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Arden

 

 

Spring came early in 2009, our then 3-year-old daughter is an avid puddle jumper and my 9-month-old son has an ear infection. I am sleep deprived; my husband and daughter decide that it’s perfect weather to go puddle hunting and jumping. 

A few days later, we rushed our 3-year-old little girl to the hospital in Fergus, our hearts heavy as we knew something was wrong. The triage nurse was ready to send us home but I knew something was wrong.  They would keep us but under observation only. At 8am, our little girl goes into seizures and they are not able to stop them. She is then stripped and intubated, this memory will always remain with me as this exposed the vulnerability of our daughter. This was a necessity for our daughters safety as they were transporting her to the McMaster’s Children’s Hospital and they couldn’t risk our daughter going into respiratory arrest.

Over the next few days, the doctors were baffled at our daughter’s condition meeting with specialist from around the world to determine what was the cause of her reaction to Influenza B, commonly known as the flu. In Canada, the active influenza season generally starts in November and ends in March. The number of hospitalizations and deaths associated with influenza are used to measure the severity of the influenza seasons. It’s never clear the amount of hospitalizations and pediatric deaths when it comes to the flu. The number ranges widely from one year to the next, from 700 to 1000 hospitalizations to 7 to 20 pediatric deaths, however this information is only as reliable as what is reported to Health Canada.  Don’t ever let anyone tell you, it’s just the flu, this is a mutative virus that even scientists are currently unable to stop. The flu vaccination, good hand washing and proper social consideration are you best defense against it.

 

 

 

That first night, I had my husband call his mother since they were local to us, to see if she would help caring for our 9-month-old son that had an ear infection and running a fever. However, for reasons that still escape me to this day, she refused and maybe, just maybe, that was a blessing in ours and our children’s journey. You will soon see why.

 

We were first greeted by a social worker in the pediatric intensive care unit (PICU). Our first reaction was this can’t be good maybe we watched too many episodes of Law & Order. However in Canada, it is common practice during an acute crisis, that a family is assigned a social worker and this is to ensure that the hospital’s and the families’ needs are met. Now remember our son is also sick and because of this, he is banned from entering the PICU. My husband and I take turns to be at our daughter’s side. My sister and my brother in-law and his wife take turns to be with our son and be with us until we meet with the doctors.

 

Typically, the social worker only follows your family while you are in PICU but our story marked her so much that she follows use throughout our entire stay and sheds tears with me when the magnitude of this change came crashing on me. To this day, when our paths cross as Arden is still being seen at McMaster Children’s Hospital, she still remarks on how strong of a mother, I am for my children. That I always have a smile no matter the challenge I am facing at that time, a kind word and sympathetic ear for my friends.

 

On March 20th, we send the following message out to our friends and family. “Today we finally got to see the MRI. The inflammation has gone down drastically. This is a good sign, that Arden is going in the right direction. We are very hopeful at this time that she will recover fully from this situation however there are still chances that she might have some disabilities in the sense of tremors or problem regulating her heart rate/body temperature. The good thing about this worst-case scenario is that Arden will be able to live a normal life even with these kinds of disabilities. This gives me great hope.The doctor cannot predict at this point if she will have any disabilities and/or if she will recover fully. The next 6-8 weeks will be the ones that will tell us what is happening. We have started some physiotherapy and working with another therapist to keep her mind active because through all of this our little girl is very aware of what’s going on.”

 

I remember being devastated when I saw this MRI. I remember the young doctor smiling when giving us this news, using lesions and inflammations interchangeably and not explaining to us that in the medical world that this meant the same thing. I also remember the occupational therapist and the physiotherapist being in the same room and talking me through this process. As you can imagine the full MommaBear emerged at this news, as it seemed by the doctors’ words that my daughter’s life would not progress very much further. As you may have realized this was all clarified before our communication went out.  Now the occupational therapist is a good friend of our family, although we don’t get to see her as much as we’d like to but we do keep in contact. At first, it was thought that Arden was not aware until I was visiting with her and she was tracking me. She was paralyzed for over a week and as she slowly but progressively got better, Doctors still couldn’t give a prognosis on Arden’s condition.

Between caring for her brother as I was still breastfeeding and caring for my daughter my day became full. But in this caring, it grounded me into this world because they needed me. My son needed my attention to play at the Ronald McDonald House where we were staying. He also played a big role in helping grieving mothers who had infants in the neonatal ward. This cherubic baby with golden brown curly hair, with his two little front teeth, a fast smile and dimples would melt anyone’s heart. He visited with a lot of people and received a lot of attention. My husband got into a morning routine when I left for the hospital to take him for a walk and like any good Canadian, his path led them to Tim Horton, where my son’s chubby little hand would clutch the Timbits that were offered to him by the clerk at that time.

You will hear from parents of children with special needs just how special these siblings are and this starts at a very young age whether they know it or not. As Arden struggled to roll over and got frustrated, her brother would climb in her bed and climb on top of her then the giggles would start, first by Xavier and to our delight, Arden would laugh also. How lucky were we to be able to hear our daughter’s first laughter for the second time in our life? This all because a little boy simply wanted to play with his sister, both of whom had no words to communicate but managed through smiles and giggles. Arden has loved her brother from the minute that she was aware that he would be born. I can still remember her screaming at my 8 month pregnant belly “Get out so I can play with you”.

On March 26, after a full day of rest Arden showed dramatic improvement.  She started saying “hi’ and “yeah”. She was full of smiles. We did her swallowing test and were able to give her some pureed food. Eating is a crucial step in being able to develop verbal skills. Different food and texture helps challenge and develop different oral muscles.

April 15, we get to come home for the weekend. At this point, the kids and myself have not been home since that night on March 10th. Our cats are ecstatic to see us. They greet us at the door and won’t leave our side, they rub themselves all over Arden, even though she can sit, she cannot really get away from them at this point. She wouldn’t want to get away from them anyway, she so happy to be home, in her things, with her animals and her family.

Come Monday, we are resettling at Holland Bloorview Rehabilitation Centre for the next while to get Arden the best therapy available. Holland Bloorview Kids Rehabilitation Hospital is Canada’s largest children’s rehabilitation hospital, focused on improving the lives of kids with disabilities. For the next 18 weeks, we are focused on hourly therapy for Arden which includes physiotherapy, occupational therapy, speech therapy, and recreational therapy. Arden re-learned to sit, talk, walk, eat, crawl, write, smile, laugh. Her motor skills were non-existent in those first few weeks. We all know how precious those first steps are when our children are little and you don’t realize how much you take for granted until it’s lost. We celebrated every milestone as Arden reached them and her little brother, Xavier who was following closely ahead or behind at the time. Arden’s a determined little girl.

On our first night at Holland Bloorview, Xavier pulls the code Blue.  Everyone comes rushing into our room, although it wasn’t funny at the time. It sure is a memorable moment.

On May 11, we send out this information to our friends and family:

“Hi Everyone,

Just thought that I’d let you guys know about the progress that Arden has made in the past three weeks. Arden is now speaking clearly although it takes time for her to formulate what she wants to say. She is talking to me in full sentences and a few words to everyone else. Her speech therapist is now readjusting what they are doing with her.

She is crawling, she went through a tunnel this weekend at home. She is still slouching when she sits but her protective reflexes are there to help her from falling over. At this point, she still has tone on her right side, especially her right foot. Her heel is not coming down. They are talking about maybe doing Botox and putting a splint on her to help it along. I guess I will know more about it this week. I can bend her right foot upward when she is sleeping (easier, she doesn’t fight). I still have some reservations about Botox injections.”

I remember crying when they did the Botox injection, even though I understood what we were trying to do and did, successfully. I wasn’t keen on having a Botulinum toxin injected in her body. We went through serial casting and Arden progressed well. By the end of June, we were in a lock down on getting her to use her walker. Once she passed the initial stage, she was walking everywhere.

During that time, to save money, my husband and son stayed at home. For 15 weeks, I only saw my son and husband on weekends. I missed them terribly but it also gave me an opportunity to cultivate friendships with other families. We would watch the Bachelorette and wander the hallways at night when we couldn’t sleep, keep each other company during therapy and if the kids were off doing something where they didn’t need us. I still speak to some of them and try to get some news on the kids on an occasional basis. Children with Traumatic Brain Injury are amazing in their determination in accomplishing their goals. The brain has a way of rerouting itself and healing.

We came home from Rehab as of July 30th. Arden now has AFO’s (commonly known as braces) on both feet. This helps her walk and keep the tone on her right side manageable. She is walking with a walker for about 5-6 blocks a day but if there’s something more interesting she would probably be walking longer. She is very timidly trying to walk on her own, like any child learning to walk she just needs to build her confidence. She is however cruising along the furniture, if you are not fast enough to get her what she wants.

She babbles away all day telling me different stories and reasons why she doesn’t need a bath, and if that tactic doesn’t work then she declares that she needs to go pee. We are still potty training, I had a theory that until she’s more independent that she will be in diapers but only time will tell.

She goes to rehab once a week and they are pleased with her progress on a weekly basis. It’s now November and Arden is now walking (practically running) without her walker in the house/store/any flat area. She is being very brave and trying to walk on her own outside. You literally must hang on to her because she will shove you out of her way. Having said this, I have great hope for her upcoming Botox treatment on Nov 18th, (if the results for the last time are any indication), together with, what I consider 6 weeks of aggressive casting, the cast will be set at a higher angle every week.

She is doing well in OT. We still need to promote some crossover with her arms but I have no doubt that she will be doing this in no time. She’s learning to draw squares and triangles and is very interested in writing her name.

Her speech continues to improve and her imaginative play has exploded. In the last month, I’ve seen her walk away from my general vicinity to go play with her Care Bears, her Babies or more importantly, to pretend to call everyone so they can visit her.

We went on to have another small episode in Aug of 2010 and did a few days at CHEO in Ottawa.

Family Day 2013, we had a major relapse with a journey similar to the above however Arden now has necrosis on her cerebellum and her brain is no longer able to coordinate her being able to walk…….

Isn’t it amazing how one little person, can go through so much, be so resilient and be so sociable?