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!!!!