Let me answer the second question first, only because its answer is more simple. Timmy has only had his trach out for almost 3 1/2 months (YAY!), so I don't feel that it has recently attributed to Timmy's developmental bursts. But in the scheme of things to come, I do feel that by having the trach out, it is going to help Timmy tremendously. How? Well, first off, it gives him less on his body to explore and focus on. Not that him exploring his body is a bad thing, but Timmy was at times obsessed with playing with his trach, pulling out the trach and removing his Passy-Muir (speaking valve) that we were unable to get him to focus on anything else.
Now to help you better understand "How and Why" I feel that over the past year or so Timmy has made such great developmental gains, I will have to go back quite a ways. When Timmy was born he was very critical. Timmy's initial diagnosis at birth was respiratory failure, pneumothorax (hole in his lung), sepsis, congenital anomilities (brain and eyes), insulin dependant diabetes, and kidney failure. Immediately following his birth Timmy was placed on an osculator to help him breathe, where he spent the first few weeks of his life before being switched over to a ventilator. It wasn't until Timmy was 2 1/2 months old before it was discovered that both of his nasal passages were blocked, hence the reason he couldn't be weaned off the ventilator and subsequently had to have a tracheostomy placed.
4 Months Old
Even before Timmy's birth we were told "Don't expect him to live longer than a few hours, due to all of his medical complications." After seeing him in such critical shape following his birth and being told that we only had a short time with him, when we brought him home from the NICU at 4 1/2 months of age, he was on continuous oxygen, continuous pulse oximeter and apnea monitoring. Still we felt very blessed to finally have him home with us.
At about 6 months of age Timmy started receiving PT (physical therapy) and OT (occupational therapy) once a week at home. We didn't let the therapist "push" Timmy to his fullest potential, because we felt that by over stimulating him and stressing him would lessen our time with him. So when the therapist would come for their visit, if Timmy was asleep we requested that the therapist just let him sleep. And if Timmy seemed to be having a "bad" day we would cancel therapy. Also during the months leading up to Timmy's 1st year of life, after being discharged from the hospital, Timmy had a lot of Doc appointments, so this too prevented him from having weekly therapy sessions on a regular basis.
By a year of age Timmy had some small developmental gains. He could roll over in both directions and could hold his head up very well when lying on his tummy. But even though we were seeing these small gains, we let our fear of losing Timmy stop us from pushing him. When I look back, I now realize that at the first sign of development we should have really pushed Timmy to his fullest potential. I feel by not doing so, we have somehow, even in a small way, hindered his brain from developing neurons necessary for him to be able to preform certain task. \
Timmy had the World's GREATEST Neonatologist! On Timmy's 1st. birthday we took Timmy to see the staff of the NICU, who had become emotionally attached to Timmy the 4 1/2 months that he was in the NICU. I had a looong heart felt conversation with Timmy's Neonatologist, who sternly, but lovingly pointed out, that we were doing more harm to Timmy by not pushing him to his fullest potential by restricting his therapies. He also reminded me that I had once said to him that I would do ANYTHING to prove the medical professionals wrong. That Timmy WOULD go far in life. Following the Holidays and our move in March of 2005, I requested that Timmy start having PT, OT, and ST (speech therapy) 2x a week. From April to July of 2005, Timmy received all of his therapies 2x a week. In mid July Timmy started attending Easter Seals UCP a few hours a day each week. During this time we didn't see much in the way of developmental gains. However he was starting to sit up better while in his highchair. Timmy was still wanting to sleep a lot. I'm not sure if it was due to over stimulation, stress or his nightly sleep patterns at night, or maybe I should say lack thereof.
In mid October 2005, Timmy was hospitalized for 2 weeks due to some type of infection. After being sent home with a PIC line and antibotics, we felt that maybe once the illness was behind him, we could start pushing Timmy to his fullest potential in therapy once again. Around this time we had started Timmy on Melatonin and it was helping him to be able to sleep better at night. Within 4 days fo being home, Timmy was back in the hospital with what was later diagnosed as Pseudomonus Pneumonia with possible aspiration pneumonia. Timmy spent 53 days in the PICU. When Timmy finally came home, he was on a ventilator and continuous oxygen. So here again, we had a child who was very frail. So the therapists couldn't do much of any type of therapy with Timmy except for passive range of motion.
By mid March 2006 we had Timmy weaned off of the oxygen and he no longer needed the ventilator. What little gains we and the therapists had made with Timmy before his illness, had been lost. So we had to start back from square one.
By August Timmy was able to tolerate being in his stander once again for 20-30 minutes at a time. Timmy had beaten the odds once again, by being able to recover from such a serious bout of pneumonia. Timmy was getting his therapies PT, OT, ST twice a week and we even felt that it in Timmy's best interest so we added vision therapy. We spent alot of time playing with and singing to Timmy. Slowly but surely developmental gains started to emerge. He was starting to tolerate oral stimulation, his muscle tone was improving, his balance was improving and he was a very happy boy.
In late March 2007, Timmy had yet another setback, due to a 3 week hospitalization from having Ecoli pneumonia and yet again the possibility of aspiration pneumonia. I feel that the aspiration wasn't due to the consistancy of food and liquids that he was consuming, but rather from the severe reflux, that at the time, Timmy suffered from. During this hospitalization Timmy had his G-Tube placed and a Nissen Fundoplacation procedure.
In July 2007 we moved to a different part of our state so that we could be closer to Timmy's Specialists. Timmy's new therapists had a different outlook as to what and how we should proceed with Timmy's therapies. They felt that we needed to give up the over use of the stander, positioning seating devices and to use "play therapy" throughout the day to stimulate Timmy. I was very skeptical at this approach at first, but I was willing to give it a try. I had been told for the past almost 4 years that Timmy needed special devices to help with standing, posture and play. So we continued to use the stander and his highchair for support and positioning ONLY while playing, when we needed Timmy to be able to use both of his hands for play.
Mid August 2007
Before August we had tried to work with Timmy to get him to drink from a cup, but didn't have much success. After our move in July, Timmy absolutely refused to drink from his bottle. I was adamant and was not going to relent and let the nurses syringe all of Timmy's liquids in via his Mic-key button. I knew how important it was for Timmy to keep hydrated, but yet on the other hand, Timmy is a stubborn child and one who tends to want to take the easy way out. So we kept offering him his bottle and the cup at each feeding. One day Timmy just decided that he wanted the cup. I could be wrong on my guess, but I attribute Timmy's refusal of his bottle to maturity and him not wanting his new nurses and therapists to view him as a baby.