Have you heard the song, "I Won't Give Up", by Jason Mraz? I think he wrote it for me and Owen. I haven't completely lost my mind, I do realize it is intended as a love song, but with just a few simple tweaks of wording, it could easily be my ode to Owen. Listen to it- I challenge you not to tear up.
Over the past few days, that is the mantra in our house. Owen is just a roller coaster. He has had a string of days with his typical irritability. It is exhausting. We are exhausted. Sometimes I wonder if he is being as bad as we think he is, or if our tolerance is just so skewed after 10 months of screaming, that we have nothing left to give. When he starts up, Pete and I just look at each other like, "You take him? What, it is my turn? Oh Owen..." Compound this with how sorry we feel for him...why has he been dealt such a terrible journey? When is it going to end?
We have successfully captured some of his irritability and I would say his quality of life is tremendously improved since last Fall, but there is still tremendous room for it to get better. He remains at the developmental state of approximately a 1 month old. He continues to have seizures. The positives are: we have seen smiles and even, when vigorously tickled, giggles. We never dreamed we would see Owen smile and it is a great sight- he uses his entire face- much like Jack Nickolson's Joker from Batman.
From a diagnosis standpoint, I feel lost. Is it really possible we will never know what is wrong with Owen? We are still waiting on the cholesterol test (yes, we are over a month now...does it really take that long to test for it??). When that comes back, assuming it is negative, what is next? His doctors are at a loss and have tested for everything that fits his profile. I am not a neurologist nor a geneticist, so I am stumped at this point. When we first received the news about our son, Pete and I both anticipated seeing a rapid decline in Owen. Through medication, we have been able to organize him and allow Owen to show us his personality. I am tremendously grateful for this because I will always truly know my little guy no matter what his future holds. I couldn't say that back when he was two months old.
But what does his future hold? I cannot stand the unknown. How do I plan for his future and the future of our family if it is just a giant question mark? We are doing our best to enjoy each day and be thankful for each memory we create with Owen by our side. He is growing, slowly, but he is getting bigger. At this point he still requires a tremendous amount of holding. In two years, am I going to be writing a blog about how I carry my two year old around the house because his intense irritability will not allow us to put him down? Will we have a chiropractor living in our house?
Owen desperately craves human contact and it often is the only thing that seems to calm him. It doesn't have to be his mom, it often just needs to be a warm body and soothing shushing. When we are out, I stare at kids in wheelchairs. Have you noticed them? There are a lot of sick little kids around. I stare for a different reason then others might stare. I am looking to see if these kids are happy. I just don't see how Owen will someday be pushed in a wheelchair independently and content. These children might not be happy in the true emotional sense, but they are by no means screaming and arching as I envision my little Irishman to do when put into his chair.
As long as Owen continues to fight, I will fight right along side him. My mission is to give him every positive experience he can have while he is with us, whether that is 10 more months or 10 more years. The details of how we can keep up the lifestyle we are living with Owen frightens me. What is the eventual toll going to be on me, Pete, and Ellie? On our marriage? I have no idea, probably not good if we continue living the way we are for years on end. It is very hard to see the light at the end of this tunnel. For now, I will just keep fighting for Owen, I won't give up.
Wednesday, June 27, 2012
Thursday, June 14, 2012
June
Owen has been enjoying a fabulous month. He has continued to make his presence known in our house. Just last night, I got up at 11:30pm because he woke me up. He was making so much noise I thought I should go and help Pete. When I got downstairs, I discovered Owen squawking away on the couch perfectly happy. In addition to his improving vocal abilities, he is also having a lot of fun playing. Here is what Owen has been up to:
There is a magic hour after Ellie goes to bed where it is just me, Owen, and Pete. This is one of my favorite times of the day. Over the past few weeks, he has just been happy hanging with us on the couch while we catch up on our day. This is a new favorite picture that Pete captured of me and Owen:
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| Entertaining us with some tunes |
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| Swinging high and loving it in our backyard! |
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| Showing off his artwork created on the microfiber of our couch |
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| Playing at the park |
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| Celebrating Memorial Day on our deck |
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| Quick snooze break while playing in his gym |
Last night, Owen and Pete helped our niece, Jillian, celebrate her installation into office of Rainbow. This is a group who dedicates their time to volunteering and raising money for charities. Jillian selected The Tiny Sparrow Foundation as the charity her group will be focusing on raising money for over the next few months. We are very proud of her. Here is a picture of Jill and Owen last night:
And this is a picture of Owen just plain being adorable. He is very good at it.
Thursday, May 31, 2012
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.
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.
Wednesday, May 16, 2012
Peaches and Smooches
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| Taking a nap on his new bean bag loaned to us from his OT, Christine |
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| Nuk break before his MRI |
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| Playing in his Little Room loaned to us from The Perkins School for the Blind |
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| 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... |
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| Enjoying a smooch and hug from Ellie |
Monday, May 7, 2012
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.
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.
Thursday, April 19, 2012
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.
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.
Monday, April 2, 2012
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.
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.
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