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. Read more »
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. Read more »
by Sarah CassMulti-published author. Mom of 3 special needs kids. Wife to 1 good man.
Redefining Perfect every day.
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. Read more »