Monday, July 8, 2013

Go ahead, make my day!

Last month, I was frantically running around getting stuff done for the end of the school year, and remember taking Jennah along on one of my errands. I remember parking in the disabled parking spot at Starbucks and began the process of unloading Jennah and her gear. I was putting together the pieces of her wheelchair at the back of the van when I heard little footsteps approaching from across the street. I looked up to see a little girl, perhaps 3 years old, crossing the street with her very pregnant mother. She pointed at Jennah’s chair and said, “look, there’s a baby coming out of that van!”

Her mom said, “I don’t think that’s a baby stroller, but do you want to go say hi?” The mom looked up at me inquiringly, to which I enthusiastically nodded in approval.

They came over and watched me unload Jennah. I think the little girl was a bit surprised to see a big 5-year old girl being hauled out and strapped into a chair, but her mom did a wonderful job of easing any of her concerns by chatting about Jennah’s hair (people love J’s hair!), her orthotics, tubing, and special chair. The little girl reached out and held Jennah’s hand, and with permission, touched her orthotics, which has butterflies printed on them. It was obvious that I was in a rush, so I thanked the mom for introducing her daughter to Jennah and we parted. As I walked away, I realized I had a huge smile on my face and that the brief encounter had made my day. It may have been an insignificant “hello” for the mom and little girl, but for me, I think still back on it and smile.

Friday, June 28, 2013

Girl of steel … no more!

After my last post, where I had a bit of a panic attack, I was flooded with words of wisdom and support. Thank you, friends.

WP_001101We went in for a pre-op visit the day before the surgery. It was a quick visit, but I was reassured that the procedure would be “simple” and was reminded that she had already gone through a total hip reconstruction that may well belittle any future procedures!

Since the procedure would be early the next day, I had to ship off big brother and big sister to homes of friends and family. We are so fortunate to have such a strong support system! I spent the evening cleaning and changing sheets in hopes of removing any possible sources of infection … crazy, I know. Then Jennah had the last shower that she would have for a couple of weeks, which was heart-breaking because she really, really, really LOVES her nightly showers! I gave her the ritual pre-surgery, antiseptic antimicrobial Hibiclens (4% w/v chlorhexidine gluconate) skin cleaner treatment, which made her smell like a super cuddly sterile glove.

I was totally wired and couldn’t sleep as I kept running times and tasks through my head:
11:00 PM – last medication dosage … give extra Miralax to offset post-anesthesia constipation; pack bag w/ extra clothes, formula, tubes
1:30 AM – switch to clear liquid, increase rate to 90 ml/hr; set alarm to 5:30 AM
5:30 AM – turn off feed; pack up feeding bag and leave by door; set alarm for 6:45 AM
6:45 AM – get up! don’t hit the snooze button! make coffee; make sure hubby is awake by 7:00 AM (my 4th child, right?)
7:30-7:45 AM – leave the house
8:30 AM – check-in time

I was rewarded the next morning with an on-time departure WITH coffee for the road … small wins make me happy!! Smile

I always get to cruise straight to registration, with a quick smile to security and the greeters, thanks to my fancy Seattle Children’s volunteer badge.  I ditched poor hubby who had to get a badge … ha ha … small pleasures.

As we proceeded with registration, I had a spontaneous brain fart and recalled that our last visit there was with Jennah’s rehab doctor who performs Jennah’s Botox injections. We discussed the possibility of piggybacking a Botox treatment while Jennah was under general anesthesia. I went ahead andWP_001081 mentioned this to the nice girl doing our registration, and she put in a couple of calls to get Jennah’s rehab doctor paged. Of course, the doctors returns the page within seconds and as the message is relayed to the doctor, I hear through the phone, “Oh yeah! Totally!!”. Yes, rehab doctor is hip (no pun!) and young … and so very AWESOME! She has been with our beloved Seattle Children’s Hospital for less than a year, but she is going to be very successful here. The registration girl had a surprised, confused look on her face as she hung up and told us that the doctor wants to do the procedure and will “track us down”.

Anyway, fast forward … rehab/Botox doctor got the OK from Jennah’s orthopedic surgeon for the piggyback … yay! We wiped Jennah down with more antimicrobial wipe, and changed her into a gown. The consent forms were signed, and the doctors wrote their initials on Jennah’s pecs, hips, and inner thigh so they’d remember where they were supposed to cut/poke once they get in there. Finally, the went through the safety protocol checklist and wheeled Jennah away at 10:15 AM. The rehab doctor phoned at 10:35 AM to let us know Botox was done. Then we were paged just before 12:00 PM when the hip procedure was done. We were finally reunited with Jennah just after 1:00 PM and discharged and home by 3:00 PM. All in a day’s work … phew!

Everything went as smoothly as we could have hoped! She did have a bit of trouble waking up after anesthesia, but this is typical for her. The ortho surgeon also confirmed that we made the right decisionWP_001088n to remove the hardware! Apparently, once they got in there, they saw that there was, indeed, some irritation and bursas forming around the brackets. Wow … so glad we didn’t leave them in for much longer. 

She’s doing really well today … such a trooper! She is noticeably swollen and seems tender to the touch, but her pain seems to be extremely well tolerated! The only real issue is that I can’t get her to take in enough formula since she keeps vomiting when I get to a certain rate. I think she’ll be ok in a couple of days. She can have her first shower in 4 days and resume therapy in 2 weeks!

Tuesday, June 25, 2013

June … dreading it

I’ve been really upbeat and nonchalant about it, but it’s almost time … June is here.

First, Jennah completed her entire Kindergarten year!! We are so incredibly proud of her! We had an incredible staff of 12+ people who helped her develop and grow this past school year. We are planning to let her attend full-days next year for 1st grade, which includes taking the bus to and from school … what will I do with myself?!WP_001001

Team Jennah’s Joggernauts also returned for our third year at the Epilepsy Foundation Northwest’s annual Walk/Run for Epilepsy. It was very low key this year, but we still managed to raise over $1000 from the generous support of our friends and family and we had our biggest team yet!EpilepsyWalk 005

Things are going really well … so why am I whining so much? What could I possibly be dreading? Indeed, this has been such a wonderful year for Miss Jennah. She’s been progressing so well and making huge strides and accomplishments. She hasn’t been in the hospital since March 2012, is starting to eat and vocalize, and rarely cries unless she is tired, overstimulated or uncomfortable. She is so healthy and so happy.

We’re going to put an end to her happiness again. Jennah is scheduled to endure another procedure in 2 days to remove the hardware from her hips. It’s a “minor” procedure in comparison to the total hip reconstruction of 2011. It should only take 1 month to recover. It has been over 2 years since the reconstruction and the bones have fully healed. There is no need to keep the hardware in her body … they are foreign objects. We know that she can’t sit on hard surfaces because they bother her. We know that she side-sit at certain angles because the muscles snap against the bracket. We know this because we can see it in her face and she flinches. But she can’t tell us these things. She can’t tell us if she wants us to take the hardware out. She can’t tell us if the anesthesia makes her nauseous. She can’t tell us when and where it hurts. The Wong-Baker pain rating scale that is used for children … the one with the faces ranging from smiling (no hurt) to tears (hurts most) … is useless with her. We’re choosing for her with total disregard to her desires … right?

We’re going in for the pre-op visit tomorrow. We’ll ask questions about procedure and recovery time. We’ll ask when she can ride and swim again. But nobody will ask her if she wants to go through with it. Nobody will know when we’ll see her smile and dance her legs again. She’s going to cry again.

My friends and family are relentlessly supportive and have stepped up once again … you will never know how much your support means to us.

005Please pray for us … pray that Jennah will recover quickly and with as little pain as possible and that we will take comfort in knowing that we are making the right choices for her and that she doesn’t hate us for inflicting these procedures on her…

BTW, I badly sprained my ankle 19 days ago. Ligaments are torn, tendons are ruptured. I can’t do yoga or run. I really, really want to run right now …

April & May … Springing along

Look at me catching up on my blog posts! It’s really because I have so much to say about June … stay tuned!

April was a hideously busy month! In addition to my new found love of working out, I also began volunteering more at the Seattle Children’s Research Institute. It’s where I can get away, but still do something that’s “good” to ease my guilt of the need to get away from it all. The month of April was also consumed with preparations for the annual Seattle Children’s Clare Beckett Guild auction event, which took place on May 4. I happened to be this year’s speaker and had the opportunity to share Jennah’s story to a live audience for the first time. The event raised over $53,000 for Seattle Children’s uncompensated care fund … awesome!

The auction also showcased the amazing work of Soulumination, an organization, that through photography, helps families celebrate the lives of children and parents facing life-threatening conditions, completely free of charge. Please visit their website, but make sure you have some tissues at hand! Here is a slide (should have read “Aug 2007”… oops!) from a slideshow that I produced for the auction, which featured one of the photos from our session.


Among other news, Jennah has moved into her own bedroom!! Her fancy medical bed (the SleepSafe Bed) arrived in a record time of less than 3 months! These babies cost over $10,000, but we are so very fortunate to have insurance that allows us to afford this equipment. After the experience of living overseas and the painful attempt to get any piece of durable medical equipment, you will never hear me complain about insurance in the U.S. Jennah’s big brother graciously moved out of his room (he had designed the stripes and chose the paints himself) since it’s the one closest to the master 008bedroom. Quite honestly, when we moved back from Dubai, we never imagined moving Jennah into her own room! But Miss Jennah has surprised us once again with a very smooth transition. She began sleeping through the night within the first week! Darn it … her doctor may have been right about me being at fault for her frequent waking! On the other hand, I still frequently wake through the night to check on her … I don’t think that will change anytime soon, but I’m OK with it. Additionally, we did another medication tweak to help things along and she still wakes a little too early in the mornings due to one of her morning meds causing some gastrointestinal discomfort. We plan to tackle this issue during the summer … why wait until then? Stay tuned for the June update …

April and May also led us into a very busy Little League season for both Bassil AND Jennah! Ironically, they were both on Mariners teams this year and we took Jennah to her first Seattle Mariners game … she had a blast! It’s not very well known, but within the greater Little League organizaWP_000924tion are divisions for players with special needs! Jennah played on the Challenger baseball team through Sammamish Little League this season. I say it often, and I’m going to say it again … we are so incredibly blessed to have a child with special needs! Jennah has introduced us to so many amazing people. The Challenger baseball team we joined had an amazingly enthusiastic coach and incredible “buddies”, who are other typical Little League players that volunteer their time to help the players with special needs. They help the kids bat, catch, and in Jennah’s case, run her chair around the bases. She LOVED running the bases and was squealing and screaming with delight! The “buddies” are just the most inspirational, wonderful, selfless kids … not enough words of gratitude can be said for them.

And last, but certainly not least, Jennah’s uncle, Matthew, earned his Doctorate of Physical Therapy! Congratulations Na Matthew! Jennah is one lucky little bug … one uncle is a nurse, and the other is a physical therapist. I’m going to go ahead and credit Jennah with the positive influences on our decisions and the paths we choose to take. Some think having a child with special needs is unfortunate or a burden (yes, people have actually said this to my face …).
I beg to differ.

Saturday, June 22, 2013

Marching along …

I know, I know, I’m terrible at this blog thing. It’s unfortunately low on my priority list until friends start inquiring about an update and I make a blatant request on Facebook to help keep me on my blogging toes … so thank you all for continuing to follow us on this journey!

My last entry was mid-February, so I’m going to try to write a recap for each month I’ve missed over the next few days … then hopefully we won’t end up with too much of my rambling and keep it a bit more interesting!

After our successful swallow study in February, Jennah began oral/feeding therapy. It was a slow start, but she has progressed well since then and enjoys vanilla or honey yogurt, and LOVES graham crackers!  She smiles at the smell of graham crackers and likes the <crunch!> sound when she manages to bite down. It might seem surprising that we would feed her graham crackers, but they actually dissolve quite quickly. She also likes tomato and red pepper soup! She still struggles a bit with thinner liquids like water, but she manages to cough and protect her lungs well.

At the end of February, we went for a visit with ophthalmology. Jennah has been exhibiting behavior that seems like she is able to see more. However, the ophthalmology visit was scheduled to last nearly 3 hours and we were excused after the first hour. We know she has cortical vision impairment, but we kept hoping that maybe something would be triggered or rewired. Unfortunately, this is not going to happen … Jennah is, and will continue to be, blind. She is simply incapable of learning how to see since that part of the brain (the occipital lobe) has been severely damaged. There is actually some research going on about correcting this dysfunction, but it’s not going to happen anytime soon. The doctor was very apologetic , but I’m really OK with it. It was disappointing, of course … we want everything for our sweet Jennah, but we can’t have everything. It’s not a loss because she never had it. As one of my very wise friends said, she’s made leaps and bounds this year … vision just isn’t one of those leaps! So we’ve moved on … it’s not that we’ll ignore her vision altogether, it’s just not something we’re going to focus on or take time out from her strengths to work on.

Speaking of strengths, I was becoming physically weak. Jennah has really grown  these past few months and measured overBWike 3 ft. long and 40+ pounds. When I carry her, she’ll either be limp like a bag of rice, or do the dancing robot. My neck and shoulders were constantly in pain … I was getting tired and depressed. At the end of February, I decided to join the gym and purchased the WIKE, which is a trailer/stroller/jogger for kids with special needs. It has been awesome. I dare say that I feel and look great! I am determined to take Jennah wherever I can, whenever I can. I’ve started running, weight-lifting, and doing a lot of yoga. I dream of running a half marathon with Jennah some day. But for now, I will train and build strength. I need to stay strong for her, physically and mentally. So in March, I ran my first race, the 4-mile Seattle St. Pat’s Dash…liberating.

Wednesday, February 13, 2013

The Swallow Study

Ironically, this is Feeding Tube Awareness Week! A swallow study is often performed in conjunction with an assessment for a gastrostomy tube (g-tube). This was Jennah’s first swallow study since 2008. It was nice to see the same speech pathologist that worked with us nearly 5 years ago. I recall Jennah was seated in her infant carrier back then and had several seizures during the study. She choked, screamed, and spat up. In the months following that first swallow study, she would regress from the seizures and lose her ability to suck and swallow. She eventually fell off her trajectory on the growth chart and was dehydrated and malnourished. At the time, we felt that we were “giving in” to the g-tube. Now we realize that it has not only given her (and us!) a better quality of life, but it has saved her life.

As I wrote in my last entry, Jennah has been making great strides. One of her accomplishments has been the visual cue of lip-smacking (for you seizure-savvy folks, we’ve confirmed that this is not a seizure Winking smile ) when she has dry mouth and she is maintaining her secretions (drool) quite well. She also seems interested in the smells (although sometimes adverse when it comes to Thai food!) of food. Of course, we strive to give her everything she desires and to enjoy all of the great things life has to offer, such as the taste of really yummy food!

Cue: swallow study! We are now in a place where we can consider working on Jennah’s oral motor skills. She will never eat full meals by mouth and we have no intention of removing the g-tube. We have accepted the wonders of the g-tube. We love the g-tube. We embrace the g-tube. Celebrate the g-tube! OK, you get the point. We do want to let her enjoy the taste of food and perhaps do an even better job with her secretions. What’s more is the possibility of increased vocalization! Jennah has the cutest, sweetest voice … we want to hear it more! Of course, there may be times that we won’t want to hear it, let alone teaching her to use “inside voice”, but we’ll tackle that if we ever get to that point. One day, one skill, at a time.

What is a swallow study? It’s known as a video-fluoroscopic swallow study (VFSS) or modified barium swallow study (MBSS), and they make her swallow a bunch of barium (makes chalky poop) and video x-rays are taken during the act of swallowing. The mechanics of swallowing are crazy complex and amazing.WP_000803 I’m not going to go into the whole science of it, but they basically make sure that the liquids/food goes down the esophagus and that her muscles are able to close and block off the trachea quick enough to protect against aspiration. We mixed barium into some strawberry yogurt and she swallowed it like a pro. We then put barium into water, but gave it to her only a few drops at a time from her bottle. Again, not much of a problem, although delayed. The water was room temperature and she couldn’t “feel” it in her mouth. Next, we gave her the barium from her cut-out cup. This would be the “challenge” test. I gave her more than usual and she managed it pretty well! There was the slightest bit of a “leak” into the epiglottis, but she was able to repeatedly clear it out. Yay, Jennah!

So we now have the green light to begin oral motor therapy and to feed her by mouth as tolerated and accepted. I’m going to share some sweetened condensed milk with her. Jennah is glowing … not just with pride, but with the massive amount of radiation she’s gotten from so many x-rays! Between CT scans (no radiation with MRIs) swallow studies, gastro-anatomical studies, 10+ hip x-rays, upcoming spinal x-ray … I digress and know the amazing body recovers, but you gotta wonder … Winking smile

Friday, February 8, 2013

We love it here!

I know … I say it every time, but I’m a terrible blogger. I don’t know if I even qualify as a blogger at this point. Nonetheless, our dear friends are inquiring on Jennah’s progress and I hope that others who may be beginning this challenging, yet incredibly rewarding, journey will find solace and support in these words.

I initially started this blog as a way to express my grief, rants and rage. But as the years passed, grief has turned into acceptance and extreme pride. J_stand1012I do get saddened when I look in the closet where cute dresses are hanging in a row … dresses that I never get to put on Jennah because they only get crumpled up beneath her or twisted up in her feeding tube. We’ll never have a picture of her running and twirling in a breezy little spring dress. Instead, we get proud pictures of her in a standing frame. But there will always be something supporting her, or someone holding her up; I worry that she can never truly be free. Perhaps it’s better to think that she’ll never be alone; she’ll always have someone by her side and always be loved.

Jennah has made amazing strides since my last post. Most notably, she is going to school 4 days/week and actually likes it!! You may recall that preschool last year was extremely challenging. Jennah was often ill, spitting up, crying, and having seizures. However, we had a very productive summer with medication adjustments, a lot of horseback riding, and the continuous feeds. She no long spits up and is able to control her drooling much better now! Her seizures still pop up from time to time, but they are overall well-controlled. I’ve been saying it a lot, but we really haven’t been here before, and you know, we like it here! Life seems almost “normal” and dare I say, some days are a little bit predictable. I take Jennah to school in the mornings and can actually get a couple hours to myself! I do have the phone near me at all times and dread getting a phone call during yoga or if I’m further away in Seattle, but so far, it’s been good! I don’t know what they do at school all morning, but she comes home smiling and dancing every day. I do know that the teachers, therapists, and staff at her school, Cascade View Elementary, are amazingly kind and supportive … we are so fortunate to be where we are.

Our last visit to the neurodevelopmental clinic has resulted in a very busy, and somewhat stressful, month! It’s been a long time since I’ve had to juggle so many appointments, but this is a good thing.DSCN4122 We are going to revisit her oral motor skills and do a video swallow study. The results will help outline a feeding/speech therapy plan so that Jennah may be able to enjoy a little bit of social eating and perhaps vocalize a bit more. We are also going back to ophthalmology. This one is very exciting! We think she is learning to see a little bit! We’ve been noticing some gazes from her and her school had a vision specialist visit and confirmed that there is definitely something brewing with her vision! So we’ll want to see how we can help her reach her fullest visual potential … go Jennah!

And lastly, people are trying to get me unattached from Jennah’s hips. This piece is for me. I can’t seem to leave her side. I rarely even travel more than 10 miles away from Jennah’s school when she’s there. I know I have a very dependable support structure, but I can’t let go! So … one of the first steps for me to overcome my addiction to Jennah is a “durable medical equipment” assessment. The doctors (and my husband) want to move Jennah out of my bed. The biggest challenge with Jennah right now is sleep. It is common for children with cerebral palsy to have difficulty sleeping as their muscles tend to get tight or their brain is always on fire since everything little action that we take for granted, like sleep, is that much more challenging. However, Jennah can now move around and reposition herself better in her sleep now. I no longer need to wake every two hours to rotisserie-flip her. Am I to blame now for her restless nights? Me? really??! Oh yes, I am dreading this appointment for sure! Winking smile