Wednesday, November 30, 2011

Piper's First Turkey Day

Thursday was Piper's first Thanksgiving. In the past Mark and I hosted Thanksgiving while my parents hosted Christmas. As it will be Piper's first Christmas we decided to switch hosting days. So after a visit from Loren, we made our way over to my parents for Thanksgiving. 

This year we have a lot to be thankful for. The last two thanksgivings were spent mourning over two pregnancy losses. It was such a wonderful day to be thankful to have Piper as part of our family. As always my mother made too much food, but all of it was delicious. Because of what Mark, I and our families have been through this past year it was nice just to enjoy each others company and really appreciate life and what we have.
I'm really looking forward to next year's Thanksgiving where Piper will be able to enjoy the food, albeit in a pureed form. It's better then just drinking breast milk 24/7. I hope you enjoy the photos from our first thanksgiving as a happy family.

Monday, November 28, 2011

If you just smile…

Every parent gets excited when their child reaches certain firsts. The first time they hold their head up, crawl, walk, smile etc. I feel as a parent of a child with DS those first milestones mean so much more. Our developmental interventionist asked us if Piper was smiling yet. At first it was hard to differentiate between a gas smile and a genuine smile. I am so pleased to say that I now know the difference and Piper is smiling. I don’t know exactly when her first smile was but I have been able to see many more since. Every time she gives us a cheeky little smile it warms us up inside, knowing that right now she is a very happy baby.

Tuesday, November 22, 2011

Physical Therapy

We had our first Early Intervention physical therapy session last week. It was great to finally be meeting the person who Piper and I will get to work with in helping Piper develop. She assessed Piper's abilities and gave us some activities to work on through out the day.

So now both my and Piper's day includes working on strengthening her neck muscles so she can hold up her head on her own.....
.........Working in the prayer position on her side and with my hands supporting her shoulders, so she can develop her arm muscles so she will be able to find and hold her hands together and ultimately hold her toys.....

She even showed me some baby massage techniques that are especially helpful for babies with Down Syndrome. Piper gets all the attention!

Wednesday, November 16, 2011

Thanks for the Support

When I started this blog, I never thought it would become something big. I was using it as a tool to express what I was thinking and going through on this journey with Piper. I never expected that I would actually have followers. It has been wonderful to speak to so many different people about their experiences and read other blogs. It's been comforting to know that I'm not alone and that what Piper does or doesn't do is OK. So for that encouragement I want to thank those people who are now in my life and those who were already in my life, for their support of my family on this journey.

Thursday, November 10, 2011

La Leche

Before Piper's birth I had decided that I was going to breast feed. I knew that breast milk was best for babies, it was just the natural choice. I'm certinly not against formula and from time to time have supplimented however I have no hang-ups about breast feeding so wanted to give it my best shot. When Piper was born, she had the natural instinct to suck like any baby, however she would suck in such a strange way that she struggled to latch on properly. While in the hospital I was visited by the lactation specialist who showed me some techniques that would help Piper latch on properly. Of course when the consultant was present Piper did great but sods law dictated that as soon as she left Piper continued to struggle.

Once we left the hospital I found pumping and bottle feeding the breast milk the easiest as Piper continued to struggle to latch on. Soon my days became consumed with pumping then feeding then writing down how much and when she fed and then changing diapers. It started to feel redundant to pump then feed. I felt like I a doing twice the work.

So today I went to my first La Leche League meeting, I really wished I had gone before Piper was born. It was helpful to hear from other mothers what their experiences have been like so far. It was also a chance for me to ask questions. I left feeling a new sense of "I can do this" and I wished I could go back in time and start from the beginning with Piper and try the new techniques I learned from other mothers. Needless to say I went home and decided enough with the pump (well almost......I still pump at night). Piper and I would do what is natural. I was going to bond with my daughter through breast feeding. Both of us will learn how to do this together.

Even though this posting is all about breast feeding, I took this picture and video of Piper just before we left. I was so proud that she was able to hold the bottle all by herself (well...kind of...she's propping up the bottle in the video...a little to early for grasping it).

Monday, November 7, 2011

The heart of the matter

On Friday I attended a new parent coffee, for parents of children with Down Syndrome. I didn't know what to expect from this coffee, as I'm new to the whole "group" setting. I guess I was just hoping to meet some parents who have been through what Mark and I are going through. The coffee was hosted by a mother who as three children, 6, 3 and 6 months. Her eldest, who has Down Syndrome is in the local Kindergarten and is doing great. She had commented how tiny her daughter was at Piper's age her 6-month-old daughter is wearing the clothes her 6 year old wore when she was 2 years old. Another mother has two teenage boys one of whom has Down Syndrome. The stories shared were worrying to a new mother, i.e. me! Experiences seemed varied but one child wasn't potty trained until he was 11 years old. I couldn't imagine changing Piper's diapers when she is 11 years old but these are things that are reality. Not that I think that every person with Down Syndrome will need to wear diapers until they're 11 and not that I think it is really a major deal in the grand scheme of things but this just highlights that nothing is a given in life.

There was another mother who was also new to the group; she brought her fourth child, only four months old. She shared that in two weeks he will be going for open-heart surgery. That is the current biggest fear that Mark and I have. When Piper was born she saw a Pediatric Cardiologist who told us that Piper has a VSD (Ventricular Septal Defect), which is a hole in the heart between the left and right ventricles. He told us that it was a very small hole and that he was hopeful that it would heal itself but it is still our biggest fear. After meeting the woman whose child is having open-heart surgery and Piper's follow-up Cardiologist appointment coming up soon both Mark and I worry about the possibility that Piper could need to have surgery. She is our precious little Piper and we couldn't imagine her going through this, not to mention the toll it would take on us. Perhaps that's selfish of us but I feel like we've earned that. So fingers crossed (Mark will be praying as he has been feeling recently that there is a god) that Piper doesn’t need surgery and that everything goes well for the little boy and his family that I met on Friday.

Early Intervention

By now we have had our Early Intervention assessment, the umbrella term that promises regular interventions from occupational therapy, physiotherapy, speech and language therapy, therapy therapy....well you get the idea.  Both Mark and I had no expectations about what the assessment would entail but had the general understanding that it's never too early too start with....well....therapy. When I received the call to set up the appointment I was surprised and impressed how quickly this was all happening but when I learned that a physical therapist and a speech therapist would be coming I couldn't help but wonder what on earth is the speech therapist going to do with a 3 week old. The only noises she makes are grunting noises, birds noises and cries and it's not like she'll be talking or struggling to say yellow or something similar so  what could a speech therapist possibly asses piper on.......

Well the day came and the two very nice therapists came to our house. The physical therapist asked us to get a blanket and her rattles. I was so glad we had rattles, I had no idea we should have been stimulating Piper with rattles since so far she spends most of her time eating, pooping and sleeping (not necessarily in that order). I was so proud of Piper as she was showing the therapist how well she can lift her head and how strong her arms are. So long story short, now Piper and I have set tummy time on a daily basis where we work on turning and lifting her head (with the correct posture of course).