The State of the Lewis

LJ has been much more interested in food lately.  He isn't really eating, per se, but he's gumming and sucking on a wide variety of things.  Lew has shown interest in Tostito's Hint of Lime Chips, Gerber Graduate's Apple Wagon Wheels, fig newtons, Milano cookies, pretzel crisps dipped in hummus, clementines, chocolate pudding, almond butter, pizza, french fries, dried strawberries and bananas, yogurt, goat cheese crumbles, cream cheese, marshmallows, Fontina cheese cubes, bread of any kind, frosted cookies, asparagus, sweet potatoes and even sushi (and our fair share of Cheerios).  Food picnics have been so much more laid back and productive (and very slobbery and messy :). He's also been sucking his thumb and eating his toes.

The botox injections have had mixed results. Noodles is now opening his right hand when you flex his wrist.  That pretty much rules out casting at this time. The splint is staying on for longer and longer periods of time...not sure if that's just because Noodles is resigned to it by now.  Another highlight this week: Kool-Aid play dough. We made orange-flavored play dough and used this activity as a therapy session- his right shoulder is looser now due to the botox and we were able to help him raise his arm and pour ingredients into the mixing bowl.  Our OT is also going to make LJ a weight bearing splint this coming Monday. It will hold his right hand open to assist with weight bearing- both stretching and strengthening the right hand muscles.


LJ had his preschool evaluation with the school developmental team for next year.  He completely surprised everyone when he was able to answers questions with his iPad and Proloquo2Go program.  Nothing too complicated but nonetheless when the team asked him to identify the picture of Daddy he answered with the picture of Josh.  He is accurately isolating his pointer finger and pointing out people like Nate, Tango and Emily.


Nate is doing well, like any five-year old, in turns endearing and exasperating. At times ignoring Josh and I; he goes ahead choosing what he will.  Though this morning was delicious.  He held Lewis up in a tripod sitting position, in the middle of the kitchen, making sure he didn't buck backward, and entertained him while I prepared the morning coffee and the boys' breakfast.  He was so proud of himself that his baby brother didn't cry on his watch and also that he was strong enough to handle LJ.

Tango is holding his own.  We are giving him IV fluids at home every other day and administering about 4 medications to help keep his creatinine levels under control.  He is anemic and still shakes, but his appetite has returned and for the most part he is behaving like his old, excitable self.  Hopefully this will last awhile. 

PQ2GO in the News

Empowerment...an Incredible Speaker

Some Shaving Cream...Hold the Mess

Things just keep on getting busier around here.  We might have to get Noodles right wrist and right hand casted. Serial casting has been found to provide patients with effective stretching when other methods do not post-botox.  You can read a Kennedy Krieger Institute article about it here. The botox doesn't seem to have helped- it may have made things worse. Noodles is really guarding his right arm and he is clenching his fist tighter than before. The OT at Children's made him a "resting splint" to wear when he is relaxing or sleeping. He didn't nap today as he was too busy working his way out of the splint!

Things should have opened up and we should have been seeing positive results after day 4; Its a mixed bag really.  The botox has at least helped his leg.  He has been enjoying practicing in his walker so much so that he even chose that activity over playing in a giant multi-purpose playroom at school on Tuesday.

Here's a photo of LJ at OT with the Children's therapist this week.  He's playing with shaving cream on a mirror (note how fisted the right hand still is). Yeah, he got messy. But at least he smelled nice and clean! We've increased all therapies in an effort to help maximize his progress. Twice a week OT, PT, ST, feeding therapy and aqua therapy (which Emily, who is kick-a$$, did all on her own today since I was over-committed).  Plus preschool, Hungry Hippos and Music Therapy and oh yeah, doggy fluid treatments involving needles and IV's (its TRUE love).  Four hours a day of therapy for the little nugget is too much. Fun fun fun! Does anyone wanna have group therapy with us soon?

My Heart Is Pinned to My Sleeve

I'm a romantic at heart.  I also wear my heart on my sleeve.  I'm a quick study.  It's easy to recognize the mood I'm in but I've learned something.  None of this matters.  I'm struck by the revelation that "I'm the lucky one." I grew up healthy and able-bodied.  I've traveled and made many friends along the way.  I gave birth to two sons.  These boys can't wait until I wake up each morning and they can press their noses to my neck and hug me. I've loved others and live for the delight of laughter and humility.  I'm smart and kind and loving. I've gotten cranky and pouted. I have heard my heart singing. I have laughed until I wet my pants. I love to be playful and optimistic. I've lived in the madness of hope and wonder. I've been stressed waiting for test results and I sit and watch and notice things...about my worry..I've taken chances and lost and won some.   Brenda Solomon (co-founder of a respite house here in VA) said about it being a crisis with no end in sight. It is one thing to deal with a crisis that you KNOW is only temporary but it is a completely different thing when there is NO light at the end of the tunnel because this is your life. I've learned to let go and come to terms with the journey of life. I'm learning.

My heart and world have been expanded beyond anything I ever thought or imagined.  Hope you are spending time with those you care about!

All Set

We're all set.  We had a long day but everyone is home and resting comfortably! Here's Emily with her "other boyfriend".  LJ did really well- he didn't need any versed (sedative) when he woke up.  It's too soon to tell how it is working but we get to start stretching him tomorrow. Thanks for all the well wishes.

Botox Day

We are trying to stay calm and not let worry get the best of us.  Botox. Anesthesia. Shots. LJ is scheduled for botox injections tomororw morning in his right pectoralis major, right biceps, right flexor carpi ulnaris, right flexor digitorum superficialis, right adductor pollicis brevis and right gastrocenemius muscles.  In layman's terms, that is a whole lot of botulism poison being shot into my son's pecs, biceps, muscles that bend the fingers, wrist, thumb and calf muscles. We found out while we were at water therapy today this one of his friends is also having this procedure done by the same surgeon right after LJ's tomorrow!  Waiting is the hardest part (oh yea...and also not being able to feed him anything after midnight tonight), but at least we we'll have a friend there to while away the time.

For those of you that never realized, botox has more noble causes then reducing wrinkle lines and de-sweating armpit glands.  It's used for cerebral palsy as well.  There are varying degrees of tone with cerebral palsy, commonly referred to as hypertonia and hypotonia. I heard Noodles' referred to as dystonia for the first time last week. Hypertonia means lots of extension and stiffening of the arms and legs (spasticity is usually associated with this).  Hypotonia means really weak, almost to the point of being floppy and not being able to hold ones head up.  Dystonia means that when your child focuses real hard on x task, those muscles go into extension and it takes a while for the child to break out of it.  Heartbreaking really.... as I have watched LJ become more easily frustrated these days when he is not able to complete a task or get his wants, needs and desires across because of his motor and communication difficulties.

Tone never fully goes away.  But we're hopeful parents wishing that this intervention can bring a little relief to our brave lil guy (and avoid future surgery or medication). Thankfully he won't remember the procedure!

Tango

It's kidney failure.  Tango is comfortably resting at the animal hospital right now.  We found out on Tuesday that he has kidney failure.  We knew something wasn't right when he was trembling, vomiting and had no appetite. So we called the vet, who came to our house, and she drew up the lab work and hauled it off.  She called the next day and came to the house again, this time bringing an IV bag of subcutaneous fluids, vitamin B drops and Pepcid. We gave Tango extra cuddles and let him sleep on our bed that night only to be awakened two or three times when he got sick.  We don't know what the cause is yet, its possible that its due to an infectious agent or a toxin and we're hopeful its one of those.  Anything else and it will be fatal.  Feeling sad right now.  I know I know.  It's just a dog thank goodness. I cannot help but worry.  I am heartbroken at the thought that my kids might not have their fierce protector for much longer or their goofy, sidekick to be a part of their life. And it felt so empty today when the doorbell rang and Tango wasn't there to bark at the visitor.

Update: Tango came home from the hospital this weekend!  The blood tests all came back and unfortunately it is chronic kidney failure. His blood levels are all elevated, the most tell-tale sign being the creatinine and blood urea nitrogen levels.  We have a crude dialysis thingy set up- I swear I should get an honorary nursing degree.  I learned how to insert the needle and get him some much needed fluids flowing from the IV bag which is also loaded with vitamin B to help replenish what he has lost from the renal failure. Along with fluids, he is eating three small meals a day of prescription dog food.  We are administering about 6 different medications throughout the day to help with the anemia and his nausea and we will have a follow-up blood test repeated on Thursday.  LJ's wonderful caregiver, Emily, spoiled him rotten today.  I returned home after LJ's therapy at Children's today to find that she bathed him and warmed him up in this sweater get up.

I think he looks cozy, don't you?

Wholeness

"Whatever wholeness we achieve requires enormous work, which is the effort of life;

and that work is never complete. "

----- Gary Saul Morson Prosaics: An Approach to the humanities