mandymorena

It seems each time the weather changes, which is like every week, Axel gets a cough and congestion. I worried so much he might get worse and we would have to go back to the hospital and stay a few days. But luckily with a few puffs of his inhaler he breathes a bit easier. But I know this is going to be our routine till spring comes around. Then the heat which Axel does not tolerate well.
Axel has ot and pt. He does well in both. Just that in PT he shows no interest in crawling on the floor. He'll belly crawl on the bed but the floor is out of the question. Weird. So now in pt we practice standing which he loves. I pray he can walk normally and not need afo's or anything like that. Why the PT mentioned he might need them is beyond me. He's still little, he has plenty of time to learn to walk. I have always had a feeling he would probably just skip crawling and go straight to walking.
We had a surgery follow up appt on hi birthday. The surgeon wished Axel a happy birthday and proceed to show me an xrays of Axel's chest from a year ago. I almost lost time. But i took a deep breathe and fought back my tears. The xray was blurry and his body was so little. You could clearly see his intestines all in his chest and where he had no diaphram at all on the right side. The he showed me the xray that we had just taken a hour before our appt. What a wonderful difference. Yes his heart is on the wrong side, his lung might be very little, but it was so clear. No haziness in his lung or chest his patch was keeping everything in place. He also gave us the great news that we didn't have to go back for 6 months. we've been going every 2 since he left to nicu. The news was bittersweet: I'm glad was can take a break from having to go so often but at the same time not having those xrays every 2 months to see how is insides are doing is going to worry me a lot.
A year a go today I can remember clear as day Axel had 2 trial offs on ecmo and did amazing. I remember the 30+ people crammed into Axel's little room all watching the monitor and his little body to see how he did. He passed with flying colors. and was taken off by midday.
Praying for all those whose little one's are on ECMO or coming off. Yes it is hard but GOD only gives you what you can handle.

Also I know i write a lot here and on facebook about Axel. I feel bad sometimes that i don't write as much about Jando(pronounced HONDO) My 4yr old. He's an amazingly smart handsome big brown eyed boy with the most long thick gorgeous eyelashes. Always asking questioned quick to jump and protective his baby brother, and very observent. He has learned or taught himself his ABC's, numbers, shapes, colors, body parts, etcs, etcs. All before he was 4. I am amazed at all that he knows and how fast he learns. His birthday is considered late so he can't go to pre-k till next year. But i know he's ready. He says some of the cutest things you can't help but laugh and smile. EX. "Mom I'm sick *cough, cough* I need soup to make it all go away." "Momma the moon is asleep the sun is awake."(i hear this every morning.) " I'm busy Momma, you get it." (when i Need help.) He understand that Axel is fed thru his mickey button and doesn't let anyone try to give him anything by mouth. When i said i was going to give Axel a cheeto Jando said "No momma Axel can't eat that, He get sick. If i shed a tear he comes up to me wipes it away gives me a hug and a kiss and "it's ok momma. It's all my fault." I'm very sensitive, I cry for anything some times. He was my first born and his my loyal sidekick. I love you Alfredo Alexander "JANDO" you are my first true love. Never though i could love someone so much until you came into my life.
Axael Lyxander I never thought i could love 2 people so much. OR how I could get have enough love for both but I do. AN enormous amount of love for you both.
Mommy loves you my boys