Peter - CarePage - October 15th, 2008

Cardiology says......  GO FOR IT!

Just a quick update from my elated update last night - even more elated this morning. Talked to Dr. Duster's back up and he said this was great news. He told us to go for it! He didn't burst my bubble - he let my bubble fly free!! Talk about one blessing after another....wow.....who knew we could get so much in such a short period - almost overwhelming. He wants to do an echo on Peter at the end of the month - so we head in on the 27th for an afternoon echo with Dr. Duster. We are so excited!!

On another Peter note - he started feeding himself finger foods! It is as if he has all this reserved talent he's been waiting to let shine at the right time. He loves his little dehydrated yogurt bits - and has figured out how to pick them up and put them in his mouth. He also got a molar this week. So now he has two little teeth on the front bottom, three big teeth on the top front, and a molar in the back.

Thank you again for sharing in these miracles with us!
God is so good to us!!!
catherine

Peter - CarePage - October 14th, 2008

YA-HOOOOO!!

I am so hyped up right now I could go stand outside and scream from the top of my lungs - but chances are the neighbors would think something horrible happened. Instead - Peter had a PHENOMENAL visit!! I am so incredible excited. His oxygen saturation was good on and off oxygen, so Dr. Abman wants us to take Peter off oxygen during the day and put him only on it at night - see the next echo in January and consider pulling it all of then if the numbers are still good. I am so excited I can't barely put my thoughts in words. Now, I am trying to calm myself down as I want to make sure the cardiology side is cool with this.....called Dr Duster and he had just left today for Vietnam and will be gone for 2 weeks. His partner is in tomorrow - so will check Peter's sats in Colorado Springs and then report them tomorrow.

So here is how it all went down - we got to the hospital and I asked for the paper work to go get Peter's chest x-ray. They came back and said the doctor didn't want one any more....hmmmm.....I thought either very good or very bad but was optimistically leaning to good. We went back and had Peter measured and weighed and vitals taken. He was fully clothed so this ups it a bit but he was around 21.5lbs dressed and still a stocky 29.5 inches long. His vitals were good. Then they took his sats and the numbers were low - I told the nurse I knew they were wrong!

We then headed into the exam room for the visit. Dr. Abman came in with a respiratory therapist who wanted to do his sats again. They hooked him and voila great numbers that matched what we get at home. They decided to take Peter off the oxygen and see how he responded - his sats dropped as expected, but then surprisingly in less than a minute bounced right back up to where they had been when on oxygen. They just stood there watching the monitor and grinning at Peter. They asked about Peter's echo and when I shared the results they were besides themselves! They said they just didn't expect such an improvement in Peter in such a short period of time - and that this was indicative to how resilient his lungs are and how fast they are healing. Confirmed without a shadow of a doubt that his pulmonary hypertension was/is reactive and that he has healed rapidly with his current treatment.

Then we talked about the overnight oxygen saturation test we did about a week or so ago. Dr. Abman talked about how most kids with DS have trouble at night because the low muscle tone is worse when they are relaxed and sleeping. However, Peter is sleeping soundly, maintaining solid saturations and showing (at this time) no indication of airway obstruction, etc. He actually said the sats were so high, it showed Peter was probably getting too much oxygen. WOW. I explained that Peter is a tummy sleeper and he said that was probably helping Peter and improving his breathing at night. He said until we see him develop issues with night time there is no need to do an extensive sleep study.

Finally, he said that we could either lower Peter's oxygen or take him off it at day and back on at night - the second being his preference. Then he leaned down and looked at Peter and said "you're doing great Peter" to which Peter responded by smiling and clapping! He said he wants to see Peter's next echo results but figures unless things change we can just talk on the phone and don't even have to take him back up. Even better! Now, if numbers drop we will have to put him back on - but no reason to expect that unless he gets a cold or something.

Tommy had come up to TCH with me, so we headed out happily and loaded up in the car. About 5 minutes into the trip Tommy screams out "Peter pulled his tubes off"....and for the first time I could say "It's ok Tommy, he doesn't need them now"....I think Peter was making a point as he dramatically ripped them off his face and started laughing!

So many, many, many prayers of thanksgiving are due today - and of course a few prayers that cardiology won't burst this bubble tomorrow. Will let you know.

Yeah! Yeah!! YEAH!!!! I held Peter and was almost in tears being able to just hold him and kiss his cheeks - I can now sit and kiss his cheeks!! - something I've only been able to do when we are changing out his tubes. I've waiting for 17 months to do this - and what a great feeling!!

Thank you again for all your support!! Will try and post pictures in the next day or so.

Love,
catherine

Peter - CarePage - October 13th, 2008

Peter's Hi's and Lows!

Hope you caught it! Peter's HI's and BYE's for that matter. Little man has become quite the expert at greeting people and waving goodbye...and for the most part gets so excited he waves very energetically with both arms. Often his little face will turn read as he strains out the word HI. Actually, he says HI for both coming and going people, but it sounds and awful lot like "hhhaaaaa". He is so proud of himself - and so he should be. And everytime you tell him "good job Peter" with any degree of excitement in your voice he will stop what he is doing, but a big happy smile on his face and then clap for a few minutes. He is so cute!!

And the LOW's....well....Mr. Peter is working really hard on pulling up to standing. One morning John and I were struggling to wake up, we tossed and turned and could hear Peter doing his morning exercise. At about the same time he seemed awful clear to both of us - we jumped up and then was Peter half standing and half over the edge of the crib. It gave us quite a fright! We shared it with Liz, our neighbor who comes over to babysit the kids when John had golf tournaments, so she put the crib mattress down another level to avoid him jumping out after his nap. John reported that today, when he went to wake Peter up - Peter was pulled right up into standing in the crib - way to go Peter!!

Now for everything in between -

• Feeding: well, Peter was doing great and eating lots of textures. This weekend he went on strike and decided to blow out as much as you put in his mouth unless it is his toddler puffs or dehydrated yogurt bits. Did I mention a whole package of those has less calories than a jar of dinner? Well, today it was as if we were playing a dinner game - I would give him a couple of puffs and then sneak in a spoonful of dinner. Then he would figure it out and try spitting out right after swallowing. We did this until I saw him eyeing the peas on my plate....well, we started off with one, and then kept going. I believe he ate darn near a cup of peas for dinner. He may just be telling us he is done with baby food and ready for table food - we shall report! I suspect teething is contributing. We have been stuck at 5 teeth for a while so surely there is a companion waiting to pop through.
  
• Crawling: still getting up and rocking on all 4's but not yet figured out the whole process. Plus army crawling, trying to stand and rolling/climbing over anything and everything is more fun.
  
• Bath time: Peter graduated out of the seat we had - well, John graduated him because he was tired of putting the seat in and taking it out all the time. I guess I was babying Peter with it as it appears he just didn't need the seat at all. He is doing great on his own - and of course loves it if the other boys are in with him.
  

Last thing, Peter has his Pulmonologist appointment at The Children's Hospital (TCH) Tuesday 10/14. We will be seeing Dr. Abmen whom we have not seen but our friend Pam talked very highly of....so I plan on posting more tomorrow and letting you know how it goes. We are prayerful and hopeful that we will see even more progress and be just another step closer to getting rid of oxygen. Please lots of happy prayers and vibes for Peter.

Love to all - thank you for your support!
catherine

Peter - Carepage - September 28th, 2008

A day at the lake!

Well, I just wanted to post an update to tell you how great Peter is doing. What finally got me off my behind to do it was that we went to the lake today and Peter had a great time. It all started with my creative husband. He tends to just find or end up with things for free....amongst them an abandoned kayak at our old town house complex. Well, he tested it for sea-worthiness in our swimming pool - and today we took it out on the lake. We tied it to the top of the van and slowly headed up into the mountains hopeful it would not fly off the top of the van. We enjoyed lunch at the resevoir, tried out luck at fishing, and took turns in the kayak. It was so nice to be outdoors. In all our wisdom (or lack there of) we left home without sunscreen. Well, we are all a bit pink in the face....including Peter who has tan lines on his face where is oxygen tube was taped. I am going to update our blog after this so that I can post more pictures - the leaves are turning in the mountains and some of the aspens literally looked like they were on fire! Here are some pictures from the trip - I only wish they would capture the colors as we saw them....

But back to Peter - can I just tell you how proud I am of my little man??!! He just brings me so much joy. I was just telling a friend that he is the child I never knew I wanted, but the one God knew I needed. His joy, perserverance, and huge heart inspire me! He is so loved, and in turn loves us all so much with his hugs, kisses and big smiles.


I am on a distribution list for the local Down syndrome association, and this week there were a lot of e-mails back and forth about feeding challenges. There are parents with kids in the 3yr to 5yr age range that are still struggling with feedings and only eat select puree food. And while I think I am the mom with the youngest child on this group, I was so proud to share how well Peter is doing. And I did one of those look back in time things again....a year ago I was in tears when Peter would refuse to eat. I was afraid we would need to get a g-tube. I just wanted to close my eyes and jump into the future when all those issues would go away. And guess what? I am there. Yes, Peter is not eating steak and potatoes but probably would if you gave him a chance. He is doing so awesome! He is loving textured foods, will about rip anything out of your hand, and seems very interested in what others are eating. He is gumming food well, and using his tongue to shift food around his mouth. He even had part of a tortilla chip the other night while we were grilling. Today he had a few chunks of chicken meat. His favorite is now the toddler dehydrated yogurt bits they sell at the store.....did you catch that? TODDLER!! Peter is eating TODDLER food and taking huge strides every day! We still have a way to get him to self feed - but he has even tried a few times to grab food and bring it to his mouth. We have a way to go - but slowly but surely that too will be a thing of the past.

Mr. Hyper-active Peter Bear is into EVERYTHING....and has been for a while. He has completely mastered moving from sitting to laying and back without the need of any support. He is getting up on all 4's and rocking back and forth a ton!! He also crawled over to the couch last night and successfully - with no help needed - pulled up into the standing position three or four times. Oh my goodness - I was so excited! I hope it doesn't feel like I give you the same updates time after time....and I realize it takes a while to hit each milestone - but because we see Peter work so hard to reach them that we must rejoice! When I take the time to just watch Peter do his stuff and work on what he is learning in therapy I just want to shout from the mountain tops how I was blessed with the most amazing child! I love all my children - but Peter has touched each of us so much more than we ever knew he could.....WE LOVE YOU PETER!!

Ok....speaking of little man - he needs some cuddling....ok, Mama needs some Peter cuddles.

Good night - love to all,

Catherine

Peter - Carepage - September 8th, 2008

IT IS A MIRACLE!!!

Ever reached one of those times where you really needed a sign? Well, John and I had both been feeling restless - the need for some clarity. It started Sunday with Alexandra and Michael having to Altar Serve the 7:30am Mass. Rather than wake all the little ones after a late night with my parents - we left them home with Granny and Grandaddy (aka Grandpapito). John and I honestly can't remember the last time we got to really enjoy Mass as a couple not worrying about kids going wild in the pews. The readings were poignant and the homily inspiring - we had a gee-wiz moment. In the evening we prayed the Rosary - and during one of the readings it talked about praying to Mary to intercede for us on our wordly needs. Well, I prayed about evey Hail Mary asking for Peter's healing.

Today we had Peter's cardiologist appointment and a miracle was delivered! For the very first time in Peter's short life his pulmonary pressures were NORMAL.....yes - NORMAL!! The nice echo technician was keeping a poker face, but she knows by now that I ask questions. Half way through the echo-cardiagram I asked her what Peter's pressures were and she said 22. I could not believe my ears....I said "you've got to be kidding me!"....to which she responded "No...I was so surprised myself I've measured them 4 times to make sure they were right!". It took every ounce of self control to not fall to the floor in tears - tears of joy! I could barely contain myself as I choked up and a few tears ran down my cheek. Truly - once again - when we mosted needed it God provided a miracle of healing for our little angel on earth. It seems every miracle Peter has received over his life has been after a true heart felt prayer to our Mother asking for her intercession.

(Peter during his echo)


(Peter during his EKG)




WE ARE SO PROUD OF YOU PETER!!

After the echo we headed over to the other side of the office to see Dr. Duster. He came in and first words out of his mouth where "what have you done?" He was thrilled but honestly just as surprised at how healthy Peter is compared to prior visits. Just to put it in perspective - before Peter's heart surgery his pulmonary pressures were in the upper 90's on a good day, and over 100 and something on a bad day. After the surgery he dropped into the 80's and a few weeks later he was mid 40's to 50. And he stayed there and stayed there and stayed there. Given the altitude we live in, they accept 35 as the upper most end of "normal" but healthy normal is in the 20's. And that is where we were even with Peter being off of oxygen for an hour or more. His saturations were a little lower than hoped but at 93% much better than what we've encountered before.

So next steps - after lots of prayers of thanksgiving! - we lowered Peter from 1/2 liter to 1/4 liter of oxygen. We are to measure his sats at home and may be able to bring him down to 1/8 liter. We are scheduling an appointment to get him up to The Children's Hospital in Denver to see the pulmonologist again. He needs to get Peter's lungs x-rayed and possible adjust the treatment plan from that perspective. Our goal is to get Peter's sats to be 96-98%. We go back and see Dr. Duster (cardiology) in January. If at that time Peter's holding good sats and his pulmonary pressures are still normal (on room air) we will be able to take Peter off oxygen during the day - and leave him on it at night. Then give him some time to adjust to that. Once that is stable, we will likely move him completely off of oxygen...so honestly a sensible step down program! He said with other kids they can do that progress in weeks, but with Peter we want to take our time to ensure the success. WOW! There are not enough words to express how in awe and relieved and happy and proud and everything else I am today!!

My parents were with me during this visit. They met Dr. Duster about this time last year. During that visit I cried the whole way home - desperate and frustrated because the news wasn't getting better and the prognosis seemed so dismal. And today, we drove home and once again I had tears - but tears of joy at the gift of this miracle. Our Peter Bear - our little angel and walking testament to the love of God!!

Please - offer up a little prayer of thanksgiving for us - Lord knows we've showered him with requests for healing - we should swamp Him with prayers of thanksgiving!!

Love to all!
catherine

Peter enjoying time with Grandpapito & Granny!

Road Trip to Rapid City

PETER'S FIRST ROAD TRIP!

Peter officially ventured out of the state of Colorado 'over the hills and across the river to grandmother's house'! Despite a crazy week that had me in New Hampshire Monday through Thursday, and Denver on business Friday - we loaded up and headed to South Dakota to see John's parents. Peter traveled in luxury having graduated up to a big boy car seat finally! We left late and arrived in the wee hours....2:30am on Saturday to be exact - John and I were the walking dead at that time!

It was all go all weekend....thank goodness for Starbucks! Saturday we took the kids to "Story Book Island" in Rapid City. This is a park with statues and small attractions based on different story books - from Thomas the Train, to Winnie the Pooh, Pinochio and so many others. It was HOT that day. Peter pooped out at the park (I think from the long ride they night before) and slept through it all. Alexandra and Michael remembered the park from prior visits - so they ran Jack and Tommy around to the different attractions. I myself have been there once before - Thanksgiving in sleet.....so the 100+ degree weather was a welcome change. Tommy and Jack were extremely excited to wrap up our stroll by getting cowboy hats. Sidebar for a second - Jack and Tommy's treat every weekend is to go to our local King Soopers stores to ride the penny horse ride. John insists I have lost my savings with the price of gas - but often the cooperation I get on a Saturday morning is rewarded with whipped cream from Starbucks and a few rides on the penny horse ride. Tommy likes the big horse at one store, and Jack the smaller double horse ride at another....so there is some drama there! However, the two boys and I had been on the look out for cowboy hats they could wear to ride the penny horse - and now we have them! And just in case you are wondering about the picture with Winnie the Pooh below - yes, that is Tommy; yes, he likes primary colors; yes, he dresses himself! And in the whole trip this was the one day he survived without wearing his favorite red M&M t-shirt...although he did insist on putting it back on after bath time!

Then we headed off to Canyon Lake Park - close to the golf course where John learned to golf. We enjoyed lunch outdoors and Peter perked up great. He was starving and ate like a champ in the outdoors. We then headed over to the creek/river so that John and Michael could go fishing. Tommy and Jack played around. Alexandra's highlight of the trip was sliding down the spill way. Michael was petrified and after a minor melt down at the top of the spill way eventually took the plunge. Not sure he will do it again, but Alexandra will not doubt be taking her kids down one day. Peter enjoyed crawling around and climbing on us all. And - for the first time - completely on his own moved from the laying down position to the sitting position WOW!! Of course I went wild taking a million pictures - wish I could post all of them here!

We wrapped up the day with Mass at Grandma's church. The kids were worn out, but there are so many wonderful people who have been praying for Peter - that it was great to show him off! It really is amazing when we think not only of the power of prayer - but of how wide spread the web of prayers for Peter have been - I would say spanning the globe including good old South Dakota! Talking of spanning...well, spinning....here are some shots of the little boys mastering the skill of hoola-hooping.....and long lost skill among today's younger generation if you ask me!

Sunday was our hiking/national park day. How many of you have seen the "National Treasure 2" movie? Well - we recreated the movie. In the morning we headed out to Sylvan lake somewhat behind Mt Rushmore. That is the scene in the movie where they open the entrance into the temple of gold, etc. Anyway....after doing much research - which really just involved watching those scenes a hundred times over - our kids were thrilled to see John had figured out the appropriate location of the filming. And - amazingly enough they climbed the same rock formations and after much searching found the hole in which Nicholas Cage stuck his hand. Amazing!! The views were spectacular and we got lots of walking around the lake in. Peter rode in the backpack and really was a trooper enjoying the fresh air.

After fishing, hiking and taking the paddle boats out (thanks Grandpa!) we headed over to Mt Rushmore. Tommy was the most excited and keep wanting to get closer to the "big heads in the mountain". He talked to them and of course waved big good byes when we left. He is still talking about the "heads"! We also went through the exhibits they have there....and Alexandra in true tradition of the ladies on my side of the family could have spent the whole day in the gift shop picking things up, putting them down, trying them on, walking around and somewhere hoping someone would hand her a lot of money to buy all the items she fancied! The younger boys spent time dancing on the colored blocks in the cement floor. However, the highlight was the exhibit where you can blow rock up....so in the museum area they have an old fashion detonator - you push down on the handle and a video screen shows rock blowing up. The boys remembered it from last time and I think they could have spent all afternoon blowing up virtual rock! We wrapped up the day with a homemade spaghetti dinner joined by John's niece Shannon and her boyfriend. It is hard to believe Shannon is now in college as she was younger than Jack when she came to John and mine's wedding in Florida so many eons ago!

John got up early Monday with his dad to golf. Of course it rained! But they persisted and got all 18 holes in! Grandma and I took the kids to play in a swimming pool/water park type theme park at a local hotel - it cost an arm and a leg! Peter slept, Tommy rode the lazy river once and then wanted nothing to do with the water, Jack made lots of friends hanging out in the hot tub (really not sure what that spells out for his future - oh Lord have mercy on the girls he fancies one day!). Alexandra explored the most and loved getting soaked. Michael got every penny worth of that experience by climbing the stairs and shooting down the slides for almost three straight hours!

We then headed back home....and finally got home around 10:30pm. We were exhausted. We took the scenic ride home and actually saw incredible amount of wild life. The kids most enjoyed the huge herds of buffalo.....of course we were not quite so amused when the buffalo decided to nap in the middle of the road - hmmm....how close do you really want to be to a sleeping buffalo who wakes up grumpy. John really didn't think our insurance company would buy it if our minivan lost a battle to the buffalo! Thank goodness all ended well!!

(and for the record - no - I didn't get out of the car to take the picture of us passing the sleeping buffalo on the road - that is the car in front of us.....just in case you doubted my sanity after what is clearly an long period of sleep deprivation and a lot of fresh air!)

Back to Mr. Peter given that this was his first trip out of town other than Denver. Rapid City is a lower altitude than Colorado Springs by several thousands of feet and we really believe it made a difference. Peter's coloring was better, his appetite and feeding was better and his energy was through the roof - honestly you would have thought we had him on a caffeine drip. At 11pm we were shutting off the lights and rocking him till he finally would go to sleep. Now, unfortunately I forgot our pulsox probes at home and we didn't want to risk going to the hospital and being lumped with an unpaid out-of-network claim.....yes even us people in the insurance business worry about our claims not being paid! I probably should have lowered Peter's oxygen level as we got lower, but without any readings we left him at his same O2 levels. I think we may have given him too much which would explain the hyperactivity. Since he got home he is back on a more normal sleeping schedule. We have our next cardiologist appointment next week so I will give him our annecdotal experience and let you know what he says. I honestly have mixed feelings. John and I had somewhat decided to try our hardest to stay in Colorado assuming that we could get Peter stable here by the time he turned two - but the change was quite significant. Now, we really weren't there long enough to get a true reading on his improvements - but it does confirm in my mind that a lower altitude may be required. Other Peter highlights - Peter did push into the sitting position on two other occassions - and then today pulled himself up to standing at the couch (after the cushions were removed). And, as if that weren't already enough for this weekend - Peter's 4th tooth came in....so now we have two on the top and two on the bottom!! YEAH PETER!!!!!

OK. I have to go to Denver tomorrow....so better get to bed! I hope you enjoy our pictures....if I have time I will put them all in a slide show and add them to the blog some other time. And one more request - please pray for my parents' safe travels. God has kept them safe despite the hurricanes in Florida where they have been visiting. They were headed back to Peru at the end of this week - but surprised us today by letting us know they are coming up to Colorado! We are just besides ourselves with excitement at their visit. They get here on Friday and will stay just over a week. I have a feeling they won't recognize the kids as they have grown so much over the last year!

God bless you all!

catherine