Redefining Perfect

Angel had her go-round with the Developmental Pediatrician on Monday. Avoiding discussion of the horror of a day surrounding said appointment, I’ll get right into the actual facts and (lack of) diagnosis!

The short of it – we may never know what causes our little one to struggle.  It may be that she was born so early, or just a quirk in her brain that makes her crooked physically and mentally. 

However, that won’t stop us from a) looking for a cause and b) getting her all the help she needs.

To that end, the Ped did see her unevenness in her gait (we walked and/or ran down a long hall to display), and tone.  She again listened and heard all I had to say on everything we’ve been through the past couple of years with her.  She gave advice and took a good look over her, just as she had with Riley.

Her solutions here were a little more complex, but not by much.

1. We are doing an MRI on her brain.  Taking a good hard look to be sure that there is nothing specific or noteworthy that could have caused this.

2. We are doing a full-run genetic test. AFter a pre-approval by her dual insurance plans, of course. 

Why are we doing these?  Because the ped recognized that almost as much as we want to learn the HOW’s of Angel’s issues…we also would like to know WHY’s.  She said that while it is likely just her early birth date, we should exhaust the remaining bit of question.

And onto the HOW’s…

1. Restarting Speech Therapy
2. Restarting Occupational Therapy
3. Having a psychological exam done to determine need for Behavioral Therapy
4. Returning to the Feeding specialist for  monthly visits
5. Restarting Physical Therapy

All of this will be done at Riley Hospital, and all should be covered by insurance (if not primary, then secondary) as part of her diagnosed issues.  Thank goodness for Indiana’s wonderful Special Needs insurance (now if only we could get Riley qualified for it *sigh*)…it has saved us more than I can ever say.

And that is where we stand now.  Therapy, therapy…and more therapy.  I’ll be doing a bit more traveling once it all gets started…but if it helps, it’s all worth it.

Last year I was afraid to try again.

Five months ago I took the leap.

Four months ago I was afraid to hope, but felt it creeping in.

Today was the big day.  Technically it was the FIRST of TWO big days.  We met with the Developmental Pediatrician. It was a scant hope, but it was my last ditch effort. The final specialist in a long line of specialists and the last thread of hope in a dim and dismal heart.

I got up and the crack-of-dawn o’clock and hopped in the shower.  I got the girls dressed (In-Laws were sick so the 1 child at a time ruling had to be abandoned), fed and in the car.  Along the way I stopped and used my gift card from the Moms Marbles twitter party last month (thanks, ladies I loved my mocha!!) at Starbucks and we headed up to the North Side of the city.  We arrived perfectly on time and headed back for Riley’s appointment at the exact time we were supposed to be in.

And we waited.  and waited. and waited.  30 minutes later the nurse popped in to tell us the doctor had gone to the wrong office. So we waited another 30 minutes and the doctor showed up.

It was worth the wait.  It was worth the 4 months it took to get into her office to even see her.  It was worth the hour wait.  Why?

For an hour and a half – a FULL 90 minutes – she sat in that room.  She never left. She sat there.  She listened.  She talked.  She HEARD me. After years of frustration and fears…to be HEARD…that is the most joyous part of it.

She looked over Riley – took a full history asked many many questions – questions not even I could remember the answers to.

We have confirmations, we have suggestions…we are feeling hope.

I go back on Monday with Angel.  At that point the doctor will give me a list of items from today’s visit where she’ll write down EVERYTHING we discussed today.  Suggestions for therapies, help for insurance/assistance, suggestions and numbers for groups not just to support Riley (and Angel when it’s her turn) – but to help US cope.  The adults. 

Do we now have all the answers?  Heavens, no.  But this doctor is helping us define a path.  For each girl, individually.  She is listening to us. 

And that…that is the most wonderful thing in the world.

Yesterday we covered Riley’s relatively normal pregnancy and childbirth.  As I said then; for the first three months everything went smooth – except that she had to sleep propped up in her carseat.  She would not sleep lying down at all.  Ever.

At three months old, I went back to work.  I took a part time evening job waitressing at Bob Evans.  The first week of work, things got crazy at home.  I would leave and Riley would scream all night until almost 10PM.  This was beyond colic, this was intense, pained screaming.  Archie blamed it on my return to work the first couple of nights…but then he told me something was wrong.

Archie’s instincts have a way of being right.  So, when I had to leave work early (in my first week) to come home because she was so horribly bad off, we determined that we’d call the pediatrician.  We were told that if it didn’t improve to make a sick appointment in the morning (it was a Saturday). 

The next morning we called and made the sick appointment, not wanting to wait until Monday.  We took her in and learned that she’d flatlined in her weight gain.  In the month since her previous appointment she’d only gained about 3oz. 

Listening to our descriptions of what was happening the ped suggested that it was likely GERD (reflux), and perscribed Zantac.  He told us to try giving her some formula after breastfeeding  to weigh down what she was eating (a directive I regret following…but that’s another story).  Then he scheduled some tests for us to get a confirmation of the diagnosis.

The next week we were at the children’s hospital with her in the X-ray department having a fluoroscopy performed.  I was standing there watching as she swallowed the barium right up.  I watched it go down, and stared in shock when it shot back up VERY quick, stopping at her throat before going back down and shooting back up again.

Our diagnosis of silent reflux confirmed, we followed another of the doctor’s directives that I regret….adding cereal to the formula we gave her. 

Over the next few weeks she went in for weight checks constantly, but her weight gain didn’t rebound.  So, under my (supposedly) BF supportive docs suggestion I pumped and switched exclusively to formula w/ cereal added.  He said that we would get back to BFing once her weight came back on an even keel.

But the weight never came back, and neither did the breast feeding.  Despite the treatments for GERD working in other ways (she would lay down to sleep, the screaming stopped)…her weight couldn’t seem to come back where it was supposed to be.

Eventually it got to the point where her weight was in the -25%.  She was at least a pound beneath the lowest line on the growth charts, and we had no idea what to do about it, where to go next.   She was one year old and weighed 15lbs to her 29inches.  She was a beanpole – skin and bones. Her hair was thin and practically non-existent.

It was around this time that we ended up switching pediatricians for many reasons.  With the new pediatrician came a new look into the weight issues Riley was having.  A pair of fresh eyes that would help us try to find an answer.

In came Dr. S.  She has been our joy, our savior, and just the best damn pediatrician ever.  She started the two year search for answers…

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I’ll continue on Monday with the first stage of our search…from bloodwork, to the specialist and our introduction to Early Intervention!

When my blog was closed for a couple of weeks I received an email from a new visitor.  Her daughter was FTT and they were looking at a possible RSS diagnosis, among every other measure being taken.  She asked me for our story and shared hers.  Since her last email I’ve been busy and my brain still isn’t functioning so I hadn’t gotten back to her yet…but I thought I’d start to try to answer her question here.  Starting at the beginning of our special needs journey that we’ve gone through with Riley.  From the beginning…

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For the most part, my pregnancy with Riley went smoothly.  I had minor issues with morning sickness (hello Saltines!), and some major skin issues (hello ringworm, dry skin, and excema!).  Otherwise, things went well.  She, and I, grew normally until around 20 weeks.  That was the first time the ‘huh‘ factor came into play.  I started measuring just a little small. 

It wasn’t a panic inducing moment by any means, just a ‘huh‘ and a ‘we’ll monitor it’.  My doctor loved excuses for extra ultrasounds (he likes to keep Mama’s happy by letting them see their babies), and he guessed that the small measurements may produce cause for a third trimester ultrasound. 

As the weeks progressed I continued to measure small, and so I received another ultrasound at about 32 weeks.  The ultrasound determined that Riley was small, too.  Not a whole lot, but a week or two behind.  Still not reason for panic, but reason for monitoring.

For my 36 week checkup I received another brief ultrasound.  Riley was growing, but was still showing behind.  My OB told me to keep drinking plenty of fluids and he’d check us again in a couple of weeks.

At 38 weeks I was already 2 cm dilated, and my measurements were still small.  A final ultrasound revealed that in the previous two weeks, Riley hadn’t grown at all.  She still looked healthy, but now looked about 4 weeks behind. 

My (wonderful!) OB looked between Archie and I and said, “Well, we have a diagnosis of IUGR, probable low birth weight.  It’s a medical reason to induce, would you like to go now?!” 

It took one look and two seconds for Archie and I to say, “YES!!”  We drove home from the doctors making calls, picked up our bags and drove the three minutes from our house to the hospital.  Idiot me didn’t eat before we went in…but that’s a different story.

I was hooked up to the IV and monitors, where it was discovered I was contracting.  At three minute intervals!  I had no idea.  They started the pitocin, and within half an hour I DID know I was contracting. 

Long story short, eight hours later Riley pushed herself out (yes, you read that right, I didn’t push…AT.ALL), and came out blue with a nuchal chord (around her shoulder).  Luckily, she immediately started screaming and pinking up, but the nurses scooped her up and took her away anyway…there was no instant holding. 

She was born 6lbs 7oz.  She was long and skinny, with a popeye effect…but she was beautiful and fair.  She took to breastfeeding like a champ and was released from the hospital in the normal amount of time.

The first three months were wonderful.  She was small, but grew on the curve.  She fed constantly, but would not sleep lying down.  It was our first hint of trouble, but we didn’t realize it.  I just let her sleep in her carseat.  It propped her up at the right angle and she was too small to roll out. 

The first three months were magical…she’d fall asleep in my arms, she was tiny and cuddly and totally lovable.  We didn’t know what a hectic world and stressful life we were about to embark on…we just saw oru beautiful fair princess staring back at us…

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For sake of length and sanity, this is to be continued   Tomorrow, I think.