Sep 17, 2015

{an update on the coleman clan, which is mostly isaac}


we are expecting the arrival of little levi coleman any day now, so i thought i would give one more 'just isaac' update before we become a legit family of four.

we've had an exceptionally full past six months with isaac and have added a few new steps to our daily routine, so i'll update as well as i can. every post anymore is titled 'another update'! my brain begins to lack creativity by the time i finish typing up everything. i always think i want to come up with a fun, witty little title, but who has time for that?!

we made another trip to cincinnati at the end of may, as i had mentioned in my last post, and traded isaacs ng feeding tube out for a more permanent g tube. that was a little more of a learning curve than i had expected - learning how to clean it and take care of it and how to check the balloon (if you don't have to know, don't even worry about it :p) and to change out the tube. its been four months now and we've just established what i think is the best nightly routine that takes the least amount of time. up until a few weeks ago we would wait until he fell asleep to get his feeding tube running, and if he was having an off night i could be waiting up at 1 in the morning for him to fall back asleep or fishing around under his covers for his tube extension trying not to wake him up, so what we have going now is SO much easier, i can't believe it took us this long to decide that the best idea would be to just get everything going at bedtime and let him be apart of the process.

the original thought was that i really didn't want him knowing that he would be fed even if he didn't eat during the day. i worried that he would start to rely on the g tube and start thinking eating was a hassle, but so far that hasn't been the case and i think he actually likes helping with that part of bedtime now. so g tube for the win! we were so reluctant to put it in all these years, but it is such a huge load off of my plate to not have to stress over how little he is eating every hour of the day!

along with the g tube, we also did the surgery that is hopefully helping with his kidney reflux - i say hopefully because we actually need to have a VCUG (x-ray study that checks the reflux) done to see if it was actually a successful surgery. we had a wonderful surgeon, but isaacs reflux was pretty intense, so we knew going into it that it might not work. we should know that in the next few months though - whenever we actually decide to get the study scheduled. we just like to pack in as many proceedures as possible if you haven't noticed, so we don't have any more days at the doctor than we have to. but that will happen relatively soon...

he also had a growth hormone study (finally!!! and successfully!!) done on that trip. we tried doing this same study about a year and a half ago, and ironically, after a few hours, were told that isaac was too small and they weren't able to get enough blood for it. i just have to laugh at that one. but this time it worked just BARELY. his vein blew at the very tail end of the 6 hour study and we had a mess of blood everywhere (sorry) but they were able to get JUST enough to confirm that isaac's body doesn't make enough growth hormone (no one was surprised, but we had to know for sure). by mid june we were able to start growth hormones with him. its a shot that we give him in his leg every night. it takes both daniel and i to give it - one person to hold isaacs leg still and one person to give the shot. every night we tell isaac it will make him big and strong. he is becoming braver about it all the time. the trickiest part is that you have to hold it in his leg for 5 seconds, so especially at first, that seemed almost impossible. we all had frayed bedtime nerves for awhile, and i have always been squeamish around needles, so its taken me up until about the past two weeks to get the nerve to be quick about it and not overthink things. we've had a few nights where i've had to ask friends to help me when daniel's been gone - and vice versa. i'm sorry friends! because, fun fact, your body (or a kids body) makes growth hormone when you sleep, so you want to follow that same natural rhythm with this. so it really has to, or should be, a bedtime thing. so there is a little glimpse at our crazy nights. between that and the g tube. we've been working on going on more daytime and brunch sort of dates as you can probably imagine ;)

a great piece of news is that in a few of my last updates, isaacs blood counts were dropping quite quickly and we thought he would need a bone marrow transplant this summer - we were bracing ourselves for july and had started looking for bone marrow donor matches. but as we continued to get blood draws, his platelets jumped back up - they've been up and down since, still in a downward trend, but for now we are in a safe zone. his hemoglobin (red blood /// carries oxygen thru your body) however started dropping pretty significantly once his platelets increased and at the end of june we had to take isaac in for a transfusion that boosted his hemoglobin.

the difference in isaac to daniel and i was actually pretty incredible. his skin had started looking a tinge yellow and jaundice before that point and immediately afterwards his cheeks flushed and his skin turned warm and rosy and his energy levels popped back up and made his moods more consistent - i think he had just been crashing energy-wise before that and would just become incredibly irritable when his body was tired (just like a toddler anyways, right?) so it was really great to see how much it helped him! the bummer is that you really don't want to have to transfuse a kid that needs a bone marrow transplant a lot. theres not a specific number of times that would be considered okay, but the more you do, the more likely that the donated blood will interfere with a transplant. basically less is more, but obviously, he needed it and we aren't going to deny him blood! (kind of funny, because come transfusion day the blood bank actually did...long story, but it eventually all worked out!)

that transfusion lasted about two and a half months and he just needed another this past week - it ends up being an all day affair so i'm glad we were able to get it done before levi got here and it was also just in time for him to start preschool with an extra energy boost.

the very last big thing is that with a little brother on the way and his hemoglobin dropping - we decided to put isaac on androgens. its a route that we didn't think we would have taken two years ago, or really even six months ago, but with a baby on the way, plus isaac still being so small (even though he has gained 2 pounds and has grown an inch and a half since june between his g tube and growth hormones. crazy progress for us!) and also just as daniel and i think about the transplant process with him where he is developmentally and being able to communicate feelings and hurts and understanding what would be happening to him, we're just not ready to let him go into bone marrow failure without a fight right now. there are pros and cons to everything, but a lot of studies with androgens and fanconi anemia have been really positive and we were able to get a lot more info over the summer at camp that made us decide it was an option we wanted to pursue. they only have about a 50/50 shot at working, but if it does, it should boost his hemoglobin, which would mean hopefully no transfusions for awhile, or much fewer and farther between, and it could potentially help stabilize his kidneys and just keep him overall a bit healthier for an undetermined amount of time. it takes about 3 months before we will know if they are even going to work for him, which would put us at about mid december. if they do work, it could buy us six months of some stability, or a year, or 3 years. everyones body responds so differently theres just really no way of knowing. but we are used to living in limbo at this point, so we'll take it month by month and see what happens!

even as things have become a lot more complicated for isaac medically, i feel like we're in a really sweet place with him. he is as feisty and stubborn as ever and sometimes hurts my feelings and makes me cry (truth) but he is also walking and talking and exploding with moments of sweetness and hugs and kisses that make up for it all. as he gets older, we've realized that isaacs disease is becoming, to daniel and i, less about what it does to us, although lets be real, it adds a whole lot of crazy, and more about how we just hate this for him. he's understanding more and as everything in you as a parent wants to protect your kid, there are just so many things we can't protect him from. so we keep trying to make all of the in betweens special and filled with a little extra fun when we have the energy. i'm so thankful god has given us nearly 4 years with him so far. i also think another little person in the house is going to be a really good thing for all three of us :)

hopefully i'll not let another 6 months pass before i at least post a family photo!

{photos above: the bottom picture is how isaac will now pose every time i say i want to take a picture for him. arm up against something + legs crossed. he is olan mills picture perfect}