Ian has been home for a few days now, and it has been very sweet and very challenging.
As Ginger basically put it…in the hospital, once he was a couple weeks out of transplant, he appeared better than all the other kids undergoing BMT…but once he came home, with no nurses, no doctors, and faced with wild brothers and a semi-normal schedule, the fact that he is still a very sick baby became very obvious!
He is not eating well, and his first doctor’s appt since he came home is tomorrow, where they’ll check on his weight and other areas of his health since he was discharged…so it would be great if he didn’t lose weight…for many reasons.
One of the other challenges is the world of difference between him and his brothers right now. He has always been a little more low-key than them in general, but now he’s also weak and sick, and has spent the last 6 weeks hooked to IVs in a single hospital room while his twin brother got to play and run and develop!
It’s not as bad as it was when Ian came home from Phoenix earlier this year, but it makes the day difficult with all 3 little boys in the house, and one of them is immune-compromised, delayed behind his twin, and can’t even go outside! You could keep a second-to-second eye on them and even then Ian will be bumped around at least a little bit…and it doesn’t take much to upset him. He would rather just play with a nice, calm grown-up or watch Baby Einstein!
As a result Caid has been uncharacteristically grumpy and contrary the past couple of days…even with some summer activities and two people here. He gets cramped and bored…and it makes for long days and exhausting evenings.
There are many sweet things, of course, such as (when he is not grumpy or over tired) seeing how much Caid cares for Ian. He hugs and kisses him and likes to help give him his medicine at night…which is great because Ian isn’t taking his medicine well and seems to take it better from his big brother than from mom!
So, i suppose just prayers and encouragements for these 3 things:
1. That Ian would eat more and swallow his medicine so he will get better and not have to go back to the hospital.
2. That Caid could be more helpful to his mom and that somehow the dynamic with the brothers could improve.
3. Perseverance and grace for Joey and Ginger, and wisdom for those of us helping them.
Also, i would like to mention that tomorrow is Gwennie’s 4th birthday. I am grateful she is in alive God’s perfect care, and that i have a perspective and appreciation of the precious life and children that i otherwise might not have. But here we are in this imperfect world, wrestling with grief and the ache of missing her life and her brightness. i still wake up and it doesn’t seem real. And as much as i still grieve, i think how much more her mom and dad still feel the indescribable loss. So however you feel led to think and pray for these things…i know that no effort is without impact.
Anyway, there i went, on and on!
Thank you all so so much ~~cnp