Move Over Rover!

I have some news to share with all of you.  We will be moving in with my father in law.  Next week we will be putting our house on the market to sell and looking for a house in which to live with him.  This situation will give us more support in many ways and we cannot be more happy to share our family and space with my father in law. 
LillyAnna has been flourishing with her new Nanny.  Since increasing her Humira (and the adjustment period following that) this fall LillyAnna is having less pain.  What comes with it is that she has been sick pretty much ever since.  Dr. R says she is good enough right now that we can get her vaccines.  It is always a give and take. 
My normal fears about Lil are rearing their ugly heads with our upcoming move but I am trying to be optimistic.  I don't know how to explain that although Lil is in less pain, there is still so much of her care that takes over our lives and makes me worry about how a move will affect her and her care.  The biggest difference now is that I have her nanny now and she makes all the difference.  She loves Lilly and loves our family and takes such good care of all of us but most especially Lil.  I never felt alone in all of this because I have all of you and loving family and an amazing husband.  But having someone who is here just to take care of and focus on Lil makes a big difference.  We have always been just on one side of qualifying for a nurse but never quite there.  This way (even though we pay for it out of pocket) I feel like I have that support.  I do not think I could even consider a move like this without her.  She is already offering to help me pack and keep the house in order for showings.  But what I know is that she will always keep Lil's care first.  And that is what is most important to us...

Home Again

It is 5am and I cannot sleep, but I am home! They told me this is a side effect of the hospital stay but I have to admit insomnia is something I have been lucky enough to have avoided my whole life so it is throwing me through a loop.  I also have to say that although the nurses at the hospital were some of the best I have ever dealt with (baring those at AI of course:) the hospital stay itself was awful.  I am not good at being helpless.  The first thing they did was insert a PICC line which pretty much rendered my right arm helpless and then hooked me up to an exorbitant number of IV drips which made any movement pretty much impossible.  Does it sound like I am complaining?  Let's just say I have a new appreciation for anyone who has spent any amount of time in the hospital and my respect for them and my own daughter has increased ten fold.  I think I had a healthy respect for that in the first place.   
It would all have been worth it but I came home to a headache that rocked the house.  This is also something they said is normal, "it happens all the time" were the nurse's exact words when I called the hospital. 
I am not giving up though.  Not yet.  If I will not give up on Lil I cannot give up on myself.  So I will continue to follow doctor's orders, try to sleep and hope the headaches stay away so I can enjoy my favorite time of year.  The good news?  Lil did great while I was away... no vomiting!  Thank you God!  The twins missed me a lot.  I am so happy to be home.  Those words are not even enough to express my gratitude for being home.  Thank you all for sticking with us...

Wemberly Worried

I thought Lil had a normal stomach bug.  Why I would think she had anything normal is beyond me.  She had been vomiting in the mornings and at night (which is not her pattern of just nighttime)  and having diarrhea which is very unusual.  This lasted about 24 hours and I thought we were over it.  For once I thought it was a normal stomach virus.  Then last night she woke up with severe pain in her stomach (side), it was so bad I gave her a dose of oxycodone.  There was vomiting and that same diarrhea.  This went on for about an hour before the medicine kicked in and she finally fell asleep.  I know she was in a lot of pain if she took medicine!  She seems fine this morning.  That is my biggest concern.  If it was a stomach bug she would be down and out, not completely fine and eating well for hours or even days and then the symtoms starting up again.  I am afraid this is a reaction to the increased Humira.  Dr. B told us any side effects would not be felt until about 3 months into the increase.  That is about where we are. 

My biggest concern is that I am going into the hospital today and I am supposed to be 'resting'.  Right.  Chris is going to have to deal with all of this by himself and work full time.  I am so worried about this baby.  I know Chris and Julie can handle it but when it comes to disease stuff I need to be involved.  Maybe it is just a stomach bug that is coming and going but what if it is not?  The pattern is just strange.  It is so hard to tell....

I am all ready for my trip to the hospital.  I have my bags packed, I am hydrating myself for my own IV.  I have written notes to the kids for each day I am in, what else can I do?  I told a friend I am going to try REALLY hard to rest so I can get out of there in 4 days.  We had a good laugh about that. She said, "I think that defeats the purpose."  I have a stack of books and they give you free WIFI but it costs 5$ a day for TV.  That is just ridiculous.  And I have my Christmas cards:)  I refuse to lose my Christmas spirit.  I thank God for my wonderful husband, amazing nanny and family and friends who have reached out to support me.  Thank you. 

 

The New Small Person

 

 

LillyAnna has been growing in leaps and bounds.  She looks more and more like a little girl and less like a baby every day.  However, with this recent illness that she cannot seem to kick she is losing weight. I just do not understand why she stops eating like this when she does not feel good.  Lil has congestion in her nose that I do not think has gone into her chest but it is making her cough so hard she is throwing up.  Then again she throws up so often it is hard to tell exactly why she is throwing up.  Whenever she runs she coughs but that has been happening for years as well.  I will be contacting the infamous Dr. R to see what he would like to do.  She is not running any fevers which is why I have not done anything so far but I want to figure this out before I go into the hospital.

Lil's first cannoli.

 

We went to our support group meeting the other night and there was a mom there who was, what I call, 'deep down in it'.  Listening to her share about the ups and downs she is experiencing and how hard it is was hard for me.  She shared that every time she thinks everything is ok something else happens.  I remember writing about that very thing here.  We are now in a place where everything seems to be going well.  It made me feel like I should be waiting for the other shoe to drop.  Every time I relax something happens.  I do not want to do that, just wait for something bad to happen but I also do not want to be blindsided.  This illness is a perfect example.  It is not normal to have a cold for 2 months, one that is bad enough you cough until you throw up and lose weight.  Her little clothes are starting to fall off of her. 

Redness on her cheeks is the beginning of the ulcerations on her face we are trying to prevent after last year's hospitalization. 

I have to make sure she is ok before I go into the hospital for my headaches.  I want to thank you for all of your support.  So many of you have told me I need to take care of myself but I hate this, I hate that I have to do this and I hate that I have to leave the kids and my husband.  I know I have to do it and my wonderful husband can handle things at the house so I am letting go of it and accepting it. But I hate it. 

 

Halloween!

 

Young and Old

I just spent a hour reading through old blog posts looking for the title of the one where I talk about Lil's dressing changes.  I could not find it.  What I did find was a lot of tears and a history of not only Lil's disease but also my topic for today.  My own headaches. 

I wish I could tell all of you that Lil is feeling better.  Is she better than she was three years ago in the hospital?  The answer is yes.  However, she has been pretty much the same for the past two years.  As a family we just now know what that will look like and how to handle it. 

This past month she has been vomiting every night.  I am worried she is losing weight.  Our reality is that she has enough weight on her right now that I am not even bothering to tell Dr. R because there is nothing to do about it whereas last year I would have been emailing him a couple of times and probably bringing her in for a check up.  Now I know that, although watching her vomit every night is horrible, we would not do anything about it until she loses enough weight or dehydrates herself. 

She is not eating much except sour cream and onion chips.  I don't even want to know what her blood work looks like.  And I am waiting to hear back from audiology about an appointment for her failed hearing test.  She has a terrible cough right now and is covered in pustules.  Most mornings, with this weather, she has been in pain with swollen fingers and bad hips.  I feel so bad for her.

I truly thank God for our amazing nanny, Julie everyday. 

Here is our new issue.  As most of you know, I have been suffering from chronic migraines for about 15 years.  For most of that time I would have about 1-2 a week which now I know is considered normal. 

When we received Lil's diagnosis and were in the hospital for over two months the first time, I was under a lot of stress.  During that time, we were so worried.  Lil was sick, we were doing dressing changes every other day.  They took two hours and they were excruciatingly painful for my 9 month old baby.  She had over 30 lesions and the bandages were sticky.  We had to peel them off and re-stick them.  It took me half an hour to set up and the aftermath... well you can imagine.  She screamed the whole time and sometimes just passed out from the pain in the middle.  My job was to hold her down and try to soothe her during this ordeal.  Right.  On top of that, we were so scared.  We had no idea how to treat this disease and it just kept spreading.  During all of this, Chris and I were raising the twins, coordinating their lives and I was deciding to quit my job. 

On the outside, everyone was telling me how strong I was but apparently there was a lot going on inside.  My brain was not happy.  I have been waiting 6 months for an appointment at Jefferson Headache Center being told they are the best.  The good thing is that I now have a diagnosis: transfer migraines.  The doctor compared it to getting a concussion.  He said that when you are a migraine sufferer who gets migraines once or twice a week and then something happens that puts your brain under severe stress (like some kind of trauma or stress- for me, Lil's illness) you put yourself into almost a concussion state.  What do you do when you have a concussion?  Rest.  I have never rested my brain.  His recommendation is to go into the hospital for a week.  There I will rest but also get IV medication to fix my brain.  Sounds crazy.  I was flabbergasted.  Here is the thing, I do not have a choice.  I have to do it.  I have a migraine 24 hours a day 7 days a week and it has been like this for about three years.  After his exam the doctor said I am one of the worst cases he has ever seen. It looks like I will be going in the first or second week of December.  I am scared to death.  My kids are going to freak out.  Especially little Chris. I have not yet told them. This has to be done.  My Aunt Tina and I keep talking about it because she was kind enough and smart enough to realize that I needed someone to go with me to this appointment.  She tells me I am so lucky to have so many people in my life that can help.  I am just so tired of asking for it. 

Young and Old
             ~Charles Kingsley
When all the world is young lad,
And all the trees are green;
And every goose a swan, lad,
And every lass a queen;
Then hey for boot and horse, lad,
And round the world away;
Young blood must have its course, lad,
And every dog his day.

When all the world is old, lad,
And all the trees are brown;
When all the sport is stale, lad,
And all the wheels run down;
Creep home, and take your place there,
The spent and maimed among:
God grant you find one face there,
You loved when all was young.

Quick Update

So we got some interesting (but not surprising) news today...

At Lil's yearly appointment, at which I did not yet have the guts to do her first vaccine, she failed her hearing test.  Now we will be scheduling an appointment with audiology.  I was not surprised to hear this news, something has not seemed quite right with her hearing.  Chris was not surprised either even though we have never talked about it.  As we were going through the test I swear the kid did not hear one thing that came through on the right side.  She just simply did not hear it. 

Band-Aids

Band-Aids
by Shel Silverstein
I have a Band-Aid on my finger,
One on my knee, and one on my nose,
One on my heel, and two on my shoulder,
Three on my elbow, and nine on my toes.
Two on my wrist, and one on my ankle,
One on my chin, and one on my thigh,
Four on my belly, and five on my bottom,
One on my forehead, and one on my eye.
One on my neck, and in case I might need em
I have a box of thirty-five more.
But oh! I do think it’s sort of a pity
I don’t have a cut or a sore!
Where the Sidewalk Ends, 1974

It has been a little while since I have written.  I promised myself, and said it out loud to the world, that I was going to pick my self up and get myself together.  The way I do that is to go inside, I hide.  For so long after my sister died I woke up every day in a cold sweat with tears running down my face.  I was at the risk of falling down into that deep, dark hole I promised I would never fall into again.  I was also feeling sorry for myself.  I hate that.  Through Lil's illness one feeling I have never entertained is 'why me?'  I honestly just never felt that way.  Don't get me wrong.  I got sad, I got mad. 

After my sister died so suddenly I could not help but start thinking 'why me?'  What had I done to deserve so much loss and sadness and pain in my life?  I lost my grandmother, my best friend, right before my wedding, I lost my mother three weeks before my twins were born, my beautiful baby lives every day with this horrid disease and now my sister died at 36 years old.  Not only had I lost all of these people but I live my life and raise my babies without them in a life with a chronically ill child.  After Renee died I could not help but allow those thoughts to take over and it was pulling me down to a very dark place. 

As I do, I pulled up my bootstraps, tied them tight and am moving on.  My dad and I still talk about my sister, friends are still sending me pictures they find of her on Facebook, one particular friend sends me little bits of love once a week and we got that little bit of good news about LillyAnna.  I also got some good news about my job.  I have been offered a salaried position from University of Delaware.  This means our financial position will be more secure in the future.  Right now things are still pretty tough financially but there is light at the end of the tunnel!  I am planning on taking the donation sight down in the next month if everything works out the way it is supposed to!  My only hope is that I will be able to pay it forward.  So many people have been so generous to us in so many different ways.  I will never be able to repay them but someday I will be able to help other people. 

Unfortunately LillyAnna is not feeling well.  She has been vomiting every night, once or twice, for about the last 3 weeks.  My dad, ever searching for answers, asked if it could be from the increase in Humira (remember we are going from Humira every 14 days to every 10 days).   We just started the increase yesterday actually.  Getting this class of drugs for a child of this age is not always easy.  Plus, this is just her pattern.  She is also doing her coughing thing.  So she is coughing more and more as the day goes on.  The more running around or physical activity she has the more she coughs and yes, the more she vomits.  How do you convince a 4 year old to stop running around and playing because it is going to make her throw up?   The answer is that you don't... believe me, I have tried. 
It is so hard to watch her run around and have fun only to watch her fall into a fit of coughing afterward.  We have already determined it is not due to asthma.  It sounds like a reflux cough to me but we have not yet been able to determine why her reflux acts up with her disease.  We also have no way to control it since NO ONE has been able to get her to take her oral meds.  Even when she was on the reflux meds she threw up though so I do not believe it would make much of a difference anyway.

I am so grateful for Julie, our new nanny.  I feel so comfortable leaving the house with her in charge of Lil, even when Lil feels awful.  I truly feel like Julie is a gift from God.  She has changed my life.  I had family watching Lil last year and I felt great leaving them with her but it was someone different every day and I also felt awful asking for their time every week.  It was really hard.  Now I have someone who is steady so Lil has someone who is there every day watching her daily patterns.  Julie is also great at getting her out and about when she is able but noticing ahead of time when she needs to rest.  On top of it, my job is only three days a week and I make my own schedule.  Julie is truly a partner in my household and a friend, I could ask for no more. 

Things are definitely coming together or at least they look like they are going to come together soon (see how I am positive again:)!  Either way I feel like I am in a better place.  We are making our way through this life....