My Princess Danielle

The latest toy for Danielle is the ‘CoughAssist’ to manage her respiratory airway daily. "Cough Assist" will help Danielle to trigger coughs to get her secretions out of the airway. With “Cough Assist” machine at home, we can do ‘coughing’ for her and it helps to maintain a clear airway, in return improve her quality of life. We came to knew of this machine 4 years old, but wasn't available in Singapore. Even if it available, the amount of the machine is abt $20k. By then, even we wanted it then isn't any doctor would want to gave a try on her. It was as if saying even you have the money you can't buy it. Last year, when we heard there vendor brought in this machine. We jump straight in to search and arrange to let the Doctor allow my child to use this machine. Last January, when Danielle was down with respiratory issue again. We take this chance to ask the Doctor and Physiotherapist perform the cough assist on her. After we try on the cough assist machin...

In the last few weeks, Danielle had been waking up in the middle of the night and just couldn't get her back to sleep till morning. We are clueless of what to do and when we brought it up to Danielle's Physiotherapist. She narrow down to her hip which made more sense. We knew all along that due to her degenerative disorder which effected her muscle. Her hip had little muscle to support her leg and this will cause pain and sour when she lay at her side. All we can do now is to relieve her discomfort. We try out a special mattress that had the purpose of pressure relief and place more bolster at her hip area. We also try hanging her leg which relief the leg pressure on the hip. We will monitor and hope this method with ease her discomfort and in return we can have more sleep.

After a waiting of 2 week, we received Danielle's new ankle foot orthotic (AFO), of all her AFO this one is the most colorful we have made for her. But it do come with a price, it cost 3 time the price of what we used to made for her. AFOs used to support wasted limbs, or to position a limb with contracted muscles into a more normal position.

This is Danielle second time drip herself into the water tub experience the weightless feeling. The last time we did this was when she was 6month old together with her elder sister. That time she was not so soft yet, that didn't require her to carry the diving gear into the tub. Seeing her floated up experience the weightlessness, really gave us great joy that all the effort are worth it. The best thing abt this tub is it is affordable ($190+$20 delivery), portable (with our tiny bathroom, we can make it stand to save space when not in use. http://www.portable-bathtub.com Thanks God for this tub :)

Due to her soft nature we have not been able to position her as the picture shown. Most of the time she is in the laying down position even though she has a serious reflux issue. Evensince, last year October after she did her trach. She has more reserve and getting stronger day by day. Thank You GOD for the healing and strengthen. Not forgetting all the Uncles and Aunties for praying for me.

It been coming to a month after Danielle discharge from the hospital. Within 3 week, she actually put on addition of 1kg weight. Which made us quite concern as her weight gain just too fast. Beside this I constructed a new Gym for Danielle to work on her exerising.

After a good rest, Danielle is back to her own self exercising. I was worry that Danielle limb movement back track due to her hospital stay. Here the clip after coming back home last evening. Yesterday morning, there another vomiting episode that almost lengthen her stay again. Thanks God ,the vomiting episode did not lead to any serious issue but it did tired out Danielle and she spent the rest of the morning sleeping. Thanks for covering her in Prayer.

Two weeks ago,sat we had a session with Danielle's physio therapist. We look forward for this session as if it is like going for a progress assessment for Danielle. Not forgetting there homework to be carry out on Danielle after the session- For this session, we were told that Danielle had grow 'taller'. Also 3 month ago we made for Danielle a Foot brace (AFO), it now outgrown and we have to go back to hospital to remake another for danielle. Another comment was that Danielle had grown stronger in her hand and leg movement. Great job keep it up Daddy, Mommy and Vicky! Below a clip of Danielle swinging her left arm-

With the guidance from Danielle's physio therapist, by adding additional support along her arm. This give her arm more room for movement.

It give me great joy to see Danielle happily shaking her feet, as the video show it clapping her feet.

Almost everyday without fail, I'll do mouth therapy for Danielle. Just to share some her funny facial expression. Due to less usage of her mouth for oral feeding, the muscle around her face get tense up. Before hand it take us quite awhile to loosen up the muscle around her face.

Danielle's knee contractual is getting serious (unable to straighten her knee), even though she put on the knee brace daily. Taught by her physiotherapist, she is elevated at an angle as shown in the picture. It relieve the strain at her hip allowing her to able to tolerate longer on the knee brace. Danielle put on 3 time a day of 1 hour each. It a session that not very comfortable, just imagine try to straighten a knee or foot that is already bent.

The back rest that Danielle is resting on look very similar to a beach chair. We recently got this back rest. As compare to other chair we had previously. This one able to setup easily but most of all- it give Danielle another better view of the world around her.

I was amazed that Danielle able to hold the medication bottle ( musical instrument) and shaking it steady.

Danielle enjoys doing this exercise as it give her the freedom of flexing her arm.

This posture allow Danielle to exercise her hip and thigh muscle. You need watch closer as she move her butt very slowly.

Will the changes to Bipap machine for Danielle. We notice her getting stronger each day. So we able to try new position to strengthen her limbs. As Danielle spend most of the time lying down, this position give her back a break. Which is mean quite comfortable for her. But we are going slow as each session last only 15 mins.

Every since we had the session with the PT L. Danielle have a lot of homework to do. As you see in the picture , Danielle is carry out the strengthening of her hands and legs muscle. There also the stretching for all her limb to prevent contraction. We have seen alot of improvement in her hand and leg movement ever since the starting of the exercise routine.

After the PT session with L, we've been letting Danielle situp and exercise her motor skill. For each situp session, we can only allow her to sit up for 10 mins. Anything more than that, Danielle will not be able to tolerate as there are alot of secretions. As a result, her oxygen saturations drop below 92%. This happen a few times, and we are afraid to let her situp, knowing that after each situp session it will be follow by suction to remove the secretion. Suctioning really cause alot of discomfort to her.

Through a recommendation from a mother, we visited L, a private practise Physio Therapist. Though it is Danielle's first session with L, Danielle was very comfortable through out the session. For the first time, she able to sit up for a short while. It is a great improvement and Danielle was very happy that she was able to see the surrounding not at the usual lying position. With guidance from L, we were more confident to handle Danielle and help her improve her quality of life. Thanks L! You are our life-saver.