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.

Okay, so I’d never ACTUALLY call my daughter that…or maybe I would…but I’m digressing.

I’m so very not used to this. Denver was (forgive me for saying) the “perfect” child. He never had terrible twos, three’s, or any age. He acts up at the start of every school year…otherwise he’s a great kid. As a child temper tantrums were VERY rare…I never feared going out in public.

Molly is silent 90% of the time. When she was a baby the overstimulation would send her screaming if we went to a restaurant…but mostly I don’t have to worry about her freaking otu in public anymore. She acts incredibly shy. And now, since she’s started preschool a new social side is coming out around people she’s familiar with.

Kennedy. Well, she’s my little B-…snot-nosed brat. And yes, I DO mean snot-nosed.

Yesterday I tried to go shopping. Little One decided she didn’t want to go shopping…much less in Old Navy. Threw a SCREAMING fit. I had her in one of those carts they have…she kept THROWING herself back into the hard plastic seat. Joy.

We left Old Navy, went to The Children’s Place (I have a thing with Children’s place I’ll have to post later)…no carts there, so she threw herself on the floor. MARVELOUS.

Today was PT. She REFUSED to do anything PT…period. Threw huge big screaming hissy fits. Threw herself on the ground. On the couch. Threw toys. Screamed. Threw her head into me.

We finally got her to do some OT activities amid screaming fits. As the therapist was writing her notes, I gave K a little backrub…she had knots from head to toe. After that…guess what? The PT started cleaning up…and K started doing PT activities!!! She was climbing the steps the PT brought.

Yeah. The Little B-…er, Little One decided NOW was a good time…

Snot nosed little brat.

Figures…with three kids I had to expect ONE of them to be a punk.

I have so many posts to make and so little time/space to do it. I feel like if I post everything I’ll overrun all of you with posts. I think there will seriously be 3 posts today on different subjects. If it’s too much, tell me. I’ll try to narrow posts down on upcoming days! (I’ve been trying in the past, but it’s tough some days!!) Anyway…onto the doctor’s appointment…

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We took K to the Orthopedist. This was on the reccommendation of our Physical Therapist. Currently K is receiving PT for hyoptonia among other issues. She wanted us to go see an Ortho just to make sure that she didn’t need further “Assistance” in overcoming the issues she’s having. (She walks like a chimpanzee, her foot turns in, her left leg is 1/4″ shorter…)

I must say that it was the shortest, most concise appointment I have ever been to out of ANY specialist that I’ve seen. There was no weight taken. No height measurement. We were taken to a room. Five minutes later the doctor came in shook our hands (PAINFULLY strong grip, BTW), and asked us what was going on. He looked over her feet and her legs, asked us to have her walk a bit for him.

After a 5-10 minute appointment he basically said nothing needed to be done. He even came close to saying that PT wasn’t required (HUH?). He said she had Tibial Torsion, and explained how she was compensating for it. He said she’d “probably” outgrow it by the time she was four. If she didn’t outgrow it by then, we’d have to take measures. He also said he believed she’d outgrow her hypotonia.

We can only hope at this point. We were in and out of the appointment in an hour. And while I felt secure that he was knowledgable, I just am not as optomistic after it as I thought I’d be. I still have a gut feeling that her issue goes beyond simple Tibial Torsion…Her hypotonia is truly what worries me…the concern that she won’t ever learn to do things the “right” way…and will spend her whole life compensating. But apparently at this age it’s yet ANOTHER waiting game…wait until she’s four and THEN worry…

Um, no…I’ll worry now, thanks.

*Operation Santa – Stage 1 is complete. If I may say so myself, it was a success! In order to prepare Molly for pictures with Santa, I took her and the other kids today to the Santa’s Snowglobe nearby. We played in the ‘waiting room’ part for a while…crept our way closer to where Santa was. Finally got close. Every time I said Santa Molly would look up at him and smile. She wouldn’t get too close, but we got within a couple of feet. We’ll go again tomorrow. Next week when it’s picture time I may have to have her on my lap, but I think we’ll get close.

*DH’s Christmas List – I’ve asked him to make me a Christmas list because we are actually getting gifts for each other this year. Among those things on his list is…Vomit Bags (he finds the word vomit funny), a 2007 Dodge Charger w/ Hemi engine (yeah, that’ll happen), and sex. Hmmm…maybe I SHOULD get him the Charger *giggle*

*Christmas Cookies – I just may go overboard this year…I printed out quite a few recipes last night…but I still don’t feel I’ve found THE recipe yet. Maybe THAT will be my contest!!

*Shoe Obsession – IT’s gotten worse. I can’t even take off her shoes to change her diaper. If she were potty trained this wouldn’t be an issue…but…um…WTH do I do now?

*ON THE CHARTS!! – Molly and K had their nutritionist appts today! For the first time since she was 8 months old Molly is back on the charts for weight!! She’s only in the 4th%ile…but she’s on the charts!! She didn’t grow in heighth at ALL this time (very strange for her), but her height to weight ratio is still off…but who cares…she’s ON THE CHARTS!!

*A break from PT is NOT allowed – ever again!! Due to illness and Thanksgiving it’s been almost a month since K’s last PT appointment…and let’s just say that today was NOT successful. We aren’t doing THAT again *headdesk*

Overall a good day, despite the crazy way it started!!

Right now while K is sick, this is my life. 3 times a day, 30 minutes a piece – plus 5-10 minutes on the nebulizer (I do not have that on video because I have to pin her down on my lap to do it properly) twice a day.

If you listen closely, you can hear her letting her voice vibrate with it (I know it’s tough over the sound of the machine).

And for an update on her being sick. The pulmonologist put her on antibiotics as a ‘precautionary’ measure. We started them this morning, but we started them too late – she spiked a fever tonight. She’s miserable…red nosed, red-eyes that are tearing, sneezing, coughing, and vomiting…it’s breaking my heart. Her first real illness since the diagnosis, and every cough just makes me tear up.

Will I get ‘used to’ this?

We have cancelled our entire week this week! This is what my week was supposed to look like (the blue indicates rescheduled, red indicates canceled):

Monday – M Preschool 12-3:30
Meet DH with K and have lunch
Tuesday – M Flu Shot 9:10AM
K Speech Therapy 1:00
Wednesday – M Preschool 12-3:30
Me Chiropractor 11:45
K Pulmonologist 2:30
Thursday – K Physical Therapy 12:30
K Speech Therapy 1:30
M Nutritionist 2:00
Friday – M Flu Shot 9:10AM (may still be rescheduled)

The only thing NOT cancelled due to illness was Molly’s preschool on Wednesday. I cancelled that because of the doctor’s appointments that I ended up cancelling. Good thing this was a mild week.

One thing I am is a huge supporter of Early Intervention (EI). With EI your child can get all the help he or she needs NOW, and in many cases, free. If your child has a significant delay in one area, a little help now can mean a LOT for their future. If it weren’t for EI, Molly wouldn’t be making the progress she is now…she probably would not be considered high-functioning at all. K might not be walking without the exercises we’ve learned, and her weekly PT sessions.

That being said…one of my biggest pet peeves is people who worry about their child’s development, but then sit back and do nothing. The easiest thing you can EVER do is say to your pediatrician, “Hey…I’m a little concerned, can we call EI and have an evaluation?” The WORST that will happen? EI will say, “He/She needs therapy.” You don’t HAVE to do it, but it’s there and available IN YOUR HOME, or IN THEIR DAYCARE!!!! WOW! The best thing that could happen is the (experienced, mind you) therapists will say, “She/He seems to be developing normally…”

So what is the HARM in just checking if you ARE concerned?!?!?! Instead of sitting there fretting…waiting for soothing words from friends and family…Take the step and get an eval!!! It’s painless, your child gets to play while you answer a couple hundred questions…then the therapists play with your kid!! You can always REFUSE therapy if you want!! But at worst, it will be suggested..at best your mind will be put at ease!!

So get off your butt and ask your ped if you’re concerned…don’t lament delays if you aren’t going to do a damn thing about it!

Seeing all the toys the therapists bring always makes me curious on appropriate play and toys for the girls. So, about once a week I go perusing websites that have sensory play based toys. Usually the equipment is crazy expensive, but sometimes you see some items within reasonable reach. I really go primarily for the ideas. Many common Sensory play items can be recreated. Some basic ideas I’ve come up with….

Tactile play is easy. Set out four bowls. Place four different textures in each. Rice, rotini pasta, sugar/salt, and (this can be messy) jelly. Four varying textures to explore. Rice or beans and rotini pasta are really great for opening the senses.

Get brushes of varying textures/bristle strength, and let your child explore those – but this is something to take slow.

Fabric has wonderful varieties of textures. Satin, wool, felt, cotton…all varying. Make a bin full of different fabrics and let your child explore each one.

Remember feet are as important. Let your child walk barefoot over different textures. Get washtubs and fill them with different outdoor textures…sand, pebbles (smooth is probably better here), mud, a patch of grass, a concrete block, smooth sanded wood. Let their feet get the sensations that their hands do.

Visit some sensory play sites, get some ideas there…you never know what ideas might come! I’ll be posting more ideas as I get them as well. For things from physical therapy to more sensory play, to oral motor play.

Some sensory play sites:
http://www.flaghouse.com/default.asp?Category=Sensory%20Solutions
http://www.beyondplay.com/index.htm
http://www.integrationscatalog.com/index.jsp