Sunday, November 20, 2011

Max vs The Helmet and other daily dilemmas

It's been a while since I've written which is partly just because we've had relatively little drama so I haven't needed to write about any dramatic hospital visits or anything which is nice! It's more to do with the fact that being a working mom is pretty much the hardest thing ever right now and I spend all my time teaching, playing with gorgeous babies and sleeping and in my rare moments when the babies are asleep and I'm home, I can't seem to justify sitting and writing a blog post when I'm surrounded by 175 cell posters that need grading. Of course I don't spend my time actually grading them so much as procrastinating and feeling guilty about not grading them. Since I graded 10 posters this morning, I'm rewarding myself by writing a blog post!

It's Thanksgiving week and I couldn't be more excited. 14 weeks ago I started back for the school year. Max came home 3 days later and Addie 7 days later. They've both been home 13 weeks today and I haven't had a week home with them. I've had weekends and Labor Day and otherwise right when they came home is when I headed back to teaching. So I am thrilled to spend my first week home with my babies. I've been looking forward to this for such a long time! We've actually packed up and moved to my parents for the week (which is pretty much like moving to the Plaza for a week so we're loving it!) so it means the babies get to spend more time with their grandparents and uncle this week as well so we're all really happy about that. (the fact that I had to bring the 175 cell posters with me is the only damper on my very joyous week...)

Right now we're in a place where we seem to be doing pretty well with the life or death stuff and we're actually spending our time and effort more on the big picture long term stuff. Which is actually a really good sign and a great place for us to be. I'll be honest, though, it's no less overwhelming or stressful. It's way less intense! But tackling Max and Addison's developmental issues, hearing and working towards transplant can be really daunting. Crises tend to pass more quickly but these are the issues with longevity. So it's awesome that we're able to deal with these things because we spent months whereby ALL our energy was spent on staying alive. But, it feels like standing at the bottom of a mountain and very slowly working our way up some days.

So one of these things we're dealing with now is Max's helmet. So Max was very sick his first two months of life and on some pretty heavy duty breathing support meaning he spent a lot of time in bed. We're thrilled that he loves being cuddled now because his first 2-3 months of life he didn't like to be touched- he was so sensitive and so uncomfortable. Anyway, he tended to lie on one side during this time and as a result, he now has an asymmetrical head. He still, in fact, prefers that one side and still sleeps on it so it's pretty noticeable. The doctor measured it and his head is like 14% asymmetrical and insurance companies consider 11% asymmetry to be significant enough to pay for the helmet so he has a reasonable significant lopsided head! Addie's head is not asymmetrical because she has generally been healthier and she has been fortunate enough to avoid Max's breathing and motor issues which has meant a lot less time in the bed. Now in theory we should have gotten a helmet for Max when he was around 5 months adjusted (7 months old) but that was smack dab in the middle of getting ready to come home. And then we came home and insurance sucks and it took a long time for us to get the helmet. Eventually my mom just called and was like 'look I'll pay you whatever it costs- just give us the helmet!' My mom has an amazing way of making things happen and 2 days later the helmet was ready, and insurance covered it at 100%.

So we're like hooray we have the helmet, ready to get Max's head all round! Well, Max is not nearly as excited about his helmet! I wouldn't say Max hates his helmet but well, if you had to wear a styrofoam helmet all day, you probably wouldn't appreciate it either! It makes him incredibly hot so he's sweaty and that makes him mad and it's no fun. And as Al has pointed out, if it was Addie, we'd probably be more like sorry, you're just going to have to tough it out for your long term gain and leave the helmet on. But Max has his secret weapon- turning blue. So he gets mad over something or another and gets all bothered and hot and then he starts screaming, his airway shuts and he stops breathing. So of course we do what I think any parent would do- we take the helmet off!!! And then we let him cool down and try again later. He wears it for a while and then he gets mad and the cycle starts over. So in the battle of Max versus his helmet, Max always wins! Because cute round head is just not as important as breathing, at the end of the day.

We're still working on our hearing aids- we keep needing to go to new doctors and get new consultations (because again, insurance really sucks) and it's a bit maddening. I told my mom yesterday that it's amazing but I think Addie will get a kidney before she gets a hearing aid. Which considering one is a small electronic device and the other is being cut out of my own body, it really pretty shocking! Addie has started talking though so we are THRILLED about that. Less thrilling is the fact that she sits and says dada dada all the time and despite my many attempts to emphasize the 'm' sound, it seems apparent that her first word is destined to be dada. Which is probably fair given everything Al does for them. Still. But she's making lots different sounds like d, b, f and m so we're pretty excited that her speech is starting to develop even before we get the aids. Max still coos a lot but has not yet progressed beyond vowel sounds but Addie tends to do things first so he may be about to start.

The other big deal thing that life in between crises is filled with is working on motor skills and addressing 'developmental delays'. It's a term I struggle a bit with because for all they've been through, I don't even like to compare Max and Addie to a 'typical' child in terms of development. But they do have some inevitable delays. And Max and Addie are in totally different situations here. Max has significant troubling delays that we're really trying to understand and work on. Progress is slow with Max but we are working with him. He cannot hold his head up and let me tell you a 23 lb baby without head control is HARD WORK! So we're all really emphasizing tummy time and trying to help him build up those muscles. He reaches at things but can't really grab and manipulate things which for a baby who is teething is really hard. Addie is constantly grabbing everything and putting it in her mouth, rubbing her gums with it, etc. Max just doesn't have the coping skills a 10 month old normally does and it really breaks your heart for him. He's adorable and sweet though so he can usually convince someone to hold him and rub his gums for him so he definitely works his charms! He's getting physical therapy twice a week at home and in December will start going to a clinic another 2 times a week for additional therapy. Right now we don't really know why he's so much more delayed than his sister (we are getting more neurological tests run in Dec also) but we're just trying to get him all the help we can.

Meanwhile Addie is also getting physical therapy once a week because although she's impressively only delayed about a month or so from her 'adjusted' age (which given what that little girl has been through is truly amazing!), she's getting help with crawling and standing. Her progress since being home is fast and very rewarding. She's mastered sitting, rolling all over the room, rolling away from her machine, rolling over to and pulling herself onto and attacking her brother, and grasping every small choking hazard possible. She's all over the place and in everything. She can stand for short periods holding on to things and now props herself up on one knee (which actually kinda looks like she's posing for a centerfold and is hilarious). Her physical therapist is worried she could walk without crawling because her standing skills are better than her crawling skills and because she's so efficient with her rolling and gets all over the room rolling super fast that she doesn't have a strong need to crawl. This is apparently very concerning and we are supposed to really want her to crawl. I do. But then again, we've got bigger issues. If she walks on her tip toes later in life because she doesn't crawl, somehow I think I'll be ok with that.

Oh and Addie also has a lazy eye. No idea why- seemingly related to kidney stuff and just one of those things that can happen. So she'll be getting a patch soon. Which is only fair if Max has to wear a helmet! She's young so it should correct itself pretty quickly. Oh and Max's physical therapist wants him to wear these restrictive bike short like things to help with his hips or something soon too. Which lol, I think Max is going to hate baby Spanx and I totally don't see that working but ok.

So I think that's kinda where we are at right now. We're enjoying some time in between surgeries and drama (because as I've mentioned, transplant will be THE BIGGEST DEAL OF ALL TIME... we've been warned a lot...) to work on some of these other issues. We're making sure we give 100% and do everything we can to ensure round heads, straight eyes, normal hips, crawling, head control and speech! Phew, I just wore myself out writing about it all. It almost makes grading the 175 posters lurking in the background seem like a bit of light relaxation by comparison.

Of course it goes without saying but I'll say it anyway- they are worth every single bit of it and more. They are just positively the most adorable, happy amazing little people. There's a lot to take on but the smiles they give us and seeing how well they are doing and seeing how far they have come make it the most rewarding thing in the world.

And to prove this is true, some pictures of my little high maintenance treasures:

Don't be fooled by the smile- this thing is my enemy!

Giving mommy big cuddles and smiles to make up for saying 'dada' first

My Boppy pillow is my BFF

My mommy is obsessed with taking pictures of my teeth!

Thank God for Nana or we wouldn't be able to truly celebrate holidays in style! (and if you think this is cute, stay tuned for their Christmas wardrobe!)

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