So here I sit, counting down the days until my sister arrives. We are so looking forward to fun fun fun, and yet right on the heels of all of this upcoming fun is Kailey’s surgery.

A day of beauty is SOOO what I need, and Kailey will love being pampered. There is really nothing she loves more than having her hair done, and she will have a mani/pedi as well. WOOHOO. Girl power!

Dwelling behind the excitement is fear and projecting, assuming, guessing. I worry about how she will do during the surgery. I assume that her recovery will be difficult and that her meds will be pretty heavy duty. I project what methadone treatments will be like for a six year old vs a 3 month old (the last time she had to go through them). I say methadone treatments because Kailey gets addicted to the morphine or the fentenyl that they give her. After heart surgeries I have been able to get them to take her off of it after one day. But this surgery is so extensive that I imagine it will be impossible to take her from morphine after only a day, and so I worry about the addiction.

To see a baby “jonesing” for some meds is heart breaking. So see them shake and have a hard time of it is like noting I ever want to see again. But now I fear I will have to see it happen again… and this time she can talk and remember.

It would be wonderful if these things don’t happen! I just can’t help but imagine them.

So here I sit, waking up at 5 am every day because of the thoughts haunting me at night. Because of the excitment surrounding my sister’s visit. Because of the fear of handing her over for a surgery that is voluntary and not medically necessary. Because out past haunts our future, and the reality of it makes me feel ill.

A week from now we will be in the hospital. We will be doing the colon cleanse and suffering the blow outs of go litely. BLECH. A week from now I am sure to be on here laughing about how the stink is KILLING my sister. LMAO. A week from Friday I will be here begging you all to pray harder than you have ever prayed before. A week from Saturday we will be on the recovery end of things, and no matter what that brings, it will be a relief from where we stand right now.

In less than week my sister will be here to get us started on our road to surgery. First fun times with mani/pedis for the girls, the aquarium for the whole gang, and the movies for the boys. Then Kailey gets admitted and the clean out begins. They have to wean her off of coumadin & they have to cleanse her bowels. Should be a hoot of a few days. GAG

We are struggling at home here. Questioning our decision to go ahead with this, but in the end its is what has to be done. Kailey deserves to have the dignity that these surgeries will afford her. No more diapers, no more stink. No more kids calling her a baby because of the above.

Keep us in your prayers. Tensions are high. fear looms behind every thought, and frankly we need all the support we can get.

thanks everybody!
Michelle

To you, my sisters of Special Needs Children

By Maureen K. Higgins

Many of you I have never even met face to face, but I’ve searched you out every day. I’ve looked for you on the Internet, on playgrounds and in grocery stores.

I’ve become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my “sisters.”

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist’s offices and NICU units, in obstetrician’s offices, in emergency rooms, and during ultrasound’s. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed.
Something wasn’t quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children’s special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children’s needs are not as “special” as our child’s. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know “the” specialists in the field. We know “the” neurologists, “the” hospitals, “the” wonder drugs, and “the”" treatments. We know “the” tests that need to be done, we know “the” degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and physiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment
for our children with spinal cord defects. We have sued
municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during “tantrums” and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated insane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can’t understand what it’s like to be in our sorority, and don’t even want to try.

We have our own personal copies of Emily Perl Kingsley’s “Welcome To Holland” and Erma Bombeck’s “The Special Mother.” We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors’ front doors on Halloween, and we have found ways to help our deaf children form the words, “trick or treat.” We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We’ve gotten up every morning since our journey began wondering how we’d make it through another day, and gone to bed every evening not sure how we did it.

We’ve mourned the fact that we never got to relax and sip red wine in Italy. We’ve mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we’ve mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.

What is a Mitrofanoff and why might my child need one?

The Mitrofanoff procedure creates a channel into the bladder through which a catheter (thin, plastic tube) can be inserted to empty the bladder of urine, instead of passing urine through the urethra. This channel – which looks like an extra tummy button – is usually referred to as a ‘Mitrofanoff’, and is created in an operation under general anaesthetic. Sometimes, this is done during an operation to enlarge your child’s bladder. Please see our leaflet Bladder augmentation: information for families for more details.

Children who are incontinent (wet) may benefit from this procedure. It allows the bladder to be emptied several times a day, reducing the chance of the bladder leaking urine. It can be psychologically easier and physically less uncomfortable to insert a catheter into the Mitrofanoff rather than the urethra. It can also allow older children to lead a more normal life. The Mitrofanoff procedure is often used for children with bladder problems due to spina bifida, bladder exstrophy or bladder obstruction (posterior urethral valves).
What does the operation involve?

If your child has already had his or her appendix removed or if it is not suitable, the surgeon may need to use a piece of the small intestine to create the channel.
The surgeon will disconnect your child’s appendix from its usual position on the large intestine and open it up to form a tube. He or she will then connect one end to a small incision (cut) in your child’s bladder and the other end to another small incision in your child’s abdomen. The surgeon will also create a ‘valve’ where the tube joins the bladder, which squeezes shut as the bladder fills with urine. This will reduce the chance of urine leaking from the Mitrofanoff.

********************************************************************

The MACE Procedure…

The operation uses the
appendix, or if it has been
removed, a similar sized tube
fashioned out of bowel. The
appendix or tube is implanted
into the caecum, the “top of the
colon”, to create a valve.

The valve allows a catheter
to be inserted into the colon,
but stops anything coming
out in the opposite direction
at all other times.The
outside end of the appendix
or tube is attached to the
skin, either at the umbilicus
(belly button) or somewhere
else on the abdomen,
creating an opening known
as a stoma.

Using the MACE
About three weeks after the operation the colon is thoroughly cleaned of any constipated
stool using Golitely (or another colonic lavage preparation) by running it through the MACE
stoma. Thereafter the person or their carer inserts a small catheter into the stoma and runs in
an enema solution while they are sitting on the toilet. Because this is done regularly there is
no hard stool in the colon and the clean out usually takes from 15 to 45 minutes. The enema
is generally used every day although some people only need to use it every two or three days.

Kailey had cornrows while at beaches

So Kailey’s bladder reconstruction, mitroffanoff and Mace procedures are right around the corner. I have started to make mental notes about our stay at the hospital.

Staying there a few weeks ago was a good thing. While they redesigned the cardio floor and the rooms are very nice, there are no parent kitchens on the immediate ward. There is a common room between the CICU and the stepdown unit. I have to go through double doors and really LEAVE Kaley to get there. They don’t offer any juice or crackers for the parents either. So I have to bring a few 12 packs of water and soda. I am not paying 1.75 per botttle of coke, thats for sure!

Last time she was there her very curly hair got matted. the back of her head had a huge knot. So I am going to go ahead and have some corn rows put in her hair. It will make life easy as she won’t be showering for a while and sponge baths are difficult when it comes to washing the hair.

I hope to have my new lap top by then. but if not Ihave my trusty Iphone.

Sis Sue will be with us the first few days. Kailey should be pretty out of it for the days following the surgery. To pass some time I am bringing scrabble.

Kailey has made some prep pf her own and invited Mrs. Fraley to be with her again when she gets her silly meds before the surgery. I guess Mrs. Fraley is a pretty cool chick to be high with! THATS not saying Mrs. Fraley was high, but Kailey was FLYING!

Okay so if anybody has any other suggestions please let them be known!

“Handicapped” Why is it some people shy away from using this word? New terms such as Handi-cappable have come into the politically correct world. handicappable? REALLY? HONESTLY? sigh, come on people.

We use the word handicapped in our home. Kailey uses it when children ask her why she doesn’t walk. She will tell them “I am handicapped and my legs don’t work”. I wonder if little Johnny goes home and throws his mommy over the edge when he says ‘I met a handicapped girl today’.

Why has it become taboo to use this word? Nobody is going to go to the DMV and apply for a handicappable or gently crippled parking permit. They are not going to fill out medical forms for supplementation on being ‘differently challenged’ or ‘challengedly able’

While on the subject… hare lip is incorrect, cleft is correct. Disabled covers things quite nicely when dealing with either a physical handicap or a mental one. Autistic doesn’t mean mentally retarded. Children with Downs Syndrome are not mongoloid children. Gimp and cripple are just screwed up.

So folks, lets see it for what it is. Disabled, handicapped, Autistic, Downs, slow, neurolgical disablities, clefts.

Wheelchairs are not evil nor are the people in them. A child who has sensory issues is not a monster, but is hurting when they are having that melt down. A person with Autism who simply doesn’t GET IT… is just that! Incapable of understanding the issue at hand!

Toys R Us is to thank for this rant, as they have a whole special HANDICAPPABLE addition to their catalog, and it made my brain itch and my panties knot!

1st blog will be about the whole gang, although many Kailey blogs will be following shortly. She has surgery coming up June 5.

So here we are nearing the end of the school year. Kevin is reading like a champ, and is slowly coming into his own. He is a sensitive child and his feelings are so easily hurt that many times while playing with his friends outside he is just deminished to tears. At 7 years old he is finally starting to suck it up and tell them “I’m going home and don’t feel like playing with you”…. THEN the tears come once the front door is closed behind him. LOL. Poor guy

TJ is a trip and a half. Letting him go to school in August is going to KILL me! He is a little love bug, but he is a spit fire as well. Do it his way or there will be hell to pay!

Alison is 18 months old and the newest nudist in the group. SHe is little Kevin all over again. I can’t get over how quickly she can strip! And she hides her clothes too! There have been many a diaper I have stepped on lately. Its not fun. But she sure is cute.

Big Kev and  I, well we’re just along for the ride. Life is hectic and scary, insane and mundane.We wake up each day with no idea what we will be faced with.

Its a first blog, and a fast blog, but I’m tired and Kailey will be sure to raise hell tomorrow. Oh… yeah… Kailey!!!

She is 6 and will be going into a mainstreamed Kindergarten in August. She is sweet as pie in school and satan’s spawn at home. I have people who can attest to this, so don’t go tisking in disbeliefe. The child is a Riess girl through and through. God is getting me back for the way I was from 12-25… only she is SIX damn it!