Anderson's Medical Expenses
He is fighting some sort of a bug currently. I don’t like that he’s feeling sick, but I do like the extra cuddles I get as a result.
Averie is still a rockstar at school. She’s also a social butterfly and we often have to reel her in from wanting to spend every waking minute with her friends. Her friends are great with AJ too though - they’ll play with him and even scold him and plug his oxygen back on when he’s being difficult. Last weekend Averie and her friend even made me “breakfast in bed” and Averie took over watching AJ for a few minutes since he woke up shortly after delivery.
AJs insurance approved pitching in for his gait trainer, so we should be seeing that soon and he also should be getting his orthotics next week. And on top of that he is currently borrowing a little “walker” from grant wood that I think is the cutest thing ever. It’s really a mini version of what many older people have. I’m secretly hoping he’ll have one like it still in October and will be able to dress like an old man for Halloween! I’ll try to get some pictures or a video of him with it soon.
He’s been working on some different communication methods as well. His sign language vocabulary is expanding almost every day, which is amazing to watch and see. I’m debating taking an ASL class or something to try to get up and ahead of him since AJ is often teaching me signs now! Unfortunately though since not everyone knows sign language (or his modified versions of the signs) he needs to learn some other methods of communication, so we are starting to introduce pictures as well. His favorite word is “help”, and we are trying to help him learn to point or sign to explain what he needs help with. Sometimes it’s clear. Sometimes it’s not. Often if we say “help what?” he will just keep signing “please” and “help”. Which is absolutely adorable, but also frustrating for both him and us when we don’t know what he wants help with.
We are also starting to put some thought into what is next for AJ. Home services from grant wood end at 3 and he will be eligible to start to go to school. Although we really want to see AJ spend time with other kids, we have to take into consideration that he gets sick easily and even a little bug could set him back more than the few days in school would help. It will undoubtedly be a balance. But I’m hopeful we will be able to work something out.
As for his upcoming procedures? No new news at this point. We are expecting a call back from CHOP this month as a follow up, but we really haven’t made any steady progress in weaning his oxygen so don’t expect much change yet. We are doing some digging and trying to get a better understanding of what his options are and if there are other treatment paths we need to consider for his pulmonary hypertension and heart needs as well.
I think that’s it for now! Thank you to everyone for your continued prayers and support. They really do mean the world to us and make all the difference!!
His oxygen saturations are improved since before yesterdays procedure. He was sitting at 90 on just 1.5 liters when I went to sleep last night - which is usually the point where we would turn him down. I haven’t seen him hit 90 on 1.5 liters much ever - if at all.
It’s likely too soon to tell, but it does give us some hope that the 1 liter goal that CHOP has for us might actually be feasible.
Now the big challenge is to get AJ to lay flat pretty much until bed time tonight to make sure clots are able to form at the two entry sites so he doesn’t bleed out. So far he’s still sleepy enough that it’s not too challenging, but it’s already getting harder by the minute.
Thank you, thank you, thank you to everyone for all your love and prayers
Perhaps the reason he has a hard time sleeping is it is too quiet. Hospitals are not know for being quiet, even at the best of times, with all the monitors, nurses checking in, etc. Maybe turn on a radio. Even without the hospital situation it seemed to help my two go to sleep. Martin.
Hey Amber, I'm Tina, and I work for hibu as a Premise Sales Rep in Macon , Ga. I have been following AJ since you subscribed to gofundme. I just wanted you to know that prayers are constant, and I think you are an awesome mother of two adorable children. I cannot possibly imagine how hard this has been for your entire family. Praises for good days, and prayers for bad days.
Amber, I don't know you personally but I work for hibu. I'm a sales rep in North Carolina. Since the day the message went out to all of us about your situation, I sent a financial support but I have also sent prayers and cried tears with you! I think about you often and I read every single update that is posted. I will not stop praying for all of you! Love and prayers! Shondra Grant
We've posted this on our Facebook page (Irish Philadelphia) and we may have some help for them in terms of lodging. In the meantime, they can check this website someone posted. They do lodging for patients in Philadelphia. http://www.hostsforhospitals.org/website/