Issues

McKenna is plugging away in physical therapy, well not really plugging away, the girl barely moves a muscle but we are taking her every week just to kid ourselves that she is actually getting something out of it.

So today she resumed her usual, I'm not doing a thing here stance and the therapist decided we were going to push her limits a bit.  Mark went with her and I stayed with the boys and as we rounded the corner for our millionth lap around the building I saw McKenna heading down the hall on her little therapy bike crying her eyes out while pedaling.  Now, the rational part of me knows that sooner or later the girl does have to do some work and the therapists push-her-a-bit strategy is necessary but the irrational Mommy of the 2lb. 10oz. preemie who spent the first three months of her life crying in a NICU incubator wanted to give the physical therapist a little push of her own, take that stupid bike helmet off, unstrap her feet from the pedals and head out the door, never to return to that awful place again.

So I'm thinking I have issues (if you know me in real life or have been following me for long I'm sure you are laughing at the fact I'm saying this like it is a new thing) but really, I like her physical therapist and I know she wants the best for McKenna and I know McKenna needs to get stronger, but the minute I hear that little girl crying I flash right back to the days and days and days I spent helplessly watching her fight for her life in the NICU and I start having Ally McBeal-like visions of what should happen to whoever is making her cry.  (I hope the one person who watched that show besides me is reading this so 1 someone gets my visual.)

Ms. McKenna's first home

I'm not sure what the point of my ramblings are today other than that there are a lot of levels to being a mom.  Whether your kids are sick or healthy or preemies or angels, raising kids is not for the faint of heart or for the mildly delusional.

I am going to have to get myself and my case of post traumatic stress disorder together.

Either that or just go back to school to be a physical and occupational therapist, teacher and pediatrician so that I can get my kids through their first 18 years my way :)

Change, change, change

We have had lots of changes in our house lately and I have had a few requests for updates on various subjects so here we go...

Toddler beds:

We put the beds up.

They played.

McKenna repeated "don't want to sleep in a big girl bed" 3 million times.

Mark put her crib back up.

Nights are great but short, naps are nonexistent.

Yesterday I entered their room to find Parker climbing McKenna's crib while she had him in a headlock and he had her by the hair, both screaming themselves hoarse.

The sibling love I had always envisioned.

Parker in his big boy bed (railing followed the next day)

McKenna:

McKenna has been doing pretty well.  She has slowly rebounded from her health scare in the spring but has never returned back to full strength.  She goes to physical therapy weekly and has braces on her feet and ankles which she tolerates really well (the fact that they are pink helps immensely).  We have also noticed that whenever she is sick or overtired that her muscle weakness along with some OCDish behavior come back which concerns her doctors but at this point we are taking a little vacation from all of the medical tests.  

The poor girl has been through enough.

High school:

Ashlyn is doing the best that Ashlyn can.  The adjustment to the expectations of high school have been tough to say the least.  She goes to school each day trying her hardest and that is all I can ask for.  

In the meantime I will continue to dream about winning the lotto so that I can create my own school that  works for her and the many other kids with autism who struggle through their education.

Ashlyn on her way to scoring a well-deserved goal at her soccer game.

P.90x:

I am on week 4.  I love the program and have seen results really quickly BUT my exercise schedule depends on the fact that my children actually sleep (see "Toddler beds").

I may be on week 4 for a while.

Lastly, I put the kids in a Mommy & Me (& Me & Me) class and they did great.  I was thrilled to find a class that would even include Sawyer.  They all surprised me with how well they did and the teacher kept commenting on how well behaved they are.  They were only good because they were in shock by all of the activity (we don't get out much) but I took the compliment and ran.  I'm looking forward to their weeks to come in the class, hoping Parker and McKenna will come out of their shells a little bit and that Sawyer will stop eating the glue sticks.

The best picture I could get of the three of them on their first day of "school"

Craziness

To call the last week wild is an understatement.  

Wednesday morning, Mark called bright and early on his way to work (he never does this, in fear that he might wake us on a day that the kids decide to sleep later than the crack of dawn).  What is it that causes them to wake so early as soon as warm weather hits?  In the winter they will sleep until 7:30 or so but the minute it starts getting warmer the whole house is up by 6.  

Anyway, back to Mark's call... apparently, while he was driving he heard an extremely loud noise and his entire sunroof shattered and came crashing down on him.

He was not hurt, or so we thought, so he came home, changed out of his glass-filled clothing and took the van to work.  By mid-afternoon he noticed he was losing vision in one eye.  He headed to the ER, while I stayed home with the kids freaking out that he had some sort of head trauma.  

To make a long story short, after a night in the ER and two long days with an eye specialist, they finally found that he has a form of retinopathy caused by the pressure of the explosion of his sunroof.  Thank goodness he is fine and that laser surgery will hopefully correct the damage to his vision but can I just say that we are very tired of hearing "I have never heard of such a thing before" when it comes to things that happen to our little family.  Seriously, we have had one medical mystery after another for YEARS now and wouldn't mind just a few, normal, run-of-the-mill months.

Speaking of medical mysteries, I realize it has been ages since I have updated on McKenna.  She is doing better than she was after her initial illness in March but still has poor coordination and strength in her lower body.  She was fit for braces on her legs last week which I thought was going to be a hugely traumatic event but ultimately turned out to be an "everyone is fussing over my feet and showing me new shoes and I love it" appointment.  So her braces should be in this week and my fingers are crossed that she continues to enjoy them as much as she did when she tried them on.  Most likely I will be posting next week about the fights that have ensued over her new shoes since these days ANYTHING that someone has someone else wants.  At least if they fight I know a timeout will be had since punishing her siblings is McKenna's new talent.  I have caught her twice this week disciplining Parker and Ashlyn.  Here is her strategy in case anyone is looking for a new one:

McKenna (in a long drawn out tone) "No, you do not say that.  You have three seconds or you will go to time out.  ONE, TWO, THREE.  Now you go to time out until you are ready to say sorry."

We have used counting to three, time outs and sorries but not all together, I think I like her technique :)

Of course, this sweet little boy will never need a single time out...

Especially with such an innocent brother to look up to...

(He may look like he is part of some sort of strange toddler tribe but it's just the combination of fixing his own hair, lots of sunscreen and one of Daddy's tools.)

A Potty Story

At some point last night, when my hands were more than full and no one was wearing a diaper, Parker announced that he had to go potty.  As any mom who has cleaned more than her fair share of pee off the floor would do, I told him to RUN to the potty.  McKenna followed behind him to supervise as always and just as I was wondering if the little boy pee shield was up on the potty, McKenna came out to inform me very seriously that "Parker's pee pee did not go in the potty."

I finished diapering Sawyer and headed in the bathroom.  As I was cleaning a smaller than usual puddle and Parker was emptying the two drops of pee that did make it into the potty into the toilet I looked up at McKenna who concentrating on the whole scene with her hands on her hips and a wet stripe going down her dress from her chest to her knees.

Apparently she was in the line of fire.

I wish, wish, wish the camera was in reach for a picture but I just couldn't get to it.

Here is my picture for today but I had to cheat.  Today was not a good day.  My poor Sawyer was sick and miserable and the only time the doctor could see him was during our coveted naptime so everyone was either sick and crying or tired and crying ALL DAY LONG.  I kind of figured no one needed a sick baby/crabby toddler/frazzled mom picture today and found a cute one from the other day instead.

Keep us in your thoughts that the little sunglass-wearer does not get her brother's virus.  The last time she was sick was when everything went downhill and she lost so much coordination and strength.  She is in rehabilitation now but doctors are still trying to find a diagnosis and until they do we really don't know how her body will respond to another illness so I am hoping that we can keep her healthy!!!!

Big sister

A few people have asked about how McKenna is doing so I thought I would take a minute to give an update.  I guess the short answer is we really don't know how she is doing.  Her limp is not as pronounced as it used to be but she is still very uncoordinated and seems to fall for no reason ALL the time.  So I'm not sure what is better, limping or falling.  We are waiting to see a neuromuscular specialist and in the meantime her physical therapist is considering fitting her with leg braces to help stabilize her gait.  I dread the thought of trying to get my stubborn little peanut to wear any type of brace.  The ONLY way we will be able to pull it off is if she thinks they are some kind of fancy shoes.
Do they make orthopaedic devices in zebra print??

One more day

...of McKenna's trial of antibiotics and we have not seen any signs of improvement with her limping,

Not a single one.

If anything she is worse.  She seems to be doing all kinds of odd steps with her feet just to keep them both going in the same direction.

Ugh.

Late Friday I did talk with a wonderful doctor who offered to review her case with some of his colleagues who often treat rare disorders.  I spent the evening leaving messages with everyone she has seen thus far asking that they fax everything they have on McKenna to this physician.  Hold your breath for us that someone in the group comes up with something.

On a different note, all of these McKenna updates have left me seriously neglecting the cute pictures I have of the rest of the kids.  Here are a few I've been hanging on to...

The best little cheeks!

Yes, we let him in.  Sometimes :)

Sawyer and his Hawaiian girl out on the lake.

Two steps back

So we were starting to get our hopes up that whatever has been going on with McKenna was slowly going away and it was just going to be one of those weird things that we would never quite have an answer for.  Her coordination and strength were improving and the limp was still there but unless you knew to look for it you would barely notice it.  We thought we could just stick with OT and PT and take a break from our quest to find an answer.

Then the weekend came.

Saturday we thought we might be seeing things because she seemed to be limping more than not.

Sunday the limp was in full swing again and we were cringing as McKenna tried to keep up her usual pace.

Monday she woke up with a FEVER.  AGAIN.  The nervous pit in my stomach that I had for all of those weeks she was doing so poorly returned as well.

Tuesday more fever, more limping, decreased coordination, etc., etc.  We headed back to the pediatrician who was planning a trip to Children's Hospital for us but then found an ear infection as the source of her fever.  He has decided, as a last effort to avoid more tests, more hospitals, more unhappiness for my poor little McKenna, to try a strong course of antibiotics in hopes that it will clear up the ear infection and maybe some type of lingering infection that could be causing the limp.

No one is sure if this will work or not but we are hoping and praying it will.

Easter and updates

I have had a terrible time getting around to updating the blog this week.  

Here is the current McKenna update:

She had an MRI of her spine, thorax and abdomen on Friday and lots and lots of blood work ordered by the rheumatologist and the neurologist.  So far everything is coming back FINE!  We are thrilled the MRI came back okay.  I have been a nervous wreck since Friday, waiting to get the results.  Now we are just waiting for the remainder of the blood work and beginning an aggressive schedule of occupational and physical therapy to help McKenna get back to her old self regardless of what is causing all of her symptoms.  In the meantime she remains a medical mystery and this whole experience has left her completely scared of everything.  The poor thing is so afraid of getting poked and prodded that it is hard for her to do much of anything outside of the house right now.  I am hoping with some time away from all of the testing for a bit that she will start to get back to her old shy self instead of the new shy, paranoid, cries-if-someone-looks-at-her self.  

We had a great Easter at Nana and Papa's house.  I know I am biased but all of my kids looked great.  You will have to just imagine what Ashlyn looked like because believe it or not Ms. Teenager was not interested in dressing up or posing for many pictures, apparently her days of cute little Easter dresses are over :(

                                      

The closest we got to everyone looking at the camera

Showing his empty basket after his sister helped herself to everything he had already picked up.

Pretty, pretty

Sawyer was not a big fan of the grass which is why he is not sporting his usual grin.

LOVED their new bubblemakers from Nana and Papa and you can even see a little glimpse of Ms.Teenager blowing bubbles in their direction.

Tests, tests and more test

We are still trying to find an answer to why McKenna is limping.  We saw another new specialist today which means more new tests.  Poor McKenna has been through so much that she was already crying by the time we hit the waiting room.  It breaks my heart to know she has to go through more poking and prodding but I know we need to find an answer to help her get better.  She won't remember this in a few years, right??? 

We have been told that "no news is good news" in terms of her upcoming tests as they are testing for some very serious conditions.  Please keep us in your thoughts and cross your fingers that we do not receive any news over the Easter weekend.

I finally managed to upload a few pics from the last week too...

The kids passing the time with balloons during the 48 hour EEG.  

She managed to smile through it (most of the time).  I'm sure the usual antics of her brother helped to keep her mind off the test.

They also scored a 50's style diner to keep us all from going stir-crazy in the house.  Just in case you were wondering she still has her attitude and her sense of style and of course nonstop entertainment from her brother, whether she wants it or not.

Thanks to everyone for all of your love and support, I will try to update again soon!

Where is that stupid light??

Ugh, I never should have posted about seeing the light at the end of the tunnel.
Either someone shut off the light or this is a very long tunnel.

While McKenna's health has improved and she has gained some balance back she is limping horribly AGAIN.  After getting out of the hospital McKenna was off balance, uncoordinated and floppy with some tic-like movements but the limp that started all of this was gone.  Well, she woke up Saturday morning with the limp in full swing.  I think she is starting to hate walking.  She walks a little, tries something different, crawling or scooting or a funny little gallup... anything to keep her legs moving and get her where she wants to go.  She does not complain or call any attention to whatever in the world is going on with her legs though.  This is all just SO strange and it is driving me crazy to not have an answer.

In the meantime it is still life as usual in our house.

Sawyer has started crawling and, more amazingly, sleeping.  I can't remember the last time I actually slept through a full night.  How I missed sleep.

Ashlyn competed in her first Special Olympics swimming meet and won two second place medals and a third place medal.  We are so proud of her!  Unfortunately I was in the hospital with McKenna so could not watch her compete.  Thank goodness for grandparents and video cameras!

Parker is his same wild self.  He had a blast being spoiled by a variety of different people who kept him busy over the past two weeks.  Every day he goes through the list of names of people he hopes are coming to visit... Nana, Papa, Aunt Nancy, Aunt Marynan, Mamanda and Uncle Bet.  They all took a turn at chasing him while McKenna was in the hospital and we appreciate it so much.

Many thanks again for all of the love and support from everyone!

(I wanted to add some pictures to this post but they won't upload, hopefully I can add them later.)

Light at the End of the Tunnel?

I'm almost afraid to say it but I think I can finally see the light at the end of the tunnel.  McKenna has been steadily improving over the last few days and today is the first day that I feel like I can actually watch her play instead of hovering over her in fear of her falling at any moment.

Yesterday she finished a 48 hour brain wave study.  I have never been so relieved to have her wake up early, I could not wait to get all of the electrodes off of her head and disconnect her from her monitor.  Today we had a very long visit with the pediatrician while she went over all of the testing that has been done in and out of the hospital.  We will be starting physical therapy and are also going to see a rheumatologist while waiting for the results of her brain study.  The pediatrician also called me after we left her office with a possible lead on what McKenna may have.  It is called Sydenham's Chorea and the characteristics of the disorder sound very similar to what she is experiencing.

I am doing better with things now that we have a plan.  We were discharged from the hospital with no diagnosis or plan for rehabilitation so it has been a tough week.  The nurse at our doctor's office actually offered to buy me a bottle of wine after I cracked when she asked me how things were going.  Being back in the hospital with her after all she went through as an infant was so difficult.  As much as we would like a diagnosis, watching her go through all of these tests is heartbreaking.  I feel terrible that she is going through all of this and hate watching McKenna struggle.  We just hope that she will be able to return to the same little wild girl we had a few weeks ago and she definitely seems like she is on her way.

Many, many thanks to everyone for your kind words and to all of our friends and family who have helped so much over the past few weeks.  We could not get through this without you!

Update

McKenna is back home now.  She was admitted to the hospital last Friday after waking with a high fever.  Doctors found a mild case of pneumonia and were very concerned about the unexplained limping and loss of muscle strenth.  Our little trooper had a rough weekend in the hospital and went through many, many tests.  They ultimately discharged her once her fever was gone and her vitals were stable but we still have no answers as to why she is limping and has such decreased strength.  We spent the day today at the neurologist's office doing more tests and she is now home connected to all kinds of wires for a 48 hour brain wave study monitoring for seizures.  My poor little girl has been through so much and we are just hoping there is an answer soon.

We appreciate everyone's thoughts, messages of encouragement and support.  It is so nice to have McKenna home.  I would love nothing more than to be blogging about the crazy antics my toddlers got into today.  Hopefully I will be doing that again soon.

Update on McKenna

This is Jessica's friend, Rebecca. Jessica asked me to write here to inform you all that McKenna was admitted to the hospital on Friday. She has pneumonia and still decreasing muscle control and coordination. The doctors are doing a battery of tests and they've yet to come to a conclusion.

Mark and Jessica appreciate of your thoughts and prayers. They have been with McKenna and have limited computer access, but will try to keep everyone updated when they have new information.

Please keep the prayers coming for the Watson's!

Our Little Mystery

Our little McKenna is a walking, well limping, mystery right now.  McKenna was a 28 weeker and suffered a grade III hemorrhage on both sides of her brain shortly after birth so we have always been on the lookout for development problems but up until this point she has done great.

A little over a week ago McKenna woke up with a very noticeable limp.  She did not act like she was in pain and kept up with her brother as usual while limping along.  She was still jumping, climbing, running, the usual two year-old routine.  Over the course of the week she has continued limping but seems to be becoming less coordinated.  She is falling a lot and having trouble with things that are usually easy for her like climbing the stairs.  We have been to the pediatrician, an orthopedic specialist and in to the ER for a CAT scan and blood work with no answers.

Of course this whole limping incident has us analyzing everything else she is doing and we started thinking about a few other behaviors we have seen...

Over the past few months she has been freezing when she gets bumped or jarred, even slightly.  She will stay completely still until we go over to her and snap her out of it.  And she is shaky.  She has always been a little bit shaky and on the uncoordinated side but lately the shakiness has increased, even when she is doing simple tasks.

So with lots of tests under our belt and no answers we are waiting until our next appointment with a neurologist and hoping that she wakes up tomorrow walking like her normal, little butt-wiggling self.