cerebral palsy

Everett Therapy Update – Walking with Upsee

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Everett has been working on walking with his ABM physical therapist (using the Upsee). They have been trying it out without the shoe attachment (which would lift his foot when she lifts her foot). Everett has been lifting his own legs and feet really nicely — the Upsee supports his body at the pelvis so it’s not like he’s bearing much weight on his legs, but he’s getting the concept of the stepping motion.

The shocking thing is that he can count up to eighteen or nineteen now. Once Carla gets him started he will say the next number all the way up. He’s supposed to correlate one number with each step, but he just gets so excited he jumps ahead a few numbers to one step. Eight seems to be his favorite number – he shouts it with gusto!

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My life is about to get a whole lot more complicated – DEPLOYMENT NEWS

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Eleanor is cruising now – she went all the way around the table. She will pull up on anything and everything. The problem is when she pulls up on a moving object – like a person’s leg and the person doesn’t realize she’s there. IMG_2306

Adelie-wellie takes very good care of her babiesIMG_2307

Everett got glasses. He actually got glasses about two years ago, but he never wore them. When a second eye exam yielded a drastically stronger prescription, we decided to try again. So far he is doing really well with keeping them on – as long as he is supervised. As soon as we turn our backs, however, they disappear. We are hoping that they will help him brain process what his eyes bring in and maybe even motivate Everett to be more mobile (i.e. be motivated to go over to something that he could never see before). Everett’s speech continues to improve each day. We are continuing to optimize his supplement regime (now we are starting glandulars!) and we are planning to start hyperbaric oxygen chamber sessions in a few weeks.

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So, my big news is that Kent might be deploying for six months on a humanitarian mission – leaving in less than six weeks. It’s complicated, but we don’t know for sure – with the military nothing is really certain anyway. Kent and I have never been separated for more than two weeks in the eight years we’ve been married. And, our part-time nanny stopped working for us last week! Nothing bad happened — she was asked to work full-time for the other family she works for and they need her more than we do (we originally hired her to help me – and Everett –  right after the baby was born, but it just worked so well for her to take Everett to therapy that we kept it up). It is tempting to try to feel bad for myself, but there are many things to be grateful for. One, that we haven’t had a deployment up to this point, which has allowed us to invest in our marriage while it was in its infancy. Two, that it is a relatively short deployment – many people we know have deployments of one year or more, not counting many months of out-of-town training before-hand. Third, the work should be interesting and enjoyable for Kent – Kent took a class on tropical medicine and he expects to see a lot of that on the deployment. Also, if God wants to use us on the mission field (and we hope He does) after Kent’s time in the Navy, this would be useful preparatory work. Finally, God has always been faithful, sufficient, and good in the past, so I know He will continue to be exactly what He is – even while Kent is away.

We’ll see how long I can keep up with Everett’s therapy intensives every week (2-4 days every week) – our nanny had been driving him since we had Eleanor. It is challenging for me to get all four of us out of the house by 7am with breakfast and snacks for everyone, diapers for two, changes of clothes for two, Everett’s therapy stuff (braces for ankles and elbow, restraint for left arm, etc.), books and baby dolls to keep Adele occupied, toys for Eleanor, etc., and then being out of the house for four to five hours each day (which sacrifices Eleanor’s morning nap). . . . I know other moms do even more than this regularly, but I really prefer to not leave the house during the day at all.

I’m looking forward to knowing and loving God more during this upcoming challenge!

Everett videos

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This first video is of part of a session with E’s physical therapist Carla Reed. She is using the Upsee to work toward walking. It allows Everett to have the sensation of some weight-bearing, but she is bearing most of the weight, which prevents him from “compensating” – or having to contort his body in such a way that he learns an awkward posture (which would be problematic because compensatory postures are nearly impossible to “unlearn” down the road).

In the next video, I say that Everett is feeding himself because before I started filming Everett was holding the cup of yogurt and bringing it to his mouth by himself. But, I didn’t actually get that on the video. You’ll just have to take my word for it =)

 

 

Bonding with [not-yet-born] baby #3 (therablogging from the past)

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I came across this post in my drafts folder and I don’t remember why I never published it. Maybe I was feeling too emotional about the possibility of losing our baby? Well, our adorable Eleanor Chara is three months old now and so far she’s totally healthy, so I thought I’d go ahead and post this (belatedly). I guess I’m hoping that it might help someone else who might be feeling the same way to not feel so alone.

date: April 2014

I have been working really hard to get our house “settled” or “ready” for the new baby, which I think is part of “nesting” — but I don’t feel like I have really “bonded” with this baby yet. With both Adele and Everett, I felt like I knew them a little when they were born. This time, despite my alarmingly huge belly, I don’t even feel like we are actually going to have a real baby. I think it is because we had some drama with Everett that I am really aware that things can go wrong, that there are no promises that this baby will live or be healthy, so I think I’ve been a bit detached. Early in the pregnancy (although I didn’t really talk about it with anyone) I kind of assumed I would have a miscarriage. I’ve never had a miscarriage before, but I just felt unbonded to the baby early on so I thought it was God’s way of making it easier on me when the baby died. Well, here we are, just two days from my due date, and the baby is still here and kicking. For those of you who don’t know me in real life or don’t know the story, when Everett was one month old, he was crying uncontrollably and had a really low fever – but enough to be a concern in a baby so young – so we took him to the ER. That was Thursday night and they couldn’t find anything wrong with him so they sent us home. The next day we took him to the pediatrician and he just wasn’t acting right – lots of crying, wouldn’t eat, etc. They ran some blood tests and did a CT scan. The scan showed a bleed in his brain and they told us they were going to helicopter him to Children’s Hospital. They didn’t really want us in the helicopter (I might have been a little bit hysterical), so we got in the car to meet them there. On the way, Everett stopped breathing and had to be intubated (which also means majorly sedated). The next morning he started having seizures so they performed a craniotomy and tried to evacuate the blood that was putting lots of pressure on his brain. They told us that there were a lot of risks for brain surgery on a baby so small — they said it would be very easy for him to bleed out because it’s very difficult to get blood in him as fast as it comes out. Well, our little Everett Dunamis (Everett means brave strong boar and Dunamis means power) was powerful, brave and strong and LIVED through the surgery! Long story short, lots of drama, lots of doctors, lots of tubes and machines hooked up to our new little baby for two weeks until we were released from the hospital. And it’s not like everything’s fine now, you know. I mean, yes, everything is fine, but Everett has cerebral palsy and nobody knows how much it is going to affect him as he gets older. He’s almost three and still not sitting (although he is getting closer!) and not crawling (although he is doing a version of an army crawl!). Everett does make progress every day and he’s such a sweet boy! I love him so much and I am so grateful that I get to be his mom. I am just relating this because I’m trying to figure out why I don’t really feel pregnant this time around – therablogging =).

I don’t know if other moms who have had children with health issues have felt this way with subsequent pregnancies or if it’s just me. In fact, maybe it is all in my head, but I notice that most moms who have special needs kids don’t have any more children – maybe because they want to give their full attention to the special needs child or maybe because they are afraid that the next baby could have problems too. Or maybe they wouldn’t have had more kids even if the child didn’t have special needs. I am trying to have the perspective that Everett is part of a family, so not everything can or should be about him. I try to do as much as I can for him while balancing that with the needs of the rest of us.

For my whole life, I’ve been an eternal optimist and honestly never even considered the possibility that anything bad could happen in my life. I took it for granted that my children would be born completely healthy and everything would be peachy! Well, I still consider myself an optimist, but I think I’ve been mellowed out a bit by some challenging circumstances. Because I know that God is good and He works all things in my life for good, I don’t have any fear for the future. I know that He will still love me and take care of me. And I also know that God loved Everett even more than I do (which is a LOT!) and God will always take care of him.

Then again, I could just be analyzing this way too much. It could be that I can’t picture the new baby because we didn’t find out the gender this time, so I don’t know the baby’s name, etc.

Everett is THREE!

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My sweet boy is three. As promised, here’s a photo of him in the birthday crown.

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Everett is the sweetest boy that I know and I wouldn’t wish for any other. It’s hard to explain it but I pray for him to be healed (and pursue healing with lots of therapy) and at the same time I am really ok with him just as he is even if he never gets any better. He is such a lovey boy – he’s always giving kisses and telling me that he loves me (he says “lll” for “I love you”), both in response to me telling him that I love him and he also initiates. He knows to bow his head when we pray as a family. His speech is really exploding – new sounds and “words” every day. He is getting to be a real pro at getting into sitting (and getting back down again) with great posture. He chews his fingers when he’s scared, overwhelmed, or tired. He speaks French (he says “vwah” when he hears “au revoir”) AND Spanish (he says “la” or “la la” when he hears “hola”) in addition to English. He smiles and laughs all day long and he always has a good attitude. I love you, my little Everito!

A little MNRI home program tweak that’s working for us!

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I’ve posted before about how we do Masgutova Neurosensorimotor Reflex Integration for Everett’s cerebral palsy. The home program has been pretty overwhelming for me. I have previously written (HERE) about how we had Barbara (who also helped me around the house – what a blessing it was to have her here!!!) doing the home program on Everett and how that worked really well for us. Well, it worked really well until she left the country to get married. She’s been gone for about a year and we’ve since filled the gap by taking Everett to a physical therapist who is also an excellent Anat Baniel Method practitioner (HERE). She lives an hour away, but somehow the daily two hours of driving plus the almost three hours at her house (two 45-minute sessions with usually a 45-minute break between) seemed more doable to me than doing the MNRI home program by myself (which should take no more than two or three hours total). Well, we recently attended our second MNRI family conference and, with the new baby coming, I am not going to want to drive to therapy as often if I can help it. All that to say, I have been desperately trying to find a way to make this home program work for Everett and for me.

When I have done the home program in the past, Everett would be playing on the floor with his toys and I would pick him up and put him on the massage table to start doing his therapy. Well, I think he resented being taken away from his toys and didn’t really like the therapy either, so he made it really hard to work on him – lots of spasticity (tightness) and fighting me in addition to screaming and twisting. It was the last straw when he bit my hand.

Finally, I had the idea to do the therapy in chunks throughout the day – whenever I could. I grouped the reflexes into three groups: when he’s on his back, when he’s on his tummy, and reflexes that require two people (i.e. wait until Derm Dad gets home). I decided to try doing the “on the back” reflexes at Everett’s changing table because he’s already in that position and I could just add a little bit as much as he would let me. At first, I just taped up all the sheets from my home program notebook, but that looked awful and it was too much to read with a squirmy baby who didn’t really want to be there anyway.

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What, you don’t have a disco ball at your changing table? I bought it for Everett’s CVI (it’s good to connect vision with touch – i.e. see it and then reach to touch it) and it’s really fun when the sun reflects off of it during the day. The main reason it’s there is to distract Everett during diaper changes (and now during therapy) and to keep his hands out of his dirty diaper (TMI?). You just have to be careful because he can get that thing going pretty fast and I did get a fat lip once when I wasn’t paying attention. And did I tell you we’re back to cloth diapers? I had been doing disposables for about six months (I think) because his PT thought it would give him more mobility in his hips, but I didn’t want to do cloth for the new baby and disposables for Everett (and I didn’t want to pay for both of them in disposables!), so we switched back. I don’t think it makes a difference for his hip, but we’ll monitor it.

So back to my therapy sheets, in order to make them more concise and also more user-friendly, I typed out the essential instructions for each reflex pattern. Just the basics: where to put your hands, which way to push/twist/etc., how long to hold, how many times to repeat, etc.. And then (the key for me) I cut out the pictures and pasted them next to the corresponding reflex. I didn’t cut up my actual notebook that I have with the tabs and everything, but I have been to two family conferences, so I have two notebooks. I just cut up some pages from the first one. Derm Dad and I both appreciate having the pictures right there as a quick reminder. I figure, if I can just do one or two pages at each diaper change, we’ll be in business! At this point, I am not worrying about how many times per week I am supposed to do each one (except never more than twice a week for Fear Paralysis), since I am just doing as much as I can.

Much cleaner-looking, right?  I think they’ll look even better once I put them in matching frames.

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And here are the sheets I’ll use downstairs:

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My thought is that I can just sit on the floor while he’s playing with his toys and do whatever he’ll let me do. I won’t be taking him away from his toys, so maybe he’ll be a little more willing to let me work on him??? The partner ones should be pretty doable since we’ll have two people available to sing, and otherwise entertain him.

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If you are a Masgutova family (i.e. you’ve been to a family conference and you already have a family notebook with the reflexes), and you think this would be helpful to you, please contact me and I’ll be happy to scan them and send them (unblurred, of course) to you. However, it would only be helpful if your child is not ready to actively participate because I just used the instructions for passively doing the reflexes. And of course I didn’t include the reflexes that aren’t part of our home program.

So, everything I need to do the whole home program (not including any of the other protocols like tactile, archetype, etc. – so just neurostructural and the reflexes) is on only seven sheets of paper (including all the pictures). That’s doable for me! I think this is really going to work!!! If you try something like this or you have any home program tips PLEASE let me know!!!

P.S. I blurred the images that show or describe the therapy, because it’s copyrighted material. However, if you already have access to the material (you’ve been to the conference), then I have no problem sharing the part that I worked on (making it more concise) with you to help you implement your own home program.

Staying in Maryland, my theological thoughts, and a tiny glimpse of our home

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So, if any readers out there know us in real life, you know that we were expecting to be moving to Connecticut right after Derm Dad’s boards mid-July. Well, there was a whole lot of back-and-forth drama, but then we were told that we were staying in Maryland AND we decided we are staying in this rental house . . . for the next year.

You see, we were told that we were moving to CT, then we heard CT was not going to happen, but we could choose between one of four other places. We furiously researched ABM practitioners in those areas and real estate listings (all those nights furiously searching realtor.com) as well as specialists. Then we found out that we were in fact going to stay right here . . . but, the house we were and are currently renting (with a lease that ended July 2013) was on the market to be sold . . . for way more than we were willing to pay. Oh how we lamented and wept over the prospect of a do-it-ourselves move while Derm Dad was so stressed out about his boards. And then the dilemma of whether to rent or buy, whether to stay in this area or give up the relationships we’ve built here and move to the “farmy” area that beckons to me so sweetly. So when our landlord told us we could stay for one more year, we were thrilled! Even though it was just pushing the inevitable move and decision-making down the line.

I’ll never forget the time that I was talking to my friend Rose and I told her, with great drama, “We are staying here in Maryland.” And instead of shock, she replied, “yeah, you told me that last week.” And then I said, “But we were moving to Connecticut AND then to California since then!”

Fast forward a few months to when we found out we were pregnant and due right at the time of our next planned move (our landlord said he wanted to put the house on the market in April and we are due at the end of April)!

Back to realtor.com I went and I found the perfect house! It is full of character with the same 20-minute commute to Derm Dad’s work (my commute to Everett’s therapy would be only slightly longer than it is now) on TWO AND A HALF ACRES with a RIVER IN THE BACKYARD and A BARN!!!! Oh, and WITHIN OUR BUDGET!!!! We wanted to move now because Derm Dad has three weeks off work for the holidays so we thought we could do a laid-back move before the baby comes rather than have to scramble to move with a newborn – because this house is being sold (for real this time) in the spring/summer of 2014.

But, when we called our landlord to give our notice he got really upset and said that we couldn’t leave the house vacant in the middle of winter when he did us a favor to let us stay instead of making us move last July when Derm Dad was studying for the boards. Even though we have no actual lease with him, we thought he made a good point. So, we are not moving to the amazing house =(

Oh, and our house in Mystic is still vacant and our realtor there recommends we list it – for almost what we owe (to say nothing of our $20K down payment, or the almost $50K as well as blood, sweat and tears that we put into it). If anyone says that real estate is a good investment, I’m going to punch them in the face. So, yes, technically we can afford to keep paying the mortgage for awhile, but it’s just not how either of us had planned to spend our savings and retirement.

Good times, I tell you. Well, good lessons in being flexible anyways. What is being flexible, exactly? I think it is just trusting God. And that is actually an element of submission to God and God’s ways of rocking my world. And that is the challenge, isn’t it? It’s remembering the important difference between OUR PART and GOD’S PART.

I mean, we are supposed to plan (choose appropriate doctors, try to find a house to live in, schedule therapy, etc. . . . ) but we just aren’t allowed to get attached to any particular outcome or plan. We need to prepare the horse for battle, but we can never forget that the battle is the Lord’s – i.e. we do the work faithfully, but the responsibility for the outcome is God’s. This is the lesson that I am learning these days. My part and His part. His plan, not mine. And once I can release the outcome that I am grasping so tightly, I can see the freedom in letting God take the responsibility for the outcome. Because if I’m honest I can not handle that responsibility!! I wasn’t built for it. And yet, I feel like one of the unique ways that God has made me is that I’m a visionary. By that I mean that I LOVE to do lots of research and get the big picture so that I can have a framework to filter my smaller decisions through. For example before Adele was born, I had a plan for which child training principles we would use and I knew that we would homeschool using Charlotte Mason before she was one year old. And I do think it’s absolutely critical to be intentional about these kinds of things because otherwise you just make decisions based on the moment and put out fires as they happen – you never make any progress toward a goal because you don’t have any clear goals to work toward. BUT, my problem is when I’ve done all this research, and I have all this information (and hopefully wisdom too), I then think that I have some control over the outcome of the situation and the timing of the outcome.

I’m still thinking about this, so please do share in the comments.

In other news, I made a “standing desk” since I’ve read about the perils of too much sitting, and I really like it. It’s pretty and if my feet hurt I move along to something else (thus keeping my computer time in check).

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