EEG Number Three

As I type this blog, I am on my last day of a ten day vacation.  It has been wonderful.  I should mention that I only work two days a week, so having ten days off in a row really isn't necessary, but I have enjoyed every one of them.  My mom has been visiting us since the end of April and will be leaving this Sunday.  Having her extra set of helping hands in the house has provided time for some chores and lots of fun.  We took the kids to the ocean, a few parks, and many visits to our neighbor's house- which features a horse, goat, and chickies.  Our biggest accomplishment was done in four days, Ellie is potty trained!  Hurray!

After a wonderful Memorial Day weekend, it was back to business.  Owen has been having staring spells since the beginning of March.  They last seconds and for a long time we only noticed a few a week.  In the past two weeks, they have dramatically increased.  I was pretty sure we were witnessing absence seizures.  The initial plan was to do another EEG in August when he goes back into Boston for his next check up, but Owen's neurologist decided we should do it now since they have increased.  Owen has been fairly irritable lately (not much of a surprise) and seizures can make that worse.  They can also affect sleep, which Owen does not find to be an important use of his time.

As I have mentioned before, Owen loves EEGs.  The twenty or so sensors they attach to his head is his version of a massage and he cooperated willingly as Mary attached them.  Mary helped with Owen's EEG in December (when he was an inpatient) so she remembered what an unhappy little boy he was.  It is fun to show off my new and improved Owen.   He even graced her with a few smiles.  About five minutes into the EEG, while Mary and I were yakking about purses, Owen had one of his staring spells.  She watched him, stared intently at her computer screen, and then said she was going to go page Owen's neurologist.  Go OWEN!  Finally, EEG number three captured a seizure!  It actually captured quiet a few since he is having them in clusters.  We are starting a new anti-seizure medication today as well as keeping him on the one he currently takes.

In other news, Owen does not have FOXG1.  This was the Rhetts-varient disease we tested for in March. The results came back a week after his MRI.  Now that I know he doesn't have it, I can officially say, thank goodness!  I don't like any of the diseases they are testing him for, but that one seems particularly awful.  We are still awaiting the results of a cholesterol disease which we should have sometime in the next few weeks.

Peaches and Smooches

Taking a nap on his new bean bag loaned to us from his OT, Christine

Nuk break before his MRI

Playing in his Little Room loaned to us from The Perkins School for the Blind

We are in more of a taste testing process rather then actual eating.  Owen so far does not like  apples, peaches, or bananas. Maybe we will try some veggies...

Enjoying a smooch and hug from Ellie

Six Month MRI

Last Thursday was our big trip into Children's Floating Hospital for Owen's six-month MRI.  In the days leading up to the appointment, I was very anxious and incredibly distracted.  For anyone who I interacted with during that time, I apologize.  I have no idea what we talked about because my mind was only focused on one thing.  Has it progressed?

Sadly, it has. Thursday morning started for me at 2am when I woke up to Owen screaming his high-pitched neuro cry.  He has been doing that a lot again lately and I got up to help Pete out.  Owen screamed in my arms from 2am until 5am when he finally fell asleep.  It is so difficult to watch your child in such distress.

In general, it just wasn't a great morning.  We hit traffic heading into Boston and were 20 minutes late for our appointment, an MRI machine was broken and Owen was about an hour and a half late getting into the machine, and he pulled out his IV while waiting for his turn.  After the MRI was completed, Owen had more blood drawn and also another lumbar puncture while sedated.  Then we met with his geneticist who did an exam on Owen.  She suggested a new test to run on Owen for a fairly common genetic disorder.  Many of the markers for it sound like Owen and we will be awaiting those results some time in June.

Owen's chromosomal tests have come back completely normal, all of his mitochondrial tests are normal, and we are just waiting on the result of the variant-Rhetts test which should be arriving any day now.  The most significant portion of the day was reviewing Owen's MRI with his neurologist.  We were able to look at the images taken in November and December of 2011 and compare them to the current MRI.  The progression of the disease of the white matter of his brain was obvious to our untrained eyes.

We feel satisfied with the appointment.  It wasn't wonderful news, but it was confirmation that we are on the right path with Owen.  We are doing everything we can to keep him comfortable and happy.  Loving him every day and trying to enjoy each moment with him.

An Exciting Two Weeks

Owen continues to do well.  This past week we have experienced some minor setbacks from the new and improved Owen we had been enjoying since March.  Based on his coughing, we assume he has a cold, and that means Owen's less desirable habits (not eating or sleeping) have returned.  On the positive side, Owen and Pete are able to stay up late and catch all the overtime minutes the Bruins are playing.

Next Wednesday, my mom (aka Meme) is returning for a month.  We are all very eager to have her back in the house.  Owen gets in some splendid snuggle time with his Mammie (Pete's mom) twice a week so this will be a bonus for him.  The following Saturday, is Ellie's 2nd birthday.  He will be partying alongside her at a very fun music class.   After all of the celebration of next week, we will be getting down to business.

Owen has another MRI scheduled for May 3rd.  Pete and I are very eager to see what it shows and what Dr. T thinks of it.  We were incredibly frustrated by the lack of information we received after his last MRI in December.  This time we are more realistic with our expectations and will take any new information about Owen with eager ears.  We are also awaiting test results from three different disease categories.  Leukodystrophy is still in the mix, but we are also exploring a variant of Rhett's Syndrome, chromosomal defects, and another mitochondrial disease.  All of these are due back in early May, so fingers crossed, we will be learning more about our little guy soon.

Doing Great

It has been a few weeks since I updated the blog because we have been so busy.  The important news is that Owen is doing great!  Last week he officially graduated from Hospice.  We will miss our twice weekly visits from MaryLou, his nurse, but we are very happy to have a healthy(ish) boy who doesn't need to be on Hospice!

Owen's overall temperament has been improving weekly.  We see frequent smiles, he will giggle when we tickle him, and he turns his head in the direction of my voice when I walk in the room.  The other day, I came home from work and he was sitting contentedly on our kitchen island while Pete and Ellie prepped dinner.  I started talking to Ellie and he immediately started to fuss.  Pete turned to calm him and he didn't settle down until I came over to kiss him and talk in his ear.  He for sure knows his Momma!

One of my new favorite photos was captured in the past two weeks.  We purchased a stroller for Owen to be used in the house, a wheelchair alternative, for the next few years.  Owen isn't loving it, but we seem to be having longer successful periods the more we put him in it.  The other morning, I had Owen in it and Ellie insisted on helping me by strollering Owen around in the kitchen.  She had a blast and Owen was on the ride of his life.

Be sure to notice crazy hair his big sister is sporting.  Hopefully, Owen was enjoying this as much as she was!

Perkins School for the Blind has been doing weekly visits with Owen. We are very excited to gain perspective on Owen's vision status and how we can help to maximize the sight he may have.  Last Friday a Little House was dropped off for Owen's playing pleasure.  I will attach a picture of it later, but he loves it!  Both Pete and I felt confident that he was getting some visual stimulation while playing in it.

The other big event keeping us busy this past weekend was a visit from our great friends, BJ and Jenny.  They joined us from Oklahoma with their 23 month old, Silas, and their 2 month old, George.  It was a busy house, but we had a great time catching up!  Owen was on his best behavior and really enjoyed entertaining his house guests.  He made a trip to the park, the ocean, and Hodgies (our yummy ice cream stand).  We were having so much fun, the only picture I could find taken was of Ellie giving George (who was happily test driving Owen's nap nanny) a hug.  We miss the Potters already and are planning a visit to Oklahoma next fall.

Owen has also been doing a bit better with his sleeping.  We are now getting 5 hour stretches which are wonderful!  He is a seven month old, so we could have used these about five months ago, but will take the hours gladly.  Here is a picture of him demonstrating just how sweet he is when sleeping.

The Past Two Weeks

The past two weeks have been eventful for our family and Owen, here is a quick recap of what we have been up to:

Owen developed a pretty nasty cold with symptoms starting on February 28th.  Those of you who are paying attention will know that Owen was born on Pete's birthday and diagnosed on my Dad's birthday.  I now have a new fear and dread for important birthdays because I am convinced that we are going to lose Owen on one of them.  February 28th is my birthday, and while he survived the day just fine, he did continue to get sicker as the days passed.  At his worst point, his cold had moved into his lungs, which had us very frightened.  Owen is an impressively strong little boy, and a fighter.  He managed to cough and cough and cough and clear out those lungs all by himself!  Two weeks later, he still has a terrible cough, but his lungs are clear and he is improving.  And now I have many days before I have to dread my birthday again.  Here is to getting past April 28th, Ellie's birthday!

During the worst part of his illness, we had a photographer come to our house and take pictures of our family.  The Tiny Sparrow Foundation is a non-profit foundation that provides professional photos, free of charge, to families with children suffering from life-threatening illnesses.  A pretty amazing gift, and one that we will cherish forever.  Here is the link to a musical montage of the photos they took.  Sadly, Owen was super sick that day and we didn't get any of him smiling, but there are some fabulous dimples hiding in those sweet cheeks.


http://tinysparrowfoundation.org/?p=1904



The low of the past two weeks, is how Owen has been doing overall.  We have increased his medication because we were seeing the Owen of a few months ago returning.  The heartbreaking screaming, head thrashing, uncontrolled body arching, and overall irritability.  With the higher dose of medication, he is calmer again, but it is just so sad.  This morning he woke me up by letting out the most terrible ear piercing scream along with an arch.  After about 5 seconds, his body relaxed and he drifted back to sleep.  He did this again 3 more times before finally waking up about an hour later.  It is so painful to watch him like this.  He eats very little, is medicated around the clock with increasingly high doses, and still seems to have tremendous moments of pain and discomfort.  I find myself asking over and over, "Is there no mercy for this baby boy?"  Why does he have to suffer like this?  What is the point?  I love him so dearly and the calm and peaceful moments we have with Owen are amazing.  He is so sweet and cuddles his body into yours when you hold him.  But is he living? I think Owen is merely existing.

The thought of Owen dying is terrible.  I just cannot imagine life without him, nor do I want to.  He fills my life with such joy, but my life already has wonderful things in it that provide me with joy.  My husband and Ellie are two amazing blessings.  I want Owen's life to be filled with joy.  I know that whatever comes next for Owen is his time to shine.  Peace, comfort, and love are the best I can do for him in this life, but he deserves so much more.

Life Without Meme

A week and a half ago, my mom finally returned to Minnesota after spending almost 6 months living with us. I was terrified to see her go and incredibly thankful she stayed as long as she did. The original plan was to have her come out to help us the month following Owen's birth. She extended her stay into mid-October because my " colicky " baby was tough to handle. When she finally did leave, I spent two and a half weeks with Ellie and Owen on my own during the day, and felt like I was drowning. My two babies are only 16 month apart. Pile on the challenges of Owen (which at the time we didn't know existed) and I felt like such a failure as a mother. I know plenty of people who have babies close together and manage just fine. Anyway, Owen was admitted to the hospital about 2.5 weeks after she left and my mom returned at the beginning of November to help us when we brought our sick little guy home. November, December, January, most of February, that is a long time to be living out of your suitcase! Now she is back home, and we miss her a lot, but I am sure my dad is glad to have her back!

Here is the good news, we are doing well without her. The days at home with Ellie and Owen, dare I say it, are fun! Ellie is good entertainment and Owen is such a snuggler! Medication has finally been able to calm him and his days are no longer spent screaming his head off. Instead, I have a constant side kick who is doing a great job helping me build up my bicep in just one arm. Two soft cheeks to smooch, available at every moment. A belly ready of tickling during every diaper change. Life is good.

Ellie has her own baby that she attends to while I am assisting mine. She dresses it in Owen's clothes, it wears his diapers, and does pretty much everything Owen does. Her baby is a bit more independent. She can put it down, she forgets to feed it for hours on end, and it sits quietly on its own while she plays. My baby is a bit more demanding, but is also much sweeter.

We miss having Meme in the house. Ellie gave her that name about mid-January after trying out Grammy, Ya-ya, Eh, and a few other noises directed at my mom. Meme was an amazing help to us. She is what kept me from completely falling apart during the first few months while the reality of my baby boy's life rocked me over and over like unrelenting waves. I wish she was still here, but I also love how much we are succeeding with her gone.

I really feel like Owen is hitting his stride. He seems so attune to the people around him. He is happy, he is eating, and he is tremendously loved.