by Sarah | Jun 1, 2010 | All About Kennedy, Cystic Fibrosis
Three years ago we got the diagnosis, Cystic Fibrosis. The pulmonologist assured us that over the course of the next few years we were likely to have more difficulty from Angel’s “other issues” than we were from the CF.
She was right.
For three years we’ve avoided any serious medical ailments from her CF. One bout of croup is the worst we have suffered.
For three years it’s been a diagnosis. Nothing more.
Now it’s a reality.
On my last day in Buffalo the real world invaded. The pulmonologist called my cell phone. We had been in the week before for Angel’s yearly testing. Blood work was drawn, lung functions done, and a sputum culture.
The results of the sputum culture had come back. For the first time ever, Angel tested positive for Pseudomonas. We were already on Cipro (her lung functions have been on a steady decline & she’s been having some labored breathing)…we had TOBI added on (a $3000 drug, pre-insurance! *faints*), which is an actual inhaled antibiotic.
My baby is sick.
She runs and plays. She laughs and sings. But her body is slowing her down.
At night she rasps and wheezes. She’s now chained to her machines for an hour each morning and evening. Trying to fight this off so that she can run and play without getting so worn down so fast.
We let her run.
We let her play.
She needs it. WE need it.
Our baby is sick.
It’s no longer something that’s in the background. It’s staring us in the face and gnashing it’s teeth.
I’d come out fighting, but I’m worn down too. So instead I fight quietly. I pray to find my strength again so that I can be strong for her, for my family. Life has tossed me about lately, the phone call from the pulm was the last in a string of crapstorms swirling about me.
But then I see her face. Those huge brown eyes that have melted my heart from day 1.
That smile that manipulates my anger into a grin, even when I don’t want it to. The goofy playfulness that can turn the grumpiest grump into a grinning fool.
I know that she’s too little to know what her tiny body is trying to fight off. I know that she’d rather run and play then sit hooked up to machines and fed medicines. I know that it all makes her sad.
And that’s when I know. I’d give anything to keep that smile. That goofy grin. The annoying repeating chatter that fills my days (and sometimes my nights). The songs she makes up. The piercing shriek of a scream she emits that makes my ears bleed, but show that her fire is not gone out.
I will find my strength to fight this thing. The Mama Bear will emerge, and we will fight the now present danger of CF.
Diagnosis has become reality.
Now we brace ourselves for the fight. We will fight for every tomorrow we can get. Angel may be tiny – but she’s got a strength and joy inside unlike anything you’ve seen.
I believe that if anyone can win the battle against this disease it’s her.
And if my littlest, my tiny Angel-girl is strong enough – I sure as hell can be too.
by Sarah | Apr 2, 2010 | All About Molly, Autism
Today is “Autism Awareness Day.”
For some reason as I heard the words in my head this morning I immediately became amused. I understand that it’s about spreading awareness of autism, but I could only laugh and think But I’m aware of it EVERY day.
This is our face of autism. Those gorgeous ice blue eyes. The smile that has found its way to her face somehow. The personality that is starting to grow.
Most would call us blessed, and we agree. Riley’s form of autism is mild enough that she will likely lead a “normal” life. A job, a family, all that a parent imagines for their child. That doesn’t mean she won’t struggle. That every day one quirk or another won’t rear its head to impede what would normally be an easy step into a careful shuffle of feet.
The little reminders that pop up.
The way she organizes her M&M’s by colors in a snakelike form before eating.
The way she delicately nibbles, trying not to let the grease or crumbs of food touch her lips or outside of her mouth.
The way we cannot break our established program or routine without a meltdown.
The way her hugs are strong but brief, no linger touches or snuggles.
The way you see her mind processing and learning everything she cannot express verbally.
Leaps and bounds of progress have shaped our winter, a sparkling personality is emerging from behind the walls. With those she trusts she is bubbling and bright, even bossy…but the meltdowns still linger.
We are blessed.
All parents are blessed.
I hope today your awareness expands, but shouldn’t it every day?
by Sarah | Nov 11, 2009 | All About Kennedy, Cystic Fibrosis, Failure to Thrive (FTT), Hypotonia, SID, Speech, Therapy
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.
by Sarah | Nov 4, 2009 | All About Molly, Autism, Failure to Thrive (FTT), Russell-Silver Syndrome, SID, Therapy
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.
by Sarah | Oct 24, 2009 | All About Molly, Autism
Riley has never been one for communication. She didn’t speak her first word until she was almost 2. Years of Speech Therapy have yielded a capability to say words and even full sentences. But actual communication? It’s a struggle and you’re never sure that she’s even actually being truthful – or just agreeing to get the conversation over.
When it is time to have a serious conversation with her, it’s like she instinctively gets the ‘confrontation’ vibe (even if not in trouble) and she shuts down. I wonder sometimes if we don’t need to resort to a complex series of clicks, whistles, and hand gestures to communicate with her.
The other night we had to have one of those. We wanted to talk about something – but to actually get her real input on it. We attempted a few formulas and eventually got a semblance of a conversation – consisting mostly of nods and yes’s or no’s from the Riley-girl – but a conversation.
We started by making sure she felt ‘safe’…sitting by Daddy w/ Mommy across the room – and sissy in bed. Daddy talking to her without looking directly at her. Occasionally I would ask a question in a different way.
A few words later, several head nods later…the conversation was over with Mommy having joined them on the couch and a snuggle session in full force. We were soon tackled by a little tornado of a monkey and all was righ twith the world again.
Have I mentioned how jealous I get going to blogs and seeing 2 & 3 year olds having true conversations and clever comments posted? Brandon was like that 10 years ago…now my girls are almost 4&5 and I still don’t have it with them…although Angel is getting closer than Riley (but Angel is pure goof-ball *G*).
But with baby-steps…eventually I’ll be having conversations with my daughter so brilliant that it will be ME not able to keep up…and I’ll be mystified that it was ever such a struggle to converse. At least, that is the dream.
by Sarah | Aug 28, 2009 | All About Erik, All About Molly, Autism, Fatherhood Fridays
The things we take for granted in our lives is amazing. We forget to stop and see the small miracles that occur every day, we just look for the big ones. I’m guilty of that when it comes to Riley. I thought she would grow and advance just like every other child. I didn’t want for her to have the problems I had to go through.
We went to the geneticist for over a year before we got a diagnosis. He wanted to observe her and watch how she grew before he said anything definitive.
After so many visits he was finally ready to tell us. The diagnosis was autism, specifically pervasive developmental disorder (PDD-NOS). My wife and I were stunned. It didn’t change how much we loved her, looked at her, or treated her – but I felt responsible. I was the one with all the problems growing up, and the lingering ones as an adult. My wife had a typical childhood, no major problems to speak of. Her first child was neurotypical. No, if Riley was ill, it was because of me and my blasted genetics.
Riley was still not talking, or smiling much. But she was playing “outside” of herself. Any situation where a lot of people were involved made her extremely uncomfortable, often resulting in a “meltdown” as we called them. She did not like for anyone to initiate touching or hold her unless it was herself. We saw a little girl locked inside herself, and we had to find the keys.
As Molly grew, we were enrolled in an assistance program that helped us find and meet her special needs. She met with various therapists each week to help her reach goals that were set forth to bring her development up to speed. She also was able to attend a special needs pre-pre-school , which she started out very withdrawn, but ended up comfortable and playing/learning/chatting with the other kids and teachers. My Riley was coming around, and I couldn’t have been prouder.
Riley began to talk, she had been saying some words, but now she was really talking. It was very difficult to understand her sometimes, at least for me. My wife spent all day with her and it was easier for her to pick up Riley’s speech. But she was improving. Her weight was always on the low side, but her height was average to tall. Her was growing, and it was long platinum blonde with curls at the end. Her hair was very fine, but it was healthy. Her appetite was increasing, but there were certain things she would not touch, probably due to texture or feel. She would give quick hugs, and sometimes we could kiss her. She was improving all the time, making big and small leaps in progress.
Today Riley is a little personality. She is still withdrawn and still has her “quirks” – but daily she reminds us of how far she’s come – and how much farther she is destined to go. I still struggle with what I’ve done right, or wrong – and with my own self-blame…but nothing cheers me like a hug and a kiss from my own mini-me. My Alligator. My Riley.
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I apologize for the delay in the latest installment from Archie!! I kept forgetting to edit it. This was the final installment in the ‘Real Men Don’t Cry’ Portion. I’m hoping to keep nudging the hubs to make posts on a variety of subjects – because I know he has a lot more to say! So Fatherhood Fridays are far from over!!
Three years ago we got the diagnosis, Cystic Fibrosis. The pulmonologist assured us that over the course of the next few years we were likely to have more difficulty from Angel’s “other issues” than we were from the CF.
