by Sarah | Aug 20, 2009 | All About Kennedy, All About Me, All About Molly, Crap, Cystic Fibrosis
I spent the better part of the weekend (from Thursday to Sunday) sleeping. I was sick, sick, sick…and have just now started feeling better. The worst part of being sick was having two sickies with me (*thing 1 and thing 2*) that were just as miserable as I was.
Riley recovered fast, but it clung to my Angel like glue. The cough lingered and she was put on antibiotics (drugs…woohoo). She recovered a bit, but continued to cough. And cough. And cough – waking up at nights. It wasn’t continuous – just lingering. So, as luck would have it we had our regularly scheduled visit to the CF clinic yesterday. Her lung functions have gone down, so the pulm has extended and increased her antibiotics….and added steroids.
So after all of this, I’m finally back. Still keeping an eye on my baby – but I’m here! Sorry I was so MIA. Whateer this summer cold was made of, it kicked my ass!
And the Rock and Roll?
Well, it’s RIGHT HERE!!
by Sarah | Aug 14, 2009 | All About Erik, All About Molly, Autism, Fatherhood Fridays
See Part 1 by clicking HERE
I never knew or met anyone who looked like me. Someone who shared certain traits. The connection was so amazing. I could look into her eyes and see myself, no longer alone. She was very special to me, in a way that most people would find hard to understand. I found redemption for past failures and a bright future was suddenly ahead of me.
Around 3-4 months old, Riley started crying after she ate. At first, we just thought it was indigestion, it would pass. But it didn’t. The crying soon turned into screaming, her muscles were tensed, and she was unable to be soothed.
A trip to the doctor soon turned into multiple trips, with fluoroscopes, tests, poking and prodding at my/our little girl. We were told that it was a simple diagnosis, silent acid reflux and it could be corrected easily with medication and close monitoring. That was okay, but she suffered for around three months in terrible pain and anguish, unable eat without it hurting her.
As she was getting better and able to eat without painful consequences, I started to notice that she was just not….right. She was now very quiet, withdrawn, never smiled, and physically she was wasted. Her doctor appointments were indicating no weight or height gains, even having lost weight at times. Her hair was lifeless and dull, eyes were glassy most of the time, and her only method of communication was crying in distress. She was drawing herself into a shell that neither my wife nor I could penetrate.
All of this time I was in complete panic mode. I finally had what I had been needing all of my life and she was slowly, painfully wasting away. Babies are supposed to be chubby and full, but she was bones and flesh. My wife and I supported each other as best we could, but I anguished terribly inside. I wondered if I didn’t get help for her soon enough, or if I failed to see the signs and in turn failed her.
I can’t explain how it feels to be so alone in the world, not really connected to anything. How many people take for granted that they have mother’s eyes, their fathers’ hands, that little half smile that started at the corner of their mouth just like their grandfathers in their youth. I had none of those things until Riley was born. Now I was in danger of losing that. Many sleepless nights, staring at the wall. What was to become of her, and me?
I know how selfish it sounds that my happiness was linked to hers, but that’s the way it was. For a while, we didn’t really know for sure that she was gonna make it. We met with other doctors, and then a geneticist. The geneticist was really able to help us with our fears and concerns. We didn’t like all of the answers, but he was honest and straightforward.
We bulked up her milk rations and worked constantly to improve her state of mind. One of her issues was revealed to be an oral aversion. She didn’t want food, she wouldn’t talk, and she would not let anyone look at her teeth which by this time were causing her some discomfort as they do all babies. But she never showed us or told us if something hurt, if she was happy, if she didn’t like something, nada. Zip. Nothing. The scariest for me part was not knowing if she was really in there or if she was gone forever. She looked like a little zombie most days. My heart ached and weighed three tons.
After several months, the added nutrients began to work, her hair started growing again, and had shine & luster to it. Her little body started to fill in just a bit, she would still be a skinny child given her parents, but we were okay with that. Anything but the bones that cast shadows. She was still withdrawn most of the time, but we began to see signs of life. She began to show interest in things outside of herself.
She could complete ten of the wooden type puzzles with letters, numbers, and shapes, at one time.
Amazing.
She didn’t so much play with her toys as she did organize them with razor sharp straightness. She walked at just under a year, which we felt was pretty good considering her delays. She walked on her tiptoes a lot, my wife thought she would become a dancer. She became frightened at loud sounds like motorcycles, hot rod cars, loud bangs or crashes, and would often cover her ears. She did like for the tv to be louder, so it basically drowned out other noise. It was difficult to get her attention; sometimes it seemed as if she were somewhere else. But we were slowly getting her back. I thanked whatever higher power that heard our pleas. I also began to relax, uncoil, and enjoy her.
****
I am very grateful today is Fatherhood Friday and that Archie had stepped up with a post because I’m sick as a dog, and so are the girls. I will try to be back tomorrow – if not in time for my Weekly Winners – but there are no guarantees. I feel like death, just ask Archie.
by Sarah | Jul 16, 2009 | Hypotonia, Terminology
Today in email I was asked by a mom with a new diagnosis of Truncal Hypotonia to explain it in layman’s terms for her. She’s new to all of this and is frightened – and I remember that feeling well. It’s been ages since I did a Terminology Tuesday, and today is not Tuesday, but I thought it would make a great post, since I display clearly on my site that Angel has this and what it is may not be clear. I’ve already answered this directly to that mom in email, but I’m making a post now too 😀
Hypotonia is a muscular condition. It means that the muscles do not have the tone of normal muscles – they aren’t as strong or flexible. This is often characterized by a rigidity. In our case, even changing a diaper caused discomfort for Angel. She had Torticollis (definition on Tues.) as a baby, then her arms were stuck in the airplane reflex (arms raised tight and bent at her sides) until we finally got her crawling – and even then we could not get her to use her left arm to reach for anything.
Truncal means the torso. The hips/stomach/chest area is the weakest. The trunk supports us in just about everything from sitting to moving and walking. Angel’s hips and chest are her weakest area, most especially on the left side.
I hope this helps! I’m off to research another disorder to gain an understanding of it before I email this mom back!!
*~*
by Sarah | May 8, 2009 | All About Molly, Autism
When Riley was very young she had a wonderful tendency toward needing to be held constantly. If you were holding her she was so content. She smiled brightly for you and coo’d…but only in your arms. If you tried to lay her down it was all over.
Then at four months old when the horrors of GERD (reflux) reared their heads we started to lose that spark. Our little sweet pea withdrew into a shell of near constant pain and shrieking. The smiles lessened, the coos faded…and by the time the GERD was treated and peace was restored, it was like we’d lost that spark that had lit from within her beautiful blue eyes.
Over time she grew and changed, but she was always withdrawn. Removed from the present. In her own world. At times it concerned us, terrified us…but we learned to accept it and cope with it.
Brief moments of sunshine and brilliance would break through the crowds. Her brilliance at puzzles when she was a year. Her love of the Backyardigans. Her quick learning of letters and numbers. She astonished us.
She worried us.
The autism diagnosis confirmed our fears, and brought new ones. But all along, we knew that the sunshine was in there. We knew that she had parents that understood as best as they could. A dad that had grown up with similar issues and fears – and we’d make sure she knew that we would always try our best to understand and accept.
Lately – Riley has been letting out more and more of that sunshine. Her closed off and withdrawn nature has been becoming more of a side part of her nature. In its place is a bright, sunny girl that is just brimming with personality.
When she gets mad or wounded or upset she still pulls back…and we accept them as part of who she is and help her learn to cope with them.
But when she is not mad…she laughs and giggles. She bosses her sister around. She bosses me around, the dog, her brother…her Daddy…anyone within hearing range.
She asks questions and gives answers. She has learned the art of conversation – and while not always witty – it is always sparkling with her smile and bright blue eyes.
Does she talk as much as a normal 4 year old? No…we haven’t reached that level yet – but she’s so much more than she was a year ago.Â
She’s amazing. She’s brilliant. She’s adorable. She’s my princess.
And I’m so thrilled to see the sunshine again.
by Sarah | Apr 24, 2009 | All About Kennedy, All About Molly, SID
With SID you have two camps – the sensory AVOIDERS…and the sensory SEEKERS.
I have two SID girls – one Avoider (Riley) and one Seeker (Angel).
Up until a year ago I was certain that having the Avoider was the “Worst” of the two. Social situations, eating, playtime were all such challenges. Planes flying overhead were a nightmare for weeks, trucks driving by.Â
Coping mechanisms were learned and slowly with time it became less of an issue.
Then we had our Seeker. I thought it was tough to handle when part of her seeking techniques were ramming her head into everything. Screaming at the top of her lungs. Throwing everything. Breaking everything.
But as much as we’ve been able to curb (some) of these events – in the past year we’ve had the occasion to experience the worst of the SID habits.
Smearing poop.
Poop on the walls, the beds, the clothes…IN HER MOUTH. It makes me wonder for her intelligence (sometimes when I’m most stressed) – and my sanity. It is one thing that I can seriously get truly and horrifically upset and disgusted for….
And it’s one thing that I haven’t the foggiest idea how to stop. The taste obviously doesn’t put her off. The smell. The feel. None of it.Â
I’ve found out through research and searching that this isn’t uncommon – but is ALWAYS stressful for the parents. I also see posts of some children doing it even after potty training, and beyond.Â
So for now I sit and research coping mechanisms again…although this time, I search for coping mechanisms for myself and my husband. I don’t think either of us look good bald.
by Sarah | Mar 17, 2009 | All About Kennedy, Cystic Fibrosis
(Part 1 is here)(Part 2 is here)
****
“Cystic Fibrosis.”
The pulmonologist – one of the top in her field – had said it. In relation to our tiny little baby girl. I’d never known what it was like to nearly faint – until that moment. I managed to hold it together, even though Archie was watching me with fear and concern.
I clutched the phone tightly as Dr. A explained that she had left instructions to get us in the following week so that she could explain to us better what CF meant. She reiterated again to not panic and emphatically said “Do NOT research online. Many sites will give you the worst case stories in an effort to raise money.” She explained that Angel’s numbers were in the mid range for a very low amount of sweat – so we couldn’t be 100% sure yet.Â
We would rerun the sweat test. We would have a blood draw for genetic screening. I didn’t want to listen anymore, but I had to so I could repeat it all for Archie.
We went back to the hospital a few days later, still numb and confused. We met with the pulmonologist.
She said that Angel’s first test had had very little sweat on it. But that “safe” numbers for CF were 0-40. Mid line (in the CF range but very low) were 40-60, and surefire was 60-100. That Angel’s numbers had been 62. That 100 was usually the results she saw with a positive result.Â
She explained with reassuring tones that CF wasn’t the death sentence it once was – that many people today live long lives with CF. That every case is different – that she just started treating a 45 year old woman who only learned she had it because her daughter was diagnosed.
All the reassurances couldn’t stop the sickening beat my heart had pulsed since she’d first said Cystic Fibrosis. She answered all of our questions through my numb haze I can’t remember any of it…but told us to call any time we had any questions at all.
We went for the tests and were told that it didn’t seem that she’d sweat enough for the test to work, but they’d try to run it anyway.
It didn’t work – Angel does not sweat well.
It took two months and five more sweat tests to make the child sweat enough to run a second test.Â
In the mean time the x-rays came back clean. The genetic screen (which only screens the 80 most common genetic indicators of CF – there’s like 190+) came back clean. Her weight continued to be low, her cough faded away into the night. But still we waited and wrung our hands.
Archie moved back in and we worried together after we put her in bed each night. Our family repaired itself, but our baby still hovered in the unknown.
Finally after 7 sweat tests we got enough sweat to test again. Again the numbers came back elevated – but still on the low side. Dr. A consulted with another doctor and then said that they had to call it…it was Cystic Fibrosis.
In June 2 years ago we went into the hospital for a day long marathon of tests. More x-rays and blood work. A lung function test (which is FUN for a baby that reacts poorly – or not at all – to knock out drugs). A sputum culture – a day in the CF clinic.
Since then we’ve been blessed with the good fortune of Angel being relatively healthy. After a year of CF we were told that her lungs were ‘starting to look more CF’. But we’ve still had a peaceful time.
At the time of her diagnosis, the pulmonologist said “At her age you are more likely to have problems from her other issues like the hypotonia than you are from the CF.” So far she’s been correct. We only hope that it remains that way for a LONG time.
