Amazing Finn

It is amazing it is already 2009! Seems like the tail end of last year flew by! We had a great holiday season; hope you and your loved ones did as well. Below are some highlights of our last couple of months and updates on Finn.

In December, Finn discovered chocolate. Both he and his sister had their own advent calendars. Each day they would open a little door and find a piece of chocolate. It didn’t take long before Finn started asking for his first thing every morning! I thought the poor little boy would go through withdrawal when it was all over, but he has done fine. While we are not a big fan of candy and sweets around here, we loved that he had an interest in this; it all seemed very “normal.”

As for Santa, Finn was not a big fan. The first time we tried to get him to sit on Santa’s lap at the mall was a disaster! We even have the tragic photos to prove it. His daddy is now referring to it as “Santa Trauma.” We did later ride the Santa Train (a 30 minute ride on a real train to visit Santa at a train depot) and he did a bit better. We had told him that after seeing Santa we would have cookies, and he seemed to think that was a good idea, since he is all about “cook, cook, cook” (his way of saying cookie). He also ate way too many gingerbread cookies this year, which made for real fun diaper changes. Not!!! No more gingerbread for Finn for a LONG time.

Enough about food . . . Finn had a blast on Christmas morning with family around and lots of wonderful toys. He got a train set, a play kitchen, a toy car garage, and a Diego talking phone, among many other wonderful things. He really liked the large stuffed turtle that his Farmor gave him too and he had us all in stitches when he tried to “ride” it. It was one of the moments you’ll always remember. It was hard to say goodbye to family and he still looks around for “Tutu” and “Pa” when we mention their names. It is hard to comprehend how far away they live. Finn also thoroughly enjoyed the snow, which we got our fair share of around here. While I don’t think he’ll ever be the daredevil his sister is—she could not get enough of the sled and was continually trying to figure out how to make it go faster—he certainly enjoyed himself. He liked crawling around in it, and grabbing it between his mittens and tossing it in the air. He was also a fond admirer of the snowman we built in the backyard, and regularly pointed it out to us or waved “hi” to it. I think he was the saddest of all when it melted.

Finn had three big appointments at Children’s Hospital at the end of the month of December. The ophthalmologist (eye doctor) said that while the intermittent strabismus (eye crossing) and occasional nystagmus (eye darting) were still present, that overall Finn’s eyes looked great! And he felt that his acuity was good, and normal. Of course we were very happy to hear that. I so much want Finn to be able to read. (Thanks again, Mom, for coming with me to the appointment. I guess that no matter what age you are, it is always good to have your mom with you for important doctor’s appointments). The following day we meet with an Occupational Therapist (kind of like a physical therapist) at Children’s again to have Finn go through the Bayley Developmental Evaluation Test, again. (Ah, what a way to spend New Year’s Eve with my husband! So romantic!). Anyway, Finn did GREAT on the test. No, not only great—he ROCKED! I was so proud of him I thought my heart would float out of my chest! (Boy, the day he first walks, I think my heart will ascend to another solar system). In terms of his cognitive, fine motor, and receptive language, he was totally average. Gotta love being average! His expressive communication was at the low end of average, but still we were happy with that. His gross motor score was equivalent to that of an 11 month old, but we knew that going in that it would be very low. Importantly, I asked the OT if she thought he would walk and she said she thought he would. That was music to my ears of course. Anyway, later we met with our Developmental Pediatrician there, and he also had a lot of good, encouraging things to say. No one knows when Finn will walk, and it may still be a while, but we continue to expect that it will happen. His big challenge is to develop more “truck” strength (basically his torso). The plan is to continue to meet with therapists here in our home and we are constantly brainstorming ways to challenge him and help him learn the skills he needs.

Much love and blessings to all of you! May 2009 be a year of wonder, awareness, and happiness for all! Oh, and new pictures are in the Gallery > Winter 2008/2009. ENJOY!

As I write this today, one of my dearest friends is in labor with her first child. I am thinking about one of my favorite quotes: Birth is just the first of countless times we will confront the fear of the unknown for the love of the child (Peggy O’Mara). Over the past year, I have realized how many times I have had to confront the fear of the unknown. Sometimes daily, it seems. This is what being a mother means to me – my ability to keep mothering Finn in spite of the fears, in spite of the uncertainties, in spite of the hardships.

It was a year ago this month he had his surgery. I had hoped and prayed at this time last year that by now he would be walking and talking, that he would be close to catching up with his peers. Sadly, that is not the case. He is still very much behind, especially in terms of his physical abilities. He is still unable to stand independently for more than several seconds. Often is it hard to see how he will ever walk when this is still so difficult for him. It is not for lack of trying! He frequently attempts to stand, but it is hard for him to find his sense of balance. The low muscle tone and ataxia persist.

Nevertheless, he has made some progress in the last few months as well. Despite his challenges with standing, he loves to climb! In fact, he tries to climb on just about anything – the couch, stools, his toys, boxes, etc. and even our cooler. He also likes to try to kick balls. Yes, this is true. He can’t stand but he wants to kick. He’ll even try to kick a ball while crawling around the floor. This is not an easy task! He has to be strapped in to shopping carts each and every time now – otherwise he tries to stand up in them.

In the last two weeks Finn got orthotics (AFOs) for his feet. These are plastic, contoured things that have Velcro across the top. They fit around Finn’s feet and ankles, and then his shoes go on over them. His therapists were optimistic that they would help him stand better, but unfortunately we haven’t really seen these improvements. Next week he is going to get fitted again and possibly get a pair that are a bit taller, offering him more support. It has been difficult for us, as we were hoping he wouldn’t ever need these. Now, it has been even more discouraging since they haven’t worked quite as well as we all hoped.

On a more positive note, over the past month one of Finn’s huge accomplishments has been his new found ability to drink from a straw. We had been working on this for many, many months so we are so happy for him. We have a bunch of hard plastic cups with lids and straws that both him and his older sister are very much enjoying using. He still bites down on the straw after a while, but at least now he can does now how to suck when he wants to. I think he is quite proud of himself and so are we.

In terms of language, Finn has added some approximations of animal sounds to his repertoire. He makes an excellent “caw caw” for crows and he says a high-pitched “mao” for cats. He also attempts to say “neigh” and “moo.” And his dinosaur roar is fabulous. We spend a lot of time talking about animals, and all kinds of vehicles of course. When we are out and about he is always on the lookout for buses, big trucks, and fire engines. He is certainly a typical boy in that regard!

Lastly, we have been enjoying lots of fun summer activities. We had a wonderful camping trip in June. Finn loved playing at the campsite and he did pretty well sleeping in the tent, even though it took him a while to fall asleep since he was so excited. We have also been picking lots of summer berries. Just like his sister, Finn LOVES berries. He has even gotten the hang of eating some and then putting others in the basket for later. Very cute!

Finn and I will be starting a cooperative preschool next month. It will just be one day a week for two hours. I am hoping he will enjoy the socialization and that it will work out for us. Thank you all for your continued prayers and support. We often feel very alone in this journey; we appreciate the love we receive from others.

There are new pictures up in the gallery as well. And we are attempting to update the entire site. So look for some changes!

It was one year ago today that we learned that our sweet, beautiful, adorable, almost-five-and-a-half-month-old baby boy had something wrong with part of his brain. I had never heard of ‘ataxia’ and I don’t think I even knew that there was a part of the brain called the ‘cerebellum.’ A year ago today my world was turned up side down like nothing I could have ever imagined. It was just Finn and I, and our pediatrician, alone in the exam room on a cold and cloudy March morning. When I heard the words that there was something wrong with Finn’s brain, it was as though the floor under me gave way and the walls around me had crumbled. I immediately felt my stomach twist and turn and my heart thrummed louder and louder until it was almost deafening in my head. Something was wrong with Finn’s brain – my worst fear had just been realized. I thought I would throw up or faint or explode or just disintegrate. Nothing would ever be the same again. I had to call my husband at work and tell him the news. I had to call and tell my mother, who lived thousands of miles away, but I knew she would be here the next day (which she was). I had to call and schedule an MRI at Children’s and deal with saying the words to someone else, to a stranger on the phone. This was really happening . . . I had to think and communicate without sobbing (and without exploding or disintegrating). I had to stay strong and focused, like never before. But as soon as the doctor said those words and as soon as we got the news the following day that Finn had a vascular anomaly in his brain, I could never hold or look at or think of Finn the same way. After that moment, I loved him more, and I loved him less. I loved him with the ferocity of birth and death and life itself, but part of him was broken and part of me was broken too. Neither of us would ever be the same again. Our journey, as two souls intricately locked together, had truly begun.

For the next 24 hours I was unable to eat or sleep for that matter. With some help from our pediatrician and several impassioned calls on my part, we were able to schedule an MRI for 7:30 AM the next morning. In the dark morning hours of that sleepless night, I threw up stomach bile until my throat was raw (and it was actually painful to eat for about a week after). My hands were shaky and I could barely stand I was so dizzy. My friend, who was coming over to watch Finn’s older sister, was late that morning so my husband had to stay at home and wait for her while I drove Finn in by myself. I was alone with Finn when he went under for the first time for the MRI. He struggled against the mask they put on his face and kind of choked and twitched as he was sedated. When they wheeled Finn away to the other room, I sobbed against the chest of the nurse that had put her arms around me. Where was my husband?! Minutes later he arrived. We waited 50 torturous, endless minutes to learn if Finn was going to be okay (there are always risks with anesthesia, especially in a baby) and to learn what has happening with his brain. It was only supposed to take 20 minutes. I prayed like I had never prayed before. I made pleas and deals. I begged and visualized and tried to summon every fiber of my being into manifesting a positive outcome. And somehow I continued to breathe and stand and sit and talk. But that was it. I couldn’t manage anything else. When we learned soon after they brought Finn back to us that he had a vascular lesion in his brain that was most likely causing his difficulty with vision, balance, and coordination, we were optimistic. The neurosurgeon we saw later told us it was a cavernous malformation and that hopefully it would not cause on-going or long term problems for Finn. We didn’t know at that point – of course we didn’t know, and I don’t think I would have been able to handle knowing – that at the end of the summer Finn would have surgery in a state miles away to remove what we later learned was actually and AVM, a vascular anomaly that often presents with a fatal hemorrhage. We were so unlucky, and so very lucky all at the same time.

For now, today, I am grieving and I am celebrating. I am reliving the intense sorrow and fear I felt last year on this day and the intense emotions that have been part of my daily existence over the last 365 days. The emotions that have shaped and carved me into the person I am today – someone so very different from a year ago – have undoubtedly been some of the most powerful of the human experience. The valleys have been dark beyond imagine, but the peaks have shown me joy I didn’t know was possible. So, on this day, I am giving thanks for Finn. For the simple, yet beautiful, fact that he is here with us. But beyond that I am also celebrating his incredible accomplishments and how far he has come. His perseverance and spirit are absolutely amazing! And in the peace and quiet of this moment on this day 365 days after the worst day of my life, I am also giving thanks for and celebrating how far I have come as a person. He is the greatest gift I could have ever received, and I am humbled and awed that I have been chosen to be his mother.

I can’t believe it is already February! I meant to post at the end of last month but somehow time just slipped away. Overall, Finn has had a great month. He continues to slowly progress. His commando crawling is quite refined now and he is constantly trying to pull himself up on everything. One of his favorite games – when a bathroom door is open – is to quickly commando crawl into the bathroom and pull himself up on the bath tub. All the while he says “ba ba ba” (which we think is his attempt at saying “bath”). It is a little nerve-wracking for us, especially since he is a bit unsteady and the one bathroom has a tile floor and tub. But we certainly admire his drive and abilities!

At the end of last month, Finn was evaluated again at Children’s Hospital according to the Bayley Developmental Assessment test. Unfortunately, he still scored extremely low in terms of his gross motor skills. In other areas of development he was only slightly behind and within the “normal” range. That was encouraging news to us! His developmental pediatrician was also very optimistic in terms of Finn’s future ambulatory skills. He told us that he believes that Finn will walk someday, and he even went so far as to suggest he thought he would walk by the time he turns two! We were very happy to hear that optimism and positive outlook.

Below is a list that I shared with both his developmental pediatrician at Children’s and our family pediatrician. It is a good summary of Finn’s current skills and abilities.

Finn’s Fantastic Accomplishments:

Gross Motor

• transitions from prone or supine on the floor into sitting position and back down
• reaches, pivots, and leans in sitting position
• prevents self from falling over by extending arms
• rocks on hands and knees, and extends one arm to reach an object
• commando crawls
• crawls in creeper or quadruped position when pushing a book on the floor
• crawls up and over cushions and pillows on hands and knees
• stands/plays at the couch or other low table for extended periods of time
• lifts one foot at a time and shifts weight between feet when standing at couch
• does “downward dog”
• pulls himself up to the couch, bathtub, beds, activity tables, coffee table, and even the sliding glass door!
• attempts to climb up onto couch and other low furniture
• attempts to walk forward when prompted and hands are held

Fine Motor

• eats many different kinds of foods and even feeds himself
• uses pincer grasp and can chew and swallow nickel-sized pieces of food
• can pick up objects as small as peas and teething tablets
• attempts to use a spoon to feed himself
• throws a ball repeatedly
• presses buttons on toys and turns light switches on and off
• attempts to stack blocks and other toys
• attempts to put shapes in a shape sorter
• attempts to turn pages in book

Social/Cognitive/Language

• claps, waves bye, plays peek-a-boo, gives kisses, and attempts to play pat-a-cake
• points at everything!
• occasionally uses some signs: more, outside, milk, all done
• occasionally says: mama, dada, la (light), buh (book), and ba (ball)
• will point out different objects in books
• plays with many different toys and objects – including rolling wheeled vehicles
• makes special “cute” noises when playing with stuffed animals (especially bears) and dolls
• clearly demonstrates pleasure and displeasure
• sleeps in own bed through the night (most of the time)
• continues to be very social, loving, and motivated!

I’ll try to get some new pictures up at the end of this month. Thank you all so very much as always for your on-going prayers and support. We still need them!

Finn has made it to his 13th month of life and so far it is proving to be a lucky one! In the last couple of weeks he has made some very nice progress. Although Finn is still struggling with low muscle tone and difficulty balancing, his ability to transition to and from different large motor positions is improving. For example, he can now not only go from sitting into a lying down position, but he can also get himself into a sitting position from lying down. For months we had been helping him do this and now he can do it on his own. But, by far his biggest accomplishment as of late is his new found ability to “inch-worm crawl!” He basically pulls himself across the floor with his front arms and even gets up on his knees every once and a while too. This is awesome in our book! We are working on helping him do this with a coordinated right-side/left-side movement of his arms and legs as well, and we are also continuing to try to help him get into a quadruped (or hands and knees) position. We are also trying to help him learn to pull up and stand and play at the couch or an “activity table.” He is able to bear weight on his legs, but has trouble balancing in that upright position. The good news is that he wants to do these things and seems determined. Hopefully, very soon his body will catch up with his mind’s desire. Motivation is a huge part of success!

As for other areas of development, his fine motor skills do seem to be improving a little as well. He is still working on perfecting his pincher grasp, but part of the time he does seem to have it down and can actually grab small items between his index finger and thumb. Finn still isn’t “speaking” or communicating with signs, but he continues to babble. “Da” is still his favorite sound to make. We are hoping that soon he will identify it with “daddy.” We consulted with a speech therapist and she gave us some exercises to do with him to encourage language development. We’ll go back again in 3 months to meet with her again. We have increased the amount of physical therapy he does now to once a week. Hopefully, as he gains increased muscle tone and physical ability, his speech will also develop.

Two of the highlights of the past month have been that Finn can eat very small pieces of bread and cheese! We are so happy that he will know the pleasure of eating such yummy things. Also, the other day at a store he rode around the “plastic car” part of a shopping cart. He held on to the steering wheel and even honked the little toy horn. He thought he was so cool! It was great!

Please continue to keep Finn in your thoughts and prayers. He still has a long way to go and it is often painful to see how far behind he is as compared to other kids his age, but we hold on to hope and the belief that he can overcome his challenges. We try to focus on the accomplishments he has made and remind ourselves that he is on his own timeline and journey. He remains a beautiful, inquisitive, and happy little being.