Wordless Wednesday

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Miss Smarty Pants

Before Marissa was born, at about 20 weeks gestation, it was brought to our attention that she had an anomaly in her brain. The left ventricle was larger than it should be.  We were given several possible outcomes for this. From "it could turn out to have no effect on your baby" to "your baby could be severely mentally disabled".  And everything in between.  

All this to say that, from every early on, we have known that Marissa may be intellectually disabled.  When she was born, the enlarged ventricle took a back seat because it was discovered that she was missing part of her corpus callosum (the piece of the brain that connects the left and right sides and allows them to communicate with one another).  Interestingly enough, we were given the same speech as before about not knowing what effect, if any, this would have on her ability to learn and develop.  Some people with this brain anomaly have severe intellectual disabilities. Some people with this brain anomaly are only discovered to have it in an autopsy. These individuals led a "normal" life with no indications there was anything different with their brains.  

When we received this news, we ulitimately decided to treat her like we normally would and allow her to show us what effect, if any, this brain anomaly would have on her.  We decided not to label her because in doing so, we might unwittingly limit her potential.   We got her home from the hospital and went about our lives as normally as possible, dealing with her physical disabilities, watching and waiting for her to show us how smart she would be.  

As we watched her physically develop, her pediatrician noted that her head circumference was smaller than it should be.  He diagnosed her with Microcephaly, which is one more condition that would indicate the potential for intellectual disability.  Her pediatrician and some of her other doctors hae been baffled by the fact that, with all these factors combined, she is developing normal cognitive skills thus far.  

At 28 months old, she knows over 100 signs, can speak at least 50 words, maybe more, speaking about half of those words clearly.  While she is speech delayed, it is because she has the trach and was not able to tolerate her speaking valve until she was about one year old.  She didn't have a voice for the first year of her life, so she started developing speech later than normal.  She understands the concept behind the words and she does try to speak, she just can't always say them clearly, so this is a physical delay rather than mental.  She understands emotions and can convey them to others.  She helps us with certain tasks like getting the wipes and diaper when she needs a diaper change.  She can bring us an item we ask for, when she is not being stubborn!  She lets us know when she thinks she needs to be suctioned, she says "excuse me" after she burps, and she lets us know when she thinks she has pooped.  We have started potty training and the other day, she tooted, grabbed her booty and made a mad dash to go upstairs to the bathroom.  Nothing has "happened" on the potty yet, but she gets the concept.  She knows body parts and animals.  She will "read" her favorite books along with us and can sing along to her favorite songs.  And most recently, she learned how to count to five and is working on counting to ten!

Photo and video editing at www.OneTrueMedia.com

I hope you all don't think I am bragging too much.  I am not meaning to throw it in anyone's face.  I have never been one to compare my kid to anyone else's or think that she is better than someone else.  I am just so ecstatic that Marissa is showing us that the anomalies in her brain are not affecting her cognition thus far.  I am not going to take it for granted that my special needs daughter shows us everyday, in new ways, just how smart she really is.  

Praise God!!  :)

Dumb Games Boys Play

UPDATE AT END OF POST

My silly husband decided to make a wager with his co-workers back on Friday, July 10.  Now, before I go into what happened, let me tell you that Jeremy has not shaved his mustache or goatee in over 10 years.  Before that, the last time he had a completely smooth face was our wedding day.  I personally like his facial hair.  

Now, onto the story.

Some guys at his office who had facial hair for years were discussing shaving their faces as  an "I'm macho enough to do it, are you?" kind of thing.  There was one guy with mutton chops who was reluctant to shave them off.  So Jeremy chimed in and told the guy that if he came in Monday morning with a clean shaven face, Jeremy would bring his shaver to work the next day and shave his face in front of everyone.  He then waited until Sunday night, as we were turning in for the night, to tell me about his bright idea.  His last words of the day were "don't worry hon, the guy is really attached to his mutton chops, he'll never shave 'em".  Brilliant.

Monday rolled around and I completely forgot about his little wager.  We were sitting in the doctor's exam room waiting for the doc and trying to occupy a very hyper, very bouncy Marissa.  Out of the blue Jeremy said to me "oh, by the way, that guy I work with shaved his mutton chops".  It took me a minute to recall just what he was talking about.  As soon as I did, I glared at him and mock repeated back to him what he had said the night before about the guy never shaving his mutton chops off because he was so attached to them.  Just then, the doc walked in and our focus changed drastically.  Have I ever mentioned that Jeremy has the crappiest timing ever?  No?  Well, he does.  :)

So, Tuesday at work, Jeremy shaved his face for the first time in 10 1/2 years in front of all who cared to witness.  I was a little concerned that Marissa would freak out when she saw him with a clean face because he has had facial hair all her life.  Turns out, I had nothing to worry about.

The only thing she ever did to acknowledge his clean face was, periodically throughout the evening, she would reach up and caress his face with a slightly puzzled look.  That's it.  So I am glad to say that she didn't freak out.  Because I would have really hated to kick Jeremy out of the house for two weeks while his hair grew out enough so she wouldn't freak out.  :)

I decided that a clean shaven Jeremy reminds me of Ray Romano of "Everybody Loves Raymond".

So, I called him Ray for the rest of the evening.  Hopefully he is done playing silly little games with his friends.  :)

Daddy playing "Spin the Rissa"

So, what do you guys think?  Facial hair or no facial hair?

For the record, I think he looks good without facial hair, younger even.  I just prefer him with a mustache and goatee and so does he.  Another good reason for him to grow it back out? A majority of the women he works with thinks he looks better without it!  Gotta nip that in the bud NOW!!  Just kidding!!  ;)

He is in the process of growing it out and all will be right with the world soon!  :)

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I have a prayer request.  One of our little trach friends is supposed to be decannulated today.  His name is Milo and we just love this little guy.  

He is going in for a bronchoscopy today and if all looks well, he will come out of the OR as a face breather!!  Please keep him and his mom Janay in your prayers today.  Decannulation is a wonderful thing that all trach parents dream of but it can be very nerve wracking as well.  Please check his blog for updates and I will try to update when I know something also.

Thanks!

UPDATE:

Everyone stop by Milo's blog to see how today went.  Leave 'em a comment so they know you are out there and have been praying for them!  Show them lots of love!!

Discharged

From physical therapy that is.  I know, I couldn't believe it at first either!!

Last week, Marissa's physical therapist approached me with the idea of taking an extended break.  Her reasoning behind this is Marissa has hit her goals consistently and is developing well enough that there are no more immediate goals for the therapist to set.  Everything the therapist wanted her to accomplish by this age, she has accomplished!  Isn't that great?!?

Marissa has been getting physical therapy since she was about 5 days old.  While she was in the NICU, during the times she was not intubated or recovering from surgery, the PT department would send someone down to do massage, range of motion exercises and movements with Marissa.  Despite their efforts, when she came home, she was still a tiny little bundle of tightened muscles and ligaments.  She was wrapped up as tight as a rubber band ball.  That tends to happen when your world consists of only your 2 x 4 foot crib.  It also tends to happen when just about every touch you have had in your short little life is someone poking, prodding or sticking you.  Marissa would often recoil at the slightest touch because she thought she was going to be hurt.  

When she was discharged from the hospital, it took about a week and a half to set up in-home physical therapy through the agency.  Marissa has had the same physical therapist since early June, 2007.  The early therapy sessions consisted of the therapist doing light infant massage on Marissa.  She was very easily agitated and was very leery of anyone touching her.  Once the therapist gained Marissa's trust, she started working very slowly on Marissa's problem areas. The biggest one was the left side of her neck.  Marissa would scrunch up her left shoulder and bring it up to her ear.  Because of this, the left side of her neck was always tense and it was causing weakness in her trunk and left arm.  The therapist worked diligently to teach Marissa to release that left side.  It got so bad that the therapist talked to me about a TOT Collar.  As you can see, we really didn't want to go there if we didn't have to.

Finally, after a little over a year working on that issue, Marissa's neck was free and she no longer kinked it up.  Goal accomplished!

As you can see, she always had her head turned to the right with her left shoulder scrunched up to her ear.  Not good.

We were told to encourage her to look to the left by positioning things she was interested in on the left, like the TV or her toys or people who were talking to her.

From then on, every goal the therapist would set for Marissa, she would achieve by the next Plan of Care.  This included walking, running, kicking, kneeling, going from sitting to standing, jumping, climbing stairs by crawling and walking and finally, walking down the stairs with assistance.

So, now the plan is for Marissa to be discharged from PT and we will touch base with the therapist at the beginning of next year.  She has a feeling that by that point, Marissa may need to have maybe a session a month, just so we can make sure she is not regressing and to make sure she continues to hit her milestones.  Kind of like preventative maintenance.  If we feel that she is not doing well in between now and then, we can always call the therapist and she will pick Marissa right back up where she left off.  The therapist feels confident Marissa will take this change well and will not regress.  And after looking back at how far she has come and everything she has accomplished, so do Jeremy and I!!

I just wanted to post a couple of pictures showing everyone one of the pretty dresses our friends Elizabeth, Charles and Ashleigh got for Marissa.  Elizabeth, Jeremy and I are high school classmates.  We had a nice dinner a couple of weeks ago with Charles and Elizabeth and they gave Marissa two dresses for a late birthday present.  I'll have to take pics of the other dress soon.  As you can see, it is a great challenge for me to get Marissa to hold still for pictures anymore.  She is constantly on the go!

Thanks Elizabeth, Charles and Ashleigh!  The dresses are so cute on her!
This next series of pics demonstrates what I have to do to take non-blurry photos of Marissa now.  I hate to use the flash (I just think it makes everyone look fake and washed out).  So I took her outside so I could take pictures of her while she was moving and they would not be blurry.  She thought it was a fun game to watch me run to the other end of the patio and then chase after me.  :)

Swimming Again!

Photo and video editing at www.OneTrueMedia.com

Stepping Out of the Funk

I think I am finally snapping out of it and coming to grips with this. I have been feeling better and have even smiled a time or two! {Insert sarcasm here} I have had several one-on-one chats with The Number One Man Upstairs and He assures me He is in control. He knew all of this an eternity ago and we just have to trust in Him to guide us down this new path. I have been immensly touched and humbled beyond belief to read all of your messages of love and support and to hear how many of you have been speaking with the Big Man on our behalf. While I don't think I am quite ready to take on the monumental task of talking to docs, insurance companies, Medicaid, and organizing and arranging Dr. appointments, possible travel plans and accomodations just yet, I am ready to step out of the funk I have been in.

For those of you who may be wondering about a timeline, we are projecting that she will have surgery sometime next Spring, for several reasons.  First, she is not in danger and her health status has not changed, so this surgery is not an emergency.  Second, we don't want to put her in the hospital during the Fall or Winter months when she would be most vulnerable and exposed to germs and sickies for a non-emergency surgery.  Third, we would not be able to arrange a surgery of this magnitude before Fall arrives.  Depending on which surgery is done and if it is successful, she may be decannulated during the surgery or she might have to wait a few months to recover and then be decannulated.  Either way, we are cautiously hoping that around this time next year, she will be trach-free.  Keep in mind that we are only projecting and this timeline is only based on the limited information we have gathered so far, so it might not be accurate.  It could all happen a little sooner or much later.  We have not even started the preliminary research neccessary to get this all taken care of.  And, even though this is one of my biggest personal struggles, I am going to try not to focus on a timeline and try not to get my hopes up because I know how quickly it can all come crashing down.  Hence, the last couple of days.  And besides, it is God's timeline that we are working on, not our own.

Once again, I am reminded that we are very blessed in this situation.  There are so many other trach kids who will never be decannulated.  There are so many other parents who have had to say goodbye to their babies here on this earth and are left behind, waiting to be reunited with them in Heaven.  We are blessed beyond measure because Marissa is here with us, she is healthy and she has a great chance to be decannulated successfully.

And now, I feel the need to move on for the time being.  

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Jeremy and I were unable to procure a temporary child technician last weekend for our anniversary, (in other words, Auntie Chelle was at the lake with her friends all weekend and was not available to babysit), so we are going out to celebrate this Saturday.  We have decided to take a day trip up to Cripple Creek and try out the new Colorado gaming laws that went into effect a couple of weeks ago.  We are looking forward to some time away, even if it is only for a few hours.  Jeremy and I have already agreed that we are not allowed to talk about the latest development in the Marissa Saga, so it should be fun and relaxing.  I can't wait!!

On a final note, I'd like to share with you one more OT session Marissa had yesterday.  I only thought she had gotten really messy in the past with her shaving cream sensory routine, but this time, she did it up right!  Take a look:

I love this video because the look on her face makes me think she was wondering "how the heck did this happen?"  She looks so bewildered and is completely speechless.  Hilarious!!

This Sucks!

That is the way Alicia, Gavin's mom, described finding out Marissa will need major reconstructive surgery on her airway.  So simple, yet so appropriate.  THIS SUCKS!!!!!  Thanks Alicia for hitting the nail on the head so perfectly.

I have really been struggling over the last couple of days.  My face is breaking out, which it tends to do when I deal with great stress.  I didn't really break down and have a good cry until I read the blog of a little boy who had a Laryngotracheoplasty (LTP) to be able to get his trach out and I saw pictures of him post-op.  He was intubated, sedated and paralyzed.  He looked so peaceful and yet so pitiful at the same time.  I have seen Marissa and countless other kids intubated and post-op, in person and online, so I thought I was going crazy when the pictures of this little boy made me bawl like a baby.  In my mind, I saw Marissa lying there, intubated again, tubes and wires hooked up all over her. Helpless.  It just breaks my heart that someone is going to cut on my baby.  Again.

I think I am going through the Kubler-Ross model of the five stages of grief.  I have gone through denial, anger, bargaining, depression and acceptance several times since finding all this out on Monday.  Even though these stages are most applicable to death and dying, they can also apply to this situation.  And, in a way, I feel something has died.  The hope that Marissa would be able to avoid another major surgery and be able to get her trach out without complication or struggle. Just to be clear, I am not as disappointed about her not getting the trach out soon as I am with the realization that it will not happen without surgery.  We can wait as long as she needs us to, we just want to know that it can happen at all, if this makes any sense.

I am still too dazed and confused to go into any planning at this point.  I keep trying to and then just get overwhelmed by all the questions and unknowns, the "I'll have to check on that, or see if this is covered, and we'll have to make sure and do this" part of it all.  And I still have some big questions for Dr. E that just didn't come to my mind on Monday.  I am thankful that I have a sister who is a speech pathologist because she knows quite a bit about this.  She is going to help me in the near future to come up with questions that she would want to know the answers to and questions she thinks I may want to have answers to but don't know enough to ask.  Thanks Michelle!

Thank you all for loving on my family during this time.  Your prayers and messages of love and support, both on this blog and on Facebook, really mean so much, I just can not put it into words.  This blog and being able to reach out to others whom I have not yet met, but who are walking similar paths has been such a blessing to me.  It has really helped save my sanity.  I really see you all, not only as friends, but as an extension of my family.  You guys are the best!

Not Good News

A little backstory:

Marissa had her vocal chords scoped by Dr. E back when she was still his patient in Oct. 2007.  At that time, he diagnosed her with vocal chord paralysis.  This was pretty devastating for us because he did not seem hopeful about getting her trach out any time soon.  About a month later, we started seeing Dr. P.  Dr. E brought her into his practice because she is a pediatric ENT, thus the reason we started seeing her.  She scoped Marissa at the end of that year and said that her vocal chords were not paralyzed but rather she had vocal chord paresis.  This is some movement, but it is very limited.  She said that this was not the main concern with Marissa's airway, that it was more the tracheomalacia and the smaller lower jaw that needed to resolve.  We moved on from being so concerned about the paresis and went about our lives, thinking we just needed to give her time to resolve these issues on her own.

Today, Marissa was scoped again by Dr. E.  Turns out the squeak we have been hearing is the fact that her vocal chords have very little movement to them.  When she inhales, they only open a little and she has to breathe through not much more than a slit.  Damn.  He said that she will almost certainly need a major reconstructive surgery to be able to get the trach out.  Double Damn.  

He told us she will need one of three possible surgeries: 1)  Arytenoidectomy.  This is essentially where they would surgically remove an arytenoid cartilage so she could breathe without the trach.   2)  Posterior Cricoid Split.  3)  Posterior Laryngotracheoplasty.  (Stupid Blogger formatting!!)  These last two procedures are where they would take cartilage from her rib and graft it into her airway which would somehow make it stable enough to remove the trach.  I haven't done enough research on these to know exactly how this would work, but Dr. E felt pretty confident she will not get the trach out until something is surgically done/reconstructed.

So, Marissa will obviously not be decannulated (trach taken out for good) in the fall.  Dr. E did not seem comfortable doing this kind of surgery on someone as young and small as Marissa. Not that it can't be done, he is just used to doing it on teenagers and adults.  We will now need to see what Dr. P's outlook is on this and if she can do the procedure.  She is, by the way, on bedrest at the hospital.  Things are obviously serious enough that she and the babies need constant monitoring.  She is not expected to be back to work until later this year.  Your continued prayers for her and the babies is appreciated.  

We also need to look at possibly seeing the world renown Dr. C at Cincinnati Children's Hospital. He is the absolute authority on kiddos with problems like Marissa.   Hope and Ava, we might actually get to meet you!  :)  

At this point, the news is so fresh and it stings a lot.  The thought of putting Marissa through another major surgery is overwhelming and discouraging.  Not that we didn't know that this was a possiblity, in the backs of our minds.  Marissa has shown us anything is possible in her short little life, good or bad.  At least there is comfort in finally knowing why she is squeaking.  I think Jeremy and I just need to let it sink in and then we can move on to the planning stage.

Please keep us in your prayers as we process this new information and deal with deciding where to go next.  Thank you all.

Friday Fluff - N - Stuff

Just thought I would go over a few random things that are on my brain for the end of the week.

This Sunday, Jeremy and I will celebrate 12 years of marriage.  I can't believe it has been that long and yet sometimes it feels like it has been decades longer.  We have had some rough times as of late, but we are making it through, side by side.  We committed to each other, for better or worse, all those years ago and we meant it.  Little did we know what would lie in store for us down the road, but God blessed us with each other and that is how it will stay.  For better or worse.  God knew what He was doing when He put us together.  

I love you Jeremy, more now than ever before.  You are the greatest daddy to Marissa I could have ever hoped for and you still love me after everything we have been through.   Thank you for sticking it out with me, for better or worse.

Marissa and I have had a couple of big struggles lately.  First is the nap thing.  She is driving me over the edge on this one.  Every. Single. Day.  She just does not want to settle down and take a nap, at least not without a major fight.  She constantly moves to keep herself awake.  She plays.  She talks.  She moves some more.  I have to sit in the room with her until she falls asleep because, if I don't, she will stand up in her crib and NEVER go back down.  I have tested this and she has stood on her feet without even sitting down for two hours straight.  So I sit in the rocking chair in her room and at least she will lay down.  Then, she finally stops moving and lays perfectly still.  I can finally see my freedom.  She lays still for 5 minutes and then, like a cruel, sadistic prison warden who dangles the keys in front of a weary prisoner's face, she sits up and starts playing again.  Tricky tricky this little one is.  She goes through this cycle at least once, if not twice more and then either falls asleep for good or I give up on nap time, unhook her from her machines and leave her in her crib for some "quiet play time".  Which is actually more like "mommy needs to regain her sanity time".  I just spent two hours in this ritual.  And it's not like she doesn't need a nap.  Even with quiet time but no nap, she will get grumpy around 4:30 and be almost unbearable until it is bedtime.  I have tried every trick in the book.  From a little friend named Mr. Ben A. Dryl (I gave her a teaspoon just before nap time on Wed. just to get her back into the routine of taking a nap.  She would not nap on Mon and Tue.  Don't worry, I am not going to make drugging her a habit!) to driving around in a warm car, to soft music and cuddle time before putting her to bed.  I've tried it all.  I am hoping and praying that this is just a phase and she will get back into the habit of taking naps again soon. 

Our second big struggle is her trach cap.  In the last couple of days, she will not leave it on.  She is not bothered by it, quite the contrary.  She is doing very well with it and is even starting to cry better with it on.  She just knows it bugs us to no end when she takes it off and wings it across the room.  This kid has got a heckuva arm on her!!  Just last night, about 10 minutes before bedtime, she took it off and threw it with a great deal of force at the closet.  Jeremy and I both saw and heard it and it looked and sounded like it bounced off the closet doors and went under the bed.  It was not under the bed.  Or anywhere in the area of the bed.  Or anywhere else in the room.  15 minutes later, after emptying the closet and shaking all our shoes out, Jeremy finally found the cap in the back corner of the closet.  Then, he set the cap on the bed, about three feet from where she was sitting and went in the other room to get a diaper.  I was sitting on the bed with her, but obviously not paying close enough attention because she crawled over to the cap, picked it up off the bed and threw it across the room!!!  AAAGGGHHH!!  It wasn't even on her trach!!!

We have tried scolding her, putting her in time out and ignoring her and just putting it back on, which we know is the right approach.  But nothing works!!  I know she is just challenging us and seeing where her boundaries are and that ignoring her bad behavior and not rewarding her with the attention she wants is the right way, but damn she is aggravating!!  

Monday is Marissa's ENT appointment with Dr. E, Dr. P's replacement.  I think he is going to scope her through her stoma without her trach in place while she is awake and agitated so he can see if there is still some tracheomalacia present.  I am hoping he will also scope down through her nose with her trach in place and capped so she will show him what her airway is doing when she is capped and agitated.  I am not sure I am prepared for the results no matter which way it goes but we do need answers.  Dr. E tends to be a little more cautious than Dr. P, so my guess is that we will hear from him that she should not be decannulated until next year.  I should not jump to conclusions but I think this is my way of preparing myself.

I want to leave you for the weekend on an up note, so here are a few pictures from the last couple of weeks of our sweet and funny Rissa Roo:

Look Out American Idol, Here She Comes!!

OK, maybe not quite yet but...

Please pay no attention to the crazy lady singing horribly in the video. This really weird lady walked into my house and started singing with Marissa. And since Marissa won't sing at all unless someone is singing with her, I just let her do it and then kicked her out as soon as the song was over. Man, she was bad... and really weird!! ;)

One of my favorite parts is the line in the song that goes "you're low-fat, well I'm working on that" and Marissa sings "fat fat fat".   :)

I have been trying for a while to get this on video and I still wish I had a better example of how Marissa sings with her music. Just last night we were singing, err, I mean she and that crazy, no-talent, bad singing weird lady were singing, and Jeremy was upstairs working on something. Of course I didn't have the camera on and she was singing her heart out to this same song. I would hear a little chuckle from Jeremy every now and then. She just clams up and gets really distracted when the camera comes out.

In fact, here is the video I shot before that first one and you can see what I am talking about. I know this is not a unique problem but I just wish I could catch it on video better.

Ahhh, my little entertainer.  She has big things in store for her, I can just feel it!

Happy 4th of July!!

We had a wonderful time yesterday celebrating the birth of our nation with the help of some great friends, great food and even a few fireworks.  We went to Ben and Brandi's house and Marissa had a great time.  

She preferred to play upstairs where it was a little more quiet

as opposed to downstairs in the toy room where things were pretty loud and rambunctious.

She talked with Miss Brandi

Then, as she was being fed, she decided it would be a good idea to throw her trach cap in Mama's plate of food (which was amazing, by the way ~ Ben makes the best pulled pork I have ever tasted, and I've had some good pulled pork!!!).

Just look at that guilty face (and the trach sans cap!!)

Chatting it up with Ben and Brandi's son Tommy.  Cute little guy!  Unfortunately, I did not get any pictures of their daughter Grace, who is not only beautiful, but such a sweet little girl.

Ben and Tommy watching fireworks

We were a little worried about how Marissa would handle the fireworks.  We thought she might be a little scared...

I guess we didn't have anything to worry about!!  

We hope you all had a safe and happy 4th of July!

Amen!

I came across this on another blog and thought it was not only beautifully written but it so perfectly describes how I feel being Marissa's mom.

A Bill of Rights For Parents of Kids With Special Needs 

We, the parents, in order to form a more perfect union, establish justice, insure tranquility (and sanity) and promote the general welfare of our families, do ordain and establish this Bill of Rights.

* We have the right to expect our kids to be seen for who they are as individuals, not as labels or diagnoses.

* We have a right to trust our instincts about our kids and realize that experts don't always know best.

* We have a right to ignore the remarks, questions and stares and not give explanations or excuses for why our children are the way they are.

* We have a right to choose alternative therapies for our kids.

* We have a right to roll our eyes straight out of our heads when we encounter certain mothers who brag nonstop that their kids are the smartest students/best athletes ever.

* We have a right to wonder “What if…” every so often.

* We have a right to play aimlessly with our children. Not for therapeutic or educational purposes—just for fun.

* We have a right to blast Bruce Springsteen/Tom Petty/Any Rocker, down a glass of Pinot Grigio, get a pedicure, go out with the girls or do all of the aforementioned at once if that's what it takes to avoid burnout.

* We have a right to react to people’s ignorance in whatever way we feel necessary.

* We have a right to not always have our child be the poster child for his/her disability and some days be just a child.

* We have a right to go through the grieving process and realize we may never quite be "over it."

* We have the right to give our kids chores. Even better if they can learn to make breakfast in bed for us.

* We have a right to stretch the truth when we fail to do the exercises the therapist asked us to do this week because we were too darn tired or overwhelmed.

* We have a right to have yet more Pinot Grigio

* We have a right to fire any doctor or therapist who's negative, unsupportive or who generally says suck-y things.

* We have a right to tell family and friends that everything may not be OK—at least not how they mean it, anyway.

* We have a right to hope for an empty playground so we don’t have to look into another child’s eyes and answer the question, “What’s wrong with him?”

* We have a right to bawl on the way back from the playground, the birthday party, the mall or anyplace where our children’s challenges become glaringly obvious in the face of all the other kids doing their typical-development things.

* We have the right to give our children consequences for their behavior. They may be “special” but they can still be a royal pain in the ass.

* We have a right to take a break from Googling therapies, procedures, medicine and treatments for our kids to research upcoming concerts, exotic teas or anything not related to our child’s disabilities.

* We have a right to talk about how great our kids are when people don’t get it.

* We have the right to not always behave as inspirational icons who never complain or gripe about the sometimes awful realities of raising a child with special needs.

* We have a right to expect quality services for our children not just when they’re infants, preschoolers and elementary school age, but when they’re in older grades and adults, too.

* We have a right to adequate funding for those services and to not have to kick, scream or endure a wait for them.

* We have a right to get tired of people saying, as they give that sympathy stare, "I don't know how you do it."

* We have a right to wish that sometimes things could be easier.

* We have a right to cheer like crazy anytime our children amaze us—or weep like lunatics.

* We have a right to push, push and push some more to make sure our children are treated fairly by the world.

For a printable copy, e-mail LoveThatMax@gmail.com.

Written by Ellen @ To The Max whose son has Cerebral Palsy.

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I updated my prayer request post, so if you are curious, go back and check.  Thanks again!

Prayer Requests

UPDATED:

Lots of things going on in our life right now that could use your prayers.

Please pray that Jeremy passes a very important test today. This particular test is a requirement of his job. He does have several times to take the test but his employer will only reimburse for one time and the cost is $260. Jeremy is super intelligent and he knows his job like the back of his hand, he is just not so good at taking tests.

I just heard from Jeremy. He passed the test!!! Out of a possible 900 points, he got 885. So he didn't just pass the test, he blew it out of the water!!! Praise God! Thanks for your prayers!

Please pray that I am able to get Marissa out of this new trend of not taking naps. She gets really crabby in the late afternoon and evening if she does not take her nap. It is bad for her, bad for me, bad for us.

Marissa finally took her first nap since Sunday.  Not quite sure what today holds but keep praying!

Please pray for Marissa's Ear Nose and Throat doctor (Dr. P). She is pregnant with twins and has already been on bedrest. She came back to work for a couple of months but is back on bedrest for the remainder of her pregnancy. She is due around the end of August, so for her to be out for good this early is scary. While it is very rare for any pregnancy involving multiples to go to full term, I am worried about her and the babies.

If and when I hear anything about Dr. P and the babies, I'll be sure to update you all.  I was able to talk to her awesome Medical Assistant yesterday and asked her to let Dr. P know that we were thinking of her and praying for her.

Related to the last request, please pray that Marissa's medical care will not suffer while her doctor is out for the next few months. Basically, the timing couldn't be worse. Even though we may have hit some hurdles in regards to Marissa's airway, we are still really trying to work toward getting Marissa's trach out by the beginning of fall. We haven't been told "no" yet, so we are trying to stay positive.  We were scheduled to go see Dr. P on July 7 and she was going to scope Marissa to get a better picture of what is going on with her airway. Now, Marissa's chart has been given to a doctor who has never seen her and does not know her. Normally, with most patients, this would not be a problem. But Marissa's case is quite complex and she is best served by seeing someone who is familiar with her and her history. I had asked Dr. P if we could have Marissa's case transferred to a particular doctor (Dr. E) during her maternity leave and she said she thought that was best. This did not happen for some reason. Dr. E is the one who actually did her tracheotomy and who cared for her until we transferred her care to Dr. P in Nov '07. He knows Marissa and what she was like from the day she was born. Please pray that when I get ahold of her doctor's office that we can have her chart transferred to Dr. E with no problem and that he can help Marissa on her path to getting the trach out until Dr. P returns.

I spoke with Dr. P's MA, Miss M, yesterday and she grumbled that she had put a sticky note on the first page of Marissa's chart stating that it should be given to Dr. E when Dr. P left and no one paid attention to it.  :)  She got us scheduled to see Dr. E on July 13.  She also told me she will ask Dr. P to call Dr. E and fill him in on our plans for the appointment as well as Marissa's immediate future.

Thank you friends.  God hears our prayers!

Oh, and if you missed the previous post, make sure you stop and take a look.  There is just something about little muddy piggies that makes me smile.  :)