Terrible Tuesday

It's only Tuesday, and this week has already hit me hard.
Daniel finally caught the terrible cold that's been going around, and he's absolutely miserable. I knew something was wrong on Sunday when we went to Breakfast With Santa at the mall. Daniel was in high spirits as he chatted with Santa about such things as the weather and President Obama (such a character). He was a bit picky at breakfast, only eating a few bites of donut and a bit of egg. Then, he got a bit short with a new friend of his. The other little boy wasn't really doing anything wrong, but everything he did thoroughly annoyed Daniel. When the boy referred to Daniel as his friend, Daniel snapped back, "You're NOT my friend!" I gave him a scolding and told him to apologize, and that's when I noticed the dark circles under his eyes. He confessed that he hadn't been feeling well all morning, but that he didn't tell me because he was afraid I wouldn't let him go to Breakfast With Santa. The poor little guy still isn't well today. He has congestion, a sore throat and a terrible cough. At least he doesn't have the fever that accompanied many other people's cold - knock on wood. He seems a bit better today, but he's still not all that great.
The Big Appointment Part Two is on Thursday. That's when we're going to hear from Dr. A's colleague about whether we should go ahead with some less invasive treatments for Daniel's hip, or if we should get him into surgery straight away. Now, I am not in denial about the hip issue, but I absolutely refuse to have him get the osteotomy until we get a second (and third) opinion. Yes, it is a serious issue and I want to take care of it in the best way possible. However, the hip problem is just a symptom of another problem. Daniel has mild imbalance in his muscles, since once side of his body is stronger than the other. That's what's causing the hip problem. I'm not a doctor, but it makes much more sense to treat the muscle imbalance via a muscle lengthening surgery than it does to just treat a symptom of the problem. After all, unless we take care of the muscle, the hip will inevitably deteriorate, even after the surgery.
In other news, we are exploring a new therapy treatment for Daniel. It's going to require us to travel quite far to receive treatment, but I do think it will be worth it. More on that later, though.
With The Big Appointment coming up and an unexpected illness thrown into the mix, I've had to move quite a few things around this week. I had to move appointments with the neurologist, pediatrician, physical therapist and dentist this week. Of course, some of them ended up overlapping, so I had to reschedule them yet again. I really think it would save me a few headaches if I had my own personal secretary.
Oh well. When all else fails, there's always coffee...

Pride

I'm a bit embarrassed to admit that our yard is a disaster at the moment. OK, so maybe it isn't exactly Boo Radley's yard. Still, the leaves that have yet to be raked make it stick out like a sore thumb among the perfectly manicured lawns surrounding us. Our immediate neighbors know about the many appointments that have left me frazzled and worn out over the past few weeks, but I still feel guilty. I decided yesterday that enough was enough, and I'm going to get the yard put back into shape today. Daniel asked if he could help me later this afternoon, to which I agreed. I will even refrain from leaving out how good leaf raking is for his muscles. However, my enthusiasm for having a raking buddy waned a bit when he asked to be paid for his services. He then went on to say that he plans to buy Christmas presents for less fortunate children. He told me that some children don't have houses or parents, and he wants to do something to make them happy.
Some may consider Daniel to be less fortunate, considering his diagnosis and everything that has come with it. He doesn't see it that way, though. He sees himself as fortunate because he has a house, a family who loves him, and because he can do so many things. While he does have "why me?" days, and probably will every now and then for the rest of his life, he is happy with what he does have.
It is times like these that my heart swells so much that I think it might burst. Despite all of the worrying about making the right choices in terms of Daniel's care and finding ways to get him what he needs, this has really put my mind at ease.
And with that, I'm off to get started on the yard and dig Daniel's beloved light up snowman out of the basement. Never mind that it's 60 degrees here - not exactly snowman weather. Have a great weekend.

Thanksgiving

Thank you for early morning kisses and "I love you, Beautiful Mommy."
Thank you for your infectious laugh, which can lift my spirits on even the darkest day.
Thank you for your sensitivity and compassion for others, even as you endure things that no human being should be expected to do.
Thank you for your energy, always keeping me on my toes.
Thank you for your intelligence. It helps me to know that even though some things may be difficult for you, you are going to be fine.
Thank you for each and every step you have ever taken.
Thank you for your courage and determination that keep burning strong, even when I feel defeated.
Thank you for your words. You have always been a passionate communicator, and I love the connection we share because of it.
Thank you for your sense of self worth, and knowing that you are exactly who you were meant to be.
Thank you for being here after I came so close to losing you.
I am so thankful for you, my beautiful boy.

Happy Thanksgiving, all.

The Moment Of Truth...

Daniel finally saw the orthopedic surgeon today. Let me begin by saying that Dr. A. is amazing. He took three hours with us - talk about thorough! Now, I know of one parent who complained that he took up too much of her time by making her wait so long, but that's not a problem for me. I would rather wait because the doctor spends plenty of time with each patient than have him rush through in order to see as many patients as possible.
First, we went through the standard height/weight check. Daniel doesn't always look it, but he's one good sized boy - 80th percentile for height (not a big shock there) and the 65th percentile for weight. That's right - Daniel is ABOVE the 50th percentile for weight! I don't think he's been that high in terms of weight since he was an infant. That alone was enough to make my day -my baby is gaining weight! Now, I know that Daniel's build is (mostly) due to genetics; Dan has never been able to keep on weight. Really, come over and watch him eat an entire cheesecake without gaining an ounce - you will be green with envy. But anyway, Daniel's weight - or lack thereof - was becoming a bit of a concern. But no, he's now a hefty almost 43 - pounder, and I couldn't be happier!
Anyway, Dr. A. did the typical stuff - checked range of motion, watched Daniel run around, etc. He said that Daniel looks really great, and he didn't see any reason why we should do surgery right away. He said he wanted to see Daniel in about six months to reevaluate him, but that he seemed to be a perfectly healthy, active boy. With the SMO's and stretching, we would be able to maintain his physical strength. At that, I was ready to walk out of the office floating on air.
Well, that's not exactly what happened. Dr. A. asked if Daniel had had x - rays lately, to which I said no. Daniel hasn't had x - rays since he was about 3 1/2, since we really haven't had a need. After all, he's a pretty sturdy, strong child. Nobody saw any reason why he would need new scans. Well, Dr. A. said that he wanted Daniel to have scans done, "Just in case," ASAP. I thought he would just hand us a script to come back in a week, but he instead whisked Daniel down to the radiology department. Did I mention what an on - the - ball doctor he is? Daniel had his hips x - rayed, and then was sent back to Dr. A's room to play. Fifteen minutes later, Dr. A. came in and directed us to a room where two other doctors were waiting with very solemn looks on their faces. That was when my legs turned to gelatin and I literally almost passed out on the floor. After all, the last time we ran tests "just in case," we found out that Daniel had survived a stroke. What could it be this time? My mind raced to thoughts of the many horrific medical conditions that could attack an innocent child. Oh God, don't let it be cancer - it does run on both sides of the family, but it CAN'T hurt my baby! What about MS, MD, a mitochondrial disorder... please, don't let it be something that will take my baby away from me! Indeed, a mother's mind can go from zero to panicked in less than three seconds.
Thankfully, it's not that bad - but it isn't good. Dr. A. showed me where the ball joint of Daniel's hip is slipping. It looked so terrible on the screen that I wanted to cry. He went on to tell me that many people have it and never even know. They can live perfectly normal, active lives with no problems from it. However, Daniel doesn't necessarily fall into that category. Because he had a stroke, it is quite likely that he could get worse. If left untreated for many years, it could get to the point where he needed a wheelchair and was in constant, excruciating pain. I could feel tears welling up in my eyes by that point. How could I have not known that something like that had happened to my baby? How could I have not known to get him help? I know it was unavoidable, but still... it made me feel like a failure as a parent. Here I have been for the past four years, obsessing over every possible way to help my son, and The Stroke slipped one past the goalie, so to speak.
Dr. A. said that we have options to prevent the slipped joint from getting worse. One of his colleagues is going to see Daniel in a few weeks to go over some non - invasive and quite promising medical treatments. After we give them a try, Dr. A. will see Daniel in March. If things haven't improved by then, we will be forced to talk surgery - and not an easy surgery, either. It will involve cutting into Daniel's bones, inserting screws in them (how we're going to get through airport security is beyond me!), and a body cast for SIX WEEKS. Between nine and twelve months later, he'll need to have surgery to remove the screws. If that's what it takes to fix Daniel's hip, then I will do it. Still, I'm hoping we can avoid it. Again, the other options sound promising, so I'm trying to be optimistic.
It's difficult to imagine that the boy whose hip is slowly but surely dislocating, who may need to have a Frankenstein hip and who could have eventually ended up in a WHEELCHAIR is the same little boy who was racing and jumping around my house just an hour ago. Does that sound like a little boy who is signed up to play youth hockey in a month? He's one tough and amazing little guy, to say the least.
Now, on to a funny Daniel story. After being poked and prodded for three hours, he was exhausted. I held him (yes, I can still hold my gigantic baby) while we waited to pay in the parking garage, and he looked as if he would fall asleep in my arms. The man at the ticket counter looked at him and said, "Oh, what a naughty boy! You shouldn't be making your mother carry you. You're too big for that!" Before I could answer, Daniel snapped at the guy. "Hey, you know what? I had a STROKE, OK? Why don't you try having one and stop being ignorant at me." It may not have been polite, but he spoke my thoughts. I was carrying Daniel because he was ready to fall asleep, so it had nothing to do with his stroke, but still... what right did that man have to make such a rude comment to my son? Perhaps I should have corrected Daniel, but I didn't. Oh, and he got extra points for using the word ignorant correctly. With any luck, our garage cashier friend will think before he speaks next time.
I am now ready to collapse with exhaustion. I'm ready for a long, hot shower and an early bedtime.

Caught Up

It seems that time has gotten away from me - again.
Our cat, whom we lovingly named Crookshanks, has gone home to her real family. Conway the indoor cat escaped from her family's home over two months before we found her. They thought that was the last of their beloved kitty, so they were ecstatic to get her back. While we were sad to see her go, it was heartwarming to know that we were able to help another family. I talked to Daniel beforehand about how giving back "his" cat was the right thing to do, and he took it surprisingly well. He handed Crookshanks/Conway to the family's young son and said, "I love your cat but you can have her back now." I think he proved to me that he is ready for a pet that doesn't live in an aquarium, so he may get a surprise in the coming months.
Halloween has come and gone, and Monkey Boy had a great time. He dressed up as Harry Potter, and made a precious little Gryffindor. He even nonchalantly braved a haunted house that even the preteens wouldn't approach. When an especially horrific ghoul pretended to attack him, he casually asked, "So, do you have any candy for me?"



I'm still waiting on pins and needles for the appointment with the surgeon. Unfortunately, Daniel is scheduled to see his neurologist at the same time. Unless I can figure out a way to be in two places at once, we're going to have to cancel the neurology appointment. I hate canceling appointments, especially since the big ones are virtually impossible to reschedule.
C'est la vie, I suppose.
That's our week in a thousand words or less. Stay tuned for more chaos from the monkey house.

The Monkey, The Cat, And The Goat

After begging for either a sibling or a pet for over a year, Daniel has finally gotten his wish.
No, I'm not pregnant. We are the (temporary) owners of a very sweet cat. He (or she - we're not really sure yet) is mostly white with just a little spot of gray on his head. He showed up about three nights ago and has been living next to our front porch ever since. After building up quite a friendship over the past few days, we decided to let him inside today. He's also very friendly and sweet - and coming from someone who isn't particularly a cat person since she's very allergic to them, that's saying something. Anyway, the cat's temporary name is Crookshanks. No, he doesn't look a thing like the Harry Potter cat, but that's what Daniel chose. So Crookshanks it is. At this point, even though I'm quite fond of Crookshanks, he is not going to be our permanent pet. I have put up a Craigslist ad, we're going to put up ads around our area soon. If his owner doesn't claim him, we plan to see if any of our friends would like to keep him. As a last resort, he'll go to a no - kill shelter about a half hour from here. I have reminded Daniel several times today that Crookshanks is not staying, and he seems OK with it - for now.
We're also going to the farm this afternoon for pumpkin picking. Daniel keeps talking about all of the animals he wants to see, and the goats are at the top of his list. Now, if we find a stray goat wandering around and begging for a bowl of milk, he's just going to keep on moving. I love animals, but I have no desire to live in a zoo.

Reflections

Daniel went to therapy today, where he spent an hour racing up and down the halls on a bike. His homework assignment this week is to ride his bike every day. Now, why couldn't I get such fun assignments when I was in school? Haha.
While we were in the waiting room before the appointment, Daniel saw a man wearing a Patriots jersey. That was enough to launch him into a long monologue about Tedy Bruschi, a man who continued to play for the Pats AFTER surviving a stroke. Daniel once again reminded me that he had a stroke just like Bruschi, and he too likes to play football. That caught the attention of the woman next to us, who asked if she had heard correctly - did my little boy really have a stroke?
The look of shock on her face when I responded was one with which I am very familiar. Most people find it incredible when they learn that children can and do have strokes. In our support group, I don't think there is a parent among us who had heard of pediatric strokes before becoming the parent of a survivor. Anyway, I went on to tell her a bit more about pediatric stroke. She was one of the "good" ones - the one who asks questions in a respectful manner. She didn't ask what I had done to cause my son to have a stroke (always a good way to send me from zero to rage in less than three seconds), but instead asked what can cause pediatric stroke. I told her of some of the possible causes, but that most cases happen for no apparent reason.
The look of bewilderment on our new friend's face served as a reminder of how amazing Daniel is. Yes, he's like any other little boys in so many ways - very bright, curious, funny, happy, energetic, and able to be a royal pain in the butt when the mood strikes him. However, he has overcome so much in his short life, and the smile has barely left his face through it all. Indeed, he is one awe - inspiring little boy, and I am so proud to be his mother.