Category Archives: Uncategorized

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.

Anabella

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A few weeks ago Jess and I went to a conference in Orlando for families dealing with disabilities. There were many different hour long courses covering a wide range of topics, from tax planning to how to emotionally cope with having a disabled child. For most of the day Jess and I went to separate meetings, trying to get to all of the classes we thought would be useful. It was the first time we had gone to anything like this and I have to admit, at times it was awkward. I didn’t grow up around people with disabilities and I have not had a lot of opportunities to meet and interact with people with disabilities in my life.

The last session of the day, we decided to go to a roundtable for cerebral palsy (CP). We didn’t know what to expect, but it sounded like a good opportunity to learn from other people dealing with the same disability that we were. By the time the session started there were about 50 people in the room. Most were parents of kids with CP and some even had their kids there. What first struck me was the vast array of handicapped equipment being used, mostly to help the person get around on their own. This is something Jess and I have talked about; what kind of assistance Mattie is going to need as she grows and we become unable to simply carry her everywhere.

This class was a bit different than the others. Instead of a person teaching a topic, this class was more of a “meet and greet” with other people living and dealing with CP. The organizer of the class had us form a big circle with the chairs in the room and prompted everyone to talk amongst ourselves. A couple quickly stood up and announced that they were passing around a notepad and for those who were interested to add their name and email address to the list. In the next couple of days they would be sending out a mass email with everyone’s information in case you met someone you wanted to keep in contact with. Jess and I added ourselves to the list as it made its way around the room.

The group quickly broke into several conversations with Jess talking to a couple of women next to her while I introduced myself to a young couple sitting next to me. About half an hour into the session, I looked across the circle and noticed a middle aged woman in a wheelchair sitting by herself. One of the difficulties of being the parent of a child with CP is mentally dealing with an unknown future. Will Mattie be able to walk? Will Mattie be mentally handicapped? Will Mattie ever have a job? Live on her own? Fall in love? Get married? Not having been around people with disabilities, I had no idea if someone with CP can have an expectation of any normalcy. This seemed like a great opportunity to see what kind of life someone with CP lives. I got up, walked across the room and sat down next to her. She politely smiled as I introduced myself and asked if she would tell me her story.

Her name was Anabella and she was born in a rural part of Colombia. There were difficulties during her birth and when she started missing some developmental milestones, her mother traveled to Bogota´ to consult a doctor. She was diagnosed with CP when she was one. At five years old, she took her first steps. She first learned to walk with a walker, then a cane, eventually becoming able to walk on her own for short distances. She had graduated college with a degree in industrial engineering. At 25 she moved out on her own, becoming completely independent. She is married. In her early thirties she had an accident while grocery shopping. She fell and broke her leg in 2 places. It took her over 2 years to teach herself how to walk again, however, the pain from doing so led her to living in her wheelchair. Anabella spoke about her life with a big smile on her face. She said that people often asked her how she was able to cope and keep such a positive attitude about life; she admitted the question confused her. To her, she was lucky to have the capabilities she had and to be living such a fulfilling life.

Since the conference I have thought a lot about Anabella. She gave me a picture of what a successful life could be for Mattie – what I could hope for. A few days after the conference I brought her up in a conversation with Jess, saying that she would have been such a great role model for Mattie. Jess and I laughed as I suggested that Anabella didn’t really exist and wasn’t really in the room that day – that I had imagined her because I needed to. Jess lightheartedly assured me that she had seen her there too.

A few days later we received the mass email from the couple detailing everyone’s name and email. At the end was a note asking if anyone had Anabella’s contact information. Apparently she had added her information to the list, but her email address was incorrect. They had tried every reasonable variation of her address but were unable to contact her. Sometimes people come into our lives at opportune moments and give us exactly what we need, only to disappear as quickly as they arrived.