Tag Archives: Cerebral Palsy

Change for Mattie

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Somehow, someway an entire middle school was able to raise $1,306.83 for Mattie. The amount is amazing. The day my mom told me the total, I was in shock. So many amazing people came together to make this happen. A special needs class civic project taught me more about giving then I have ever known. The thought of other special needs kids helping out Mattie is just amazing. What a beautiful lesson to be taught 😉

Jim recounts our experience:

Ms. Emison, a special needs teacher who teaches at WeightmanMiddle School, (the same school as Jessica’s mom – who is also a special needs teacher) started a civics project called “Change for Mattie”. The basic idea of the project was for the students to learn how they can and should always give back to their communities in some way, shape or form –  life lessons in community service! The students began by using the brainstorming process to learn how each student’s idea should go on the board without rejecting anyone’s idea.  Then they discussed the different ideas on the board to determine what would be the best idea for their civic project. Many of the students had seen pictures of Mattie after she was first born and knew about all of Mattie’s doctor appointments and therapies. So when Mattie’s name came up, the class had made up their minds to ask the rest of TEWMS to help them raise money for Mattie!

The entire student body was told that the class which raised the most money would be treated to an ice cream party where they would have the opportunity to meet Mattie. Each morning a video would play of Mattie. This video showed how hard Mattie worked to try and do what most children take for granted.  The students and staff pulled through from their hearts and piggy banks to donate, showing tremendous support for her and the classroom’s project. The talk on the campus was how much they wanted to meet Mattie, they weren’t interested in the ice cream!

One sixth grade girl especially took the challenge to heart. She went home and told her mom that she was going to help raise money for her new friend Mattie who couldn’t walk. The girl had her mom bring her to a local bakery and bought cookies. She then set up a stand in front of the cafeteria before school every day and sold the cookies at a profit. The little girl raised $78.00 for Mattie all be herself!

This past Friday Jess, Mattie and I headed to the school to accept the money the students, teachers, and administrators had raised and to participate in the ice cream party. When we arrived, Jess’ mom met us at the front desk and we proceeded to sign in. We had about 20 minutes before the ice cream party started, so we went to her classroom and had the opportunity to meet the children in her class. It’s really easy to get caught up in the everyday efforts it takes to raise Mattie. Meeting these kids with other difficulties really put things in perspective and reminded me to be thankful for the capabilities Mattie does have. My heart breaks for the parents of other kids with special needs and it is important to realize that while Mattie has her own difficulties, she also has a lot of things going for her and that not all kids are as well off as she is. This thought also extends to Joba and how lucky and blessed we are that he is healthy and fully capable of doing anything he decides to do in this world. I wish everyone could have an opportunity like this and to truly gain this perspective (the world would be a better place!)

We also had the chance to go to Ms. Emison’s classroom and meet her students. All of them immediately recognized Mattie from the posters that had been hanging around the school and the kids were all very excited to meet her. It was immediately clear that these kids had personally invested in the project; you could see it on their faces as soon as they caught a glimpse of Mattie. It was also very touching knowing that these kids were all dealing with many of the same issues that Mattie has or will be dealing with.

On the way to the cafeteria we had to walk across the school courtyard where hundreds of middle school aged kids had just been let out of lunch and were getting some fresh air. As we made our way across the courtyard we could hear the voices “Hey, there’s Mattie!” and “That’s Mattie!” We were quickly surrounded by scores of kids wanting to take her picture. It was great to see how excited all of the kids were to get to see Mattie-especially knowing how much effort they had all put in to help our little girl. She was a rockstar!

Once we made our way to the cafeteria, two classes of about 25 kids each were led inside. Several teachers and school administrators were there as well. Again, the kids were excited to see Mattie and were taking her picture, commenting on how cute she is. After everyone sat down, a young girl with cerebral palsy used her walker to come over and give us an amazing gift.

The girl who presented us with the check had told her parents about the fundraiser and they had also decided to come to the party. It was interesting to hear their perspective on raising their daughter and some of the difficulties they had overcome. They told us that Mattie had a lot of the same mannerisms as their daughter and that their daughter didn’t speak or walk until she was 6 years old. Everyone says not to compare kids with CP because no two kids or their circumstances are the same, but it is difficult not to. While it was exciting to hear a similar story as ours and where they are now, it also put into perspective the long road we have ahead of us. This is part of the emotional back and forth parents of a special needs child have to deal with.

Going to the school to see all of the kids was such an amazing experience and very uplifting! With all of the money these kids raised we have decided to bring Mattie back to the ABM practitioner in New York City that we had so much success with this past summer. Thank you Ms. McCallum, Ms. Emison, all of the teachers, administrators and of course, all of the kids for your amazing efforts! We are truly blessed to have you be a part of our journey.

* We took some amazing pics of the ice cream party but for privacy reason we are not going to post them… Instead enjoy some pics from my “photo shoot” with Mattie and her BIG donation check 😉

 

Another Opinion

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Last week I was feeling nervous about Mattie’s upcoming surgery. I had opted to not get a second opinion, but of course at the last moment, I changed my mind. I was able to get in with another highly recommended ENT doctor. I took Mattie last Wednesday. Dr. H could not find anything wrong with Mattie’s ears. They looked fine!! In my mind I was saying “are you kidding me? What if I went through with this surgery for no reason?” Now more questions had to be answered. Dr. H decided to do another hearing test right on the spot. For the second time in 4 weeks, it was concluded that Mattie had hearing loss and her ear drums were not moving. Mattie’s eustachian tubes are not working property. Dr. H’s opinion: tubes in and adenoids out. I left there feeling better about this surgery. For peace of mind, it was the best $35 I’ve spent in a long time!

Mattie’s surgery is tomorrow at 9:45am. I know this is a common surgery for kids but I am still nervous. Lots of positive thoughts and prayers are needed. Please and thank you. 🙂

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The Price of Success

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In a recent post we discussed the differences in traditional therapy (OT/PT) and ABM and the resulting clash of theories. The simplest way I can describe the difference is that the traditional theory wants a special needs child to mimic the development of a healthy child in milestones and timelines, while ABM focuses on the child’s current capabilities regardless of what they “should” be doing. This means that while OT and PT want us to put Mattie in the standing position on a regular basis, using her walker to practice walking, ABM doesn’t want us putting her into any position she can’t get into by herself, including standing. This dichotomy often puts us in a position of having to decide between the two theories and the multitude of therapists helping Mattie. This is not the only source of doubt and second guessing for Jess and I.

Like everyone, we have a finite amount of resources. While traditional therapies are covered by insurance, alternative therapies like ABM are not. There are other alternative therapies that we would like to try as well, cranial sacral massage (we did this for a while, stopped, now we are thinking of starting again) and hyperbaric oxygen therapy (HBOT) are two which we have discussed. In addition, there are some different types of surgeries and treatments which have been shown to help children with high tone/CP, as well as different orthotics-specifically a doctor on Long Island who makes customized AFO’s which some other parents we know rave about. This leads us to the question “is this the best use of our money?”

So far we have devoted most (if not all) of our money to ABM. We’ve done this because we believe in its benefits and we believe it has helped Mattie a great deal. This doesn’t mean that something else won’t help her, which is where the difficulty lies. As the money spent on ABM adds up and zero’s are added to the total amount we have spent, it is difficult not to second guess yourself. Would that money be better spent on HBOT? Is it worth the money to fly up to Long Island and get Mattie fitted for special AFO’s? Answering these questions becomes difficult when you realize that our resources are a zero sum game; spending money on a particular surgery is going to mean that we don’t have enough to go to the ABM center in California for therapy. More of one equals less of another.

For me, the questions and doubts can add up and sometimes result in feelings of guilt and inadequacy. As a father, I feel responsible for providing for the needs of my family. What kind of father am I if I can’t give my daughter everything she needs to have the most normal life possible (whatever that is)? What kind of man am I when I have to ask people-family, friends, even strangers-for money to help me take care of my daughter? This whole experience is incredibly humbling.

Jess and I are extremely lucky to have such a generous group of family and friends. We realize there are families out there with children that have more difficulties than Mattie and fewer resources to turn to for help. And so, at the end of the day we go to bed feeling fortunate. Fortunate to have such a large group of doctors, therapists, practitioners, family and friends to turn to for help. And ultimately, fortunate to have Mattie, secure in the knowledge that we have done everything we can to help our daughter, and will continue to do so.

Good morning Momma!

I am learning to get my legs underneath me…

and to lift myself up…

and to almost sit up, all by myself!!

Muffled

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Last week I posted on Facebook that Mattie was going to be able to cross another doctor off her “amazing long list of doctors and specialists”. Umm I was wrong. Mattie did not pass her hearing test last week. The beginning of the test was fine, but when the softer tones started, she was not responding. I knew it right then since I was holding her in my lap. It was both shocking and frustrating. My first thought was that fluid was in her ears although she had no symptoms of being sick or having allergies. Her eardrums were not vibrating and moving like they should. As soon as I left the audiologist, I called our pedi to try and figure out what was going on, and went in the following day. We started Mattie on allergy medicine (in case that was the cause) but I knew in my gut that it was something else and called the Ears, Nose and Throat doctor and made an appointment.

I read the audiology report from last week while at the ENT doctor, who by the way, was just added to the “amazing long list of doctors and specialists”. Hearing Loss. I knew she failed the hearing test, but to see it written down on paper for some reason just makes it real. Before I go on I will let you know that yes, Mattie can hear. Whatever is going on is making it so that Mattie hears muffled tones. It was explained to me as needing to pop your ears (like when on an airplane or high altitudes) but not being able to pop them. …

X-rays were taken and the recommendation is to have tubes placed in both ears and to remove her adenoids as well. Apparently Mattie has negative pressure in her middle ear which is causing the hearing loss. Putting in tubes will allow her to hear clearer and removing the adenoids is a longer term solution.

Now the question on my mind is how could I not have realized there was an issue? The ENT Dr mentioned that she breathes through her mouth and asked if this was common… ummm crap, no, I haven’t noticed! Should I have? I never really paid attention to that or to anyone’s breathing characteristics. None of the doctors on the “amazing long list of doctors and specialists” has ever mentioned this to us. She passed her hearing test this time last year. How long has this been going on? So this gets me to thinking… could this be why she does not talk?? Why she is verbally behind?? I am grasping at something, anything to make me feel like there could be a solution besides the normal “she has CP, she was a preemie, lets wait and see” comment that we get ALL THE TIME.

Soooo heading in for surgery in October 😦

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What exactly is cerebral palsy? How does this effect Mattie?

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Today is World Cerebral Palsy Day, the first one of its kind. To me this is a day to spread awareness, love, and hope. I know that most people don’t know what cerebral palsy really is. Heck, I didn’t really know until Mattie was diagnosed with PVL.

Mattie has been diagnosed as having moderate spastic diplegia cerebral palsy. Broken down this means that Mattie has brain damage that affects the way her brain controls the muscles of her body (cerebral palsy). Mattie’s legs have a tendency to be tight and stiff, which can limit movement. Her arms and hands are normally loose but the range of motion in her arms are limited (spastic diplegia).

What does this mean to me, us, her…
Mattie still can’t sit up, crawl or walk (she is 1 yr 5 mo old), but she is a bad ass roller! Her smile is infectious and when she blows me a kiss my heart melts a little. She works hard everyday learning and becoming more in touch with her body. This girl is one tough girl. I know our perseverance will rub off on her. We teach each other to be kind, compassionate, strong, courageous, ambitious, and hopeful. We take things one day at a time, one milestone at a time. We are learning and growing as a family with love and a little girl leading our way.

So… take a moment to read a little about CP

What is Cerebral Palsy?
Cerebral Palsy is the name given to a condition which affects the way the brain controls the muscles of the body. This results in difficulties in movement and posture. Cerebral Palsy has different causes, and affects each person differently.

What causes Cerebral Palsy?
Cerebral Palsy is the most common physical disability in childhood. It is estimated 10,000 babies born in the US each year will develop Cerebral Palsy and that 764,000 children and adults in the United States have one or more of the symptoms of cp. The condition is not hereditary and there is no cure. Many causes of cerebral palsy are still not known or understood. Injury or changes to the developing brain are associated with Cerebral Palsy.

Is Cerebral Palsy curable?
There is no cure for the developmental brain damage that causes Cerebral Palsy. Therapy, however, can help improve muscle function and coordination. Studies have found that children who receive early therapy are more likely to lead a more typical and improved quality of life. Recent advancements in neurological studies have vastly expanded knowledge of brain plasticity (the brain’s natural ability to form new connections in order to compensate for injury). Scientists have learned that the brain continues to reorganize itself by forming new neural connections throughout life.

Common Characteristics and Types:
– Persistence of primitive reflexes
– Involuntary movement
– Disturbance in gait and mobility
– Muscle tightness or spasticity
– Impairment of sight, hearing, or speech
– Seizures
– Difficulty in swallowing, feeding and problems with speech
– Learning and intellectual disabilities
– Abnormal sensation and perception

Cerebral Palsy can be grouped into three main types.
Spastic CP is the most common type of CP. Spastic muscles are tight and stiff, which limit movement. Spasticity may be very mild and affect only a few movements, or very severe and affect the whole body.
Athetoid is characterized by tremors, unsteadiness, lack of coordination, and constant movement. About 10% of children with cerebral palsy have this type.
Ataxic CP is the least common form of cerebral palsy. Ataxia means having a lack of balance. They usually have low muscle tone, a staggering walk and unsteady hands.

Specific words are used to describe the parts of the individual’s body that are affected.
Diplegia: Both legs and both arms are affected, but the legs are significantly more affected than the arms.
Hemiplegia: The leg and arm on one side of the body are affected.
Quadriplegia: Both arms and legs are affected. The muscles of the trunk, face and mouth can also be affected.

(source: United Cerebral Palsy: http://www.ucp.org/)

“World Cerebral Palsy Day, on September 4, 2012, is the world’ first! It will change the lives of people with cerebral palsy (CP). The theme for this unique day is ‘Change my world in 1 minute’. There are 17 million people around the world with cerebral palsy. A further 350 million people are closely connected to a child or adult with CP.
This website is a forum for people with cerebral palsy to express what they need to make their life more independent or more rewarding. The website also gives people with CP the opportunity to make these ideas a reality.”
Please go check it out here: World CP Day

Mattie and Joba taking part in Hope for Mattie’s World CP Day fundraiser!

New York, New York

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Jim:
At the end of our family vacation in Albany, we placed our son Joba on a plane with his grandmother and headed to NYC for 3 days of ABM intensive therapy sessions with Marcy. Marcy is one of the most advanced ABM practitioners we have brought Mattie to for therapy.

Jess:
We stayed 2 nights and had 5 sessions with Marcy. Marcy has come highly recommend by several other moms and of course our local ABM practitioners. Jim and I were not sure what we were in for but we knew that we had to take Mattie to see her. This trip was well beyond our means and it was only able to happen thanks to all the amazing people that have helped us on this journey.

We stayed on the Upper West Side of Manhattan. I was excited to stay in this area since it was a new area to me. I loved everything about it. It was very residential. We were a block from the Fairway Market which has an entire 2nd floor dedicated to only organic food (I was in love). We were a few blocks from central park and could walk to each ABM session. Our plan was to avoid the subway, buses, and cabs. We knew that Manhattan is not very handicapped friendly as far as transportation goes, so we wanted to be able to walk everywhere we needed. This trip was for Mattie and not for us, so the extent of our sightseeing was Strawberry Fields in Central Park.  It was perfect.

Jim:
We arrived on a Thursday and our first ABM session was scheduled at 4 in the afternoon. Typically Mattie is a lot more manageable in the morning and Jess and I were concerned that being in the car for the 3 hour drive to the city would render the session useless. Upon arrival, Mattie immediately connected with Marcy’s calm demeanor and enthusiastic encouragement. I was amazed at how calm Mattie was while Marcy gently moved her and studied her overall movement patterns. Marcy asked a lot of questions regarding Mattie’s previous experiences with ABM as well as the different things we did with her in traditional OT and PT therapies. While we talked Marcy continued to push and prod (for lack of better terms!) Mattie in different ways until, quite suddenly, the range of motion in her hips drastically increased. To our amazement, in that first session Mattie was able to sit “cross legged” or “Indian style” (I know that’s not a PC term, but I don’t know what else to call it) for the first time!

Jess:
We had been working with her sitting in the “W” position so I think that coupled with this ABM session, her brain made a connection. It was amazing to see this WOW moment. Jim and I left there that day with a spring in our step. We knew big things were going to happen on this trip.

Jim:
While waiting for the elevator to leave, Jess and I decided we had to find a way to get Mattie back to see Marcy again in the future

The remaining sessions were very similar to the first. Mattie’s connection with Marcy was amazing to witness. Mattie was fully aware of what she was doing, you could almost see her actively learning. She was calm and her movement was more fluid than usual. In one session Marcy worked on Mattie’s back, ending with Mattie being able to sit more upright and with more balance than usual. In another, Marcy placed Mattie on her back and encouraged her to push off her feet in order to move her body along the table in the direction of her head. She not only was able to do this but was able to lift her pelvis off the table in the process-another form of movement Mattie had never experienced.

Jess:
We left there with lots of new information and some new things to be doing at home with Mattie. Now the question that comes to mind is how can we get back there??? Even two weeks later, Jim and I are still excited to see the changes in Mattie.

Jim:
Mattie has continued to show improved range of motion in her hips, which in turn has allowed her to increase her balance while sitting. She has also continued to lengthen through her back and has started to avoid some of the small, improper movement patterns caused by her high tone.

Jess:
It goes well beyond these movement milestones. Mattie’s cognitive skills have really emerged the past month. Mattie can now blow kisses, claps her hands, knows where her toes are and gets them, and as of this week I think she is signing the word ‘more’.

Jim:
She has been copying people’s movements and sounds a lot more lately. She regularly waves to people (whether the timing is appropriate or not) and just yesterday she tried to clap her hands while watching us do so. She has also been mimicking the sounds we make and has finally been able to say “mama”, although indiscriminately.

Jess:
(my heart melting).

I am confident that we are on the right track with Mattie. It is hard to deny the changes that are happening to her. It is a combination of ABM, traditional therapies, having a fantastic nanny, and huge amounts of love and dedication from us, our family, friends, therapists, practitioners, and perfect strangers.

Jim:
These recent improvements in movement and cognition have really made it an exciting time in Mattie’s life and I feel so fortunate to have the opportunity to be a part of it.

Jess:
As I sit here in Gainesville finishing up this post (yes we are back for more ABM), I reflect on just far we all have come. Jim and I have both grown, not only as parents but as individuals looking for answers and finding them in a little girl who lights up our heart with her smile. Although this may not be the path I would have chosen for myself, I know it is the path that I was meant to take.

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A Nanny’s View

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When I first met Mattie she was four months old, and I had no idea what I was in for…

At the beginning, Jess and Jim discussed with me the unknowns and the concern of what Mattie’s future would be. There was no roadmap as to what progress could be expected, what milestones would be reached, or how Mattie’s journey would unfold.

From the information presented to me I tried to understand what challenges not only Mattie would face, but Jess and Jim as well.

I’ve worked with Mattie and her family for a year now, and as with all children it seems it has just flown by. In that short time I have seen so many changes in her. She seems more comfortable in her own body. She is curious and playful. She laughs constantly and for some reason thinks it’s hilarious when she (or anyone else for that matter) sneezes. Mattie can roll, hold herself up on her hands and knees, and has more control of her head and upper body. She even took steps in one of her occupational therapy sessions! Assisted steps now, but what does her future hold?

I can hardly imagine the struggle Jim and Jess have when trying to choose what the “right” thing for Mattie is. There are so many options, so many different ways of thinking when it comes to treatment and therapy for her. I can only hope they find some comfort in the “little things” that everyone around Mattie gets to see everyday and have confidence that they are on the right track.

Although I am not a parent, my previous childcare experience exposed me to the cognitive and physical motor skills that develop on a rather expected course. Mattie is on her own schedule, and that assures one thing. Nothing Mattie does will be expected. No milestone will be overlooked, and everything she accomplishes will be extraordinary.

So like I said before, I had no idea what I was in for. On my first interview, when Jess and Jim first described Mattie and her journey, which had really just begun, I knew I was up for the care Mattie needed, but I never knew I would gain so much by just being a part of her life. “Hope for Mattie” could not be a more fitting title. I have nothing but hope for her. Hope that she will continue to learn, continue to laugh, and continue to improve. Also I truly hope one day Mattie comes to realize and appreciate the continuous outpouring of love and support that comes not only from her parents, but her entire family, and really anyone who meets her. (Come on, how you could not love that FACE!?)

So if you asked me what it’s like to work with Mattie? It’s nothing short of inspiring. Mattie’s story is just beginning, and I can’t wait to see what happens next. I feel blessed to be able to share in the joy that comes from everything she does.

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World Cerebral Palsy Day – September 4th

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With the first annual World Cerebral Palsy Day fast approaching, I know you are wondering how you can participate and help Mattie. For those of you who work in an office or administrative setting where business attire is the norm, dressin down for charity could be just the project for you!! Tell your employer why this cause is near to your heart and ask to join the 2 organizations who have already committed to doing a “$5 jeans day” on September 4th to benefit Hope for Mattie! Jump on board to celebrate the first ever World Cerebral Palsy Day and help make a difference in Mattie’s life!!

Message or email us at hopeformattie@yahoo.com for details. We have several types of awareness materials to help spread the word. Thank you!

Noses and Glasses

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We have had a busy June and July. August is looking pretty full as well. Traveling for ABM is really taking a chunk of our free time. Since the last update in June (First Steps), we have done 10 ABM sessions with another 5 more on the schedule for July!

Mattie is starting to have better balance, she is using her hands to balance herself, she has added Na-Na-Na to her vocabulary, she is eating table food (yea no more pureed-pain-in-the-ass-food), she can grab food and feed herself (although she misses ½ the time), she officially knows where her nose and belly are and best of all, she is reaching up to be held (heart melting) and gives us “noses” (eskimo kisses). Although she still can’t sit on her own, I was able to take her grocery shopping for the first time this week using an actual shopping cart!! This should not be a big deal for most people, but it was to me. A few SNM suggested that I use sugar bags or water to keep her from falling over, but I decided to wing it and just have her hold on (for dear life) and for the most part she did really well  (she only fell over twice!!).

As we continue with ABM, PT, and OT, we are finding that even though she is behind, she is making slow and steady progress. All of our time and effort is really paying off and that is what gives me motivation to continue this crazy hectic schedule.

We were officially released from Mattie’s GI doctor. Yea!!!! Another ‘ologist crossed off our list! Mattie is back on the growth charts and at her 15 month checkup last week she weighs a whopping 19 pounds 14 ounces! She is in the 40% for height and 25% for weight. We are back to every 3 months with her pedi!

We saw Mattie’s neurologist this month. He thinks she is making progress and has pushed our appts to every 6 months rather than every 3 months. He had nothing new to tell us and we had nothing new for him. He is old school and some of the alternative therapies we are doing with Mattie he has never heard of. I have been thinking about switching neurologists, but he is one of the best in our area. I am not sure that a new doctor would really shed any light on Mattie and her PVL since all kids are different, so that is why we have not made the switch or even gotten a 2nd opinion.

One area that I have gotten 3 options on is her eyes and vision. We saw Mattie’s eye doctor this month and let’s just say that we are no longer just “waiting”. As you know her eyes will occasionally turn in. This does not happen all the time and most people may not even notice, which is why we have been holding off on surgery. We started patching again. This time it is her left eye. Dr. W thinks that her right eye is now the weaker eye (we were patching her right to fix her left) and Dr. W wants Mattie in GLASSES!!! I knew this was coming. We went home and took out the lenses of her sunglasses to see how she would do with wearing glasses since we were advised that if she would not leave them on then we should wait on the glasses. She immediately takes them off. I can’t even get a picture of her wearing them! So… I just bought an eye glass strap in hopes that she cant rip them off. I am waiting for that to come in the mail before we give up on this eye-dea 😉

Perseverance and Determination

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Every now and then I get sucked into the milestone checklist. I did it today. Mattie just turned 15 months old. When we adjust for her prematurity that technically puts her at a 13 months old level. So I decided to look at the 1 year milestones again since I have given her a few months to “catch up”.

What most children do at age 1:

Social and Emotional

  • Is shy or nervous with strangers – Yes
  • Cries when mom or dad leaves – Yes
  • Has favorite things and people – Yes
  • Shows fear in some situations – No
  • Hands you a book when he wants to hear a story – No
  • Repeats sounds or actions to get attention – No
  • Puts out arm or leg to help with dressing – No
  • Plays games such as “peek-a-boo” and “pat-a-cake” – No

Language/Communication

  • Responds to simple spoken requests – No
  • Uses simple gestures, like shaking head “no” or waving “bye-bye”  – No
  • Makes sounds with changes in tone (sounds more like speech) – No
  • Says “mama” and “dada” and exclamations like “uh-oh!” – No
  • Tries to say words you say – No

Cognitive (learning, thinking, problem-solving)

  • Explores things in different ways, like shaking, banging, throwing – Sometimes
  • Finds hidden things easily – No
  • Looks at the right picture or thing when it’s named – No
  • Copies gestures – Sometimes
  • Starts to use things correctly; for example, drinks from a cup, brushes hair – No
  • Bangs two things together – No
  • Puts things in a container, takes things out of a container – No
  • Lets things go without help  – No
  • Pokes with index (pointer) finger – No
  • Follows simple directions like “pick up the toy” – No

Movement/Physical Development

  • Gets to a sitting position without help – No
  • Pulls up to stand, walks holding on to furniture (“cruising”) – No
  • May take a few steps without holding on – No
  • May stand alone – No

So we failed…pretty miserably at that. It is not surprising but it still hurts. I want to make sure that I am doing everything I can. So I read A LOT, I ask A LOT of questions, and I try and learn from other moms who have traveled this path already. I know we posted a video of Mattie taking steps, and yes we are very excited that she has the concept down of one foot forward, but she is no where near close to walking. She can’t even sit up or crawl! I think she gets frustrated too. When she is lying down on the floor, she struggles to sit up and I can see the determination in her face but time after time she fails, then she gets frustrated and starts to cry. It is heartbreaking to watch.

It is almost incomprehensible how easy it is for us to move yet it is so hard for her. Language/Communication is starting to play a bigger role in our lives. We have been doing sign language with her. Basic signs like eat, more, milk, bath… but she has not used any of them. She babbles more and more each day, but nothing like what she should be doing…. Ah there I said it “should be doing”. Damn these milestones charts and should be’s… I hate it but every now and then I need a reality check. It is not always butterflies and rainbows. This is the cold hard reality that I sometimes have to check myself with in order to keep moving in the right direction and persevere. Hmmm…

Persevere: to persist in anything undertaken; maintain a purpose in spite of difficulty, obstacles, or discouragement; continue steadfastly.

Determination: the refusal to let anything prevent you from doing what you have decided to do

Maybe with Jim and my perseverance and Mattie’s determination we will one day be able to cross off every one of these stupid 1 year old milestones!

Steady as we go my friends.