Archive for the ‘parenting’ Category

Early Intervention: A New Journey

February 22nd, 2012

Last week we started our journey into early intervention. And I’m so glad that we did.

My daughter was diagnosed with microcephaly three months ago at her two month well check. Ever since then we have felt extremely unsure about what this would mean for her and for us and what we could do to help her. This week I feel like we began to get some answers, not answers about the future (diagnosis’s, predictions, etc), but answers about the present. We began to get the support that will help us know how to best help our daughter grow and flourish on a day-to-day basis. And (as we’re slowly realizing) those are the answers that really matter.

The whole world of early intervention and special needs services is completely foreign to me and I felt so nervous and unsure as we took our first floundering steps into this new realm. But, once we actually met with our Family Resource Coordinator I felt so relieved and encouraged and grateful that we had been directed to get this help now while Sage is still so young.

The organization that offers early intervention services for birth to age three in our area is called The Little Red School House. They send an occupational therapist to evaluate Sage and meet with us last week. Because we already had a diagnosis of microcephaly Sage automatically qualified for the program and from what I understand the evaluation was more for determining where she’s at developmentally. The whole thing was so much more comfortable and encouraging than I had anticipated. As we had been warned, there was a lot of paper work to do, but most of the time was spend just talking about Sage.

I really liked the approach that The Little Red School House takes to equip and support the parents, believing that the parents know the child best and are in the best position to help the child. I also liked that they don’t want to inundate the families with tons of appointments and lots of different specialists, instead they have one person (our Family Resources Coordinator) who will meet with us regularly (as regularly as we need). And then if their are questions or problems that are better suited for a specific specialist she can take those to her team of specialists at the school house and have them instruct her or if necessary bring them in to work with Sage. I liked that approach a lot, it seemed much less invasive or overwhelming.

I also felt a huge sigh of relief to learn that our FRC is able to offer some alternative remedies and has not only been working in occupational therapy for about thirty years, but also studied massage and acupressure. She said not all of her families want to utilize alternative options, but she wanted us to know about some of the different alternative remedies she could offer. Obviously I am very interested in alternative medicine and some of the therapies she talked about sounded fascinating. For example there was one she talked about where they use a tuning fork and different pitches that corespondent to different meridian lines (like in acupuncture – but without the needles), can’t remember what it’s called though.

Anyway, the whole experience was really positive and encouraging and I’m really looking forward to the support that this organization will be able to offer my sweet little girl over the next three years. Our next meeting will be next week and it’s when we will create our Individualized Family Service Plan (IFSP), which from what I understand is essentially a document stating our desire for Sage over the coming year and a plan to achieve it and what services will help us get there.

I’m excited to start this journey into early intervention. It feels good to know that there are things we can do and tools we can utilize that could help Sage. And it feels good that we won’t have to go at it alone. Someone will guide us through the process from here and help lead us to the best resources for the specific special needs of our baby.

I’m feeling very grateful for these things today.

Rejoicing in the journey,

Bethany Stedman

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Update on Baby Sage’s MRI

February 4th, 2012

Yesterday we made our way to Seattle Children’s Hospital in the dark.

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I hadn’t realized how nervous I was feeling about Sage’s MRI until I woke up in the night to nurse her and couldn’t get back to sleep afterwards. I just stared at her as she slept beside me. I knew an MRI was the next step we needed to take, but the thought of my baby under general anesthesia of course made me nervous.

In the morning before we left I was a flurry of nervous mommy energy, darting this way and that as I tried to get us out the door. I felt so grateful that my in-laws had taken Thad the night before (his first ever sleep over) and I didn’t have to deal with a two year old along with everything else. There have been so many moments lately when I send up silent thoughts of gratitude that we now live close to family for this season of our lives.

And then we arrived at Seattle Children’s.

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And again I said a quick prayer of gratitude that we live where we do. We always had pretty positive experiences with medical things in Prague, and felt well taken care of the few times we went to Prague hospitals for various reasons. But, there is something unimaginably calming when you walk nervously into a hospital building and are quickly greeted by people and signs that speak your language. There was no guess work, there was no translating. Sigh of relief.
But, Seattle children’s wasn’t just a good hospital experience because it was in English. I felt like it was a good hospital experience compared with others in the states as well. Everything was very well organized and structured, the building was clean and even beautiful in places. You could tell things had been well thought through. And well thought though with kids in mind. For example, this was the fun, inviting playground outside our window.

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Most of all though, everyone was just so friendly. People smiled and greeted us in the halls and asked if we needed help finding anything (that never happened in Prague hospitals). The doctors working with us really wanted to put us at ease. The anesthesiologist talked with us for quite a while, answering our questions, explaining what they would do, and even sharing stories about his own kids to help put us at ease. They were all very understanding and helpful.

When it came time they brought us and Sage to a prep area. We were able to hold her hand and be with her as they put her under. It was amazing to me how quickly she fell asleep. She looked so peaceful and still. We both gave her a kiss and then went up to Starbucks to wait.

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We got back to our room about forty minutes after we left her and waited for them to bring her back in, which wasn’t very long. When she got back she had a breathing tube in her nose. They had her hooked up to a machine to monitor her heart rate and all that. They took her temperature and did a heel prick to check her blood sugar. Everything looked good. She looked so small alone in the little bed. She shivered, we tucked the blanket closer around her. She looked beautiful.

They told us that as soon as she woke up we could hold her and I could nurse her. We waited. They said she should wake up soon. We waited. An hour went by. We waited. That period of waiting for her to wake up was probably the hardest for me. I was glad for the equipment monitoring her and that the doctors regularly checked on her. Eventually she woke up and was starving. We cuddled and nursed.

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They wanted to monitor her till 1pm. So we sat and read and cuddled and nursed. Apart from not being completely comfortable those few hours felt a little like a vacation to me. I didn’t have to do dishes, or laundry, or entertain a toddler, or listen to “mommy!mommy!” being screamed at me. Instead I got to just cuddle with my baby and talk and read with my husband for two hours. That part of the day was really nice.

Really the whole experience went as well as it possibly could have. The only negative was that we weren’t able to get an appointment with the neurologist until April. So, as of right now, we won’t know the results of the MRI until then. It’s a little frustrating to have gone through the stress of the MRI and know that there is information available about my daughters condition, but to still not know what that on formation is until April.

We were at least able to get a print out of the report and a cd of the MRI. We are thinking since we have the results we will try and see if we can get into a different neurologist to have someone interpret the results for us sooner. Or…anyone reading this know how to understand brain MRIs??

Whatever happens I find myself being continually reminded to take life one day at a time and to take this change in perceptions and expectations about my daughter one little piece of information at a time.

Rejoicing in the journey,
Bethany Stedman

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Special Needs

January 25th, 2012

It’s funny how sometimes even when you sort of expect something it can still shock you when it happens.

On Friday we braved the snow and slush and went to Seattle Children’s Hospital for another neurologist appointment for Sage. It was the first appointment we had about her microcephaly where the doctor didn’t say, “well, it could be nothing…” the neurologist we saw was thorough, asking a lot of questions and spending a lot of time looking at Sage, checking her reflexes and movements. He was straight forward and clear, telling us that he definitely saw enough to concern him. He told us that her head is now 2.8 deviations and that since her weight and height are on the growth chart it’s called disproportionate microcephaly. He recommended an MRI, saying that it was the best place to start figuring out what is going on and would give us some direction.

And then it happened… He told us he thought we should start having someone work with her and getting her some early therapy. Then he gave us a packet for “children with special needs” It made my head spin…”special needs” I knew Sage had microcephaly. I knew there was a chance that she would have some delays, and although I knew that label was a possibility I hadn’t really imagined it or truly thought of my child as having special needs until that moment.

It was like a reality check for me.

Suddenly I was reminded of when I took a class in college on Teaching Children with Special Needs. I remember feeling convinced during that class, with an irrational intuition, that I was going to have a child with special needs. And I remember begging God to not let that happen. Now I look at Sage and I can’t imagine asking God that I wouldn’t have her and can’t imagine having any other child. But, I still wish I knew for certain that she would be able to live a completely full functioning, “normal” life. But, I knew in that moment that wasn’t a certainty I could have. It may yet turn out that way, but there’s enough concerns that I have to come to terms with the fact that it might not.

I sat there a minute a little stunned still by the term “special needs”.

I couldn’t deny it anymore. I couldn’t justify the fact that she hasn’t met her milestones. I couldn’t keep holding on to the “well, it could be nothing” statements.

All along I have sort of known this was coming. I knew something wasn’t normal. Not in the way you know that two plus two equals four but with an intuitive sort of knowing.

When she was six weeks old I had a vivid dream within a dream where things kept threatening Sage and I had to fight for her and protect her. At the most vivid part I saw a number of wasps and hornets stinging Sage. I woke up still in the dream and preceded to dream that everything that had happened in the dream within a dream was happening in real life. It was after having this dream that I knew we had to schedule Sage’s first well visit with the pediatrician.

Maybe it’s bad for me to say it but I’m glad that we didn’t go in earlier, glad that we had those two months of ignorance, to just be with Sage, bond with her and get to know her. Being able to bond with her without the uncertainties of microcephaly hanging over our head was precious and I’m grateful for it.

But, as we sat with the neurologist I knew that the time of denial was over. It was time for a new season. Time to grow up and face my new reality. Time to do the research. Time to make the phone calls. Time to get the help. Time to do whatever we can to make sure that my special little girl can have the best life possible.

On February 2nd Sage will have an MRI of her head and spine. It will be under general anesthesia. If you pray, pray for her safety, pray that we get the best possible answers, pray that we are able to get the results back quickly (as it is right now our follow up with neurology isn’t able to be scheduled until April – we don’t want to wait that long) and pray that we have no problem getting the MRI pre-approved with our insurance.

Rejoicing in the journey,
Bethany Stedman

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A Reset Button

October 22nd, 2011

When I was younger so much younger than today, I never needed anybody’s help in anyway. But, now these days are gone I’m not so self assured…

Its nap time. Thad’s asleep and Sage is is also drifting in and out of consciousness. As I sit here with images from the morning dancing around in my head I’m wishing I had a reset button. I wish i could change this morning, I wish I could change almost all of the ways I’ve interacted with my son in the past twenty four hours. But, I can’t.

…But, every now and then I feel so insecure, I know that I just need you like I’ve never done before…

As I sit here I kept thinking about these two prayers I wrote when Thad was little. I just read them again and this sentence jumped out and almost screamed at me, “I need you to show me what is really required of me so that I don’t heap unneeded guilt upon my own shoulders or the shoulders of those around me.” I realized as I read these prayers how desperately I need God to infiltrate my parenting, especially in this area of guilt and the expectations I place upon myself.

Help me if you can I’m feeling down, and I do appreciate you being round.

This morning there was a moment when I hid in the bed room and cried for a minute, when I thought to myself, “I need someone to talk me off a cliff…” I almost called a friend, but it was six thirty in the morning and even though my day had started two hours earlier I knew not everyone else’s had, and besides the courage it would take to make that phone call and admit I needed help – not I had needED help, but I need help, right then and there, before sunrise kind of help…well… that’s not the kind of thing you’re really suppose to ask someone for. So, I sent up a desperate prayer, “Lord, help me.”

Help me get my feet back off the ground, won’t you please, please help me.

And slowly, quietly help came, not in the way I’d wanted but in a gentle shifting, it came.

Something sunk in for me in a new way today – the power of the present moment. I was sitting here regretting my actions of the morning, a little upset with myself that I hadn’t worked up the courage to call for help, and I realized afresh that what I was dwelling on was futile and emotionally detrimental to my health. I can’t push a reset button. I can’t change the parent I was in the past…but, I don’t have to let that influence, and even dictate, the rest of the day or the parent I’ll be in the future. I can choose to dwell on my feelings of guilt, to hold up an image of myself as “the worse mom ever”, or I can choose to reset my attitude and focus. I can’t start over, but I can start anew from this moment.

Most days I’m not who I want to be or where I want to be, but I’m realizing (slowly) that I don’t need to be. I am me, here and now, the best me I have ever been, and I am becoming.

…But, now I find I’ve changed my mind and opened up the doors.

Rejoicing in the journey -
Bethany Stedman

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Keeping The Toddler Busy: A New Plan

October 17th, 2011

Yesterday we move out of my parents house and into an apartment where we’ll stay till the end of November. We’ve been dreading being in an apartment with a toddler and baby and no yard or space. Bryan and I are used to living in small spaces and we tend to live a pretty minimalistic lifestyle, but we’ve learned lately that there are some things that make life with an active toddler more manageable. One of those things is space. So, since we won’t have space in the coming weeks I’ve realized I’m going to need some other coping mechanisms to keep my sanity – since I won’t be able to just let him run around in the backyard.

I’ve also realized lately that both my son and I do WAY better when we have some clear structure and routine in our lives. We both like knowing what to expect. I think also with all the change we’ve had lately – a new sibling and living somewhere new every couple of months for the past year and now moving again two more times before the end of the year – more structure would help both Thaddeus and I to feel a bit more secure.

In addition to that I’ve noticed Thaddeus is really wanting and needing some more mental stimulation. He’s started to really take notice of letters. He can sing the ABC’s without missing any letters and whenever he sees the alphabet written somewhere he gets excited and says “ABC!” He loves to count and can count to ten now as well, but I’m not sure if he totally has a concept of what the numbers mean. He doesn’t recognize written numbers, but seems interested in them. I think he would really enjoy and benefit from some more active, focused learning.

So, in light of all those thoughts I’ve decided to put together a more structured schedule for us over the next few weeks and see how it goes. It’s nothing by the clock, more of a rough focus for each day with one daily structured activity and two daily outings of some sort. Here’s what I’ve come up with for this week (of course this is subject to change).

Number of the week: 1
Letter of the week: a
Word of the week: apple

Ideas for incorporating these into our lives: give him one whole apple for snack instead of apple slices and talk about how it is one apple and apple starts with a. When we play play dough make the letter and number of the week. Whenever there is 1 of anything point it out. When out and about point out words that start with ‘a’ and the number 1 when we see them. Make applesauce. Incorporate sign language by signing the word of the week whenever we talk about it.

Monday October 17:

Weekly Coloring Activity: color a cut out of the number and letter of the week & write out the word of the week to put on the fridge
Morning Outing: walk around the neighborhood
Planned Activity: colander sculptures
materials needed: colander and pipe cleaners
Afternoon Outing: library – get books about apples
Prep: freeze discovery ice block

Tuesday October 18:

Morning Outing: breakfast (w/ my sister and toddler?)
Planned Activity: edible finger paints
material: corn starch, sugar, water, food coloring, paper (or powdered milk, water, food coloring)
Afternoon Outing: park (w/ cousins?)

Wednesday October 19:

Morning Outing: (see planned activity)
Planned Activity: nature walk
materials: egg cartoon to collect things in
Afternoon Outing: go to the midwife’s and chiropractor

Thursday October 20:

Morning Outing: walk around neighborhood
Planned Activity: discovery ice block
materials: large block of ice with toys frozen in it, hammer, sponge, other utensils to hit, rub, and manipulate the ice
Afternoon Outing: play date with Melissa

Friday October 21:

Morning Outing: walk to bagel place for breakfast
Planned Activity: apple prints
materials: apples, left over edible finger paint, paper
Afternoon Outing: park (play date?)

Saturday and Sunday October 22 and 23: fun with family and sage’s blessing ceremony. Go to church with sage for the first time?

So, that’s the plan for the next week.

What do you think? Any suggestions for me? Have any of you ever done anything like this?

Rejoicing in the journey -
Bethany Stedman

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