Tuesday, October 28, 2014

Jamesie Day

Today marks James's homecoming from the NICU two years ago, 124 days after birth. He spent just over four months at PSL, three of which were on heavy ventilatory support; had eight surgeries and only came home with minor assistance. He was discharged with an 1/8th of a liter of oxygen, no medication, and a week's worth of wound care materials to finish the healing process of 3rd degree burns sustained on his foot from an IV infiltration that occurred 6 weeks prior to discharge. 

Today James is making improvements every day in his mobility. His complications seem less due to his prematurity than from the spinal complications he has faced. The tethered cord and subdural arachnoid cyst caused pressure and weakness before we ever found the issue. It's impossible to know the impact these problems had, but James is making great progress in the aftermath. 

James is extraordinary in so many ways. He is sweet, silly, and determined like no one else. James lets no person get in the way of his goals or intentions. He is incredibly smart and intuitive. James thrives on positive energy and support. 

James loves anything and everything ball-related, but has a lot of other interests too. He could eat a whole plate of GF snickerdoodle cookies and a full batch of pancakes. He can sing a dozen songs and recite the alphabet. He knows hundreds of words and can say full sentences. James can run with his walker and/or shopping cart, and is walking very well holding onto one hand only. His legs are growing in muscle strength every day and his flexibility is increasing exponentially.

We take every single milestone as a win against the losing odds we were given all along the way. James came fighting from day one, and continues to fight. We are so thrilled to be celebrating two years home as a family. 
Year one. 
Year two. 



Wednesday, October 22, 2014

Pumpkin Patch

Over the weekend we went to our first pumpkin patch. Being in quarantine, we went to a small, low-key patch near our house. The kids crawled and climbed around and selected their pumpkins, and had a great time. We had free range of the whole patch, no company, and were happy to pay a total of $8 for our 3 pumpkins. It was a good way to spend the morning. 


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The little dragons are definitely in toddler stage. They are fiercely independent and want to do things on their own. They both can climb into their high chairs by themselves - James only needs a boost due to his short legs. 
We have been doing some artwork and  finger painting and getting pretty messy
They also really like to send videos to their cousin Marri in Washington and see pictures / videos of her. We have a mini pen pal thing going on, which works out the best because all the kids like to watch their videos over and over again. Sometimes we will FaceTime with our family and friends and the little dragons do really well with that too. 

They also are very into cuddling and "I love you" right now, which makes for some pretty amazing and heart-warming memories for us. 

Wednesday, October 15, 2014

October 15th

The little dragons are doing just fine. They are loving and adorable and wonderful. I am so thankful for every day we have together, and that they are growing and making progress every day. It is what I wished for in my pregnancy and I am truly lucky. It has not been a path without difficulty and lots of trials along the way- but we are so very fortunate. 

Today I want to take a moment and give our page to those babies that fought the good fight for pProm or prematurity. Our friends who passed on. Our friends whose stories are cut short, only to be finished another day.

Our story could have been that way and for one reason or another, it is not. So today we give our love to those families that don't have babies to hold in their arms, those families who fought just as hard as we did and still had to let go. Their grief and pain is unbearable and unimaginable.

Today we remember Jacob, Jordan, Pip, Bennett, Caitlyn, Nico, Spencer, Quinn, Elijah, Judah, Annabelle... And so many more, many that will never be forgotten and that are always in our hearts. 

1 in 4 has lost a child. Today is infant and pregnancy loss awareness day. 

Monday, October 6, 2014

The IFSP

 
We've been in Early Intervention (EI) with DDRC through Jeffco for two years now - well, officially at the end of this month as James was discharged from the NICU on October 28th, 2012. 

If you were to just look at the testing side of things, the little dragons are ahead in some areas and behind in others. Keep in mind, they don't adjust for prematurity past age two. 

If you were to compare our kids to other kids, it might bring up feelings of sadness or grief, loss or uncertainty. But for me, and most of our family I suppose; we are absolutely thrilled at every SUCCESS the kids have made and the fact that they are breaking down barriers and doing great things every day. 

The little dragons have absolutely no idea about the mountains they've climbed - or the ones that they'll have to face in the future. And I hope they continue to make progress, fight for survival, and strive for a great life every step of the way. 

So, at our annual IFSP (Individualized Fanily Service Plan) meeting today, we talked about goals and tried to figure out a strategy for EI therapy for the little dragons over the next nine months. They will officially graduate from EI services at their 3rd birthday in June, and from there we will be in a whole new world. 

James will receive PT and OT to help him catch up in his gross and fine motor skills, which he is significantly delayed in. While James has made great progress, the tests only look at skills, not progress. James has graduated speech therapy and currently has expressive language skills several months beyond his age. 
(Baby Yoga, James' new favorite thing). 

Maisie will receive followup with speech therapy and PT through the next six months to make sure she doesn't fall behind. She is slightly behind in gross motor skills and ahead in all areas of language. 

A year ago when we did the same annual IFSP, James had no teeth yet and was unable to feed himself. Only two months later he had ten teeth, was feeding himself 75% of the time, and within four months of the IFSP had begun crawling on all fours. During this time James started to experience weakness due to increasing pressure in his spine from the tethered cord and arachnoid cyst. We had no idea; had we been able to address these issues earlier perhaps it would have made a difference. 


This time last year, Maisie was still cruising and hadn't begun walking on her own yet. That would happen three months later. She preferred to eat things with a smoothie texture because she still lacked proper tongue control from her Macroglossia. Maisie spent her week in the PICU from Enterovirus, Rhinovirus, Bronchiolitis & Pneumonia. She continues to struggle with respiratory issues and we worry every second of the day about impending illness and overexertion - and what the future looks like for her lungs. 


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The tests don't look at the child, or what the child has gone through. It's a yes or no - with zero adaptation or room for commentary. This is where we love our medical providers and the group of specialists that we see- they value PROGRESS versus comparing our kids to every other person on the planet. 

These kiddos are important; they are the little dragons, who have survived the impossible and are changing the world, one day at a time.