Posts Tagged ‘ATRT’

Nap time

I know that Moms everywhere understand the beauty of nap time for so many reasons. Kai has never been one who likes to nap or sleep (he even fought off the effects of the sedation drugs twice when we first tried getting his MRI) and rest is something his body just hasn’t been able to get much of lately and it’s what he needs to heal and allow his brain the space to reorganize and rebuild. But he’s sleeping peacefully right now and once again nap time is a beautiful thing ūüôā but now for such bigger reasons. ¬†Thank you God for helping little guy get some rest.

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Big Strides

After a pretty rough night for Kai dealing with some of the side effects of the steroids he is on that are helping him with managing the swelling and inflammation, Kai had an awesome day.Kai Out to see the Sun 03.12.14

Getting this wheelchair has given new life to Kai – I think we went on 6-7 “walks” in the hospital today. It was so windy today (up to 45 mph gusts) so we couldn’t go outside, but we’d go and see the sun in the windows and take his visitors for walks asking different people to push him in the wheelchair.¬†Kai also got to finally take a shower after about a week and several days of Neosporin hair – contrary to popular belief, Neosporin not so great as a hairstyling product. He asked to put on his firetruck tshirt (thanks Nicco!) and his own pants and even brushed his teeth. I know this may sound cliche but holy moly, am I ever re-learning the lesson of how beautiful and life-changing he small things can be.

Kai first silly face 03.12.14

Kai made great strides with the occupational therapist too – he sat up on his own using his elbow and arms to help him up so he could do a puzzle and I think this gave him new confidence and he would try again and again if we could find good motivation such as when we just couldn’t figure out which car was Lightning McQueen or Mater or if Thomas the Train was red or blue.

Kai and his puzzle 03.12.14

We are so thankful for so many moments today and Kai had a peaceful nap today and right now he’s only moaned a little bit while trying to sleep which is amazing. Thank you God for a wonderful day with Kai monkey. I want to remember the way it felt to give him that hug when he sat up without pain and how he gave us high fives and made a “funny” face for Sheerin when she wanted to take his picture. I know that things are going to get a great deal more tangible (read: makes my stomach turn upside down)¬†on learning what Kai will have to go through,¬†but I¬†want to try to¬†see the life and love in these days – I know I’m going to struggle with this, I don’t want him to suffer anymore than he already has, but this is part of¬†his story. And¬†Kai’s story is one of life.

It has to be. Yay for Toothbrushes 03.12.14

He’s a little stinker and feisty and kind and thoughtful.¬†And Lord please help Shawn and I and all those who care about him,¬†walk with Kai in this so that he only feels lifted up, loved and comforted. Let Kai know that Love wins and that he can have that peace in his heart.

Thank you again so so much for all of your prayers and support today – you helped Kai make great great strides!

We’re mobile

Kai buddy had a somewhat restful night, even if it didn’t really start until midnight. The steroids he is on mess with his appetite and generally make him uncomfortable.¬†Being in the neuro ward rather than the ICU is a big change. Nurses are only in every 4 hours rather than every 1-2 and it is substantially quieter.

This morning Kai has a lot more strength! He’s rolling around a bit on his own and is up to sitting more upright rather than laying down. The big deal for me was seeing him walk kai and his chair 3.12.14across the room to a wheelchair (which was baited with Starbucks pumpkin bread) with his PT! She pushed him around for a few minutes so that he could get the feeling of hallway air blowing through his hair. Aki missed it, but he’s already asked to go on a walk so we will hopefully make it to some sunshine today.

 

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Movin’ on Up

…To the 4th floor that is. Good news! Kai moved out of the ICU this afternoon. Thank you for all of your prayers this morning for his pain, Kai had a better day and we had a number of great victories including the first smile we’ve seen in a long time.

He met with the different therapists today (speech, physical, and occupational) and the physical therapists helped him stand with our help and holding him up. It was brief but awesome to see.

It seems that resting is hard for him – I’m not sure if it’s pain or side effects of the medicines he’s on (I’ll ask this tomorrow) or a combination of so many things including the fact that it’s just hard to get good rest in the hospital. But, I think what’s hard, and I’m anticipating there is going to be so much more of this, is just feeling so¬†helpless when he’s just moaning and not being able to do anything. He cries out “Mommy” or “Daddy”¬†but¬†at time like these¬†we just¬†can’t bring him¬†comfort and of course as a parent that’s all you want to do, you want to¬†“make it better”. ¬†Nighttime seems to be the worst time for him (he’s been struggling to fall asleep for a¬†long time¬†now) but tonight his moaning sounds less of pain and more of just restlessness and agitation which is a good step!

The picture below is of when Kai’s friend Kailani came to visit today. Kai had a great visit and shared “apple squeezies” with her and the played a game of puzzles on the iPad together. And if you look close at this picture, Kai asked to hold Kailani’s hand and she helped him as the nurse was checking on his PICC line. Sweet, sweet moment. ūüôā

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Thank you again so very much for your support and prayers today! We are fumbling through this whole thing and trying to learn as we go and also try to just be Kai’s Mommy and Daddy which is taking on new meanings and challenges each day and so we thank God that He’s being our rock and that you all are helping us back up to cling to Him¬†when we feel like we’re slipping or that we might let go. Thank you again.

 

 

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