It’s June. It doesn’t feel like it. At least the weather doesn’t. It’s cool and rainy. I guess that’s OK for now – while we are still wrapping up school.
It has been a long week.
I don’t usually leave my blog unattended for so long. I am behind at writing. I am behind even further at my reading. It seems the days just blend together lately.
It is June, and when you are a school teacher, this is a month of eager anticipation, and volumes of paperwork to be settled. There are boxes to back and things to carefully put away in preparation for the fall. There isn’t much time to be still.
Well – in another 2 weeks it is!
It’s June, and when you are an advocate – you do take a few minutes to celebrate the victory that put speed bumps on the street where you had the accident that damaged your back forever and ever. You are grateful for the citizens, and politicians alike that fought relentlessly. You are thrilled by speed bumps, but you still want that stop sign. You celebrate with a glass of wine – or two.
It’s June though, which means that damaged back has to ache longer in between trips to the chiropractor, and the PT you promised yourself seems like it may never happen. You are the mother. You will get by.
It’s June and when you are a Mom of a kid with Cowden’s Syndrome you spend 2 or three afternoons a week at physical therapy to make her chronic pain bearable. Not totally sure the pain is related to the Cowden’s, but sure it’s related to SOMETHING, you scoff at the denial for school based PT and wonder what they would say if one of them could spend a morning in your house watching your 9 year old walk like she’s 90. You balance those PT appointments with swimming lessons, all in preparation for the team she will join. The team she is desperate to swim on successfully, and God willing – pain free.
It’s June, so you balance the breakthrough of the virus on that adorable immune compromised 9 year old’s face with increased doses of the antiviral medicine and extra trips to the pediatrician. It’s June so when it’s not pouring – you make sure she has a hat to keep the sun off her face. And when you look at the dose of antiviral medicine you start to feel a bit guilty, nervous maybe, about her liver – and all the prescription medicine. So, you take a chance and toss the Celebrex to the side. Hoping maybe, just maybe she can get by without it.
It’s June and its raining. You feel a little guilty about “forgetting” to tell her you stopped the Celebrex, but each day you hear the complaint of another joint, another ache, another pain. Ten days later you abandon your hopes of relieving the stress on that young liver, and you relent. Too many Tylenol – not cutting it. Celebrex it is.
The war rages – all the months. The battles are won and lost on a regular basis – but the war looms large. I don my armor – a large binder of medical facts, bloodwork, and reports. I gather my inner strength.
It’s June. Summer vacation is coming, but there will be no camp in our house. It doesn’t fit in with the schedule.
Every six months. Every doctor. Forever. Mine, and hers. Different doctors. Different times. Different facilities.
I am getting better at the scheduling. I have learned to bunch them together. So, we go in February and again in July.
For Meghan it’s the thyroid first. That foreboding nemesis. Ultrasound, appointment… and we will see what comes next. Then its the AVM follow up, and the genetecist. That’s just the last week in June.
Mom has an MRI to schedule to look at that spleen, some more surgical follow ups…
There will be 15 appointments before the 2nd week in July. That’s if every one goes well.
This is how it has to be. We have to work, she has school. We can’t have the appointments all throughout the year, so we must endure them all at once.
It’s June. I am already tired. Wrapping up one full time job to focus on another. I feel my anxiety rising.
Getting all my rest. Gathering my inner strength. Armed and ready. Kicking Cowden’s to the curb…
We can… WE WILL!
Ever feel like you lived a few days all at once? Yep. Today would be one of those days. From the physical to the emotional – I am shot. And it is only the BEGINNING of the week!
We walked today, my mom, my friend and I. When Mom picked me up this morning we were both a little grumpy. then we both cried a little. It just seemed wrong heading out without Meghan. But I took some solace in the fact that when I kissed her at 6:30 AM her skin was blessedly cool to the touch. Maybe it was over.
So we picked up our friend, and determined to enjoy the sunshine, we were in central Park a few minutes after 7. Professionals by now, we do all of our shopping, and gathering of “free stuff,” then we walk it to the car so we can race pretty much unencumbered. And Meghan, for having not been there, made out quite well in a wide array of paid items and “free stuff.” Well deserved!
Manhattan was crowded as ever, but thanks to my aggressive little Mom we were up close to the front when the race began. We moved aside to allow for the runners and then had a really enjoyable walk without the tight crowds we sometimes experience. We got to chat and walk, and enjoy each other and the sunshine.
So after a fun and exhausting morning we headed home. Meghan was so thrilled that we hadn’t forgotten about her. I was less than thrilled to see her on the couch, a clear indicator that the fever returned.
So, just like that came the transformation from walker to Mom. We started making plans for who would watch her Monday. She reminded us about her friend, and ours, a neighbor who loves her like she is her own. Meghan said, “Just ask Patty!” So I did. Patty will be here at 7:15.
Thinking it was all taken care of, we sent Meghan for a nap. Restless a few minutes later, the thermometer revealed a scary 104.2. Knowing what he would say, I had to call the pediatrician anyway. That number is too high for me. So, he happened to be in his office and invited us to come in. (I adore my pediatrician.)
He spent a few minutes sizing her up. The Tylenol was starting to work and she was down to 103.7. After an agonizing 20 minutes he sent us for blood work at a local ER. I am not a big fan of the local hospitals, but thought perhaps a brief visit MIGHT be ok. Not so much.
In the literally blood spattered walls of a tiny room with no access to TV or cell phone, we sat while they took 2 blood cultures and a CBC. She admitted at 4 PM with a fever of 102.9. They gave her a dose of Motrin. We waited for the blood for almost 2 hours. As I grew anxious they told me they were having trouble finding it. Almost ready to leave, it turned up – with a terribly low white blood cell count, but nothing else noteworthy. We left quickly, being discharged at 6:30 with 99.4, having learned/remembered 2 things.
1. It is not OK – even for a short visit, and
2. Motrin – Motrin – Motrin
We had a hard time deciding who got to shower first as we cleaned off the filth we had just been in. Dinner, some TV, WINE(for me – not her!), and it was off to bed. Fever free at 8:30.
Headed up now for the 11PM Clindamycin. Who knows what tomorrow will bring? Every day is a great adventure!