Saturday, May 30, 2015

The Cardiologist - Morgan's VSD

Back in November, Morgan had a Echocardiogram on her heart. This was done to check on her Ventricular Septal Defect (VSD) a hole in the wall separating the two lower chambers of the heart. The Echo was also to ensure that her Pulmonary Hypertension did not return after we had weaned her off Sildenafil, the drug (as well as all the additional medical intervention) that saved her life. The results were good. No evidence of Pulmonary Hypertension and the VSD appeared to be much smaller than before.

So we had the follow-up appointment this week.

Both Kyle and Morgan had been sick this week which meant absolutely no sleep for me. Kyle caught another cold and inevitably, Morgan caught it a few days later. She was tired and miserable with a great deal of stuff coming out of her nose. I decided to swing by our Pediatrician before heading up the Hospital. It was day 3 of her cold and a good idea to make sure she wasn't developing any secondary problems and thankfully proved to be doing alright. Her nose needed to be suctioned out though. This is never a pleasant experience for either of us but gave her a chance to finally rest comfortably because she could breath easily. Good. That should buy me enough time to get through the appointment with the Cardiologist.

Kyle was with us. I figured it would be a relatively short visit since there was no mention of doing another Echo. So big brother was tagging along and doing everything in his power to distract me from the task at hand. This is something he is very good at. But I was glad to have him along and I'm sure Morgan was as well.

So they did an EKG and examination. The Cardiologist asked me to wait while she ran everything by the head of Cardiology to make sure they are in agreement that everything looks fine from the EKG. When she came back I was surprised to hear that the head Cardiologist wanted to perform an Echo on her immediately as it had been a while since her last one. So much for a short appointment. It was a good thing I brought the tablet so Kyle could play his games.

I was a little worried that maybe they didn't like what they saw and that is the reason they wanted to do the Echo. I silenced the worrisome thought. Something I'm getting better at doing. So we were led into a dark room where Morgan was laid on a hospital bed and a tech began the Echo. Kyle thought it was cool. He said, "Wow, what's that?" "That's Morgan's heart, they are looking at it to make sure that it's healthy." I replied. "Wow!" He said again.

After the Echo was completed, we were sent back to the examination room to wait. And wait. And wait. I fed and changed Morgan and tried to keep Kyle from climbing the walls. He was tired of playing his games by then. I checked the time, 4:45 PM. We had been there for two and a half hours. Then finally, the door opened and the head of Cardiology and Morgan's Cardiologist strolled in.
"We looked at her Echo and it appears that the VSD has closed." They then began to tell me the details and spoke about the next time they would want to see her. Not for another two years! "Your daughter's heart looks normal. Do you have any questions?" "None that I can think of." I replied. And with that, we packed up to leave.

Normal, my daughter's heart looks normal! NORMAL!

Thus far, this is not a word that has been used with Morgan much. No need for heart surgery. Her VSD closed on its own! Her heart looks NORMAL!

So, teary eyed and sleep deprived, with two little one's asleep in the back, I smiled all the way home.

Sunday, May 17, 2015

Superman vs. The Black Widow (and I Don't Mean DC vs. Marvel)

Wednesday was beautiful. It was sunny and just warm enough to really enjoy opening the windows and back door. We are ready for warm weather, and no one more than Kyle. While I stayed with Morgan, Kyle took his Superman toy outside to play.

He was out playing for about a half hour when I heard "Mommy, a spider on Superman! Mommy, a spider!" I went out on the deck and asked him where. "On Superman's cape!" Kyle was stomping up the stairs holding his Superman toy. "Where was the spider Kyle?" I asked again. "On Superman's cape, but then it ran away." "What color was it?" I asked. "It was black," he replied. Okay. Kyle sometimes mistakes brown for black but I thought I should look into it further. "Show me where Superman was when you saw the spider?" So Kyle led me to our wood fence by the pine tree. There were two large bricks leaning against the fence and Kyle indicated that Superman had been laying beside those bricks.

I could see the outline of the Superman toy in the dirt. At the end of one of the bricks was a fine, chaotic looking web. Uh oh, was all I thought. Using the toe of my shoe, I delicately tipped the brick over to see what was behind. Sure enough, the ugliest, most disgusting of spiders, a black widow, lay behind. I tipped over the next brick. More! More ugly, nasty, disgusting, horrible, heebie-jeebie inducing bits of hell lay behind those bricks! And nests. God only knew what was in those things, but lots of nests.

I told Kyle to stay back. I asked him if he touched it, if it bit him. He kept saying no. Thank goodness! Ugh. With Kyle following me, I checked on Morgan and then fetched the bug spray from the garage. I know chemicals may not be the greatest to use around kids, but I do not care. When it comes to black widows, it is time to resort to chemical warfare.

I sprayed those horrible, nasty, hateful things and sent them back to hell where they belong. All the while Kyle was giggling at me. I made all kinds of disgusted noises like, "Ahhhh! eeeesh! blah! yuck! yuck! yuck!" When really I was using all kinds of swear words in my head that I really didn't want Kyle to hear.

I ended up spraying the bottom of the rest of the fence, the perimeter of the house and other places that held potential. I'm happy to report the ones behind the bricks are dead and the bricks in the garbage.

You can probably tell that I don't like spiders. I especially don't like black widows. And that incident came too close to Kyle for comfort. Damn spiders. I think it's safe to say that I will be more vigilant about monitoring what little creatures decide to take residence in our yard. And it's safe to say that through sheer luck, Superman and Kyle won. 

Sunday, May 10, 2015

Being the Mom of a Typical Kid and One with Special Needs

Being Kyle's Mom is like day, and being Morgan's Mom is like night. The two are so different and the balance between caring for them both can be a difficult tight-rope to walk. Or so I'm learning. I'm only a year into this, with Morgan turning one, but I can already tell that fulfilling her needs as well as Kyle's is going to be an intense job. Morgan's care is challenging to manage, with the many facets that I have to keep track of. Her doctor's appointments and therapy. Her daily medications and monitoring. Kyle has his needs too. They are more typical and for the most part, not nearly as intense, but he still has needs.
I strive to give them both everything they need. Being able to give everything they both need in a Mom is one of my greatest hopes and challenges. I don't kid myself though, I know all too well that I will mess up. Hopefully I won't mess up very often.
Being a parent is challenging. It tests us like nothing else can. It stretches and pushes us, wearing us out to the point of exhaustion. But it's also the most rewarding experience I've ever had.
Being the parent of a child with special needs is also challenging. The same emotions and experiences are involved, but multiplied. Your heart breaks, soars, and breaks with equal regularity. Tears are always just under the surface, ready to spring up at the slightest provocation. Joy is always there too, just under the surface, coming up any time Morgan does something "typical." Not one thing is taken for granted. The smiles, laughs, sounds, movements, can make the whole world shine.
And feeling discouraged. That is a feeling I have to frequently stomp down. I remind myself that it's a miracle this beautiful girl is here. And I remember to be grateful and to be patient.
My Mom and I attended a Mother's Day Night Event last Friday, hosted by the Utah Parent Center. It was called Unexpected Journey by speaker and performer Michael Ballam. He discussed the ability to rejoice when life takes us to places of challenge and blessings we never dreamed possible. Michael shared his own experiences as a parent of a child with a disability through word and music. 
As we watched the people around us, I commented to my Mom that this was a hard club to belong to. A club where each parent is a member not by choice. By circumstances they cannot control. But as the evening wore on and I was able to hear Michael's son, Ben, perform Some Enchanted Evening, I could see the extraordinary beauty that each human being possesses regardless of medical problems, disability or any other issue they may be struggling with. I was touched.
Being a Mom is tough, whether you have a child with special needs or not. But by having Morgan in my life, I'm simply more aware of the precarious nature of our lives. How incredible and fragile each of us are.

P.S. Mom, thank you for coming with me the other night. I was happy to have you with me. Happy Mother's Day.