Peter - CarePage - November 24th, 2008

Sleep Study Results

Well, good news and bad news....

Bad news first - Peter did NOT pass his sleep study. The goal was for him to be in the 90's at least 90% of the time. He didn't make this. He did drop into the 80's but according to the results was pretty much 88 or 89 and then back up into the 90's - so that was close.

Good news- Peter was in the 90's 77% of the time. This is so much more than I expected!! I honestly thought it was in the 80's at least 50% or more of the time. So I am actually pleasantly surprised. They said they could push it given he was so close, but it was not what the recommended. Since he so recently got over the pulmonary hypertension they didn't want to stress out his little system and put him back. I admit, I am actually relieved to have him on oxygen for a little longer - just get us through some of the bad winter months. I'm hoping to schedule an echo for January to ensure all is still good with being off during the day. And then another overnight study in February. Peter is starting to get a little noisy at night - so we may end up having to do a full blown sleep study to see if he's developing sleep apnea/airway obstruction.

Other news - as the kids have been proclaiming - "we got yoked". On the back of both cars we have DS awareness ribbons. Today was one of the mornings..... I've been working on "forgiveness" lately and today decided to pray for an increase in the virtues of forgiveness and patience. Well, I was tested before I even left the house. Not a good thing. Alexandra decided way too late that she had homework to print out - so you can see where this was going. We were way late getting out the door! The car was frosted up so a challenge getting out of the drive way especially since I had to drive into the glare. But, there, on the back of the van was a splattered egg very evidently aimed at our DS ribbon. Oh dear God - can I just get out of the drive way before being tested?? I didn't do so good. But then I was sad.... what was going through their mind? who? someone I see every day who snuck over at night to yoke us? Deep breathing!! Like I said - I am still working on patience and forgiveness and a long way from mastering it.

Peter had another play date today! If only my social live was as active as his!! I was so excited to meet a very nice lady named Patsy a few weeks ago. We have a lot in common - including telecommuting jobs, wanting to be good moms, and blessed with beautiful children and DS. Her house was like mini-Disneyland. Every conceivable toy in their living room and dinning room - now a large play room. I think Peter had a good time, but I had a great time!! Tommy came along and was excited to make a new friend and have tons of toys to play with.... for the first time the "I'm leaving now" didn't prompt him out the door - he was too excited about the toys. I finally had to carry him out. We are hosting a play date at our home a week from Saturday. The following weekend we have the CSDSA Christmas party. I'm excited to have Advent start - so seems like so many things to look forward to this month. Alexandra turns 14 in a couple of weeks....yikes! where does the time go??

     

We are headed out to South Dakota tomorrow..... as John likes to say "over the river and through the woods to Grandma's house we go...". We will be spending Thanksgiving with a large portion of John's immediate family. The kids are very anxious to see their cousins. But even more so to see Uncle Bob!! Uncle Bob has a GPS and takes them treasure hunting.... oh bless dear Bob if he forgets the GPS because the kids would likely cry the whole time we are there. Anyway... hoping for a few great day after Thanksgivings sales - although fortunately our shopping is done - so no pressure.

Hope you all have a wonderful Thanksgiving!! I know I have much to be thankful for!!

Love,

catherine  

Peter's First Year Movie

I sure hope this works..... color me frustrated as I tried unsuccessfully to upload my very first home made movie! I shall master technology. I still love my new computer..... but should not have stayed up late playing (again!)

Love,

catherine

Peter - CarePage - November 17th, 2008

Peter Was Published!!

Hello!

So several different type of updates. First, I am working on getting our blog put back together. I am playing with the layout but the posts are there. I do have stuff on other kids there and will be putting them on more regularly now that we have a computer with some internet speed - yeah! There is also a way to subscribe so that you can get e-mail updates or other forms of notification when we update it. So please check us out at www.krausebears.blogspot.com. We look forward to seeing you out there too!!

Next - Peter was published! As many of you might know, October was Down syndrome awareness month. Parenting magazine was accepting submissions of our cute little angels. I submitted Peter at the prompting of a friend, and then went out every day looking for him. I finally gave up and forgot to keep checking. Tonight, I decided to go back out and check it out. After looking through well over 100 photos I found him. YEAH!! Peter has been published. So please do check him out. Not sure if there is a way to comment but in my biased way he was of course the cutest of all kids - but I have to admit there were some beautiful children - so he had quite some competition.http://www.parenting.com/gallery/Baby/A-Special-Joy-23-Babies-With-Down-Syndrome/9

Peter's sleep study....well, the last week was a bit crazy. We got a bit of tummy bug - very mild THANK YOU GOD!! He was looking out for us. But, we had little sleep, a lot of stress and way too busy of a schedule. Alexandra had 4 performances of The Lion, The Witch and The Wardrobe - so check out our blog to see her scary face (she was a hag). Tack on the normal school, home, work, etc and we probably should have waited. But, Peter seemed cleared up from his cold so we did it. The first night we attached him to the monitor at about mid night and watched the numbers like obsessed stock brokers. He was very restless and dropping into the 80's quite a bit. After a lot of stress and about 40 minutes we just disconnected the machine. Peter was very restless so we figured he might have a tummy ache. The next morning he just about ejected himself from the crib with quite an explosive bowl movement. That night we tried again. Every time I checked the monitor he was in the upper 80's bounce up to the 90's and then back down. The goal was that he be in the 90's 90% of the time.....I am pretty certain he was not. I was hoping he would pass so that we could go to South Dakota for Thanksgiving without oxygen. I don't think that will be the case - but a couple of tanks just for night is still a lot easier than the big machine and lots of tubes that too many people will trip over. And, honestly, there is some comfort in having oxygen through the winter months. We have much to be thankful for again this year!! Dinner will be very cold if I list out all the wonderful gifts we have been blessed with this last year.

Over the last week or so Peter has had two play groups... it is so nice to spend some time with other parents taking the same journey as us, on their own path. To talk and compare notes and get support from other families that understand how this wonderful, magical journey changes us for the better but at times can be scary and full of uncertainty. Not that we would ever change this gift for another. Check out our blog and you can see some pictures there of his play group friends.

Peter had his 18 month check up today. All was well. He got caught up on shots, and had a flu shot. So 4 in total - and he was very brave through them. Tommy was more upset watching Peter, than Peter was. Once I picked him up he smiled at the lady giving him the shots. Dr. McCaffery was happy with Peter which is always encouraging. He weighed in at 21lb 1oz with diaper - so I would speculate about 21lbs even. He has finally grown a bit at a whooping 30.25"....yeah Peter!! I think this puts him at a steady 50th percentile on the DS boys chart....but.....we are increasing chances of him being over 5 feet tall - which we all know girls like boys that are taller. Now, he is so darn cute that height might not be necessary to find little miss perfect - but, we shall see.

Mr. Peter would like his milk now - so cutting this short.

Love to all - thank you for your kind words of encouragement always.
catherine

Peter's Play Groups

We are so excited, Peter has some play dates recently. About a ten days ago we hosted a group in our house led by our music therapist Cathy. We had only a couple of kids - but boy did they enjoy the music! It was nice to watch the kids play and Peter was the little energizer bunny!

This weekend we went to a different play date.... more of a mom's group for families with a child with DS. There really wasn't anything set up in Colorado Springs for mom's. So - with some back and forth of e-mails an initial group met at a local Chick-fil-A. This weekend we met at the house of Josh - 3.5 yrs old. Peter was smiley but sat in one spot. Unlike his normal self - he would just not crawl around and explore. He did enjoy going down the slide and getting music to play on a big toy. He was excited to see his friend Erick again. They are almost the same age - so it is interesting to see what they do in common and where they differ. No doubt they will grow up to be buddies!

    

Better get to bed. 

Love, 

catherine

The Lion, The Witch & The Wardrobe

Alexandra auditioned for her first theatre production a few months ago. While she tried out for the witch, she got a non-speaking part in the witch's army. She was dedicated and went to every practice. She made new friends while learning fighting routines....amazing no one got seriously hurt! She was then given a second part - as a statue. But, we all recognized she had been rewarded for her dedication and hard work. Then - the break she wanted - a line was added to her! She was now a speaking role - even if one line - still a speaking role. The production was put on this week, and she did great!! She is tuckered out - especially since they did three performances on Thursday - but she wants to try out for the next production. Will keep you posted! We weren't allowed to use flash - so here are a few pictures so that she you can imagine the rest. 

God bless - 

Catherine

Peter - CarePage - November 5th, 2008

When a door closes, He opens a window!

I realize we are a broad group of people with very diverse ideas. And I realize that today, the day after our elections finally got here you are either excited or disappointed - but soon the reality that we continue to have the same lives we did the day before yesterday sets in. I was admittedly in the 47 million disappointed voters last night. As a matter of I sat staring at the computer monitor and I cried, and cried and cried. Exhausted from being an elections judge, I finally went to bed. I honestly felt complete and utter despair. For those of you who are going to be terrible offended, please feel free to stop reading now. I promise to as much as possible keep my future blogs politics free.

Last night though I cried, I cried in complete and utter frustration, sorrow, and anger that we have elected officials into all levels of our government who do not recognize the dignity and value of every human life. My heart broke at all the lives we will loose to abortion in the upcoming years. So far it is 47 million over 35 years - and how many thousands of them were little babies like Peter? - innocent, loving and trusting. Not given an opportunity to even take their first breath. And for those of you already gasping at my conservative views - I did warn you! I can't tell how many times I hear the argument of mother's health, rape and incest. However, based on what Planned Parenthood has report that accounts for maybe 1% (that would be ONE percent) of all abortions performed annually. So - in the spirit of cooperation - let's focus on the 99% that dispose of a human life because it is imperfect or inconvenient. Or as I was told by some close to me during my pregnancy "a problem that should be taken care of" or a "burden" I had the responsibility of disposing of before it was too late. And after Peter was born, people meeting him for the first time that tell us how sorry they were for us - "what a shock" or "how disappointing". Or better yet the "you knew and you still had him?"....well, yes! YES! And I stand her today feeling like the blessed mother in the group because I got Peter and they didn't. I realize it is childish, but I feel like I undeservingly I was blessed with the best.

Today I woke up early for my morning prayers - tried really hard to be at peace and in praise. It was hard. I've been called to Psalm 37 in recent days - so I prayed it too, then sat down to journal. Wanting this heavy weight off my heart. I wanted to trust and believe and see the light that shines beyond that dark clouds. I told God how hard it was for me today. I read a few e-mails from friends about being positive, and keeping our eye on Him. "If only it were that easy" I thought. I'm an amateur at this and I still despair!!

I reflected on the actual elections. Mr. Obama ran a remarkable campaign that has redefined how politicians run. Mr. McCain ran a more traditional campaign. And, while I am generally a traditionalist, I am hooked on gadgets, small appliances and pretty much anything cool with power. And, that is that campaign that Mr. Obama ran. Really, it was like seeing a new technology rolled out on your computer....for some of us aging folks - the first time we saw a "Windows" computer after spending years learning how to enter commands at the prompt sign and thinking Pong was the coolest game ever. And I sat back saying, I must learn something from this - that to really engage people, drive change, and get people moving - we must honestly change the same old way we've always done things. We need to learn and revolutionize - we must think outside of the box and be creative in how we reach people with the voice. Guess what - as I thought this felt a ray of hope breaking through the dark clouds.

I get it God! I need to learn, but I must not give up. I must not feel defeated - I must continue down the path of truth to protect every human life. This isn't about religion - it is about humanity, respect, dignity. Mind you this all happened by about 6:45 when I had to get the kids up. I prayed that God continue to give me opportunities to share and educate on the blessing of our children - and especially those that will be less protected than before, those we called disabled but who in so many ways are more able than us. And then the sign - as I read through my e-mails I found the one I had not expected to see. Yesterday while working the elections I received an e-mail welcoming me to the Colorado Springs Down Syndrome Association board. I had interviewed last month and felt I did not do well. But, they were excited at the ideas I had and I officially join the board in January. WOW! WOW-WOW! WOW-WOW-WOW!! An opportunity to truly be a part of an organization dedicated to protecting the rights of our special children and educating our communities and our medical providers so that prospective and new parents will not have to be afraid at the news none of us expects to hear.

So I learned today that yes, when it seems a door has closed, God will provide the open window for us to keep going.

God bless you all -
catherine