My Child's Story

OK, I found this blog carnival at In The Life of a Child, and decided to join in. However, I have 3 kids with Spec Needs, So I will write a brief overview of each, rather than a comprehensive post on one.

Bert (aka Alex) was my second child, but he introduced me to the world of Special Needs. After an emergency C-section because somehow he no longer found my womb compatible with life, Bert came into this world gentle as a lamb. His first cry was when he was 3 weeks old, I'll never forget it. Beaner stepped on his hand while he was basking in a sunny spot in the living room. I was thrilled, he cried! Bert was born with a little bonus in the 21st chromosome. Most people associate this condition, called Down syndrome, with mental retardation and the obvious facial differences that those especially blessed kiddos carry. I, instead associate this with an incredible ability to live in, and enjoy the present moment, a delight in this world, and an especially large heart.

When Bert was <2, the Chief left to check on his sister, who was in heroin withdrawal, and came home with our Rockstar (Chels). She was 13-1/2, but the size of a rather small 10 year old. She had long, scraggly hair, was pale and drawn, with haunted eyes. At the time I had no idea that she would become my daughter, but through time and experiences, she is. Her mother passes away nearly 3 years ago, leaving me to parent an orphaned teenager. Rockstar has since been diagnosed with PTSD, bipolar, and RAD. There were times in parenting her that I had resigned myself to believe that she may never be a productive citizen, that if helping her find Jesus was all I did for her, that would be enough. I am thrilled to say that by the power of the Holy Spirit, she has found Jesus, and much more. She is living abudantly, and though she doesn't always make great choices, she is learning and growing, and has blessed our family beyond measure.

The last child to enter our family is Schmoozer (Ben). In early 2006 we submitted our information to Robin Steele of the Adoption Awareness program, hoping to adopt a second child with Down syndrome. Within 3 weeks we got a call, matching us to Schmoozer's natural parents. After waiting 3-1/2 months for research and decisions to be made, and for paperwork to clear, we brought Schmoozer home from the District of Columbia. Within days, we realized 2 things: 1. that he didn't poop right at all and 2. that he didn't hear right at all. As time has gone by, we found that not only does Schmoozer have DS, but is also moderately to moderately severely hearing impaired, he has Hirschsprung's disease, he has hypothyroidism, and to top it off, he has Cyclical Vomitting Syndrome. Talk about getting more than you bargained for! Schmoozer has filled, not only our hands, but also our hearts, to capacity. Through 8 hospital admissions and more tests and proceedures that I care to remember, his delightful presence has blessed us by his will to live, his spirit, and his ability to learn, despite all the odds against him.

It has been a delight and pleasure to parent these amazing kids. I have learned so much about myself, my priorities, about my Lord and Savior, and about living in the moment from these kids. Though they have brought with them struggles beyond measure, they have blessed us far more abundantly than that!

May I add, last but not least, my Beaner (Hannah). She was my first child, but now she's not my oldest. She is totally typical, bright, precocious, gentle and sweet. She never asked for such a house full of crazy sibs, but she wouldn't change them. She is, by virtue of being the only typical child in a house of 4 kids, also a child with special needs. Of all of my amazing kids, she amazes me the most. What a blessing she is!

When Did This Happen

I was reading on a discussion forum today and started crying. By God's grace alone I was able to respond in what I think was an upbeat manner, we'll see how people react.

The problem was language. The thread was about a potential adoption opportunity in which both of the birth parents have some form of seizure disorder or mental disability, it's hard to tell exactly.

The overall note of the thread was open, honest and good. What bothered me was that a few posters used terms like "suffer from a disability" or "Down syndrome babies".

Have you seen the photos of my boys? Are they suffering? Are they defined by a third 21st chromosome, giving them a title of Down syndrome baby.

These little stinkers amaze me so much. I think of Schmoozer. Born with 5 weeks early with Down syndrome and Hirschsprung's disease (which was not treated until he was 15 months old). Developed Hypothyroidism and has moderate to severe hearing impairment, and deals with Cyclical vomiting syndrome to boot. Yet this little man is so full of life, so ready to give each day his best, so bright and beautiful! He has so many knocks against him, yet he's out to rule the roost and live the good life.

And Bert. Again, born with Down syndrome, his sensory systems send crazy mixed signals, he has to work hard to find a word he wants to use, and even harder to get his mouth around it. But his is such an incredible little person, he brings a smile and light everywhere he goes, and digs in and gives his best, he meets each challenge he faces with eagerness and excitement.

My sons are not suffering with mental retardation. They have not been afflicted, and it doesn't define them. They are children of God. They are beautiful and incredible. My biggest wish is that the whole world could see them as I do!

I'm putting it Together

2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2

For the first time in a long time, I am hoping that things are all adding up, that we are getting somewhere, and that there is a break in my reasonably near future. Schmoozer's getting hearing aids. That is the last of the significant medical stuff we've had going on with him. We've been able to manage his Cyclical Vomiting better since we know what it is and have meds to deal with it. I can hardly believe it's been 2-1/2 months since he's been admitted to the hospital! He was admitted 8 times last year, for at least one night, and up to 10 nights.

We have Bert's sleeps study done, we have Speech lined up (waiting for the therapist to get approval from our insurance to start), he's doing well in his new school. So once we get the sleep study results and whatever treatment is required (possible surgery?), we should be sailing pretty smooth with him too.

Beaner is hanging in, but needing extra lovin'. Rockstar has an enormous Grad Party to prepare for, but that's cake.

I think I see light at the end of the tunnel, and I think I like it. What would a semi-normal family life be like?

And the Spirit Bore Witness

It wasn't a big deal, just a nudge. In my mind, I kept thinking I needed to say something. It seemed out of context, and I nearly ignored the nudge, but it kept nudging, so I spoke. Though I had no inkling, my words were an enormous blessing to someone who needed to hear them. What was only 2 sentences to me was a milestone to a friend. I am so thankful for the Spirit guiding our hearts and words.

Early in the night last night, Schmoozer started vomiting. It quickly became obvious that this was a CVS episode. We got out the Zofran and gave him a dose. He promptly vomited it. Immediately following the vomiting we popped in another dose (no need to fear OD, he is on about half the median dose). He retched a few more times, and started dozing. He dozed restlessly for nearly an hour, with loud bowel sounds and a bit more retching, then slept the rest of the night. This is unprecedented. This is our first attempt at using the Zofran at home, and praise Jesus it worked. No dehydration, no Emergency Room, no multiple IV attempts, no night in a clanky crib with me in a lousy cot. We stayed home, we made it. A bit of laundry and a tired clingy day, but we made it.

Teenage Girls

I wouldn't wish one on my worst enemy. Seriously.

I can deal with Cyclical Vomiting Syndrome, Down syndrome, Hirschsprung's Disease, Sensory Processing Disorder, ADHD (that's what Bert's autistic symptoms turned out to be), ANYTHING, but the teenage girl.....Lord help me!

Marathon vs. Sprint

That's what Schmoozer's diagnosis means to me. That I'm running a marathon, not the sprint I signed up for.

I planned to get a diagnosis that was treatable, at the very least, if not curable. Instead his diagnosis is manageable. That means this is a marathon. He will continue to have vomiting episodes. I can try to help minimize them, but they will happen. When they happen, I can use some tools to keep him from getting SOOOO sick, and getting dehydrated and buying a night at the priciest joint in town. But there is not a procedure, a medicine, a treatment, a surgery that will clearly help. It's all trial and error, and there is no way that some doctor or I can definitively prevent another episode.

He's so little, and this is so clearly uncomfortable, painful and miserable for him. I just wanted that magic pill to eliminate the problem. If I could show you what it looks like, really looks like. His eyes glazed over, his body floppy, the gut wrenching retching and heaving. We lay blankets on the floor, and place a towel over the blankets. He brings up the remnants of the previous night's meal first, then stomach juices, then bile, then nothing, but the heaving continues. Every 5-10 minutes at it's peak, heaving, heaving, heaving. The growl of his stomach is the harbinger. A stomach growl that you can hear clearly across a large room. As the vomiting slows it's accompanied by loads of diarrhea, stomach cramps, misery. To know that this will be something he lives with for years, not weeks or months.... Consider this:

With a larger cohort, the median peak rate of emeses is still 6 times per hour (Li and Fleisher, 1999). Only Bacillus cereus food poisoning matches this high intensity of emesis (Li and Balint, 2000).

We are looking at the worst case scenario vomiting. That horrid food poisoning, that worst flu you ever had, my son has that every 3-6 weeks.

Surely I can run this marathon. I hadn't signed up for it, but I'm in. I will change from track cleats to good supportive running shoes, manage my pace differently, and make sure to get plenty of help and support to endure the long stretches of "hitting my wall". But what about poor Schmoozer, he didn't sign up for anything, no sprint, no marathon. He's just a little boy.

I PROMISE.....

to get to that 8 thing meme, I mean it, I promise!

Today I am still so frustrated. I'm not gonna lie, I hate Schmoozer's new diagnosis. I could handle surgery (been there, done that), I could handle serious intervention, but to be told that my kid is just gonna go down into a semi-conscious, limp state and vomit every 5-10 minutes for a day, roughly every 3-6 weeks, in an ongoing fashion, well, it makes me mad.

He's only 21 months, many kids don't start this until they're 3-7 years old, on average. He's already dealing with Trisomy 21, Hirschsprung's Disease, hypothryroidism, and Reflux, c'mon? At first this appeared to be a complication of his Hirschsprung's, something he'd grow out of, now we know that this is something with which he will struggle for years. We can make every effort to manage it, but it will still happen. Eating journals, special diets, etc, they can help, but the average school age kid misses 24 school days due to this monster.

All of this comes on the heels of a stagnant, dry period of faith for me. Remember all those posts of faith? Where have they gone? I read through my devotionals in a cynical haze, when I read them at all. The wonderful families in my church who were so helpful and kind at first have tired of trying to help our family, the cards, calls, and offers of help have dried up. After two years of trying I don't believe I'm any closer to getting Bert involved in the kids programs, and I'm just plain disappointed.

I'm struggling, I'm really struggling right now. I don't want to be strong any more. I just don't want to.

CVS

This is what we've been doing this week with Schmoozer.

What is CVS?

(A comprehensive explanation first posted by Jeremy's Mom)


Definition:

CVS is an uncommon, unexplained disorder of children and some adults that was first described by Dr. S. Gee in 1882. The condition is characterized by recurrent, prolonged attacks of severe nausea, vomiting and prostration with no apparent cause. Vomiting occurs at frequent intervals (5-10 times an hour at the peak) for hours to 10 days (1-4 most commonly). [1.] The episodes tend to be similar to each other in symptoms and duration and they are self-limited. The child is generally well between episodes. [2.]

Onset:

The onset of CVS occurs in infancy through adulthood but most commonly between age 3-7. [1.] It can persist for months to decades. The episode may recur several times a year or several times a month. [2.] Females are affected slightly more than males.

Symptoms:

The child may be prone to motion sickness, and there is often a family history of migraine. [3.] Episodes may begin at any time, but typically start during the night or early morning. [1.] There is relentless nausea with repeated bouts of vomiting or retching. The child is very pale and resists talking. They often drool or spit and have an intense thirst. [2.] There is often intense abdominal pain and less often headache, low-grade fever and diarrhea. Prolonged vomiting may cause mild bleeding from irritation of the esophagus. [3.] Patients often describe being 'possessed', out of control and stuporous. [4.] The symptoms are frightening to the child and family and can be life-threatening due to dehydration and electrolyte imbalance. [5.]

Diagnosis:

CVS is difficult to diagnose because it is infrequently seen in clinical practice and because vomiting may be caused by a large number of common disorders other than CVS. There are as yet no blood tests, x-rays or other specific procedures used to diagnose the disorder. The diagnosis is made by careful review of the patient's history, physical examination and studies to rule out other diseases that may cause vomiting similar to that seen in children with CVS. [1.]

Triggers:

Although some patients know of nothing that triggers attacks, many can identify specific circumstances that seem to bring on their episodes. Emotional stress, intense excitement (birthdays, holidays, vacations), [1.] and colds or flus [2.] are the most frequently reported triggers. Specific foods or anesthetics may also play a role. [3.]

Treatment:


Treatment is generally supportive with early intervention in a dark quiet environment for sleep and I.V. fluids when needed. [1.] Medication trials sometimes succeed in finding something to prevent, shorten or abort the episodes. [2.] An essential component of treatment is the doctor-patient-family relationship. It involves a physician who does his/her best to understand CVS, is supportive and willing to coordinate the care in collaboration with all involved. [3.] A family/professional network, such as CVSA, can help heal a family that has been in doubt and despair for years. [4.]
1. Fleisher, D. and Matar, M. (1993), 'The cyclic vomiting syndrome: A report of 71 cases and literature review" J Pediatr Gastroent Nutr; 17(4), 361-369.
2. Fleisher, D. R. (1994). Cyclic Vomiting. In P.E. Hyman & C. DiLorenzo (Eds.), Pediatric gastrointestinal motility disorders (pp. 89-103). New York: Academy Professional Information Services.
3. Forbes, D. (1995). Cyclical Vomiting Syndrome. Journal of Paediatric Child Health, 31, 67-69.
4. Gee, S. (1882), 'On fitful or recurrent vomiting' Saint Bartholomew's Hospital Reports, 18, 1-6.
5. Hoyt, C. and Stickler, G. (1960). 'A Study of 44 children with the syndrome recurrent CVS' Pediatrics, 25, 775-780.
6. Li, B U.K. (Ed.) (1995). Proceedings of the international scientific symposium on CVS held July 1994 in London, England, J Pediatr Gastroent Nutr; 21, (Suppl. 1).
7. Pfau, B.T., Li, B U.K., Murray, R.D., Heitlinger, L.A., McClung, H.J. & Hayes, J.R. (1996). Differentiating cyclic from chronic vomiting patterns in children. Pediatrics, 97, 364-368

Copied from the blog of my friend Childlife, who also has a kiddo with CVS.

I will get to the meme I was tagged for next week, sorry for the delay. Keep Schmoozer in your prayers, he's having a rough week, one night in the hospital, and still struggling.