Dana’s 2017: Trach-Vent Journey with a lot of Gratitude

       Happy New Year everyone. For families with children having disabilities, every moment that our kids are healthy and well is happiness to us. I guess all parents are like that. But having a child with complex issues, being able sustain good health and actually start activities like other kids do is more than a blessing. I can’t even describe in words how thankful we are.

       2017 has been great for Dana and for us (Niel and Me). It has been a year of discoveries for our little angel, as to what she has accomplished and what has been the help we have gotten for her.

15844450_10154904625396967_8935848000546081470_o  Dana was AT HOME to celebrate 2017 (and now 2018) New Year’s day with us. THAT was a gooood start! To top it, our families with us to celebrate as well. Many families have celebrated the holidays in hospitals. We have been there and it’s hard though we understand why we needed to be there and I am sure those families do. We pray that you may be able to go home soon.

       Dana had her 2nd Birthday at HOME. It was the first birthday she had at home. Of course, we will always be thankful for the people in the hospital who prepared for her 1st birthday but there is really no place like home.16177474_10154978261491967_2687838155375478841_o

         16114711_10154978370431967_8207854593550120824_nGood Health.  Dana has been, for the majority of it, healthy. There were times that she was sick but God has been so good to her  that she recovered well. I am thankful to her doctors and her nurses as well for helping us take care of Dana, always.

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     Dana Riding in our Own Car. Yes, this is BIG to us as we travel 99% all the time with Acadian ambulance with a Paramedic and the nurse. This year, we have finally braved ourselves to take her to our car. Dana has proven herself stable enough to recover whenever she gags each time her trach is moved. When the weather will be a bit warmer, we will plan to go to parks with her.

          Dana is taking a bath on the BIG BATH tub. We have already given bath on the big tub using her bath chair and hand-held shower. For 2 years and a half, we have either bathed her on the bed or in a baby bath tub that we place beside her crib. It took as a while to do it but I’m never a believer of rushing things.

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Dana has a BIG GIRL BED. Out with the crib and IN with a princess pink bed. God has been so good that the new bed that’s  very comfortable. It is so big that I (or Niel) can climb on it to sleep with her at times.) It took her a while to get used to us with her on the bed though lol! Thanks to our Physical Therapist Elizabeth who tells us what helps Dana best and helps us get it. Thanks to D’Anne of Numotion who made sure that Dana gets this.

Dana is eating baby food.  Yes Dana has been able to eat pureed food, not equivalent to a whole meal though since Dana still have a GJ Tube and is still on a continuous feed. She is able to drink well and finish half a cup of baby food with no difficulty at all. Thanks to our Speech Therapist Mark for training Dana well, and us too. I have made few baby food for her using fruits. I still need MORE help in preparing dana’s food.

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          Dana’s Vision Therapy. This year, we met Ms Ethel Dupree. She is Dana’s Vision Teacher. With her guidance, Dana is now tracking better. Dana has Cortical Visual Impairment (CVI) due to her brain injury.  This means that she can see objects and persons but it takes her a while to understand what she sees and how to react especially unfamiliar things. We met also this year Ms Laura Harmon, our Blind Services Coordinator who introduced us to a lot of opportunities for Dana as she grows older. All of these services is through the help of our Occupational Therapist Jessica. I would have known NOTHING about this if Jessica have not told me and actually helped me call persons for this. This is Dana’s initial step to attending school in 2018. We’re excited!

  22406337_10155816280586967_3806510627428456677_nDana’s Milestones. It’s a process, if I may say. As you all know, Dana also has Brain Injury (Hypoxic-Ischemic Encephalopathy) after an unfortunate sepsis occurrence when she was hospitalized for 11 month.

Dana’s recover to respond to many things again are slow but rewarding. She has been more expressive and stable this year. She is able to make choices in her little ways. She is able to hold her head longer and able to voluntary pull herself up whenever we place her on her tummy. The latest miracle we saw is when she giggled, threw both of her arms and kicked both legs after we changed her trach one afternoon. It was a good moment. She is still unable to say words but she is able to make sounds even without her passy-muir valve. She still needs a lot of help and we will be here to help her all the way.

       And there’s a lot more to be thankful for. Dana’s home health company, Pediatric Home Health, who makes sure that even our non-nursing needs are taken cared of. 2017 has been good to me and Niel too. God has been good. Thank you for those who keep us in their thoughts and includes is in their prayers.

       We continue to pray and include those families that have children with complex medical issues. It is journey with a LOT of challenges. It takes a lot of HOPE, LOVE and PRAYERS to be in a comfortable spot but it is possible. God is good. Cheers to 2018!

 

 

 

 

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