Growth Hormone

We started giving Norah her growth hormone injections tonight. It was hard to see my baby girl cry and know that this will be part of her life for a very long time. It is just another reality, for me, in coming to grips with PWS. She just brings such an enormous feeling of love and joy to my heart. She is grinning from ear to ear with her gummy smile. I know, I need a picture on here. I just love her so much! She also cut her first tooth earlier in the week. The others are right behind.

Book of Mormon Musical

The production may attempt to entertain audiences for an evening, but The Book of Mormon as a volume of scripture will change people's lives forever by bringing them closer to Christ.

—Official Church Statement on the Book of Mormon Musical

The Insanity of it ALL!

Wow, where do I begin. I have hit so many roadblocks with healthcare lately. I have to say, I feel greatly blessed that we have been able to get insurance outside of what was offered through Colin's work. It was so expensive!!! However, the offices around here are killing me to the point that I am about ready to bang my head against the wall and pull out all of my hair. I made an appointment about 4 weeks ago for Norah to see a pediatrician. I had to reschedule because we were in the process of being approved for our insurance. I certainly was not going to pay cash for an office visit with immunizations when I was going to have insurance 10 days later. I gave at least 24 hrs notice and rescheduled for today. I went to my appointment. I had to drive 25 min and I was maybe 3 min late. I give them my ins. info that I received on-line. The receptionist said that there should be some letters in front of it. I offered to call the insurance. I call and get all the necessary information. I take the info back up to the receptionist, she takes it and walks to the back where there are two other people. She speaks with them. comes back and tells me that because it has taken so long to get the insurance information that I am going to have to reschedule. It will just put the doctor behind practically an hour and that is just too much. "ARE YOU SERIOUS!" were the words that came out of my mouth. "Yes, that is why we tell you to come 20 minutes early." Guess what? No one told me to come 20 minutes early and it was 15min past my actual appointment time and according to the board they had it posted the doc we were supposed to see was running behind by 10 minutes. WHAT!!!???? My mind was reeling and my emotions fuming. I reached my hand out for my insurance paper. The receptionist offered to put the information in now so they would have it for our rescheduled visit. Rescheduled visit? Are you kidding me? I told her that I would be finding a different office to go to. She apologized and said some other things, she was patronizingly nice. I said that we had had this appointment scheduled for months, that this was new insurance to us and that Norah had special needs. I then walked out. I was just so furious! I couldn't believe that they wouldn't see us. I went to my car and cried, called my mom, cried, talked to my dad, cried. It is just so very frustrating!!

I went home and started to look up other pediatricians. I found one much closer to home and tried them. They won't schedule Norah until they have her records. Of course, one more thing. I don't have her records because, back in May when I requested them, they didn't get sent to me. I called June 22. They hadn't sent them yet. I called yesterday. Still not sent. I am just amazed at all of this. So, now I get to wait until I get the medical records from our pediatricians office in Cleveland via mail so I can take the records to them and then schedule an appointment for Norah. We can't start the growth hormones because she needs an apnea monitor that the ENT wouldn't write for because she doesn't see us on a regular schedule. We have to get the primary care doctor to write for it. I am so disheartened by all of this. I don't like this day and because I am irritated my kids are driving me crazy. Of course, they have sprayed water into the house twice now from the hose. Mia has been very sassy and that doesn't make it any easier. I need a vacation!

Event Pictures

Our latest events

The past 7 weeks have felt like 6 months and rightfully so. I can't believe how much you can cram into such a short amount of time. We did it though and now we are kicking back and enjoying summer the way it should be enjoyed.

Here is a quick run down of what has happened.

June 9 - Mia's last day of school.

June 10 - Norah to ENT to discuss results of her sleep study. She has mild central sleep apnea and Obstructive Sleep Apena. Found out she had a double ear infection. Treatment to clear up infection and try to shrink her adenoids to help with OSA. No fever or other signs of pain. Thank you PWS.

June 11 - Pack up moving truck. It was hot and it took ALL DAY. Carmen flew in to help the kids and I drive a few thousand miles.

June 12 - Said "Good-bye to Colin" (sniff, sniff) and headed out only an hour later than planned. Arrived in WI somewhere to stay the night. No tantrums from Cole. It might be a miracle.

June 13 - Cole, "I want to go home!!!" Let the tantrum begin. Drove to SD. We were very tired. We drove hard that day so we could spend some time seeing Mt. Rushmore.

June 14 - Went to Mt. Rushmore. I tried to get the kids to understand the awesomeness and grandure of it all but they just wanted to run up and down the rows of bleachers. The day was cold, Cole was cranky and I didn't put Norah in her pack the right way. She didn't like it. Her arms must have fallen asleep. We figured it out a little later. She was a bit happier. See pictures for a better idea. It was really a great place and we really enjoyed the 1/2 day break from the car. Drove to Billings, MT

June 15 - Last day. We stopped in Sheridan, WY, my birthplace. I don't think I have been back in the past, almost, 35 years. We arrived at my parents house in the evening. My kids were wonderful and spending 4 days with my sister was awesome! We had a great time catching-up in person instead of over the phone.

Up until July 1 we enjoyed spending time with Grandma and Grandpa Wright, playing with our cousins and getting very dirty. My kids had to take a bath pretty much every day. That's country living and they loved it. Me? Not so much!

July 1 - Colin and David arrive in Spokane. I meet them in Coeur d'Alene for a few minutes then they drove to the rental house and I went to pack-up my things from my parents house. It took me much longer than I expected and the truck was completely unloaded by the time I got there. We had a move-in party of at least 50 people. Thank you to our new ward members!! We set places to sleep, mattresses on the floor, went and got dinner and slept.

July 2 - Got up. Started packing to go out of town for the holiday weekend. Unpacked kitchen, set up the beds for our kids and left for vacation. At first I couldn't believe I was leaving when our place was such a disaster but really, it was nice to relax and come back refreshed and ready to unpack some more.

4th of July weekend - We spent some fun times with most of the Croshaw's just hanging out and catching up. It was hot but relaxing. I stayed at the cabin with Norah, Cole and Jackson for fireworks. Jackson has an aversion to loud noises. I did miss one of my favorite things ever but hey, we all have to sacrifice somethings right?

July 5 - packed up an headed back to our new home. Thankfully Colin didn't have to start work until July 19th. We have pretty much everything unpacked that has a place to go. Books are still packed. Makes me wonder if we really need them. Probably not.

July 18ish - Norah rolls over. This is something that I really thought wouldn't happen until she was maybe 9 months because of her low muscle tone. She hit that milestone right on! I am so proud of her. She now rolls and rolls across the room. Sometimes she gets tired, usually on her tummy, and just puts her head down and falls asleep. She is so funny and happy. She is such a joy!

July 20 - Norah turns 6 months old. Where did the time go?

July 22 - Visit with the new ENT doctor for Norah. We love her! She is great and on board with starting the growth hormone with a sleep monitor. Hopefully we get that after Norah's 6 month visit this next week.

July 29 - Approved for private insurance. Yahoooo. This means we don't have to pay COBRA and we will pay 1/2 the premium we thought we might have to pay with the insurance offered us through another company. Some, I repeat, some of the health care changes are great! I feel very blessed and lucky.

Today - July 31 - What a crazy year it has been already. I cannot deny the hand of God in my life as I have had to make so many adjustments and changes. Because of a loving Heavenly Father, husband, parents, in-laws, siblings and friends, we have made it this far. I have made it this far. I have done lots of changing and growing on the inside and I am glad for it. I know that what I lack my Savior makes up for. I am weak and He is strong. I have been missing my Cleveland friends and those things familiar to me but I am really having a fun time in a bigger house with family so close and new friends.

We are where we are supposed to be and Colin's new job has been great so far. We have room and would love visitors!

Pictures will be posted in a few days.

Oh yeah, in the past two weeks Cole has been potty trained! A great milestone for him. Colin and I were very dubious. He now goes all by himself and gets dressed and does all sorts of things BY HIMSELF if you know what I mean. I can't believe it! Hope I didn't just jinx it.

Rolling Over

Our little Norah rolled over today all by herself! It happened when we weren't looking, of course. Colin noticed she was on her tummy all of a sudden. Her 6 month birthday is this week.

I just can't believe it! She is just such a happy girl.

We are very blessed to have her.

Way to go Norah!

Finally

Our internet is now up and going. Yahhooooo! Can't do much without it. Thank you for the smart phone so at least I could do a few things. I really do prefer my computer! More to come later.....

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!