Family Update 4/15/12

Peter is doing well....and no news is good news on the spinal. He did get quite a bump in the amount of chemo he has to get and the first few nights were rough - waking up, dry heaving some, but generally just uncomfortable. Fortunately it has got better and we've got through a couple of nights were he will stay in his bed. John is being the strong one! When Peter wakes up he will give him a drink in his bed and get him to lay back down. So far so good.....we were just talking today that maybe we can think about moving him out of our room some time in the near future. Would be so nice to have an adult bedroom again! We'll think about it again after school is out.

What is most exciting is that little man seems to be really taking off with working on vocalizations! I will swear he hugged me and said "I love you" as he squeezed tight. No prompting in the world has got him to say it again.....but I know he did say it!! He has been using "I do" and "I did" this week, in addition to sounds that are clearly efforts to put one or more words together. Yes, I am still in that overwhelmed state but pushed to start The Listening Program with Peter. I decided to go with the least intense to start off with - 15 minutes a day. We made it (by stretching our imaginations) to 8 minutes on day 1. Then none on day 2 and loud NO!! on day 3. So we decided to not worry about time and logs and stress - and let him just listen as much as he wants until he gets used to the headphones which are huge!! And it seems to be working. We have stayed on the first module that is classical music with nature sounds overlaid. He calls out when he hears the birds, and just listening to the music he starts to make sounds - singing, talking, humming - all good! This is complimented by Peter's imaginary phone conversations that he really enjoys.....he opens up our "I don't have a real place to be stored" drawer in the kitchen, takes out John's old phone and walks around conversing up a storm. When he is done, he closes the phone up and puts it away. Today at church he was really enjoying the music and can clearly sing "alleluia". We enjoyed a breakfast at church and it warmed my heart to see Peter playing with the other kids - chasing, waving, dancing and more chasing!

Gretchen continues to be his best buddy. So often I get asked if they are twins, and in so many ways they feel like it. She is however the constantly on the move, multi-tasking, high energy yet nurturing little girl. I took a great picture of her in the car this weekend - while Peter plays with John's old phone, G plays with my old Blackberry. She talks and texts all at the same time! So sitting looking so cute in the car - her baby in her lap she was the picture of a multi-tasking little mommy on the go! She accumulates things too.....those valuables she can't go with out..... right now it involves whatever electronic is tickling her fancy at the moment, her baby that looks like it has been well loved for 100 years, and the Cars book we got at Costco a few weeks ago but looks like it has been read by 100 kids. Of course, anything Peter has or wants becomes at the top of her most-wanted list! The two of them had a great time yesterday. We spent hours running around Mr Biggs. It is a fun center here in town that is closing down - but it has a portion that is for little kids - it is like a village with a garage shop, a bakery, farm, fire station, and so much more. They weaved in and out of each nook and cranny having a great time! While Peter is a man on the go, fortunately I can coax Gretchen into following me when we need to take off after Peter......it beat the times they have decided to run off in opposite directions and not respond. Then the decision becomes - who can you catch faster and then do a 180 and chase after the other before they get hurt. Thank you God for letting G get to the point where she follows at least some instructions and has embraced her role of chasing after Peter too!

Mr Biggs was a lot of fun - it was actually the event I organized for Michael's class this weekend. The boys were in and out of the laser tag most of the time, plus arcade games, go carts and just hanging out. It is very rewarding to see Michael having a good time with a group of boys that he has been able to build a good relationship with at school - and see it continue to blossom out of school. Many of these boys started off at the school with Michael, and take great pride in knowing they will be the first class to graduate who completed all their years at the school.....a badge of honor they all enjoy! They are goofy, and funny and make me wonder when they say things like "you didn't hear that did you Mrs Krause?" For the record, I did not stalk the boys or run after them.....I was more strategically positioned to just make sure no one went missing. Why you ask? well, i didn't want to embarrass Michael (or Mike as he insists on with his friends) - I was exhausted from sitting in the bleachers for Jack's wrestling tournament.

Oh goodness it was a long week. There was an "incident" at practice on Tuesday that got horribly blown out of proportion and then mis-represented to the school principal. Jack was kicked off the team which crushed his spirit. After various conversations, interviews, etc Jack was put back on the team. He vowed to win gold this year - and that is exactly what he did! It wasn't easy as he had two strong opponents. He almost pinned one several times, and the other took Jack to overtime. But at the end, his hard work and perseverance paid off and he got the gold medal. We are very proud of him!

My proudest moment came however off the mat. During the tournament there was a young boy, about Jack's age, from another school who suffered a crushing defeat in his final match. The boy sobbed in the ancillary gym where the medals were being handed out. What made this boy stand out was that in addition to sobbing in a way that broke your heart, his face had deep purple birth marks that covered a good half of his face. I could easily see how many were slightly uncomfortable and did not know what to do. Thinking he was hurt, I asked him if he was ok. His dad turned and smiled, and the boy just nodded he was not hurt. Jack could tell the tears came from a painful defeat and a gold medal desperately desired but horribly lost. He stood next to the boy rubbing and patting his back as he tried to comfort his ego. At that moment in time I know Jack didn't see the deformity in the kids face, but just a fellow soul who needed to be acknowledged and comforted. I was proud of him! I share the story because so often we have to address Jack's passion misdirected, but this was on of Jack's glorious moments where his passion is directed towards compassion. So proud of you Jack!!

Also very proud of Alexandra - the budding golfer in the family. She and John have been training hard. She is frustrated she has not yet broken 100 but continues to hold on to the goal. She shot 111 again at the varsity tournament this week. The JV was cancelled due to weather - but she said for the time she played she was doing even better. More to come this week! In addition, this week is her induction to The National Honor Society. Alexandra was selected to be an "Ambassador" of her school and is excited to be participating in various events coming up. She was also selected for "Campus Ministry" which she was the most excited about. She had applied for that position months ago so when the results were finally published it was that celebration but also relief of the wait being over. Still getting driving hours in.....and I can't wait till she can go to the store to pick up milk and a Starbucks without needing an adult in the car! :)....."baby - get me a venti 'bucks please!" .....oh I can't wait!!

Last but not least by any means is Tommy. He is living the dream! Loving school and loving having kids to play with in the neighborhood. We have two kids around his age that moved in next door and he plays with them pretty much every day - generally it is hours in the backyard. There is still his best gal buddy several houses up who loves to walk Angel (our dog) with him. I, of course, love it that I get e-mailed or stopped by the moms and grandmas to tell me just how sweet he is, and how glad they are to have him as a friend for their kids. Warms my heart! Now that spring is here he will be starting tennis and I know he will be very excited!

The week has been crazy busy! In all my free time (I took Friday off work to make it happen), I was co-organizer for an appreciation dinner for the Colorado Springs Down Syndrome Association. It was stressful leading up to the event but it went off without a hitch! We had about 50 volunteers and sponsors at the event. The theme was "Welcome to Holland" based on the poem about parenting a child with special needs. The room was filled with tulips and had a spring like feel to it which felt warm and cozy as the evening progressed and the room was lit by candle light and little white lights that framed the windows with amazing views of the mountains changing colors as the sun went down. I love our downtown area!! So I am going to end this post by sharing with you this beautiful poem that I know has touched so many lives. We all have our own journeys, our own path to walk down, but as a parents of a child with special needs I think there is a thread that binds us together - we know that while others may pity us, our little secret is that we are blessed beyond our wildest dreams! until you've experienced that unconditional love, it is hard to explain why this journey we never knew we wanted is not only awesome, but we wish for others to share in it too. We are so blessed!!

WELCOME TO HOLLAND by Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Love -
Catherine

Family Update!

Things I learned this week...........I am often overwhelmed - and need to get used to it - don't remember what it feels like to be peaceful; I suck at ironing - as told by the vein-like lines climbing my pant legs no matter how hard I tried to get them out; the weekends are never long enough - I could use 3 day weekends every week; just because I am tired doesn't mean the kids are ready to go to sleep - making the house black and staying really quiet doesn't always work; and my favorite is that I am clumsy enough to hurt myself with the seat tray on an airplane.....I was trying to sleep on the plane but unable to get comfortable, decided to lean my elbows on the tray and cradle my head. The warning slides should have alerted me to the danger ahead - I did fall asleep until my arms slipped off the tray and my head came down with a crash broken only hitting the chair in front of me before landing on the tray.

Back from another trip and exhausted! I really could have used a long weekend to get caught up. A decent amount of laundry done and the pantry is stocked so I really should be thankful for what is done vs. what seems to be the eternally growing list of to-do's. I read this week that women need to relax at least 15 minutes a day - quietly - to ensure our body stays in balance. Some chemical I don't remember .....clearly not one that is in balance right now. I guess 15 minutes is something to strive for.....and I could really use it as I sit contorted trying to update this blog and Gretchen is literally screaming in my ear thrilled at the previously unattained pitches. My ears are ringing!

So starting with the little one first - G is doing great despite having a runny nose from allergies. She is energetic 24/7 and talking up a storm. This weekend was exciting as she finally relinquished her old worn out tennis shoes to try on some new shoes. Shoe shopping makes her scream in a non-happy way, but she found her dream shoes - hot pink party shoes! Once she found her dream shoes suggestion of trying on any other shoes brought on the non-happy screaming. Hot pink party shoes it is!! She and Tommy are becoming very close and she can be heard calling out "Thomas!" constantly. Her doll has gained a few more stains and scars ....did I mention she is not machine washable?! So not smart thinking Santa!! At Jack's last wrestling match Gretchen had been eyeing the girls playing with Barbie like dolls. After walking past several times, circling the group and finally getting the courage to try and play with the "big girls", Gretchen proudly held out her doll only to receive an unenthusiastic "she is dirty!". Clearly disappointed she came back to the bleachers to sit with me while hugging her doll extra tight. So this weekend we did our best to give "Dolly" a scrubbing and bought her some clothes to help her look more presentable. So the stains from being well loved are hidden but not lost. Gretchen likes to give her baby positive words of affirmation with at times a scary level of enthusiasm - tonight it sounds like "AH-GRRRR UUUUUHHHHH YOUUUUUU SSOOOOOOO PRETTY AHHHHH-GRRRRRR!!!!!".

Peter is doing great! Still no glasses ....they probably did go out in the trash one night. The replacements are still on their way - delayed by billing issues. No more two words together - but still working on words. Planning on starting his programs this week.....assuming I get a few minutes to read the instructions and get them ready. Having them on my nightstand must count for something - right??!!. My excitement this week as little as it may seem is that Peter is doing a much better job at bending down while bending both knees. Locking one leg as been an issue for a long time. He works on it but seeing him do it more and more often outside of therapy is very exciting. He is still not sleeping well, and is not eating well - but has got so thick on the upper body - big top resting upon his little chicken legs! He is really enjoying the warmer weather and playing outside. We still need to sign him up for swim lessons. In early April we have his transition meeting with the elementary school to prepare for Kindergarten. I am excited to report that this year's school pictures turned out really cute!

Thomas is still loving school - second only to playing with his friend Arianna up the road. He is devastated when she is not available to play.....I think given a choice he would move in with them so they could play all the time! When she is not available he keeps up with Gretchen and Peter. He and G are having more and more fun together, and he will help her with "Dolly" - he makes a great uncle! Ferdinand continues to be his favorite book, followed by anything Dr. Seuss related. I find that hilarious as I admit his books gave me the creeps as a kid - the Hat in the Cat totally stresses me out - I do not find messing a house up to be entertaining! He is still working on guitar although not as focused as we would hope; and continues to count down to summer break and tennis lessons - you're not alone buddy! I can't wait till summer either!!

Jack is super busy with wrestling and football. He is still devouring books like crazy. Thank you for the prayers for Jack - things have been getting better at school and spring break was a much needed break for him. We ask that you continue to keep him (well, all of us!) in your prayers. First wresting match he lost, second one he won beautifully, and third one I thought would leave him injured. For as hot tempered as Jack can be he keeps his cool on the mat and a focus that is inspiring. The kid he was wrestling was the one that pinned him during the finals last year and is clearly very talented. Even though he lost by points, he came off the mat with a smile on his face. The other team's coach told Jack that he had broken his opponents 2 year streak of pinning every one he wrestled. The boys mom then came over to congratulate Jack and share the same story. Suffice to say Jack is still beaming from it! The mom was so sweet to come over - her older son was on Michael's basketball team - and we had talked a few times. Her kind words were the cherry on top for Jack. May we all remember to take a few minutes to lift others up! How awesome to experience defeat and still have something to celebrate.....his determination, fight and never-give-up attitude will serve him well!

Michael decided to quit football. It was emotional as he knew how much John wanted him to do it. But, as the new kid on a very experienced team it was an unsurmountable task. Michael has always preferred basketball as a sport - and will be doing baseball again this summer. He is enjoying school and his friends - so thankful for that! No mocking allowed - but Michael had his first babysitting gig this weekend for our neighbors. From dog sitting to baby sitting! Our neighbors see how well Michael does with his siblings and were thrilled that he was available to take care of their son for a few hours so they could get away for a late movie. The kid slept so Michael enjoyed catching up on a book and some History channel. Phew - we all wanted the first time to go smoothly! With as busy as our family has been with sports, I am so thankful for all the help Michael gives me. So proud of what a fine young lad he is growing into!

Alexandra made the newspaper! She and John were referenced for the upcoming girls golf season. They have been at it hard, and I get very positive feedback on how she is doing. The goal is to consistently shoot under 100 and then work down from there. She really enjoys the sport and I am thankful she and John have that something special they enjoy together. She continues to do well at school and supports John's finance class at church by watching the kids for the families going through it. She is still doing to odd jobs around town - baby sitting, house help and office help - but is hoping for something more stable for the summer. John took her to a job fair and now has a few options to continue to explore. We are also hoping she can get some volunteer time in at the hospital so she can continue to discern her college options - so far still leaning for something in the medical field but leaning towards occupational therapy. Alexandra really enjoyed the down time of spring break including a sleep over and two movies this weekend (October Baby - loved it! and The Hunger Games - good but you can never capture all that is in the book); now time to get ready for testing and college searches - ahhh!

I think that catches us up on all! John is busy with golf and finance and taxes coming up! I am busy with work and home and too much other stuff. Hoping we can find some time to just slow down and enjoy but right now feels like we are going non-stop at neck breaking speeds. Off to fold some more laundry!

Hugs!
catherine

Thankful.....

Here we are a few days after Thanksgiving. Alexandra is off at theatre practice for her upcoming high school production of Alice in Wonderland. Michael helped John bring in the boxes of Christmas decor ready to be pulled out. Jack and Tommy are wearing their matching cowboy boots (again!) and climbing all over the swing John set up in the front. Peter and I just got home from the grocery store and picked up (on sale - yeah!) our Christmas turkey to throw in the freezer for a few more weeks. And I reflect on the last week - the ups and downs, the joys and the stresses..... but here are the things I am thankful for with my family -

Peter.... I am thankful for the health he does have and the incredible amount of love and joy he brings to our family. I am thankful for the times he does eat properly and has good color. I am thankful that he is standing and taking a few steps. But, most of all I am thankful for his smiles and his hugs - and the way he so freely shares them with the rest of us.

Tommy.... I am thankful for his laughter and seemingly unending repetoir of silly jokes. I am thankful for his ability to adapt and flow with the needs of the family and his compassion towards Peter - when he can stand up and say “Peter isn’t different, he is just one of us” with conviction. But, I am most thankful that he is my child going through the “I want my mother” stage and will spend the time to quietly snuggle up when I need it most.

Jack....I am thankful for his spitfire attitude in life. I am thankful for his boundless energy and ability to keep up with everyone. I am thankful for his unparalleled ability to see the positive in life and his giving nature. When he rides the mechanical horse at the grocery store he always leaves a couple of pennies on the coin machine so that any child not as lucky as him will be able to use those pennies and have a fun ride too! Today he spent all morning making cut-outs of his hands so he could make coupon books for massages to give to relatives for Christmas... he has a special heart! But, most off all I am thankful for how he always remembers to give a compliment or pat someone on the back for a job well done. As I tell my kids “...people will forget the things you did and the words you said, but they will never forget how you made them feel”.... and with Jack I know he makes people feel special.

Michael.... I am thankful for his growing maturity and sense of responsibility. I am thankful for his inquisitive mind and natural curiosity about life. I am thankful for his ability to be the quiet strength when everyone else is way too loud. But, most of all I am thankful for the times he comes up and rubs my back because he just knows I need it, the little things he does to make things easier on me, and that of all my kids he enjoys spending time with me baking. We share a common love for brownies!

Alexandra.....I am thankful for the strong young woman she is growing into. I am thankful for her inner strength and her desire to do the right thing. I am thankful for when she prays for her friends, and when she talks to me about how to help others. I am thankful for her desire to make a difference in this world - and her concern for children with disabilities around the world. I am most thankful for her honesty and desire to include John and I in her life - the many times she shares what her concerns and joys are, what is going on at school, and her desires for her future.

John....well, what else can I say than he is the man that made the choice to spend the rest of his life with me - ups, downs, and everything in between - I think that makes me a very lucky woman.

This afternoon we started putting away our Thanksgiving and fall decor..... goodbye for another year to my pilgrim statuettes I love so much, and hello to our Christmas decor - the tree, the lights, the nativity and our advent candles. Hello to four weeks of soul setting much needed at this crazy time of the year.

We are thinking of moving our blog to an Apple/Mac based account and probably keep up the carepages. The link is a little lengthy therefore harder to spell out, but the ease of using our Mac technology to do updates may just out weigh the move off blogspot. Please check it out and let us know what you think!!

http://web.me.com/catherinekrause/Krause_Bears/About_Us.html

(along the top you will see the links to different "pages" - we have photo albums posted and hope to add video shortly)

Please let us know how you like this new site.... the name is a little long - but we hope you will save it in your favorites and visit us often!

love -

catherine

Another Family Update

Ok - so I am going to quit saying I have no excuse for not updating the blog - so here is what I consider my semi-valid excuse - I'm a pregnant mom with five kids at home and a full time job - I am tired, worn out, achy and although every night I tell myself I am going to update the blog - when push comes to shove by the time I am done tidying up, putting away dinner, making lunches, cleaning the kitchen, setting out breakfast, packing up school stuff, putting away laundry and setting out little boy clothes I'm wiped out and bed sounds better. And then I guilt the next day that when memory loss kicks in I'll wish I had this blog - about as close to a journal as I have right now ....but so far every night the desire to roll my aching body into bed has outweighed everything else. Pregnancy is wiping me out - clearly I'm not the spring chicken I was when I was carrying Alexandra 15 years ago!!! Speaking of pregnancies - all is going well, the echo's and blood tests we had done all came back very positive. I chose to not have the amnio - and optimistic that all is progressing well. We did get confirmation the baby is a girl - much to the excitement of John and the kids. He's had the name picked out for many years waiting to be used - so our little girl will be Gretchen Anne Krause.....eta January 7th 2010..... however I intend on willing her into the world on December 31st 2009 - no! not for the tax credit, but because I have a PPO plan and I don't want to have to meet my deductible all over again!! Here's that latest pic of Gretchen Anne.

Working our way up the kid list - Peter. Little man looks like a unicorn right now. We don't know what happened - but he snuck away from Grandma to fight the table and lost some how. All of a sudden we hear his "I'm really really really hurt cry" - I was fighting Alexandra's hair and a curling iron - and could hear Grandma comforting him. By the time I saved Alexandra and me from being burned, poor Peter had a bump literally the size of a golf ball in the middle of his forehead. I seriously don't know how he could of done it!! However, once dinner was served he was distracted and on to new things. Our picky eater who survives on little has found an appetite in the last week or two. He must be getting ready for a growth spurt because I have never seen him eat like he has recently. He can now down a whole toasted cheese sandwich which is amazing for him - and tonight ate about a bowl and a half of mac-n-cheese!! Still will only have yogurt for breakfast - but we are going through it a lot faster lately!! He's still not walking - hints at being interested and then goes right back to bear crawling. He has however picked up quite a few more signs lately - we suspect he's doing more than we realize. Still slow on the vocalizing - but has a few times made animal sounds when we talk about animals - and has made ba sounds when signing book. So I am stretching but we have "da" for dog, "ha" for hi, "taya" for tired, and now possible "ba" for book. I am still very optimistic that one day I will hear him whisper "I love you" in my ear as he gives me his already world famous bear hug!

Tommy and Jack - well - I have to lump the dynamic duo together. They really are best buds like buds should be! They have so much fun together...... Jack is loving 1st grade and is coming along with his reading. He is doing flag football this fall - and much to my embarrassment I have to admit he's the hyperactive unfocused but extremely excited little kid on the team. He doesn't lack for energy - but is clearly lacking in focus..... just need to keep working on it. Tommy is at Corpus Christi with Jack and now has his own little group of friends. Of course he claims Jack's friends as his own too - and loves to see his big brother at school with him. Tommy has amazed his teachers with how smart he is - he was recently tested for letter recognition. While the other kids recognized 5-6 letters in the alphabet - Tommy had well over 20 almost nailing the whole alphabet. He can tell us how to spell his name and is constantly pulling out letters that others' names start with. He fights wanting to write or color or draw - but I think is ready to start working on sounding out letters and early reading skills. Tom-Tom did turn 4 just a few days ago - and we have his party tomorrow. Here is the Jack-Tommy team during one of their many play sessions.

Michael switched schools - and while I was very hesitant I must admit I have never seen him happier. He was mad about the move until about first day of school - and has since embraced the new setting. He's very excited about what he's learning and the style of teaching. Amongst his subjects is Latin which he is picking up so fast. Of course he loves to bring his book to the dinner table and test our latin skills..... thank goodness for my background in Spanish or I think I would flunk out of Michael's grilling us!!

Alexandra just called me to check in..... she's headed over to a friend's house for a sleep over following her first Homecoming Dance in high school. She too is really enjoying school this year - her group of friends - and playing softball. She's really picked up the sport - and we enjoy watching her play when we can make it (not always easy with conflicting schedules). She did get asked by a boy to the dance - which made her feel special. He's new to the area - but she considers him a FRIEND. All my brainwashing techniques are paying off as she let John and I know that she is not ready to date - doesn't want to date - but hopes to have a group of friends girls and boys that she can hang with. She's definitely on her way there. Here is is getting her corsage...... she looked beautiful. She reported in to let me know she was exhausted, headed over to the sleepover and will tell me ALL about it tomorrow.

Anyway - I'm pooped. John is up in the mountains fishing this weekend - and after homecoming, a softball double header for Alexandra and having a birthday party to organize tomorrow, I think Gretchen and I need some rest.

Love to all -

catherine

Where did May go?

I can't believe it is June.... seriously - where did May go? I am worn out, totally exhausted - not eating right, not drinking enough water and broke my exercise routine. I know where May is..... walking away and leaving me drained. What a month! So.... let me try and recap:  

1 - John took an 5 night a week course for the whole month of April to become a CNA (certified nursing assistant). In May he took his state exam and passed - yeah John!! He has since been hired on by a local agency in the Springs and assigned to Peter. Because Peter's gaps continue to broaden between him and typical kids - the state will assign him a CNA to handle his care. Fortunately for us parents are able to do it - so we have the comfort of knowing John is still caring for Peter during the day and has the training to support him from a medical perspective based on Peter's needs.  

2- Alexandra - this was a crazy busy month for my princess.... she was accepted to St. Mary's High School - a college prep in town earlier this year. She took some testing and actually was able to test up into higher level spanish and english classes. She also joined the school's softball team despite not having played before - training has started and actually as I type she is at her first game with John and Michael....8:45pm game is a little late for the little boys. This last week Alexandra graduated from Corpus Christi Catholic School - she graduated with high honors and we hear was in running for valedictorian but didn't get it. I think she is glad to be done with school. Friday she received her confirmation - another big milestone in her growing up! She continues to tower over me and gets more beautiful by the day. She is doing acting again this summer and really looking forward to it.  

  

3- Michael - a bit of a quieter month for him thank goodness. He did graduate 5th grade which was bitter sweet for him. We are moving him to a charter school in the fall which he is not too excited about it. He is going to miss his friends! So while he is excited to have summer break - he also knew he wouldn't be going back in August and that made him sad. We have agreed that he will try the charter school out for a year - following a very traditional curriculum. If after a year it is not a good fit, then he can go back to CC. Michael has started baseball for the summer - games start next week. He is very excited about that.  

4 - Jack - I bet school is glad to get a break from my incredibly loving but terribly mischievous young boy. Hate to admit it - but this month he got himself kicked out of school for a day.... he hit someone he thought had stepped on his lunch, then hit another kid he felt was sitting where only the teacher should be. He has been working so hard on controlling himself, using "I" statements to explain his feelings, counting down when angry... all the techniques he's been learning. But, he had a bad day and I had to go pick him up from school. Now I feel cruel admitting this, but I went to Starbucks after picking him up - got myself a drink and he wasn't allowed to get his traditional cup of whip cream. I think that was torture for him - but he did say "I assume I don't get whip cream today".... to which I said "You're right". No temper tantrum, he took it like a big boy but was very very very disappointed. He was sad school was over and says he's ready for first grade... we shall see if first grade is ready for this bundle of energy. He has asked to take tap dance classes - so we are going to look into it - may be a good outlet for those constantly on the move feet of his.  

5 - Tom-Tom - what a character! He is so excited to have his siblings home for the summer. I have noticed such a change in the last week since Jack wrapped up school. Tom-Tom and Jack are attached at the hip and it has brought out the tough side in Tommy. The part John and I enjoy the most is being in the other room and hearing them create their fantasy worlds again..... the burning lava, the sharks circling the couches - space communicators, flying ships and all else their big imaginations create for them. Tommy is having the time of his life having them home - despite of course the occasional drama moment most siblings have - right? 

6 - Peter - how to fit it all in?? I'll follow my sorority tradition with pro-con-pro approach to this update. First pro: Peter turned 2. WOW!! Two years since he rushed into the world and established himself as a NICU favorite. Two years since the day my heart soared with his birth and cracked with the fear of loosing him. Seems so long ago with my little international traveller - I honestly don't remember my life without him. Peter interestingly doesn't really like sweets - so we celebrated for him! He does however love salty food - so show him a fishy cracker and he is inhaling it!!  

The con: and this does technically fall in June but - might as well get it out there since today is my assigned day to be ok being sad. We had Peter's follow up cardiologist appointment yesterday. It didn't go well. His oxygen sats were low, and his pulmonary pressures were elevated almost to where they were post heart surgery. So well out of the "normal" range. As the doc recorded his notes he added Pulmonary Hypertension back to what seems like the never ending list of diagnosis for Peter. My heart broke! We don't know why his numbers are up - and he needs to go back in a month. Peter continues to have a reactive pulmonary bed, so it may be as simple as a combination of the cold he seems to have and the storm that was coming in during his echo. Yep, doc says storms can mess with little kids like Peter making their sats drop and pressure rise. On the opposite end of the spectrum it could be heart/lungs/etc. Today I am just sad - and tomorrow pick back up with moving forward. At this point we are going to get through the cold that seems to have got worse today, we will do an overnight O2 sats study and home, and then in July go back for another echo. We are going to try and schedule an overnight sleep study for later in the summer to see if adenoids/tonsil/other are complicating it further. Doc considered putting Peter back on oxygen during the day - but recognized that would be about impossible. So for now we have doubled his oxygen at night and need to check his sats, etc. What can I say - I'm sad - I really thought we were through this challenge. Doc said we will be dealing with this the rest of Peter's life - he will have to go for regular cardiac check ups for ever. Sort of daunting really. Can't hold onto that "when xyz happens, this will be over". No such thing as really getting over it - but I still hope it will get better and he can lead a normal life off of oxygen. Prayers please!! 

The pro: Peter is getting closer to walking!! Now - keep in mind, closer in our world means much longer than with a typical kid.... but he is working on it! He will push anything that moves and getting quite fast at it. He is cruising where possible and bear crawls all over. His latest challenge is working on balance. He will push or pull up to stand and then just stand unassisted. Lasts but a couple of seconds - but he is sooooo proud of himself. And he does it constantly! He just continues to persevere and fight forward. He is trying so hard to talk and trying out sounds. He added "hungry" to his sign language repertoire. He's doing better with eating (knock on wood) - and is feeding himself off a fork. We put the food on the fork - he will put it in his mouth and pull the food off - then he will put the fork down as a sign he is ready for more food on it. He loves steak and any pasta with alfredo sauce.... just like his dad!  

      

Anyway - John, Michael and Alexandra are now home. It is late - I can go to bed knowing all are home safe. Peter is tucked with his oxygen on. Jack and Tommy are finally asleep - but in my room - so John is carrying them to bed. I got no sleep last night after the cardiologist - so hoping for a bit of restful sleep tonight. I am including photos - but think I am missing some on my PC. So please check out the blog again for more photos and will try to get more posted in the next day or so.  

Love to all - catherine

Happy Easter!

Where have the last two months gone?? My goodness.... sorry I have been so delinquent. My new job is keeping me very busy - but challenged and very happy! Thank you God!! Kids schedules have been a bit crazy too.  

Alexandra is in 8th grade, and doing soccer for the last time at Corpus Christi. She also has youth group, confirmation and is in the school melodrama. We are very excited that she got accepted into the college prep HS in town - St. Mary's.  

Michael is doing wrestling again this year after some back and forth thought. The first match he lost by quite a few points, so he was not too happy. He came back with a vengeance and has lost only one match since. All others he has won by pinning his opponent in the first period. He's developed this technique that has really boosted his confidence, and clearly works. Since I stress out watching boys wrestle, I appreciate the swiftness of his matches now. His record was finishing the match in 13 seconds - way to go Michael!  

Jack's little heart was broken. His "long term girlfriend" Elizabeth has moved on to someone else.... Jack was devastated. He went through ups and downs expected of teenage crushes - but has come to the conclusion that she will come to her senses one day and come back - he just needs to wait. Oh goodness!!  

Tommy... finally potty trained!! Jack was a nightmare, but Tommy just didn't care. All the best bribing did nothing to curve his lack of interest. When I asked him what he was going to do when it was time to go to college he would say "Take diapers with me!". But then one day he woke up and decided he wanted to wear underwear and has ever since then. It just clicked..... no trial and error, it was just done. Oh thank goodness! Our budget appreciates only having to buy diapers for one.  

Peter.... well, little man is still bear walking about everywhere. He's cut down on wanting to walk now that he is getting faster and faster. But, he pulls to stand on everything, is cruising around on furniture, walls and cabinets. He is still a total peanut (maybe 22lbs) and short.... but tall enough to open drawers and dump them out. Tall enough to reach up on the kitchen counter and pull off bowls and send them flying. His technique should lend itself well to discus throwing, but the bowl shattering on the floor is not a pretty sight. Then again, I was almost brought to tears when he reached over his high chair to the kitchen table and sent flying the ceramic bowl I had hand painted. That deserved angry eyes from me.... but I wasn't able to keep them long as he charmed me with his angel eyes.  

This weekend was a big move!! Peter moved out..... that is, last night was the first time since Peter came home that John and I haven't had a roommate!! The crib, changing table and all his clothes moved down the hall and in with Tommy and Jack. So the three little boys are sharing a room. It's a bit crowded, but with Peter's second birthday right around the corner we felt ready to let him graduate. I think he is glad to have a new space to hang, and hopefully it will allow us to get him into a routine closer to the other boys. Peter is a bit of a night owl often up till 11pm or so. Fingers crossed going into longer days he can still start going down a little earlier. John and I need some couple time!!  

Think that gets us somewhat caught up.

HAPPY EASTER!! 

catherine

Gingerbread bunny house - by Alexandra

Egg decorating with Tio Greg & Tia Brenda.... thank you for organizing it!!

    

Catching up with January

Where did the last 3 weeks go?? My goodness.... unbelievable that Peter and I got home three weeks ago this upcoming Monday. Things have been non-stop go since then!! And suffice to say the proof is in the laundry. If I don't do at least a load a day I am messed up - and I have not done a load a day.... so right now I am battling Mt. of Dirty Clothes!!

So to catch up for January.....

a) PERU - I miss it so much!! The food, my friends, my parents, the beach, the sound of the ocean, the warmth....home! Peter and I both had a great time and really could have used a few more days there. My last day there - the day of my planned launch off the side of a cliff attached to a parachute did not happen, there was no wind. So we shall save that for next time.  I am going to attach photos tonight even if I am up till midnight!

b) Michael's birthday - our man is double digits of one - I can't believe he is 11, and to me a spitting image of John in every way. I was glad to be home to celebrate, even if still worn out from the trip. Michael picked Carraba's for dinner - a family favorite. Of course, we left with a collection of pizza dough creatures. 

c) Ice Fishing - the weekend of MLK, John went on his annual ice fishing trip to the Gunnison area. John has been doing this pretty much since we moved to Colorado - but this was the first year Michael went with him. They headed out on Friday afternoon and fished Saturday and Sunday. While John was skunked (did NOT catch a thing!) Michael was more successful actually catching the biggest fish one day - way to go Michael!! They did stay up an extra day this year, and on Monday went skiing - first time for the season. I think Michael came back with a bruised behind, but enjoyed every minute of his weekend with John. 

I stayed in the Springs with Alexandra, Jack, Tommy and Peter. They were wonderful. My relax came when I met my friend Anne for Starbucks and we spent hours walking through the shops checking out all the sale items.... it was glorious!! The kids and I worked on some projects around this house, had too many trips to Wal-Mart, but ended the weekend with a fun afternoon at the zoo.... it was HOT!!

d) Michael - basketball season has started. Michael really enjoys the sport and it really gives him an opportunity to bond with some of his classmates. The first game was even attended by three of the girls as impromptu cheerleaders..... the boys won't admit it, but I think they liked the attention. 

Aside from that, we have been running around like crazy. Work is hectic, school is hectic, and schedules are hectic. Last night we enjoyed dinner with a family who received a pre-natal diagnosis - just like we did with Peter. I think we've made new friends! I really enjoyed their company, and looking forward to meeting their little girl when she comes into the world about a month or so from now. Tomorrow I start back up with the Colorado Springs Down Syndrome Association - and back into figuring out how to improve the opportunities for our kids. Our "Fostering Hope" group from church just got a new family to support - so I must brush off my casserole recipes and start mass producing meals again. I hope they enjoy them as much as the last family did. So, I can see 2009 will continue to fly into full swing. This being Alexandra's last year at Corpus Christi also presents new experiences for us. 

I hear the dryer beeping.... another load should be ready! I am going to cut this off for now and attach pictures shortly. 

God bless, 

Catherine

ps. My friends in Peru talked me into Facebook....so if you are out there look me up! I could always use a new friend!!  John is also out there - in case you prefer to be his friend :-) 

Michael's First Jam!

Just a quick post to share that we now have 3 jam makers in the family. I learned from a dear friend (Barb) several years ago and it fast became a family favorite. We are besides ourselves when berries are on sale - as they were just recently at our grocery store. I stocked up on Raspberries and Blackberries to whip out a quick batch. Michael has in the past helped me crush the fruit, and offered once again to help tonight. I was cleaning up from the raspberries and getting ready for the blackberries. Well, one thing led to another and Michael made the batch himself from beginning to end.... and he had fun doing it! Alexandra is hoping berries will be on sale again soon so she can make more, and I hear John in the other room saying he wants to help.  It is just one of those warm and fuzzy moments knowing you've shared something your children will take with them and teach their kids one day. Once Jack, Tommy and Peter all learn how to make jam we'll be able to open a jam store! And it all started with Barb teaching a group of ladies how to make strawberry jam four years ago! Thanks Barb!!

Good night - 

catherine