Tuesday, July 30, 2013

Please excuse my absence... life has been BUSY!

Well, I know that I'm long over due for an update, especially when I log into the blog to type this update and can barely remember my password!  Gee, where did we last leave off?  End of April?  Wow, if you blink things change real quick!  I think to make it easy, I'll give you updates for each of us - Sit tight, this could be a long one!


Well, since the surprise of our new CP diagnosis, Jenelle has been going through multiple evaluation sessions with California Children's Services (CCS).  The CP diagnosis qualifies her for services, which we hope will become helpful in the future as she needs orthopaedic equipment.  While the areas where Jenelle falls behind are more prominent during such evaluations, I find it useful to review what she is doing and see how far she has come.  We are still waiting on the report from CCS, who finalized the evaluation on July 8.  The medication Dr. Rosenfeld prescribed for her movement issues seems to be helping her mobility.  He decided to continue it at twice the dose and she seems to be doing well.

On July 1, we saw Dr. Shields for our 6 month evaluation.  He was very pleased to hear that her seizures have remained under control while we've been decreasing Felbatol.  I mentioned that just before our visit, we were seeing more Absence seizures so he decided to increase her dose of Onfi to 5mg in the AM, and 10mg in the PM.  In the weeks since making that change, we've seen fewer seizures as a whole, which is always a great thing... which leads me to the next topic... MOVING!

The Move:

We had been renting our last home and we were on a month to month lease after our two year lease had expired.  To our surprise, just before Mother's Day the owner decided to sell and the home had 4 offers in three days - two of which were cash!  Welcome to the real estate market in OC!  Once again we had to scramble to find a single level home in Tustin Unified to accommodate Jenelle's needs.  Luckily, we found a wonderful single level home a mile away, but also in the high school boundary where we want Jack to attend High School.  Prayers answered!  The new home is lovely, bigger and allows Brett to have his own private office for work - something he didn't have before.  This is helpful as Brett seems to work more from home these days... I'll get to that in a moment.

So far we are settled in, and with the stable seizure control Jenelle is doing really well with all the changes.  Her room is bigger so I am keeping some of her toys in her bedroom and in her designated play area in the family room.  There are times Jenelle walks on her own to her room to play by herself.  She seems very comfortable, and very happy.

Oh yes... Brett:

For a few months now, Brett had been experiencing a lot of pain in his neck.  Shortly before the move, he started to notice his arm and left hand getting numb, with tingling sensations.  He decided to get it checked, and what do you know - he needed surgery!  Yep, Brett had a bone spur on his neck that was jamming into a nerve into his spinal column; thus causing nerve damage in his left arm!  Looking back, I wish I had gone with him to the appointment with the orthopedic surgeon.  You see, Brett and Jack are traveling to Cooperstown on August 7 for a week long baseball tournament. Brett is the coach, so when discussing surgery, he wanted to make sure he'd be OK to travel to New York.  "Sure" says the surgeon... 6 week recovery period, you'll be fine to travel.

Well, to say the surgery was uneventful would be an understatement.  It took place 4 days after our move, so to say we were a little stressed is also an understatement.  Remember that Brett was borderline Type II Diabetes?  Well, just prior to surgery, they checked his blood sugar and it was 290... fasting!  It also didn't help that he failed the EKG.  The anesthesiologist really wanted to post pone surgery.  His words, "You look like a fit 44 year old man, but on paper you are an 80 year old woman!"  Great.  After much debate, they went ahead with the surgery.  Brett wanted to be recovered by his trip to NY, or so he thought.  As for the Diabetes, he is on medication right now, but because of the pain medication he needs to take with the neck surgery recovery; his numbers are automatically going to be high.  He will take a baseline fasting blood test this Friday and we'll go from there withour regular doctor.  He is also seeing a cardiologist on Monday to get that checked as well.

As for the surgery - he can feel his hand again, and there is a different kind of pain mostly from surgery, but not like what he had.  Turns out, the surgeon placed 3 screws into the front of his neck to relieve the pressure on the spinal cord, and he is wearing a neck brace and restricted from driving until our next visit in OCTOBER!  Yes, this is why I should have gone initially... to ask these types of questions.  Well, he is doing well, working from home and actually with Jack on summer vacation, it helps that he is home with him.  The only big problem is that he just can't drive.   


Jack has had a pretty good year so far, and thankfully even though we moved to a new school boundary, he will get to stay at Utt Middle School for 7th and 8th grade.  He really didn't like the idea of changing to a new school with the move, and for a moment he looked like he was going to have to move to a new school, but thankfully it all worked out.  What middle-schooler would want additional angst in changing schools?

Jack finished his last year of Little League and although he was voted onto the All Star team, Williamsport wouldn't approve his playing with the All Star Team at our new league.  He was asked to practice with the All Star team and we supported them at every game.  I can't believe the Little League days are behind us with Jack, and that he will be starting high school in two years.  He is growing into an amazing young man, and really, really loves his little sister.  I couldn't be more proud of him.


Well, if you recall, I went off the "happy pills" back in August.  Well, the depression creeped back and hit me pretty hard in April and May.  During this time I was also suffering from a lot of sciatic back pain, and of course the stress of the impending move.  I finally bit the bullet and realized that my life is not normal, and that given all the stressors I have in life, anti-depressants are going to be a necessity.  I had my 6 week follow up with the doctor last week, to see if the dose was appropriate.  As I sat there and told the doctor with a laugh and smile about our recent move, Brett's surgery, my being the family taxi driver, and God knows what else; she smiled and said "If you can sit there and laugh and smile about all this, the pills are working - I've sent in your re-fill!"

People always say that I share so much of our lives here at this blog, when in actuality... it's not even half of what is really going on in our lives.  I do realize the world is reading, and I do hold back lots of personal things.  However, I am willing to share issues like my depression because I know for fact, from comments and e-mails, that many of you are in similar situations.  Just knowing someone else is going through something similar can help.  I hope I am that hope for anyone in the same position.

And finally... while I am still cancer free, I've had some issues of concern that led me back to one more visit with Dr. Territo before her official retirement.  With the back pain came new bruising and fatigue.  I have been bruising in random places like behind my elbow, and on my chest, etc.  Well, having survived blood cancer once, I don't take these symptoms lightly.  UCLA agreed and got me in for a follow up very quickly.  They ran some blood work and found that I am having some clotting issues (Iron Binding Capacity, Ferrtin and possible DIC).  Now, this could be related to lots of things like all the pain killers and Aleve I had been taking for my back pain; or it could simply be how my body is reacting post-chemo/post cancer.  I have a follow up in August and we'll know more then.  For now, don't worry unless you have something to worry about! ;)


As a bonus for not updating in a while, here are some photos for you to enjoy! Thank you as always for the positive thoughts and continued prayers. I'll keep you posted - I promise!

Here I am with the doctor that saved my life - Dr. Mary Territo at UCLA. She officially retired as of July 1, 2013~  I will follow up with a new oncologist in August. And yes, I am holding a kleenex because I broke into tears when she told me she was retiring!

Brett and Jack after Jack's last official Little League game.

Jenelle on 4th of July.  Sitting so pretty and tall.

Jack on 4th of July.
Me and Brett (with his neck brace) on 4th of July.
Brett's neck after surgery. (He's taller too!)
Brett's first trip out to dinner after surgery.

Slider our cat enjoying the new back patio.

Jenelle bowling with cousin Alison.
Jenelle with her YMCA Aide Geri and a snake!

(This blog update took me 4 days to compose!)