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Thursday, October 27, 2011

Update October 27th

Well, its been almost 3 1/2 weeks since our return home, and seems like an eternity with the days and nights all seemingly running together. We have so many appts to care for Ajay that it does all run together. :) I can say that we still have good and bad days, and even more bad sleepless nights but the Ajay we knew in China has emerged! He laughs, plays, signs happy and sad words, has fun with his therapists, hugs his brothers and kisses his mama and fills our days with happiness...even more impressive is he is finally eating as of 2 days ago! He has had the hardest time with food, showing no interest no matter the shape, form or consitency that I can muster up. He doesn't want to eat. We have Speech involved and GI specialist as well as our Pediatrician and Cardiologist close at hand for input and strategies. Nothing had worked. So, after much frustration and termoil, and the fear of nearing a Peg Tube permanently, he just started to eat. I always keep food in front of him as he sat with us at meal time, but he wouldn't show any interest. Then, one night over the weekend he began to hold a spoon, rub food on his lips, and drank even a small amount of broth. Its was heaven to see him attempt any signs of interest in food! Since then, he has tried very small amounts of food, ie meatloaf, noodles, rice, lots of broth and lots of water and apple juice. We are going in the right direction for sure! Now, the problem is that there are the 18 doeses of medicines that he takes daily...the docs all still think and are pushing for a Peg Tube. I am against it in the fact that its another procedure, but I do understand that amount of meds he does have to take for his heart, blood pressure, stomach issues, amoung others. Given that he isn't eating much, its very difficult to put food into any foods in fear of him not eating the food. Then we would lose the dosage. I have tried and he is smart enough to know that I "doctored" the rice. The meds are bitter and stinky. He detects it in an instant! Smart little guy, so that will continue to be a challange. I asked the doctors to give us 3 weeks, to increase food on our own, and attempt to let him start taking the meds a little at a time. I still have the ng tube for feedings so if he takes some meds, then I can use the tube for the rest. Maybe, just maybe he will learn to take the meds slowly, and by then, his appetitie will increase, and the volume of food will increase, and then I can mask some meds in his food.
With one of the many cardiologist appts, we had one test that came back negative. They were not able to see the stint that the surgeon placed in the SVC. Long story short, they did another heart cath on Oct 20th and ballooned the stink due to the pressure of the vein being unequal. It was a quick response to a failed test, so it was an obvious choice to have it done. Ajay came through like a champ and started eating that weekend in small bites. Who knew...I surely didn't think it would go as well as it did...thank God it was a success and Ajay was home within 24 hours.
So, on the therapy front, he is walking all over the house with decent speed, and does try to keep up with his brothers. He is turning pages in his books again, signing like crazy, ( still no speaking yet...beside mama, up, uh-oh) and is playful. For that I am grateful!
He is still ng fed but we have lessened the feeds at night in hopes that he will want food in the day. That being said, its a tough call on stimulating his appetite vs letting him become dehydrated. We weigh him daily to make sure he isn't loosing weight, and with all doctor appt they are also keeping a close eye. So far, he has remained within .5kg from arrival to the USA to date, including surgery. He has maintained all by himself.
We have started the IEP process for entering preschool in hopes to join a school after Thanksgiving. We know that the risks are great for sickness, but we also know we can't live in a bubble. I think Ajay would enjoy being around children and learning. Everyone who meets Ajay thinks he has made tremendous progress physically in a short 3 weeks of therapy. That is a blessing.
We are waiting now for the plan for surgery #2. Mixed emotions on that....ideally we would like to wait, and get through the holidays, but the doctors are moving towards a "sooner than later" attitude. I will definielty keep you posted.


Sunday, October 2, 2011

one week home...

Ajay has been ill this first week home and continues to vomit several times a day. ( all docs say its because of his heart, lungs and compromised airway and GERD ) He came down with an upper respiratory cold within 2 days, which meant more doc visits and increased medications and respiratory distress during the night. He continues to have difficulty eating, and actually doesn't have any true interest in food. We eat as a family and he looks very much like we are wasting his time to try foods at all. But of course we encourage all meals and snacks as a way to hopefully engage him with something. His tube feedings have been increased due to the inability to eat on his own. I am hopeful that he will show signs of wanting to eat soon. I was hoping for the removal of the tube feeds, but I feel that he won't be rid of it anytime soon. With the frequent vomiting, we need to make sure he is hydrated. I learned at his pulmonary appt on Tuesday that Ajay also has an enlarged heart 2-3x normal size, which is boot shaped, and compressing on his airway. No one ever mentioned that while at the hospital.... Its amazing to see that this child can still breathe at all! With all the other breathing complications over the last 3 months, I wonder how he will continue to breathe as if nothing is wrong. He has the bronchial and tracheal malaysia, an enlarged heart compressing on his airway as well as the right lung is still collapsed. We are working with all therapies, and Ajay isn't impressed by their tactics or games. He's quite grumpy but when he is happy, he is truly happy. I think he is just tired of everyone coming and going already, even though these home therapies have just started their routine.  Ajay will continue to heal, but as always, will be slow and Ajay"s time.