It surpasses most feats of control that I have ever seen in recent times. I cringe when Brian does this and I wish we could find a solution for it: I don’t know how Brian is able to hold his urine for several hours at a time. He will not go at school. He typically voids in the morning before the bus arrives and will go after he arrives home, but sometimes not until dinner. I am fascinated how this is even humanly possible and simultaneously concerned that he can damage his kidneys. Brian is given every opportunity throughout the day to drink fluids, but will typically take only small amounts at a time, unless it is very hot outside. We even had a visit to the emergency room last summer because Brian hadn’t gone to the bathroom in 17 hours! My menopausal bladder couldn’t  even imagine holding for that long! After blood work and a renal ultrasound, (which thank goodness were normal), he eventually went, but to say that this whole ordeal was stressful would have been an understatement. The ER physician just shrugged his shoulders and said “some kids just do this for no reason” and advised us to keep pumping fluids into Brian. This is the tricky part, as he is not a big beverage enthusiast, so while we try to do just that, we also supplement his liquid intake with foods, such as yogurts and mandarin oranges.

We have also presented Brian with a variety of different beverages to sample, with the hopes that he will really like one particular flavor and will want to drink lots of it. I had gone to the supermarket with this mission in mind and loaded up the shopping cart with 20 different kinds of juice/flavored waters. The cashier joked that I must be really thirsty upon check out, which was my exact hope for Brian, or at least to have a “thirst/preference” for one of these drinks. The results were ambivalent at best, but we keep trying…Children with sensory integration disorder require several trials of practice whenever anything new is presented to them. Slow and steady is necessary, along with lots of patience and praise. So far, Brian is taking sips here and there of everything, so at least it’s progress, but no Favorite Beverage yet. It can be exhausting, so I need to keep my humor intact and take some deep breaths….

Just to spice things up- Brian had 2 episodes of blood in his urine a couple of months ago, with the last episode warranting another visit to the ER. This time, I was more prepared and grabbed a pair of nail clippers and manicure scissors on the way out the door. I know Brian would receive Versed, a drug that provides delicious conscious sedation ( for more blood work and diagnostic testing), making any sensory activity possible, such as trimming Brian finger and toe nails, and hair. These personal grooming activities are otherwise very challenging, especially haircuts, which requires the strength of Hercules and 3 adults. My husband and I never sweat so much then after one of these episodes. The Haircutting Wars will be a separate blog of its own, so stay tuned! In the meantime, back in the ER….

More extensive blood labs were taken under Versed, (in addition to Brian’s annual blood labs, might as well kill 2 birds with the one stone and avoid a meltdown at Lab Corp!)and the results were once again normal, except for the white blood cell counts, which were high, and a blood marker called ASO, that was also very elevated and indicated that Brian had been exposed to strep at some point over this past year, (which he had been), actually 2 times with strep infections of the throat. I learned that strep can sometimes travel to the kidneys and do some serious damage. You can imagine my anxiety upon this discovery, trying nevertheless to be calm, but finding this difficult because of Brian’s extensive medical history.  This was probably  a urinary tract infection, (UTI), but the ER doctor said that only a postive urine culture could confirm that.  We would have to wait 48 hours for that result- so in the meantime, it was presumed that Brian had a UTI and he was to begin a course of antibiotics immediately. The second level of the renal ultrasound was normal, thank goodness, so at least structurally everything was OK, as well as Brian’s urinary function. So a clipped and coiffed Brian was discharged from the ER with a prescription in hand and a desire for the movie, “Frozen”.  His wish was granted after the intial dose of antibiotic was taken and then we waited for the urine culture results…

Fast forward to 48 hours later, the result is in, and it is: negative!  The ER doc recommended that we see a pediatric nephrologist as soon as possible, and to stop the antiobiotic. We were given a referral and set up the appointment for the following week.  Miraculously, I was able to collect a urine sample from Brian 30 minutes before our appointment. The high ASO blood lab result was still heavy on my mind right before we entered the doctors office, as much as I tried to dismiss it. You would think after everything Brian has been through: open heart surgery, an orchiopexy, eye surgery, ear.tubes, and various orthopedic challenges, that I would be somehow stronger as a result  or used to medical adventures. Heck, I’m a colon cancer survivor and went through surgery and 12 rounds of chemo!  But when it comes to our children, that instinct to protect them at all times is so powerful that it can supercede logic and rational thought. I was definitely having one of those moments again.

 

The pediatric nephrologist is warm and engaging . Brian connects with her immediately; I am at ease within a minute. She examines him without resistance on his part- unbelievable, it’s all good so far. Doctor then queries me, reviews the extensive ER report, tests Brian’s urine with the dipstick, then smiles broadly. The urine is normal! Drum roll……….and the verdict is: viral cystitis . This is a viral bladder infection, which can cause bleeding and takes a month to clear up, hence the 2 bleeding episodes that Brian had had. It also explains why the urine culture was negative, as it was not a bacterial infection. Viral
cystitis happens infrequently, which made me smile as Brian often  seems to be on the “rare line” when it comes to his medical issues. In this instance, the bladder was acting a little crazy, like a mad bladder does, when it has a viral infection. It presents like a UTI, but it’s not. It took an ER visit to get this ball rolling and the story concluded happily with this lovely pediatric nephrologist, so I am truly grateful. Regarding that pesky ASO blood lab result?…Doctor waved her hand dismissively when this subject came up- “This value means nothing-it only shows that Brian was exposed to strep at some point over the past year and has nothing to do with his kidney function. The number will return to the normal range over time”.  Hip,Hip, Hooray!! 🙂

But the best was yet to come. I explained Brian’s beverage intake challenges with the doctor. She agreed that Brian needs to drink more (though the viral cystitis was not related to how much Brian was or was not drinking) and suggested trying Crystal Lite. It’s one of the 20 beverages that we did NOT try yet and have lots of at home! Doctor further explained that Crystal Lite has an ingredient in it that breaks down kidney stones, while being tasty, and low in calories. Triple Bonus! And it’s super cheap to buy in bulk because of Costco. We already had tons of it at home, as my husband enjoys an “Arnold Palmer”,.which is Crystal Lite ice tea  and  lemonade mixed together.

As soon as we arrived home, I made an “Arnold Palmer” for Master Brian and he enjoyed it!  He didn’t guzzle it down, but he is taking at least more than a sip at a time, which is a better result than what we had with the other 20 beverages. How ironic that we have had Crystal Lite at  home for years now, but the idea for Brian to try it had totally eluded me. Brian continues to drink more Crystal Lite and we continue to explore other flavors, without breaking the bank. And as far as going to the bathroom? Brian still won’t go at school, but he is voiding more, as he drinks more. One day at a time…

It took a circuitous adventure to reach this happy ending, but I’m sure grateful that the troublemaker in this episode was just a mad bladder and nothing more. The Crystal Lite suggestion by the nephrologist proved to be brilliant and accepted by Brian, which is a huge deal and a relief for us.
Good ol’ “Arnold Palmers”- what a difference the right beverage makes for a young boy’s palate and a Mom’s peace of mind- cheers!!

Until next time- thanks for reading! 🙂

Ah, the infamous Tricky Tray, the annual super fundraiser that generates thousands of dollars for a worthy cause. For those of you who may not be familiar with one- local businesses, families, and friends donate lovely gifts/gift cards which are wrapped in beautiful  baskets to be won by some of the lucky attendees. The mammoth amount of work that goes into the planning and execution of a Tricky Tray is mind-blowing! The solicitation of the gifts, the wrapping of approximately 300+ baskets (in our case) the creation of the program, and so much more, is exhausting, but simultaneously rewarding. Brian’s school held its Tricky Tray a few weeks ago at a local catering facility, with almost 450 attendees! This year’s very worthy cause is for a new adaptive playground, designed by the school’s occupational and physical therapists. It will be an extremely valuable asset for many students at the school who struggle with fine motor and gross motor challenges, enabling them to further hone their skills, while having fun at the same time.

The Moms
responsible for the huge success of this year’s Tricky Tray are some of the hardest working/giving women that I know. They devoted several  weeks
of their free time before the actual event, despite having such full plates with their own children’s special needs. Their attention to detail, their willingness to help in any way possible, their creativity and determination to pull together a fabulous fundraiser, was inspirational. I am proud to know them and respect all the hard work that they do throughout the school year to ensure that our kids have enriching social and educational opportunities. I have very recently joined the ranks of Brian school’s Parent/Teacher Association (which is called the Parents Professional Organization, or PPO)
and am glad that I have.  I realize that the children are not the only ones who benefit from this organization.

I too, am a blessed recipient of a number of gifts as a result of my recent volunteering
with the PPO. Some are obvious, for example, the joy I receive knowing that Brian and his fellow students get to do a variety of things, like
going on field trips, experience parties, and other social events, which is great for their overall learning and  all made possible by the PPO. Volunteering my time also allows me to forge  new friendships with other  like-minded parents, which is a huge gift!  One of the struggles in the special needs journey is the tendency to become isolated and bogged down by the endless details of our child’s care. The caretaking can be all-consuming, both physically and mentally, so it is good to connect with other parents who totally “get it”, even though the needs of our children are often different. We need each other and friendships to get through the ups and downs of this life. Finally, I receive the Gift of Healthy Distraction, which is truly a blessing, because I realize with each passing day that while I do as much as possible to create Brian’s Best Life, I  still struggle with those aspects of Brian’s life that are challenging and will remain so for the duration.
I find that I can best cope with this truth when my attention  and energies are channeled into productive, meaningful, activity. It really is a “win win” for all involved!

Our life with Brian is often an adventure with its unique twists and turns, never boring, and often eventful. Volunteering adds richness and flavor to this journey in ways that I would have never imagined,  while meeting great people along the way.  I am glad for this opportunity to be involved, for in the final analysis, we parents need one another for support and encouragement as much as our children need life experiences that will help them to grow.

Until next time…thanks for reading! 🙂

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Brian and his doctors, 7 specialists and the local pediatrician specifically, have played an integral role in maintaining Brian’s health with great care and compassion. These specialists include: an otolaryngologist, opthamologist, cardiologist, hematologist, hepatologist, orthopedic surgeon, and neuro developmental pediatrician. Whew!! That’s a mouthful and quite the “all star cast”! Brian is pictured here with his orthopedic surgeon, who has been a member of Team Brian for over a decade. It has taken a lot of office visits and a lot of practice over the years for Brian to become comfortable with these physicians and their staff. Remarkably, we have still retained the services of all the specialists that Brian has seen since he was a toddler. Of course, that will inevitably change with the passage of time as these doctors retire. There are also additional specialists along the way who will join Team Brian, like  Specialist #8, the pediatric nephrologist that Brian had an appointment with yesterday for the first time. Brian was ultimately diagnosed with viral cystitis, aka, ” The Bladder Blah Blues”. It was the perfect ending to an eventful, scary tale that began over a month ago. Let me explain…

Approximately 5 weeks ago, Brian had  some blood in his urine before bedtime on a Friday night.( Why do medical issues always happen on a weekend night?!) It was definitely disturbing to see and totally unexpected. These are the times I really wish Brian could speak and tell us how he is feeling- we could only go by his behavior. Brian wasn’t very hungry that evening (which is a huge red flag in itself) and was somewhat irritable. These symptoms could mean just about anything; maybe it was a flu coming on, maybe he had an earache, etc.,.but the last thing we expected to see was  hematuria. Fortunately, we have a local pediatric “doc in the box” that is open until midnight. We brought Brian there and he was diagnosed with a urinary tract infection (UTI) and a prescription was called in for an antibiotic. Two days later, the urine culture came back negative and we were told to stop the medicine.
We were referred back to the local pediatrician, who wanted Brian to give another urine sample. The bleeding episode did not recur and then life got very busy for us for 2 weeks. I had planned on taking Brian’s urine sample to Lab Corp on a particular morning then came the unexpected…again! More blood in the urine that very morning, almost 3 weeks after the original episode. This time we went to the emergency room (ER). A renal ultrasound was done, along with a series of blood labs, and this time the white blood cell counts were extremely high. Antibiotics were started again, then the urine culture came back negative again. Argggh!!! This time, we were told that Brian should  finish the antibiotic. We were then referred to the pediatric nephrologist who determined after she reviewed all the ER records, blood labs,  renal ultrasound, and a urine sample from yesterday,  that Brian merely picked up a virus that had
irritated his bladder ( viral
cystitis). Viral cystitis causes bleeding and can take up to a month to clear from body (hence, the 2 bleeding episodes in 3 weeks).

Three hours at the pediatric urgent care, 6 hours in the ER, several forms to fill out, and a specialist visit later, we finally have resolution and the diagnosis is a simple bladder virus. Don’t get me wrong, I’m very  grateful that it was nothing more serious, but we could have definitely  done without the exhausting, circuitous route in order to reach this conclusion. Welcome to the world of medicine, which is truly an art and not a science. At least other things were ruled out and Brian’s annual blood labs were done, thanks to Fabulous Versed, a concious sedation that makes all procedures possible without tears. Versed is definitely Mom’s Big Helper, too bad we can’t take a prescription to go and use it for haircuts and other sensory nightmares that Brian experiences. We can only hope that this may be a possibility in the future, lol!

In the meantime, the medical adventures will continue to come and go, as they are part of the Trisomy 21 legacy. Brian has been strong and courageous throughout  all of his procedures from open heart surgery to eye surgery. Viral cystitis is small potatoes compared to these major medical procedures, that is for sure! We hate to see our kids go through any test, big or small, but they are often more resilient than we give them credit for. Brian’s strength in his challenges  is the stuff that legends are made of.  It gives me the ability to carry on when some days even getting out of bed is an act of courage. My son is a hero, a Marvel with Moxie, and always will be. 🙂

It’s Official! My name is Brenda McDonnell, and I’ve been a blogger for 3 weeks now via WordPress, sharing the joys, trials, and tribulations of raising my son, Brian, who has Down syndrome and autism. I call him my Marvel, who has a lot of Moxie, hence, my newly created Facebook page, Marvels and Moxie. For the past 3 weeks, my WordPress blog had been linked to my personal Facebook page, but effective immediately, future WordPress blogs will be linked
right here at Marvels and Moxie! Computer- savy I am not, it’s been an adventure to say the least, but I am definitely learning!! 🙂

I look forward to sharing Brian’s ongoing special needs journey with you in the months to come. It is my hope that you will find solace, humor, and support here. No man is an island, particularly in the special needs world, where support, understanding, and resources are essential for our children and their caretakers.

Until we meet again…thanks for reading! 🙂

It generally happens at the most inappropriate times, rain, snow, or shine. It means: ” I don’t want to”, “I don’t understand this”, or “I’m tired”.
It can be frustrating and/or annoying for all involved and I have often received phone calls from school regarding it- introducing the tried and true, “stop, drop, and flop”. I first heard this term from one of Brian’s physical therapists years ago when he attended a center-based early intervention program. A child will suddenly stop in their steps, drop to the  ground, and refuse to get up. This phenomenon is quite common amongst people with Down syndrome. I always associated this behavior with small children, but like many other adventures along the special needs journey, these episodes can last even into adulthood. 😦

Gross motor movement has always been a struggle for Brian. He was a late walker at 4 years old and didn’t let go of a hand until nearly 5 years old. Brian has worn a variety of orthotics since he was 2 yrs. old due to severe ankle pronation in both feet. Brian is also flat-footed and low-toned. These ingredients are a recipe for struggle and fatigue, which can also cause behaviors, I am sure. Add in transition troubles because of an unfamiliar situation or just a plain old tween, “I don’t wanna”, makes it very challenging to motivate a 105 lb. boy to get up and get going. Over the years, all kinds of tactics have been tried to motivate Brian to move, some of them have included: food, music, tokens to earn rewards, verbal praise, and more music. Each of these motivators have been vital, successful at different times, and necessary. Redirection/distraction have also worked. Sometimes Brian gets further than other times. Sometimes nothing works initially and we have to really wait Brian out- 1 Mississippi, 2.Mississippi, etc.
It’s especially during these particular times that I need a LOT of extra patience and a  glass of wine later on, just sayin’! 🙂

In Brian’s defense, there has been , albeit gradual, improvement with fewer instances of dropping to the ground, especially over this past year. At that time, Brian had started a new school and daily transitions were tough for quite a while, with a LOT of stop, drop, and flop episodes. It was discouraging and I began to wonder at a certain point how Brian was going to ever move forward, literally. Then slowly, gradually, eventually, there was less dropping and more walking, step by step, inch by inch…

And then it happened!! A culmination of 14 months of patience, persistence, and praise with rewards paid off! I received a note from Brian’s physical therapist yesterday that stated Brian walked around the school building with his classmates TWICE without dropping once !
Hooray! Happy Dance!  I believe that the ” highs are higher and the lows are lower” when experiencing these life events with our children. We greatly appreciate every little thing that they have worked so hard for (and what most of us take for granted). Conversely, adversities that our children go through  have the potential sometimes to really bring us down, as the struggles can be intense and prolonged. I try to remember Brian’s successes  during these tough times and to have very flexible expectations, but its not always easy.

Longterm success for Brian is generally  correlated  with a structured routine, a good nights sleep,  LOTS of time, and LOTS of rewards!  I have to constantly  remind myself of these things  if I forget or focus on what is NOT happening in the moment. It’s a mental exercise that I must practice daily, lest I become negative and lose perspective. This can happen all too easy if I allow it.

In the meantime, I will savor this victorious moment and look forward to the next one, for it will surely come, step by step, and in Brian’s own time, not mine. 🙂

Until next time….thanks for reading!

She is beautiful, kind, feisty, and courageous. She is called Mom, Nana, Friend, Auntie, and Sister. She is one of a kind, with her Irish brogue and her heart of gold. This is Meta, my beloved Mom, and the reason why I celebrate Mothers Day this Sunday. It is also Mom’s 85th birthday today, can you believe it looking at this picture taken 6 months ago?!  Mom is truly 85 years young, and I feel so very blessed to still have her with us. My Dad passed away 2 years ago from lung cancer and it was a devastating blow for our entire family, especially for Mom. They were married for over 60 years, had known each other for 64 years, and were the best of BFFs. They were truly 2 peas in a pod and did EVERYTHING together! As you can imagine, the first year after Dad’s passing was so incredibly painful; everything was a trigger, a memory, of what they had done or shared together. While the pain will always remain, I have noticed that Mom has become much stronger over this past year in her determination to get involved in activities, meet up with her friends, just like she used to do with Dad. I know that he is extremely proud of her, along with the rest of the family because of the tremendous progress she has made during these past several months. It is so good to see Mom joyfully  participating  in life once more, with her beautiful smile and energy that is so a part of who she is.

Mom loves being “Nana” to her 6 beautiful grandchildren. She has their pictures displayed throughout her home and loves to spend time with each one. Mom also happens to be Brian’s biggest fan! Her devotion to him and concern for everything that happens in his life, has always been the case since Brian’s birth. Brian is Nana’s “wee man”!  Mom will often say how Brian is such a special angel in our family. She has treasured the visits to his school on Special Persons Day and marvels at his progress overall. Mom will cheer Jim and I on too, always telling us how we are such great parents, how proud she is and how much she loves us. No matter how old you are, it’s always wonderful  to hear compliments from your Mom.

I  enjoy our daily conversations and we usually get together a few days a week. I’ll take Mom to medical appointments, church, or shopping while Brian is in school and we’ll often have lunch afterwards. We laugh, cry, and sigh together. We bounce ideas off of one another. I often seek her listening ear and wise counsel when it comes to life’s challenges. I treasure her “Hello Love”, when she hears my voice on the phone. I love creating these wonderful memories with Mom, it’s the stuff that a good life is truly made of.

So, it’s a double blessing of Mom’s  birthday and Mothers Day that we honor and celebrate this weekend! Thank you, Mom, for showing me by your example what it takes to be a good Mom. You are a marvel who inspires your family with your moxie and deep faith. You mean the world to me and I love you with all of my heart. ♡♡♡♡♡♡♡♡♡

Happy Mothers Day to all!

Until we meet again, thanks for reading. 🙂

Brian is a pretty happy camper most mornings (see above picture) while waiting for the school van, with the exception of Mondays, as transitioning off the weekend is generally difficult. Can’t say I blame him, as I dislike Mondays too! Extra coffee and music get our Mondays going in the right direction, along with Brian’s Transportation Dream Team to school. We love our current driver and aide! They treat Brian with great care,  kindness, and patience. I never have to think twice about his safety and am confident that he is in the best of hands. What a blessing! 🙂 I tell them all the time that they can’t leave until he finishes school at 21 yrs.old. Unfortunately, we have also had a bad bussing experience in the past, which is sadly not unusual in the special education world. More on that later…

Special needs school bussing is often underrated, yet is  the most essential and important part of the students day as far as I’m concerned. The bus driver and aide are transporting our precious cargo to and from school and are therefore responsible for their safety and well being. It is a huge charge and not one to be taken lightly. It is especially concerning if your child is non-verbal, like Brian is, or if your child has limited language or is unable to communicate their feelings. Our kids can be potential targets for abuse; it is awful that this can happen, which is all the more reason why we parents need to be extremely vigilant about our kids transportation providers.

When I look back now, it is hilarious, but I was one of those “helicopter” Moms when Brian took his first bus to school (in town) at 4 years old.
There was no stopping me- I interrogated the driver and aide about safety procedures , made them demonstrate how they would buckle Brian in his seat, asked for all possible phone numbers, just in case something happened during the 4 mile drive. I drove behind them when they took Brian to school for the first week too. The driver and aide must have thought I was nuts, which I was a little, of course, lol, but with a little boy who is nonverbal, it made a lot of sense to me. They had my son after all! In time, the driver and aide gained my trust and I was able to relax, knowing all was well. It was difficult to part ways with these wonderful folks when Brian eventually changed schools. It was the very first time that  I really  understood what it must be like for Brian to experience change- it’s really hard to transition to  new and unfamiliar people, places, and things.

We had a very similar experience with the next bus driver and bus aides assigned to Brian and 4 other students. Over time, I felt comfortable with this bus staff, as they too, proved to be very competent and caring. In fact, I went as far as writing letters of commendation to the transportation supervisor, highlighting the bus staffs dedication to the children and professionalism on the job. It was  the perfect scenario for 6 years and then things changed when Brian switched schools a little over a year ago.

First impressions are very telling and gut instinct is there for a reason. My initial impressions and of the new bus driver and aide this time around were not as positive as previously. The driver was unpleasant and the assigned aide seemed to be unfocused. I made specific requests for basic accommodations for Brian ( to make the ride more pleasant and to ensure an on time arrival at school) and they were met with resistance. I was quite befuddled by such a reaction, (my requests were never a problem before for the previous transportation companies) and presented my concerns to the owner of the bus company in a polite and professional manner. He said he would see what he could do. The very next day during the middle of Brian’s IEP meeting, we received copies of  3 scathing memos from the bus company owner sent to the transportation manager at Brian’s school claiming that I was being “unreasonable” with my requests, and how Brian was “causing a disturbance on the bus”. What?!  This is a bus company who allegedly  services children with SPECIAL NEEDS!! Shame on them! Needless to say, Brian never went back on that particular bus again, effective that day! It actually worked out for the best, eventually leading us to our current bus driver and aide, thank goodness!

Unfortunately, incompetence and unprofessional behavior from those individuals entrusted to our children’s care is an inescapable part of the special needs journey. Hopefully it is more the exception than the rule, as the majority of folks who interact with our children do care and are well-intended. In the meantime, we continue to tell our present Transportation Dream Team that their daily role is greatly appreciated. Peace of mind is priceless, and so is the giving of compliments and small gifts at Christmas and the end of the school year to the folks who provide such an important service for our children. They are and always will be integral members of Team Brian.

Until next time…thanks for reading! 🙂

Brian’s got that something extra, genetically speaking. Each of his cells has an extra copy of Chromosome 21, aka Down syndrome ( DS), or Trisomy 21, and this has and always will effect the way Brian learns, communicates, and experiences the world. Brian also has autism, and although there is not a genetic difference correlated with it (at least for now), autism has also effected Brian in the previously aforementioned ways. Children with DS and autism (dual diagnosis) are unique and very different than their peers with DS alone, or children with just autism, particularly as it pertains to speech (or lack there of), socialization, behavior, and academics. Often children with the dual dignosis struggle more in these areas: it’s like another layer of challenges to work through, but thankfully, teaching methods like ABA (Applied Behavioral Analysis) break down academic skills, activities of daily living, and behavioral skills into simple steps that can be taught and learned through positive reinforcement. All of these skills  can be recorded, measured, and analyzed for progress over time, like it’s done at Brian’s ABA school. We also have a home ABA program through our medical insurance, where therapists come after school for a couple of hours to reinforce academic and activities of daily living skills. All of the above is just one division of “Team Brian” that is involved in The Daily Operations and will be until Brian finishes his education at 21 years old. It’s hard to believe that Brian is now more than halfway done with his formal education. It just seems like yesterday when he started early intervention at his center-based program at 16 months old…Twenty one will arrive too quickly and the future for Brian and other post-graduate special needs students is sometimes scary to contemplate. Fortunately , post-graduate programs are emerging  and the resources / demand for such programs are both huge and extremely necessary.

Brian’s got that something extra, medically speaking as well.  Our first introduction to The Medical Division of Team Brian, was when Brian was diagnosed with a hole in his heart in-utero at 4 months old. Bedrest followed when I was 7 months pregnant  (in the hospital), then Brian was born one month later at 36 weeks. Open heart surgery took place when Brian was 3 months old. It was one of the most scariest and difficult, yet victorious of times, as Brian emerged stronger than before. His strong spirit would serve him well going forward and still does today.
Over the next 12+ plus years, Brian’s additional  medical procedures have included an orchiopexy, ear tubes, and eye surgery. Brian has also worn various types of orthotics since age 2, eye glasses, and more recently, a back brace for scoliosis. He sees his local pediatrician and 7 other physician specialists, plus the dentist. I’m glad that my 8 years of previous pharmaceutical sales experience has come in handy when I speak with Brian’s doctors today. At least I have some basic background knowledge on disease states and treatments. I have also  learned to do my research and write down my questions, sometimes even recording the more extended specialist visits. It really does take a huge medical village to keep our children healthy!  We are especially grateful for those doctors and their staff who really “get” our kids, listen, have compassion, and offer effective solutions. Brian’s medical experiences have been overall very positive.

Finally, Brian’s got that something extra in his personality and spirit that makes him so special and unique, just like each of one of us.  He loves to give and receive “death grip” hugs. His smile is trademark and causes the world to smile with him. He loves to giggle with a hearty belly laugh.  He is funny, trusting, pure, and kind. He is a handful, but is so worth every effort. He is our hero and deserves a purple heart for his acts of courage with every challenge that he faces. He never gives up and encourages us to do the same.  He lives life fully in the moment, a lesson that I need to keep learning. Brian’s journey is not an easy one, but is filled with hope and blessings in the people, places, and things that we have encountered along the way with him,  all  because of that ” something extra”. He’s  definitely a keeper! 🙂

Until next time…..thanks for reading!

Most people have a love/hate relationship with hospitals. We hate to be admitted into one, but love how we can regain good health from one as a result of treatment. They can be overwhelming, intimidating places, especially the Emergency Room (ER). Unfortunately, I have been in the ER more often than I care to remember, especially over the past 7 years. My colon cancer was diagnosed there. I was also there twice with my Dad due to complications from his lung cancer treatment a few years ago. Mom was diagnosed with pneumonia in the ER last Fall. And Brian has been admitted twice in the ER over the past 8 months. With all of this experience, the high anxiety and uncertainty of the outcome still remains each and every time there is an admission. Yesterday morning was no exception, when I noticed blood in Brian’s urine and knew I had to bring him to the ER at our local hospital, St. Barnabas. I knew what they were going to have to do: blood labs and a renal ultrasound, and it would have to be done under some type of sedation. I also knew that I would have to pack a “bag of tricks”, which would include: snacks, an i-Pad, and i-Pod with several tunes. Being prepared is mandatory in this situation for both Brian’s sake and my own. Questions for doctor- check! Clippers, manicure scissors and comb to perform grooming activities while Brian is under sedation- check!! Blood labs from ER doctor and combining them with other physician lab requests both locally and out of state while under sedation – mandatory!! I was even able to get a urine sample from Brian and bring it to the ER because I knew they would need one. Our bag was packed and we were ready to go! Ten minutes later we arrived at our “second home”, all the while I was praying

for Brian, the hospital staff, and myself, for a medical resolution and courage, because these situations call for such measures. I sure wish Jim had been with me, but he was in Dallas on business. Emergencies have that funny way of coming up without warning and have no regard for business trips.

Brian was remarkable during the transition out of the car and into the ER, with the exception of just the first few seconds. He eventually walked in like a brave soldier going into battle and within minutes we were admitted into a treatment room. Our nurse, Tara, couldn’t have been nicer, a perfect pediatric nurse, so engaging with Brian and compassionate!
The ER physician was also very affable, listening carefully to what had happened, then  ordered the blood labs and renal ultrasound. I stressed  the need for Versed, a drug that provides concious sedation, that would allow the staff to draw Brian’s blood and do the ultrasound without issue. Fortunately, Brian had had Versed previously. I have also had the great fortune of having had Versed myself when my port was inserted for chemo. They really should call it “Sublime” or “Devine”, because that is EXACTLY what this stuff is! The world is wonderful, funny, and you really don’t care about anything at all under its influence. Since this was Brian’s third go around with Versed, I knew he would definitely be very relaxed for his procedures.

Brian was so relaxed, that I was able to trim his finger and toe nails, AND a little bit of his hair, after the blood draw and ultrasound. What a difference and a dream to have an anxiety-free experience!  The nurses drew the blood with Karen Carpenter singing on the i-pod I brought. Someone suggested a scented candle, lol, the hospital ER just doesn’t get any better than this! But it actually did, with the arrival of Caitlin, a Child Life Specialist, who is part of the Special Needs Ambassador Program (SNAP) in the Pediatric Emergency Room at St. Barnabas and pictured above with Brian. What an angel!

We had the great pleasure of meeting Caitlin the last time Brian was in the ER.  She was so calm, collected, and wonderful with him!  Caitlin had her own iPad of videos/ games to share with Brian. She brought us drinks and snacks, and sat with Brian while I took a brief break. Caitlin also assisted the nurses and myself in holding Brian steady when his blood draws were done. She even took Brian on a stretcher to the radiology department and remained with us until the ultrasound was completed, then wheeled Brian back to his room. Talk about first class service! Most importantly, Caitlin was compassionate, understanding,  and a steady, reliable presence throughout our entire time in the ER. She is the perfect advocate and liason between patients and the medical staff. What a comfort and blessing it was to have Caitlin there yesterday, especially since Jim could not be. Her presence clearly offers reassurance to families that they are not alone in such a stressful circumstance and their physical and emotional needs will be taken care of every step of the way. I believe that is exactly what angels do and they do exist in the ER!

Until we meet again..thanks for reading!  🙂

PS- Brian’s renal ultrasound was unremarkable,  but the red and white blood cell counts were high, so he is currently being treated for a urinary tract infection. We are still awaiting the urine culture results…

Stupid Cancer, The Unwelcome Visitor who will effect approximately 75% of families in their lifetime.   Thankfully, treatments continue to evolve and improve the outcomes for those who are afflicted. I am forever grateful for being one of those really lucky Medical Miracles and am reminded of this fact every time I look at the above  picture, taken 7 weeks after my last chemo infusion on Mother’s Day 2010. I realize this ending is not the same for everyone who goes through treatment. It’s horrible and totally unfair.

I know of 7 people currently going through cancer  treatment, one of whom I learned about today, is a Mom who has a daughter with special needs. And this is her SECOND battle with cancer. It’s unfathomable and unquestionably the most cruel of blows. My heart breaks for this wonderful lady who is truly so courageous and whose main concern is only for her beloved daughter. I pray for her healing, along with our other friends, and for a cure for cancer in our lifetime.  I ask that you please do the same in honor of all current Cancer Warriors and Survivors. Finally, hug your family and friends a little tighter, and tell them you love them daily, for tomorrow is not promised for any of us….

Until we meet again.. xoxo xox