It's been awhile since I've written about what is going on as I have been working on getting my CNA to take care of Isaac, but in general Isaac is progressing and standing still all at the same time.  To note the positive information first, Isaac received braces on his ankles to give him support as well as a walker and I can't tell you how excited he was to walk like his sisters do.  His smile was from ear to ear as he pushed himself to move with all the strength he has.  He has also began crawling up the stairs very well and he is very close to having all the confidence he needs to crawl down the stairs too.  He started saying Mom about two weeks ago, which of course makes me very happy, and recently he has started liking basketballs, footballs, soccer balls and more. Isaac's ears were good when the E.N.T. saw him again and after a hearing screening they said Isaac's hearing is also good. Isaac's eyes continue to water and gunk even after getting the stents put in for a time and then taken out but not as much as they use to so we will continue to watch them closely and we are postponing the procedure called Dacryocystorhinostomy for now.  There is fortunately still hope that Isaac will grow into his wide nose and his tear ducts will not be pinched as much as they are now, therefore avoiding the Dacryocystorhinostomy procedure all together.  Isaac has started getting use to his glasses and only takes them off to chew on them when he is bored of sitting (hence we take them off when he is eating or sitting in the car).   After going to his swallow study test, we were told Isaac can eat 3 to 7 bites of soft foods (the size of our pinky nail) and he can drink 3 to 5 ml's of liquid through a syringe very slowly per day. This was exciting as on Isaac's 2nd birthday he was able to have a little bit of a brownie and some ice cream. We saw an Immunologist and after many tests, Isaac's Immunologist said Isaac is not allergic to anything and he does not have an immune problem.  He told us that Isaac's structural issues are part of Isaac's biggest problem and cause him to get more sick and stay sick longer than most kids.  The Immunologist also told us that Isaac is safe to travel but we need to remember that he is still very young and he is still building up his immunities.
             With the information from the Immunologist I thought, "Great! We can travel, keep Isaac safe, and everything will be great!" I really did think it was safe to travel after this conversation with the Immunologist so we planned a vacation to Washington. But now for all of the bad news... no more than two weeks later Isaac got very sick with the flu, the common cold, and the Adenovirus all at the same time.  He was admitted to the hospital where he was put on 6 liters of oxygen to help him breath smoothly and he slept for three days straight as he had no energy to even sit up.  After almost a week of being in the hospital Isaac was able to come home on 1/2 a liter of oxygen day and night. We obviously canceled our trip to Washington and in the last month Isaac has been able to come down on his oxygen a little during the day, but we cannot get him off of it completely nor can we bring him down on his oxygen at night. I'm sure God stopped us from going to Washington knowing all too well how Isaac is right now and how careful we need to be with him. I was in denial as I so wanted to visit family in Washington but thankfully I have good friends and family who helped me to understand that now is not our season for traveling and we just need to keep on moving forward.  Isaac's pulmonary Doctor said he will probably do another bronchoscopy soon to check Isaac's lungs since he is having such a hard time coming off the oxygen.  Isaac did go through the sleep study before he got sick and they found that his heart rate drops during 9 pm and 12 am to as low as 41 and then between 2 am and 5 am his oxygen drops significantly as well.  He has a small case of sleep apnea when his oxygen drops early in the morning and no one knows why any of this occurs.  Isaac is either plateauing in weight or losing weight so the GI Doctor and the Pediatrician have tried increasing Isaac's G-tube feedings but his stomach is distending too much despite our constant actions to vent him. We are in the process of changing his diet to a more natural diet and hopefully this will help the distending of his stomach but in the mean time a big meeting has been arranged between all 21 of Isaac's Doctors and therapists to figure out what they all need to do and what procedures need to be done next.  Isaac's pediatrician said quote, " Nothing about Isaac is normal." So we will continue to press forward and be grateful for the areas of development Isaac is doing well in.