This month has proven to be extremely busy. I haven't really found out anymore about Darein but she is doing well. She was able to go to school every day last week without getting sick and made it through this week as well. I received her doctor's note from the urologist stating that he assumes the stones have moved into her digestive tract and stating that they had been present for the previous two months. As much as we have going on this month, me and Shane have decided to take a break and will call her pediatrician next month once school is out to proceed with the next step in her care. She has already missed lots of school due to not feeling well and she is scheduled to see her GI doctor in June so we don't want to pull her out of school for more tests and appointments unless necessary. She has been doing a great job with her back brace. We are up to 14 hours tonight and she has done a fantastic job of wearing it. She decided to take a break for a couple of hours this evening as she wasn't feeling real great and had a headache. We took it off for two hours and then placed it back on her to finish her time up. She is only 4-6 hours away from the goal of 18 - 20 hours a day.
In the meantime, Damein has been having about 3 baseball games a week which has kept us quite busy. He is doing well and was on the high school sports show on the radio the other day and did a great job with his teammates speaking. We have been busy getting him ready for his senior prom. He didn't go to prom last year and so this is a big deal for all of us this year. We met his prom date last weekend at the tuxedo place and picked out his tuxedo. I can't wait to see him in it! Her dress is bright pink and so we picked out a patterned pink vest and solid pink tie with a black tux and white undershirt. I haven't seen him in a tux since my sister's wedding when he was about 3 years old!! We go tomorrow to pick out her corsage and his boutonniere. Prom is Saturday and he is going to pick his date up at her house where we will get pictures and then follow them over to a friend's house where they will meet 9 other couples and all the parents can take pictures. They are going to eat at a little Italian restaurant downtown and then head over to prom!
Shane is taking the week off and we are going to help his mom clean some things out at her house and then have a big garage sale over the following weekend! Lots of repairs and work to be done.
Damein is set up for his orientation at the University of Missouri for this summer! We head up there for two days in June. I still have to reserve our hotel room. I will be calling tomorrow or Monday to get Damein set up in a room at the dorms and then have to call and get him set up for Fraternity Rush which is the next day after orientation is over. He and his friend will be attending the Fraternity orientation to see if they want to join a fraternity and if so, which one they are interested in. Thankfully, we will be carpooling with another couple so that we can leave on the 2nd day after orientation while the boys stay another evening for their fraternity orientation.
Time seems to be flying by so fast this year already!! Before I know it, Damein will be graduating in a couple of weeks. We will be taking care of his graduation and graduation parties and finishing baseball up in May and then we move into June where it will be time to head back to St. Louis for a back brace check up for Darein and Freshman orientation at college for Damein. In the middle of the busy schedule me and Darein will also be participating in different fundraisers to help raise money for the Acteens Blume trip in Orlando Florida in July. Darein and I will be attending the trip with her Acteen group for about 4 days and Darein is super excited! We get to stay on the Walt Disney World Resort, get passes to Disney World and Epcot Center, attend a day at Epcot Center with other Christian girls to learn about missions and Darein gets to ride on an airplane for the first time in her life, which she is looking forward to very much :)
We are still waiting to hear from the Social Services Department to see what, if anything that Darein might qualify for for help with her medical bills. I called the other day and they promised me they would go ahead and get her records sent over to the medical review board and so now we wait some more. Damein should also be receiving his ACT results next week sometime so we can see if he scores well enough to qualify for any other scholarships. He wants to take it in June as well and he was told by his high school counselor that we could check back with FAFSA in June and see if anyone turned anything down that he might be able to receive, benefits wise. We still also have a few more things to fill out with the college as well. August will be here before we know it and it will be move in day for Damein for college and back to school for Darein. I am trying to slow things down as much as possible but it seems as though there is so much to do and not enough time to get everything done. I just want to take so much time to enjoy my son before he heads off to college, such an adjustment. The more time I want to spend with him, the more he is wanting to spend time with his friends that he will miss :)
In every season, there is a time for change and these are one of those seasons with so many changes. I have been looking around lately and noticed so many beautiful Dogwood trees. As we enter this Easter weekend I am reminded by the Dogwood trees of a beautiful poem that I would like to leave you with.
THE DOGWOOD TREE
Anonymous
When Christ was on earth, the dogwood grew
To a towering size with a lovely hue.
Its branches were strong and interwoven
And for Christ's cross its timbers were chosen
Being distressed at the use of the wood
Christ made a promise which still holds good:
"Not ever again shall the dogwood grow
To be large enough for a tree, and so
Slender and twisted it shall always be
With cross-shaped blossoms for all to see.
The petals shall have bloodstains marked brown
And in the blossom's center a thorny crown.
All who see it will think of Me,
Nailed to a cross from a dogwood tree.
Protected and cherished this tree shall be
A reflection to all of My agony."
Happy Easter All!!
Thursday, April 21, 2011
Monday, April 11, 2011
With Answers Come More Puzzles
I received a call this morning from Darein's urology surgeon's office stating that the doctor had reviewed the xrays and ultrasounds and found that the densities had moved and were now in her digestive tract and were found moving on the film. It is still unclear what these are but it is now clear that they are not kidney or gallstones. Her kidneys, bladder, and gallbladder look good. He is referring her back to her pediatrician for further follow up. The nurse recommended that maybe we would want her GI doctor to take a look at her and said that the pediatrician might want to do a CT but it definitely was not stones. So now, Darein is getting sick to her stomach weekly and we are back at square one trying to figure out why.
I think that it could possibly be allergies as we have added animals back into our home as Darein loves to be around them so much. I will place her on some Claritin and see if this helps any. I did call her GI doctor to set up an appointment and he will see her towards the end of June. In the meantime, I will work with Darein and the Claritin to try to rule out allergies. I also will call her pediatrician in a few weeks to discuss if she wants to run any tests or not prior to her appointment with the GI doctor. I also want to discuss with her if Darein needs insoles, orthopedic shoes or needs to have her orthopedic doctor who is treating her scoliosis see her and treat her for her flat feet. I did find out over the weekend that her dad had flat feet when he was little and had to have orthopedic shoes so it is genetic and not from her syndrome.
Overall, Darein is doing well with her back brace. She worked up to 4 hours today with it. As we have started the school week, we will start incorporating her wearing her brace in the evening as well as start having her sleep in it in order to increase her hours as needed. Hopefully by next week she will be able to start wearing it to school.
Hope everyone got their work week started off good and have a great rest of the week!
I think that it could possibly be allergies as we have added animals back into our home as Darein loves to be around them so much. I will place her on some Claritin and see if this helps any. I did call her GI doctor to set up an appointment and he will see her towards the end of June. In the meantime, I will work with Darein and the Claritin to try to rule out allergies. I also will call her pediatrician in a few weeks to discuss if she wants to run any tests or not prior to her appointment with the GI doctor. I also want to discuss with her if Darein needs insoles, orthopedic shoes or needs to have her orthopedic doctor who is treating her scoliosis see her and treat her for her flat feet. I did find out over the weekend that her dad had flat feet when he was little and had to have orthopedic shoes so it is genetic and not from her syndrome.
Overall, Darein is doing well with her back brace. She worked up to 4 hours today with it. As we have started the school week, we will start incorporating her wearing her brace in the evening as well as start having her sleep in it in order to increase her hours as needed. Hopefully by next week she will be able to start wearing it to school.
Hope everyone got their work week started off good and have a great rest of the week!
Saturday, April 9, 2011
A Day In St. Louis
We took Darein to St. Louis yesterday and so I thought I would give an update on how things went. We did receive help from Children's Miracle Network for traveling expenses and they are going to reimburse us for the money we are out for Darein's brace. This is a great organization! The application process was very simple as well as the interview process. We have used them in the past but forgot how much it helps and how nice the staff up there is. They are really a great group of people to work with! We decided to make the trip in one day as Damein had a baseball game Thursday night and we decided we would get close to the same amount of sleep whether we left that night or waited until morning.
Our first appointment of the day was to head to the orthotic lab where Darein's back brace was made. They had her try it on and then would take it off and trim a few spots here and there to make it fit her a little better. It is a hard plastic brace with soft padding on the inside. She has to work up to wearing it for 18 - 20 hours a day. Once we were done getting it fitted a little better to her we headed over to the orthopedic doctor's office. The doctor came in and saw her and talked briefly. I'm not a fan of her doctor right now as he has the ego of a surgeon going on and his ego is quite huge. He is a great doctor I think, I am just going to have to talk to him quite a bit on things and push my questions and concerns in order to get a better repoire with him. I haven't ran into this issue too much but usually when I have, I find that if I just let them know that I am a concerned parent and that I do take an interest in my child then they get a little better over time. He doesn't know anything about Darein's Antley-Bixler syndrome and therefore treats her as any other child. He was pretty harsh about her weight and the fact that the more she loses the better off she will be as far as her scoliosis. I know that he has valid points and I understand where he is coming from but he doesn't know how much she has already lost and the fact that her weight was put on by all of the medication she had to take when her Chronic Regional Pain Syndrome was flared up. He will over time, learn these issue and I chose my battles this time carefully. Darein's main concern was that the back brace would help with her pain. Unfortunately, he said that it might help but that was not the purpose of the brace. He did not offer her any kind of relief for her pain other than to state that she needs to remain active and the more weight she gets off the better she will feel. I left things there for now. He measured her curve with a scoliometer and said that the curve was the same as last time. Even though he requested we bring the xrays up from Springfield again so that they could enter them in their system, he did not take them today and told us to bring them again next time so they could compare them to the xrays that they would be taking when he sees her back in two months. We will take the xrays up there one more time and then if they refuse to take them from us at that time, I will not bring them up there anymore as they will have the initial xray they need from their hospital. He thought the brace fits good and said that she can do anything in it but swim, bathe or tumble in it. She wore it one hour yesterday once we got home and we will increase it by one hour a day for a couple of weeks until she is able to wear it the length of time that she needs. We will go back to see him in June, get an xray, have the brace adjusted and padding added anywhere that is necessary and see where we are at at that time.
Once that appointment was over we drove around St. Louis a little bit looking for some place to eat before our next appointment with Darein's geneticist. I knew that Shane had told me that Springfield was known for its restaurants but I guess I never fully appreciated that fact until yesterday. We drove all over trying to find a restaurant, I couldn't believe that basically they only have restaurants in certain areas of St. Louis and then you have your choices. We finally decided on Captain D's which was one of two restaurants between the two hospitals. We showed up at Cardinal Glennon hospital for our last appointment of the day after lunch. We were going to meet with Darein's geneticist who has seen her since birth. Darein saw him until the age of 10 which is when he diagnosed her. Once he diagnosed her, he had an opportunity in North Carolina and moved there. I have kept in contact with him over the past 4 1/2 years via email as he is the only geneticist that knows much about Darein's syndrome. He had asked for some information on Darein's progress as well as some recent photos a few years ago so that he could send some information over to the United Kingdom where they continue to research Darein as well as other children with this syndrome. He told me yesterday that the article from that research is not quite ready yet but that physicians told him that she was getting close to being done with it. Darein's geneticist was extremely excited to see her and so very impressed with how well she was doing. He made sure to let her know that she was rewriting medical journals and offering other families lots of hope by her progress as she is one of the oldest children with this syndrome still alive. He tried to emphasize to her the importance of all of the research that she does and how much hope it offers other families. He asked questions about how she was doing and performed his typical physical exam. We talked about several things of concern as we as parents are still trying to figure out Darein's prognosis in life and trying to anticipate any issues we need to be sensitive to. He showed us how bad her curve was, which I hadn't had a chance to get a good look at up until this point. He stated that everything going on with her is related to her Antley-Bixler syndrome and the only thing that he's not sure about is the chronic regional pain syndrome. He says it is like "phantom" pain, which is where you lose a limb and have pain where that limb should be. Only obviously, she still has her limb. He says that a lot is not known about chronic regional pain syndrome and doctors don't understand it and are still continuing to learn about it and the causes, etc. He was concerned about how stiff her ankles are now as he doesn't remember them ever being that stiff before. He checked her other joints and her shoulders, elbows and hips have limited movement in them as well and are somewhat stiff. He found it peculiar that her knees however were not stiff, which he would have expected them to be. I told him that Darein was complaining more and more of overall joint pain so he made note of it. I also told him that she had some fused bones in her ankles as well as in the top of her ribs. Since Antley-Bixler syndrome is a musculoskeletal issues, her bones and how they develop is very important to our knowledge of this disease. Most children with this syndrome have had organ issues and therefore haven't lived to the point of puberty and so not much is known about how this syndrome will affect her bones and bone growth as she enters this age and the problems that it may or may not cause.
He also had her walk barefoot and it was noted that her ankles roll in and she is extremely flat footed. We talked about the need to get her some insoles to wear in order to help this issue. I will also start doing more physical therapy on Darein regularly to try and loosen her joints up and see if this helps.
We talked about the abnormal labs when we tried to take her off of one of her medications for her adrenal hyperplasia and talked once again about the fact that she does not have typical congenital adrenal hyperplasia and there are still puzzles with her and this disease.
I asked him if I should be concerned about any of her organs failing since most of the other kids have had problems with this. He stated that her heart is in good shape so no worries there. He said that as far as her lungs go, they should be fine. Where she will have problems with her lungs is if her curve gets bad enough that it compresses the lung that she is curving towards and will expand the other lung as there will be more room on that side. He said it would make her more susceptible to pneumonia and respiratory issues and illnesses but that with her seeing an orthopedic doctor for the scoliosis as us being aware that she has scoliosis, hopefully they will be able to control the curve with either the brace or surgery before it gets to that point. He stated that he is concerned about her adrenal glands as her adrenal hyperplasia is not typical and because of the fact that she is having to be on estrogen at this time. He is concerned of other issues that might come up through adolescence but says that we will just watch her for now. His other concern was with her kidneys as she has the left kidney reflux and spastic bladder. He says that we won't know how it will affect her kidneys at this time and that she just needs to keep up with those appointments. He was glad that she is not having to see a nephrologist at this time for any of those issues. He said that her endocrinologist just needs to continue to monitor her adenoma on her pituitary gland as that is the only thing that can be done with these unless they start changing and then decisions have to be made. Hopefully, it will remain unchanged and we will just follow with yearly MRI's.
He stated that the doctor in England (UK) wants some more research for another article that he is going to write. Therefore, he needs lab work as well as a 24 hour urinalysis. We were given the necessary equipment and instructions to get the 24 hour urinalysis and will take care of this a couple of days prior to her next appointment in St. Louis in June. We will collect this and then show up to turn it in and then labs will be drawn and everything will be shipped at once overseas. He will not see her at that time but has agreed to see her once a year now that he is closer to us again. He is an incredible doctor and encouraged me to still keep up via email if there are any issues that might be of concern to him.
Overall, it was a very productive day and it is nice to have a physician close again that can give us information about her syndrome. I do what research I can online but again, not much of the information applies to Darein so I can only use that information to get a worse case scenario of things and a general idea of issues that others have dealt with. We mostly just continue to watch her and enjoy how well she is doing. Her geneticist was very excited to get a good vibe about how good Darein's self esteem is and to know that she is sociable and was nominated for homecoming attendant for her grade.
I called Kansas City on Tuesday and still have not received a call back about her possible stones. I will wait until Monday afternoon and then if I still have not heard any more then I will call and see where we are at on that. I will check on insoles and see about finding a place that can customize some for Darein. If we are still having issues then we will talk further to her pediatrician about what else to do. I still need to call and schedule her a hearing test as we think her hearing isn't as good as it was when she started school. Now that things are starting to calm down a little, I can have a little time hopefully to make these phone calls and set these appointments up and continue moving forward on other issues.
Hope everyone has a great weekend and very thankful that our government has decided not to shut down for now and we are all able to enjoy our National Parks for a little while longer :)
Our first appointment of the day was to head to the orthotic lab where Darein's back brace was made. They had her try it on and then would take it off and trim a few spots here and there to make it fit her a little better. It is a hard plastic brace with soft padding on the inside. She has to work up to wearing it for 18 - 20 hours a day. Once we were done getting it fitted a little better to her we headed over to the orthopedic doctor's office. The doctor came in and saw her and talked briefly. I'm not a fan of her doctor right now as he has the ego of a surgeon going on and his ego is quite huge. He is a great doctor I think, I am just going to have to talk to him quite a bit on things and push my questions and concerns in order to get a better repoire with him. I haven't ran into this issue too much but usually when I have, I find that if I just let them know that I am a concerned parent and that I do take an interest in my child then they get a little better over time. He doesn't know anything about Darein's Antley-Bixler syndrome and therefore treats her as any other child. He was pretty harsh about her weight and the fact that the more she loses the better off she will be as far as her scoliosis. I know that he has valid points and I understand where he is coming from but he doesn't know how much she has already lost and the fact that her weight was put on by all of the medication she had to take when her Chronic Regional Pain Syndrome was flared up. He will over time, learn these issue and I chose my battles this time carefully. Darein's main concern was that the back brace would help with her pain. Unfortunately, he said that it might help but that was not the purpose of the brace. He did not offer her any kind of relief for her pain other than to state that she needs to remain active and the more weight she gets off the better she will feel. I left things there for now. He measured her curve with a scoliometer and said that the curve was the same as last time. Even though he requested we bring the xrays up from Springfield again so that they could enter them in their system, he did not take them today and told us to bring them again next time so they could compare them to the xrays that they would be taking when he sees her back in two months. We will take the xrays up there one more time and then if they refuse to take them from us at that time, I will not bring them up there anymore as they will have the initial xray they need from their hospital. He thought the brace fits good and said that she can do anything in it but swim, bathe or tumble in it. She wore it one hour yesterday once we got home and we will increase it by one hour a day for a couple of weeks until she is able to wear it the length of time that she needs. We will go back to see him in June, get an xray, have the brace adjusted and padding added anywhere that is necessary and see where we are at at that time.
Once that appointment was over we drove around St. Louis a little bit looking for some place to eat before our next appointment with Darein's geneticist. I knew that Shane had told me that Springfield was known for its restaurants but I guess I never fully appreciated that fact until yesterday. We drove all over trying to find a restaurant, I couldn't believe that basically they only have restaurants in certain areas of St. Louis and then you have your choices. We finally decided on Captain D's which was one of two restaurants between the two hospitals. We showed up at Cardinal Glennon hospital for our last appointment of the day after lunch. We were going to meet with Darein's geneticist who has seen her since birth. Darein saw him until the age of 10 which is when he diagnosed her. Once he diagnosed her, he had an opportunity in North Carolina and moved there. I have kept in contact with him over the past 4 1/2 years via email as he is the only geneticist that knows much about Darein's syndrome. He had asked for some information on Darein's progress as well as some recent photos a few years ago so that he could send some information over to the United Kingdom where they continue to research Darein as well as other children with this syndrome. He told me yesterday that the article from that research is not quite ready yet but that physicians told him that she was getting close to being done with it. Darein's geneticist was extremely excited to see her and so very impressed with how well she was doing. He made sure to let her know that she was rewriting medical journals and offering other families lots of hope by her progress as she is one of the oldest children with this syndrome still alive. He tried to emphasize to her the importance of all of the research that she does and how much hope it offers other families. He asked questions about how she was doing and performed his typical physical exam. We talked about several things of concern as we as parents are still trying to figure out Darein's prognosis in life and trying to anticipate any issues we need to be sensitive to. He showed us how bad her curve was, which I hadn't had a chance to get a good look at up until this point. He stated that everything going on with her is related to her Antley-Bixler syndrome and the only thing that he's not sure about is the chronic regional pain syndrome. He says it is like "phantom" pain, which is where you lose a limb and have pain where that limb should be. Only obviously, she still has her limb. He says that a lot is not known about chronic regional pain syndrome and doctors don't understand it and are still continuing to learn about it and the causes, etc. He was concerned about how stiff her ankles are now as he doesn't remember them ever being that stiff before. He checked her other joints and her shoulders, elbows and hips have limited movement in them as well and are somewhat stiff. He found it peculiar that her knees however were not stiff, which he would have expected them to be. I told him that Darein was complaining more and more of overall joint pain so he made note of it. I also told him that she had some fused bones in her ankles as well as in the top of her ribs. Since Antley-Bixler syndrome is a musculoskeletal issues, her bones and how they develop is very important to our knowledge of this disease. Most children with this syndrome have had organ issues and therefore haven't lived to the point of puberty and so not much is known about how this syndrome will affect her bones and bone growth as she enters this age and the problems that it may or may not cause.
He also had her walk barefoot and it was noted that her ankles roll in and she is extremely flat footed. We talked about the need to get her some insoles to wear in order to help this issue. I will also start doing more physical therapy on Darein regularly to try and loosen her joints up and see if this helps.
We talked about the abnormal labs when we tried to take her off of one of her medications for her adrenal hyperplasia and talked once again about the fact that she does not have typical congenital adrenal hyperplasia and there are still puzzles with her and this disease.
I asked him if I should be concerned about any of her organs failing since most of the other kids have had problems with this. He stated that her heart is in good shape so no worries there. He said that as far as her lungs go, they should be fine. Where she will have problems with her lungs is if her curve gets bad enough that it compresses the lung that she is curving towards and will expand the other lung as there will be more room on that side. He said it would make her more susceptible to pneumonia and respiratory issues and illnesses but that with her seeing an orthopedic doctor for the scoliosis as us being aware that she has scoliosis, hopefully they will be able to control the curve with either the brace or surgery before it gets to that point. He stated that he is concerned about her adrenal glands as her adrenal hyperplasia is not typical and because of the fact that she is having to be on estrogen at this time. He is concerned of other issues that might come up through adolescence but says that we will just watch her for now. His other concern was with her kidneys as she has the left kidney reflux and spastic bladder. He says that we won't know how it will affect her kidneys at this time and that she just needs to keep up with those appointments. He was glad that she is not having to see a nephrologist at this time for any of those issues. He said that her endocrinologist just needs to continue to monitor her adenoma on her pituitary gland as that is the only thing that can be done with these unless they start changing and then decisions have to be made. Hopefully, it will remain unchanged and we will just follow with yearly MRI's.
He stated that the doctor in England (UK) wants some more research for another article that he is going to write. Therefore, he needs lab work as well as a 24 hour urinalysis. We were given the necessary equipment and instructions to get the 24 hour urinalysis and will take care of this a couple of days prior to her next appointment in St. Louis in June. We will collect this and then show up to turn it in and then labs will be drawn and everything will be shipped at once overseas. He will not see her at that time but has agreed to see her once a year now that he is closer to us again. He is an incredible doctor and encouraged me to still keep up via email if there are any issues that might be of concern to him.
Overall, it was a very productive day and it is nice to have a physician close again that can give us information about her syndrome. I do what research I can online but again, not much of the information applies to Darein so I can only use that information to get a worse case scenario of things and a general idea of issues that others have dealt with. We mostly just continue to watch her and enjoy how well she is doing. Her geneticist was very excited to get a good vibe about how good Darein's self esteem is and to know that she is sociable and was nominated for homecoming attendant for her grade.
I called Kansas City on Tuesday and still have not received a call back about her possible stones. I will wait until Monday afternoon and then if I still have not heard any more then I will call and see where we are at on that. I will check on insoles and see about finding a place that can customize some for Darein. If we are still having issues then we will talk further to her pediatrician about what else to do. I still need to call and schedule her a hearing test as we think her hearing isn't as good as it was when she started school. Now that things are starting to calm down a little, I can have a little time hopefully to make these phone calls and set these appointments up and continue moving forward on other issues.
Hope everyone has a great weekend and very thankful that our government has decided not to shut down for now and we are all able to enjoy our National Parks for a little while longer :)
Tuesday, April 5, 2011
Summary of the Week
I've been posting on Facebook most of the week but don't have much to write about to date, so I thought I would just give a refresher of the week :)
Darein's back has been increasing in pain and her illness to her stomach is getting worse. She missed 3 days last week due to an upset stomach and ultrasound tests. She has been ill at least 1 day a week for the past 7 weeks due to either kidney or gall stones most likely. She has been getting her xrays done here in Springfield and the clinic has been mailing those xrays to Kansas City. It has been taking them a week and a half to receive them which causes it to be that much longer before we can move to the next test. The doctor in Kansas City finally agreed to let us proceed with a pelvic and abdominal ultrasound before he viewed the KUB xray. We had the radiology department make a CD for us and then we directly sent it via FedEx that same day. I called today and found out that Kansas City received the xray finally yesterday afternoon and the ultrasound today. The doctor was out this afternoon and has a full clinic tomorrow so they will try to get him to review the tests and let us know how to proceed by the end of the week, hopefully. I did stress on a phone call earlier in the week that I would like the doctor in Kansas City to perform the surgery to remove the stones if he wants to look at the anatomy of her kidneys for her left kidney reflux and at her spastic bladder. I also stated that if all he was going to do was remove the stones then we would prefer to have that done here in Springfield so that her recovery will be close to home and easier travel wise. So now we wait to see what, if anything will be done and then go from there.
As far as Darein's back goes, she has been anxiously awaiting her orthotic back brace to come in as she is hoping that it will help her pain. I finally received a phone call this morning stating that the orthotic department had to work with the orthopedic doctor appointment so that they could both see her on the same day. They happened to have an opening this Friday and so we will head to St. Louis on Friday to pick up the brace and see the orthopedic doctor.
Darein's geneticist is at Cardinal Glennon Hospital in St. Louis and is wanting to see Darein and get some labs for some further research needed to send to the UK. He has agreed to make a special appointment just to see us since Darein is in town. Darein is a little concerned about having her blood drawn at a hospital other than the usual as they know how hard it is to get blood from her. She wants to make sure that the hospital knows that she is a great finger stick, even for large amounts if possible. I assured her I would pass the message along and we would work through things once we were there and knew more about what was going to take place.
During all of my down time that I have had these past couple of weeks I finally managed to get all of Darein's paperwork taken in to see if she will qualify as disabled and receive the same benefits as a disabled person over the age of 18 or if she will receive at least a minimum of Medicaid with a $800/month deductible when we choose to use it. It will take at least a week or two to get the results. This would help if Shane's insurance caps out due to the increased medical care that she is starting to require. I also am finally filling out Children's Miracle Network paperwork to see if we can get some relief for traveling expenses and maybe help with her back brace and hearing aids that will be needed again in another couple of years. There are only certain days of the week that they are able to help you so need to get information turned in tomorrow in order to get help with her scoliosis issues.
Tomorrow I will spend the day dropping off the CMN paperwork and hopefully an interview as well as calling the doctor's office in St. Louis and asking them to fax the necessary paperwork showing that Darein has an upcoming appointment and her diagnosis, etc. Then, we head to a baseball game where Damein is expected to pitch. Thursday is errand day and so the day will be spent running errands and going to watch another baseball game. We are debating on whether to go to St. Louis Thursday night after the baseball game and staying so that we can already be up there the following morning for all of the appointments. It will be very difficult on us if we decide to wait until the morning of the appointments as we would need to leave by 5 or 5:30am, drive 4 hours to head to two doctor appointments in the morning, eat lunch and find our way over to the other hospital which we have never been to before for another appointment and then driving home 4 hours in order for Shane to be at work the next day. It makes for an extremely long day. Damein takes his ACT test Saturday for one last time to see if it helps improve his score and helps improve any chances for scholarships. In the meantime, we are still trying to find time to take Damein to get his tuxedo for prom and to pick Darein's 4-wheeler up from the repairman. I will definitely be ready for a rest next week but not planning on getting too relaxed until we hear what the plan is for Darein's kidney or gall stones. We may end up taking another trip, this time to Kansas City the very next week in order to get her to feeling better. I am very thankful that God has given me and my family the stamina that he has. Our bodies naturally seem to relax and rest when we need to and we seem to be able to find time for that down time which is very nice. This allows us to go and go for long amounts of time until we get to a place where we can finally crash again :)
Thank you to all of those that have been keeping Darein and our family in your prayers. The road is long and tedious right now but as each day passes it brings us a day closer to the light at the end of the tunnel. Darein is looking forward to going to Florida in July with her Acteen group. Because of her back brace and the care she may require I am going to go with her. We are both looking forward to some downtime and it is nice for sis to have something positive to look forward to.
Darein's back has been increasing in pain and her illness to her stomach is getting worse. She missed 3 days last week due to an upset stomach and ultrasound tests. She has been ill at least 1 day a week for the past 7 weeks due to either kidney or gall stones most likely. She has been getting her xrays done here in Springfield and the clinic has been mailing those xrays to Kansas City. It has been taking them a week and a half to receive them which causes it to be that much longer before we can move to the next test. The doctor in Kansas City finally agreed to let us proceed with a pelvic and abdominal ultrasound before he viewed the KUB xray. We had the radiology department make a CD for us and then we directly sent it via FedEx that same day. I called today and found out that Kansas City received the xray finally yesterday afternoon and the ultrasound today. The doctor was out this afternoon and has a full clinic tomorrow so they will try to get him to review the tests and let us know how to proceed by the end of the week, hopefully. I did stress on a phone call earlier in the week that I would like the doctor in Kansas City to perform the surgery to remove the stones if he wants to look at the anatomy of her kidneys for her left kidney reflux and at her spastic bladder. I also stated that if all he was going to do was remove the stones then we would prefer to have that done here in Springfield so that her recovery will be close to home and easier travel wise. So now we wait to see what, if anything will be done and then go from there.
As far as Darein's back goes, she has been anxiously awaiting her orthotic back brace to come in as she is hoping that it will help her pain. I finally received a phone call this morning stating that the orthotic department had to work with the orthopedic doctor appointment so that they could both see her on the same day. They happened to have an opening this Friday and so we will head to St. Louis on Friday to pick up the brace and see the orthopedic doctor.
Darein's geneticist is at Cardinal Glennon Hospital in St. Louis and is wanting to see Darein and get some labs for some further research needed to send to the UK. He has agreed to make a special appointment just to see us since Darein is in town. Darein is a little concerned about having her blood drawn at a hospital other than the usual as they know how hard it is to get blood from her. She wants to make sure that the hospital knows that she is a great finger stick, even for large amounts if possible. I assured her I would pass the message along and we would work through things once we were there and knew more about what was going to take place.
During all of my down time that I have had these past couple of weeks I finally managed to get all of Darein's paperwork taken in to see if she will qualify as disabled and receive the same benefits as a disabled person over the age of 18 or if she will receive at least a minimum of Medicaid with a $800/month deductible when we choose to use it. It will take at least a week or two to get the results. This would help if Shane's insurance caps out due to the increased medical care that she is starting to require. I also am finally filling out Children's Miracle Network paperwork to see if we can get some relief for traveling expenses and maybe help with her back brace and hearing aids that will be needed again in another couple of years. There are only certain days of the week that they are able to help you so need to get information turned in tomorrow in order to get help with her scoliosis issues.
Tomorrow I will spend the day dropping off the CMN paperwork and hopefully an interview as well as calling the doctor's office in St. Louis and asking them to fax the necessary paperwork showing that Darein has an upcoming appointment and her diagnosis, etc. Then, we head to a baseball game where Damein is expected to pitch. Thursday is errand day and so the day will be spent running errands and going to watch another baseball game. We are debating on whether to go to St. Louis Thursday night after the baseball game and staying so that we can already be up there the following morning for all of the appointments. It will be very difficult on us if we decide to wait until the morning of the appointments as we would need to leave by 5 or 5:30am, drive 4 hours to head to two doctor appointments in the morning, eat lunch and find our way over to the other hospital which we have never been to before for another appointment and then driving home 4 hours in order for Shane to be at work the next day. It makes for an extremely long day. Damein takes his ACT test Saturday for one last time to see if it helps improve his score and helps improve any chances for scholarships. In the meantime, we are still trying to find time to take Damein to get his tuxedo for prom and to pick Darein's 4-wheeler up from the repairman. I will definitely be ready for a rest next week but not planning on getting too relaxed until we hear what the plan is for Darein's kidney or gall stones. We may end up taking another trip, this time to Kansas City the very next week in order to get her to feeling better. I am very thankful that God has given me and my family the stamina that he has. Our bodies naturally seem to relax and rest when we need to and we seem to be able to find time for that down time which is very nice. This allows us to go and go for long amounts of time until we get to a place where we can finally crash again :)
Thank you to all of those that have been keeping Darein and our family in your prayers. The road is long and tedious right now but as each day passes it brings us a day closer to the light at the end of the tunnel. Darein is looking forward to going to Florida in July with her Acteen group. Because of her back brace and the care she may require I am going to go with her. We are both looking forward to some downtime and it is nice for sis to have something positive to look forward to.
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