Did you notice that? For the first time since June, Kendall made it an ENTIRE month without a single inpatient stay! HOOOORRRRAAAYYYYY!!!!
Seriously though – it’s just been a tough couple weeks! Kendall’s med schedule would be dizzying for an inpatient stay. At home, it’s nearly enough to shut down our carefully constructed house of cards that keep us all fed and clothed in clean clothes! I could go on and whine about how tough the last few weeks/months have been trying to be both full time nurse and full time mom, but i’ll spare you. Because even if i wanted to describe it to you, I don’t think I could. And at the end of the day, we’ve survived. I realize how lucky we are to be in the situation we are in, and that kind of gratitude is invaluable. It doesn’t make it easier on a day to day basis – I still whine/yell/get overwhelmed/snap at my kids/snap at strangers due the exhaustion and stress – but when i am able to stop at the end of the day, and take a few breaths, and reflect on the day and all that it has held…I am grateful.
Grateful for how blessed we are to have our house, with heat that works. Grateful for insurance. Grateful for the medications that are keeping her healthy and alive and home with us. Grateful for the craziness because it is our choice to be crazy at home instead of bored at the hospital. Just so grateful, for so much. It is hard to put into words. But i do know how blessed we are. I only hope that I am able to pay those blessings forward somehow.
Tonight as I sit here trying to sum up my feelings on all that November is and was and represents – and prepare for all that December holds – that is about the only thing that is playing through my mind. How very much we have to be thankful for – and how very much we have to celebrate over the upcoming season! I am tired, but excited. December holds so much to be thankful for and excited over – starting with tomorrow! I will be flying with my mom and my sister from Chicago to Boston to visit my baby brother, his wife, and their brand new baby boy! I am so looking forward to this teeny little break – and cannot thank my dad and husband enough for their help in coordinating this fun trip! It is short but I am hopeful that it will be just the mental break I need to be in the holiday spirit for the rest of this month! But beyond that – I am just looking forward to spreading Christmas joy and spirit in the hearts of my beautiful baby girls.
Ok full disclosure – I had a headache from somewhere in the 2nd layer of hell so I took some meds for it which are making it hard to form coherent thoughts. I also have to be up to leave for the airport in about 7 hours and still need to do some last minute packing. So I should wrap this up. But for everyone who did NOT see the update yesterday on facebook – we got outstanding news about Kendall’s DVT (blood clot). There was no evidence of the clot in the vessels near her heart (where we did the ultrasound based on where the clot was found last time)!!! It would appear that I either did pull it out chunk by gross chunk (I have a whole folder of “blood clot pics” on my phone!), Or the medications did their job and blasted it to oblivion. Either way – I’ll take it! She will remain on the Lovenox (shots into her legs) for the next two months at least – and at that time we will be looking at either continuing that med, or finding a way to get the medications directly into her veins (where we are trying to stop the clots from forming!) So the medications are working – almost too good! The thinning of her blood means that she is at greatly increased risk of bleeding. Bruising. Starting to bleed and then not stopping. For a kid who a.)falls a lot and b.) bleeds a lot from sources both internal and external – it’s challenging to say the least. In the hematology office yesterday she was putting on a spectacular show of just how challenging she is – trying to do somersaults on the floor, sliding off the exam table multiple times, running into sinks and doors and low-hanging counters. Thinking the Cinderella glass slippers might need to be retired for a few months…. I just rolled my eyes at all her antics – her nurse case manager actually let out a small scream of fear at one of the incidents. It was quite comical – but at least they all know – welcome to kendall’s world! She is having some blood loss from somewhere internal (be it the extra labs she needs run, the blood in her urine that we know about, small GI bleeds that we have some evidence of, other randomness) – but her bone marrow is doing a good job compensating right now, so it is just something we are keeping our eye on.
All in all – we have a lot to be thankful for, grateful for, lots and lots of GOOD to be focused on. We are so thankful for all of you – dear family and friends – for everything you do to help us survive these crazy times. For the cards you send, the encouragement you bring, the hugs, the everything. ok i’m losing words again quickly…I will try to be better in December about blogging more.
Keep on keepin on my friends. May your Decembers start out in the loveliest of ways!
Love and hugs~