I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Friday, February 20, 2015

Procedures and Hospital Stays

So we have a few procedures and hospital stays on the horizon.  Unfortunately Aaron's biopsy came back positive for another melanoma.  He will be going in next week to have a similar procedure to the one he had over the summer to remove additional tissue and check his margins.  Over the summer the area was on his chest, this time it is on the back of his arm. As I mentioned before, he has had two other areas that were biopsied  that were atypical so needless to say I'm a little concerned that he's having to have another procedure.  He's a little discouraged, and a little tired of being a pin cushion but I keep reminding him that's why he has to have his skin checks done religiously.   Easy for me to say since I'm not the one being cut every few months.

Alex will be going into the Epilepsy Monitoring Unit in two weeks for another stay to monitor her brain waves to see if there are any changes from her previous tests.  Additionally they will be monitoring what her sleep patterns look like, and if we're lucky, we will be able to capture a seizure.  I say lucky because it's the only time I ever pray for a seizure - because getting hooked up like this is not fun, for anyone.

Yesterday we went and met with the ENT at MCV that our neurologist suggested.  At this point it looks like surgery is the only answer to all of Alex's drool issues.  The ENT said Botox really wasn't a viable option for her for several reasons.  One, her problem is getting worse and she said she uses Botox for people who might need a quick fix or who have had some regression but are likely to regain swallowing functions.  Secondly, it's something that would have to be done every 3 to 6 months, the dosage needs to be tweaked several times to know the right amount that would work for her and each injection would require anesthesia and a hospital stay.    I liked the doctor, she answered all of the questions I had and was very thorough in her explanations. Alex was listening very intently to the doctor as well.  When we were done talking I asked Alex if this sounded good to her - if she was ready to be rid of bibs and being able to wear cute shirts that people could actually SEE and she smiled and raised those eyebrows as high as they would go.  The doctor said she does this surgery quite often and has seen great results.  Basically you have 6 major salivary glands (2 on each side).

She will be doing an excision of  her Submandibular glands  and will completely remove those glands and that will require two incisions under her neck. She will also do a bilateral ligation of the Parotid glands which will be done inside her mouth and she will tie off the glands so they cannot produce saliva.  We asked about dry mouth as we definitely do not want to trade one problem for another and she said the two remaining Sublingual glands, along with the hundreds of tiny salivary glands in her mouth will produce enough saliva to avoid dry mouth.  This surgery will hopefully make the amount of saliva that will be left manageable for Alex to swallow.  She'll have surgery on a Wednesday and it will be a one night stay. She'll be swollen for a few weeks so if there's any time to be thankful that she has a feeding tube, it would be now.  Alex has been laying on her bean bag in the living room watching TV in front of the fire place (for the record, it was 1 degree here this morning!)  as I write this -  I just went to change her position and she is completely soaked with spit - her shirt is soaked, her hair is soaked, her bean bag is soaked.    As much as I hate to think about another hospital stay or recovery period, I would be lying if I didn't say the thought of eliminating all that almost makes up for that.   I seriously am beginning to feel like a whack a mole game.  Every time I pick my head up from something I feel like I get bopped on the head with something else.  I think I'm going to try an ostrich approach to things in the future - maybe it's safer if I keep my head buried in the sand!

Thursday, February 12, 2015

Appointments, Appointments, Appointments!!

In the last week Aaron and Zach had their follow-up melanoma checks, I had my skin check, we had two physical therapy appointments, an occupational therapy appointment, an Ear, Nose and Throat appointment, two fundraisers, two basketball games, piano lessons, a birthday party, a Board meeting, a nursing manager visit, a facilitator visit, a school meeting and a neurology appointment.  That's on top of working, all the other 'typical' running around I do.  Whew - I'm tired!

Aaron had another spot that was biopsied so we are waiting on the result of that.  Alex had her neurology appointment today.  I hate going downtown for that appointment, the parking is terrible and just going down there gives me heart palpitations!  To be honest I don't always really like to hear what the doctor has to say about Alex.  In this post  she said her belief is that Alex has a degenerative brain disorder so every time we have a neurology appointment that conversation likes to rear it's ugly head in my mind.  My prayers for this appointment were answered because I do feel like we had a very productive appointment and none of that was brought up. We are waiting for the scheduler to call us with a date for Alex to be admitted into the EMU (Epilepsy Monitoring Unit) in the next week or so to see what her brain activity is up to and to also see what's going while she is sleeping since her seizure monitor has stopped working and it's not likely we'll be getting a suitable one in the near future. Ironically enough (or most likely she couldn't help but notice the copious amounts of drool) the doctor asked me if we had been to an ENT about Alex's drool.  I told her that we had been just this past week but it wasn't a very productive appointment and the doctor had no suggestions and couldn't answer any of the questions I had for him.  She said that collaborates with two pediatric ENT's and she and I were able to talk about two of the things I tried to talk to our other ENT about - the botox procedures for drool and the surgical procedure that can be done. I have some research to do but by the time we left our appointment her office already had us scheduled for an appointment next week with the new ENT.  Despite two phone calls to request lab slips prior to our appointment today, I never received them so we had to have her lab draws done while we were there to check her liver and kidney functions in addition to her medication levels.  She was SO good for the entire appointment AND her blood draw.  I'm thrilled to say we had an awesome phlebotomist who was able to fill all the vials she needed in just one stick - that is a huge blessing in itself so maybe that's why the lab slips never showed up!  This is not the best picture of her - but she was happy, happy with her hot pink band aid nonetheless when we were leaving.  (Funny little tidbit - we got home from her appointment and guess what was in the mailbox?  Her lab slips!)

It certainly doesn't look like things are going to slow down here any time soon so prayers for strength and endurance are welcomed!

Tuesday, February 3, 2015

A Tough Lesson Learned

14 years ago this May I lost a dear friend of mine, Beth, to ovarian cancer.  An added perk to moving into my very first apartment was that Beth lived just a few doors away from me and I could always count on her if I ever needed anything.  Beth was a funny, charismatic and crazy friend - to this day a huge smile will come to my face thinking about the tons of ridiculously funny things we did and I can still hear the silly voices she used to deliver a lot of her comedic dialogues.  When Beth passed away I was not quite three months pregnant with Alex. I had just found out and I remember clearly standing in the hospital parking lot with Beth's mom and her telling me, Beth knows you're having a baby and she's happy.  She passed right after that conversation.  Beth's death had a huge impact on me and Alexandra's middle name is Elizabeth, named after Beth.  I still miss Beth.  Sometimes Alex will look off into the distance and it's like she sees something I can't and then she'll laugh and giggle.  I will often times ask her if Beth's visiting with her and tell her not to listen to a word of any of her silly stories, I was never that crazy and goofy :)

I learned a valuable lesson from Beth and I vowed that I would make sure I would make time for my annual appointments every year without exception.  And I have.  I even started getting mammograms when I was 34.  Last January, like every January, I had my appointment scheduled but I had to cancel because of Alex's surgery.  I had rescheduled for the Spring but got sick with my throat and kidney infection and had to reschedule yet again for the Summer.  And with Summer came Aaron and Zach's melanoma drama and well, life got in the way and I never made it to my appointment.  This January I was back on track, I went to my appointment, had my check up, had my mammogram, made a mental check mark in my mind and went about my business.  A few days later I received a phone call that something had shown up on my mammogram and that I needed to go to an advanced imaging center at our local hospital.  Um, what?  First available appointment, two weeks away.  Really?  Do you have any idea the amount of stress and turmoil you can put yourself through with two weeks of playing the "What If" game?  I have had 7 mammograms and have never received a phone call.  And of course the same thought kept hitting me like a ton of bricks over and over and over again - you never went to your appointment last year.

I am VERY happy to say that after three hours of 3D Mammograms and ultrasounds, I am fine.  What they saw that represented a mass was overlapping tissue because apparently I have "very complex breast tissue" - seriously, even THAT has to be complex in my life?!?  Sorry, that is probably a lot more information that you ever needed to know about me, but, since I'm throwing it all out there (education and awareness are power, right?!?) I learned a few things that I think you need to know if you didn't already.  First is there are four types of density and the higher the density the more risk you have.  I have what is called heterogeneously dense tissue, the term refers to extremely high dense glandular tissue.  Research states that high breast density is a leading reason why mammography screenings fail to detect cancer in young and older women. Up to half of breast cancers cannot be seen on the mammogram in women with dense breasts and, unfortunately, women with heterogeneously dense breasts run the risk of having their breast cancer missed during the early stages of development. When the cancer is detected, it is often in the latter stages and requires invasive treatments with poorer prognosis for survival.  Hence my three hours of testing.  I asked why this is now just being brought to my attention after 7 previous mammograms and I was told that until recently doctor's were not required to let patient's know their level of density.  Sure enough in my research I found "As of 2014, New York, California, Virginia and Texas have breast density notification laws that require women to be informed about their breast density levels after a mammogram procedure."  That's only 4 states!  How can a state determine what you should or should not know about your own body??  Pretty mind boggling if you ask me.  If so many cancers are missed, why does every state not require this??   I also said I still didn't see how that would change the fact that I had "a mass" and was never tested any further than my routine mammograms and the response to that was technology has made leaps and bounds, but not enough leaps and bounds to battle density issues.

The morale of this post is "ladies - make time for your annual appointments!"  Life is crazy, it gets in the way, but you have nothing if you don't have your health.  We are always taking care of everyone and everything else in our lives, we have to take care of ourselves or we wont be able to care for those around us.  If you don't know what your risk factors are, ASK!  I know now that because of this "diagnosis" I will require 3D mammograms PLUS ultrasounds every year going forward, crazy life and all. 

Sorry if this was a TMI post, but if it helps just one person, I'm glad I shared. 

Sunday, February 1, 2015

A Whole New World

I've blogged before about Alex playing basketball and about how much we love Jacob's Chance and the Buddy Ball program.  And I've blogged before about Alex's new walker and how much she really seems to enjoy being in it.  For the most part, she is all smiles when she gets in it.  It gives her such a different perspective on things and opens up a whole new world.  Yesterday we took her walker to basketball and for the first time ever she "played" a few minutes not in her wheelchair, but walking! This walker can offer so many possibilities for new opportunities that she's never been able to experience before. 

A big thank you once again to Alex's PT, Shannon - even on a Saturday she's working and helping Alex to be the best she can be.  We definitely hit the PT lottery when we got Shannon 10 years ago!

I've also blogged before about the wonderful buddies Alex has and Mr. Steve did not skip a beat when we switched things up on him from the wheelchair to the walker.  Steve and his son Andrew were all smiles, as was Alex, walking the court.

This video is the very essence of the awesomeness that is buddy ball.  I wish I was standing on the opposite side so you could see Alex's face - but if you can hear past my yelling, you can hear the gym calling her name.  And you'll notice how both teams just stood patiently waiting for her to shoot the basket.  Once the basket went in she was so excited and was all smiles, she was so proud of herself!!

Is it any wonder I leave every game with a big smile on my face??

And speaking of smiles on my face, thank you to everyone who reached out to me on my last post. Yes, things are really hard sometimes but I truly have the best friends, family and people who are there to support me and I am so thankful for that when times are tough.  A big thank you to my friend Monique for these beautiful flowers she sent me.  

Part of her card said "It takes both rain and sunshine to make a rainbow."  Such a simple statement that is so true and so easy to forget.