Tuesday, June 28, 2011

Daycare Dilemmas

My search for a daycare for Piper started back in February 2010 when I found out I was pregnant. Right away I called a couple of daycares and got on their waiting list. This is “the norm” in Toronto. When my son was born I waited until he was a couple months old to call daycares. I was told time and time again that they had a 1½ to 2 year waiting list. So this time around I was diligent knowing that I would go back to work when Piper was one year of age (October 2011).

Unfortunately we didn’t know that Piper would be, well, Piper! Her hypotonia and the not knowing have created a problem when it comes to her care. What does she need and how do we get it?

I started by calling the daycares I have her on the waiting list for. Both of them do accommodate children with disabilities up to a certain point but the issue is we don’t know what her disabilities are. The city kicks in a worker to help Piper depending on her needs. She may get approved for only a few hours a week up to 40 hours. It depends on her needs at that time. If her disabilities seem more severe then the daycares that I signed up for will not be able to accommodate her. UGH!

This sparked a search for more daycares that will accommodate more severe cases...and of course the waiting list is huge for one that is in our area. Well, I got on the list and hopefully I won't have to use it. This just shows that no matter how you prepare for life it will always throw a curve ball your way.

Wednesday, June 15, 2011

Persistence Pays

At 2 weeks of age Piper was seen by the Neurology Department at the Hospital for Sick Children (Sick Kids) here in Toronto. She had an MRI and an EEG performed and needed to be assessed. Luckily the doctor who would be assessing her was Dr. Brenda Banwell. She is a leader in her field of pediatric neurological science and specializes in neuromuscular disorders. She studied at the Mayo clinic for a few years and is a professor here at the University of Toronto.

When Dr. Banwell looked at Piper and her test results she said it was all normal and Piper needed some time to recover from her birth and jaundice. She didn’t think that we would be back to see her. Unfortunately that wasn’t true. Since Piper did not “recover” after 3 months like she thought our pediatrician thought it was best to go back and see her.

This may seem like an easy task, going back to see a specialist that we’ve already seen. That didn’t turn out to be the case. Because we were seen as an in-patient before we were now considered a new patient. In our Canadian Healthcare system this means that the patients who are currently seen by Dr. Banwell would be given slightly more proiority. In January we were given an appointment for the end of September! To me that was ridiculous, Piper would be almost a year old by then!

As Dr. Banwell only runs clinics once a month and is very busy I was told that we would have to wait. I complained to my pediatrician who called Dr. Banwell (with no luck) and I set my sights on calling the neurology clinic every couple of weeks to find out if there were any cancellations. I got to know the nurse and she would tell me, “No, nothing yet.” I think she started to feel bad for me.

So imagine my surprise when just last month I was sent a letter telling me that my appointment was moved to the end of October due to Dr. Banwell being away. The appointment was just a few days before Pipers first birthday. I was livid.

Again I complained to my Pediatrician and decided to call the clinic every week. I put the appointment in my BlackBerry and never missed a week. Yesterday I called and left a message and the nurse called me today. She said that she has an appointment for August 2nd for Piper! Yippee! It’s not tomorrow but it’s better than the end of October!

I really feel that we are blessed to be living in a country that provides health care free of charge and that we live in Toronto where the best pediatric hospital in the country is. I can’t imagine the trek that some families have to make from across Canada just to visit Sick Kids. Or worse yet the amount of money that some Americans have to shell out to get the best care for their child.

Now the drawbacks are few with our medical system here in Canada but I’ve discovered that you need to be persistent and manage your child's medical care closely. If not you can get pushed to the end of the line or muddled in the bureaucracy. So continue to challenge your kids healthcare and do your own research regarding doctors and therapies. It’s us moms who fight for our child’s life that make the real difference!

Tuesday, June 14, 2011

Adding a New Physical Therapy to our Regimen

I’ve recently added a new type of physiotherapy to Pipers regimen. Yesterday was our first appointment with the MEDEK physiotherapist. MEDEK trains the muscles to do movements instead of normal physio which exercises the muscles in isolation. It assumes that the movement will affect the development of the brain and therefore improve.

Yesterday was our first appointment with the MEDEK physiotherapist. At first I was a little skeptical because the office was in a townhouse complex and you had to go down to her basement. She assessed Piper with a few movements and exercises. Piper has good control keeping her head from falling forward, okay with side to side movement, and is weak preventing her head from falling backwards. She also has weak arm and torso control. Her legs are strong though.

So with that assessment she asked me to grab my phone to tape the exercises so I could do them at home (great idea). The exercises were amazing. With the OT coming to our house and doing physio with Piper I’ve never really seen her “work”. But these exercises were making her work against gravity and making her move!

The therapist gave us four exercises to do twice daily at 5 times each. I liked how it was a routine and I was told how many times to do them. I was never told that with our OT’s exercises.

Piper hated doing the exercises but for the rest of the day I could really see a slight improvement in her. She even stayed awake from about 4pm to 9:30pm straight! That is amazing for her!

I’m very hopeful so we’ve booked another appointment for next week. I wish that these exercises will improve her neck control and that she’ll be able to hold her head up soon!

For more info on MEDEK Therapy you can go to www.cuevasmedek.com or www.medek.ca

Friday, June 10, 2011

Laughter IS the best medicine!

Piper smiled at 4 months of age and by 6 months I could count on one hand the number of times she smiled after that. So to see a smile on my little girls face is such a special treat to me! Now Piper smiles several times a day and wow what a special treat for Bay and I. A few weeks ago she said AHHHHH and just two weeks ago on my birthday she giggled a bit. What a great birthday gift that was.

Tonight, Piper reached up and grabbed her hair. This is something she does often as she has so much of it. But when she took her hand away it messed her hair so it looked like a Flock of Seagulls haircut. Well, I started to laugh hysterically. It looked so cute on her! I pulled out my camera and tried to get some good shots...as I was doing this she started to laugh. Not a giggle or a haha but a full o n LAUGH! My husband ran in from the next room because he could hear her. I put down the camera and the next thing I knew she was babbling! Piper has never done more than AHHH before but this was real baby talk!

I am so happy right now I could cry. Just yesterday I was in tears over her difficulties eating and today I am overjoyed. This emotional roller coaster that I’m on is worth it as long as I go back up that hill!

Thursday, June 9, 2011

Difficulties Feeding

The past few days have been hard to get through. Not only is my husband away for work since Saturday morning, but I’ve been starting to feed Piper puree. Since Piper is 7 months old it’s about time I try. We’ve been going to the feeding clinic at Sick Kids to get some tips from the OT.

It takes a lot to get her ready to feed and most of the time she is just too tired once I get everything done! We went out and bought a special chair for her to sit in at an angle, then I need to stuff blankets around her body and head to keep her straight. Once I have this accomplished I go in for the feed! Basically I hold the spoon on her lower lip and wait for her to try to suck it or stick her tongue into it. Since she has such poor muscle tone it’s hard for her to open her mouth or even get the rhythm of opening and closing or using her tongue to move food to the back of her mouth. It takes so much patience and persistence that yesterday I broke down in tears!

Because I have a 4 year old I’ve been through this and know what the opposite is like. I started thinking of how many problems she's had through her short little life and eating, one of the most basic things a baby does, is so difficult for her! Even drinking a bottle of milk isn’t simple for Piper. I have to thicken her formula with cereal so that she doesn’t aspirate.

Life is so precious and so fragile that even the simplest things that Piper will try to do will be 10 times more difficult. We all, including myself with my son, take for granted what our babies can do naturally and even brag about these simple things to others. But what we really need to do is take a second to think about our children and how LUCKY we are to have a child that can eat. Even moms who cannot breast feed know how something that is supposed to be so “natural” cannot happen for some.

So to conclude I say this to those who have healthy babies...be happy with what you have and don’t flaunt or show off simple tasks. Instead look at your child and be happy that he/she is alive and healthy because there is not one day, one hour that goes by that I don’t wish my child was “perfect” like yours.

Maybe I’m just PMS’ing a little...sigh. Okay, I’ll wipe away the tears and head off to pursue yet another feeding...

Saturday, June 4, 2011

There IS somebody else out there!

For both of my babies births I had a midwife. I love how midwives get to know you and are there for you on an emotional level compared to doctors. It just seems, to me, more natural.

After Piper was born and diagnosed with hypotonia my midwife told me how she had never encountered a baby with hypotonia in all the years she practiced until recently. She had a birth two weeks before mine and the baby had hypotonia and now there was Piper with hypotonia. Odd for my midwife to have two women with hypotonic babies within two weeks, but even weirder is that this other baby has the same pediatrician as Piper. Wow, what are the odds?

So since there isn’t a “Parents with Hypotonic Babies” group that I could join (this would be similar to someone looking for a “Parents with Runny Nosed Babies” group) I asked my pediatrician if it would be okay to contact this other mom. She contacted the parents and passed along her phone number to me.

Ali and I chatted a couple of times and planned to meet once before. Unfortunately, due to some health concerns we had to delay our meeting. So finally just this past Thursday Piper and I met Ali and her daughter Gavriella.

It was so comforting to meet someone who was going through the same emotions as Bay and I. Although Piper and Gavriella have varying degrees of hypotonia and different health concerns the similarity they have is the lack of a diagnosis. We both still don’t know WHY. We chatted for a good hour or two and compared notes and experiences. I left feeling better about my situation because there was somebody else out there persevering for their daughter. Ali, and the strength she had, was just what I needed.

Thursday, June 2, 2011

Getting Through the Worst!

It’s funny because I was having a conversation yesterday with a friend of mine who is going through some intense stuff too and I realized how the first couple weeks after receiving bad news is very surreal. I remember sitting there and thinking this is all a bad dream. I was waiting to wake up. I even paid attention to certain “normal” goings on in the hospital to find a glitch to prove its a dream to myself. Like, oh that nurse is walking backwards or that doctor had blue eyes before and now they are brown AHA, IT’S A DREAM! Stupid! But I guess thats what helped me handle the difficult situation...

So we continue at the hospital when Piper was admitted to the NICU. For the next three weeks Piper went through test after test to find out why she was so hypotonic. From genetic testing to infections to metabolic testing, we did it all. Nothing came up out of the ordinary. We did an MRI, EEG, ultrasound of her brain and they even gave her a spinal tap to check for meningitis. All normal!

Now this is good but bad news. The doctors checked for the most obvious or common things first. So for example of it was an infection (which is common) we could treat it. The problem was that all her tests were coming back normal and now we would delve into the more uncommon or more severe conditions.

The other issue with Piper was that she could not feed very well. Her suck was weak and uncoordinated which made feeding her almost impossible. I persevered and went to the hospital for 8am every morning and wouldn’t leave until 10pm at night just so I could feed her. The thing was that the nurses would get frustrated feeding her and say she needed to be put on a feeding tube. I refused and said I would stay as long as I can to feed her every three hours and that is just what I did for three weeks. I also pumped every three hours so that she could have as much of my breast milk as possible. I was exhausted! To pump every three hours and then have to sit and feed Piper, which took at least an hour for her to drink an ounce or two was killing me. Combined with the stress of still not knowing what was wrong with Piper and not having any time to recover after the birth...I was not well!

People tried to be supportive and give me kind words of advice but I could’t hear it. I just wanted to be heard. I wanted someone to listen to me complain and cry. If a friend or family member visited I just wanted to talk about something else for a while too. I know people meant well by saying, “I know how you feel” and comparing Pipers health issues to something that happened to them, but I didn’t want to hear it. No one “knew” what I was going through and I didn’t want them to. I wouldn’t wish this on anyone.

So needless to say, because of her decreased weight gain Piper needed to stay in the NICU until she could feed better. I just wanted to take her home and I was determined that I could help her with love and comforting.

Since they could find no reason for Pipers hypotonia and she had stabilized she was finally given permission to come home on November 11. She would continued to be monitored by our pediatrician and continue to be tested.

So that is where we are now. Piper just turned 7 months old and is followed by a neurologist, osteopath, feeding specialist, OT, opthamologist, geneticist and several pediatricians. To this date they cannot find a reason why Piper is hypotonic and this is where I would like to start my journey. The “not knowing” is what I need to write about. My maternity leave is filled with doctors and specialist appointments. Its like night and day from my maternity leave with my son. This is my life and our journey...

Piper’s story continued...

Once we arrived at the hospital a nurse took Pipers blood and we were told to wait for the results. I look back now and realize I wasn’t worried. There was no panic, no thought of anything bad. I can see now that it was the last moment I really had thinking my daughter was normal.

The nurse came and said Pipers bilirubin levels were bordering the danger zone so they wanted to do light therapy. She was admitted to the hospital into a room that I could stay with her in. It’s called the parent room and has a pull out couch, TV, bathroom, sink on one end and Piper in a bassinet at the other end. We were told she would have to stay the night and I stayed with her while my husband went home to stay with my son. She looked so cute wrapped up in the UV blanket.

Things were normal that night and into the next day. Nurses and doctors would come and go and check her out. Nothing happened until about 10:00pm that second night. A nurse came in to check Piper, nothing unusual, but she left and came back 5 minutes later with a doctor. The doctor was checking a monitor, her heartbeat, her temperature. She then turned to me and told me that Piper was not regulating her temperature and that she had something called hypotonia, low muscle tone. They whisked her out to the NICU in what seemed like 5 seconds. I sat in the room alone, quiet and in disbelief. What was going on? Can somebody tell me what is going on?

The doctor came back in and took me around the corner to the NICU. All I see are premature babies lined up and hooked up to monitors and in the middle of it all is my Piper. A mammoth baby compared to all the rest, but hooked up to the same equipment and in an incubator. She was naked, had an IV and all these things hooked up to her. I turned to the doctor and was angry, I asked “WHAT IS THIS FOR? WHAT IS HAPPENING?” She sat me down to explain that due to her low muscle tone she was not eating very much which has led to jaundice. She was not regulating her own temperature due to the jaundice and she was not breathing properly, so she needed to be brought out to the incubator where it was warm and hooked up to oxygen.

It was then that they told me that the jaundice wasn’t the real issue in Pipers case it was the hypotonia (low muscle tone). Hypotonia is a symptom of so many underlying conditions. They were going to take her blood and start testing for infections, metabolic disorders, brain damage and genetic disorders. My world crashed around me. She started talking about Downs Syndrome, Tay Sachs, Cerebral Palsy and other things that I had never heard of. I don’t think I heard her really. I think I went into a trance. This was all thrown at me and I was there alone. I went back to the room and cried. I now had to call my husband and try to explain what just happened to our daughter and I could hardly breathe, let alone talk.

It was then that the questions started and still exist today, 6 months later. I will explain myself more in my next post but Pipers journey is far from over.