Melody decided to show off for the camera tonight. Her flexibility is pretty incredible. Go Melody!
Thursday, October 28, 2010
Sitting Pretty with my New AFO's
Today we picked up Melody's new AFO's. These are her ankle foot orthotics which will help her feet not to "drop" and give her the support she needs to stand. We picked the butterfly pattern and they really are kind of cute.
The problem right now is they slide right off because of her little chubby legs. So, now we need to go shoe shopping. I think the shoes will help them stay on. I haven't bought shoes as I have been waiting for these to get finished. The orthotics company said they will adjust them to fit into her shoes once we have some.
One postive thing I've noticed is that she is bending her knees in order to try and reach her AFO's. She rarely bends her knees, so if these encourage that kind of movement, that will be a bonuse. The OT wants her to start being more aware of her feet, and having something on them certainly increased her awareness of them, at least by sight.
Wednesday, October 20, 2010
PT and OT and we're OK
Melody is now in the midst of 4 weeks of "active" physical therapy. This means we go 2 mornings a week for PT and one for occupational therapy. Thankfully, OT is right after PT so it saves us a trip. Both the therapists are great, so that is a blessing. We have been through bunches of evaluation and just had Melody's yearly evaluation with the Early Intervention program. They also send a teacher out to our home once a week. So, three mornings a week Melody is hard at work.
All this hard work is definitely paying off. We are working on core strength and today Melody was laying on her belly and pushed herself up to sitting with her arms! We improve her trunk strength by having her sit on a therapy ball and reach for things as she balances. She has pretty good strength already but mostly just loves to bounce on the ball.
The assessments all want to know if Melody waves bye-bye. She has just started doing that some. However, she has been giving high fives much longer. She finally has a word, "hi" and boy is it clear. She babbles a lot, but this is the first one you can identify in context. She has begun clapping her hands, too. At Disneyland last week she was clapping for the Aladdin show and all through It's A Small World she "danced" in my arms. She rocks back and forth in time to the music.
In therapy they give her lots of toys to play with, but true to her personality, Melody is more interested in all the people there. If someone walks by or talks in the hall, she is distracted from her activity.
I have stretching activities to do with Melody's legs daily as well as sitting up and rolling over exercies. She is getting pretty strong and able to roll over, however, the biggest hindrance is when her legs go straight out to the side making it impossible to roll over. She still doesn't like being on her tummy unless it is for sleeping, but she is getting better and stronger. She pushes herself backward with her arms.
She is pretty determined, so when she wants something, she'll work for it. Trying to get her to want the same things the therapist wants is sometimes a challenge, though.
Therapy is a lot of time and a lot of work trying to keep up with our home exercise routine. Sometimes it can be overwhelming, especially realizing this is a long term activity, not a short-term one. However, we take it one day at a time and are thankful for the progress she is making.
All this hard work is definitely paying off. We are working on core strength and today Melody was laying on her belly and pushed herself up to sitting with her arms! We improve her trunk strength by having her sit on a therapy ball and reach for things as she balances. She has pretty good strength already but mostly just loves to bounce on the ball.
The assessments all want to know if Melody waves bye-bye. She has just started doing that some. However, she has been giving high fives much longer. She finally has a word, "hi" and boy is it clear. She babbles a lot, but this is the first one you can identify in context. She has begun clapping her hands, too. At Disneyland last week she was clapping for the Aladdin show and all through It's A Small World she "danced" in my arms. She rocks back and forth in time to the music.
In therapy they give her lots of toys to play with, but true to her personality, Melody is more interested in all the people there. If someone walks by or talks in the hall, she is distracted from her activity.
I have stretching activities to do with Melody's legs daily as well as sitting up and rolling over exercies. She is getting pretty strong and able to roll over, however, the biggest hindrance is when her legs go straight out to the side making it impossible to roll over. She still doesn't like being on her tummy unless it is for sleeping, but she is getting better and stronger. She pushes herself backward with her arms.
She is pretty determined, so when she wants something, she'll work for it. Trying to get her to want the same things the therapist wants is sometimes a challenge, though.
Therapy is a lot of time and a lot of work trying to keep up with our home exercise routine. Sometimes it can be overwhelming, especially realizing this is a long term activity, not a short-term one. However, we take it one day at a time and are thankful for the progress she is making.
Sunday, October 10, 2010
House Update
Today we submitted our 8th offer on a house. Pray for God's will and timing in finding our new home. I must admit I am getting anxious. I had optimistically hoped we'd be moved by now. The number of items that are "in storage" that we are finding need for is growing. Our costume box is in storage, so this month we are trying to make new costumes inexpensively.
Finding the home we are looking for is not easy. Single stories are not as plentiful in our area, especially with at least 4 bedrooms and in our price range. We can drive by many of them and not even have to go in to know they won't work for us. Too hilly, or too many stairs to approach from the outside.
The house we just placed an offer on I really like. However, it is in a high tax area and doesn't have a pool. So, we are trusting God to show us His will. We do not have the money saved we would like to at this point, so we may have to just trust that God will give us the ability to put a pool in later.
Continue to pray with us that God would allow us to buy a home that will meet the needs of our family. Pray that we would not grow impatient, but that we would lower our expectations if that is what we need to do, too.
Finding the home we are looking for is not easy. Single stories are not as plentiful in our area, especially with at least 4 bedrooms and in our price range. We can drive by many of them and not even have to go in to know they won't work for us. Too hilly, or too many stairs to approach from the outside.
The house we just placed an offer on I really like. However, it is in a high tax area and doesn't have a pool. So, we are trusting God to show us His will. We do not have the money saved we would like to at this point, so we may have to just trust that God will give us the ability to put a pool in later.
Continue to pray with us that God would allow us to buy a home that will meet the needs of our family. Pray that we would not grow impatient, but that we would lower our expectations if that is what we need to do, too.
Thursday, October 7, 2010
Confessions of a Spina Bifida Mom
If my blog is silent, it sometimes means I'm struggling and don't know how to put my struggles into words.
I am accutely aware of my daughter's abilities and inabilities. However, seeing the physical therapist write it in black and white is still discouraging.
Acceptance is a continual process.
God doesn't ask me to understand, He just asks that I trust Him.
Whenever my daughter is overly fussy I worry that something is wrong with her shunt.
A Mother's love is amazing. It doesn't matter what you child is like physically or mentally, you love them desperately anyway.
Massaging my daughter's feet and realizing she probably doesn't feel me at all makes me weep sometimes.
Once I probably said with so many other people that all that matters is that I have a "healthy baby." Once I probably said, "as long as my child has two working arms, two working legs and 10 toes, that is all the matters." Now I know that those things don't really matter either.
It is extremely hard not to worry about how you'll be treated by others.
It is impossible to imagine being kind when you are mistreated.
I wouldn't trade my SB daughter for anything.
I'm learning to live one day at a time because more than that can be overwhelming.
I cry with you as you cry during your physical therapy exercises, but I'll do them anyway because I love you.
I am abundantly grateful for the multitude of people who love on my SB daughter and see her for the treasure she is.
Sunday, October 3, 2010
Stroller Straddle
I just had to take this picture as it is so typical of a stroll with Melody. You can see why she gets lots of stares while we're out and about. Most people comment on her flexiblity or how relaxed she is. Only one person asked me, "what is wrong with her?" and I was very controlled. That person still lives. :)
I often put her legs into the stroller, or straight in front of her, but she moves them right back. Ever since the hip braces, this position is evidentally more comfortable for her.
Tomorrow I will go in to hear the final report from PT and hopefully get her physical therapy sessions scheduled. Melody's AFO's (ankle/foot orthotics) are fitted, they are just waiting for authorization and then they will mold and fit them.
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