It's amazing how as you get older the trials you, your family and your friends experience seem to grow as well.
Alden is the daughter of our Sunday School Director in Austin's best friend. She has been struggling with leukemia for years and about a month ago finally had to have a bone marrow transplant. I always knew that it was the treatment of last resort for a reason, but its so hard to see someone so young and precious suffer through it.
In the last week or so she has started to have major GVH (graft vs. host) issues and the outlook is steadily darkening. She and her family all know the Lord and are looking to him for guidance, but we're only human and that is their baby suffering. If it was Sam, heaven help me, I'd be a basket case.
She has a CaringBridge page if you want to know more about her fight: http://www.caringbridge.org/visit/aldenmalachowski
But please, when you can, pray for this sweet little girl.
Wednesday, November 11, 2009
Wednesday, November 4, 2009
Therapy
Since I started writing the blog I've tried to keep it fairly light and cheery. I'm not really one to put my/our problems out there for the world to see, though I admit to a mopey Facebook status update or two. But...
We took Sam to see his pediatrician a few weeks ago because we had noticed his speech, or lack thereof, regressing. He used to babble, which he doesn't hardly anymore; he's 20 months old and only has 3 or so words we've heard him say. A lot of the time if you ask him to say anything he'll growl or make some other kind of unintelligible noise. If you ask him a yes or no question he'll respond by shaking his head (no) or opening his mouth wide (yes). He's picked up a few bits of sign language which has helped more that I ever thought it could, at least we can understand his most basic needs that way.
Our insurance, like most, doesn't cover speech therapy and Sam is too young for a program based out of H.I.S.D. Fortunately, Texas has a program called Early Childhood Initiative (ECI) that is either free or a VERY low-cost therapy program (not just for speech) that treats children ages 0-3. They come to your home, which is great, and they place an emphasis on teaching the parents how to work with their child so that treatment isn't just when the therapist comes but can be worked into everyday activities.
We've already completed step one of two for his initial evaluation, first they do a vision/hearing/nutrition/physical before a second visit with the speech therapist for a full-on evaluation. He "failed" the hearing portion of the tests because the state automatically fails children if they don't meet a certain number of words per age. They also suggested that we have a full hearing evaluation to make sure that there is nothing wrong. Our pedi had almost ordered one when we saw him but didn't since he can tell that Sam obviously can hear us.
Our Doc applauded us for catching it before his 2 yr. checkup since the earlier it's caught the less time it takes to treat it. He also said that he isn't worried about an underlying cause, think Autism or seizures, and that it's likely just a developmental delay. He said Sam's obviously very intelligent, he understands complex commands and is ahead on all of his other milestones, we just need to get that boy the gift of gab!
The downside is that it could take over a year to treat and progress isn't rapid at all. The biggest concern is getting it fixed before his lack of ability to communicate, especially with other kids, causes social or behavioral problems on top of it.
Right now though, all this Mama wants to hear is her baby call her "Mama", something he's never been able to do. :( When I come home from school he runs to the door saying "Dada! Dada!" I love that he's excited when I'm home, but I want to burst into tears everytime I hear "Dada" when he's obviously talking to me.
The in-depth speech evaluation is December 10th and I'm curious to see how that goes. Everyone we've met that works on the program has been very kind and Sam has taken to them well. His first eval took longer than expected because he wanted Miss Rashonda to play ball with him.
In other news he has really started to love playing with balls, cars and trains. He's started saying "Too-too!" when he see's a train or he's playing with one. Target had a Thomas the Train Engine DVD on super-sale the other day so I got it for him. Oh my goodness does that boy love it! He has a couple of Thomas tub toys and he lined them all up in front of the TV while he watched it and said "Too-Too" over and over. He gets very upset when it is time to turn it off.
Sam has also started to babble more frequently and say something that sounds like "stinky", but it comes out more like "oon-ky". It would be my/our luck for him to verbally take off right after we sound the alarm for a problem. Oh well, I'll take it!
Thanks to all of you who have been asking me how he's doing and how the appointments have been. It is really encouraging to know that you care and are praying. We love you ALL!
Tomorrow we're going to Liberty Hill for Thanksgiving and will be there for several days. Unfortunately I will be holed up studying for finals, writing my oral presentation for International Relations and finishing my Foreign Policy term paper on the Czech Republic. Fun! At least Sam will have lots of family to love on him and play with him all weekend.
Happy Thanksgiving everyone!
PS - Alden, after things seemed to be getting even bleaker, has rebounded a bit and was allowed to leave the hospital for a couple of hours yesterday. What a ride this has been and continues to be for their family!
We took Sam to see his pediatrician a few weeks ago because we had noticed his speech, or lack thereof, regressing. He used to babble, which he doesn't hardly anymore; he's 20 months old and only has 3 or so words we've heard him say. A lot of the time if you ask him to say anything he'll growl or make some other kind of unintelligible noise. If you ask him a yes or no question he'll respond by shaking his head (no) or opening his mouth wide (yes). He's picked up a few bits of sign language which has helped more that I ever thought it could, at least we can understand his most basic needs that way.
Our insurance, like most, doesn't cover speech therapy and Sam is too young for a program based out of H.I.S.D. Fortunately, Texas has a program called Early Childhood Initiative (ECI) that is either free or a VERY low-cost therapy program (not just for speech) that treats children ages 0-3. They come to your home, which is great, and they place an emphasis on teaching the parents how to work with their child so that treatment isn't just when the therapist comes but can be worked into everyday activities.
We've already completed step one of two for his initial evaluation, first they do a vision/hearing/nutrition/physical before a second visit with the speech therapist for a full-on evaluation. He "failed" the hearing portion of the tests because the state automatically fails children if they don't meet a certain number of words per age. They also suggested that we have a full hearing evaluation to make sure that there is nothing wrong. Our pedi had almost ordered one when we saw him but didn't since he can tell that Sam obviously can hear us.
Our Doc applauded us for catching it before his 2 yr. checkup since the earlier it's caught the less time it takes to treat it. He also said that he isn't worried about an underlying cause, think Autism or seizures, and that it's likely just a developmental delay. He said Sam's obviously very intelligent, he understands complex commands and is ahead on all of his other milestones, we just need to get that boy the gift of gab!
The downside is that it could take over a year to treat and progress isn't rapid at all. The biggest concern is getting it fixed before his lack of ability to communicate, especially with other kids, causes social or behavioral problems on top of it.
Right now though, all this Mama wants to hear is her baby call her "Mama", something he's never been able to do. :( When I come home from school he runs to the door saying "Dada! Dada!" I love that he's excited when I'm home, but I want to burst into tears everytime I hear "Dada" when he's obviously talking to me.
The in-depth speech evaluation is December 10th and I'm curious to see how that goes. Everyone we've met that works on the program has been very kind and Sam has taken to them well. His first eval took longer than expected because he wanted Miss Rashonda to play ball with him.
In other news he has really started to love playing with balls, cars and trains. He's started saying "Too-too!" when he see's a train or he's playing with one. Target had a Thomas the Train Engine DVD on super-sale the other day so I got it for him. Oh my goodness does that boy love it! He has a couple of Thomas tub toys and he lined them all up in front of the TV while he watched it and said "Too-Too" over and over. He gets very upset when it is time to turn it off.
Sam has also started to babble more frequently and say something that sounds like "stinky", but it comes out more like "oon-ky". It would be my/our luck for him to verbally take off right after we sound the alarm for a problem. Oh well, I'll take it!
Thanks to all of you who have been asking me how he's doing and how the appointments have been. It is really encouraging to know that you care and are praying. We love you ALL!
Tomorrow we're going to Liberty Hill for Thanksgiving and will be there for several days. Unfortunately I will be holed up studying for finals, writing my oral presentation for International Relations and finishing my Foreign Policy term paper on the Czech Republic. Fun! At least Sam will have lots of family to love on him and play with him all weekend.
Happy Thanksgiving everyone!
PS - Alden, after things seemed to be getting even bleaker, has rebounded a bit and was allowed to leave the hospital for a couple of hours yesterday. What a ride this has been and continues to be for their family!
Monday, November 2, 2009
Halloween
Sam had SO much fun on Halloween. In an effort to coordinate costumes with our dog Caspian, and because he likes them, Sam was a duck. Caspian has a chicken suit, since we couldn't find a chicken costume we went for at least both of them being yellow. Getting them together dressed up and still for a picture however proved to be impossible, though maybe cousin Ajeng managed to get it.
First we went to the Fall Festival at CEPC, the church I go to MOPS at. There were so many cute kiddoes, I just love seeing them dressed up and having fun. Sam woke up kinda late from his nap so he got there just in time to go up and down the hallway getting candy from the adults. How sad ;)-
After that we headed to Uncle Eric's house to spend the evening with him and cousin Ajeng. He grilled some chicken, I brought some sweets and we just nibbled at stuff throughout the night. Once it was dark we took Sam trick or treating. He used the bag I decorated for him at the festival (I think having him decorate his own bag every year might be a tradition I'll start) and he wouldn't let anyone else carry it, let alone touch it for any reason. He got the hang of it pretty fast and everyone thought he was just too cute!
Dr. Mom, Daddy the Caveman-Clown-Wizard, and Sam the Duck
Trick or Treat! I loved the poofy booty on his costume; it waddled when he walked. It was just precious!
This is fun! I want to keep going!...
But my bag is getting pretty full and heavy. I think I'll just sit down and look at my loot.
Done for the night.
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