We made it past the holidays with out a hospital stay! Woo Hoo!!
We had a great Christmas and birthday party for Mr. Sol! He is a big ONE year old now and I am so so so happy to see him turn one! Hopefully many birthdays yet to come, but that first one is a tough one to get to for our kiddos with this condition.
It has been awhile and so much has gone on I'm not even sure where to begin or where to go.
Sol had his first pulmonary appointment of the year where everything checked out fine. He had some granuloma tissue around his trach site that has been causing some issues, but a little silver nitrate and it has cleared up, although another one is sneaking around so we may need to take care of that as well soon. His legs are getting some good stretches with his splints and there is no talk of casting at the moment for that. He is on full foods now and gained 2lbs since December 1st, so that is going well although he is struggling with the new thicker diet and moving his bowels. We don't need to go back to madison until march! Unless we have any unplanned trips, but it is nice to have a little break from going every month. Though, the last few days Sol has continued to get sicker and sicker with this runny nose, if he gets that junk in his lungs we may be headed to madison for an over night stay. Hoping he will be on the upswing though instead of going down hill, by the looks of it this afternoon it looks like it is going to get worse before it gets better still. :(
Before he got sick, Sol had been spending some time on his scooter boards. He is starting to figure out he can move himself on the boards and it is so awesome and exciting! Some more practice and he may be able to get the crawling concept down while using support from the scooters. It is amazing. I never thought we would be so close to seeing him move around when he still cant hold his head up or sit up supported. Yet he is really getting the idea down to move when he is on his tummy, I just love it. I can't wait for him to start feeling better so we can get back at it. Also his switches, that will help with play and communications, should be coming in soon here and we can get started with that. He is understanding more and more. Often I worry how he isnt developing like a normal child would be, but then he does these things that make me see he is understanding words and comprehending phrases. I have been trying to teach him that 'night night' means we close our eyes and go to sleep. Every time I say, night night, now he smiles big at me and scrunches his eyes! He can't give in and fully close them, but he certainly scrunches them. It is the cutest thing. Those things are something I miss so much that we had with may. Teaching everything and watching her become a little person. When you lose movement, you see how hard it can be to learn the simple things, but if we keep up with it, you watch as they learn it a whole new way you wouldn't expect. I hope that we will still get to teach Sol all those things we were able to teach may, crawl, walk, talk, be sassy, in time we will get there. I question sometimes, though, if we will ever reach certain things or if everything we teach him will be different and in a different way. It is still unknown, but I have high hopes for this year and to see where he will go.
May has certainly become an official little person of her own. Learning to read now, being better at math than me already! Wow they learn so fast these days. Sometimes I forget she is still only 5 and she needs to do what 5 year olds do and be a kid and not rush her into adulthood. As we all know, being an adult isn't all it is cracked up to be; at least I know it isn't!
So most days I need to remember let the 5 year olds be 5 year olds, even if they do think they know everything already!
In March Lua will have turned 3 years old. As I watch Sol, I can only image she could have been doing everything he is doing, and more if she had the support. Some days the pain still hits uncontrollably that we have lost her. It is the dumbest thing to be able to say, I lost my daughter. My baby died. Those are stupid, painful words that I wouldn't be able to comprehend if I wouldn't have lived through it. Many days I can feel this sensation of depression surrounding me and some days im surprised I have made it through the last two years with out her and I am able to function as a somewhat typical human being. Most other days I put her way back in my mind because I simply cannot go there anymore, but she always appears, in a picture or in the sky (the moon which May is always excited to point out where 'lua' is at night) or she sneaks up in songs that remind me of her. But it is funny how grief can take unplanned turns like this. I went from looking at her pictures all the time to trying to avoid everything that reminded me of her. I'm sure in a few months things will change again, or at least I hope, but you just never know.
I'm trying to design a little more, or find other things to keep me busy. Like May and Sol don't keep me busy enough, always looking for more. I know that is my way to try to fill the void in our lives, but you do what you have to do I suppose.
Well that is all for now.
No comments:
Post a Comment