Peter - CarePage - October 31st, 2008

Happy Halloween (Almost All Saints Day!)

    

What a beautiful day in Colorado! I can't remember the last time we had a balmy trick-or-treating evening. Normally we are bundled up to the tee and have chili waiting for us. Today was bootiful (ha ha)!! The sky was blue and the air warm. John took the older 4 kids trick-or-treating down in the Broadmoor area of town. Rumor had it that the folks there handed out king size candy.....for those non locals these are the biggest and most expensive houses around. Well, the rumor was true and the kids came home with bags and bags and bags of king size candy. Alexandra was practicing her upcoming role in The Lion, The Witch and The Wardrobe - a hag in the army. With a green and black face - and all dressed in black - she was scary. The we had little Darth Vadar and big Darth Vadar. Michael has been wanting to dress up alike with John for years - and this year they did it.....Darth and mini-Darth with the heavy breathing and all. Jack decided to be the Ninja he picked out last year and scrapped at last minute - fortunately the costume was plenty big and he enjoyed it! Tommy recycled Jack's favorite costume of all time - a bumble bee coat that even has a stinger! And then there was Peter - in the most recycled of Halloween costumes - a Winnie the Pooh that started with Michael. WOW - 10 years later and the pooh voice recorded into the costume still works!!

I have added a few pictures of Peter in the photo gallery - so please check them out.....Peter tubeless!! YEAH!! Peter and I didn't go out into the dark - we stayed home lighting candles (don't have to worry about oxygen explosion anymore!), baking lasagna and making up hot apple cider. We handed out candy to the kids that came over. All in all we had a wonderful relaxing evening. And we reflected on this time last year....it was more than just the weather that was different. Peter is a whole different child. This time last year Peter was working on holding his head up, he was still learning to eat orally, had a feeding tube and oxygen. He was small. Now he is a strapping hyper active little dude. He wants to move and play. He may not be walking, but that doesn't stop him from getting around and getting into trouble. Nothing is safe with little fingers!! And I wonder about next year.....what will Peter be doing next year??

And just a quick update - got a call on my cell from Dr. Abman. They are submitting the paper work for the overnight oxygen test at home. We should get that next week sometime I think. Then do it right away and send it back. I am convinced it will be great. In which case we can take Peter off of oxygen at night. It seems so petty - but it makes the trip to Grandma's for Thanksgiving SOOOOO much easier. No lugging the huge concentrator, extra tanks, lots of tubes, tape and cannulas up to South Dakota and back. I can't tell you how freeing it is to be able to just pick Peter up and go. I feel so carefree!! And it is so much easier to run an errand and just take Peter with me. I LOVE THE FREEDOM!!!

Will keep you all posted on Peter's progress. This week he has started to take off on eating with a spoon on his own (sort of) which is great. I have to make sure the spoon makes it into the jar by positioning the jar just right....we have food all over the place....but Peter is so proud of himself. Sometimes he still wants to be pampered and fed, but it is exciting to see he is really understanding the concept of self feeding.

On a completely different note - one of the kids stepped on my purse which had my eye glasses in it. I was wearing my prescription shades at the time. I was so upset. I knew their days were numbered as they are on child #4 ripping them off my face and twisting them in the split second before I recover them. Anyway, I had to drive this afternoon. I put some contacts in.....oh goodness - my eyes feel horrible and I can barely see right now. So please do excuse any typos - i feel almost legally blinded by these little plastic things. I think I need to get some new glasses.....maybe I'll get myself some Sarah Palin glasses - I hear they are selling like hot cakes!

Have a spooktacular evening!
catherine

Peter - CarePage - October 28th, 2008

Pulmonary Hypertension.... Resolved!

The words we were waiting to hear - "Pulmonary Hypertension - Resolved"

Peter had his appointment with Dr. Duster today. I had a client meeting in Denver which I ended up having to walk out of so that I could race down and meet John at the doctor's office. They took us back, and we did Peter's usual strip tease for the pretty echo technician. She turned on the Baby Einstein video. Maybe, just maybe, this time Peter would be interested in watching it. Nope.... not really interested. Instead he tugged at my earrings, tried grabbing the cord of the probe and generally tried wiggling right off the table. I whispered in his ears, but could barely hear my words because my heart was pounding so loudly in my chest. I keep glancing over at the screen reading numbers hoping I could guess which was the pulmonary pressure - there were numbers all over the board which only shortened my breath and quickened my heart.

Finally, I swallowed and took a deep breath. In an attempt at a cheery voice I said "So, what are Peter's pressures at today?". "She's used to me asking" I thought, surely this will be no different than any other time - and I just need her to tell me which of all the numbers I saw was THE number. "Well" she said, "I'm not sure what numbers you are used to so I'd rather Dr. Duster discuss these with you". My heart stopped. i stared at her - was there a smile? Did I miss an encouraging tone in her answer? "Why can't you tell me this time??" I wanted to yell! They've had no problems telling me before - why not this time?? I looked over at John. He was entertaining Thomas. I honest felt the world swirl around me..... my head was screaming "JUST GIVE ME THE NUMBER!"

We headed back to another room for another nice technician to come in and check Peter's saturation rates, vitals, etc. I stared at the machine - I was willing the numbers to be spectacular. A 95 keep showing up.... "how can that be? at home he's 96 to 98!" At that point my obsession with a single percentage was intense. She seemed happy with the 95. Well, ok, but really - I just want Dr. Duster with the gosh darn pulmonary pressure!!

Finally he arrived. He was clearly jet lagged from him trip to Vietnam. His eyes weary, but his smile big - I hoped this was a good sign. We struggled back and forth trying to share information. Finally I was going to get the pulmonary pressures.... "twenty four to twenty seven" he said. Oh no! that was up from last time....should I panic or should I not? Gulp. "So?" I uttered. He looked at me at me and said "which is normal for us here in Colorado Springs, and in this case normal is good because there is nothing better than normal". The world stopped swirling, my heart didn't seem so loud, but I know Peter wanted me to not grip him so tightly.

Then we discussed next steps..... and much to our surprise Dr. Duster was advocating just getting rid of the oxygen because keeping Peter on tubes was going to impact his development. We talked about keeping Peter on at night, or taking him off. We decided to contact The Children's Hospital again and talk to Dr. Abman. Give him the results of this echo and schedule an overnight oxygen saturation test off of oxygen. If that comes back normal, then off of oxygen we go 24/7!! A follow up echo in 6-8 weeks after we pull the oxygen to get our final seal of approval.

Dr. Duster always records into his little machine before he leaves the room - dictating his notes and occasionally asking us a question as he speaks into the recorder. I always wonder about the person who listens to it. Then again, I've been told it is a software that interprets and generates a document. I like to think it is a little person sitting at a keyboard carefully listening to each word. Someone on the other end of the recorded message who now knows Peter and cares about what this message would say. The same routine as usual as he recorded the message - Peter's age, weight, sats, pressures, etc. Then something nice about the parents. I joke that him saying "Mom asks sophisticated questions but we are now on the same page" is key code for "Mom is a pain in the rear and asks too many questions'. But, he recorded his nice message about our family and then does his final section. He reads off each of Peter's medical diagnosis and the status. I know this piece - ventricular septal defect - residual blah blah blah as down the list he goes. Then he gets to Pulmonary Hypertension and he says "pulmonary hypertension" silence, silence, silence followed by "Resolved". Oh thank you dear God for this miracle!! After 17 months and 18 days we finally heard the words we've waited to hear..... pulmonary hypertension - resolved!! I have played those three words around in my mind for the last 9 hours! I thanked Dr. Duster about thirty six times - and I just wanted to say - "You Dr. Duster are the instrument God used to give me this miracle!". I did my normal greeting at the desk, waived at the lady in the back that used to work with me at PacifiCare, and I walked out. The floor felt light, the sun bright and I cried. I held Peter in my arms - whispered what a good boy he was and I cried tears of joy, tears of thanksgiving, and tears of praise. Thank you God for my little healthy boy!!

Pulmonary Hypertension - RESOLVED!!!

Peter - CarePage - October 20th, 2008

Sarah is back!!

  

For those of you following the Carepages for a while - you will remember that when Peter first came home, his physical therapist was Sarah Gaw. About a year ago Sarah, her husband Matt and their little boy Campbell moved to the Ukraine. Sarah & Matt work with an organization called Global Action based out of Colorado Springs. This organization provides non-denominational Christian support in countries all around the world. We had an opportunity to see them last weekend which was wonderful! They shared with us their experiences in the Ukraine - a very far cry from the life here in the US. They work in an area called Crimea and shared with pictures of the kids they have worked with there. Living at a camp called Hope Center, they have spent almost a year ministering and caring for very poor and orphaned children. It is clear that these children desperately need help! In addition to their daily work with children, they offer four summer camps where for 10 days these children can escape their daily struggles. For these short 10 days they have clean accommodations, they are kept safe, fed and clothed. It is a dedicated team of staff members and volunteers that give these children hope, and exemplify the love of Christ. If you would like more information on this remarkable ministry, or would like to consider joining or supporting Sarah and Matt you can reach them any one of these ways: mgaw@global-act.org www.global-act.org or www.coloradogaws.blogspot.com. These really are two remarkable young people that will make the difference in the lives of children that so desperately need it. Please keep them in your prayers as they journey back to Ukraine in the new year to do what many of us dream, but only few of us actually do - sacrifice our lives to serve others!

I did attach some new pictures of Peter with Sarah and Matt. You'll also see a pic of Peter with a early morning mohawk. I do promise to take some newer pictures of Peter tube-less and get them posted. John and I took the plunge and finally got a new computer. We switched teams and went with a Mac computer. So far I LOVE it!! I am still learning so bare with me as I master my new technology and get back on track with updates and pictures. I'm having a bit of a hard time getting things copied over to the blog - so that is outdated at this time - but I am sure I'll figure it out.

Speaking of tubeless Peter....I must confess....I felt like the worse mom ever. Peter was in the family room playing - I was trying to do too much all at the same time. I ran upstairs, downstair, outside, inside and in circles....then a panic attack kicked in. I could hear Peter but I could not find Peter! I called his name and he squawked back. For the first time in 17 months he didn't have a tube I could follow up find him. He had worked himself around the back of the couch and was just having a ball playing hide-n-seek!! No fair!! I'm thinking little mobile-leave-no-trail Peter needs to have a GPS put on him because he is loving to hide from me. After John and I set up the new computer late Friday, Peter hid under the desk. And he was playing peek-a-boo....at least this time he was popping his head out and laugh when I said "where's Peter".....it was so cute seeing his little platinum blonde head pop in and out and in and out from under the desk.

Now, confession time...again. I really need you guys to keep praying for Peter. I guess without the echo at the end of the month and the blessing from Dr. Duster I am still nervous that this is all too good to be true. Afraid that somehow for some reason this blessing will be taken away and Peter will have to go back on oxygen. I am so elated that he is free! (during the day at least) - but this little bit of me is still fearful and uncertain. He looks great, acts great, is having fun - so I feel bad for doubting this miracle. I am probably making no sense at all! So, since it is very late and I am very tired - I am just asking you to continue to pray for Peter and for us. It is so great to have Peter off oxygen during the day - I just don't want to screw it up and have to constrain him again.

Oh, oh, oh.....and on a different note - Peter, oh master of the yogurt bites, is having a great time self feeding and is awful close to wanting to do the spoon.....we are getting their slowly but surely!

Ok - need to go snuggle a very tired Peter.

Love,
catherine

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