Ari In A Nutshell

It appears that it has been a very long time since I gave a real update on Ari.  I can tell, because whenever I have posted a photo or a video featuring her, friends and followers seem to be surprised at her progress.  There is so much to say, so it’s hard to know where to start.

I’ll start with the photos.  I took these pictures about a week ago when Ari and I went to Cardon’s Children’s Medical Center for an elective Botox procedure on her right arm and hand.  Her right arm has always been really tight and weak, but it has gotten worse over time, so I decided to give her a poor arm a short break (3-5 months) from the constant tightness and cramping by getting Botox injections in her right bicep, forearm, and thumb.  It is also our chance to stretch her without causing her pain and build strength in her arm before the tightness regains control.  It worked, and while she needs to work a lot harder to use her right hand as a helper, such as with holding on to grab bars in the restroom, it is much looser and more comfortable for her.  She did not have any complications in the hospital, and she actually really enjoyed her short three hour visit.  She became a fast favorite of her nurses and doctors.  She listened to Frozen songs on their paging devices and both fell asleep and awoke from anesthesia with a smile.

Ari has not had any other hospitalizations, and we are very thankful for that.  That isn’t to say that she has not had seizures though.  No, it isn’t saying that at all.  Ari’s seizures have noticeably increased in frequency.  At one point, Ari was only having one seizure per year, but so far, this year she has already had six or seven.  The past two seizures have both been within nineteen days of each other.  The most recent one was this afternoon.  While we still don’t know for sure any triggers, the seizures have gotten more predictable.  Lately, they seem to occur when she is asleep.  They used to happen at any random hour of the day, but recently that hasn’t been the case.  This isn’t good.  She usually lets out some small cry for help right before she starts seizing.  This has alerted me in another room once, and every other time, it has awoken Bella.  This is good.  Sometimes, Jake and I think that she has seizures more often when she’s hot.  They have historically come on more during the summer months or when she has a fever.  Her room here, despite the giant fan overhead and the $705 electric bill this month, is still warm.  I had our A/C guy look at the ducting, and he says that the route to that room is pretty hopeless, so I’m having him reroute that piece.  But honestly, we’re still just shooting in the dark. 

Ari’s gross motor progress hasn’t been great, despite her motivation to take more steps in her gait trainer and her Upsee.  Her legs are much weaker than prior to her surgery in 2013, and even with all her efforts and many hours in physical therapy, we have not been able to get back what strength she had before.  She always is her strongest during and right after her summer Conductive Ed program with Gaitway.  I don’t know where she would be without her summer Conductive Ed.  But the fact of the matter is, she is much heavier now than she was even a few years ago and as much as I find her 52 lbs. difficult to carry around, she is having to deal with that much more than I.  Weaker legs + a heavier body don’t make for a great combo… especially when you’re seven years old and only want to play.  I mean, she will work for Frozen.  Thank goodness for Frozen.

Her left hip is bad now too.  I swear it’s because of the Rhizotomy, and I can’t be told otherwise.  Her hip had very nominal dysplasia in 2013, but in 2014, she has 50% dysplasia on the left.  We have a hip surgery in her future, and it’s only a matter of time, but I’m trying to postpone it until she’s more or less done growing.  This will reduce the chances of her having to repeat it due to changes from growth.  No one wants hip surgery.  Let alone twice.  There will be weeping and gnashing of teeth on the day that we are told that she needs it right away.

That basically covers her physical health.  Now, academically and cognitively – that is where we’re making the big gains.  I don’t even know where to start on this topic.  Ari is reading long lists of sight words.  On a list of 40 sight words, she can pick the word I say from a field of 6 with about 90% accuracy.  I had to buy more storage on my iPhone to accommodate all the videos (proof) I have of her doing this.  She can count to ten and count items.  She is learning to verbally say so many more words.  She is motivated to speak so much more every year that she is in school (fully mainstreamed) than she ever was at home.  She knows all of her letters, upper and lower case and the sounds they make.  She sounds out words verbally when she is reading a word she doesn’t have memorized.  She got an 80% on her last AR reading comprehension test (modified to 2 response multiple choice).  She can handwrite her first and last name all by herself (with light support on her wrist to keep it on the table).  With the same minimal support, she has hand copied a complete sentence on her own without anyone assisting her or telling her what to write.  She has recently begun to take off with using her new iPad Touch Chat augmentative communication device to speak.  She actually initiates conversations on it and replies to questions using it without needing to be prompted.  She is beginning to type words and sentences on her iPad keyboard.  As you might guess, I am thrilled with her progress!  I feel like I am getting to know her a little more all the time as her thoughts are coming out through her newfound language.  Who knew she loved dried cranberries so much?  She is tickled that she can express that want to me and for it to be reciprocated with her favorite snack!

   

With all of Ari’s new gains and continued struggles and years passed, a mother’s heart will still never lose the hope that she will one day see a miracle.  And while everyday miracles are beautiful and celebrated in our world, I’m talking a true blow-your-mind miracle.  The kind that makes headlines and restores people’s faith in God.  And I know that’s not really the right thing to say.  The right thing to say is that I wouldn’t change a thing about Ari even if I could.  But authenticity really pulls rank in my book, and I hardly ever say the right thing anyway.  I say the honest thing.  But I’m just like every other loving parent that ever lived.  I don’t ask for any more or any less.  I want my child to have every opportunity, every good experience, every joyful or meaningful moment that the human existence can offer.  And if not all that, then I at least want her to have a fair shot at it.  She wants that too.  Trust me, yes she does.  But either way, we will be happy.  As long as she is here with us and she still smiles her gorgeous smile at me every day and tells me “I luv-a Mom”, my heart will be full and filled with gratitude at the miracle that she already is.

Conductive Education

When it came to Ari’s surgery, I dreaded the rehab almost as much as I dreaded the surgery.  I signed Ari up for Conductive Education summer camp, which was Monday-Friday for three hours every day for four weeks of our summer… in downtown Phoenix.  The commute, leaving Gabe and Bella with their nanny and missing their summer vacation, having Liam out and about during his nap time, trying to get Ari to cooperate with PT for 15 hours and car rides for at least 8 hours a week… were all reasons that I just could not get excited about it.  Well, all those things still happened, but guess what?  It was worth it!  It was so worth the inconvenience to see Ari go from being a floppy noodle post-op to retain nearly 90% of her pre-op strength.  But this time, it’s real strength and not just her tone.  She’s using her real muscles instead of her spasticity, and she is looking good!

At this point in time, Ari has regained the ability to sit independently in a chair or on the toilet without falling.  She has also regained the ability to stand for short periods with support using her hands on a bar to hold her up.  She is trying oh so hard to take steps on her own.  The right leg is still pretty obstinate, but the left leg is doing so much to try and compensate for it.  She is using her right hand much more now than she ever was before.  Our amazing conductor, Bea, stressed the importance of Ari’s right hand functionality, stating how it was essential to her learning to walk using a walker.  She used reminders, elbow splints, handles at the table, toys, music, and anything else she could to get Ari in the habit of incorporating her right hand into the daily routine.  Ari seemed tickled by all the attention to her oft neglected “rightie”. 

If I were talking to a newbie, I would describe Conductive Ed as therapy boot camp.  While its emphasis is gross motor, Ari also received OT, speech, and music therapies informally throughout the program.  I love the equipment they use too… simple, ingenious pieces created to maximize function and benefit for the child without being cumbersome.  They are also extremely affordable (I bought this therapy ladder for $35 for home!), convenient, and yes aesthetically pleasing!  I  don’t think I’m alone when I say that I am so tired of all the equipment resembling torture devises piling up in my living room.  Not so welcoming.  Now, this ladder is very discreet and not intimidating at all… it almost looks like furniture.  I am so tired of feeling like, as a mom of a child with special needs, aesthetics should not matter at all to me.  They still do!  Most importantly, however, is that this ladder (and everything else) is so easy to use that I actually pull it out every day instead of once in a great while, which means Ari is improving lots because of it.

See this handle?  It helps Ari sit up straight and use her right hand/arm.  It only works with one of these slatted Conductive Ed tables (unless I drill two holes in my kitchen table), so it looks like I’ll be buying a table too pretty soon (for only $150 for a 6 ft table, why wouldn’t I?).

We also made some great new friends and connections while we were there.  It is a sheer joy to talk with other moms living the same life.  As far away as we may live, and as different as we may be in other ways, there is definitely an indescribable bond between us that is immediate and lasting.  We share stories, ask questions, compare doctor’s notes, talk about new health findings, clinical trials, recent medical publications, great physicians, up-and-coming physicians, nightmarish physicians (cough cough Dr. Zozobrado), schools, IEP’s, caregivers, vehicle modifications, diet modifications, kitchen remodels and everything in between.  We sit there together, trying to be secretary and executive assistant for our children (on the phone like mad scheduling appointments, coordinating everything and everyone in our child’s life from A to Z), but we get sucked into the very interesting conversation great feeling of “not alone” and we spent the hours talking/learning/healing with each other.

And while Conductive Ed may be over for now, we will be going back next summer.  In the meantime, I will be taking Ari downtown (even further) to CRS Rehab for PT for one hour, three days a week, after school (read: there and back in rush hour with four exhausted small children).  This, we’ve already been doing for a couple weeks, and it isn’t fun.  In fact, it’s work… necessary work, but work nonetheless for everyone involved.  There is no real joy in this, save it be for the knowledge that I am doing every thing I can to help my child recover physically from her surgery and reach her maximum physical potential.  I also know that after just a few more weeks of this schedule, it will (hopefully) feel like second nature.  I have always said that humans are so adaptable.  I’ve seen this in my life and as a counselor to others.  When necessity demands it, people can truly perform under some crazy conditions.  At least, that’s what I keep telling myself :).

Ari’s Surgery Update

Even though I am about a month behind on my blog, I know I needed to give an update on Ariana. 

on Monday, June 3 at 7 AM, we said goodbye to Gabe and Bella, who were in good hands with both of the grandmas and took Ari in to Cardon’s Children’s Medical Center for her Selective Dorsal Rhizotomy.  Her surgery was originally scheduled for 7:30 AM, but because Ari’s doctor had just found out about her clotting disorders, he decided to postpone the surgery till 10 AM, just to make sure that we had all the necessary blood work prior to starting. 

Backstory:  Two days before surgery, I had a chat with the doc about Ari’s horrendous veins just so he could be aware of it during surgery.  He tried to reassure me by telling me that they’d put in a Picc line (central arterial line) that would last the entire hospital stay, so they wouldn’t have to mess with her scrawny veins.  Knowing that Ari’s blood clotting disorders (Factor V Leiden and MTHFR) make her ineligible for a Picc line because of the increased risk of developing a clot, I realized at that time that this was the first he’d heard of Ari’s clotting disorders.

Surgery day rolled around and it turned out that he already had most of the correct blood tests already run off and her levels were all within normal ranges.  This was a big relief, because her clotting disorders have the potential to complicate everything.  After one failed attempt at drawing more labs, she was given a reprieve.  Happy mommy.  So, we just decorated her “sleepy mask” with stickers and scented it with candy flavoring brought in by Child Life and played on the iPad.  Marci, Jake, Liam, and I all stayed with her until she left for the OR.  Jake and I (and almost everyone we know) were very nervous.  I’m not so sure what we were nervous about most – whether it was the idea of making permanent and maybe regressive changes, of the inevitable pain she’d experience, of the possibility of something more serious occurring, like a blood clot or a seizure, or if it was just the thought of our baby being injured and altered in that way.  But as nervous as I felt, I also felt surprised at my relative calm compared to what I expected to be feeling.  To be honest, I was expecting to be a wreck that morning, and I wasn’t.  I really believe that I was calmed by the prayer and supportive thoughts and energy coming our way.  It was overwhelming the love and support we felt that day, and I couldn’t have been more grateful.  I did not feel alone.

At 10 AM, it was time for her to go in.  She was so distracted by the iPad that she didn’t have even a moment’s hesitation.  I knew that with Dr. Moss she was in the best hands.  Dr. Moss also mentioned (twice) that her anesthesiologist was excellent.  I felt a little relief at hearing this.

The OR nurse called me three times during surgery; each time to update me that things were going very well.  I loved that they did this.  I felt that they really did have a heart for the parents, and it was just a kind gesture.  During the surgery, Marci, Liam and I waited in an empty room near the OR.  We sat in the dark, tried to get Liam to take a nap on a play mat on the floor by pretending to sleep beside him, chatted nervously, ate in shifts, and texted updates… anything to pass the time. 

At 2 PM, Dr. Moss came into the room and informed us that the surgery went very well and “couldn’t have gone better.”  I don’t think he could have said anything nicer to hear at that time.  He told us that Ari was in recovery and that she would be in the ICU in fifteen minutes.  He told us that her pain level would be very severe, but that he would give her all he could to manage it.  He said he wanted to keep her “snowed” for the first 48 hours, which sounded good to me.  It’s like a breath of fresh air when I don’t have to advocate for my daughter to get what she needs.  Dr. Moss was there for Ari, and I couldn’t have asked for a better player for Ari’s team than him.

At 2:15 PM, Ari was in a world of pain.  She was hurting so badly that she decided to hold her breath for extended periods and her oxygenation levels would plummet.  This gave her nurses just enough incentive to bump her paid meds from an “as needed” basis to a semi-scheduled basis.  Let me just say that there is nothing harder in this world than witnessing your child suffering (the second worst being the anticipation of your child’s suffering).  By the end of the day, however, Ari’s pain was under control with a strong cocktail of Morphine, Valium, Tramadol, and Tylenol.  Her nausea and vomiting were out of control, however.  She was throwing up about every 20 minutes.  She was throwing up way beyond the point when there shouldn’t have been anything left to throw up.  After all, she hadn’t been allowed to take anything by mouth since the night before.  The constant vomiting only stressed her out more and added to her pain and discomfort.  The Zofran they had been giving her for anti-nausea was obviously not working.  I knew that this had to change by the next day in order to promote healing. 

Tuesday, 6/4, Ari’s anti-nausea med was switched from Zofran to Phenegran.  Finally, she was able to eat and drink and keep it down.  I couldn’t believe how brave Ari was.  Despite feeling pain, she even managed a small smile when I asked her if she wanted applesauce (her first food post-surgery).  She was on the road to recovery.  Ari basically played the iPad whenever she wasn’t asleep or eating.  She was so excited about eating!  She ate nearly a full adult entrée at every mealtime.  I also did my best to entertain this girl, from singing Disney soundtrack songs, to being ridiculously silly.  I did anything for even the slightest hint of a smile.  While I spent my days with Ari, Jake came and stayed with her at night, so I could be home for Liam.  It worked out for us, thanks to the great help of Grammy and Nana, who were there to help with Gabe and Bella while we were away.

By the end of the day on Tuesday (6/4), all of Ari’s IVs had infiltrated, or she had ripped them out on her own (all three!).  That’s right, three beautiful IVs, placed while under anesthesia, went bad within 32 hours.  Typical Ari.  Fortunately for everyone, the PICU doc and Dr. Moss agreed that she didn’t need them anymore since she had been tolerating food, liquids, and meds all day long by mouth.  Because the meds were no longer by IV, they switched her to Loritab (Hydrocodone and Tylenol) and Ibuprofen for pain and Valium for muscle spasms.  This girl is so brave and so tough and just simply amazing.  She musters up a smile when I’m sure most of us couldn’t manage it.

Ari began Physical Therapy while in the hospital.  She wasn’t up for much, but she got started moving her new legs in different ways and practicing sitting all over again.  We have papers with exercises to practice at home, and scheduled visits 3-5 days per week to downtown Phoenix for PT.  Since being out of the hospital, we already have four PT sessions under our belt plus her hours with me.  Ari’s lower limbs are completely different since the surgery – it’s like she’s a different kid in her lower body.  I can really see the benefit of doing the surgery at a younger age as opposed to waiting until she was older.  The effects are tremendous.  She is so excited by her new flexibility and bendiness.  The tone is reduced by about 2/3, which stands to reason because Dr. Moss said he cut approximately 2/3 of the sensory nerve fibers.  While it is definitely an improvement, it came with a cost that we expecting to see.  Ari can no longer bear weight on her legs to assist with transfers, dressing, or toileting.  She has more difficulty sitting up unassisted, and she can no longer balance on the toilet without holding our hand.  These abilities are something I know she will regain with time and rigorous rehab.  She has to, and I don’t doubt that she will.  It will be like training for a marathon, but we will get there.

 

6/6:  We celebrated Liam’s 1st birthday in the hospital!  I felt so guilty that it wasn’t a big themed party at the park with all the trimmings like the other parties my kids have enjoyed, but he didn’t seem to mind :).  In fact, we had quite a good little turnout (totally by accident), and he seemed quite pleased with his store-bought cupcake and balloon.  More photos on this to come in a later post.

While in the hospital, Ari was visited by many friends and family members.  She was not her usual energetic, social self for most of the visits, due to the medicines she was on combined with the pain and exhaustion that goes along with such a major ordeal, but she still made it clear to us that she was happy to see some of her favorite familiar faces.  She was showered with gifts and balloons and treats in the hospital; while at home, we were so blessed to be the grateful beneficiaries of delicious meals cooked by amazing friends.  This would have been an entirely different kind of experience, were it not for the help and support of our friends and family.  To this day, Ari continues to receive visitors to the house, bearing cut fruit (so I don’t need to cut it!) and candied apples and boxes of Play Dough, while my bestie swings by to drop off Gabe and Bella after a day of swimming and lunch.  We are so blessed!

On the fifth day of our hospital stay, Ari was released to go home.  This day also marked another huge milestone, which is the purchase of our new house (surprise! – Jake surprised me too, somewhat).  We are staying local and staying at Carlson Elementary, but moving to a new one-story home in a few months.  More on that later.

6/14:  Right now, Ari is napping.  She is all off schedule from the hospital (hospitals will do that to you), and she has trouble falling asleep at night but wants to take extra long naps during the day.  She has not had any real pain medication (only Ibuprofen) in almost two days, and is doing well.  She has started trying to get out of bed on her own and crawl all over the floor, just like she did before.  Ari is back to using the toilet, and gratefully, it is safe to say that her bowel and bladder control have remained intact despite the surgery.  She is once again eating in her regular chair at the table, instead of reclined on the couch.  She still can’t get her incision wet, so baths and hair washing are tricky.  We got her a bath chair to raise her over the water and we wash her hair in the kitchen sink while she lies on the granite countertop.  I learned this valuable trick from my friend, Lori Lakes, who’s daughter has CP like Ari.  We are feeling content right now… grateful and content.  This is an upswing (relative upswing) from a more angst-filled winter and spring.  The things that are new and improvements, we are feeling happy for.  The things that are new but not so great, we are learning and growing accustomed to.

Here are Ari’s pre- and post-surgery car pics.  I thought for sure that her post-surgery car pic would not be so smiley, but luckily, I was wrong!  Notice her leg spacing in the before photo.  She could crack nuts between her knees!  Her leg are so much more relaxed in the after photo.  What an immediate and definite difference!

Before:                                                                         After:

6/17 UPDATE:  Marci and I took Ari back to Cardon’s Children’s Hospital late last night after we noticed that the area around the incision on her back was getting reddish and very swollen.  Obviously, our worst fear and the thing that immediately came to mind was infection.  I am not an alarmist when it comes to Ari, because I’d be in the hospital all the time if I was, and I already feel like we’re there quite enough.  I called Dr. Moss’s service before I was ready to commit to taking her, but I didn’t get to speak to anyone.  Then I called her pediatrician, Dr. Matsumoto’s service, and spoke with the on-call nurse, who just happens to have a foster daughter with CP who had a spine infection after her surgery.  Hearing that was enough to get me in the doors of the ED before another hour had gone by.  Fortunately, the ED doctor along with Dr. Moss’s partner, Dr. Ruzicka, came to the eventual conclusion that Ari was having a localized reaction to the internal stitches in her back.  They cleaned her incision and rebandaged it with a sterile dressing, gave her an antibiotic injection, and sent her home on oral antibiotics.  She was back in her own bed by 3 AM today.  Although I am beyond exhausted and really a hot mess… like REALLY, I am also so relieved and a little giddy that we seemed to have dodged a bullet and things are on the right track once again.

We ask for your continued prayers for our endurance in this long journey, for Ari to quickly gain strength and build muscles, and for her to make it to her full physical potential.  In PT, Ari is already impressing her therapists.  The therapists all say that she is simply “amazing.”  Her pain tolerance, her unending happiness and smiles, and her ability to perform in PT are beyond what they or even I could have asked for.    Ari began Conductive Education today, which is an approach to physical therapy that is premised upon repetition of muscle movements to promote learning and increased functionality.  Ari has CE Monday-Friday for four weeks from 9 AM-12 PM.  After her first session, she slept the entire way home from downtown Phoenix (45 minutes) in the car.  I’m looking forward to seeing her make great gains!