I don't even know where exactly to begin. Yesterday seemed to be so stressful. We found out that Sean and Kadian both may have to have surgery. Sean was sitting in the chair Saturday and went to stand up and his ankle gave out. He thought it just needed to be popped. He was limping around till Monday when he went to the DRs. They told him that he has bone fragments and bone spurs. I guess the radiologist has to read the xray and they will determine from there what he needs to do. This is the foot he broke when we lived here before. The doctor then said he may need surgery but opted not to because he was on sea duty. They should have just fixed it then. This whole time he has issued with it but was told it would get better.
I took Kadian back to the Urologist yesterday. The good news is they have the equipment for the Biofeedback so as soon as they get it up and running she will be the first one to use it. The bad news is she is very constipated(to the point of being impacted) even after being on Miralax twice a day along with Ducolax. She will be on a crazy medicine schedule for the next couple of days that may make her very miserable..that's even if she tolerates the first medicine and I can find the right dosage(as of yesterday none of the pharmacy's around here have it.) She is on antibiotics till she see's the actual Urologist(she see's a NP who specializes in helping kids with incontinence). The Urologist will determine if she needs to have the more complicated surgery to fix her Ureters. She is definitely still having urine reflux so the deflux surgery has definitely failed. The NP said her main concern right now is to prevent the 105 fevers. They can cause damage to her kidneys. She also agreed that Lauren's geneticist should do LCHAD sick labs on Kadian during the UTIs. She said it is not common for UTIs to cause leg pains. She has only experienced normal UTI symptoms a couple times. She is kind of baffled by that. She said a high fever could cause muscle pain but there have been times when Kadian has had a UTI without the high fever. During the low grade fevers, she has complained that she can't walk. Hopefully he will be willing to look into it. We won't find out till August 10th if she will need the surgery.
Tuesday, July 20, 2010
Thursday, July 1, 2010
Update on DR appts.
I figured it would be easier just to update everyone on everything going on on here.
Lauren:
Lauren's cardiologist appt went well. She goes once a year to make sure she isn't developing a fatty heart and/or cardiomyopathy. The DR said her heart looked beautiful. It is within normal thickness and function. He was very happy that she is doing so well right now. Hopefully it will continue. She has been having leg pains alot lately but she is still fighting a cold. It seems to be lingering still. It's not horrible but just enough for it to make her legs ache and her cough at night. Her next appt will be with Opthamology. She can get something called Retina Pigmentosa. It is where the pigment in the retina breaks down do to the lack of fat in her diet. So we go yearly to insure that isn't happening. She hasn't had any symptoms of it yet.
Kadian:
Kadian has another UTI. I spoke to her Urologist the week before last. They are going to do her Biofeedback there. We are having such a hard time with Tricare finding a preferred provider to do it. They are waiting on the equipment to come in. She will be the VERY first person to have it there. When the company comes to teach them how to use the equipment they are going to use her to demonstrate how to use it. We are REALLY hoping this will help. They are also going to do another procedure on her. I can't remember what she called it. But it is b/c the Urologist thinks the Deflux(surgery where they put a jelly-like substance in her Ureter tubes, which are the tubes that drain the urine from the kidneys to the bladder, to prevent urine from going back into the kidneys and causing infections. Each time she has these horrible UTIs they can cause the infection to go into the kidneys and destroy her kidneys. )failed in Kadian's case. She said there is a 20% chance of failure with it. I don't know what will happen next if it has failed. We are hoping that once we can get her daytime incontinence under control that it will help with the UTIs. She goes back to the Urologist in July.
Sean:
We still have no idea what is wrong with Sean. The specialist at the Mayo Clinic said she wasn't sure if it was MS or not. The Navy neurologist ordered all the tests she requested and he did all but the MRI at the appt. Some of the stuff she ordered didn't seem to fit with what is going on with him but I guess she wanted to make sure every thing was covered. The neurologist said he wasn't sure if all of this was caused by a virus. He said it is possible that it could be. They are going to do a MRI in July and see if there are more lesions or if they are worse. He said if they haven't changed and he hasn't had another episode of MS then they will return him back to full duty. At that point he would definitely feel it was viral. We are hoping that it is. If so, then he can re-enlist and do his last three years in the Navy. If it is MS, then they will most likely medically retire him at the end of this contract and we can keep Tricare. There is a possibility that they would not medically retire him nor let him re-enlist which would be a horrible thing for us. Yes he will be able to get a job afterwards but we won't get Tricare. We will go broke from the cost of medical care for all of us. Lauren's problems alone would cost ALOT. It is sooooo stressful not knowing what is going to happen. All the plans we made leading up to him retiring at 20 and after are so up in the air at this point. I hate the uncertainty.
BUT I know that God has a plan for us. I know I need to stay focused on what God's plan is for us. We lost alot of money when all this happened but we also have been able to stay together. Had this not happened ,Sean would most likely be living in SC(on shore duty) while I lived here till our house sold. We have already lived apart once(beyond the normal sea duty patrol). We don't want to do it again. I am hoping that we can stay here till he retires. We are waiting to hear back from the detailor about what his options would be if he is returned to full service. Please pray for us as we go through all of this.
Lauren:
Lauren's cardiologist appt went well. She goes once a year to make sure she isn't developing a fatty heart and/or cardiomyopathy. The DR said her heart looked beautiful. It is within normal thickness and function. He was very happy that she is doing so well right now. Hopefully it will continue. She has been having leg pains alot lately but she is still fighting a cold. It seems to be lingering still. It's not horrible but just enough for it to make her legs ache and her cough at night. Her next appt will be with Opthamology. She can get something called Retina Pigmentosa. It is where the pigment in the retina breaks down do to the lack of fat in her diet. So we go yearly to insure that isn't happening. She hasn't had any symptoms of it yet.
Kadian:
Kadian has another UTI. I spoke to her Urologist the week before last. They are going to do her Biofeedback there. We are having such a hard time with Tricare finding a preferred provider to do it. They are waiting on the equipment to come in. She will be the VERY first person to have it there. When the company comes to teach them how to use the equipment they are going to use her to demonstrate how to use it. We are REALLY hoping this will help. They are also going to do another procedure on her. I can't remember what she called it. But it is b/c the Urologist thinks the Deflux(surgery where they put a jelly-like substance in her Ureter tubes, which are the tubes that drain the urine from the kidneys to the bladder, to prevent urine from going back into the kidneys and causing infections. Each time she has these horrible UTIs they can cause the infection to go into the kidneys and destroy her kidneys. )failed in Kadian's case. She said there is a 20% chance of failure with it. I don't know what will happen next if it has failed. We are hoping that once we can get her daytime incontinence under control that it will help with the UTIs. She goes back to the Urologist in July.
Sean:
We still have no idea what is wrong with Sean. The specialist at the Mayo Clinic said she wasn't sure if it was MS or not. The Navy neurologist ordered all the tests she requested and he did all but the MRI at the appt. Some of the stuff she ordered didn't seem to fit with what is going on with him but I guess she wanted to make sure every thing was covered. The neurologist said he wasn't sure if all of this was caused by a virus. He said it is possible that it could be. They are going to do a MRI in July and see if there are more lesions or if they are worse. He said if they haven't changed and he hasn't had another episode of MS then they will return him back to full duty. At that point he would definitely feel it was viral. We are hoping that it is. If so, then he can re-enlist and do his last three years in the Navy. If it is MS, then they will most likely medically retire him at the end of this contract and we can keep Tricare. There is a possibility that they would not medically retire him nor let him re-enlist which would be a horrible thing for us. Yes he will be able to get a job afterwards but we won't get Tricare. We will go broke from the cost of medical care for all of us. Lauren's problems alone would cost ALOT. It is sooooo stressful not knowing what is going to happen. All the plans we made leading up to him retiring at 20 and after are so up in the air at this point. I hate the uncertainty.
BUT I know that God has a plan for us. I know I need to stay focused on what God's plan is for us. We lost alot of money when all this happened but we also have been able to stay together. Had this not happened ,Sean would most likely be living in SC(on shore duty) while I lived here till our house sold. We have already lived apart once(beyond the normal sea duty patrol). We don't want to do it again. I am hoping that we can stay here till he retires. We are waiting to hear back from the detailor about what his options would be if he is returned to full service. Please pray for us as we go through all of this.
Monday, June 7, 2010
Its been a while....
So it's been awhile since I have updated this. The girls are doing pretty good. The twins graduated from Pre-K. They are so excited to go to kindergarten in the fall.
Kadian will be going to 2nd grade. The school year seemed to fly by. Kadian got the A honor roll for the year. She was also accepted into the Gift program. She will start this coming year. Medically she is about the same. We have found that none of the medications are helping with her bladder issues. She has adverse reactions to the medications. The doctor wants her to try Urinary Biofeedback. Hopefully it will help because we are pretty much out of other options.
Lauren is doing OK medically. She hasn't been sick or hospitalized in a while. She is still having muscle weakness but she will always have that. She still doesn't want to wear the braces on her legs. The geneticist said if she continues to toe walk her thigh muscle will start to get weaker. This could mean she would need a wheelchair eventually. Hopefully she will realize how important it is and that they will help. It is a real struggle to get her to wear them. She cries the whole time they are on. We have tried different things to get her to wear them. She is still drinking Portagen out of a sippy cup. I am hoping I can break her of the sippy cup during the day. She will drink everything else in a normal cup. Not sure if it is a comfort thing. She says it tastes gross in a cup. Maybe its not mixing well enough.
Onto to Sean...Sean has been informally Dx with MS. He has spinal lesions but no brain lesions. His spinal tap indicated MS but the his symptoms aren't the "typical" MS symptoms. Plus with the size of his lesions his MS should be worse. He went to the Mayo Clinic a couple weeks ago. The doctor there is unsure if it is MS or an autoimmune disorder. His ANA blood test was elevated and WBC was low. She wants more blood tests done, a better brain MRI, and a chest xray. He goes back to the Neurologist at the end of the month. Hopefully we will know more then. He is in ALOT of pain ALL the time. It is heartbreaking to not be able to do anything to make him feel better. We are hoping they will start treating him soon. He is constantly tired.
It all seems so overwhelming at times. I think if I didn't live my life ,I would wonder if all this could possibly happen within one family. We often question if all this could be linked to one Dx. It is hard to research to see if there is a link b/c so many disorders and illnesses all have similar symptoms. Lauren's disorder is so rare that most doctors do not know enough about it to really say if they are all linked together. I hate waiting and seeing how things go. Not knowing what's going to happen gives even more anxiety. I like to be able to plan out what we are going to do. We still don't know what the Navy is going to do with Sean. We are hoping they let him stay in till at least 18 years so he can retire with his full benefits but we aren't sure if that will happen.
Kadian will be going to 2nd grade. The school year seemed to fly by. Kadian got the A honor roll for the year. She was also accepted into the Gift program. She will start this coming year. Medically she is about the same. We have found that none of the medications are helping with her bladder issues. She has adverse reactions to the medications. The doctor wants her to try Urinary Biofeedback. Hopefully it will help because we are pretty much out of other options.
Lauren is doing OK medically. She hasn't been sick or hospitalized in a while. She is still having muscle weakness but she will always have that. She still doesn't want to wear the braces on her legs. The geneticist said if she continues to toe walk her thigh muscle will start to get weaker. This could mean she would need a wheelchair eventually. Hopefully she will realize how important it is and that they will help. It is a real struggle to get her to wear them. She cries the whole time they are on. We have tried different things to get her to wear them. She is still drinking Portagen out of a sippy cup. I am hoping I can break her of the sippy cup during the day. She will drink everything else in a normal cup. Not sure if it is a comfort thing. She says it tastes gross in a cup. Maybe its not mixing well enough.
Onto to Sean...Sean has been informally Dx with MS. He has spinal lesions but no brain lesions. His spinal tap indicated MS but the his symptoms aren't the "typical" MS symptoms. Plus with the size of his lesions his MS should be worse. He went to the Mayo Clinic a couple weeks ago. The doctor there is unsure if it is MS or an autoimmune disorder. His ANA blood test was elevated and WBC was low. She wants more blood tests done, a better brain MRI, and a chest xray. He goes back to the Neurologist at the end of the month. Hopefully we will know more then. He is in ALOT of pain ALL the time. It is heartbreaking to not be able to do anything to make him feel better. We are hoping they will start treating him soon. He is constantly tired.
It all seems so overwhelming at times. I think if I didn't live my life ,I would wonder if all this could possibly happen within one family. We often question if all this could be linked to one Dx. It is hard to research to see if there is a link b/c so many disorders and illnesses all have similar symptoms. Lauren's disorder is so rare that most doctors do not know enough about it to really say if they are all linked together. I hate waiting and seeing how things go. Not knowing what's going to happen gives even more anxiety. I like to be able to plan out what we are going to do. We still don't know what the Navy is going to do with Sean. We are hoping they let him stay in till at least 18 years so he can retire with his full benefits but we aren't sure if that will happen.
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