Nothing could be more perfect than me and my boy on a beautiful, sunny day. But, life isn't always smiles and sunshine. Life is about the climb, that fight to makes every day the perfect day. I have found that my day can always be perfect if I don't let the circumstances define the situation. It's all about running from the lightening and learn to dance with the beat of thunder, holding my head high and singing in the rain. And, if my spirit remains strong enough, I can hang on for the shimmer of sunshine when the rain is gone.
And, so, I press ahead with each perfectly imperfect day...
Brandt has had a bit of a rough spurt lately. He got a bloody nose on Tuesday when he was trying to dance to "Ring Around the Rosie." That was followed by tripping into the coffee table and a crash on the floor on Wednesday. Poor kid. His falls, paired with his anemia, Always seem to leave him with some pretty yucky bumps and bruises.
Thursday was the biggest fall. When I got to the sitter, the two of us were talking while Brandt was playing on the patio. Suddenly, Brandt ran to me crying. Poor boy missed his mommy, or so I thought. I comforted Brandt and we left soon after.
But, when we got home and put Brandt in the tub, we quickly knew something was wrong. He was screaming bloody murder. He would not stop screaming. Right away, Darrin found that Brandt had a skinned hand and knee. I went in for a closer look, and discovered that Brant's hand was blistered-- it was badly burned.
After talking to the sitter and putting together all of the pieces, we think Brandt was trying to pet Eugene, the tortoise. Unfortunately, his balance isn't so good and he probably fell into the heat lamp--thus, he skinned his knee and burned his hand. And, this most likely happened while the sitter and I were chatting, when Brandt came running to me crying.
Immediately, we took him to the doctor, and he was treated for second degree burns. The doctor told us that it was very fortunate that the inside of his hand wasn't burned because we would have automatically been referred to a plastic surgeon, if that was the case. Apparently, the palm won't heal because the skin contracts too much as it is trying to heal. So, luckily that wasn't the case. They medicated and wrapped him, and they sent us on our way.
Because we were told he needed to keep his hand clean and wrapped, I stayed home with him Friday. But, as I said--got to run away from the thunder and enjoy the calm of the storm, so I bought Brandt 'Angry Birds' athletic wrap to keep his hand covered and looking like a cool dude! Our three day weekend was filled with fun. Brandt got a new 3T/4T wardrobe, along with beach toys, a bubble blower, and a backyard kiddie pool. We went to the park, and we went on bike rides. We went out for lunch and had a picnic outside. We weren't going to let a little burn hold us back.
But, perhaps the biggest part our weekend was starting to potty-train Brandt. I had bought Brandt a "Cheer for Me" potty a while back, but he hadn't showed much interest in it yet. At the recommendation of the sitter, I bought Brandt an Elmo potty seat for the big boy potty. What a success! He was so excited and laughs every times he tinkles or goes poo-poo. He is so proud of himself, and I couldn't be more proud of him. We had a very successful weekend with very few accidents. I kept telling, "oh, no, you can't go pee-pee on Thomas (Thomas the Train undies), and he thought that was soooo funny!
And though Brandt is only 22 months, I read an article about a school for down syndrome children that potty-train all their students at 18months. Their secret--they make the kids go every 15minutes. I followed suit by putting Brandt on a potty timer. We started at 10 minute intervals and worked our way up to 20 minute intervals. He did so wonderfully--he even went poo-poo (like 6 times) on the potty. I hate to jinx it, but this is way easier than I thought it would be, though my back is killing me from constantly putting him on and taking him off the potty. Hopefully, the sitter can continue to work with him this week, and then I can really buckle down with him next week during spring break. With consistency, he'll be completely potty-trained before I know it!
So, we definitely didn't let his bumps, bruises, or burns get us down--we made the most out of every moment together! Love this kid!
Monday, March 18, 2013
Tuesday, March 12, 2013
Safety Concerns Save the Day
It's been a week since Brandt's evaluation with Early Steps, but I haven't had a chance to blog until now..... What can I say, life is hectic and complicated.
In all honesty, the evaluation day was an all-in-all draining day. My father-in-law was having complications with his medical status, and we had just left a police funeral, so I went into the evaluation with less fire and fight than I would typically have.
I still don't much have the energy to go into extensive details of it all, but I will say that Brandt lost some services.
The evaluation was a joke. The family service coordinator and speech therapist came in with a kit to evaluate Brandt, but the kit was new, and they forgot the manuals. So, they were sort of "winging it" based off of what they could remember. It was irritating listening to the two of them guess how each of the tests should be performed. It was even more frustrating for me that their invalid test was determining the future of my son's services.
That being said, Brandt's speech services were cut down from once weekly to now just twice a month--and I had to fight to get that. They wanted to remove speech altogether and reassign him back with an Infant and toddler developmental specialist. I was mad because it seems like we took two steps forward only to take two steps back. It was such a huge fight to get speech, and now they want to take it away. And, the kicker is that they still agree that he has a delay in communication, so their logic in removing that service is pretty darn skewed. They told me in the past that they tend to only fund one service as a primary service provider. So, in reality, it all comes down to state funding and budget cuts.
Luckily, Brandt's physical therapy was not even in question or a topic of discussion. It was just a matter-of-fact. When completing the family service plan, the physical therapist said this service would continue due to many safety concerns. We need more consistency in his walking and a greater sense of balance. Thankfully, his safety concerns saved the day and helped him to continue services with that.
Still, there is a scary reality in that fact--safety concerns. Some days, Brandt is such a mess--tripping and falling every other step. This week has been a rough week for him with that. He has a bruise on one side of his head and a knot on the other. He has a gash under one eye, and he got his first bloody nose this morning. The fact of the matter is that I often fear he is going to have a serious fall that is going to leave him in bad shape. In my mind, it is a very valid and serious concern that I often contemplate. Brandt has no fears and knows no boundaries, and I worry about that--especially with him taking dives off the couch and tripping over his own feet. He is just so dangerous. Definitely, safety concerns.
Today's bloody nose left me in a funk. I wanted so badly to take Brandt home and just hold him, but reality demanded my presence. I wanted a friend to just listen to my frustration, but instead I got a history lesson on nursery rhymes. It I hard being a parent when no one hears or understands my concerns or feelings. Somehow, I just have to find a way to be emotionless and just accept life as it comes, but I so desperately wish for just an ounce more of understanding.
One day, some day, some how...
In all honesty, the evaluation day was an all-in-all draining day. My father-in-law was having complications with his medical status, and we had just left a police funeral, so I went into the evaluation with less fire and fight than I would typically have.
I still don't much have the energy to go into extensive details of it all, but I will say that Brandt lost some services.
The evaluation was a joke. The family service coordinator and speech therapist came in with a kit to evaluate Brandt, but the kit was new, and they forgot the manuals. So, they were sort of "winging it" based off of what they could remember. It was irritating listening to the two of them guess how each of the tests should be performed. It was even more frustrating for me that their invalid test was determining the future of my son's services.
That being said, Brandt's speech services were cut down from once weekly to now just twice a month--and I had to fight to get that. They wanted to remove speech altogether and reassign him back with an Infant and toddler developmental specialist. I was mad because it seems like we took two steps forward only to take two steps back. It was such a huge fight to get speech, and now they want to take it away. And, the kicker is that they still agree that he has a delay in communication, so their logic in removing that service is pretty darn skewed. They told me in the past that they tend to only fund one service as a primary service provider. So, in reality, it all comes down to state funding and budget cuts.
Luckily, Brandt's physical therapy was not even in question or a topic of discussion. It was just a matter-of-fact. When completing the family service plan, the physical therapist said this service would continue due to many safety concerns. We need more consistency in his walking and a greater sense of balance. Thankfully, his safety concerns saved the day and helped him to continue services with that.
Still, there is a scary reality in that fact--safety concerns. Some days, Brandt is such a mess--tripping and falling every other step. This week has been a rough week for him with that. He has a bruise on one side of his head and a knot on the other. He has a gash under one eye, and he got his first bloody nose this morning. The fact of the matter is that I often fear he is going to have a serious fall that is going to leave him in bad shape. In my mind, it is a very valid and serious concern that I often contemplate. Brandt has no fears and knows no boundaries, and I worry about that--especially with him taking dives off the couch and tripping over his own feet. He is just so dangerous. Definitely, safety concerns.
Today's bloody nose left me in a funk. I wanted so badly to take Brandt home and just hold him, but reality demanded my presence. I wanted a friend to just listen to my frustration, but instead I got a history lesson on nursery rhymes. It I hard being a parent when no one hears or understands my concerns or feelings. Somehow, I just have to find a way to be emotionless and just accept life as it comes, but I so desperately wish for just an ounce more of understanding.
One day, some day, some how...
Sunday, March 3, 2013
Finding the Shortfalls
Brandt's annual evaluation with Early Steps is tomorrow, and I am so anxious and nervous. I don't really know what to expect, as I am not really sure what the therapists will say and how they will chart his progress.
He has definitely made lots of gains--I just hope that it is not so much so that they exit him out of the program. In my logical brain, I know that Brandt is still not where he is supposed to be, yet I feel like I need to prepare a long list of his delays to fight my case. In my logical brain, I am sure the therapists see all of these same delays, and yet I can't help but worry. I had to fight so hard to get Brandt services; I don't want anything to jeopardize that.
And, now, I feel compelled to spell it out to all of you. So, I pulled up the 22month old Ages and Stages Questionnaire, and here goes:
Communication:
Does not identify objects when pointed to and asked, "what is this."
Does not identify seven body parts (nose, eyes, ears, mouth, etc).
Does not correctly use "me, mine, I, and you."
does not say 2-3 words in sequence that represent different ideas.
Gross motor:
Des not kick a ball forward.
Does not run well without bumping into things or falling.
Does not walk up one or two steps while holding onto railing by himself.
Does not jump with both feet off the floor.
Fine motor:
Does not eat with a spoon so the food does not spill.
Does not stack 6 blocks (or two for that matter).
Does not flip switches off and on.
Does not string small items, such as beads on a shoelace.
Problem-Solving:
Does not imitate lining up blocks.
Does not pretend objects are something else.
Does not imitate drawing a straight line.
Does not turn bottle upside down to empty after a Cheerio is put inside.
Personal-Social:
Does not eat with a fork.
Does not drink from a cup or glass with little spilling.
Does not pretend to take care of a doll or stuff animal.
Does not steer push toy around objects.
So, well, yeah, that pretty much sucks. I probably shouldn't have just put myself through that. That was painful for me and irritating for Brandt. I'm noticing that there were four shortfalls in each section, but it is fair to note that there were also two things in each section that he was able to do. I wonder if I pulled up a 20 month questionnaire, how would he score? How far would I have to go back to catch his delay? Unofficially, I believe that he is about 6 months delayed across the board. But, maybe tomorrow will give me a better idea on where he is at and what more I can do for him.
Fingers crossed that tomorrow is not another endless battle.
He has definitely made lots of gains--I just hope that it is not so much so that they exit him out of the program. In my logical brain, I know that Brandt is still not where he is supposed to be, yet I feel like I need to prepare a long list of his delays to fight my case. In my logical brain, I am sure the therapists see all of these same delays, and yet I can't help but worry. I had to fight so hard to get Brandt services; I don't want anything to jeopardize that.
And, now, I feel compelled to spell it out to all of you. So, I pulled up the 22month old Ages and Stages Questionnaire, and here goes:
Communication:
Does not identify objects when pointed to and asked, "what is this."
Does not identify seven body parts (nose, eyes, ears, mouth, etc).
Does not correctly use "me, mine, I, and you."
does not say 2-3 words in sequence that represent different ideas.
Gross motor:
Des not kick a ball forward.
Does not run well without bumping into things or falling.
Does not walk up one or two steps while holding onto railing by himself.
Does not jump with both feet off the floor.
Fine motor:
Does not eat with a spoon so the food does not spill.
Does not stack 6 blocks (or two for that matter).
Does not flip switches off and on.
Does not string small items, such as beads on a shoelace.
Problem-Solving:
Does not imitate lining up blocks.
Does not pretend objects are something else.
Does not imitate drawing a straight line.
Does not turn bottle upside down to empty after a Cheerio is put inside.
Personal-Social:
Does not eat with a fork.
Does not drink from a cup or glass with little spilling.
Does not pretend to take care of a doll or stuff animal.
Does not steer push toy around objects.
So, well, yeah, that pretty much sucks. I probably shouldn't have just put myself through that. That was painful for me and irritating for Brandt. I'm noticing that there were four shortfalls in each section, but it is fair to note that there were also two things in each section that he was able to do. I wonder if I pulled up a 20 month questionnaire, how would he score? How far would I have to go back to catch his delay? Unofficially, I believe that he is about 6 months delayed across the board. But, maybe tomorrow will give me a better idea on where he is at and what more I can do for him.
Fingers crossed that tomorrow is not another endless battle.
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