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.