An Infant Stroke Survivor: Updates on Noah

Happy 2nd Birthday, Noah!

2011-06-24T08:00:00.022-04:00

Happy birthday, Noah! In your short life, you have overcome more challenges than most people face in their lifetime. You continue to impress and amaze us with your steadfast recovery.

A special thank you to all of you who continue to check our blog. You have our deepest, heartfelt appreciation for your support over the past two years.

A Silver Lining

2011-05-14T20:16:00.004-04:00

Today, Hannah (our 3.5 year old daughter), insisted we remove her training wheels from her bike. Within about 10 minutes, she was riding unassisted down our street. It was a proud moment for her and for us, as parents, to watch her reach this momentous childhood milestone.

This joyful event provided a silver lining in what was an otherwise somber day. Sadly, today one of the families within my stroke email listserv had to say goodbye to their son after a catastrophic complication following brain surgery to treat his epilepsy. Although I do not know the family personally, they were particularly active on the listserv and gave much needed support to the other members, myself included. Their loss is profound and I cannot help but to feel deep sorrow for their entire family. They were all in my thoughts today and I will continue to hope they find some peace after such a devastating loss.

Their tremendous loss serves as an important reminder that tragedy can strike at anytime and the joyous occasions, such as Hannah's first bike ride without training wheels, must be celebrated. As always, her determination and strong-willed personality continues to serve as a great example for Noah.

We are truly lucky.

May is Pediatric Stroke Awareness Month

2011-05-06T13:08:00.007-04:00

May is Infant and Pediatric Stroke Awareness Month. Many people wrongfully believe that strokes can only occur in adulthood. Actually, strokes occur at the highest rate in infants who are younger than 1 month old – about 1 in 4,000 live births. For children 1 to 18 years old, strokes occur in 11 out of 100,000 children. Strokes are fatal in 20 to 40 percent of children.

Over the last decade, there has been a revolution in stroke care for adults, with the advent of special stroke units and evolving treatments. Similar advances have not been seen in the treatment of childhood stroke. No randomized, clinical trials for acute treatment or secondary prevention of stroke in newborns or children have taken place to date. As a parent of a child who survived an in utero stroke, it is painfully frustrating that infant and childhood stroke research continues to be a neglected area by the medical community. Due to this lack of knowledge, many babies are undiagnosed or misdiagnosed. In many instances, primary use of an arm or hand is incorrectly attributed to normal hand preference. Delays in crawling and walking are wrongly attributed to “lateness.” Sadly, many do not get the critical early therapy needed to mitigate the effects of stroke. These effects include, but are not limited to, delays in gross motor development, tightness or restricted movement in legs and arms, and/or language delays.

This month, in honor of Noah and the thousands of other infant and pediatric stroke survivors, please spread the word that yes, infants can have strokes, too!

*Information for this post was obtained from the Children's Hemiplegia and Stroke Association (for more information, please visit: www.chasa.org).

Happy Easter!

2011-04-24T21:36:00.002-04:00

Noah and Hannah had a great Easter with family and friends. As many of you know, Noah has developed a love of basketball, so his favorite gift this Easter was a real basketball that he can now use when he plays his "basketball hoop teams" (as he calls it). He has spent many hours shooting hoops and has gotten quite good.

Wishing everyone a happy spring!

"School"

2011-04-10T21:40:00.005-04:00

This past week, Noah started a program run by early intervention that meets once a week for two hours. He calls it his 'school'. Of course, since he is only 21 months old, it is not really school, but he takes great pride in calling it such. I think, in part, because he can now go to "school" like his big sister. Noah had a great time his first day. He was particularly excited about his new backpack. Even though it is almost as big as he is, he insisted on carrying it himself, just like the big kids.

Noah also had his tonsils and adenoids removed a few weeks ago due to severe obstructive sleep apnea (unrelated to his stroke). Given how young he is, we were worried about going forward with the surgery, but his breathing was horrible, particularly at night. Like every other challenge he has faced in his short life, he coped with the surgery well. After two nights in the hospital and two weeks of recovery, it is great to see him back to his normal, hilarious self. We are hopeful that he will continue to remain a happy, healthy toddler.

A Special Thank You

2011-03-06T09:37:00.001-05:00

We created this blog immediately following Noah's diagnosis as a way to update our friends and family about Noah's progress. When he was an infant, it was too difficult to repeat the details of his diagnosis and questionable prognosis. At the time, I never could have imagined how this blog would evolve. Over the past 20 months, I have been fortunate to receive many emails from parents of stroke survivors who have found Noah's blog after searching for information about infant strokes on the internet. The touching emails that I have received from other moms and dads have motivated me to keep the blog going.

To the parents who have contacted me with a child who has just been diagnosed, I am so thankful that Noah's story can provide a bit of hope, in what can otherwise be a seemingly hopeless time. I am heartbroken each time I receive an email from the parent of a newly diagnosed child--But I am thankful that this blog has served to help some parents as they begin this difficult journey. To the parents of older children who have reached out to me, I thank you for sharing your story and providing me with hope for my son's future.

We would also like to thank all of those friends, family and strangers who continue to check in on Noah's progress. Much to our amazement, there have been over 11,000 visits to our blog. We are so thankful to everyone for the tremendous support we have received. We appreciate your continued thoughts and prayers for our family.

Counting...to 13!

2011-02-06T17:09:00.000-05:00

Here is a video of Noah counting to 13. At 19 months-old, Noah can count, recite the alphabet and identify some shapes and colors. Of course, we are thrilled to see this type of cognitive and language development, especially since his stroke affected the language center of his brain. Thankfully, Noah's speech and cognitive abilities are on track for his age.

His recovery continues to amaze and impress us everyday!

Wii

2011-01-15T21:02:00.009-05:00

Just like any typical 18-month old, Noah is eager to get his hands on anything that has buttons, lights-up, rolls or spins. So, it is no surprise that he is very interested in playing Wii. His interest is due, in part, because he gets a chance to hold the remotes (or "motes" as he calls them). Although he is still learning the concepts of the games, we are happy to encourage his excitement for the Wii, as it is a great two-handed activity. Noah has also developed a fascination for our iPod Touch. He happily carries it around and navigates his way through the applications. In fact, he has figured out how to turn it on and find his favorite Elmo video without any assistance. Although we still focus most of our time on more traditional activities like books, puzzles, music, crafts, etc., it is nice to take a break once in a while to see the excitement on Noah's face when he plays Wii with his dad and sister or finds his favorite video on the iPod.

As someone who is not technologically savvy, it is remarkable for me to see how quickly he is able to develop a proficiency for devices like the Wii and the iPod. Pretty soon, he will be teaching me -- something I never could have dreamed of after his diagnosis.

I know there are other families with children who have survived brain injuries who have found many benefits from these new devices. It is wonderful that this new technology can provide positive, therapeutic assistance and serve people who are perhaps beyond the manufacturer's intended audience.

Merry Christmas

2010-12-26T14:12:00.001-05:00

Merry Christmas! Here are a few pictures from our holiday. Both kids had a great Christmas. A few of Noah's favorite gifts are his remote controlled spider (see picture at top right); his bouncing ball that lights up when he throws it; and his bike (as you can see from the picture to the left, he is quite a dare-devil!). We certainly have much to be thankful for this Christmas.

Wishing everyone the joys of the holiday season!

Language Development

2010-11-19T19:13:00.012-05:00

Noah's speech continues to develop at a rapid pace. At 16 months old, he consistently uses approximately 100 words (maybe more) and imitates just about every word that he hears. He is starting to put two words together (i.e. "ball up" and "daddy sit"), although it is not consistent enough for me to report that he is speaking in two word sentences just yet. Along with his amazing language development, he is also beginning to identify some colors and shapes. We are so thankful that his language and cognitive skills are right on track.

As I have stated in previous posts, we feel that the more we push Noah now, the less therapy he may need in the future. Although Noah is not speech delayed, we have increased his speech therapy sessions to once a week. The additional speech therapy sessions would not be possible without the help of our wonderful team of early intervention therapists. We are so thankful for all of their efforts to help us.

Thank you all for continuing to check-in on Noah's progress. Knowing that there is a community of people who care about Noah's development has definitely helped his remarkable recovery.

Happy Halloween!

2010-10-31T19:27:00.003-04:00

Update on Broken Arm and Repeat MRI

2010-10-25T21:52:00.002-04:00

Noah's broken elbow is healing nicely. He has been in a fiberglass blue cast for the past few weeks. He had follow-up ex-rays last week and the bone has healed, but the cast will remain on until next week as a protective measure. Since new bone has formed, there is an increased risk of another break. Thankfully, the cast has not slowed him down a bit. The forced use of his right arm/hand has been the best therapy for him. I am anxious to see if he uses his right hand more equally once the cast is removed.

Noah was scheduled for a repeat MRI at Boston Children's this morning. We were always very reluctant about repeating a MRI, since he is doing so well right now. After all that he has been through, we do not want to put him through additional unnecessary procedures or stress. After much debate, we decided not to go forward with a repeat MRI. Although this was a tough decision for us, we are confident and comfortable with our choice. Right now, it is not medically necessary.

For now, we look forward to continuing Noah's excellent therapy program, lead by our great team of therapists and doctors. We remain committed to providing Noah with as much therapy as possible, in order to ensure the best outcome for his future.

Broken Elbow

2010-10-06T21:57:00.002-04:00

Just when I thought life could not get any more stressful, Noah fell during his gym class yesterday and broke his elbow. It is a minor fracture, but will likely require him to be in a splint for about six weeks. Thankfully, the injury occurred to his left (unaffected) elbow. The attached picture is of him eating dinner last night after returning from the ER. His elbow is immobilized with a fiberglass splint and covered with an ace bandage.

Ironically, a few weeks ago we started constraining his "good" left arm for about an hour each day to minimize the subtle preference he has for his left hand. Now, he is forced to use his "bad" right arm/hand exclusively until his splint comes off. In some ways, his broken elbow is a blessing in disguise.

Noah's stroke has put incidents like this into perspective. A broken elbow, although painful, is really not a big deal in the grand scheme of things. It can be fixed. As I waited in the ER yesterday, I couldn't help but smile about how lucky we are to have a child who is able to be injured in a mainstream toddler gym class. Although it is horrible that he broke his elbow, we are so fortunate that he is able to play, run, climb and keep up with his peers. Unfortunately, sometimes kids get hurt. I never thought we would be so lucky.

Happy Birthday to Big Sister, Hannah!

2010-09-13T13:11:00.013-04:00

Today is Hannah's 3rd birthday. Time has flown-by, especially this past year. At 21 months-old, Hannah seemed like just a baby when Noah was born and we received his stroke diagnosis. She emerges from this year a 'big-girl', having had to endure so much more than the average sibling. She has been involved with every therapy appointment Noah has ever had--by now, hundreds of hours. Noah's numerous doctors appointments have also taken time away from Hannah in ways I could never imagine before his diagnosis. It is so much more than any toddler should have to endure.

Hannah has helped us all in so many ways. In retrospect, it was Hannah who got our whole family through the darkest of times immediately following Noah's diagnosis. We all had to pull it together for her sake. At times, it was seemingly impossible, but I am not sure we would have gotten through it without her. More importantly, the gains that Noah has derived from having Hannah as a big-sister are innumerable. Already Noah has benefited from trying to keep up with Hannah's spirited personality and extraordinarily high energy. She is the most critical component of Noah's therapy and recovery. I am immensely grateful for her presence in our lives.

Reality Check

2010-09-01T20:53:00.001-04:00

Yesterday was Noah's follow-up appointment at the Boston Children's Stroke Clinic. This appointment comes just a month after Noah's fantastic one-year early intervention evaluation, so we were hopeful going into the appointment that there would be no surprises about Noah's progress. Thankfully, the neurologist and the therapists that evaluated Noah think that he is doing great--but, they also reminded us that this is just the beginning of his journey as a stroke survivor and, unfortunately, there are still many unknowns and much more work ahead.

The team at the stroke clinic believes that the more therapy Noah receives now, the less he will need in the future. I could not agree more. Based on the recommendations that we received yesterday, we are planning to increase the amount of speech and occupational therapy Noah receives. Although he currently does not have any delays, our hope is to keep him developmentally on-track.

In addition, we are starting a modified constraint program with Noah. This means that for 1-2 hours each day, we will constrain his "good" arm and force him to practice his fine motor skills with his right/affected arm. We have decided to pursue this type of therapy to attempt to decrease the slight preference he has developed for his left hand (we have learned that a hand preference should not be apparent until about three years old). The team at the stroke clinic believes that a constraint program will help decrease the subtle differences between his two hands.

The appointment yesterday was a stark reminder that even though he presents like a typical 14-month old boy, he has sustained a significant brain injury and there is still a great deal of work to be done. We must be more diligent than ever to ensure the best outcome for his future.

Article About Infant Stroke in Parents Magazine

2010-08-08T20:40:00.007-04:00

For those of you interested in reading more stories about infant stroke survivors, the September issue of Parents Magazine features an article about a 4-year-old boy who survived an in utero stroke. Thankfully, the boy has made a full recovery. His story gives us hope that Noah will continue to reach all of his developmental milestones on-time. To read the story, please click here.

I could not resist posting this picture of Noah climbing the slide in our backyard. His t-shirt says it all!

One-Year Early Intervention Evaluation

2010-08-03T13:49:00.009-04:00

Noah had his one-year early intervention evaluation today. During the evaluation, Noah was tested by all of his therapists to determine the age level of his physical skills and cognitive abilities.

We are thrilled that Noah exceeded his age range in every category! In fact, he scored between 20-23 months for object performance, social skills, logic and reasoning. Overall, his abilities match those of an 18 month-old, 5 months ahead of his actual age.

We are profoundly grateful and amazed everyday by his remarkable recovery.

Utensils

2010-07-24T08:04:00.000-04:00

About a month ago, we began encouraging Noah to use forks and spoons at every meal. Although it has made for messier mealtimes, his skills have really improved over the past month. Every morning, he demands his "poon" with his cheerios. Interestingly, he actually prefers to hold his spoon with his right hand.

He is so excited to be a "big kid" at the table, like his sister. It is great to see him so proud of himself!

A New Trick

2010-07-09T16:16:00.000-04:00

Over the past several weeks, Noah's walking skills have dramatically improved. Although he still chooses to crawl occasionally, he is almost at the point where he is walking all of the time.

One of Noah's new tricks is to put small bits of food (raisins, blueberries, etc.) onto his sippy cup straw and then put the straw into his mouth--getting both a drink and a piece of food at the same time. What makes this new trick remarkable is that he is able to manipulate such small pieces of food onto the tip of a straw with his right hand (see attached picture). One year ago, we were not sure if he would ever have any function of his right hand--so, to see that he has developed such amazing fine motor skills on the right side is wonderful.

Happy First Birthday!

2010-06-24T19:24:00.000-04:00

Noah is one today! It is truly a celebration for our whole family--we have all survived what has to be one of the toughest years of our lives.

Noah has come so far in a year--we are very proud of all that he has accomplished!

First Steps!

2010-06-17T20:36:00.000-04:00

Noah started taking independent steps last week! He is only able to take about 3-4 steps at a time, but I am sure within the next few weeks he will gain the skill and confidence necessary to walk with more consistency. We are very excited for him to reach this next great milestone!

NICU Party and More Follow-Up Appointments at Boston Children's Hospital

2010-06-08T22:55:00.000-04:00

Last weekend, we attended the annual NICU Graduation Party at the hospital where Noah was treated after his diagnosis. It was so wonderful to see the NICU nurses who cared for Noah. The support and compassion of the nurses, doctors and staff during our NICU stay is something that I will never forget. All of their support helped us get through the most difficult time in our lives--and for that I am truly thankful.

Last week, Noah had a physical and occupational therapy evaluation at Boston Children's Hospital to assess his fine and gross motor skills. Thankfully, just like the early intervention therapists that treat Noah on a weekly basis, the therapists at Boston Children's do not believe that he will face any significant physical problems as a result of the stroke. Noah also had an audiology examination last week. It was a relief to discover that his ears/hearing was not impacted by the stroke--everything is perfect.

After almost an entire year of tremendous heartbreak, unimaginable worry and more doctors' appointments than I can count, I feel like I can finally take a breath (albeit small) and begin to relax about his physical development. There are still many unknowns, but for now none of his doctors or therapists have any concerns about his physical or cognitive growth. I continue to be in awe of the capability of the infant brain to recover from such a significant trauma. We are truly lucky.

Vacation Pictures

2010-06-05T20:16:00.007-04:00

Ophthalmology Follow-Up

2010-05-28T19:00:00.000-04:00

Noah had a follow-up appointment with his ophthalmologist at Boston Children's Hospital today. Although his first eye exam was about six months ago, he was too young for the doctors to give us a definitive report about his eye function. Thankfully, after today's exam, the doctors are confident that Noah's eyes are functioning normally. It was a tremendous relief to hear that Noah's eyes have not been affected by the stroke. We are thrilled to have one less thing to worry about!

Learning

2010-05-16T22:03:00.002-04:00

Noah's understanding of words and language grows everyday. Now, along with encouraging his physical growth, we have introduced additional ways to stimulate language development--including a flashcard board (designed by our occupational therapist). He is doing a great job learning to identify simple pictures (cat, dog, train, etc.). Much of this early learning stage involves lots of repetition. Thankfully, Hannah has been interested in helping her brother learn some of these new words.

We continue to be amazed and impressed by both of our children. We are in awe of their remarkable growth and development.

Swimming Again and Mother's Day

2010-05-09T20:38:00.009-04:00

Noah started swim class again this past week. This is his second time taking the class, which is offered by our early intervention program. Noah really loves the pool--and, now that he is a little older, he also seems to be more interested in interacting with the other kids.

I am happy that swimming is starting back up again, since we have officially stopped therapeutic horseback riding, at least for now. We tried several times, but Noah is just too afraid to be up on the horse. The owner/therapist at the farm suggested that Noah try again in about 6 months. Right now, he is just a little too young.

I have attached a picture from our Mother's Day outing today at the children's museum. Wishing all of you moms out there a very happy Mother's Day!

First Words

2010-05-03T13:05:00.000-04:00

"Noah, where is the cat?" Noah points to the cat.
"Noah, where is the ball?" Noah crawls to the ball and picks it up.
"Noah, where are Mommy's toes?" Noah grabs my toes.

These are just a few examples of some of Noah's new receptive language skills. In addition to clapping and waving "bye-bye" on cue, he now is able to identify about ten words, and seems to be saying something that resembles the word "ball" when he picks up and plays with a ball. This is another monumental milestone for Noah, since the language center of his brain was damaged by the stroke. Although these first signs of receptive language are wonderful, it does not mean that he will not have any trouble with language. Unfortunately, we have to wait and see how his skills continue to progress. For now, the fact that he understands a handful of words at 10-months old is tremendous and is a great foundation for language development.

Childhood Stroke Awareness Day/Month

2010-05-01T20:38:00.000-04:00

May 1st is National Childhood Stroke Awareness Day and the start of Childhood Stroke Awareness Month. Before Noah was born, I was unaware that children and infants could have strokes--sometimes even before birth, like in Noah's case. The statistics show that 1/4000 babies and 1/8300 children will be affected by stroke.

Thankfully, Noah has done amazingly well. Although we still have a long journey ahead of us, Noah has reached all of his developmental milestones on time. This month, to honor Noah and all babies who have suffered strokes, please take the time to educate others that infants and children can have strokes. Education is critical to early diagnosis and recovery.

Therapeutic Horseback Riding

2010-04-25T22:14:00.000-04:00

In our continued effort to be as proactive as possible with Noah's recovery, Noah started therapeutic horseback riding this week. Therapeutic riding provides an excellent opportunity to combine many different therapies in one concise session. I was hopeful that riding could be a beneficial addition to Noah's therapy schedule. Unfortunately, he was not very happy to be on the horse (see picture below). Although all of the therapists were wonderful, he spent most of the session very frightened and in distress (I have to remind myself that he is only 10 months old and riding a horse can be scary even for some adults). We are going to try a few more sessions, but if he continues to protest, we will likely revisit the idea when he is a little older.

This week also marked Noah's 10-month birthday. He is definitely no longer an infant and resembles more of a toddler than a baby. We are so proud of all he has accomplished!

Climbing Stairs

2010-04-18T14:22:00.008-04:00

Noah climbed the stairs by himself yesterday (with me close behind him, of course). He has been trying to follow his big sister up the stairs for a couple of weeks and yesterday he was finally able to crawl up the stairs after her. When he made it to the top, he was so proud of his accomplishment!

As of last week, there have been over 5,000 visits to Noah's blog. Kevin and I are humbled by the number of people who check-in on Noah's progress. At first, we created this blog to help keep friends and family updated on Noah's diagnosis. We never could have imagined the outpouring of support from people all around the world--many of whom are parents of infant stroke survivors. It has been a wonderful way to connect with people. We thank all of you for your continuing support for Noah and our entire family!

Receptive Language and Hand Preference

2010-04-11T21:18:00.000-04:00

Since Noah's stroke damaged the language center of his brain, we have always been worried about the development of language - Specifically, about his comprehension of language (receptive language). This past week, Noah confirmed that he is beginning to understand what we are saying to him--he now waves "bye-bye" and claps his hands when prompted with both verbal and non-verbal cues. These first few indications are all wonderful signs that he is developmentally right on track.

Noah is also continuing to make great physical progress. His balance is improving and he has begun to "cruise" around furniture. Although he has great function in his right (affected) hand, Noah has developed a definite preference for his left hand when performing fine motor tasks (picking-up small items like cheerios, etc.). Babies Noah's age should not have a strong preference for either hand. Although his therapists are not concerned, I think it is important to be proactive and encourage him to practice fine motor tasks with his right hand. So, at mealtime, I have begun to put a glove over his left hand, which forces him to use his right hand the whole time. My hope is that we will begin to see him using his right hand for fine motor tasks with the same frequency as his left hand.

He continues to be a joyful baby with a wonderful sense of humor -- always smiling and laughing -- we are truly lucky.

Happy Easter!

2010-04-04T20:27:00.003-04:00

Wishing everyone a happy Easter! Here are some recent pictures of Noah enjoying the spring.

Nine Months

2010-03-28T21:36:00.003-04:00

Noah had his 9-month appointment with his pediatrician this week. As part of the standard 9-month visit, Noah was weighed and measured--he is long and very lean. His pediatrician is not at all concerned about his weight--his thin physique is likely due to his recent increased mobility. Nevertheless, I am going to do my best to fatten him up a bit!

Noah had another good week. Along with continuing to pull himself up onto everything, he is beginning to stand independently for a few seconds at a time. He is still a long way from walking, but it is wonderful to see his consistent progress.

Happy Spring!

2010-03-21T20:44:00.004-04:00

Yesterday marked the long-awaited return of spring. We are so thankful that, after a seemingly endless winter, Noah has emerged stronger than we ever thought possible. Although there are still many unknowns, we are fortunate to begin the spring reassured by all of Noah's positive development.

Happy spring!

Pediatric Stroke on Good Morning America

2010-03-18T20:41:00.005-04:00

I know many of you who check the blog also have children who have suffered a stroke, so I always feel compelled to post links to news articles that I come across regarding pediatric and infant strokes. Today, Good Morning America featured a story about a 7 year old girl who recently suffered a stroke.

For those of you interested in reading the story, please click here. I truly appreciate the media coverage on this largely ignored medical topic.

On a much, much lighter note, I have attached a picture of Noah putting his new tooth to good use!

A Tooth (finally!)

2010-03-15T21:56:00.000-04:00

Noah continued to make great progress this week. He has now been crawling for over a month and, as anticipated, weight bearing on his hands and knees has increased the strength of his affected hand. Thankfully, he already has great use of his right (affected) hand-- his strength and fine motor skills will only continue to improve with therapy. The benefits of therapy are truly amazing. I cannot speak more highly of our state’s early intervention program and the services that are available to our family.

Noah first tooth is finally coming in! It seems like he has been teething for months, so I am happy to finally see one poke through his gums. Even with the discomfort of teething, Noah continues to be a joyful, smiling baby--we are truly lucky.

Final Test Results

2010-03-07T19:56:00.007-05:00

We received the results from Boston Children's hematology regarding Noah's final round of blood tests. Thankfully, all of his tests were normal and we now know, without a doubt, that he is at no further risk of another stroke. The results reconfirm that the clot that caused his stroke came from my placenta, something that we never could have predicted or prevented. I am happy that he will not need any further blood work and we can finally close the hematological chapter.

This past week, Noah and Hannah enjoyed playing outside in the somewhat warmer weather. We are all looking forward to spring!

8 Months Old

2010-02-28T14:35:00.010-05:00

This past week marked Noah's 8-month birthday. Thankfully, he is doing exceptionally well and his recovery continues to amaze us.

Noah is mastering his crawling skills and getting faster everyday! The attached picture is of Noah crawling through our tunnel--a new favorite activity.

For those of you interested, the current issue of Stroke Connection Magazine features a cover story about infant strokes. Of course, I am thrilled to see more coverage and awareness of infant and pediatric strokes. Please click here to read the article.

More Great Progress

2010-02-21T20:48:00.003-05:00

Noah is keeping us on our toes! He is becoming a faster crawler and is pulling himself up onto everything--it is great to watch his curiosity evolve.

Noah's fine motor skills on his right (affected) hand are also improving. This past week, Noah began picking-up cheerios and putting them in his mouth with his right hand. All of this great progress is further proof that his therapy and hard work is paying off.

Thank you all again for continuing to check-in on Noah and our family!

Valentine's Day

2010-02-14T14:58:00.007-05:00

Noah continued to improve his crawling skills this week. Although he still has not mastered his new moves, he is getting more stable and a little faster. He is also beginning to pull himself up onto everything -- It seems like now that he knows he can crawl, all he wants to do is stand!

We are trying to quickly move away from pureed baby foods and introduce Noah to a variety of "real" food with different tastes and textures. We have learned that the exposure to different foods will help with oral muscular and language development.

As you can see from the pictures, he is having fun learning to eat!

Wishing you all a Happy Valentine's Day!

Crawling

2010-02-07T20:34:00.007-05:00

Well, it is official--Noah is crawling! Seven months ago, I wasn't sure if he would ever be mobile--we prepared ourselves for the worst. Tonight, Noah crawled on his hands and knees across our family room floor. We are thrilled that he has reached another physical milestone on time.

I was unaware of how critically important the crawling stage is for babies, until we began researching infant development after Noah's diagnosis. We have learned that crawling not only strengthens the muscles in the hands (which ultimately helps with fine motor skills), but it also helps infants develop cognitive abilities. Since this is such a critical developmental step, we will try to keep him crawling for as long as possible.

We continue to be amazed by Noah's progress!

Boston Children's Hospital Stroke Clinic

2010-01-29T22:37:00.009-05:00

To ensure Noah is continuing to receive the best treatment possible, we took him to Boston Children's Hospital Stroke Clinic this week. There, a team of doctors performed a comprehensive examination of Noah. All of the doctors were very impressed with how well he is doing. According to the neurologist, Noah's recovery is remarkable because, based on the size and location of his stroke, he should not have functional use of his right arm and hand--and, thankfully, he has great use of both. As the neurologist was sharing this information with us, as if on cue, Noah grabbed his stethoscope with his right hand--as if to say, "I'll show you just how well I can use my hand!" It was a great moment.

The hematologist we met with reconfirmed that Noah's stroke could not have been prevented. He believes that it is very common for clots to break off from the placenta and enter the baby via the umbilical cord. Thankfully, most of the time, the clots do not cause any harm. In fact, there is only a 1/4000 chance that a clot will make it to the brain, causing a stroke. He indicated that a clot the size of a grain of sand caused the damage to Noah's brain. A grain of sand. I cannot believe something so small has dramatically altered the course of our lives. It is just another stark reminder that the human body is vulnerable and sometimes, even the smallest things, can cause the most harm.

Noah's visit to the stroke clinic reconfirmed that all of our hard work is paying off. The constant, daily therapy since he was in the NICU seems to have helped Noah gain use of his arm and hand. It was also a reminder that this is just the beginning of our journey and there is still more challenging work ahead.

NY Times Article & Today Show Video

2010-01-24T20:54:00.001-05:00

Last week, the New York Times featured an article about a young boy who suffered an ischemic stroke due to a clot, which is similar to what happened to Noah. Thankfully, the boy in the article has recovered very well. The article brings much needed attention to childhood stroke survivors. Unfortunately, many people, even some in the medical community, do not know strokes can occur in infants and children. If you are interested in reading the story, please click here. This story was also featured on the Today Show-click here for the video.

Noah continues to look great. He has been working hard everyday to improve his strength and mobility. Everything that he does during the day has a therapeutic purpose. Thankfully for him, much of his therapy involves fun activities, like playing on the floor with his sister. It is amazing to watch him get stronger each day. We are truly lucky.

Behavioral Health Follow-Up

2010-01-17T21:31:00.006-05:00

Noah had a follow-up appointment with his behavioral health pediatrician this week. Thankfully, she is in agreement with Noah's other doctors that he looks great and is developing right on track. Of course, as with any child, things can change so she will be closely monitoring his development.

Noah is getting stronger each day. He is beginning to pull himself up on his hands and knees--a sure sign that he will be crawling soon. In the meantime, as you can see from the picture, his "army crawl" is allowing him to reach any toy he desires. We are beginning to see Noah and Hannah squabble over toys. It is wonderful to witness such "normal" sibling altercations--I will never take it for granted.

Thank you all for continuing to monitor Noah's progress!

On the Move!

2010-01-10T20:48:00.006-05:00

This past week, Noah continued to improve his "army crawl" (pulling himself forward on his belly) and he is now moving around quite a bit. He has learned to very swiftly and easily move off of his mat and "army crawl" across the room. He is no longer content to be a spectator. Rather, now that he knows he is able to move with ease, he wants to be on the floor, in the action (usually moving in the direction of his sister or the cat!). It is wonderful to watch him move with such strength. We continue to be amazed by his progress!

Happy New Year!

2010-01-01T10:28:00.001-05:00

Although 2009 was a tough year, we are amazed everyday by Noah's remarkable progress. We remain cautiously optimistic for what awaits our family in 2010.

Wishing everyone a happy, healthy new year!!

Christmas

2009-12-25T21:12:00.011-05:00

Noah turned 6 months old on Christmas Eve. He gave us the best Christmas gift--beginning to sit up independently! Although he is sometimes a bit wobbly, he is now able to sit unassisted for long stretches of time. Thankfully, this is another physical milestone he has reached on time.

This Christmas, I couldn't help but think back to 6 months ago when we first received Noah's stroke diagnosis. The first few weeks of his life were the darkest, most hopeless time of our lives. Although there are still many uncertainties, we are slowly emerging out of the darkness of the past 6 months into a more hopeful time. There is much to be thankful for this holiday season.

Thank you all again for you thoughts and prayers for Noah and our family. Merry Christmas!

Solid Food

2009-12-20T22:01:00.006-05:00

Noah had his first taste of solid food yesterday--homemade apple sauce. Lately he has been really interested in what we are eating (staring and grabbing at our food), so we figured it was time for him to give it a try. As you can see in the picture, he really enjoyed it!

Happy eating!

Six Month Follow-Up (Part II)

2009-12-17T20:40:00.008-05:00

Noah had his six-month early intervention evaluation today. All of his therapists were here this morning to assess his developmental progress thus far. Our therapy team conducted a series of tests to determine his motor skills, cognitive ability and language development. All of the tests reconfirmed that Noah is developmentally right on track.

Some of Noah's highest scores were for his social development--he is always very interested in people and the world around him. Plus, he is such a happy baby--such a joy, even after all he has gone through in his short life.

We are thrilled with the positive evaluations from all of Noah's doctors and therapists this past week. Given the magnitude of Noah's brain injury, we are extremely fortunate for his remarkable progress toward recovery.

Six-Month Follow-up (Part I)

2009-12-14T19:12:00.000-05:00

Last week, Noah had his 6-month follow-up with our local neurologist and we also had an appointment with a neurologist at Boston Children's Epilepsy Department. Once again, Noah had great evaluations by both doctors.

Noah's local neurologist thinks that he looks fantastic! In fact, he could not find any physical or neurological differences between Noah's left or right (affected) side. As of right now, both sides are functioning equally (and normally). He also told us that, based on how great Noah looks right now, he may not have any cognitive impairment, either--But, we will not have a complete picture until Noah is closer to 18 months old.

Also last week, Noah had an appointment at Boston Children’s Epilepsy Department. The good news is that the neurologist thought Noah's prognosis is excellent. He explained that, because he is moving his limbs equally, Noah's brain has definitely rewired the area of the brain that was damaged by the stroke. The bad news is that, because Noah suffered a brain injury as an infant, he has an increased risk of having more seizures in his lifetime. It is something that will always be in the back of our minds--but we hope that he is one of the lucky perinatal stroke survivors that do not develop seizures. Only time will tell.

We are also excited to report that a few days ago Noah started saying "dada." The use of consonant sounds is the next step in language development--So we are thrilled that he continues to make progress with his language (especially since one of the areas of Noah’s brain that was damaged by his stroke controls language development). We hope he continues to make great sounds—it is music to our ears!

Noah is also doing a great job learning to "crawl" around on his belly--he is not up on his hands and knees yet, but he is starting to slowly push and pull with his arms and legs. He has definitely learned that he is able to reach toys and other interesting objects. Of course, this is great news to all of us—except for maybe Hannah, whose toys are now in danger of being taken by Noah!

Overall, this was another great week of progress and doctors’ evaluations--Definitely an early Christmas gift for all of us!

More Pictures

2009-12-06T21:22:00.007-05:00

Since there is not much new to report this week, I am posting a couple more pictures of Noah using his right hand in ways I never thought would be possible. The picture on the left is Noah helping us hang candy canes on our Christmas tree. The picture on the right is Noah in his swing holding a hanging toy fish with his right hand.
Before Noah was born, these were activities we, as parents, took for granted. Now, we appreciate everything that he does with his right hand--no matter how small they may seem. He continues to make us proud!

Giving Thanks

2009-11-29T21:42:00.002-05:00

On this weekend after Thanksgiving, I would, once again, like to thank everyone for keeping Noah and our family in your thoughts and prayers. Knowing that we have such great support has made this transition in our lives a bit easier and for that I am thankful.

It is also important for us to give thanks for all of the gifts that Noah has given us, even in his short life. He has certainly taught us that nothing in life can be taken for granted and to appreciate each day--there are no guarantees for the future.

Noah had a great first Thanksgiving. He seemed very interested in his big sister's turkey dinner--so we will likely be introducing him to solid food very soon.

I hope you all had a wonderful Thanksgiving!

Ophthalmologist

2009-11-24T16:05:00.012-05:00

We took Noah to Boston Children's Hospital today for an appointment with an ophthalmologist. Thankfully, the occasional variation in his eyes is normal for his age. The doctor wants to see him again in March to recheck his eyes--but, for now, his eyes look great! In fact, she commented on how well he is tracking. As usual, Noah tolerated all of today's procedures very well--we are so grateful for his easygoing personality.

Today also marks Noah's 5-month birthday. We are thrilled with all he has achieved so far!

Another Good Week

2009-11-22T14:44:00.000-05:00

Noah had another great week of therapy. Thankfully, his right (affected) arm and hand still look wonderful. In fact, there are many days when he seems to reach and grab better with his right hand than with his left. Only time will tell if his right arm/hand will keep up with the developmental progress of his left. For now, it seems like Noah has a good chance of having decent function of his right hand--something that, a few months ago, I did not think was going to be possible.

The skills that Noah has attained in his right arm/hand can definitely be attributed to all of the great physical and occupational therapy he has received since birth--and the fact that I never let him use his "good" left arm/hand. My hope is that by forcing him to use his right arm/hand he will "rewire" the area of the brain that was damaged by the stroke.

Next week, we are heading to Boston Children's Hospital to have Noah's eyes examined by an Ophthalmologist. Although I do not think there is a problem with his vision, I have noticed a very slight asymmetry with his eyes. The asymmetry only occurs occasionally and may be developmentally appropriate for his age. Given his history, however, the doctors at Boston Children's want to see him sooner rather than later. In case there is a problem, it will be easier to correct if caught early. It seems there is always something to worry about! Hopefully we will know more after our appointment in a few days.

Thank you all for continuing to check Noah's blog--We are lucky to have such great support!

48-Hour EEG

2009-11-13T14:59:00.000-05:00

Thankfully, Noah's EEG was totally normal--meaning, there was no sign of seizures or any irregular brain activity during the 48-hour test. Although it was horrible to have him attached to wires for the past 48-hours, it was all worth it to confirm that his nighttime twitching is benign. One less thing for me to worry about!

Thanks to everyone for all of your thoughts and prayers--It is comforting to know we have so many people supporting Noah and our family.

More Milestones

2009-11-08T20:15:00.000-05:00

Noah continued to make great physical progress this week. Along with bringing toys to his mouth with both hands, he is also rolling! The picture below is of Noah holding one of his toys with his right (affected) hand. It is truly amazing to watch him reach these developmental milestones on time.

On a less-positive note, Noah will have a 48-hour ambulatory EEG this week to rule out possible seizure activity at night. Unfortunately, he has been twitching while he is asleep (both during nap time and at night). Thankfully, our neurologist believes that it is a benign condition unrelated to the stroke--apparently many babies and kids twitch in their sleep. To be sure, Noah will have an EEG later this week. To be doubly sure, we are taking Noah to Boston Children's Hospital Epilepsy Division next month. Of course, I will update the blog with his EEG results at the end of the week.

In the meantime, we are enjoying Noah and all of the great developmental milestones he has achieved so far. I hope our news continues to be positive!

Happy Halloween

2009-10-31T17:41:00.000-04:00

Noah celebrated his first Halloween today with his big sister and a house full of fun, energetic kids---a great Halloween party, even on such a dreary New England day.

Last week marked Noah's four-month birthday. I can't believe it has only been four months. In many ways, it seems like we have been dealing with his stroke for a lifetime. We are tremendously lucky that Noah is doing so well right now. We appreciate each good day that we have with him and we are thankful that his first Halloween was another good day.

Happy Halloween!

Celebrate!

2009-10-17T20:45:00.008-04:00

For the first time since he was 48 hours old, Noah is Phenobarbital-free! As promised, we had an ice cream celebration today for both kids. Of course, since Noah is still too young, Hannah was the only one who could actually eat the ice cream-but Noah seemed to enjoy watching his big sister make a mess!

We are thrilled to have made it to this day. Not having to administer Noah's medication is a huge burden lifted from our daily routine. We are so happy and proud of all of the great progress he has made--And we are equally proud of our daughter who, with all of the turmoil of the past four months, has been the second victim of Noah's stroke diagnosis. Today, they both deserve to celebrate!

3 Days and Counting...

2009-10-14T11:54:00.011-04:00

Yesterday, Noah and I (Eliza) went to the thrombosis clinic for a follow-up. The good news is that it is unlikely either of us will need to be followed by the hematologists there. One less doctor for us--which is great. The hematologists seem to believe that Noah's stroke was a one-time event from a clot that likely formed while I was pregnant--probably due to my Factor V clotting disorder. Kevin still needs to be tested for genetic clotting disorders but if he is negative, Noah will not have to undergo any further blood tests. We will be happy when we can put the genetic/hematological portion of this event behind us and focus all of our attention on Noah's recovery.

Also, only three more days until Noah is Phenobarbital free....We plan to take both kids out on Saturday for ice cream to celebrate!

I want to thank all of you who continue to follow this blog. We are amazed at how many people check-in on Noah's progress (from all around the world!). It has been a great way to keep family and friends updated--but it has been especially nice to know that other families with babies/kids who have suffered strokes have found Noah's blog. No baby deserves to start life in such a horrible manner--but it is nice to know that we are not alone and there are other families out there who have experienced the same heartache and challenges. If any of you would like to contact me personally with questions or comments, you are welcome to email me directly at: egmaltby@hotmail.com.

Continued Phenobarbital Reduction, New OT Student and Swimming Therapy

2009-10-03T22:17:00.011-04:00

Beginning tonight, we further reduced Noah's Phenobarbital dose--he received just one quarter of his pill. As long as Noah continues to be seizure-free, in two weeks he will be completely off of his medication. I do not think there are words to describe how happy we will be if he does not need daily medication. We can only hope that Noah's seizures do not return in the next couple of weeks (or ever, for that matter!).

Noah continues to look great. His therapists believe that if there was going to be something significantly wrong with his right leg, they would have seen the signs by now. Of course, we are thrilled to hear that his leg will likely be unaffected by the stroke. His right arm also continues to look great--but it is still too soon to know how the stroke will affect his right hand. He is able to grab and bat at toys, but we will not know for many more months about the development of fine motors skills in his right hand and fingers.

Additionally, we have added a new member to Noah's therapy 'team'. Starting next week, an Occupational Therapy student will begin an internship with us. Not only will she be around to help with all of Noah's therapy, but her presence will allow me (Eliza) to spend some well-needed quality time with Hannah during the day. In return, she will receive credit toward her degree in Occupational Therapy/Rehabilitation and Disability Studies. We are excited to have her join us.

Noah also started swimming therapy this week. He really enjoyed being in the pool and we think it is going to be another good way to encourage the continued use of his right side.

Thanks again to all of you who continue to check-in on Noah's progress. We know there are many of you out there keeping Noah in your thoughts and prayers. It means so much to us to know that he has the love and support of so many people.

Three Months

2009-09-27T12:43:00.000-04:00

We have made it through the first week of weaning Noah off of his anti-seizure medication! Noah will continue to get half of his Phenobarbital pill for one more week, and then he will get a quarter of the pill for the following two weeks. After that, if he continues to be seizure-free, he will no longer need any medication. Although our neurologist said Phenobarbital should not interfere with his personality, we have definitely seen a change in Noah since we lowered his dosage. He now seems more alert later into the night and he is definitely not sleeping as soundly. Although we are not sleeping as much as before, this is a welcome change. We are happy to finally be experiencing Noah's personality without the haze of a narcotic.

Noah had his three-month check-up with his pediatrician last Friday. He is continuing to grow rapidly--he is already over 14 pounds! He still looks great and the movement and strength of his right arm and leg are still comparable to the left side. We are confident that everyday his brain is creating new pathways around the damaged area. Noah's stroke would have been catastrophic to an adult, but the infant brain has the capacity to heal with much more ease--it is truly remarkable to watch his progress.

Phenobarbital Reduction and ABC News Article

2009-09-20T18:36:00.000-04:00

Last night, we began to wean Noah off of his anti-seizure medication. Per our neurologist's instructions, we reduced his Phenobarbital pill by half. We are so excited about the prospect of Noah not needing daily medication--but we are now very nervous that the medication reduction may cause his seizures to begin again. We are trying to remain cautiously optimistic during this weaning period.

At the end of last week, the ABC News website posted a good article regarding infant and pediatric strokes. As you will read in the article, many babies who have suffered strokes go undiagnosed for months and sometimes years, preventing them from receiving early therapy. Unfortunately, most nurses and doctors still do not look for and/or fail to recognize the signs of infant stroke. We are confident that if Noah had not had seizures he would not have been diagnosed for many, many more months and we would have missed this critical time for rehabilitation. Please click here for the ABC News article.

Thank you all again for keeping Noah in your thoughts--especially during this critical time of trying to wean him off of his medication. The attached picture is of Noah using his right arm to bat at a toy--Hopefully he will continue to use his right arm and hand as well as he can right now.

Behavioral Health Specialist and Speech Therapy

2009-09-14T12:48:00.004-04:00

At the end of last week, we took Noah for a consultation with a pediatric behavioral health specialist. This doctor will be a bridge between our Early Intervention team and his medical doctors. She evaluated Noah's motor skills and eye-tracking abilities. Once again, Noah tested above his age. His evaluation revealed he has hit all of the milestones for a baby of about 4-months old. We are pleased to have this new doctor on Noah's "team" and, along with his Early Intervention therapists and other doctors, she will help to detect and address any behavioral issues that may develop.

Noah's speech therapy also officially started at the end of last week. Thankfully, the speech therapist thinks he is sufficiently cooing and making appropriate sounds for his age. Since he is only 2.5 months old, for now, his speech therapy will consist of exercises to develop the muscles around the mouth (although his oral muscular development is not a concern--it is just a proactive step at this point). We will also begin to introduce sign language to Noah. In case his language is delayed, signing will be another way he can begin to communicate with us.

Noah also enjoyed his big sister's 2nd birthday party this weekend. Hannah's birthday is just another reminder of how quickly time passes and to try to appreciate each day. We can only wish that on his 2nd birthday, Noah will be running around our yard, climbing the swing set and throwing balls to other kids--seemingly basic two-year old abilities that are still uncertain for Noah and we no longer take for granted.

Emergency EEG

2009-09-09T09:00:00.000-04:00

Noah had an emergency EEG yesterday afternoon to rule out infantile spasms (a rare form of infant epilepsy). Lately, when he gets tired or hungry, his movements seem very "jerky" and our neurologist agreed we should have him checked out. Thankfully, Noah's EEG was totally normal and there is no sign of seizure activity.

On another positive note, here is a picture of Noah beginning to sit-up unassisted. He is applying weight to both arms equally--which is a great sign. We can only hope that he will continue to do well and the worrisome days like yesterday will become more infrequent.

Thanks again for keeping Noah in your thoughts and prayers-

Hannah's Tests

2009-09-03T19:44:00.000-04:00

We are so happy to report that Hannah's blood work came back today and she is not at an increased risk for a stroke or clot. Thankfully, all of the blood-clotting tests except one came back negative. Like me (Eliza), she is a carrier of MTHFR but only one copy (meaning Kevin is not a carrier). MTHFR is only dangerous if the carrier also has high homocysteine levels. Thankfully, Hannah's homocysteine levels are low. These test results provide us with tremendous relief, since we no longer have to worry about Hannah's risk of stroke.

We now think that these clotting disorders may have played a role in Noah's stroke, although we will never know for sure. All we can do now is move forward with the genetic information we now possess. What matters now is giving Noah the best treatment possible in order to maximize his recovery.

Two Months

2009-08-27T21:40:00.000-04:00

Noah continues to do well this week. He had his two-month appointment with his pediatrician and, aside from his stroke, is a healthy, growing baby.

This week, Noah's therapists have introduced more exercises to help stimulate his right arm and leg. As you can see from the picture, he already has great head control and has really started enjoying "tummy-time". Our doctors have assured us that, even if he begins to show some physical deficiencies in the next several months, he will not lose any motor skill that he has acquired (i.e., holding-up his head). Rather, the development of the right arm and leg will slow down and a preference for the left arm and leg may emerge.

All we can do now is continue to push Noah everyday. What we ask of him is more than any baby should have to endure--but we do so with the hope that his amazing efforts will help him in the future.

Follow-up with Local Neurologist

2009-08-20T22:24:00.001-04:00

We had our follow-up appointment with Noah's local neurologist today. The last time he saw Noah was in the NICU, so we were excited for him to examine Noah and see his progress.

Like his evaluation in Boston, Noah had another great neurological examination. Our local neurologist thinks Noah is alert and tracking well. He also indicated that, as long as Noah continues to be seizure-free, we can begin to wean him off of the Phenobarbital next month. Needless to say, we are THRILLED about the prospect of discontinuing his anti-seizure medication. Not only is it hard for us to administer, but it is also a harsh reminder each night of the realities that we may face down the road. To eliminate his daily medication would be a wonderful step forward for all of us.

On a related side note, Hannah was seen by her hematologist yesterday. Since Eliza is positive for 2 genetic blood clotting disorders, both Hannah and Noah need additional blood work. Noah's testing will not be done until January (testing infants so young does not yield accurate results, so we have to wait), but we should know the results of Hannah's tests in a few weeks. In the meantime, Noah and Eliza will be followed to make sure we all remain healthy.

Thank you all again-

Massachusetts General Hospital

2009-08-18T21:01:00.000-04:00

Today, Noah was evaluated at Massachusetts General Hospital in Boston. Although we are confident that he has received great treatment thus far, we wanted to confirm that there is no additional treatment or therapy available for him.

Noah's physical examination today was excellent. The pediatric neurologist confirmed that there are currently no physical residual effects of the stroke (there is no asymmetry between the movements on his left and right sides). The doctor also felt Noah was very alert and tracking very well with his eyes. He also confirmed that his seemingly laid back nature is his personality and not a residual effect of the stroke (something we were shocked to hear, after having Hannah who screamed for the first 8 months of her life!).

Based on Noah's physical examination and the review of his two MRIs, the doctor also indicated that he is presently on-track to have no “major” stroke-related problems. What that means is that he will likely have use of his right arm, but he ultimately may have problems with dexterity in his right hand/fingers. Also, Noah will likely have use of his right leg, but may walk with a slight limp. In terms of his cognitive development, he may present with some developmental/learning delays--But nothing severe. Of course, no doctor will be able to tell us exactly what will happen with Noah in the future. Like we have said before, only time will tell.

This week, in addition to his occupational therapy (which he started a couple of weeks ago), he will begin a weekly physical therapy session. He has also had a few massage therapy sessions and he will begin a swimming therapy program next month. We are also hoping to introduce music therapy--especially now that we know he is likely to have trouble with his right hand/fingers. As always, if anyone has any information or suggestions about different therapies, please email us.

Thank you all again for caring about Noah and following his progress.

Early Intervention Begins

2009-08-06T20:36:00.000-04:00

Noah's early intervention started today--We are really excited that he will be receiving therapy this early (...as excited as we can be about our newborn baby needing early intervention). Due to his stroke diagnosis, Noah automatically qualifies for three years of early intervention services (the maximum in Massachusetts). If he still needs services after three years, our school system will take over.

As I mentioned in my last blog, Noah will be treated in-home by an occupational therapist, physical therapist, massage therapist and speech therapist. So far, we really like his therapy team. Thankfully, the same therapists will be treating Noah for the next three years.

We are also going to have Noah followed by a pediatric behavioral health specialist. Her role will be to monitor his therapies and to test more specifically for the behavioral issues he may face as he grows. Unfortunately, babies who survive strokes are sometimes more susceptible to significant brain development disorders. So, in addition to monitoring him for physical weakness and language delays, we will also have to watch for early signs of autism, behavioral problems, sensory issues, etc. For us as parents, these issues are our biggest fears. We can only hope that his brain will continue to recover from the trauma, so we can avoid some of these major developmental problems.

Thank you all again for keeping us in your thoughts. It is comforting to know that there are so many people praying and thinking about Noah often. All of that great energy is reaching us and helping to get us through the difficult days.

A Good Day

2009-07-31T22:06:00.000-04:00

Our Early Intervention team came today to evaluate Noah and determine what services he should receive. The evaluation included an assessment of his physical, cognitive and language abilities. We are happy to post that Noah's evaluation was excellent. His abilities match those of a two-month old. Considering he is only 5 weeks old, we are thrilled that he is already ahead. In addition to the great evaluation, we are also pleased to report that he is officially socially smiling--which is another milestone he has hit on time. We are elated that he is now smiling back at us--it is something that, 4 weeks ago when he was in the NICU, we were afraid we would never see.

Beginning next week, therapists will be here a few times a week to help improve and/or maintain his physical, language and cognitive abilities. We will also be working with a massage therapist to encourage stimulation in Noah's right arm and leg.

Although he is doing great today, we still will not know for a few more months about whether he will have weakness on the right side...and it will be a years before we know how the stroke has impacted his cognitive and language skills. However, he looks great today and for that we are thankful.

Unexpected Test Results

2009-07-30T21:46:00.000-04:00

Noah had a follow-up with his pediatric hematologist today. The good news is that every genetic clotting disorder that he was tested for in the NICU came back normal. The unexpected news was to learn that I (Eliza) tested positive for two genetic clotting disorders (Factor V and Methylenetetrahydrofolate Reductase "MTHFR"). This came as a total shock, since these genetic clotting disorders are rare.

Of course, after receiving this news, our primary concern is that both Noah and Hannah are not at risk for any further stroke-related events. Thankfully, the hematologist made it clear that it is unlikely my blood disorders had anything to do with Noah's stroke. In fact, the vast majority of infants who have strokes have mothers who do not have these blood mutations. The fact that I tested positive just makes this whole situation even more rare. However, as a precaution, both Noah and Hannah will need further testing, which will happen soon.

While we had hoped that our follow-up with the hematologist would eliminate some of our concerns (and answer some of our questions), it has now generated more questions and created the need for further testing for all of us (including possibly Kevin). These additional concerns just add to the stress and shock of the past five weeks.

Pediatrician

2009-07-24T20:33:00.000-04:00

Today Noah had his 4-week appointment with his pediatrician. He is growing nicely (already 9.12 pounds) and seems to be doing well. His body is moving symmetrically and he is tracking well with his eyes, which means that he is not presenting with any stroke-related physical problems right now. Although he looks great now, it is likely that we will begin to notice some physical weakness on the right side when he is about 6 months old. We hope to encourage the use of his right side by continued stimulation and exercise. We have found a great program for treating infants with brain damage at the Institutes for the Achievement of Human Potential (in PA). When Noah is a bit older, we will likely take him there for a full evaluation. In the meantime, we are following their program specifically created for infants with brain trauma. The picture to the right shows big sister Hannah helping Noah on his "Infant Crawling Track" which is designed to promote movement and crawling, even for infants as young as Noah. It is amazing to witness just how much week-old infants can move & "crawl", if given the opportunity.
It is strange to think that Noah was born just a month ago--and at this exact time 4 weeks ago, we were enjoying our first night with our seemingly healthy baby boy (he didn't start having seizures until he was about 24 hours old). It is crazy how life can change in an instant.
Thanks to everyone who has put us in touch with other families that have experienced infant stroke. The more we talk about it, the more families we have found who have gone through this type of trauma. It is nice to know we are not alone.

Phenobarbital Level

2009-07-22T19:03:00.000-04:00

Noah's Phenobarbital level was checked again today (they take the blood from his arm--a very minor procedure, given all he has been through, but still tough for us to witness). Thankfully, the increased dosage has kept his levels within the range needed to keep his seizures at bay. Unfortunately, as he grows, he may outgrow this dosage and he will begin to have seizures again (like what happened last week). The hope is that once the scar tissue surrounding the damaged portion of his brain heals, the seizures will stop on their own and he can be weaned off of the medication. Phenobarbital is a pretty serious drug--a narcotic--so, although he needs the medication to stop the seizures, it causes extreme drowsiness. Consequently, we are always wondering if his mellow personality is a result of the stroke and/or the side effect of the Phenobarbital--just another question that we will not know the answer to for a long time.
Anyway, thanks again for everyone's continued thoughts and prayers for our family. We really appreciate all of the support we have received.

Wednesday, July 15, 2009

2009-07-15T21:18:00.000-04:00

Thank you all for your thoughts and prayers for Noah. Unfortunately, he suffered a few more seizures last night. After some blood work this morning, our neurologist discovered that he has outgrown the dosage of his anti-seizure medication. While it is great that he is growing, the need to increase the level of his medication is a set-back. We were hoping to be able to wean him from the medication in about a month--Now that seems less likely.
He continues to look and act like a "normal" infant for his age. We have started him on a series of activities & exercises each day to stimulate his brain and remind him that he has a right arm and leg (the side that will be impacted by the stroke). An early intervention team will be conducting a full evaluation of him at the end of the month. We hope that some of this early stimulation will help to improve his cognitive and motor skills development. Only time will tell.