A quick catch-up!

Whoa, life is just flying by these days. The kids, my sister and I will be packing up the car in about 4 weeks and head West. I am excited, nervous, anxious and sad all at once. Excited to be near my family again, for my kids to know their Aunts, Uncles, cousins and Grandparents and to be putting down roots. Nervous for almost everything to change, anxious for all that change and the unknown and sad to be leaving so many great people and places! This next "chapter" really is going to be more like a "volume" for us, I feel.

We have been really, really blessed. Things are falling into place before our eyes. We don't have a house yet but for some reason I am not freaked out about that, just yet. We have an offer on our house and these days that is HUGE!!! I know I am just not grateful enough. It's such a relief.

Since Norah was born I have felt the hand of God in my life more times than I can count. In the hospital, because of her difficulty to feed, squeeky cry, floppiness and a few other things it was suggested to us that we have some genetic testing done. Just two weeks later she was diagnosed with Prader-Willi Syndrome. Of course we were overwhelmed with the diagnosis as well as all the information we received about it. Colin has been a rock! I still think about it often, every day and sometimes it is hard and other times it is not. I know someday it won't be in the fore front of my mind 80% of the time. Currently there is no cure.

Norah's feedings have gotten much better for most of the time. When she was first born she was only drinking 2 ounces and it was taking about an hour. Now she often drinks 3 1/2 - 4 ounces in 30 minutes. I am so grateful for this! She is up to 9+ pounds now. We have been going to physical therapy once a week, seeing the geneticist and endocrinologist. She will have a sleep study the end of the month and if everything looks clear they will start her on growth hormones to help with the low muscle tone and help her grow at a more typical rate. This is the current and best treatment for PWS.

With the bad comes the good. Norah is VERY content, easy going and happy. She emits a very special "vibe" that even those who do not know that she has PWS comment on. I get to keep my baby a baby longer than usual because of her slow growth. At almost 4 months she is just in to 0-3 clothes. She sleeps all night without a peep.

The Lord certainly knows something I don't. There were many times in the beginning that I was sure that I wasn't strong enough to take on this challenge. Colin, again, is a rock. We both feel humbled to have Norah in our lives. She is our little angel, a perfect spirit who wanted to come to earth so much that she was willing to accept a less than perfect body while on this Earth. Knowing this brings tears to my eyes and fills me with something I can't explain.

The link above will provide a great deal of information for you to read if you want to. There is a spectrum of severity and we will only know what they are as she gets older. We take it a day at a time and count our blessings daily as well.

Life is very busy right now and I am looking forward to getting settled and breathing a huge sigh of relief. We will keep our blog updated as to the happenings in our lives, just like always.

Up for Sale

Our house is offically up FOR SALE! Thanks to my dear friend, Amanda, for flying all night to get here from Olympia, WA, painting, painting, painting and staging and mostly, for keeping me motivated! Thanks to my friends Debbie, Elyse, Kellie, Linda and our Bishop for watching my kids so we could get this done. Thank you mom for coming back and helping out, again! It wouldn't have come together without all of you! It looks great and I am loving it! (I swear I turned all the pictures the correct way before I downloaded them.)

I just love this little sweater set that was given to Norah by her Great-Aunt Verna Lee.

Aunt Verna Lee bought this set in the 50s.

Little Norah is blessed to be the recipient of such a beautiful hand-made gift.

It is a little treasure. Just like Norah!

5 Years Ago...

...Jackson David joined our family. What a sweet love he has been! He is a bit like his dad in more ways than just his looks. He is reserved, quiet (mostly), determined to do anything he wants to, adored by Cole, loves sports and loves his mommy! He's been waiting to turn 5 since November (Mia's birthday). We are so blessed to have him in our family!

Can't get enough

Every once in a while I get lucky and Norah will smile for me. It just melts my heart.

One Month

I really cannot believe that Norah is one month! Where has the time gone? She hasn't changed much to me but she is gaining weight growing. She is now 6 pounds 6 ounces. She sleeps really well for me at night and I am starting to feel human again. Cole has been so great with her! He often tells her he loves her so much and is very concerned when she cries or grunts. He really is sweet with her and very careful. Norah is such a sweet baby and is spending more time awake and looking around. I am just anxious for her first smiles. She will wake up if I talk to her and track me with her eyes. Even after 4 babies I am amazed with how they know my voice and respond. She is so much fun!

Norah's photo shoot

http://imakephotographs.blogspot.com/

One Week Old

Oh, my little Norah is already a week old in these pictures. I just can't believe it. It seems like she just got here yesterday but has also been here even longer. She is just so sweet and precious, cuddly and beautiful! She is such an angel, hardly cries and when she does it is just squeeky. I have to get it on video! It's been a rough week as far as adjusting to this new little person in our lives goes but we will get there. If only I could stay awake to feed her at night. She is not latching or nursing right now so I am pumping and giving her a bottle. It still takes a good 30 min for her to suck down 1.5-2 ounces. I went and got faster flow nipples today. We have been to lactation twice and are working on the sucking. She just falls asleep so easily! She will go one 5 hour stretch at night and that has been nice. The pumping in the night isn't as nice but I know she really needs my milk at this point. I do get to nap during the day and I am certainly tired enough to sleep hard at night.

I am feeling good. I was a bit skeptical after I got home that I would feel this good this soon. I did the dishes today and did some light vacuuming. Nothing big. I was a bit beat after that. I have a new respect for any woman who has had a c-section and an even greater appreciation for those who have had to have more than one.

I have been so blessed to have my mom to take care of us. Colin has filled in where needed and there has certainly been a need. I am so lucky to have all my needs, as well as my families needs, taken care of. Thank you Mom! Thank you Colin!

Lastly, which is worse - the 2 year old without a nap at 5pm but who goes to bed at 7, or the 2 year old who has napped but won't stay in bed at 8pm?

More hospital pictures of Norah

Norah Jane Croshaw

She's Here and we're home

We made it home from the hospital today. It felt like a long time but 4 days was worth the stay. I ended up with a c-section and am doing okay. Norah is the best baby! She sleeps so much that it is hard to get her to wake to eat. We are working on it though and I suppose in a week or two we will have it down. It just takes practice. Norah weighed in at only 5lbs 14oz. My smallest baby by far. She is 18 1/2 inches. She only lost 6oz and has leveled out. We are just so happy to have her and she is just so sweet. She makes these cute little squeeky noises. It is so relaxing to hold her. She is pretty floppy. Her siblings really adore her, Mia especially. Here are a few pictures. I am really tired and need to head to bed.