Wednesday, February 19, 2014

Are You There God? It's Me Liz.

January was one of those months.  The kind of month that knocks you flat on your butt...feeling lost, alone and scared of the future.  Not alone in the literal sense, but more like isolated or removed from the "real world".  That world where everyone seems to be doing just dandy living their lives while our family spirals.  Feeling overwhelmed with everything.  Scared of what's next because what's happened lately around here has been just too much. Questioning whether God is even hearing our prayers and seeing our distress.  I've been here before.  After Lily's birth, during Lily's hip ordeal and especially last August when my Dad quickly succumbed to cancer.  I even teetered on the edge when the twins and Leo were diagnosed with autism, but somehow didn't fall deep into the pit of despair.  Each time, we rose back up bruised and battered emotionally, but in the same sense stronger for what we endured.

The past 6 months alone have been quite worrisome, demanding, and downright devastating. Well, if I'm really honest the past 2 years have been one big long roller coaster ride and I'm talking about the giant flip you around and turn you upside down traveling well over 60 mph roller coaster that when you get off you're green, head's spinning and unable to stand.

If you're a long time blog reader, you're probably familiar with Lily's hip hell.  You read about my dad dying late last summer after an shockingly short battle with an aggressive cancer. What I haven't shared much about is the daily strain and stress...the aftermaths of those events and others.  I keep a lot of happenings close to my heart because a part of me feels my children need a bit of privacy and another part of me had decided a long time ago not to air every little grievance with the general public.....afraid of judgement and a dislike of criticism. There will always be some who think we brought most of this on ourselves.  We chose to have 7 kids.  We chose to adopt.  We chose to adopt a child with special needs and out of birth order.  We chose to continue to have children even after our older children received pretty life altering diagnoses.  I didn't need nor want to hear negative opinions.  So I've kept silent for the most part these past few months, all the while hurting and hoping and praying for answers...for help...even perhaps divine intervention.

Before you think I'm about to go off the deep end with depression or insanity let me reassure you I'm not.  Nor is Matt.  It's just that our lot in life isn't what we ever imagined or dreamed about.  When we started out newly married, we just wanted a big healthy happy family.  We talked and planned of the endless possibilities of where our life would take us usually peppered with our own childhood experiences growing up of those special memories to guide us.  We wanted to replicate what we had as kids for our children never thinking our lives would take such a dramatic turn headed down a road neither of our parents ever drove.

So I'm sure you are wondering what in the heck is she alluding to and impatiently wondering what happened last month.  I would have to say first off that cumulative events that happened last month were as they say the straw that broke the camel's back.  I was already down and hurting from my father dying and then going through all of the holidays without him.  We were also hit with a stomach flu bug over Christmas where I barely saw any of my extended family because everyone was so sick at 4 houses and as we slid into January, I hoped for a reprieve from sickness, sibling angst (my kids with too many snow/sick days sitting in our house with little to do) and bittersweet memories of my dad often clouding my thoughts.

Instead we got more snow, more bitter cold, more sickness, and if you can imagine more stress.  We were often trapped in the house bored since everything was cancelled and personally we didn't want to brave the subzero weather very often with a bunch of little ones. Bickering was rampant among the kids and I was quite envious of Matt escaping to work most nights.

During January, we learned of a few new diagnoses for a few of our kids to add to our ever growing eclectic collection of genetic mishaps:

Izzy was diagnosed with anxiety and ADHD-Inattention.  We weren't overly surprised and I'm glad we can now address her needs more clearly.  Izzy was diagnosed a few years back with Hemihypertrophy and the Neuro-Developmental Pediatrician and Geneticist (who originally diagnosed her with Hemihypertrophy) thinks most of her issues stem from the effects of Hemihypertrophy.  You can read more about what Hemihypertrophy in this old post I wrote HERE.  Izzy already has an IEP (Individualized Education Plan) in place for speech and gets pulled out of class for extra help in speech and for reading.  She's been struggling in varying degrees with all of the subjects at school, but when tested last year by the school she tested "average to low average" and in turn only qualified for a little extra help that I mentioned above.  Now that she is diagnosed with ADHD-inattention and anxiety, the school will be tweaking her IEP hopefully putting in additional supports and goals.  We are also trying out a few medicines to help her with the anxiety and ADHD.  She's now currently on the same medicine Lily is on called Zoloft (which we've had great success with Lily) and Focalin for ADHD.  She seems to be tolerating both very well.  The bottom line is we just want her to start having some successes in school.  She loves the social side, but we could definitely see her frustration mounting as the months went by.

Next, Reagan (and possibly Leo and Kaelan) gained a new diagnosis of Ehlers Danlos Syndrome.  Reagan has very large stretch marks on his back.  It seriously looks like someone hit him with a whip or belt several times and left red marks/scars.  I've shown them to a couple of doctors, but no one seemed overly concerned about them.  Last October, Reagan went in for his 17 year well check and we noticed he'd grown a couple of inches, but had not gained any weight for 2 years.  He is about as skinny as you get and we allow him to eat pretty much anything he wants trying to get him to gain weight.  He just hovers at 120 lbs at 5' 10".  Last month, he and Kaelan went in to see the Neuro-Developmental Pediatrician and Geneticist (same one who sees Izzy) who ran all of the Exome Sequencing testing last year on all of us for their 6 month "autism" check up.  I brought up the stretch marks again and told him there appeared to be more on Reagan's back.  He looked at them again, agreed there were more and said it was most likely a connective tissue problem and when you have a connective tissue problem you have to worry about the heart.  :Sigh:  These health issues just seem to keep piling up on us.

So Reagan is scheduled to have a Echocardiogram in a few weeks to rule out any heart concerns.  The doctor also had his genetic counselor look at Reagan's and Leo's genetic testing results to see if anything came up for connective tissue disorders.  Ehler Danlos Syndrome (type 1 or 2) was positive for both, but it is a guestimate on how much the "mistake" in the gene is affecting either boy.  They are also looking into getting Matt's, mine and Kaelan's testing looked at as well by the lab who has our blood to see if any of us show we have the "mistake" in our gene as well.  Matt or I would have passed it to the boys.  We will need to do Echo's on every one that turns up positive for Ehler Danlos and we are desperately praying for good results.  Dr. Google pretty much scared me when I delved too deep into some of the health risks of the syndrome.  I've pretty much banned myself from contacting Dr. Google for the time being.  :/

The icing on the cake for the month was Lily having a severe allergic reaction to the antibiotic Omnicef.  Her first symptom was she struggled to walk acting stiff and achy.  I then noticed reddish purple splotches under her skin on her thighs and upper arms later that night. Nowhere else did I see the rash and she had no fever, but she seemed so uncomfortable.  Her pediatrician thought it was a virus.  Two days later I took her in again because it was so much worse.  The rash had become somewhat raised (lumpy) and mottled.  It almost looked like the individual lumps of the rash were growing and starting to connect to each other and felt very hot to the touch.  Since the pediatrician and her partner could not determine the cause, they referred Lily to a dermatologist immediately and I drove her straight to his office.  He and his wife (who is also a dermatologist) looked at Lily's skin and narrowed their opinion to a severe allergic albeit strange presentation reaction to Omnicef.  By the time they saw her, she hadn't had a dose in a week.  They put her on Prednisone for 12 days and within 24 hours she was feeling a lot better.  We finished her last dose of the steroid last Sunday and thought she was good to go until this past Friday the rash started coming back.  I called the emergency contact service and they connected me with her doctor who was out of town.  He prescribed 10 more days of Prednisone and wasn't really surprised or concerned the rash had come back due to the original severity of it.   Since she had responded so well to the first round of Prednisone, he felt 10 additional days would knock it out.  We are praying it does.

I'm not going to go into any more of the gory details of all that's been going on, but suffice it to say we've had our fill of turmoil and tension.  The crisis tidal wave we've been riding on has led us to making a few changes in our lives and schedules.  We needed to simplify things to a more manageable level and have decided first off to pull the girls back to their home school that is right next door to our house.  We chose to send them to another elementary school within our school district this year with the hope and a promise for a higher functioning Lifeskills classroom.  I think the school and their teacher were doing a very nice job with both girls and we saw a lot of improvement in their reading, keyboarding (typing) and math skills this year, but time has become like gold to us. The school was often a 15 minute extra drive for us just one way.  We seemed to be making that drive way too many times each week by either driving Leo (who also attended school there) or all 3 kids transporting to and from therapy almost daily.  It was taking away our peace and there was no harmony for our kids.  I felt like we were so edgy and constantly yelling or ordering the kids to hurry up and eat, hurry up and get dressed or even hurry up and get in the car.  Have you ever tried to hurry up someone on the autism spectrum or someone with Down syndrome?  They don't like to all.  We ran late everywhere and passed each other going from one thing to another.  Something had to give especially after last month.  So the girls will start back at their old school (where Izzy is in 1st grade) next week.  I hope the transition goes well and I'm pretty sure the girls will be thrilled to see all of their old friends and teachers.

Another big change we've done is pull Leo from the public school's development preschool (He will still be getting his therapies and go to his private Dev. Enrichment Preschool).  Partly because of the drive and partly because Leo is almost 5 years old and will most likely be starting full day school next year whether it be Kindergarten or a full day hybrid of their Developmental Preschool.  The poor kid has barely experienced life outside of therapy since he turned a year old.  We've never taken him to the Children's Museum.  I never took him to a Gymboree class, going to the pool is a rarity and I can count on one hand how many times he's been to the park.  I barely take him anywhere because we are always running around going to therapy or school.  So we are taking the next 5 months to cram as much normal fun preschool type activities into Leo's world with some of our newly acquired "time".  When the older 3 boys were little we took them everywhere.  Of course we only had 3 kids back then, but autism didn't stop us and it's time for Leo to have a little normalcy that most 4 to 5 year olds have. So watch out Children's Museum, here we come!  I, for one, can not wait to see Leo's reaction.



Anonymous said...
I hate to be that person who second guesses doctors' diagnoses but please look at this article about HSP, then at google images of the rash. It gets better with prednisone but worse when off, since it's a self-limited disease and meds help inflammation but don't cure the cause (and taking omnicef off the table is a big thing if it's a wrong diagnosis). It used to be called allergic but itsn't actually an allergic reaction. You'd also be missing kidney tests if this is HSP and they are mis-attributing it.

Meg said...

Hugs to you! It has certainly been quite a difficult time for you and your family. I hope the coming months bring only good, better news, and happiness.

Unknown said...

Liz, you continue to inspire with your fierce love, open heart and transparency. Praying for rest, peace, any services, therapies or diagnosis that would be helpful and lots of children's museum outings! :) xoxo

Susan said...

Hi Liz, I am praying you as you have so much to deal with. God did bless you with a big heart to love your family. My dad died a few months before yours so I know your loss.
Oh, I found you from Tera.