That’s the rate of Kendall’s progress. Slow and steady. I do’nt know what i am hoping for or wishing for or thinking might happen – that i’ll wake up one morning and have a pudgy roly poly 4 month old who can roll over by herself? i don’t know exactly – but I just know i wanted/expected faster progress than this! I guess it’s kind of like watching a pot of water boil. you know it’s happening, but it takes SO LONG when you’re standing there watching every molecular change!
Truly – she is doing so much better. I get asked that a lot – “is she better?”
and short answer – yes.
Her acute problems of the RSV/pneumonia/blood infection are seemingly resolved. She is, for all intents and purposes, healthy again. Out of the woods. A-ok. But the problem is, there’s still so much going on.
she still is on the feeding tube – and as of today we found out it’s going to be probably closer to June before she can even ATTEMPT a PO feed (bottle) again. She will be starting her Vitastim therapy (electric stimulation to her esophagus to help her learn to properly use the muscles needed to swallow food, not inhale it into your lungs) on april 1. While we had originally hoped to get on a program of 2 weeks of intensive therapy 4-5 times per week, the only place that could get her in does a 2x weekly program – for 6 weeks. Semi-frustrating, and yet I know we are very lucky to have gotten in to this program this quickly.
she still is very hypotonic – in a word, FLOPPY. While she moves around much better than she previously was, she is still nowhere near the level of other almost 4 month olds. I am still waiting to hear when we can get her Early Intervention assessment scheduled, but hopefully that is soon so we can get her started with physical and occupational therapy.
She still has a long road ahead of her in other words.
That isn’t to say that she isn’t IMPROVING. She is! Your prayers are definitely affecting each and every day – I believe God hears us all and has His hand firmly upon her. but there’s still some unknowns out there. We will follow up with her kidney doctor in 3 months, and her neurologist at probably the same time. We will follow up with her GI doctor in a few weeks to make sure she is doing ok on all her reflux meds so we can continue to keep her food OUT of her lungs! She was having a pretty good day today until she randomly vomited most of her feeding back up and then had, well, a really gross diaper. I won’t gag you all with the details – let’s just say it wasn’t normal! (But really, She’s never had a normal so what do I know???) It made me just a little sad for her. I realize that one bad afternoon is not a sign that we’re going backwards – it was just disappointing to ME, right then and there. But then she proceeded to laugh and smile and play with Ben and i for the next two hours so maybe it was just a final push of yuckiness out of her system?
i am tired today. Tired of the insurance company phone calls, and keeping track of her meds and follow up appointments and remembering that if I want to pick her up and take her from room to room I have to unhook machines and push an IV pole with me and i can’t just lay her down real quick to do something. I think it probably doesn’t help that i may or may not be catching this horrific stomach bug that is going around, and Ben’s throat is starting that wonderful scratch that precedes really fun bad colds, and Karissa is in the early stages of another UTI. We just need a little SPRINGTIME around here already! Just a shot of warm weather would do us all wonders – and by all i mean all of humanity in the chicagoland region! tomorrow supposedly we might get it. today wasn’t too bad, really. But tomorrow is supposed to be even better? Has anyone else heard this? Amy?
But tonite is the last nite of the IV craziness. we will be one step closer to “normal” tomorrow afternoon when the nurse comes to free her from her IV. hopefully they send me a healthy nurse tomorrow, vs the one who came on tuesday and puked all over the bathroom. Yeehaw.
So if you have a prayer to spare – here’s where we are tonite:
Please pray that I can figure out the formula insurance thing tomorrow. i am trying to work with old peds because they have her most complete file and they are the ones who put her on the nutramigen. I received a letter from them, but now insurance is saying they need a real doctor to call and give a clinical differential. The thought of this is just overwhelming to me tonite, the amount of phone calling I will have to do to ensure that this happens, following up with the peds, following up with insurance, following up with home health care. Please pray that this goes smoothly.
Pray that her Early Intervention assessment gets scheduled soon and that she can start therapy soon.
Pray that i can learn to delegate responsibilities so that I can accept help better. I know I need it, and I know you all want to give it – I just feel so stuck as to what/how that all works. Can someone please just come slip me a Rufee, put me in bed, and become me for three days or so? HA! Seriously – I cannot thank you all enough for the meals, childcare help, errand running, random grocery item pickups, and thoughtful little things (the lotion and hand sanitizer and the bag of Twix bars?!?!?! Priceless!!! and that’s just naming a few things – you all have been above and beyond good to me and my family!) i really have no idea how to properly thank everyone. I know I am failing miserably. please please know that if you have given or done anything it is SO very appreciated by us.
and pray that we can all get some rest around here somehow someway. Poor Ben having to get up and function at his office everyday – I don’t know how he does it. I married an amazing man. i would never wish this set of events on anyone, but i hope you all get to see your spouse’s step up and shine the way Ben has from day one of Kendall’s life. i love you benj. thanks for being my rock the past few months.
ok i am rambling the rambleness of exhaustion.
So glad you all like the new blog look. it has a long way to go. Check back often to see the new and fun ways I have messed up the coding!
have a wonderful nite/day/whenever you happen to be reading this. Thanks for reading. Thanks for commenting and emailing. Thanks for praying.
keep on keepin’ on –
T
Terra, You might want to see if your insurance company will assign you a case manager. That way you may not have as many hoops to jump through or phone calls to make. That was something that helped us tremendously.
We love you guys and are praying. Your army is waiting in the wings. Just drop the girls at the front door and do what you need to do (shopping, doctor’s appointments, sleep, or just rocking in the corner imagining your “happy place”. It is seriously never a problem. Keep on Keepin’ on girlfriend! You have lots of support. Know you are not alone.
Hang in there with the insurance/formula thing. Keep on plugging. If they don’t cover based on the peds letter, get one from the new ped. If they don’t cover buy that one, get another from the gastro. I have been down this road with families before, and this one is not just a slam dunk for insurance co. Their main view is that they don’t pay for your food. It takes multiple professionals telling them that this is therapy to get them to budge. Meanwhile, I will continue to try to score as much free stuff as I can. Whenever you visit the ped or the gastro ask for samples. Make a special friend of the nurse in their offices. It never hurts to have a nurse battling in your corner. I know I am supposed to be impartial but I have been known to load up my “special” people with as much stuff as I can scam.
You KNOW I can relate to the asking for help thing. So…how do you do it? You just do. You take your dear friends (Like Val!) up on their offers and drop your girls off at their door.
You cringe when you do it because you feel bad “asking.” But you do it anyway. And it gets easier. And you know that some day when you have the opportunity to help someone else, you’ll jump at the chance.
Praying for you this morning.
superficial things first-i LOVE the new look.
other thoughts- do you remember that story of moses having to keep his hands up for israel to win the war, but his hands kept growing tired so aaron and hur had to step it up and hold his hands for him? well, we’re here to hold your hands up. and it’s the way it’s supposed to be, you know?
the other random thought was this line from the new u2 album, (you know me and u2, it’s like my modern day prayer book).
“it’s not a hill, it’s a mountain, as you start out the climb. listen for me, i’ll be shouting, ‘we’re going to make it all the way to the light’.”
(wait. maybe i should’ve quoted from ‘get on your boots, those sexy boots’, oh well. )
one socialist fist bump, comin’ atcha.
clc