Sunday, June 29, 2008

Peter - Carepage - June 29th, 2008

Can you believe it is almost July? I feel like summer is going to be over faster than I can blink! This Wednesday will be exactly a year since Peter's open heart surgery....who would have thought that litttle, scrawny, green haired, mohawk Peter Bear would come this far given all his challenges and obstacles. The strapping young man he has training for the Navy Seals or something - Peter is now a tall, happy, screeching, master army crawler. He's really taken off in the last week or so and actually has become quite adventurous. When we are upstairs he hangs out in the master bedroom (the room he shares with John & me!) while I run back and forth to the other rooms putting away laundry. No longer feeling the untold boundary of the doorway, Peter actually ventured out of the room on his own and comando style was super-secretely army crawling down the hall towards the kids room. WOW! That was the most awesome thing to watch. Now....he made it about 5 feet before getting cold feet, upon which he did a graceful pivot, roll, pivot (he get's perfect 10's for that move) and headed back to the master bedroom. Preferring the comfort of the untold boundaries, Peter can pretty much be found in any corner of our very large bedroom, and one time chased me into the bathroom. I need to teach him a lady needs her privacy! In addition to working on his mobility we are taking small steps forward with self feeding (have miles to go - seems like we take one step forward three steps back with feeds - but at least he is eating!). We are also taking baby steps in fine motor skills working on pincher grab and picking up smaller objects - and when sitting putting things in and out of a little pail....right now the thing goes in, we get frustrated that the pail ate the toy, the pail gets a good beating and then gets flung a few feet away during which time the toy falls out and Peter can grab it and we start again. Great indication of cognitive skills if you ask me - when in doubt use brute force! He's also started understanding peek-a-boo and laughing at it, as well as understanding that things are still around if you can't see them. I take the toy he is playing with, hide it under my hand or blanket, and he will lift the blanket or my hand so that he can get to the toy....way to go Peter boy! Last but not least - after weeks of fighting doctors, insurance and more doctors we have Peter's glasses! Now - we are excited because the blue brings out the sparkle in his little eyes....but Peter is not buying that! Most of the time he wants to be cool and wear them around his neck - but we when distracted (hush...don't tell him) we can keep them on for slightly longer periods of time. I am sure in Peter's world it is just one more thing on his face - glasses, oxygen tubes, tape and grips for the tubes, and twice a day steroid inhaler treatments....I'd be crabby about that! But, we figured over time he will get used to the glasses and hopefully that will improve his weak eye. I did post some new pictures - so check out the gallery! Love his scrunchy face as it is the first time we have captured that pose...and I just love when he gives me that face! Lastly, we are working on creating a blog for the whole family. The site is still under construction - but will keep you posted. We hope it will give us a little more freedom in updates, posting of pictures and honestly sharing our whole family - of which of course Peter is a very important and very loved part! Getting late and need to work tomorrow...ugh! Love to all!! catherine

"Mama thinks I look sooo cute in my glasses..."

"....I'm thinking not so much so!"

Tuesday, June 10, 2008

Peter - Carepage - June 10th, 2008

Wanted to give you an update on Mr. Peter....since we started thickening the milk two weeks ago he has gained a pound! He's moving up the charts and is now around the 50th percentile (DS chart) this rate they will give us a hard time about him being too big instead of too little! He seems to be doing better in terms of less coughing when eating, but he still intermittently spits up or down right pukes on us. While the swallow test showed aspiration during swallowing and not due to reflux, I think he may have a bit of reflux. Dr Duster our cardiologist suggested that we keep a close eye on Peter developing acid reflux - so one more thing on the never ending list...if I had known with Alexandra how much we had to worry about posture, motor skills, eating, lungs, heart, kidneys, etc she would likely be an only child! Peter had his cardiologist follow up yesterday and it was funny to see Dr Duster - about four or five times he was awful close to breaking out into a full dance as he chanted "I was right"....or "I won't say it again....but I was right!". He was very relieved that we have a "primary" cause for Peter's pulmonary hypertension and is optimistic that while Peter will always have a reactive pulmonary bed we are not (at this time) at risk for it becoming "fixed". He's suspected Peter was aspirating for 6 months and none of the other medical experts evaluating Peter I know to jump on his suspisions faster. Had we tested Peter 6 months ago where would we be today?? If anyone has a time machine please let me know! The echo and EKG pretty much showed the same results as over the last several appointments. Peter was not saturating oxygen as well (second appointment with a decline). Dr Duster noted it in his log as a concern, but felt with all else we are working on it wasn't something to pursue. So at this time our focus remains the thickened milk and this week we start Peter on his inhaler. His glasses should be coming in soon - so much moving forward we hope. As to our moving....well, who knows! John and I had a long talk and were taking steps towards that direction in terms of preparing the house and researching locations. Dr Duster however said he put us in the category of "could move" not "should move". Each doctor seems to say things just a little different that challenges me all over again. There still is a part of me that just wants to get Peter to an environment that will over all be easier on him than stay here and second guess my decision every time he gets sick or if he gets worse. But, on the flip side, we have good medical facilities and love our doctors. Our kids are set in school and we have a good support system with friends from work, church and the neighborhood....If anyone has any words of wisdom please let me know! I think my emotion about the change is stopping me from really being confident that I am hearing God's voice through the noise in my head. Where is that giant God billboard when I really need it??!! Promise to try and get new pictures posted soon. Peter in just the last day or so has really taken off with his army crawl so that is exciting. He has also started babbling all over again! It is funny - generally with kids with DS, when they are working on a skill they drop others. Then when they master what they were working on, the others come back. I think Peter has been working on the sitting and crawling so had almost dropped all babble but for his loud outburst. John and I went away for a few days (THANK YOU GRANDMA & GRANDPA FOR BABYSITTING!!) and since we have come back he has not stopped talking! Today he has been army crawling all over the place. We met with his therapists yesterday and came up with his new/updated goals for the next 6 we continue the path of two steps forward, one step back but always getting somewhere with Peter. And he is just soooo darn cute that he makes the journey FUN! Hoping for good advise! Love! catherine