Thursday, September 3, 2015
On that note, Piper reached an inchstone recently. She can now stand unsupported against the couch. This is awesome in two ways, one is that Piper does not like being let go of. She gets freaked out and has a panic attack. Two is that Piper has not had the strength to stay standing for more than a couple of minutes in the past. At almost 5 years old, this is the inchstone she has achieved. It's the simple act of standing while supporting yourself for more than a few minutes and she's achieved it! Go Piper!
I am looking forward to the next inchstone. I don't know what it will be as I don't have a manual on my daughter. I have no one to compare her to. I don't even know how this happened, or what went wrong to make her this way. I wish I did. I wish I had a book on Piper's inchstones. That would make me feel better wouldn't it? The book would tell me that by 6 years she would talk, she would say Mommy, tell me that she loves me. By 7 years she would walk, run by 9 and bound towards me...wrap her arms around me in an embrace. But I know this isn't true. There is no book on Piper. There is no book on life. I must pull up my sleeves and do the best that I can everyday. There is no reason this happened to my beautiful daughter, our family. It just is. This, this may be the most depressing thought of all. Because that means that there is just nothing. And that nothing is what gets me by. Think of nothing. Feel nothing. Remain. Static.
Moments like this inchstone bring me out of my nothing and make me happy. Make me realize that there is something. But I know it won't stay. Something will be gone soon and the nothing will fill me again. I hope the next inchstone comes soon...
Wednesday, October 16, 2013
Tuesday, September 17, 2013
Wednesday, March 21, 2012
A couple of weeks ago Piper had an overnight EEG at Sick Kids. It was initiated because we questioned some unusual movements she was making. We weren’t sure whether they were seizures or not and the only way to tell was to have an EEG. So we went in on the Monday and Piper was out by 1pm on the Tuesday. She did all the movements that I questioned so I was happy with the session overall.
What happened next was surprising. The resident neurologist had come to my husband and said the initial findings were that the movements that Piper was having were not seizures. Phew, that was a relief. But he said he saw something else in her EEG. He said that her EEG was normal for a child her age. What? What happened to her confused brain? What happened to her hypsarythmia? My husband told me the news while I was at work and I started to cry. What was this feeling? It was something so unusual? Relief? Happiness? Renewed hope? I immediately caught my emotions and came back to reality. After 16 months of bad news it was only natural. I was hesitant and started questioning the validity of the EEG and this doctor’s opinion. As well I didn’t know what this meant. So I decided to wait until our appointment with the neurologist who had been following Piper on March 19. After all, what the resident doctor said is that they just looked at it quickly. I talked myself down and back to “reality”.
So on Monday we went to Sick Kids and met with the neurologist. HE confirmed it…Pipers EEG was normal, her hypsarythmia had disappeared. He said this happily and with a smile. Of course I was happy but I didn’t know what this meant. A lot of mentally disabled children have normal EEGs, so what did this mean for Piper? He said it was overall great news and that it would make it easier for Piper to learn, but we still didn’t know what she would be like in the future.
Next steps are to start to wean Piper off of the Vigabitrin over a 6 week period. We’ll then repeat the EEG at that time to see if her EEG comes out normal again. In the meantime we are starting up an intense 6 weeks of CME physio again hopeful that we will see some progress. I’ll keep you updated over the next few weeks on progress.
For me it’s given a little more hope that things CAN change. The brain is an amazing thing and no one really knows how it works or how much it can change. I’m still guarded, but I think that is natural considering all the crap we’ve been through over the last year. For now I’m going to remain hopeful and try to take time to enjoy a bit of good news…even if I can only allow myself 2 minutes of it.
Sunday, January 15, 2012
Another New Year and a whole lot of changes. This past week I went back to work after 14 ½ months off. Going back to work after maternity leave is bitter sweet and never easy for any mom. For me it was confusing and a little heartbreaking. With my son I went back and felt rejuvenated like I could conquer the world. I welcomed the conversation with adults, a lunch hour filled with ME and bathroom breaks whenever I wanted. I didn’t feel that this week. Instead I cried at 3am the night before returning to work, thought of only my daughter the whole day and despised sitting at my computer. I especially hated the “WELCOME BACK’s” because they were cheery. Now this has nothing to do with the people I work with, in fact all are very friendly and genuinely asked how Piper was doing. It was solely me and this is why.When we leave work to have a baby all is joyful, people bid you well and wait for the birth announcement to come out. Your own expectations are heightened and you are filled with happiness. When I turned around and waved goodbye to my job and coworkers I was on cloud nine. Nothing could bring me down, but it did. Funny how returning to this environment just reminds me of that day. The smiles and the joy are fresh in my mind. The happiness, oh, the happiness! My life was “normal” then and I’m now reminded that it’s not anymore...it’s never going to be the same again. I’m trying to fit into my OLD life but it’s not working. I’m not the same person I was. I never will be.
Friday, November 25, 2011
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
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.