Friday, November 28, 2008
It has been a really hard week. We did not expect Zoe to be in so much constant pain and that was extremely difficult to watch and feel like we could not do anything to stop it.
But at least now we are home and hopefully she will start feeling better soon.
Monday, November 24, 2008
Just wanted to let people know that Zoe was admitted to the hospital yesterday. We are hoping to make it a short stay but first we have to figure out what is going on. They are now thinking that the pneumonia is a symptom of something else going on rather than the problem. We'll see.
Saturday, November 22, 2008
Showing off her arm boards that we taped in place so she can not pull the tube out when she is in her crib. Check out that double chin and those teeth!
Our respite worker, Riann, has been helping us out through this. It has made such a difference to have some help. Gavin was unable to be at the doctor's on Friday so it was great to have someone there to help me. Also, Riann came over Friday morning so I could sleep in until 9 before getting up to go to the doctor's. It was great to be somewhat rested before dealing with the doctor visit. It is amazing how much more rational (and how much less of a b$%ch) I am when I get a little sleep!
Thursday, November 20, 2008
Gavin took off of work today and I will take off tomorrow. We were relieved that her fever seemed to be going away but by this afternoon she was running a fever again. We do not want to go back to the hospital for IV meds since this would mean Zoe would require a central line in order to get the meds since she is such a hard stick. Since we know other 1P36 kids who have constant lung infections we are holding our breath and hoping that this is not the start of a bunch of infections. The doctor in the emergency room brought up the fact that the pneumonia could be partly caused by or made worse by Zoe's choking on her food. Zoe could be aspirating her food into her lungs. Since Zoe has never had pneumonia before, this is unlikely. However, if Zoe continues to get infections then we will look into this.
It is heart breaking hearing Zoe cough and I can't stand forcing the meds into her mouth. She has gotten very clever and has figured out how to throw up right after you give the med so we have figured out ways to distract her.
Going through all of this has made me appreciate a few things in my life. Number one is how amazing Zoe truly is. She must be in so much pain right now but she is still such a trooper. She was upset with the IV and blood draw attempts but she did so well with it all. On the way home (we ended up having to take the subway and bus home at midnight and we laughed since it was in middle of a snowstorm- I am not sure the doctors would approve of it but we had no choice since we did not have her car seat at the hospital to take a taxi home) Zoe just played quietly and fell asleep. She really is such an easygoing child. We worry that doctors overlook her pain since she does seem to have such a high pain threshold. But since we know her so well, we can advocate for her when know she is not herself.
One of the other things it made me appreciate was Zoe's communication skills. This was the first time that Zoe was in distress and could sign what she wanted/needed. She kept signing "mommy more" or "daddy more" when she wanted us to just snuggle her. She also signs a very firm "no" and "all done" when we try to feed her right now. It is so much easier now that she can tell us what she wants. We can see how much less frustrated she gets since she can communicate her needs.
Another thing I appreciated last night (and always appreciate) is the great partnership I have with Gavin. He and I were always on the same page. We advocate for Zoe in the same way and we both feel comfortable and confident in questioning the doctors. Having children puts a strain on any relationship. Having a child with special needs puts even more strain because you are more sleep deprived, worried about different things, and for us there is a huge loss in income since we are unable to work full time. On average, it takes about 20 hours a week to coordinate Zoe's appointments and take her to the doctors. That does not include the extra time it takes to feed her or do her therapy. And that does not include when she is sick and it takes much longer. 20 hours is a part time job! No wonder we hardly ever have time to spend alone as a couple! Even though Gavin and I are exhausted right now and very worried about Zoe, we are always still on the same page. I just can't imagine if I didn't have someone by my side going through all of this.
Anyway, I have to take Zoe back to the doctor tomorrow and hopefully all is well. As soon as this cough clears, I look forward to getting some sleep. It is incredibly hard to sleep when your child is struggling to breathe. Since Zoe does not have the muscle tone of a typical 21 month old, she is not able to have productive coughs which makes it harder for her to clear her throat and initiate breathing after a coughing fit.
I hope she gets her appetite back soon. Last time she was measured she had gained 6 ounces in the past three months. Not bad since she has been sick for the past two months. More importantly, we have to be sure she is staying hydrated.
Saturday, November 8, 2008
Our friend "Auntie" Katie slept over last night so she could help us out today. First, she got up with Zoe when she woke up which meant Gavin and I got to stay in bed together! This is the very first time we have ever been able to sleep in like this. I, of course, did not sleep much but it was nice to lay in bed. Zoe has an EEG (electroencephalography is the measurement of electrical activity produced by the brain as recorded from electrodes placed on the scalp) scheduled for Tuesday to check for seizures. Zoe woke up with a coughing fit at 6am and then after that I was thinking about her appointment on Tuesday so I found it hard to relax and fall back to sleep. Not to mention I am just not used to sleeping in any more. After we rolled out of bed at 10am (can you imagine!), we went to the eye doctor (both of us needed to be seen) and then out for a relaxing lunch. We returned to a very happy child and a clean house. We are so grateful for Katie helping us out like this. Zoe has been sick for the past eight weeks so we have had a lot of doctors appointments and sleepless nights. So the extra rest and relaxation was wonderful. To say we are desperate for help right now would be an understatement. We do not have any family in the area so we are completely on our own and this is the first time we had help like this. As a bonus, Gavin and I realized on the way home from lunch that today is our anniversary. So, it is nice that we got to spend a nice day together as a couple.
Saturday, November 1, 2008
Zoe is doing really well and we are very proud of all of her milestones. She is now sitting for twenty seconds independently, rolling from her tummy to her back and her back to her sides, and able to stand with a lot of support. Zoe is now grasping toys and bringing them to her mouth to chew on. She enjoys wiggling around on the floor, rolling from side to side, and getting herself to her toys. Zoe's cognitive skills seem to be ahead of her motor skills as seen by her advance in communication skills such as the sign language and her understanding of cause and effect. It is a bit tricky to find toys that Zoe can physically play with that still keep her interested since she is now bored with baby toys that are easy to grasp. Here are a few ideas of some toys that would be easy for Zoe to manipulate but still keep her interest:
good old fashioned wood blocks- who doesn't love these?
Little Tikes tap-a-tune piano http://www.littletikes.com/toys/baby-tap-a-tune-piano.aspx
Little Tikes Discover Sounds Tool Box http://www.amazon.com/Little-Tikes-DiscoverSounds-Tool-Box/dp/B000067PUP
Tiny Love Activity Ball http://www.tinylove.com/toy.aspx?toyId=30
Tiny Love Bead and Blossom http://www.tinylove.com/toy.aspx?toyId=176
Signing Time Videos- we already have the Baby Signing time videos and Signing Time Vol one is a repeat, so any of the videos Volume two and past that would be great. Also, they have signing time board books http://www.signingtime.com/
There is a fiber optics therapy toy that Zoe really loves. It is called StarLight and can be found at http://www.flaghouse.ca/itemdy00.asp?T1=37656
Playskool Busy Basics Busy Poppin' Pals http://www.hasbro.com/playskool/default.cfm?page=browse&product_id=18095
Lamaze First Mirror http://www.liveandlearn.com/lamaze/firstmirror.html
We read to Zoe every day- so books are always great. Specifically, "And Tango Makes Three" is a cute book we read recently http://www.amazon.com/Tango-Makes-Three-Peter-Parnell/dp/0689878451
Clothes- any and all clothes are more than welcome since Zoe has outgrown most of her clothes recently. She is currently wearing size 18months (can you believe it!) so perhaps 24 months and up would be a good size. We do not look down on used clothes (or toys) so feel free to pass along your children's old cast offs or hit a thrift store.
We will be setting up a RDSP (Registered Disability Savings Plan) as soon as they are available for Zoe. We would love if anyone wants to help contribute to it (sorry contributions to Zoe's RDSP are not tax-deductible but the government does match some of the money you put in, so every dollar you put in is worth two or three dollars plus interest). Here is a link with more info: http://rdsp.wordpress.com/
Family gift idea- we really want to visit Edmonton next year but with Gavin stopping work in January, our funds are getting tighter. If anyone wants to donate towards airline tickets that would be wonderful.
All of the toys can be found at any toy store except the StarLight Therapy toy. Cheaper versions can sometimes be found elsewhere, but Zoe has torn out the fiber optic bands because they were not attached as firmly as the one from Flaghouse.
We hope that people find this list to be helpful. We are not, in any way, trying to tell you what to get Zoe (or saying that you need to get her a gift at all). We just recognize that buying a gift for Zoe is a little different than buying a gift for a typical almost 2 year old. All of the toys we put on this list have therapy goals in mind. With Zoe's visual impairment, it is important to use toys that are not overstimulating visually but are brightly colored and attract her attention. Just writing this list out was a little sad for me because I look at the toys I would get for a typical 2 year old and those are way beyond what Zoe can do right now. A close relative mentioned going into a toy store and seeing toys that Zoe would enjoy but noticing the age range on them and becoming sad and needing to leave the store. We know exactly how this feels.
But then we focus on the fact that this time last year Zoe was wearing 3 month size clothing and just starting to reach for toys. Now, she has such a good grip that we have to teach her to be gentle with our faces and hair. It is amazing how much she has grown in the last year.
Zoe showing off her pumpkin hand.
The quality of the video is a bit off but we are going to post them for now and then try to fix them later. Zoe's sign for "more" has become much clearer in the past few weeks and she is starting to get quite insistent when she wants more of something.