My thoughts on the Justina Pelletier Case

If  you are part of the Mitochondrial disease community you have heard of this case, if you are not there are many articles on the Internet about it. Here is a recent article about the case: http://www.bostonglobe.com/metro/2013/12/15/justina/vnwzbbNdiodSD7WDTh6xZI/story.html.

     First I will say I personally do not know this family. My opinions are based sole of what I have read. My intent isn't to argue the details of the case but to kind of give a different perspective. Much of the controversy is based around Boston Children's Hospital, and the choice that they made to get DCF involved in what they believed to be a misdiagnosis of Mitochondrial Disease. I have read many comments on the official Facebook page for BCH. At first I was angered at the comments defending this hospital. How could people not see that this hospital was destroying a family(and other families going through the same thing)? How could they be okay with that? But I thought about the fact that while this family is going through this, another family is getting a second chance with their baby or child after a life saving surgery. My point is this: not everyone's experience is the same as yours so try to take that into consideration.
    My oldest daughter has had medical issues since she was around 4 years old. At 6 years old she had a MRI of her spine. She saw a neurosurgeon(that I am sure has saved many children's lives or at least made it possible for them to live a more normal life) in Jacksonville. Twice he told my family there was nothing he could...that my daughter's medical problems were not caused by what we were seeing him for. We trusted his opinion at first. We tried to seek out a second opinion but with our insurance that limited what we could do. The rest of the physicians in his practice(who were the only other neurosurgeons in our area that our insurance covered) refused to even look at my child's case. When my daughters case was brought up by a doctor he couldn't recall who she was and told them she had a completely different diagnosis than what she actually had.
    Fast forward to us moving to Iowa. The GI doctor and Urologist wanted to make sure the neurosurgeon here looked at Kadian's case because they believed that her issues were the result of the problem with her spine. So they referred us to one of the top neurosurgeons in the country. Lucky for us he was at the same hospital as her other specialists. 
     I left that appointment in tears because he pointed out so many things that were missed by the doctor in Jacksonville(and some of the others that saw her also). He wanted to review her past MRI's and for her to see some other specialists before he made a decision on what he felt needed to be done. After looking at her MRI he said it is clear that she has Tethered Spinal Cord syndrome. The sooner that your child has a spinal cord release the better their prognosis is with TCS. She will must likely always have neurological damage because the original doctor did not do the surgery(although our neurosurgeon now will not confirm this but if you read Pubmed and many medical sites this is an accurate statement)when the issue was first found. 
  After her surgery each doctor that took care of my daughter asked the same question..."why didn't she have this surgery sooner?' I was angry. Angry that I trusted so many of the doctors that were in that area. Angry that our insurance company was not helpful in finding out what was wrong with her or helping to find someone to help her. Angry that she may have went through unnecessary tests...angry that she may have had a chance at a normal lifestyle.
   Others may have had a positive experience with the doctor in Jacksonville but we did not. It's not to say that their experience isn't accurate or that he did not save their child but he failed mine. So while BCH saved your child's life or helped him/her have a second chance, it does not negate the fact that they have forever changed the lives of this family and several other families that have a mitochondrial disease diagnosis.
   My hope is that Justina will be returned to her family. So many families of kids with Mitochondrial disease are falsely accused of MHBP because so little is actually known about Mitochondrial Disease. My hope is the judge will do research about this disease and realize that it is not always a cut and dry thing. Her symptoms and the way she presents is very much like my daughter's(we are still unsure if she has Mitochondrial disease or not) so I know without a doubt any of us in this community could be in the same boat as her parents.
      

De ja move

A lot has happened since the last time I wrote a blog post. Last April Sean was medically retired from the Navy. Our life rapidly changed..which seems to be a pattern for us. When things seem to going along smoothly somewhat smoothly, our life usually takes a different turn.

Sean began the search for a new job which landed us in Paducah,Ky. We bought a house and began to settle (somewhat) into a routine there. About a month into us living there, the plant he worked at started talking about laying people off. So after just 5 months of living there he was in search of a new job. It felt like we had just did the whole moving thing, finding a house to live in , and establishing our life in a new place. We ended up choosing Iowa. Not in a million years had I ever thought I would end up in KY...so Iowa was way off the radar. Sometimes we have to expand our horizons...or so I have been told.

Life is very different here. For starters, the ice and snow is completely different from any weather in southeast GA. Although it's very tiring for Sean, he really enjoys his job.  The girls are settling into a new school with new friends. We have begun to set up their medical care here. The biggest downside is how far away the speciality doctors are from where we live. Wish that it was closer but it is what it is.  We found out that the third part of Kadian's muscle biopsy was not sent off . Hopefully this coming week it will be. They are looking to see if she has a mitochondrial complex involved or carries another gene for a different fatty acid disorder other than LCHAD. The question is if possibly the two genes are causing all her issues. We also found out that Lauren has outgrown her port so that will have to be replaced. She saw an opthamologist here the other day. Her Retina Pigmentosa has progressed because she is having trouble seeing in dim light. In March, they are doing a test to see how well the retinas function. Life is stressful as always but each and every day I spend with my girls is a blessing. 

Update on everyone

We are kind of at a stand still with everyone. We are waiting on our insurance to figure out all the stuff with Kadian. It is so frustrating because we need to figure out what is wrong with Kadian. When we went to the Urologist last week the NP said she feels what is wrong is progressive and not functional. She said it is not common how quickly she has gotten worse. It was hard to hear that even though mentally I already knew that. We are going to get a second opinion from a Neurosurgeon in Savannah to see what he says about her spinal tumor. The one at John Hopkin's said he would de-sect it but of course he isn't covered by our insurance. If her muscle biopsy for Mitochondrial disease is normal, then we will move forward with having someone de-sect the tumor to see if it helps. We may have to do fundraisers to raise money to have the surgery done but I want to make sure the person cutting into her spine is someone I trust.
Lauren is doing pretty good. She saw the orthopedic surgeon a couple weeks ago. She believed that doing the heel cord release would help her. She believes she will be successful with the surgery. Lauren wants to have it done. The doctor said that will help a lot. She can't wait to wear boots. We are unsure when they are doing the surgery. She has to have an anesthesia appt first. She goes next week for her genetics appt.
Sean is doing okay. We are still waiting on the Navy for them to decide what they are going to do. Hopefully we will find out soon so we know what to do about our house and his job. I have a feeling they will come back at the very last minute to tell us what's going to happen. It is so scary not being able to have a concrete plan. Sean's MS has been about the same. He constantly has symptoms of it but I guess that is part of it. He has had necrosis from the injections he has to give himself. It has basically killed his skin in that area. It seems to be the side effects for all the inject-able medicines.

To pysch or not to pysch

I haven't updated recently just because it feels like so many things are going through my mind lately. I am afraid my thoughts will not make sense and at times may seem harsh.
A doctor and some people in my life has said that I need to seek counseling because of everything in my life...that I need someone to talk to about all this. I am unsure if I should...I guess it's more of a question as to will it help....will it change anything...will it make anything better. I don't know if it would. I don't feel like there are many people who quite understand what I have been through or am going through. I think the person will just say what every other person has said.."oh wow!! How do you do this...your so strong...that's so sad". Maybe I'm in denial and they may actually help. I don't feel depressed or anything...just overwhelmed and frustrated with the whole situation with Kadian.

memories....

Ever have moments that play out in your mind over and over again? It's like that moment is forever etched in your mind...it is like a tape that plays over and over again. For many of us with kids with a FAOD we can all go back to that phone call or doctor's visit.

I had went home to take a shower, do some laundry and try to spend some time with Kadian while Sean stayed with the twins at the hospital. We didn't want to leave them there alone so we would take turns taking care of them. We were exhausted, scared, overwhelmed...so many things at that point. The details of that day and the days to follow will be forever etched in my mind though. I can't remember much of what I did last week but I don't think I will ever forget that day 6 years ago.

The phone rang... I remember the confusion I felt as the woman on the other side of the phone TRIED explained to me that something was "abnormal" on Lauren's newborn screening. I can still hear the woman's voice explaining she did not know what any of it meant but that I need to contact her doctor right away. I remember trying to explain to the nurse at the hospital what the woman had told me.

I remember looking at my precious little pink ball of joy and thinking dear God I hope this is all just a dream. I can still see the Neonatologist face as he explain in medical terms what was "wrong" with my baby. I remember having no clue what it all meant and what it all would mean later on. I remember praying that they were wrong...that we would wake up from all of this and they would be wrong.

It amazes me how much of our life changed in those few days. Many would have thought just having twins would have been life changing. It paled in comparison to hearing those words. I think back and realize now that God was preparing us for what was to come. Each and every moment had a purpose...has a purpose.

Trying not put all my eggs in one basket

Hope is some extraordinary spiritual grace that God gives us to control our fears, not to oust them. ~Vincent McNabb

Recently I was reminded of how much hope impacts my life. Yesterday, as I read an email from a doctor I realized how hopeless I really was. As I walked out of one of Kadian's appointments two weeks ago I think I resigned myself that things would always be the way they were. I would have to just ACCEPT that she was always going to have the problems she does. That it would never get better and there was nothing I nor any doctor could do to help her. That she would always remain a medical mystery. That hopefully, one day she would just out grow all this. Logically I know she most likely won't "outgrow" it because as time goes by she is getting worse. I lost hope... I resigned myself that she would never live without the embarrassment of wetting her pants. Imagine being in 3rd grade...remember the need to fit in...the need to be just like everyone else...the need for your friends to accept you. My heart hurts for her because I know how much it will hurt her if someone does make fun of her. I am hopefully though...I am hoping and praying this doctor will look closely at all that is going on with her. That he will be able to help....I know what is going on with her is complicated and may include more than just one diagnosis...but maybe just maybe we have some hope again....

What a glorious day!!!

Last night as I put the twins to bed, I thought for once things seemed to be normal. I laid them down, read them Green Eggs and Ham, and tucked them into bed. I was sadly reminded that our life isn't normal. As I walked by the bathroom, Sean was hooking Kadian up to go potty. I am often amazed by how much medical science is helping our family function normally. Her belly is starting to not look as bloated as it was. I guess we got used to how it looked. Sean commented last night how he could see how much it has gone down. It is still very hard in spots but for once in a very long time it almost looks normal. The best part is she is on less medicine. I HATED pumping so much medicine into her little body. We are praying this will help with her bladder dysfunction. Hopefully this month the doctor will be able to do her DNA testing for all 54 genes for FAODs.
After we got the girls in bed, I helped Sean put three heating pads all over him. The medicine he is on makes his whole body hurt even worse than what it does just from MS. It breaks my heart watching him struggle with the pain. The shots have many side effects. You have to wonder if it is worth it. The doctors say that the side effects get better over time. I sure hope so. He has started the process with the VA so he has several appointments. They look at all the problems he has had over his military career. They examine him to see if they are still there. Then they rate his disability according to it. He did another sleep study last week. This showed several problems so he goes back this week to sleep on a CPAP machine. Soon he will start the process with the Navy to determine if they will allow him to finish out his 20 years or if they will medically retire him. Please keep us in your prayers. We are still hoping they will say he can stay in the Navy for the last 2 years.

The silver lining:)

"Friendship is unnecessary, like philosophy, like art... It has no survival value; rather is one of those things that give value to survival." - C. S. Lewis

Friendships seem so hard for special needs parents. A lot of people I know complain that people seem to disappear once they have a child with special needs. We have had that to a certain degree but I have had a lot of great people support us through all of this. It makes my heart happy knowing that people care. Sometimes it feels like this situation has consumed us. I worry that all people see us as are "the sick family". They don't see the normal everyday stuff we go through. My hope is that each person will see that we are more than just our illnesses...that people will see our value.
We have been so blessed in so many ways and I hope people see that too. I have had several people say, "I don't know how you do this." or "How do you keep it all together?". I think we do what every other special needs family does. We keep on going for each other. Life is hard for everyone. Our struggles may be different from others but everyone has struggles. I amazed by the strength of so many others. It is truly inspiring. I have learned from so many others: that you have the illness, it doesn't have you.
We never expect life to be what it is sometimes. I never thought I would watch my husband try to teach my daughter to be brave for her port flush by him trying with all his might not to pass out from injecting medicine into himself. I never thought I would have to rush home to help hold my daughter down so she could have her port flush...I didn't even know what a port was till she came along. I never thought my 8 year old would even know the words spinal lesion...never-mind tell someone she was having a MRI to look for them. But we have learned so much from all of this. My kids are compassionate little people because they have been through so much. Their strength and compassion inspires me!!

Never a dull moment!!!

I thought it was time for an update. A lot has happened lately and I have been just trying to process it all.
Sean~He had a MRI of his lower spine and brain. They didn't find any lesions on his lower spine nor his brain. This is good news!! The doctor thought that the lesions in his neck long lesions that extended down his spine(this would have been another indication of Devics disease vs. MS). This is not the case. He went back to see Dr.Cantor(the civilian neurologist) last week. He finally dx'd Sean with Relapsing and Remitting MS. Well technically he has MS with an asterisk. Who gets a diagnose with an asterisk...my family does!!! Meaning they believe it is MS, but the fact that he only has spinal lesions and we have a crazy family history they won't commit to saying that is definitely MS. They will always question his diagnosis b/c of our girls and his weird symptoms. They drew a bunch of blood and started him on some medicines to treat MS. The doctor is hoping that we can get him back to only having very minimal numbness. He is hoping that between the steroids and interferons the numbness will get under control. The interferon medicine will hopefully prevent another episode. We still don't know what will happen with the Navy. He most likely will have to start his med board process in July. This part is the most nerve racking b/c our future is in the Navy's hands. That is such a scary thing for me but I know all things will work out. Please pray for us as this is such a stressful process.

Kadian~Kadian had her MRI about 2 weeks ago now. The sedation went great. The anesthesia doctor said she believes she had trouble with a medicine called Precedex. They put in her records she is never to have this again. Her spine MRI was normal. The good news~ she has no spinal lesions and the tumor on her spine isn't bigger.

We went back to the neurosurgeon and he said once again there was nothing he could do. He said he believes something is wrong and not to give up looking to find what it is. He said there is nothing surgically they could do. He said her muscle on her legs looks good. He doesn't see any "wasting" away so this is good news.

The neurologist wants her to have a brain MRI to see if it is something in her brain causing all her symptoms. Hopefully they will call by Tuesday to set up the appt. She goes on the 18th to see the surgeons for her Cecostomy tube. She has had a bladder infection since January. I feel so bad for her because I know it is painful and embarrassing. She actually got a bacteria that is killed by Septra while on Septra. Not a good sign at all!!!

Our pediatricians office called last week when we were in FL to figure out what they needed to do to send her to the mitochondrial specialist in Atlanta. I am praying we can get that all figured out this week. There has to be something that explains all of this. She isn't getting any better despite every thing we are doing.

MRIs and such...

I am hoping this week we may have some answers about Kadian. Tomorrow she goes for her anesthesia consult for her MRI. Wednesday they will put her asleep to do the MRI. They're checking to see if she also has spinal lesions and to see if the tumor on her spine has gotten any bigger. Friday we found out she still has an UTI. This means she has had an UTI for 6 weeks now. The sad part is she is getting UTI's while already having another. How do we know its not the same infection b/c it has been different bacteria. The 2nd one was supposed to be killed by the same medicine she was already on.:( Her pediatrician recognized the fact that the Urologist needed to get involved to figure this out. Hopefully tomorrow they can figure out what to do. Hopefully they will also talk to the GI people to get her referral to the surgeons for her cecostomy tube. I am hoping they get this stuff straightened out tomorrow. I still haven't heard back about her having the muscle biopsy. I am planning on calling them this week and Tricare to figure out what needs to be done so we can figure out if she has some type of Mitochondrial disease.
Sean is still in his flair up. They gave him some medicine that is supposed to cause his body to make steroids. Not sure it worked though. He is still in a lot of pain, numb, and tired. I teasingly put my cold soda against his leg and he didn't feel it:( This breaks my heart because he hasn't had numbness in his legs till this time. They did another MRI on him last week so when he goes back to Dr.Cantor we will know if he has lesions down the rest of his spine. We know for sure he doesn't have AMN so it's down to Devics Disease and MS.
Please continue to pray for our family. This has been a hard time for us. I just keep praying for God's guidance and strength.

Trying to hold it together....

Where to begin....I feel like I am in such a negative place right now. I am trying to stay positive and to stay focused on the here and now but it is quite difficult right now. I am overwhelmed by so much and the sad part is none of it can be changed. It is what is but that doesn't make it any easier. I am trying not to be mad at God and trying to understand why things are the way they are. I am trying to ignore the information out there and trust that things are going to be okay. But it is very HARD!! I feel like I am trying but falling apart on the inside.

When Lauren was diagnosed I knew Sean and I could handle it. We grew stronger together for her and because of her. Our focus was on making her(and the other girls) happy and healthy. We never had to say it to each other but we knew both of us would do whatever it took to keep her with us. Then the stuff with Kadian started happening and now Sean. I keep telling God I cannot do this alone. I feel bad praying that what is wrong with him is just MS. MS is horrible in itself but relapsing Devic disease scares the crap out of me. The worst part is I know it is scaring him too. What makes it even more complicated is he doesn't fit in the textbook of symptoms for either of the diseases. It's heartbreaking to watch him struggle just to find words b/c he cannot concentrate. It's heartbreaking knowing he is in so much pain, is overly tired, has numbness on a large part of his body, and now is on edge all the time. I feel powerless to all that is going on. I HATE this!!!!

"Sometimes we plan, and God laughs" - Annie Camden

We had plans..we had big plans...seems like those plans are slipping away. But I know I have to put my faith in God. I know his plans are bigger and better than any plan we have. The uncertainty of all of this is eating away at me. I feel like if something else goes wrong I may have to be admitted. I feel like life is at a stand still but at the same time just keeps marching on. What was supposed to happen isn't...I am trying not to get angry...to not get discouraged but to trust in God. This verse keeps popping up in different places around me..."For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."Jer 29:11 (NIV)...I think God maybe trying to send me a message...

one of THOSE days...

Today has definitely been one of those days. What we thought we knew and what actually is seems to be two separate things. The doctor went back and looked at Kadian's genetic sequencing. She only has one of the 2 genes that Lauren has. The doctor said to wait a couple months and they will be able to look at all 54 FAO genes to see if she has a 2nd gene that is VLCAD or MCAD which is causing the Trifunctional Protein deficient. So we have to wait longer to see if she actually has a fatty acid disorder or she is just a carrier that proves, with blood work, that it is possible to be a carrier with symptoms. This is so frustrating.

We also found out today that Sean has a new lesion on his spine. This means that he has had 2 separate episodes of lesions. The doctor said he is pretty certain that he has MS but he has atypical symptoms. The girls disorder makes him question maybe that it maybe a disorder called Adrenomyeloneuropathy. This disorder has do with an elevation in very chain fatty acids. The doctor order a blood test to see if his are elevated. This disorder can cause spinal cord lesions. The doctor is also sending him to Bethesda,Maryland for further testing. I just wish for once things were normal. Definitely been a hard day!!!

Genetics is so confusing!!

I talked to the doctor that did our genetic mutation stuff. He said they are going to look at Kadian's genetic mutation stuff again. He said her symptoms of bladder/bowel dysfunction isn't due to LCHAD but the fact that her long chain fatty acids are elevated makes them want to look at things again. He said there is a slim chance that she may have a gene from another chain(short,medium, or very long) that is causing her long chains to not function properly. He said they will look at things and if they can't figure it out then we should do a muscle or skin biopsy. He said this way they could also have grow the skin cells and have them to test as they find future disorders. I am praying this will give us some clarification on all of this.

Update on everyone

It has been a while since I have blogged last. So much has happened. Between the girls and Sean being laid up things have been hectic.

Kadian~
Kadian has been Dx with LCHAD. Before her second deflux surgery her acyl-carnitine profile showed her long chain fatty acids are elevated. She is on several medicines now to try and help. We have stopped biofeedback because it isn't helping with her being so constipated. We saw a new GI doctor today. He basically said that if she doesn't get a gtube she has to get a cecostomy tube. It is a tube that is placed in the colon to help with constipation. We are waiting to hear back from the genetics doctor to find out if we are still going to try the NG tube to see if that helps her. I guess this is a trial run to see if it will even help with her issues before they decide whether or not she will get a gtube. I am hoping he will call back tomorrow so we can decide what to do next. She saw the neurologist last week. They are going to do a full spine MRI on Saturday morning. They are checking to see if she also has spinal lesions also. The first MRI she had was just her lower spine. She is going to back to the neurosurgeon on the 16th. Hopefully the MRI will indicate if the tumor on her spine is larger and/or to see if they believe that it has anything to do with what is going on with her bladder/bowel. She hasn't gotten better since the last time we saw them. I am not sure what will come of seeing them. I am hoping we have some answers soon. She has another UTI but constantly has them. Her cardiology and ophthalmology went very well. She has no thicken of the heart and very little signs of Retina Pigmentosa of the eyes.

It blows me away how blessed we are that she has survived this long without us knowing she has LCHAD. Most babies die within the first year when it is unknown. This Sunday she will be 8 years old.

Lauren and Emily~Lauren and Emily both have strep throat and are on antibiotics. Lauren is very hoarse again. She is doing okay with being sick. Hopefully the antibiotics will start to get rid of it and she can talk normal again. Emily just has an upset belly from it but I think it might be the antibiotics.

Sean~Sean had his ankle surgery earlier this month. He still has about 3 more weeks of not being able to put any weight on his ankle. The doctor didn't seem to positive about the surgery working. We will know in 3-4 months if the surgery worked. If it doesn't then he will have to have his ankle fused to his leg. This means he will not be able to bend his foot. Friday he goes back to the neurologist. We will see then if he has any new lesions. His hand and arm are completely numb again. It hasn't spread to his other arm yet. He goes back to work tomorrow so we will see if his severe fatigue happens again.

UGH!!

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.

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.

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.

Change is a coming...

So as we look forward to the next four years of a new President, the first African American to lead our country, things are changing within our family.

Lauren's body seems to be changing. It seems she is suffering from low blood sugar more often than before. She tires out alot easier now. It worries me because she never really had problems with her blood sugar. She is still having the muscle breakdown daily. It seems there is no end in sight as far physical therapy. The geneticist confirmed this at her last appointment. He said usually the kids decide they are done with PT before they actually ever "graduate" from it. He said she will always have the issues with walking,tripping, and a lack of balance. She is having a hard time getting over her last hospitalizations. I think we are at somewhere around 16 hospitalizations. I am starting to lose count. The geneticist also said she will pretty much always require being fed throughout the night. I was hoping that eventually that would be phased out but he said she will either always have a gtube or will have to wake up a couple times during the night to eat. I was disappointed cause I was hoping that as she got older she would eventually be able to go overnight without the gtube. It seems impossible for Sean and I to ever have a night without kids. Which brings to mind the fact that she will never really be able to have sleepovers at other friend's houses. Seems so minor for most but yet another thing she may not ever be able to do. She has decided that she doesn't want to drink her Portagen from a regular cup...milk and juice she will drink from a cup but she refuses to drink her Portagen from a cup so she still gets a sippy cup for that. I was hoping we could do away with all things baby but that seems to be a slow process. They are doing really good with potty training. They both will go all day with panties on.

I think Kadian has another UTI. She has been sick over the weekend. The last UTI she had was the size an adult woman and she acted the same way she has been acting since Saturday. Both times her fever came on suddenly. She never threw up either times or had pain in the typical spots but had a stomach ache both times with diarrhea. She also didn't know she had to go pee till it was running down her leg. So they did the test yesterday afternoon. Once the DRs office is open this morning I will be calling to check on her test results. If she doesn't have an infection I will be very surprised. If she does it means more testing that the Urologist will do. She said she may have some urine reflux which her last VCUG didn't indicate. So either they will repeat this test or surgrically go in there to look at. She is on 2 doses of Ditropan a day now. She is still having 2-4 accidents a day. I am hoping they actually do something that will truely help her completely. She is still no where near night trained. I think I am going to start waking her up to go potty before I go to bed. I already limit her drinks before bed.

Emily is just Emily right now. She is my comedian...always keeping us laughing. She is talking so good now. She really wants to go to school. Hopefully they will get picked for the lottery thing here. I am hoping they can be in the same class but that is still up in the air. The school they would go to doesn't have a special ed class for pre-k so I don't know if Lauren will go somewhere else which means all three would go somewhere else which because of the medicine Kadian is on(which doesn't allow her body to sweat)we don't want her to ride the non-air condition bus so that means I would most likely have to drive them to that school. I need to call the Board of Ed here to find out what to do about Lauren.

Well that is about it for now. We are waiting on Daddy to get back from sea. We plan on celebrating Thanksgiving with Sean's mom and dad. Hopefully everyone will be well b/c of Sean's mom. Happy Thanksgiving everyone.

November 2007

This month has definitely been eventful. The girls are growing and learning so much. Their language skills are developing nicely. I received a notice from our insurance stating Lauren will no longer get speech therapy. Part of me is scared while the other part of me is happy that she is advancing so nicely. She is talking so much better. Emily is also talking alot more. They have the funniest accents. Kadian is starting to feel better. She had a virus that resembles strep throat. Of course I am now sick from them. Kadian is still having trouble with potty training but she is on some medicine to help with that problem. I am doing well. I am ready for Sean to be down here. It is stressful being the only parent...definitely hats off to all single moms. I can't imagine being the only parent. I need a break...so once he gets here I will be ready for some "me" time. Sean is looking forward to being down here. I know the girls will be so excited once he is here and especially since he will not be going back to Virginia but to pick up his car. I am looking forward to December:)