Thursday, November 19, 2009

Holy moly--my surgery is going to be on Tuesday. OMG November 24th. That is literally right around the corner and I am now suddenly scared out of my mind. I go through PAC tomorrow and find out on Monday what time I go in on Tuesday morning.

Monday, November 16, 2009

Monday morning is here! Our weekend was good. Didn't do much, but yesterday November 15th, marked 3 years of Mikey's "Happy Hand Day". So hard to believe that 3 years ago he got his "new" hands. That surgery was the hardest one to put him through. I never thought that we would decide to operate o nhis hands, but he needed it. When he was learning to stand, the nubbins would catch on things {one instance required an ER vist, as he nearly ripped on off when it got stuck in a cupboard door}.

He was so cute post op though, with his little boxer hands! Gosh Mikey, you sure amaze Mommy!

I had my pre op done on Saturday morning and I am fit for surgery. My GP's faxed off the required form and I am hoping a date gets set this week. It will be so good to finally have a date! My doc also said that in light of the damage on my left side, it has now caused inflammation of my rotator cuff. I was prescribed anti-inflammatories {yippee for little yellow houses}, but to take them in combo with the T4's, makes for me tol feel yucky! I am grateful though, that I don't get sedated with them however.

I am hoping that this gets resolved soon {the inflammation} as it is making for work to become "hard to do". My typing gets messed up as my left arm/hand on occassion decides to "pass out" on me and I keep making mistakes. Really not a good thing to have happen-very frustrating!

Thursday, November 12, 2009

It's been a couple of days and I'm sorry for that. Things have been busy and in all honesty, I've been in terrible pain. I honestly feel like a 32-year-old living in the the body of a 90-year-old {one that is not full of "piss and vinegar" as my Gramma used to say!}. I don't know at times how I will be able to make it until January. My left side tends to seize up when it wants to. It usually begins in my left arm and hand. It becomes "fuzzy' feeling and very warm. Then it spreads to my left leg and my foot becomes so full of pins and needles that at times I am moved to tears.

It is very hard with work-being a medical assistant in front of the computer most times is a HUGE contributor to this. But I love my job. No matter how many times my GP tells me "oh how are you still working, especially full time?". I pretty much laugh at him each time. Sure I could "give up", but I can't. I love my job. He tells me I have my medical benefits and I know I am so gratefully lucky to have this, but I can not see myself taking that option. Not at this point anyways.

I would be very bored at home! I go crazy over stat holidays and summer/winter holidays! I miss the patients, I miss my docs, I miss work. I miss being OUTSIDE of my "Mom life". Plus, I am strong. I keep telling myself that. I went to school as a single mom of two little boys {Mikey was a year and Liam was 3}. THAT was hard. But I did it. I did it for THEM. I wanted them to be proud of me. I thought how it would be for them when they entered school and their friends would ask them "what does your mommy do". I didn't want them to say "my mommy can't work". I pushed through school. As much as I hated dropping them off at daycare every morning. I hated seeing their sad faces. They needed the other kids interaction and I really did want Mikey immursed in other kids to get "used" to THE questions that I knew we could not get around from.

I got off a bit on a tangent there. I appologize. I have been a bit emotional the past little bit. I strongly believe that with all that is going on in my body that it is throwing off my regular system. Blah. One day. Soon. I will be free of this pain. Of this nightmare. I keep getting told by everyone of the complications that could happen from this surgery. I am well aware that nothing is guaranteed. But I can not NOT try. I need to do this. I am too young to feel like this. I need to be able to enjoy playing with the boys {and stay up later than 7PM!}. Although I am also not looking forward to having an incision across the front of my neck {I really am not so secretly} hoping that the stenosis will be severe enough by OR time that he needs to convert to an incision on the back of my neck. In any case, it will all be worth it, right?

I also am such a dimwit and not sure if I mentioned that while I met with the Neurosurgeon I completely forgot to ask him about the mass in my supraclavicle. To be fair though, he was searching for my current scans {my GP's front end girls are really not on the ball} and then he got called to the ER. I am to meet with my GP this Saturday & I pray to God that he does not cancel that appointment, as he is famous for doing. If you could spare a few extra prayers for this too, I would greatly appreciate it!

Mikey was in the Saint City News November 6th, 2009 edition! He is on Page 14!!

And now, here are a couple of pictures for your enjoyment!!

Mikey chillin' in the bubbles {jaccuzi's and Lightning McQueen bubble bath need to be monitored!!}

And in this picture, you will see WHY I am the World's Proudest mom! This is a side-by-side picture of their school photos for 2009-2010. My word, they really are becoming big boys!

Hope you enojy the rest of your day & now I must get to work!
P.S. Does anyone else find the photo uploader here on Blogger is really a HUGE PITA {computer lingo for those that might be wondering!}?!!!

Tuesday, November 3, 2009

Sometimes I wonder. I wonder WTH this really is all for. I wonder what the point is. I wonder why even try. I wonder.

My daddy was told last week he has prostate cancer. Cancer.Cancer.Cancer. The friggin C word is every where. It is around every flippin' corner. Looming. Waiting.

Why I wonder. Is this "thing" the plague of our time. I've no doubt that that is true. I wonder though, I was never as aware of this damn disease until ironically I began working in Oncology. And it is THERE. It is HERE. It is everywhere and I hate it.hate it.hate it.hate it.hate it.

Thursday, October 29, 2009

Well, I am back. At work that is anyways! I did have my scan yesterday and thankfully it is over. I woke up yesterday morning, reached for my neck as I have been and thought for a second--hey! The bump is gone! But then I turned my neck and found it all over again. It hasn't moved and in fact it does feel larger {like it's in deeper now}. Of course they don't tell me much, but there is a tumor {and yes I hate it that this term is used}, but that is what any abnormal mass is called, regardless of a malignancy or not. She told me it is within my soft tissue {which I knew it wasn't on my bone}. But that was about all she could tell me. I meet with the Neurosurgeon next Thursday, so he will be able to access the results then, if I don't hear from my GP sooner. All in all, even if it is related to the benign mass I had removed last year, I will have them remove this one too. Only I will ask to be under GA and covered with antibio's first and after. I will not risk another sepsis bout in any way. Even though it is suspected it was urosepsis, I am not really up to risker another ICU visit. I've been there, done that and I am good with that now ;)
I've edited this post to attach a couple of pictures I have taken of Mikey's hands. We are so fortunate to be in contact with the inventor of the X Finger and hopefully {fingers croassed everyone-no, no pun intended there ;) } he will be able to use Mikey's hands to develop a pediatric version of his most incredible invention.

The first two pictures are of his left hand and the third and forth are of his right hand. Obviously they are palm up and straight on top view. I think they turned out wonderfully & really it amazes me to see the difference in both hands--even though I see them every day! They also display his Clinodactyly very well & you will note his left thumb is possibly the only digit affect {very slim chance though} by Amniotic Banding Syndrome. And we only say this {we as in his Ped, Genetist, myself and all the other specialists} because it does have the "tell-tale" ridge on the top.

And please forgive me, I am not happy with Blogger's photo insert options.

Tuesday, October 27, 2009

Thanks to my sweetest friend, I have an appointment for tomorrow morning at 10:30 to have my mass scanned!! This is most joyous news as the waiting is h-o-r-r-i-b-l-e, and that's putting it mildly.

Monday, October 26, 2009

Has not been a good Thursday-present...I've been trying to not make a big deal out of things. I have been doing pretty well. I have only been {very} anxiously awaiting my appointment with the Neurosurgeon {to discuss my options for my Cervical Spinal Stenosis} that was rescheduled until November 5th. Time has been going sooo slowly with that one!

Well Thursday night as I was putting on lotion, a habit I do at the same time as checking for enlarged nodes. Which I have been so lucky have not been a problem for some time. I did have a breast mass removed in 2001 which was benign, albeit a "strange cluster of masses, grape-like" is all I can remember the doctor telling me {I had it taken out at the same time I recovering from my botched facial reconstruction {thanks Paul Coffey} and osteomylitis that occured as the result of doctor negligence.

Last year {Feb 2008} I had a tmor removed from my left groin. Biopsy revealed a very rare type of tumor called Angiomyomatous Hamartoma. Even my Oncologists at work have never seen a case of this benign tumor. Following this, I had to have an MRI & CT scan both before and after I went in to the ICU for urosepsis and DIC. I was found to have a mass within my C5 and C6 in my neck. It is a fairly large mass for something that shouldn't be in your spinal column. Anyway, we've only been watching this thing. It's been ok, aside from causing me to now have the cervical spinal stenosis. I should also mention that after the ICU stay I've been monitored for "pre-lymphoma". I don't know that I've ever heard of this, but my blood counts have been off, I have the unexplained fatigue {but who as a mom doesn't?}, nightsweats that are horrible, loss of appetite etc. But a bone marrow biopsy I had last year came back as only a small amount of material to be biopsied, but other than that, fairly normal. Final decision with my Hemo Oncologist was that we'd just wait and see.

So back to Thursday, and the lotion incident. I found a new tumor. But this one is "feelable". It is in the middle of my clavicle. Supraclavicular tumor is how my GP called. it. Thankfully it is still small {about a 1 CM size}. But it is firm, not very mobile. My dear Poppa who passed away in August was incidentally diagnosed with Non Hodkins Lymphoma in March. This brought back all my fears, but I had been doing ok.

My next step is to wait for an ultrasound of that area. And then we go from there.

Wednesday, October 21, 2009

Well it has been a few days since an update. Things have been a bit up and down. We had a sad sad shopping experience over the weekend. I've not felt hurt like that for a very long time. I will post on that as soon as I can {it still breaks my heart}.

In any case, for those that wonder the severiety of Mikey's hand defect, here is a tracing of his hands that we did last night:

Pretty awesome though, aren't they? Especially when you realize that even though his defect is pretty severe, they do not inhibit his function at all! My Mr Amazing!

Friday, October 2, 2009

Today is one of those days. I feel miserable and grumpy. I am hating this so much. I have been suffering so much with my neck and I am so tired of my GP's comments like "wow, how do you manage to work" & "how are you able to get up in the morning" blah blah blah. Like seriously, yes it hurts, it hurts more than I could ever imagine it would. I am now suffering the effects as they spread from my neck and go down my back & arms and legs. My eyesight is also suffering and thus creating more intense migraines.

I have spinal cervical stenosis. We don't know why. We think that if it was related to getting hit by the hockey puck it would have shown by now. Granted it has been painful for quite a few years, however since I turned 30, they seem to exploded. I am not sure how big the mass within my spinal column has gotten. Last MRI was over a year ago. I also still have the enlarged lymph nodes in my neck and groin and when they flare up naturally my pain increases.

I am living on T4's and I can take 2 at a time with little to no relief. I am so worried to take them though, after my sepsis bout a year ago. The Tylenol 4's had caused my liver to be in failure and I didn't even know.

I hate the pain. It makes me a horrible mother. No one really understands it. I am so young for this to be as bad as it is & I hate it. I have no energy to play much with the boys. Working is a struggle. Acting normal is even harder. Putting on a smile and acting like I am ok feels like I am lying to everyone. I am scared of getting to a breaking point. I hate what the pain does to me. I am such a horrible mom to my precious boys. they should not have to suffer because of me.

I just want it all to go away. For surgery to happen and for me to be the kind of mom that my boys deserve...

Wednesday, September 30, 2009


Not much new has been going on. I've cut back on Liam's meds somewhat and he was not ready for that :( Monday he forgot his hoodie at school, so I sent him with a different one Tuesday. He forgot that one, as well as Monday's and as well as his lunch kit. Poor monkey. He's trying so hard & he has been doing so well.

And I decided to allow him to grow up somewhat--I set him up with his very own email address yesterday! Wow, how funny was I in reacting like he was getting married or graduating...But really, where did my 34 weeker NICU preemie miracle go? How is he to turn 9 in a couple of weeks? And I love that this year his birthday is the day before Thanksgiving {only happens once in a while}. Having him gives me so much to be thankful for.

Mikey is doing well in school too, I think. I've at least not gotten any phone calls from his teacher recently :). I am a little put out in that I dread every Friday. He comes home with his "Friday Envelope" and since school began, there is always a new form for me to sign asking permission to check him for this, that and the other. I get it--it is not a little boy in a "normal" little boy body. He is Mikey & he is unque. That being said, he is Mikey and a little boy still. He is not some sort of little guy that because he doesn't fit the "average" mold that there has to be more underneath & he MUST have other things going on with him. Yes his speech is a bit delayed. But he's been consistantly delay. In everything.

The weather is getting cold here and I nearly froze this morning when I rolled out of bed! It is strange to think that Guy and I are now entering full circle when measured by the seasons...We began in winter, been through spring and summer & are entering fall. Which will bring us to winter again...

Friday, September 25, 2009

So yesterday morning we had a new addition to our family. His name is Sal :)

He is a fire salamander {I am sure anyways--thanks in part to Google, but I could be wrong. I will post better pics when I get a chance and maybe someone can let me know if I'm right or wrong!}. He is primarily black, with yellow/greenish camo markings mostly on his underbelly. And he when he breathes, he resembles a frog, which the boys think is pretty cool!

He loved swimming in his water dish! We are getting the bigger, better tank ready for him and can't wait for his moving day! We are also going to be getting him a friend as soon as Memere and Pepere are able to find him one!

Wednesday, September 23, 2009

Here We Go...

I am going to start off by saying I will try my hardest to keep update with this Blog. It's been a quest for a long time, but for some reason work, kids and life in general seem to get in the way--and not neccessarily in that order ;)

I will begin with a little about me. My name is Diane and presently I am 32 years old. I have 2 beautiful boys; Liam is 8, will be 9 on October 11th, and Micheal {Mikey} is 5, will be 6 on December 19th. Both of my boys are miracles in themselves and their very being on earth is well deserved.

Liam was my baby that I thought I would never have. He was conceived after 2 pregnancy losses I had, the second loss was a set of Heterotopic twins. Liam's pregnancy was a trial from day one and his stubborness that he harbours today; no doubt helped to bring him into this world!

Mikey is Mikey! His pregnancy was a "fun" one as well. Although the problems with both pregnancies are very different, they were both very hard. Mikey has also been graced to carry the term "special needs" over his head for the rest of his life, although to know him there is nothing other than just "special" to him!

I will elaborate more on my little men when I have more time. For now though, that will have to tide you over.

I am engaged to a wonderful guy, Guy and although we were to be married this past summer, we decided it better to wait a little longer. Why rush when it's only a piece of paper, right honey ;) He has been a huge asset to mine and the boy's lives and every day is still so much fun. We are also very lucky in that I have a great relationship with Guy's parents with whom we all live together with. Yup so that's Guy's mom and dad, Guy and I and my boys. Over the summer we were lucky enough to even add Guy's 2 kids with us; his daughter Cloe, 14 and his son Xander, 4. Talk about a busy household! But I couldn't think of a better living arrangement for us right now.

I'm going to end this first post here, as I should get to work...