Mother Guilt - Time for Me

I just started this blog, don't have any followers yet, and I need to take a break for a few days.  I'm having surgery tomorrow morning to fix an issue caused by a varicose vein in my right leg.  The varicose vein was a "gift" from my lovely little one during the pregnancy, almost 8 years ago.  About 7 months ago I started having pain in my knee and I started with an Orthopedist.  He didn't find the cause but wrote me an Rx for PT and I ended up going to a friend who works in a clinic not far from my house.  In spite of the pain, it was wonderful to have some down time talking to, and being worked over (!), by a lovely woman whose company I truly enjoyed.  Unfortunately, the pain still didn't go away and my leg started to swell.  Cutting to the chase, I ended up being diagnosed with Chronic Venous Insufficiency in my right leg and I'm going in for surgery tomorrow to correct the problem.  The title "Mother Guilt" has to do with the fact that I will probably not be in the mood to homeschool the little one the next few days and I hate the thought of losing valuable time.  "Time for Me" is what I need right now, though, and get so little of in the course of our crazy days.  I know any other Mom reading this blog eventually will be able to relate!   So, I'll take a break, attend to a personal issue and then carry on with the story of the little one's early days/months and go from there.

More or Less

Taking a quick break from writing the story of little one's first months.  I've been homeschooling her since last November.  The reason for that will be told in an upcoming post because it's pretty involved.  Suffice it to say that I got to the point of realizing that she could continue on in her inclusive Kindergarten setting without making academic progress and not being supported by staff to the degree she needed, or I could be proactive and take on the job myself.  I'll write much more on that later.  This week we've been working on the math concept of "more" and "less."  What I wanted to write about here is the understanding that all young children and especially young ones with extra chromosomes, need a lot of time to process new information and the learning curve is not straight but can be very bumpy.  Two days ago she seemed to have mastered the concept of more and less, using pictorial representations and also manipulatives.  I drew 4 stars on one side and 7 on the other and showed here that one group had less and one had more.  We did this over and over with varying quantities in each group.  Then we used the little counting bears and also colored disks.  After teaching her for a while I started "testing" her and she quickly got most of them correct.  I was thrilled.  Yesterday morning we did the activity again and lo and behold, she missed every single one.  She kept saying "less" for the group that had "more."  My thrill from the previous day was gone.  When this sort of thing happens, and trust me, it happens pretty often, I have to check my emotions (hard for me!), and get on with the task.  It is very difficult not to get overwhelming emotionally tied up in your child's ability to learn.  But, when this happened, I put away the materials and knew I'd come back to it later.  The day went by, we had a playdate with her old babysitter and her 19 month old (cute as a bug!), and then late in the afternoon I brought out materials for more and less again.  Guess what?  She got 9 out of 10 tries correct!   I'm not convinced she has mastered the concept yet, but we'll keep trying.  It takes faith in your child and motherly perseverance, but our kids can achieve much in life!  And, whether or not we continue on the homeschooling path, I will always treasure the blessing of being the first person to witness my child grasping new concepts and accomplishing a goal.  That truly is priceless.

Home then Back

So we had the potential diagnosis of Down syndrome, which was confirmed via the genetic test by the end of her first week; and add to that the life-threatening version of TMD.  Little one came home from her birth hospital and was at home for a week, then she was admitted to the NICU at a different hospital after crashing in the day treatment area while they were trying to do a blood draw to check her CBC.  This first week could be multiple posts in and of itself but I'm just going to move on and write an abbreviated story of her 56 day stay in the NICU.  She would have been admitted to the PICU because she had gone home in between her birth and the time she crashed, but there was an RSV outbreak in the PICU so they sent her to the NICU instead.  Side note : ironically, her sister had a 6 day stay in the same NICU 7 years earlier when she was born, so when little one was admitted, I knew exactly what the area would look like.  Thank heavens for small favors. 

The much abbreviated version of her stay in the NICU at Legacy Emanuel is as follows : admitted at 9 days old with critically high white blood cell count and after "crashing" in the day treatment area.  At just over 2 weeks old, she developed a tear in her duodenum which resulted in emergency surgery.  At around 3 weeks of age, she was given low dose Ara-C for 4 days, a chemotherapy drug, to try to reverse the climbing WBC, after several complete exchange blood transfusions had little to no effect.  She had a broviac catheter placed to receive the chemo med and for blood draws and other meds.  The chemo did the trick and ultimately put her TMD into remission (thanks be to God!), but then she still had to recover from her surgery, have daily blood draws to check her counts, be seen by nearly every type of specialist in the pediatric universe :  Neonatologist, Hematologist/Oncologist, Cardiologist, Endocrinologist, Gastroenterologist, Audiologist, you get the "gist" of it.  I guess we missed out on Pulmonologist and several others, but who's counting!  There's nothing quite like being privy to a heated discussion between your newborn's GI doc, Hematologist and Neonatologist over how much the initial disease had affected her liver, whether she needed a liver biopsy and whether or not she'd be a candidate for a liver transplant.  Oy!  I felt like I was having an out of body experience, hovering over my child's bed and yet not recognizing that tiny body hooked up to all those wires as mine.  Another thanks be to God, her liver made a full recovery and she didn't need the transplant or even the biopsy. 

While waiting for a full recovery from her surgery and praying for the blood disorder to go into remission, she developed what is known in the medical world as "ascites."  That is fluid build-up from the liver not functioning properly and the nurses described her abdomen as "angry."  You couldn't miss why.  She was bloated and stretched almost to splitting, at least it seemed that way.  So she also got to have daily pokes with a huge syringe to draw off the liquid.  Not a pleasant site for any Mom to witness.  I'm sure my husband was thankful to have his day job.  Then as the chemo promised to do, it sent her WBC crashing into the realm of neutropenia and landed her in isolation to ward off infection and prevent sepsis.  MEDICAL DISCLAIMER inserted here : I a not by trade a member of the medical community.  I just learned more medical vocabulary than I ever would have wished to in a few short weeks after my lovely daughter's birth.

The little one proved to be a prize fighter and she escaped the clutches of Death several times during her hospital stay.  What ended up keeping us there longer was the need to get enough nutrition into her weak body.  We chose the G-tube option and that was her final medical procedure as a neonate.  We came home on day 56 with many good and many painful memories, and lots of equipment, plus a crash course in some basic medical training such as how to schedule and administer 8 different meds a day and how to feed our child using a breast pump and a variety of tubing.  To be continued.....

From the Top

I'll start working on telling my little one's story, from the time I found out I would be blessed with daughter number 2 at age 40(!), through a relatively easy pregnancy and labor/delivery, to the devastating (at the time) news of what came with her beautiful little baby package, and over time get us up to now.   Let me start by saying that we've certainly had more than our fair share of ups and downs, just like the writers of so many other blogs I've read, but all in all I wouldn't trade our experiences for anything.  Even in the midst of terrible darkness and fear, plus anger and anxiety and total despair at times, my life would be so much less without my wonderful child in it and without the people I've met since she was born.  God is good and He has seen us through so much so far, and we know He will stand by us to the end. 

I won't go into the details of my pregnancy with the little one or even the delivery except to say that both were really pretty easy over all and until she burst forth unto the world, we didn't have any concerns beyond what in the heck was I doing getting pregnant at such an "advanced maternal age"!   We had been an only child family for so long, not necessarily by choice, that we were shocked and unsure when the pregnancy test came up positive in the summer of my 39th year.   We had considered foreign adoption a couple of times but when I thought I was ready for that my husband wasn't, and then by the time he decided he was ready, I was already so caught up in our only child's life and making plans for my emancipation back into the working world, that by then I wasn't keen on the idea anymore.  Got to take a moment here to say how much I do admire families who adopt!

Back to the matter at hand - I didn't have any prenatal testing beyond an ultrasound at 20 weeks.  My OB/Gyn and I shared a laugh over the fact that I was finally, and unexpectedly, pregnant and then she asked me what I would do if there were a problem.  I said I would do nothing and we would keep the baby no matter what, and she advised me not to have the testing.   The ultrasound did not cause any red flags and all we knew from that was that we were having another girl.  So, life went on as usual until almost the 39th week.  Little one was born 9 days early, and weighed in at 5 lbs, 7 ounces. A little time lapse here.... the question was, did she have Down syndrome or did she have congenital Leukemia, thanks to a critically high white blood cell count on repeated CBC's.  By the end of her first week out of the safety of the womb, it turned out she in fact had both!  Well, in truth, she did not have full blown Leukemia, but she was born with Transient Myeloproliferative Disorder, or TMD, also sometimes known as Transient Leukemia for the way it presents.  Many kiddos with TMD go into remission without treatment, but a smaller percentage need pretty drastic intervention, such as receiving chemotherapy in the NICU.  That was a first for the docs and nurses at our local hospital.  Our family likes to give them something to talk about for years to come.  No run of the mill life threatening illnesses around here.  To be continued.....

My How Time Flies

Today was a blur and I'm feeling guilty for not spending enough time with the little one.  I am homeschooling her during the week, more on that soon, but the weekends go by really quickly with errands to be run, and chores to be done, plus walks for the pup, mall runs for the teen, church, horseback riding therapy, and piles and piles of laundry.  So here it is almost 10 pm where I live, and I have no curriculum plan for the week yet again.  I also promised myself that I would try to post a new comment to this blog every day, but that might not have been a realistic goal given that the clock moves faster around here, or at least it seems to.  The good news is that since I was gone most of the day, she got more quality time with her Dad, and that's always a good thing.  Now, if I can just hit the ground running tomorrow and not hit the snooze button....

Embarking on a New Journey

Okay, so I have to admit I have been what is called a "lurker" in Internet lingo. I've been reading many wonderful blogs telling the life stories of some really great families and their kids with disabilities for a while now, and I finally decided it was time to add my own blog to the list. I'm hoping that keeping this online journal will be therapeutic for me as I struggle daily with the demands of being Mom to one child with fairly significant developmental delays and moderate behavioral challenges, who is also one of the brightest constellations in my universe; and dealing with the ups and downs, laughs and arguments shared with a bright, amazing teenager who is trying desperately to grow up too soon. I'm homeschooling the little one for now and driving the teen all over creation; and each day brings its own set of rewards and challenges. Throw in trying to create a homemade dinner now and then for the husband and caring for a crazy pup, and I'm pretty worn out at the end of the day. So, I hope to use this blog as a way to put words to our experiences and a way to connect with the big Internet community out there of families who can truly relate to what we've been through and our hopes for the future.