{almost time}

Well, it is only a few days before Benjamin's surgery with the neurosurgeon and to say I am nervous is an understatement ~ more like scared to death.

Never having been through actually surgery with any of my children...has me {very} on the edge...

I KNOW he'll do just fine. I have 100% confidence in our team of doctors at Children's here in DC...

BUT

It STILL doesn't stop me feeling what I am ~ inside.

As to the many who surround me every day think i am doing amazing well (considering everything that has happen so far) but I do have my moments...

AND

When they come...it is extremely hard.

Lucky for me, most of time EVERYTHING hits me is when I am alone at night...after checking in on my precious angels...and I see them sleeping there so peacefully...that I tend to break down...

OR

When I am on my morning walk with Benjamin (and when not in school Benjamin & Annabelle) that it hits me once again and tears start rolling down my cheeks. Thank Heavens for my sunglasses for the kiddos never suspect a thing.

My mom aka GRANDMA is due to arrive on Sunday afternoon. And while all the kiddos are super dooper excited, I know the real reason why she is coming and it is scaring me to death.

So here I am, trying to release some of my emotions ~ here on this blank page (that is now being filled with just words - to many of you)

BUT

To me...THIS is so much more.

And I am truly scared....

{{{I am going to try to keep everyone updated on Benjamin's status and recovery. Seeing how I will NOT be leaving his side until Thursday night when Keith is insisting that he would be staying with Benjamin while I am to go home and be with the girls, I am not sure how much I will be able to get posted ~ but I am sure going to try}}}

Happy 3rd Birthday Benjamin ~ October 15, 2010

As you can see (for the many photos displayed below)...

Benjamin truly had a wonderful 3rd birthday celebration!


Nothing like having your own cake to kick off our Friday night party!



Than getting the chance to eat it all...by...yourself!

{I swear I could just eat him up!}

Nothing better ~ right...

Except for celebrating your 3rd birthday with your two favorite little people...

Because of course Annabelle LOVED the cupcakes...

As well as Francesca did...

That I made just for them {seeing how their brother had his very own cake}!

Next it was PRESENT TIME!

And it didn't take Benjamin long to understand the meaning of the word "PRESENTS" (thanks to his two older & wiser sisters)

With a little bit of help from the both of them....

He was able to find what exactly was in that gift bag!

Nothing like a pair of bubble guns and....

And a Thomas The Train book....

To get this PRESENT thing started!

(that were all hand picked by both Annabelle & Francesca)

Next was our gift to him...

What could it be?

Seeing how we have a TON of girlie stuff in our house...we needed something "manly"!

{we couldn't have him playing with purses, high heels, and doll strollers all the time}

So after asking Keith what he thinks we should get him...

Only one BIG YELLOW thing came to mind...

And with a few clicks on my computer and an order with Amazon.com...

We got our little guy the perfect gift!

Just look at that smile...

and oh those little feet...

Benjamin is LOVING his new Big Yellow TONKA Truck!

(as the girls are loving it too!)

That was all on Friday night (the actual night of his birthday)...

Next came Saturday's celebration when Papa and Grandma C showed up...

Bringing a few gifts as well....

And what little boy doesn't LOVE his very own ATV!

Again that smile of his is saying it all!

Per Miss Sara's Request: Spine/Spinal Cord Surgery Date & Time...

Benjamin's neurosurgery (with Children's Hospital and Dr. Keating) is scheduled October 26th at 7:30AM...

We need to be there by 5:30 {that morning}...

As for our little man, he is doing amazingly well (than again he doesn't have a clue what's about to happen)...

As for Keith & me, we are emotionally a wreck but we are coming together {in ways we never imagined} not only for each other but also for Francesca & Annabelle, who do have an understanding on what's been going on and what's about to happen...

Phrase One...

So here we are at Phrase One on this very long journey...

After calling the neurosurgeon at Children's last Monday, we were told that we needed to see Dr Keating as soon as possible. We had our appointment Thursday morning on October 7th.

Three whole days I sat & waited, wondered and WORRIED...

On the day of our appointment, things couldn't have been worse. Annabelle (who was coming with us) was truly "out-of sorts" while Benjamin just wasn't feeling well. Not to mention, I was taking my first solo drive into DC...

Living only 16 miles from the hospital, you would think it would be a short drive in but not here...I left 9:30AM for our 11Am appointment and after 1 hour and 34 minutes of stopping more than driving, we made it to our appointment.

At first sight of Dr Keating after entering into his private office (yes, no appointments were available through the neurosurgery's clinic so our appointment was scheduled during Dr Keating's office time), I was very impressed! He handled both Benjamin and Annabelle with extreme care and was very understanding of our situation.

Dr Keating than let each of our children play with almost everything he had in his office...toys, books and yes - skeletons! Lucky for us, his office had these HUGE ceiling to floor glass windows that over looked the ever so busy Michigan Ave and a near by waterway that both Annabelle and Benjamin were have a great time looking out of (not to mention while enjoying the Fruit Loops I packed up as well).

Anyway, Dr Keating than explained to me what exactly is going on with Benjamin. According to him, Benjamin has a Tethered Spine, an Occult Spinal Dysraphism and some curving in his C disks among other things. As of now, Benjamin is scheduled for surgery on the 26th of October with Dr Keating and his team of neurosurgeons. He will be in the hospital for about 4-5 days. We were told that once the surgery takes place and he is in recovery, he will be placed in a "comatose state" while laying on his stomach for at least 3 days, to help with his healing, pain management, and most importantly so he doesn't move.

Between, myself, Keith, and my mom ~ He will NEVER be left alone during any of his time while at Children's. We are all working together to see that all of our children's needs will be taken care of...seeing how we have two Halloween school parties and parades schedule for that week as well.

Dr Keating also explained to me that once he comes home, I WILL need another set of hands available for he will STILL be recovering and will need 100% of my attention. Grandma has signed on for being those extra set of hands until Thursday (the week following his surgery).

As for the risks, there are many involved...

First off is 40% of paralysis of his legs (while Dr Keating is 100% confident this will not happen he still has to mention this is a risk)...

~ and ~

60% chance of never having normal functions of his bladder, urethra, kidneys, bowel and/or colon. 60%!!!!!

{{{now here is where the real issues begin...and only time will tell if all of THIS is related and/or will be affected}}}

While he kept explaining this 60% chance to me, I was not overly worried (I know I MUST be crazy) BUT seeing as we adopted Benjamin through the special needs/waiting child program as a child with bowel issues, we KNEW this is something that can happen. And we prepared ourselves for this a long time ago...(now this is not to say that I am NOT worried because believe me ~ I AM!)

Dr Keating is also not 100% his very LARGE fistula and his spine/spinal cord issues are related. We DO know his IMPERFORATE ANUS (which he was probably born with and had surgery for it while in China ~ that we were NEVER told about) are related. And that he does has some major issues that are going hand and hand with both diagnoses (his imperforate anus and his spinal issues).

Anyway, so here we are Sunday October 10th ~ ONLY FIVE DAYS AWAY FROM HIS 3RD BIRTHDAY!!!! I can't begin to imagine what this little boy is going to have to go through within the next few weeks. And here we are only on Phrase One of this very long road...

All I can say is finally we are getting some answers and we are moving forward which is all we ever wanted in order to help our son the best way possible.

I must admit, I am exhausted ~ more mentally than anything but I truly am. But I know I must keep moving, learning, praying, and fighting for our son. I can not THANK YOU ALL enough for all the love, support and prayers that you all offered to us during this very emotional & critical time. THANK YOU ~ THANK YOU ~ THANK YOU from the bottom of our hearts!

(((I also asked Dr Keating if Benjamin's weight and height issues can be related to his spine/spinal cord issues as well and he told us that as of now, he does not know. We will have to wait and see if things change once he has recovered from the surgery.)))

Twists & Turns....

Oh where do I begin...

So much has happened ~ so much to say...

I guess the best place for me to start is where I left off...

As many of you know, we had our appointment at Children's Hospital in DC back in August with the Urologist (Dr Pohl) and Surgeon (Dr Powell) and they too were convinced that Benjamin did have a fistula BUT they were not sure how many and IF there was something more going on...

So we were told that they would call us with some appointments (an ultra sound, VCUG, and MRI needed to be scheduled)...

Just one day after his appointment with Children's, Benjamin spiked a high fever and we were told to go to Children's Emergency Room, which we did. Our nurse, Leah (who is Dr Powell's right hand nurse & whose name you will hear me mention a lot) said (when I called her about his high fever) that he needed to get into them as soon as possible for they were afraid of a UTI - which could lead to kidney infection - which could lead to kidneys shut down. I did ask her if we could go to our local ER and she said she would rather us go to Children's seeing how we might be able to get a few of those testes we needed done. So off to Children's we went. By the time we got there, his fever was 104.6 at check in and they could NOT get a UA from his catheterizing (we now know why). Anyway, after spending the night, we left with no tests being done. He was fever free by the time we left and he hasn't had another fever since....

(that was on a Friday)

By Monday morning, I called Leah to let her know that no tests were done. She said she found out about the lacking tests Saturday morning after we were already discharged. Needless to say she and I were both upset.

A week goes by and still nothing else from Children's....

On the Friday of Labor Day weekend, Leah from Dr Powell's office calls me to let me know that the administration office at Children's would be calling me to set up our appointments.

I waited one week and that phone call never came...

I called back Leah to let her know and she said she would look into it (now remember she is only the nurse here)...

A few days alter, I received a message on my voice mail. The only way I knew it was from Children's was because of my caller ID. I could NOT understand more than two words the woman said on the message, not her name, not her phone number...only the words I understood were "not authorized". It was like she was reading to me from a speed script and the faster she said what she had to say, the better it was for her to get on with her other work - her message to me was just not that important. So in returned I called Leah and told her about the VERY UNPROFESSIONAL message I was left. Leah told me she would look into it and get back to me.

Two days later, Chentell called me and butter melted in her mouth when she talked to me (come to find out this was the girl that left me that very unclear message). She explained to me that she needed to check with our insurance because of that "not authorized". I hung up the phone and I waited for her to call me back which she said she would that day...

I waited and waited...

Than I called my insurance company to find out if anyone from Children's called them. The rep told me NO and that there is NO reasons why they should have to call my insurance because my insurance and Children's are participating partners. I called back Chentell and left a message for her what I was just told...

A few more days go by and I am now getting worked up. I feel like we have been placed on hold...and that our little boy was the one suffering. I called Leah and she said she would look into it.

One day later (if you are keeping track it is now September 22 almost 6 weeks since his first and only appointment with Children's) Leah calls me and we have a long talk. She tells me she is doing everything she can but the clerk in administration (aka Chentell) is telling her our insuracne is giving them problems. I explain to Leah what I was told by our insurance. I also explained to her that we do have a high deductible because we pay for our OWN COVERAGE. She said that she understood what I was saying and she will have Chentell call me ASAP...

Well, that ASAP from Chentell didn't come until he next day when I was told FIRMLY that our insurance EXPIRES on October 14th and there are NO appointments until November 22nd. She than just transfers me to the MRI department to talk to them. When I got the girl in the MRI department, she told me the same thing that seeing how our insurance expires on October 14th, they can NOT give me an appointment and their only next appointment was November 22nd which we will have no insurance. After she was done, I than tried to explain to this girl that NO our insurance does not EXPIRE on the 14th, our premiums are due on the 15th (which automatically come out of our banking account) and for that matter even if we didn't pay on the 15th, we still BY LAW have 30 days coverage. The girl than placed me on hold for 28 mins...never coming back...until I finally hung up. And guess who I called ~ yep Leah. I got her voice mail and I think I hit the roof! I told her everything that was said to me and how badly Children's was handling this. Here we are with our newly adoptive son who is in need of serious medical treatment and Children's is only worried about our insurance! I also told her that if it came down to us having to pay for his treatments we would ~ just get him in. It has been almost since weeks and still nothing. There was more said on that voice message by me and I know I broke down and cried during it as well. I was at the end of my rope - clinging onto it by my very short fingernails - getting ready to drop.

While I waited for Leah to return my phone call, I called our pediatrician's office. Dr Fishman was on vacation so I talked to her nurse, Liz, who got just as upset as I did over this whole mess. She told me she would have Dr Fishman call me Monday and I asked her if we should look into another hospital for his treatment. We hung up and I waited and cried my eyes out. I just sat on the couch feeling so helpless feeling like I failed. Than the phone rang and it was Liz. She told me her heart too broke over our story and she herself called Children's to see what happened and what needs to be done to get Benjamin taken care of. She also gave me some numbers of the people she spoke to and told me that if the nurse (Leah) doesn't call me back that day, that I NEED TO call the head of Dr Powell's office (Carol) and Children's (Terry) (which both #s she gave me). I told Liz that I have complete faith that Leah would call me back ~ she was the only one who ever does...

About an hour later, Leah did call me back after she did some researching herself and what was going on. She said her heart was breaking too over my message and she played it for her superiors to hear as well. Well, I guess it took me breaking down and getting "serious" for we finally got things moving ~ at lighting speed ~ because we were told to report to Children's the next day (September 23rd) for Benjamin's ultra sound and VCUG and Monday (the 27th) would be his MRI. Words can not begin to express how relieved I was to hear this...

I than called my mom aka Grandma that she needed to come down for I needed her...

Grandma arrived Friday morning about 8:45AM to come with me to the hospital and take that drive into DC with me.

He had both test done Friday and he was a champ! We went back for his MRI and he did amazingly well.

(the only problem we experienced was that the catheterizing kept traveling to his colon instead of the urethra ~ which is why when we were in the ER and they couldn't get any urine from him ~ the catheter kept going to his colon because of the very LARGE fistula he has.)

{{{And just so you know, the staff both medical and administration were WONDERFUL to us when we arrived on Friday. Flowers, gifts, free parking passes and so much more along with there sincere apologies. We were also told that the girls who were giving me all that trouble have been sternly reprimanded.}}}

Than we waited for the results...thinking I would get a call from Leah saying..."We will be doing his surgery on..." BUT that didn't happen.

This past Friday I got a phone call from Leah that changed everything. She told me that the MRI "showed abnormalities on his spine and spinal cord" and that since this has come up, we need to see the Neurosurgery first, let them do their surgery and then we would come back to Dr Powell for the fistula/and other corrective surgery (the MRI also showed a lot of bowel abnormalities which will need to be fixed as well & as for the VCUG it did show a very LARGE fistula which again is not good). I think when I heard her say that my knees hit the floor and I started shaking. Neurosurgery...oh this isn't good - is it? I than asked Leah to be straight with me or as straight as she can be and she told me, "This is extremely serious Mrs Leonard, and I need to call them first thing Monday morning." We than talked a bit more and I asked a ton of questions which she could not answer (which I totally understand)...

So now here it is Sunday, the day before I can call the Neurosurgery department at Children's. I have not slept more that 3 hours a night worried sick over our little boy. How can this be happening to him? He so does NOT deserve this. What did I do wrong to bring this onto my child? Why did it take so long for our paper work and the travel? Was there more I could have done to get there faster? All these questions keep me up at night.

I must admit, I visit my children's room often during the night. I watch them sleep ~ so peacefully and I give my mom's special kisses to each and every one of them. I can't imagine my life with out ANY of them.

So this is where I am at today...

Counting down the hours until I can call Children's ~ once again.

{{{And please understand this Leah (who you all know I mention a lot in this post) did MORE than a nurse should EVER have to do! Seeing how I have been surrounded by medical professionals my whole life (clinical med techs, doctors, pharmacists and so much more), I KNOW that Leah did more than she should have. If it wasn't for her, we would never be this far....}}}

Just look at our precious little boy! That smile melts my heart and keeps me fighting ~ for him and his rights!

As soon as we know anything I will let you all know...

{BTW ~ Prayers are so needed...}