he has not had any nosebleeds since Sunday which is a really good sign. Yeah !!
New Problems:
Some new things that we will be asking the rheumatologist about, Michael has been having pain in his sides every day this week as well as his chest. We are watching him, and he does not have any shortness of breath though. So, it seems more skin, muscles, and bone related than anything else (we hope). He has also been having back pain every day, and Michael gets stiffness in his legs too.
More praises:
Many of Michael's bruises all over his arms, stomach, back and head have cleared up or faded a lot. Praise the Lord for platelets that work ! Michael is getting back into school work each day, and we have encouraged him to journal his feelings and all that is going on with him. His fingers hurt though, so it is for shorter periods through the day.
More praises:
Last Friday, we rushed Michael over to the doctor's office because he was having difficulty swallowing even just water and episodes of choking on his food. We learned Michael was pretty seriously dehydrated and had thrush too. So, he started on another medication (number 3) and has been pushing the fluids. It has been slow, but Michael's throat is beginning to feel better and is not so swollen. He was on just liquids for a while, and then soft easy to swallow things. Now yesterday and today, Michael has been eating soft regular food. Thank you Maura and Ellen for your donations. Michael loves the Ramen, and has been eating it again. He lost 13 pounds, down to 50 pounds and has been slowly gaining that back now that he is eating again. Michael really enjoyed the Ramen a lot now that his throat does not hurt so much. The doctor's say they may keep him on a low dose of the medication because his immune system is not able to fight off even his own natural body flora (the bacteria we all carry that our body normally just keeps under control).
Michael is pretty quiet about his pain and discomfort and puts on his best face for everyone. He is such a trooper. It was so nice to start seeing Michael's smile again through all of this, and he seems to have kept his sense of humor. There are moments when Michael is in a great deal of pain and feels like he is dying, so we help as best we can and remind him that he is not dying and will feel better soon.
Michael likes playing video games and pretending the bad guys are the lupies and the other bad things he's got, and beat them all. We are trying to find a computer based school curriculum for Michael to use that is reliable and well rated to help with his hands. Someone suggested Switched on Schoolhouse, so we are checking into that.
Thank you everyone for your much needed support.
Prayer Requests:
That the rheumatologist will see Michael tomorrow instead of next week
For All of Michael's symptoms and healing
For all the medical bills piling up
For Our Ability To Cope - all of us
For God's comfort to all parents of special needs children and the daily walk
Blessings In Christ To Each Of You,
Jennifer Richardson
www.richardsonstudios.blogspot.com
A Story of Comfort
The story that has given me the most comfort this week is from Matthew 14 and Mark 6 when out in the boat went the disciples. While out in the boat, the winds got worse, and a big storm came. The disciples were afraid the boat would sink. Over the wind and the waves, Jesus called. Come Peter. Peter stepped out of the boat and walked on the water to Jesus. And even when Peter's faith failed him, Jesus reached out His hand and lifted him up. Peter could not do it alone, but only with Jesus. If Peter was ok, then I believe we will make it too.
I also really like the story about how Jesus was asleep in the boat and calmed the waves. We have our own storm here Lord, and feel like we are sinking. Please come and calm our storm.
Michael takes 2 or 3 naps a day for fatigue. Before he got sick, he didn't really take any. He does get up and move around and do things during each day though now, so I am relieved that he is at least doing that. Each day, we are trying to figure out what his limits are and learning as we go.
A Scary Thing:
Michael apparently has to limit his time in the sun and limit his exposure to sunlight. He has been outside playing, and several times in a row, he had really bad reactions and feeling awful even in less than 30 minutes to 2 hours (certainly by the next day). It seems directly related to how long he is outside in the sun. The scariest was when we were running errands, and Michael felt so awful that he was yelling and crying. He was nauseous, said his whole body hurt and felt hot. He really scared us. We have a hooded windbreaker that Michael uses now to cover his head and arms, and pants for his legs, which seems to help. Another thing to adjust to and ask the rheumatologist about.
Praises Though:
Praise God, Michael does really great in the early evening (dusk) and at night, and we can see the difference in his energy. Michael is able to be up and around, and asked to get out and doing more normal things again. That is such a good sign, and is great for his spirits. Sooooo, Michael is going out with his dad tonight for some very much needed Father and Son time without his brothers and sisters (or mom) around. I am really glad to see Michael doing normal things.
Michael prefers gentle hugs now because it hurts to get squeezed, so we do more gentle hugs and kisses and caressing his face which is just about the only part of his skin which does not hurt. Anyone who really knows Michael, knows he used to love to be tickled lots and lots. Michael's skin is very sensitive now and hurts him most days. He also struggles with itchy skin, and numbness in his hands and feet. He also has some new bruises, which are always concerning because of the concern over his platelets. He still has many bruises on his legs that have been there a long long time, and run along his veins. He still has joint pain, neck, shoulders, elbows, arms, knees, ankles, and even his jaw hurts. He gets stomach aches everyday, and still gets this little pink heat rash on his face from time to time; fortunately though the rash has not been serious.
Things to praise the Lord over:
It has been 2 or 3 days since Michael has had a headache, and he has not had any nosebleeds since Sunday which is a really good sign. Yeah !!
New Problems:
Some new things that we will be asking the rheumatologist about, Michael has been having pain in his sides every day this week as well as his chest. We are watching him, and he does not have any shortness of breath though. So, it seems more skin, muscles, and bone related than anything else (we hope). He has also been having back pain every day, and Michael gets stiffness in his legs too.
More praises:
Many of Michael's bruises all over his arms, stomach, back and head have cleared up or faded a lot. Praise the Lord for platelets that work ! Michael is getting back into school work each day, and we have encouraged him to journal his feelings and all that is going on with him. His fingers hurt though, so it is for shorter periods through the day.
More praises:
Last Friday, we rushed Michael over to the doctor's office because he was having difficulty swallowing even just water and episodes of choking on his food. We learned Michael was pretty seriously dehydrated and had thrush too. So, he started on another medication (number 3) and has been pushing the fluids. It has been slow, but Michael's throat is beginning to feel better and is not so swollen. He was on just liquids for a while, and then soft easy to swallow things. Now yesterday and today, Michael has been eating soft regular food. Thank you Maura and Ellen for your donations. Michael loves the Ramen, and has been eating it again. He lost 13 pounds, down to 50 pounds and has been slowly gaining that back now that he is eating again. Michael really enjoyed the Ramen a lot now that his throat does not hurt so much. The doctor's say they may keep him on a low dose of the medication because his immune system is not able to fight off even his own natural body flora (the bacteria we all carry that our body normally just keeps under control).
Michael is pretty quiet about his pain and discomfort and puts on his best face for everyone. He is such a trooper. It was so nice to start seeing Michael's smile again through all of this, and he seems to have kept his sense of humor. There are moments when Michael is in a great deal of pain and feels like he is dying, so we help as best we can and remind him that he is not dying and will feel better soon.
Michael likes playing video games and pretending the bad guys are the lupies and the other bad things he's got, and beat them all. We are trying to find a computer based school curriculum for Michael to use that is reliable and well rated to help with his hands. Someone suggested Switched on Schoolhouse, so we are checking into that.
Thank you everyone for your much needed support.
Prayer Requests:
That the rheumatologist will see Michael tomorrow instead of next week
For All of Michael's symptoms and healing
For all the medical bills piling up
For Our Ability To Cope - all of us
For God's comfort to all parents of special needs children and the daily walk
Blessings In Christ To Each Of You,
Jennifer Richardson
www.richardsonstudios.blogspot.com
Wednesday, April 9, 2008
Updates on Michael
Michael was feeling pretty blah and extra tired today. He is having pain in his knees, shoulders, chest, back, neck. He is struggling with eating and drinking. He has a hard time most of the time anyway with feeling thirsty until he is at the extremes of thirst (not your average issue at all), and his medicine makes him feel full all the time. It was hard to get him to have anything until late tonight. He also said his hair was driving him crazy and was so adamant that he didn't want it anymore. He kept asking and asking and asking to please just shave his head. His skin seems to be real sensitive now. Well, his platelets are too low for that, so we trimmed it short with a scissor cut (mom's not so great job), until his platelets are high enough to have it done by a barbor. He loves it ! It is kind of choppy, but he really likes it. So, I guess I won't worry since he isn't. Michael got this beautiful white bear holding a heart at CHOC when he was in the hospital from a little mini carnival they had for the kids. He gave it to me and said here mom this is for you and don't share it. Oh, my heart melted. Joseph (Tristan) and Joshua (Wyatt) were also excited to get toys, cars and trucks to play with. Joseph wanted to hug Michael all the time bless his soul. He was really really worried about Michael.
Jennifer
Jennifer
GabrielaEileen
Gabriela is really looking forward to being 10 years old, and is excited to say she is up to my chin. Before I know it, she is going to be taller than me. Of course that is not hard to do. She likes putting on make up and doing her nails. She enjoys getting all fancied up. We love her laugh and smile.
Jennifer
Jennifer
Joshua (Wyatt)
Joshua is a quiet soul. He does not yell or scream, but when he really laughs it is a great belly laugh. He is a very good eater. He likes to play Darth Vader and wear Michael's Darth Vader mask. He also is so gentle when he plays with Shawna. Joshua and Shawna play animals where they go around the house making animal noises or carrying stuffed animals around playing together. He is a really sweet kid.
Jennifer
Jennifer
Tuesday, April 8, 2008
Joseph (Tristan) loves the trucks !
Joseph loves to play with the trucks and cars. We goes all over the house driving them around. He loves everyone and is always there to give hugs. He really enjoys cleaning, and is the best 6 year old sweeper I have ever seen. He even does a semi-descent job straightening his bed up in the morning. We all love his laugh and giggles.
Jennifer
Jennifer
Shawna tried going in the potty !
My little girl is growing up. She wanted to be just like Michael. She was so excited to put on big girl panties. She is such a joy !
Jennifer
Jennifer
Michael is very ill !
Michael has been very very ill. Was in CHOC this past week. I will update and post more, but wanted to write this at least. He is finally home and slowly feeling better, although he gets tired pretty easily.
Blessings to you,
Jennifer
Blessings to you,
Jennifer
Our beautiful boys !! What an honor to have them part of our family !
Joseph Noah is coloring the eggs and playing guitar; he goes by Tristan. Joshua John is smiling big and practicing his B's; he goes by Wyatt.
Blessings,
Jennifer Richardson
Tuesday, March 18, 2008
5 Children and Nicely Spread Out
So here we are - -
I am blessed to say we have 5 children, three boys and two girls.
Michael 11
Gabriela 9
Tristan 6
Wyatt 4
Shawna 2
After everyone's birthday this year, the age spread is 12, 10, 7, 5 and 2.
Shawna's birthday was in February. Everyone else's birthday is all within 2 ans 1/2 months span, April, May and mid June. Easter plus two birthdays in April. Three birthdays in May, and one in June.
Thank you Lord for your amazing blessings !
Jennifer Richardson
I am blessed to say we have 5 children, three boys and two girls.
Michael 11
Gabriela 9
Tristan 6
Wyatt 4
Shawna 2
After everyone's birthday this year, the age spread is 12, 10, 7, 5 and 2.
Shawna's birthday was in February. Everyone else's birthday is all within 2 ans 1/2 months span, April, May and mid June. Easter plus two birthdays in April. Three birthdays in May, and one in June.
Thank you Lord for your amazing blessings !
Jennifer Richardson
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