"Secretly Disabled"

I've had a post sitting in my "to be posted" list for quite some time now.  I keep going back to it, re-reading it, editing it yet again.  Somehow, I can't get it just right.  No matter what I write or how I write it, I can't find the words to express what I'm trying to say without sounding whiny or complainy.  Just yesterday, a fellow blogger, Matthew's Mommy, posted on the same subject.  She referenced another blog post that you can (and should) read HERE.

Basically, these moms have hit the nail on the head.  We have been parenting a "secretly disabled" child for just under a year now.  She is cute, cuddly, beautiful, sweet and, not so obviously, disabled.  You cannot see the dozen scars on her head or the two shunt bumps and tubing.  Her central line is hidden by her shirt as are all of the scars on her chest and abdomen.  You can't see the scars on her neck because of her super-cute, chubby chins.  You can't tell that her left arm and hand don't work.  You can't tell she has Cerebral Palsy.  You can't tell that she has Epilepsy and significant neurlogic damage.  Her nystagmus causes her eyes to be in constant motion which outsiders take as her "looking around at everything."  Anytime EVERY time we take her out anywhere, there are comments, whispers and curious glances.  "Oh, she's so sleepy."  "Isn't she walking yet?" "What's wrong with her eyes?" "I can't seem to get her attention."  "Maam, we don't allow strollers in here."  I could go on and on.  Although ignorant and hurtful comments do drive me nuts, I'm more bothered by the people who stare or whisper and don't have the guts to ask a question.  Now that we've got M's wheelchair, it is slightly more obvious to people that she may have other issues, although many people think it's just a really fancy stroller.  In a way, it has helped "out" us.  While I don't give a hoot what other people think, it's exhausting to constantly have to justify and explain things.  M cannot sit in a high chair, a booster seat or a shopping cart.  She's too heavy for infant seats.  Basically, without her wheelchair, we cannot take her to a restaurant or a store unless we hold her the entire time - not fun for her or us. 

My desire to write this post was driven by my sheer need to just get it off my chest.  However, hopefully there's a little bit of education here, also.  Hopefully when you're out and about you'll remember that people are so very diverse.  Everyone is dealing with something.  Don't make assumptions and if you have a legitimate question - ask it! 

Vision Evaluation

Today M & I had the pleasure of meeting with two individuals from WCBVI.  I learned so much in a very short amount of time.  Hopefully they'll get their report and notes out to me soon because certainly there are things I have forgotten already! 

What we discovered is that M does indeed have one, tiny area of functional vision.  It is, as we suspected, in the lower, right periphery.  She actually appears to visually engage in that field up to four feet away.  She has zero functional vision closer than about 4 inches, zero to the left, zero upward, and zero midline.  She "shuts off" her vision any time she is presented with a challenge and anytime she is startled or uncomfortable.  They also noted she appears to possibly have some cortical-auditory impairment and are working on a referral for that evaluation.  Basically what all of that means is that her eyes and ears are perfectly normal, but the pathways used in her brain to process information are not working properly.  The good news is that with training, these types of impairment CAN improve.  She will likely never have 100% functional vision.  She will always have an impairment.  However, with a lot of hard work, she COULD get to a point where visual input could be a part of her life. 

The most valuable thing I took away from our meeting is a sense of what living life without vision is like.  I learned how M should be handled, approached, talked to, touched, introduced to people/things.  I learned that she deserves and requires a lot of respect in terms of her personal space and her desire to do (or not do) things. I was reminded that it's okay for me to remind people that they should ask permission before approaching my child.  I learned about some of the things we're doing right and a lot of the things we could be doing better for her.  Truth is, there is a lot we need to learn and some changes we need to make.  We definitely need to slow down A LOT!  I learned about hand under hand assistance, dandy hands, calendar systems, and passive transport.  I learned about synapses and senses.  There are so many things we can do in the present to help improve her future. 

I will make it a point to try and share some of the techniques we try and the outcomes for those of you with CVI kiddos.  I welcome input and suggestions as well!

20!

Check out my ticker waaaaay at the bottom of the page.  I've been waiting for sooooo long to hit that milestone!

Another Great Article

Thank you, Laurie!!

Kyrgyzstan: American Adoptions Still Stalled


September 30, 2010 - 1:55pm, by Laurie Rich

There’s a tiny grave near an orphanage on the outskirts of Bishkek. It holds the body of an undersized 2-year-old girl who died in August from complications of a disease that is dangerous, yet often manageable in the United States. The little girl, who had been matched for adoption with a Florida doctor, is a casualty of a moratorium on international adoptions imposed long before Kyrgyzstan became engulfed in turmoil this spring.


The dead girl’s adoption, along with those of 64 other Kyrgyz orphans by American families, had been stalled for roughly two years. After protracted talks, officials on both sides are optimistic that the adoption logjam will finally be broken -- but they all concede that the issue will ultimately need to be resolved by the Kyrgyz legislators who are elected in the nation’s October 10 parliamentary elections.


“The parliament will be back and (proponents of completing these adoptions) have quite a serious lobby there,” Kyrgyzstan’s provisional president, Roza Otunbayeva, told EurasiaNet.org on September 23. Otunbayeva was in New York for the 65th United Nations General Assembly.
Kyrgyz officials are currently reviewing a memorandum of understanding (MOU) prepared by the US State Department that, if signed by both governments, would expedite the adoptions of the 64 orphans. Ambassador Susan Jacobs, The State Department’s Special Advisor for International Children’s Issues, presented the MOU in mid-September to different Kyrgyz ministries during a special trip to Bishkek.


Jacobs said that once both governments agree on the document’s language, the MOU can be submitted to the new sitting parliament in Kyrgyzstan for approval.
"We're hoping that we can get this done before the end of the year," Jacobs said. She acknowledged that the disabilities and developmental delays of many of the children added an element of urgency to the process. “While these children were offered for domestic adoption, they were not adopted. So they were institutionalized. These are tough cases; these children need to be in a loving home."


Time means the most to the prospective adoptees in need of medical help and therapy. The younger they are, the more effective surgeries and therapy can be. Carrie and Bob Delille of Virginia are trying to bring home one of the oldest children in the group of 64, an 11-year-old boy with a cleft palate and possibly a bone condition. The palate issue means the boy basically has no roof to his mouth, makes eating difficult.


“If this [adoption] process had gone the way it was supposed to, he would have come home a year earlier,” Bob Delille said. “Instead, here he languishes in an orphanage undernourished, with no surgery, and with rickets.”


According to local news media, the MOU has Kyrgyz support. Feruza Dzhamasheva, chairwoman of the Supreme Court, met with Jacobs on her visit and “expressed readiness to co-operate in achieving an aim, because Kyrgyzstan is also interested in helping those children to join their families,” Kyrgyz news outlet 24.kg reported.


Drafting the MOU was a Kyrgyz recommendation. A delegation visiting the United States in late August suggested that the United States create an agreement as a way to restart talks on the issue that had languished. The Kyrgyz officials requested two specific provisions be included: that the children retain their birth citizenship after adoption and live as dual US and Kyrgyz citizens; and that the government receive a yearly report on each child until his or her 18th birthday.


Keeping tabs on local children adopted by foreigners is a sensitive issue in the former Soviet Union. Reports of Russian orphans who’ve died since being adopted internationally have stoked fear about the process in the region, as did the incident last April when a Tennessee woman relinquished her adopted 7-year-old son by placing him alone on a plane back to Moscow.


The Kyrgyz government is currently rewriting its laws on international adoption to address these concerns and to try to reduce corruption in the system. The MOU would only resolve the 64 pending cases. A moratorium would remain in place on new foreign adoptions from Kyrgyzstan until new legislation is enacted.


After two years of starts and stops, dozens of unfulfilled promises from governments and adoption agencies, and political upheaval in Bishkek that nearly unraveled all their efforts, some of the 64 families are guarded when discussing the MOU.


“We have to manage our emotions,” said New York resident Frances Pardus-Abbadessa, who, along with her husband, Drew Pardus, is hoping to adopt a 3-year-old boy. “As much as we want to get excited, there are still too many potential barriers that could cause this wonderful timeline to go astray.”


As time ticks on, the story of the two-year-old girl’s sad fate sits in the back of many waiting parents’ minds. The girl’s adoptive mother, a Florida pediatrician named Suzanne Bilyeu, was the first to diagnose the child’s advanced hydrocephalus from photos she received in March of 2009, seven months after she was originally scheduled to bring the girl home. This led to two in-country surgeries, the second of which was this summer. The girl died a few weeks after that last procedure, on August 9.


“She’s what we’ve all been so afraid of, what we all thought could happen,” Bilyeau said, discussing the fears of the families as they wait thousands of miles away from the children they hope to bring into their own families. “She undoubtedly is in a beautiful place. It just seemed like such a preventable loss.”


Editor's note: Laurie Rich Salerno is an editor for Patch.com. She lives in Meriden, CT.

Baby Steps

M had her follow up EEG this morning.  I LOVE our Neuro in that she always reads it and sees us immediately following to discuss what's next.  Today, she walked into the room with a nice smile on her face.  M's EEG has improved.  The activity on the left side of her brain looks....almost.....wait.....get this.....NORMAL!  I'm not sure we've ever heard that word out of any Dr.'s mouth with regard to M in any respect.  The right side is still showing lots of disorganization and spikes (more on that in a minute), but not necessarily hypsarrhythmia. This is really excellent news.  She started to discuss weaning her off the Sabril (her IS med), but I cut her off.  She's only been on it three months and her response has been really good.  That medication brought her back to us and I'm not quite ready to take the chance of going backwards.  We'll continue it for three months and if she continues to do well, begin to wean.

So, the right side.  That's another story altogether.  The right side is where the bulk of her damage is.  Despite her two Grade IV bleeds being on the left and the one Grade III bleed occurring on the right, it is where she has had the most shunt trouble, thus the most surgical intervention.  Back in February, in one final attempt to control the fluid in her right temporal horn and right ventricles, our neurosurgeon filleted the entire ventricular matrix.  Sounds lovely, right?  In any case, it is also the location of most of her PVL.  The disorganization is to be expected, as is the left-sided hemiparesis that she has.  The spikes are new and are an indication of a new type of seizure.  We were told when she was diagnosed with IS that she was at very high risk of developing other types of seizures or even Lennox-Gastaut Syndrome down the road.  We've tucked that info away in the back of our brains to worry about another day.  Over the past few weeks we've noted some atypical behavior and questioned if it was seizure activity.  Today, M's neuro diagnosed her with Complex Focal Seizures.  It is very possible this new type of epilepsy is replacing her IS.  She is starting a new medication and hopefully she'll respond well to it and we'll get good control quickly.  We're also adding an Omega-3 supplement.

Overall it was a good news/bad news type of day, but I walked away feeling very positive.  Small victories and baby steps are what we thrive on.   

T minus 2 days.....

Let me preface by saying that I LOVE FALL.  It is definitely my favorite time of year.  I love the cooler weather, the trees changing color, fall festivals, carmel apples, pumpkins, I could go on and on. 

On the other hand, I fear it.  October is the official beginning of the dreaded Flu/RSV season.  M remains extremely susceptible and vulnerable to bacterial and viral infections.  She could easily pick something up that could land her in the hospital....or worse.   E is in school 4 mornings per week and he is likely to be the primary culprit of sneaking evil germs into the household.  Kevin works full time around a lot of people and I work in part time in health care.  We're all potential carriers for invaders.

I feel good about the plan I have in place to face the next six months and am going to try so hard to not obsess, but I also have to do what is best for us.  There will probably be limited trips out to stores, restaurants, etc.  We most likely will not attend every function to which we are invited.  This is not because we are antisocial or don't like you - we just need to stay safe.  We may remind you to wash your hands or ask that you not visit if you or someone in your family is/has been ill.  Please don't be offended and please don't tell me that "kids need germs." 

Hopefully we can keep the illnesses mild and to a minimum.  Going into fall/winter, it helps that we already have great habits.  Upon entering the house, shoes come off at the door and hands are immediately washed.  Even E does a great job of this without being reminded (most of the time).  I'm not a fan of chemicals and generally use all natural cleaners, but for the next six months we are well armed with Clorox and Purell. 

WISHING YOU ALL A VERY SAFE, HEALTHY, HAPPY FALL!

Line Stays

Surgery went well.  M did okay, despite needing enough anesthesia to "knock out two large adults" (direct quote from her anesthesiologist).  She always requires a little.....extra juice, but today it was pretty extreme.  Her ENT discovered two new subglottic cysts which he treated and also used the balloon to dilate her subglottic stenosis.  Because things weren't as beautiful and perfect as he wanted them to be, she'll have to head back to the OR in a couple of months to check it all out again.  Because the anesthesiologist couldn't find a suitable spot for venous access, the line stayed in.  I'm bummed, but it's really okay.  Whatever's best for my Dolly!  M had an extremely rough time coming out of the anesthesia, probably due to the amount and combination of drugs she received.  She also developed some very disturbing swelling around her distal shunt.  Her neurosurgeon was paged and it was his feeling that the fluid accumulation was due to a little fluid overload since she received so much in the OR.  Hopefully it will have gone down by morning.  Currently, M is resting fairly comfortably and I'm settling in for a little rubber couch nap. :)

Surgery and pictures



"Goodbye" central line - we will miss you...NOT!



Surgery number 17 (I think) is underway.  I'm so grateful M was healthy enough to go in today.  I did not want to postpone yet again.  When her surgeon popped in to chat, he mentioned that IF he goes in and finds that everything looks perfect and beautiful, she will likely be able to head right home this evening.  THAT would be incredible!  Her central line is also scheduled to be removed while she's in the OR.  She's had it for over 9 months and other than one surgery and one blood draw, it's not been used since April.  We flush it every night and change the dressing every three days, and it's not THAT big of a deal; but, it's one more potential source of infection and one more thing to keep track of.  I'm nervous, yet happy to see it go.



Here's a few pictures from the past several weeks just for fun.

 

Finger coils



Who do you think won this race??



Always the best big brother!

Full tummy - time for some snuggles



Hmmm...how come he always thinks of alternative uses for toys?  Looks pretty safe, doesn't it?

Tooting my own horn

I was reminded by my doctor the other day (during the dreaded annual physical) that it's been just over ONE YEAR since I quit smoking! YAY ME! She also confidently reminded me that the extra...oh...fifty-ish pounds I'm carrying around is still far healthier than smoking. Hopefully next year I can report major success in the fatso category, too.

In other breaking news - I picked up E from school today expecting the usual stern teacher conference and was pleasantly surprised to receive a very good report. She said he was her best student of the day (out of 16 kids)! YAY E! I am so proud of him today and even better was how incredibly proud of himself he was. He was just absolutely beaming.

BUSY

Normally, I hate that word - no, I despise it. I TRY really hard not to use it. Nothing bothers me more than hearing "I'm so busy, I can't..." or "I was too busy to..." or "I've been so busy I haven't been able to..." Everyone's busy, no one has enough time for anything, "busy" is just an excuse for not doing something you should've, would've, or could've done but chose not to. So, I'll just say - I'm not real sure what happened to my week. I'm sorry I've not posted. This past week was our first week of my "new" (and improved) schedule. I worked a grand total of 13, yup count 'em 13 hours! Still, it seemed I was running around like a mad woman. Two trips each morning to and from school which is 15 miles away, takes a chunk out of the morning. M didn't have any doctor appointments this week, just four therapy visits. Taking care of my kids is.........hard work! They are silly and needy and so much fun!! There are a lot of little projects around here I want to get done and of course, I feel like I have to get them ALL done RIGHT NOW. Kevin keeps reminding me that everything doesn't have to happen the first day. He's right - shhhh, don't tell him that. ;) I think in time, I'll learn to adapt to this new way of life and we'll get into a groove of sorts. I've signed myself up for a YOGA class and E up for Basketball and Swimming Lessons. I plan to get M into the pool a couple of times a week to use her Waterway Babies ring.

A good portion of my free time this week was spent on the phone fighting the system once again. Back in July, we submitted prior authorizations for M's adaptive bath seat and wheelchair. The first week of August, our primary insurance approved it all at their contracted 75%. That left 25% for her Medical Assistance to cover. They have reviewed and sent back the PA's FIVE TIMES. Each time it's something completely stupid and arbitrary. Because M loses her primary coverage Sept 30th (don't get me started on that one), time is of the essence in getting this stuff ordered. Finally, fed up with they way the system "works" (or doesn't), I contacted our Senator. Long story short, a community advocate was contacted and she initiated a string of communications with the folks at MA. On Thursday she submitted a formal request to review and expedite the PA's AS SUBMITTED per Sen. Fitzerald's request. On Friday morning I received a call from our vendor stating she had all of the APPROVED PA's in her hands. So, we'll be getting M's equipment - hopefully by our Sept 30th deadline.

Currently, M has a cold. It was really bad on Friday, but seems to be getting a little better. She is schedule for surgery on Wednesday and I have my doubts that they are going to allow it to happen unless she makes a truly miraculous recovery! It has been postponed THREE times already. I guess, on the bright side, it's good to have a postponable surgery. That means that whatever needs to be done is definitely not an emergency - we like that!

E has earned a set of horns from school. I'm not sure what happened, but it's as though a switch was flipped and he became this ignoring, potty-mouthed, sassy, tongue-sticking-outing, drama queen. I know it's partially just being 4, partially the loss of his long-term teacher and the introduction of a sub, and partially the other sassy boys in his class. I don't know when it will end. I don't know if I will make it through this stage with my sanity intact. All I know is that we sound like broken records and he's getting permanent flat butt from hanging out so much in his time-out chair. Hopefully he'll remember soon that disrespect is absolutely forbidden in our family.

In very sad news, the govt. of Kyrgyzstan has allowed another precious child to die in orphanage care. This beautiful girl was matched back in 2008 with a wonderful American family. She developed hydrocephalus, which went untreated initially. She suffered irreversible damage before receiving medical intervention. Sadly, she lost her battle. As a mother to a child with very complicated hydrocephalus, this infuriates me even more. This little girl did not have to die. She did not have to suffer for two years. She SHOULD'VE been home with her family where she WOULD'VE received high-quality care RIGHT AWAY. She SHOULD and WOULD be toddling around her home right now if it weren't for politics and bureaucracy. Hopefully this angel has found peace. Hopefully there will not be more casualties as the delays drag on. Prayerfully, those who are working so hard for the orphaned children and waiting families will be able to make an impact with the powers that be and convince them to free these kids.

Heaven’s Special Child

A meeting was held quite far from Earth,

It was time again for another birth.

Said the Angels to the Lord above -

“This special child will need much love.

Her progress may be very slow,

Accomplishments she may not show.

And she’ll require extra care

From the folks she meets down there.

She may not run or laugh or play,

Her thoughts may seem quite far away.

So many times she will be labeled

‘different’, ‘helpless’ and disabled.

So, let’s be careful where she’s sent.

We want her life to be content.

Please, Lord, find the parents who

Will do a special job for you.

They will not realize right away

The leading role they are asked to play.

But with this child sent from above

Comes stronger faith, and richer love.

And soon they’ll know the privilege given

In caring for their gift from heaven.

Their precious charge, so meek and mild,

Is heaven’s very special child.”

–compliments of ‘Dear Abby’, 12/03/09

Catching Up

Sorry I've been MIA for a week. We really didn't have anything out of the ordinary going on, but it seemed to be busier than normal.

E started 4K this week. I don't know how he grew up this fast. If anyone knows how I can slow it down, though, please share! The first day was a bit.......hectic and......challenging. Okay, so I picked him up and his teacher says to me "I was not impressed with E***'s behavior today." Not exactly what I was hoping to hear, but I did expect a few issues at first. With his Sensory Processing Disorder comes behavior problems. They are not new to anyone, including his teacher, but they are definitely amplified by big changes in his environment and schedule. Add to that there were several new boys who had never been outside their homes before and had no clue how to behave in a school environment and you have a 4 year old BOY with SPD bouncing off the walls trying to imitate his new friends. There was a car meeting, dinner meeting, bedtime meeting, breakfast meeting, second car meeting and a brief morning meeting at school and I'm happy to report the second day was fantastic! Hopefully the trend will continue. We're grateful that he and his teacher have been together for the last 4 months so that is one constant in his school life.

The "Happy Backpack Dance" the night before

0615 darkness the first day of school - I had to be to work super early that day! :(

Ready to get on with the first day! sniff...sniff...how did he grow up so fast??

M is doing well. She had another cold - I know, hard to believe, right? She has been so incredibly interactive and happy this week. She's getting new teeth and they're coming sooooo fast! She has also suddenly found muscles and coordination she never knew she had. When on her tummy, she'll pull her head and shoulders off the ground. She can hold her head and trunk upright with assistance and she is starting to use her left leg more. Throat surgery is rescheduled for September 22. If all goes well, we'll spend just one night in the PICU and hopefully this is her last throat procedure.

Noodles - poised and ready.....

Righty never fails.....let's see if we can get a message to lefty to join in the fun....
Look at that - TWO STRAIGHT (chubalicious) LEGS!!!! Is that phenomenal coordination, or what? Joyous pride at my huge accomplishment!
Four, almost FIVE teeth already

Lounging, "watching" a little TV

Sleepy time

The weather has been Heavenly (by my standards). I LOVE Fall, I LOVE cooler weather, I LOVE when the air conditioners come out and the windows can stay open. E LOVES puddles!
In less happy news, the Government of Kyrgyzstan continues to hold innocent, sick children hostage. Despite making promise after promise, these children are still suffering. They are still lacking nutrition, love, socialization and medical care. There are families waiting to welcome them into their families and yet the powers that be continue to deny these children their basic rights. I don't know how these people sleep at night or look at themselves in the mirror in the morning. Perhaps they should look at this sweet face instead. Please keep all of these orphans and their waiting families in your prayers.

"Baby" K - we love you, sweetie!

WELCOME TO HOLLAND
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.

It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around... and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never go away...

because the loss of that dream is a very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

A Tiny (Trivial) Tantrum

Let me preface by saying I'm trying really hard not to be a whiner. I'm trying to be grateful that we're not sitting in a hospital room. I'm trying not to be bitter about the cesspool that is daycare. Seriously, though - give my girl a break! M now has pink eye. Yup, pneumonia to back-to-back upper respiratory infections, to pink eye. Don't get me wrong all of these things are way better than shunt failures, hemorrhages, and blood infections so I'm not complaining....really. I just want her to have a week or so of health! Is that too much to ask? Tantrum over.

Final....FINALLY!

It's been a looooong time coming, but M's adoption is finally final! There was a lot involved with coordinating finalization via video conference. Mostly that the State of Louisiana doesn't allow finalizations to occur anywhere but in the courtroom of the sending agency's Parish. Thanks to our SW and Attorney well-written appeal, the judge granted an exception to our case. So, this morning, Via Skype, our case was heard, the decree was signed and M was declared an official Fenske!

And she's rolling.....

....almost! Yesterday, M got a little crazy and started doing a sort of "half-roll." Usually, you could place her in any position, no matter how bizarre, and she'd just lie there. She does not typically have the strength or coordination to get herself into or out of any position. Well, yesterday, when placed on her side, almost to her stomach, she would consistently roll herself to her back. Her therapist was absolutely thrilled and of course, she did it for Daddy several times last night. This is a HUGE accomplishment for her!

In other news, her new wheels have been approved to 80% by our primary insurance. Now we just have to wait for her MA to process the remaining, then we can get an order placed. This is the chair we've decided to go with, although not in this color. It will be a relief to finally have a chair to put her in where she doesn't flop forward, backward and side-to-side. She can be....get this....comfortable AND safe! Unfortunately, our request for an adaptive bath seat has been denied as a "convenience item." Apparently, trying to bathe a wet, soaped-up, slippery 20lb child with no tone who's unable to control her movements is merely an inconvenience. If you ask me (who happens to bathe her), it is down right dangerous. Then again, I don't have the vast educational knowledge on these things like an insurance underwriter does. Bitter? Me? No way! I digress. We still have a slim chance that MA will approve it. If they don't we'll have yet another (very large) out-of-pocket expense. Gotta love insurance companies!

C-L-U-T-Z

This is what happens when you carry two children, a bag, and a bunch of papers while simultaneously trying to remote open the van doors in a parking lot full of holes:


Not broken - THANK GOODNESS! Just a really bad sprain.

Prayers Needed

There is another beautiful, sweet Marissa out there who needs some prayers. This amazing little girl (and her amazing family) is preparing to embark upon a very difficult new leg of their journey with IS/Epilepsy. Please take some time this weekend to pray for them and the doctors that will be caring for her.

CLICK HERE TO READ HER STORY

You just have no idea how grateful we are to see these! A very short time ago, M was so trapped inside herself. Seizure control has really brought out her happiness. In other news - the last picture is my first shot at an actual hairdo. She still doesn't have much to work with, but it turned it out way cuter than I thought it was going to.

Where did it go?

It is AUGUST! How did that happen? I have no idea where this summer (or this year, for that matter) has gone. In two short months, it will be time for us to lock ourselves down in our house and pray for a winter of good health. Yup - I know some of you are shaking your heads already; thinking "she's insane - kids NEED germs to build up their immune systems." You probably don't have a medically fragile child. You probably don't need to worry that that "little cold or 24 hour stomach bug" could be fatal to your child. Flu and RSV season is rapidly approaching and I won't lie, it frightens me. We spent 3 months in the hospital last winter (and we know what a germ factory hospitals are). Yet, M managed to not even get a single cold all season. She got her first cold in April one week after starting daycare. She was sick again in May - thanks to daycare and she had pneumonia in July.....again....daycare. Currently she has more upper respiratory crap. Luckily, none of these infections have landed her in the hospital. Winter is a frightening time for parents with medically fragile children. Please, as the season looms near, remember those with children who may not be as strong as yours. Respect them and respect their wishes. WASH YOUR HANDS and don't roll your eyes if they come at you with a bottle of hand sanitizer. Please keep your children home when they are ill. Please, if you are ill or have been ill, or have been around someone who has been ill, postpone visits to loved ones who are at high risk. I'm hoping we survive the winter with few illnesses and, dare I say, zero trips to the hospital.



In other news, I'm happy (and scared to death) to report that next month I will be changing from full-time to fill-in status at work. This means that I will likely only work 8-16 hours per week. The kids will be at home either with a family member (hopefully) or a sitter when I'm at work. NO MORE DAYCARE!!!! I have NEVER not worked full-time. I'm frightened to give up all the benefits that my job offers. I'm frightened that I won't be a great SAHM. I'm frightened that Kevin is going to feel overwhelmed with the burden of being the primary breadwinner. Financially, it is going to be beyond tight. Yet, the thought of being with my kids, who are growing up waaay too fast, and being able to go to every appointment or every field trip and have time to enjoy them is so incredibly exciting to me. The thought of being able to be there for M, to work with her more, to give her every opportunity she deserves is such a gift. E will be at 4K from 8-11:15 Mon-Thurs. That gives M and I a nice amount of time for daily therapy. I'm so looking forward to spending un-rushed time with both of my children. I saw this posted on another blog and it really describes how I feel (sorry, Honey, I know you hate poems).

I Took His Hand and Followed

Mrs. Roy L. Peifer

My dishes went unwashed today,
I didn't make the bed,
I took his hand and followed
Where his eager footsteps led.
Oh yes, we went adventuring,
My little son and I...
Exploring all the great outdoors
Beneath the summer sky
We waded in a crystal stream,
We wandered through a wood...
My kitchen wasn't swept today
But life was gay and good.
We found a cool, sun-dappled glade
And now my small son knows
How Mother Bunny hides her nest,
Where jack-in-the-pulpit grows.
We watched a robin feed her young,
We climbed a sunlit hill...
Saw cloud-sheep scamper through the sky,
We plucked a daffodil.
That my house was neglected,
That I didn't brush the stairs,
In twenty years, no one on earth
Will know, or even care.
But that I've helped my little boy
To noble manhood grow,
In twenty years, the whole wide world
May look and see and know.