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I am the Momma of 8 children. Seven here on earth and 1 precious little Angel in Heaven. My children range in age from 2 months to 25 years. My 6 year old was born with a laundry list of complex medical conditions. He has Trisomy 21 (Down Syndrome), a rare brain malformation, which resulted from a mutation of the PAX-6 gene, bilateral anophthalmia, which means that he was born without any eyes, so he is totally blind. At the age of 2 1/2 months old he had to have a tracheostomy to help aid in his breathing. He is hearing impaired, with normal hearing in his left ear and has profound deafness in his right. At 3 1/2 years he had surgery to have a Mic-Key button placed in his stomach (feeding Tube), which is mainly used to give him his medications. He also has insulin dependant diabetes and wears an insulin pump, which gives him a continuous dose of insulin. Even with his many dis"abilities," including being globally developmentally delayed, he has accomplished more than anyone would have ever believed that he could. Join us in our journey living with a Dis"Abled" child....

Tuesday, November 10, 2009

Developmental Gains

I would like to take a few minutes to answer a couple of questions that I have been asked recently.  What do you attriubte to Timmy's developmental bursts that he has had? Do you think removing the trach helped?

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.

                                                                 9 1/2 Months Old
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.

                                                               May 2005
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.

                                                                 August 2006
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.

November 2007
By Timmy's 4th birthday he was able to sit unsupported for a few seconds, even if it was what I call "taco style" sitting. The first of December 2007, we moved back to our old hometown, so that we could be closer to our support team (my parents and our friends). Due to finances when we moved back home, we had to move in with my parents for a while (Dec. 2007- April 2008). Timmy's therapies didn't start back until Mid January 2008, due to having to have all of his services transferred back to the county in which we had moved, the Holidays and our trip to Chicago to visit Grandma. Luckily, we were able to get the same PT and ST that Timmy had before our move, to come back to work with him.

I asked Timmy's PT her thoughts about not using the stander, a positioning device for sitting and incooperating play therapy with his reguolar therapy throughout the day. She agreed that it was worth a try. The PT was amazed that Timmy was able to sit unsupported for only a few seconds, because he wasn't able to do this before our move.

Once we moved into our own place in May 2008, we were better able to implement a therapy regiment that we felt best suitable for Timmy. Throughout the years we have learned that Timmy learns best with routine and repetition. So we set up our daily therapy and play activities along these lines. By using this approach we had to be very attentive to Timmy's communication cues, vocalizations and facial expressions, because in a sense he is the one who was totally in charge of his daily therapy session if it was going to work. We also had to know when his vocalizations and facial expressions we just him trying to get out of doing an activity.

Every waking hour of Timmy's day is spent doing something theraputic and/or educational. Like the picture above, Timmy is playing with small toys in a bowl of cool water. We count the toys, sing songs in relation to the objects i.e. if one of the toys is a rabbit, we might sing Little Bunny FuFu or Do Your Ears Hang Low.

We incooperate many different smells, textures, taste and sounds into play during the day. We sing, count, and say the ABC's over and over during the day. We practice stacking, sorting and putting objects into and taking objects out of a container.

Instead of using a stander we use the couch, Timmy's bed, or Emily and Timmy's play table to have Timmy stand up beside, to aid in weight bearing and to have him to "have" to use the muscles necessary for this skill. In turn this helps to strengthen these muscles.

Instead of having Timmy to spend a majority of his day sitting in his KidKart or another chair that offers support and positioning, we have him to sit on the floor, prop and side sitting. This also helps strengthen muscles necessary for independant sitting and helps with balance.

We use an exercise ball to help with balance and to strengthen neck muscles by having him to lay across the ball while holding up his head.

The unsupported standing, sitting and the use of the exercise ball ALL help in strengthening muscles, gaining better muscle control and balance.

Timmy LOVES to swing. So when he is in the swing we sing songs, ABC's, count, and use the opportunity to teach Stop/Go, Close/far, back/forward,  and body parts. We will touch a body part on Timmy as he swings forward toward us and say "I touched you -----." (Fill in the bland.) Then we may ask him "Can you show me where your ----- is?" (Fill in the blank) H

Timmy ABSOLUTELY hates oral stimulation. So instead of using our fingers or a flavored stick, we let Timmy use a lollypop to stimulate himself for a while first. After a few minutes he is more willing to let us stimulate him orally.

Our experience with the Pre-K program through our local school district last year wasn't a good experience. Timmy was placed into a Special Education Class, but unfortunately he was the ONLY child who was non-ambulatory. In my observation of the other children, most of their problems seemed to be behavioral. All of the other children could walk, run, see, hear and talk. So being that the other children were your typical active 4 year olds, this made time that the teacher could spend with Timmy one-on-one very limited. Even though there was 1 Teacher's Aid in the classroom, most of the time they both were having to tend to a child who was having a behavior issue. The classroom was too small for his KidKart to be manouvered around in. And even though the Teacher supposedly had some Special Education Training, she didn't have ANY training in dealing with a student with as complex learning difficulties that Timmy has.

The three things that I attribute the most to Timmy's developmental burst are....

1. Timmy's Kindergarten teacher this year is the World's GREATEST!!! She has many, many, many years of experience teaching special needs children with varying degrees of disabilities. Mrs. Bishop is very receptive to Timmy's communication gestures, vocalizations and facial expressions. She is a teacher who believes in work BEFORE play. She uses materials, stategies and techniques that center around Timmy's interest to help keep him focused and interested in wanting to learn. And as a Special Education Teacher she realizes that she has to be in charge of each individual student and the class as a whole in order for each child to be able to learn and to reach their full potential. Being that Timmy will remain in this same teacher's class throughout his elementary years, I'm anxious to see just how far this teacher will be able to carry Timmy developmentally.

2. As for physical therapy. Timmy has had the same physical therapist for almost 5 years. I feel that Timmy having the same therapist for so many years and being able to form a trusting relationship with her has played a major part in Timmy's development. The therapist is a very Down to Earth yet serious person. She has learned ALL of Timmy's tricks of the trade for trying to get out of doing his therapy, like pretending to be asleep, crying, having a "Timmy" tantrum, you name it Mr. Timmy has tried it. While working with Timmy fingers/hands in the mouth are a DEFINATE No, No! She tries to make therapy fun by playing music, making up silly rhymes, or singing some of his favorite songs to a silly tune, like her Hip-Hop version of Row, Row, Row Your Boat.

3. To get Timmy to where he is developmentally today took ALOT of hard Work, Patience, Persistance, routine, repetitiveness and most definately even MORE Patience. We have done away with his stander, the adaptive walker, the floor sitter. We "have" or better yet "MAKE" Timmy sit up without support as much as possible. We give him every opportunity to stand up. We MAKE him HAVE to use his muscles that are needed to do these activities. By him having to use these muscles he is strengthing the muscles and gaining better control of them. We stopped using an exercise mat while doing therapy with Timmy. An exercise mat is squishy and not the same type of surface that Timmy would be preforming on If/When he learns to crawl, walk, etc. So we chose to make the therapy surface as natural for him as possible.

Also, Timmy's overall good health, except for a couple of very minor setbacks, a reaction to Baclofen in the Spring of last year and recovery time from having his tonsils and adnoids removed earlier this year, has played a BIG role in his developmental gains.

As the old saying goes "With Age Comes Maturity." Let's just hope that this statement is true as well in Timmy's overall developmental gains.

1 comment:

ANewKindOfPerfect said...

You guys are doing such a great job with Timmy. I loved looking at his older pictures!

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