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)...at 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 agreed....now 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 months....so 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