Friday, November 25, 2011

Nannies and Assistive Devices OH MY!

Well, it has come time for me to return to work. After my one year maternity leave and two month leave of absence I will be returning to work in January. With a return to work comes the thought of who will be taking care of Piper and Fynch when I go back. When my son was small we decided to put him into daycare. He thrived in this environment and we are so glad that we made that choice for him. With Piper it’s different. After tossing around a few scenarios we’ve come to the conclusion that a nanny will be most appropriate for her. As well the nanny can go pick Fynch up from school at the end of the day.

Now begins the search for a nanny. I’ve posted an ad on a nanny website and had loads of applications. When I responded back to the applicants only a handful got back to me. I’ve spoken with a few of them on the phone and will start interviewing within the next couple of weeks. It’s so hard to imagine leaving Piper with somebody I don’t really know, but I know I have to do it. I will update everyone on how the search is going over the next couple of weeks. Wish me luck!

On another note we’re starting to look at some assistive devices for Piper. I registered Piper for Easter Seals Canada and they will help out with some of the cost of assistive devices. In Canada this is how it works...75% of the cost of the device is covered by the government and the rest of the 25% is up to you to cover. Now you can see if your insurance company will cover the rest of the cost OR you can apply to charities to see if they will help out. These devices cost thousands of dollars so the cost can really add up. I think right now with our insurance and the Easter Seals we’ll be okay for now, but we haven’t really gotten our feet wet quite yet!

The first device we looked at was a bath seat for Piper. Since she can’t sit up on her own we are currently using a small angled netted bath seat. This allows her to lay down in the bath at an angle, but really the seat is made for newborns and Piper is getting way too tall for it. The seat that we would get is a full mesh chair that will sit in the bath and support her full body. We will be able to angle it more so she can sit up and maybe play for a bit in the bath. As well it’s not as low as the contraption we have now so this will make it easier for us to lift her out of the bathtub! I’ve included a picture at the bottom. Next we’ll be looking into foot braces and possibly a stander to help get her up in a prone position.

With all this stuff it’s still so confusing. Again I never thought I’d be looking for stuff like this for my little girl but I’m coming to grips with it (I think). So many things to think of!! Today we are off to our first visit to a speech pathologist. This should be interesting...

Saturday, November 19, 2011

Current Updates and Turning ONE!

I know it’s been a while since I’ve updated my blog and I apologize. After all the goings on for the past couple of months its really gotten me down. I really haven’t felt like writing. I think I’ll first update everyone on what happened after we noticed she was having infantile spasms.

So the on September 15 we returned to Sick Kids for Piper to get another EEG. She has been having these sets of spasms that last around two minutes where she brings her arms up in front of her and her head flies forward. These are what we think are infantile spasms. I recorded it on my cell phone to show the doctor.

After the EEG the doctor analyzed the results and came to speak to me. He said there wasn’t much difference in her EEG from the week before. He still saw the hypsarrhythmia (unorganized brain) and after I showed him the video on my phone he said that they are definitely infantile spasms. The thing is with Piper her EEG pattern isn’t really typical of what they see in children with infantile spasms, but her physical symptoms were typical of infantile spasms.

So the next step was that he wanted her to go on Vigabitrin which is an anti-seizure medication that helps with infantile spasms. This is the medication he wanted to put her on before and causes the tunnel vision in a small amount of children. So now Piper is on another medication. It’s like a chemistry class every morning and evening in our house. She is on 6 different medications at different times so it can get confusing.

So at the end of September, after two weeks of Piper being on the Vigabitrin, we returned to Sick Kids for yet another EEG. The results were the same. Physically she was not having the spasms anymore, so the medication helped with that. But, on the EEG it remained the same. The medication was not helping with her unusual hypsarrhythmia. Bad news. They decided to keep Piper on the Vigabitrin due to her physical symptoms being eliminated. There was nothing they could do for her unorganized brain.

On October 21, two days before her first birthday, Piper had an ERG (electroretinography). This would determine two things; a) If Piper had any problems with her vision and b) Would give us a baseline used in the future to determine of she was getting tunnel vision from the Vigabitrin. She had to be put under general anesthetic for the procedure. My Mom came with me as Bay had some important work meetings to attend to.

It was hard to see her go through all this but I knew it would help. The results of her vision test is that Piper can see fine. Her optical nerve is a little underdeveloped but there is enough there that whatever messages her eyes are picking up it can get to her brain. Now what happens when it gets to her brain is another story. We obviously have no way of finding out what her brain is doing once the optical messages get there. And we may never find out.

Two days after her procedure, on October 23rd, we gathered family and friends to celebrate Pipers first birthday. It was amazing. My little girl that could was turning one and I was so proud of her.

It took a lot for me to get through the day. Emotions took over when I thought of her coming into this world on that day a year ago and things were so innocent then. The emotions on that day a year ago were pure, untouched. There was no tears of sadness, only happiness and thoughts of opportunity and wonder were swirling around. Ugh it was one of the most wonderful times of my life. Little did I know it would be snatched from me three days later, at least I had three days of normalcy with my baby.

Anyway, back to the party. Overall it was a success. Piper slept for the first little bit. Guests took turns holding her and watching her sleep. The last hour she was awake and we sang Happy Birthday to her and opened gifts. She stayed awake long enough to get through a few gifts. She did really well.

As for now Piper is doing better. She has her strong days where she can sit up assisted and some days where she just wants to sleep. Her head control is much better and we are now working on her trunk control.

Every new day is different then the last with Piper. I’ve learned over the past year to take it like it is. I have no expectations of what Piper can achieve but I do have hope that she will get there.

Wednesday, September 14, 2011

No Better Than Before

This past week has been hard on all of us, especially for little Piper. Last Monday (Labour day) Piper was lying in my arms and I watched as her eyes opened wide and she stared straight ahead. She wasn’t breathing. She started to turn very pink then her face turned grey. Her lips were turning blue. I started to scream and I turned her over and patted her back because I thought she was choking. My husband and son came running into the room and all I could say was “Call 911, call 911!” My husband was frozen so I grabbed the phone and called 911. I was screaming at the 911 operator that my baby wasn’t breathing. As the operator was trying to calm me down she started to breathe again. By this time my husband was holding Piper and she looked better. I told the operator to cancel the ambulance and we would be taking her to Sick Kids right away. We packed our stuff and were on our way.

When we arrived at Sick Kids they took her in right away and hooked her up to monitors. Her heart rate was jumping around, going from a low 70-80 bps to a high 170 bps. They were obviously concerned thinking that she could have been choking on stomach acid since she has known acid reflux. While we were there she stopped breathing again, about 8 doctors and nurses came rushing in. I lost it. I don’t remember much other than falling back into the chair beside the bed and crying. One of the nurses came over and was comforting me. Just as she did at home she started to breathe again but this time the medical professionals saw it. They knew it was more than her choking.

They decided to put her on a feeding tube to drain the acid from her stomach just in case. They also hooked her up to an IV and the respiratory team came in to check her breathing. I was told that she needed to be admitted.

Over the next couple of days Piper was visited by all the specialists that I’d been waiting months to see. She also had all the tests performed that she was waiting for such as her MRI, EEG and other blood tests.

Everything was normal on Piper except for her EEG. She was having spasms constantly in her brain that the neurologist said looked like infantile spasms. Infantile spasms will occur almost constantly in small children and although they aren’t harming the brain they can prevent children from learning properly. There is a specific medication that is very successful in eliminating these spasms but one side affect is that Piper could possibly get permanent tunnel vision. It was good and bad news. We also thought maybe this would help Piper with her development. My husband and I had to weigh the pros and cons of the medication and decide whether we wanted to have her on it or not. In the meantime they were going to hook her up to another EEG that was longer ( a typical EEG is 30 minute) to try and catch her having one of her episodes that brought us into the hospital.

We waited and waited and we finally caught one of the episodes overnight on the EEG. On Thursday morning the neurologist came in and spoke to us about what he saw. He said that the episodes were definitely seizures and they could be controlled with medication. Good news. The bad news? He no longer thought that she was having infantile spasms. Instead he explained that he saw spikes on Pipers EEG that were not very common. What this means is that her brain is in an almost constant state of disorganization. This makes it harder for her to learn. He also told us that there is not a medication that has been shown to fix this. So what does this mean? We would put Piper on an anti-seizure medication for her physical seizures but there was nothing we could do about her disorganized brain. I felt like I was going to throw up. What does this mean for Piper? He said he didn’t know. NICE, more not knowing!

Piper started her medication on Thursday evening and was released from the hospital on Saturday morning. Since she’s been home she's been her normal self and she hasn’t had one of the seizures where she stares and stops breathing. She sometimes has little spasms where her arms will raise up in front of her, go down and then go back up again. We think they look like infantile spasms (because we looked at videos of it on YouTube) so we called the neurologist to let him know. We are going back to Sick Kids tomorrow for a follow up EEG. Hoping we get good news and there is some kind of medication or therapy for Piper.

The sad thing about all this is that Piper is no better than she was before. Yes, she had all the tests performed and saw all the doctors that I have been hounding over the last few months but she now has epilepsy. The thing is this epilepsy is not causing her hypotonia and vice versa. We are no closer to finding out what is causing her hypotonia, we just have epilepsy added to the things my beautiful daughter has to deal with. What went wrong? Why is she going through this? Why her? Why not me?

Saturday, August 20, 2011

A Morning of Appointments

Yesterday Piper had two appointments downtown. We had a genetics appointment at 9am and a cardiologist appointment at noon.

Our genetics appointment was at Sick Kids and it went well. The doctor ordered a few more tests which consisted of such genetic conditions as Zellweger syndrome (VERY BAD!) and Pompe disease (VERY BAD AS WELL!). Actually now that we are in the really rare genetics conditions its all bad. We don’t want Piper to have any of the conditions that she is tested for from now on. Most times these conditions result in death and there are no cures for any of them. We received the results from her last round of testing that neurology ordered and they were all good. Phew! Now I just have to wait 6 weeks to get the results of these other tests. FUN! He was also positive about her cognitive ability. She was smiling and interacting with him as well as playing with a toy. It was nice to hear him say that he noticed a big difference in her.

The doctor at genetics was really confident that the fMRI (functional MRI) that neurology suggested may be important in deciphering what is causing Pipers hypotonia. An fMRI is a newer technology in the MRI world. It not only looks at an image of the brain but can determine the brains functioning by looking at the blood flow in different areas. Blood flow is related to neural activity so we will be able to see if everything is working like it should in Pipers brain. This is the test that I am really worried about. Since neurology told me that they think Pipers problem stems from her brain I have a feeling that they may find something. This “something” that I am waiting for them to find is probably not good. I’m preparing myself for the worst but yes, trying to remain hopeful in the interim. We don’t have a date yet for the fMRI but the appointment relies on anesthesiology contacting me and making an appointment first. She will need to be put under for the test so they need to look at her health, breathing ecetera.

Our cardiology appointment was next and it was at St. Michaels. Piper had an ECG done when we arrived and we met with a wonderful doctor, Dr. Hann. She was very nice and you could tell she was sympathetic. I love when I meet doctors like this who seem like they care about and enjoy their job. Anyway, she listened to Pipers heart and told me that no the ECG she has a perfect heartbeat. Since Pompe disease has to do with the heart she told me it was very unlikely that the blood tests would come back positive for that. What a relief that was!

Next Piper had a Doppler Colour Flow ECG. It is basically an ultrasound of the heart and you can see different colours which represent the blood flow towards and away from the ultrasound device. It was really neat but it took forever. Piper fell asleep during the ultrasound, she was such a good girl!

After looking at the results from that Dr. Hann told me that everything looked great in Pipers heart. She did have one slight concern about her heart and it was that Piper has PDA (Patent Ductus Arteriosus). This is a very minute condition that happens with some babies. Before a baby is born there is a small vein that connects the two main arteries in the heart. This is because the mom does most of the work for the heart. After the baby is born (within minutes and up to a few days) the vein is supposed to close to allow the heart to work on its own. Pipers hasn’t done that yet. It has nothing to do with her hypotonia and the doctor thinks it will just take hers longer to close. Otherwise she said there is no precautions that she needs to take because hers is very very tiny. Great news!

I’m pretty hopeful right now but again I’m worried about the fMRI and what it may reveal. Piper is doing a lot better cognitively. She loves to smile, laugh and make noises. She reaches for toys and really interacts with people. Its a relief to see her little personality coming out but I do wish all these problems didn’t have to loom above me. Only time will tell I guess.

Thursday, August 18, 2011

Update on Progress

It’s been a couple weeks since I’ve written on the blog. We recently had our neurology appointment on August 2nd at the Hospital for Sick Children. Nothing really transpired from the appointment. We did wait there for a few hours while several doctors discussed Pipers situation and went over her various tests. Their conclusion was that the hypotonia was being causes in her brain. It wasn’t it her muscles or her spine. They also thought that what she has was there from conception, meaning that they think this is a genetic condition causing the hypotonia. It was nothing that I did or could have changed because she has always been this way. They said she is going to have developmental delays and other problems throughout her life but doctors never really know. I mean they can guess and assume what Piper will be like but they just have no idea. I’m trying to maintain my hope and prove those doctors wrong.

Next steps? We are waiting for an appointment for another MRI and we are going back to genetics. I was really surprised about how quickly we got back into genetics. After the coordinator phoned me and said she had an appointment for November I protested stating that I couldn’t wait that long to know what is wrong with my child! She called back a couple of days later and we are going in to see them tomorrow morning. We are also scheduled to see cardiology tomorrow at noon, so this should be interesting.

As far as Pipers development its been going well. She is getting stronger with her head control and the PT and OT are now working on her abdominal muscles to help her sit. The PT that we have is quite amazing with Piper and very knowledgeable about programs and services in the city. On request of the PT I am filling out a registration for the Easter Seals of Canada. I’m hoping to get some funding to be able to get Piper a car seat soon. The car seats can run about $4000 to $5000 so it would be great to get it paid for by Easter Seals! She is outgrowing her infant car seat and I don’t know if a store bought car seat will give her enough support. I have a representative coming in in the next two weeks to show me the seats and I can even try them in my car to see if they would be a good fit. In the meantime I think I might try Piper in Fynch’s car seat to see if it would work for her. Of course I’d have to turn it around and recline it, but you never know.

For now the neurologists have said that I am doing everything I can do for Piper. They suggest keeping up with all of her therapies and waiting to see how she progresses. Although they are time consuming I know they are the best thing for Piper. I really do rely on other people to tell me how she is improving though. Since I am around her every day it’s hard to judge how she is doing. The various therapists, family and friends are the ones that give me supportive words letting me know that she is doing better. I’m hoping for more progress within the next month!

Tuesday, July 26, 2011

The End of Hope

Last week we had a physiotherapist come to our house from the CCAC. Our Occupational Therapist thought it would be a good idea to add physiotherapy because Piper is not making very good progress at this time. Honestly she just turned 9 months old and she still can’t really hold her head up and she definitely can’t do much else. So in addition to the Osteopath, MEDEK physiotherapist and Occupational therapist we’ve added this government funded Physiotherapist.

The girl who came was very friendly and showed me an exercise that I should be doing with Piper. Compared to the MEDEK Physiotherapy it’s very passive. I place Piper sitting on my lap leaning against my stomach and move from side to side. It’s very simple but I really don’t see the immediate benefits.

What was disturbing about the visit was the conversation we had during it. She asked me if I’d filled out some papers to get funding under the “Children With Severe Disabilities” act. I had the papers but never filled them out because a) its 20 pages long and is very labour intensive b) it’s income dependent and I’m not thinking that we would fall into the range to get the funding and c) I haven’t categorized Piper as having a SEVERE disability.

I asked her why I would need this and she explained that Piper should have a different stroller. I told her that Pipers stroller was fine and she said the stroller may help her until she needs a stander. A stander? What the heck is that? She wrote down the name of the stroller and I said I would look at it.

Once she left I looked up the stroller and it looks like a wheelchair. I lost it. Getting a special stroller for Piper will just acknowledge the fact that there is something wrong with my child. It will make people look at her more than they already do. Why would I do that to her, to me? I looked up a stander and then cried. I put a picture of it on the page so you can see the stroller and the contraption called a stander. Is this what Pipers life will be like? Would she ever walk? Will she be 20 and me still having to carry her around? The not knowing is killing me. It makes me want to pull out my hair in frustration!!!

I asked the pediatrician last week about the stroller and the stander and whether she thought that she needed them. Her answer was that she doesn’t know what Piper will need, nobody does. If I don’t feel that she needs the stroller then I don’t have to get it, but I may need to cross that bridge when I get there.

When Piper was 2 weeks old I thought “she’ll be better by 3 months”. When she was 3 months I thought “she’ll be better by 5 months. When Piper turned 5 months old the only thing that kept me going was the thought that by 9 months she would be holding her head up. When the milestones all came and she still couldn’t hold her head up I lost faith. I am at the end of my leash when it comes to hope. I don’t know if I can do it anymore. I have spent the last 9 months hoping and working and worrying for this precious child. What am I supposed to do? This is something that consumes me 24/7. This isn’t something that will get better with time or go away for a few minutes. Where do I go from here? How can I go back to work in a few months with a child who I worry about all the time? Things and priorities are different. I can hardly function at home, what about at the office?

We have a neurology appointment on August 2nd. Although I wait with bated breath for the visit I know in my heart that there will be no answers on August 2nd. This will not end for our family. We will never know what Piper will be like or what to expect from day to day. That false acceptance is laden with a small amount of hope that remains when every 23rd of the month arrives. As it arrives the hope gets smaller and smaller. What happens when there is no hope left?

Tuesday, July 5, 2011

Genetically Speaking

As I mentioned in an earlier post, when Piper was just a few days old she had a multitude of tests done on her. A major category of tests was genetics. Hypotonia is a symptom of almost every genetic disorder that affects humans. All the way from the most common, such as Down Syndrome to the rare, such as Spinal Muscular Atrophy (SMA).

I’ve definitely learned a lot about genetic disorders and most of them I hadn’t heard of before. When a doctor would tell me that they were going to test for a disorder or syndrome I would sneak out of the ICU and Google it. I would then call my husband in tears over the possibility of our daughter having one of these syndromes. He would subsequently get upset and it would be a big mess. Then after waiting for a couple of weeks I’d sit in front of the doctor for the results. Was she smiling? Did she look nervous? Why does she keep talking? JUST LET ME KNOW THE RESULTS!

So thankfully all the tests performed at St. Michaels were okay. No need to worry about the “common” genetic disorders. Now we get a referral to the Department of Metabolic Genetics at The Hospital for Sick Children. Now we get into the serious and “rare” genetic disorders.

Our appointment was at the beginning of May and it was quite the experience. I don’t know how a parent could walk out of a genetics appointment feeling good because they measure, look and criticize your child's features the whole time. Detailed questions are asked about yourself, your family and their offspring. We were even asked the obvious “Is it possible that your guys are related? You aren’t brother and sister are you?” Ummmmmm, NO! I think I would know if he was my brother and maybe we would have mentioned that BEFORE the genetics appointment? Gross!

When they looked at Piper the doctor and the student were vocalizing their concerns with her features. They mentioned that perhaps her ears were lower than normal a slight bit. They asked why she was so pale and whether it runs in the family. If anyone knows me they know I’m pale, very pale. It’s quite a touchy subject with me and not only has Piper inherited my skin tone but my son has as well. Lastly they looked at her eyes and then mine, then my husbands, then back at Pipers. He mentioned that her eyes kind of went up at the corners then continued to talk. After about ten minutes he all of a sudden looks back at me and says, “No, I think she has Mums eyes”. If you look at a baby picture of me and look at Piper they are exact.

That whole procedure was exhausting and nerve-wracking! They really didn’t find any dimorphic features that would indicate a specific genetic disorder. This was a relief. The doctor told me that he was going to test for a couple of rare disorders and started to tell me which ones. I stopped him and told him that first of all we didn’t want to know what he was testing for. I knew that Bay and I would just go home and Google every one of them and worry ourselves. Second, I told him that ideally I didn’t want to come back if it wasn’t necessary. I wanted him to test for every possible genetic disorder he thought Piper may have.

We were sent to ambulatory services where they took five large viles of blood from my thirteen pound baby! It was horrible to see but they were taking so much because I signed a waiver to allow them to bank Pipers DNA. This way she would only have her blood taken once and we could test over and over.

It was almost two months later and I hadn’t heard anything about the results. I started calling genetics and left two messages. This brings us to today. I finally received a call back from the doctor and the results are back. Everything is negative (normal) that they can see with her microarray. Microarray is where they look on each one of Pipers chromosomes and make sure all the little pieces are there and that they aren’t damaged. She was also tested for Spinal Muscular Atrophy (SMA) and Myotonic Dystrophy (a form of muscular dystrophy) and they were both negative. So all we have left is to go back to genetics and see what our next steps are.

If this is genetic what are our chances of ever finding out what the cause is for Pipers hypotonia? Well, there are an estimated 20,000 to 35,000 human genomes but there are suspected to be thousands more that we don’t know of due to technology constraints. Within each of those human genomes contains vast regions of DNA, the function of which, if any, remains unknown. In fact this “unknown” region is estimated to be about 97% of the human genome size.

So you can see that if it is a genetic disorder it may never be found in Piper. This is what doctors tend to refer to as Benign Congenital Hypotonia. It’s encouraging and discouraging at the same time. There is hope left in the unknown that she will just outgrow this one day and break down barriers. But there is also a sense of uncertainty because there isn't a basis how our little girl will progress through life. We’ll have to wait and see until the next appointment.

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 or

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 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 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.

Monday, May 16, 2011

My Daughter is Different...

I”m starting this blog not only as personal therapy but to possibly help other Moms out there who may be going through what I have experienced.

I have a beautiful 3 (soon to be 4) year old boy named Fynch and a gorgeous 6 month old daughter named Piper. Until recently I guess you could say I was a pretty normal mom. I went thorough my pregnancy with my son without a hitch, went into labour two days after my due date naturally and gave birth in a hospital without meds (yes I am crazy). With the birth of our little girl Piper that all changed...

Piper was two weeks overdue when we decided it was time to intervene. After being induced and having an epidural this time around (which was like HEAVEN!) Piper was born! She was a beautiful little girl with lots of hair and streaks of blonde highlights running throughout her hair. When I brought her home a few hours later I knew something was different with her. She didn’t cry and wanted to sleep all the time. I thought it was just her being tired from the birth but she wouldn’t eat either. I kept trying to breastfeed her to no avail. When my midwife came to visit the next day she told me to go and get some formula so I could finger tube feed her. She still would eat that much.

The day after I noticed her getting a yellow. Obviously jaundice but I didn’t think to much of it. The next day my midwife came back and was alarmed. I was told to go to the hospital so I could get Pipers blood tested to make sure her bilirubin levels weren’t too high.

That day we were sent to the hospital, that awful day, was the beginning of my grief and my sadness. That day at the hospital took away the joy I felt over my newborn baby girl and turned it into anguish and fear that still exists today.

I think I’m going to stop here as this could get long and I don’t want to bore any readers with any more yet. I do look forward to telling my experience as a Mom and again do hope this will help other Mommies out there!