Monday we had A's second IEP. Ours is an annual IEP (reviewed throughout the year) but this was the big one with a million people crowded around a small table discussing my daughter. Last year I was very nervous for the IEP, but this year I knew what to expect, so I wasn't nearly as nervous.
Just like last year, we had tons of people present: the school psychologist, the program director, her speech therapist, her adapted PE teacher, her deaf/hard-of-hearing (DHH) specialist, the vision specialist who assessed her at my request, the resource specialist, the district nurse, A's preschool teacher, the preschool director, a school psychology intern, my husband, and myself. The only person missing was her physical therapist, who couldn't be there but sent her reports and new goals. Whew!
As I expected, all of the reports were glowing. A has met, and in most cases surpassed, almost all of the goals set for her last year. Now that she is fully walking, she has blown her PT and P.E. goals out of the water. And she has progressed very well with her language. Articulation remains hard for her, as she has the trach, paralyzed vocal chord, and scar where her cleft lip was repaired to contend with, but it's getting better. She is bright, and again didn't even qualify for a resource class: she knows her colors, shapes, capital letters, some lowercase letters, can count by rote to 11, can count objects, etc. All in all, she is doing fantastic.
The team decided to keep the same services she is already receiving (two hours a week of speech therapy, an hour of week of adapted p.e., and half an hour a week of physical therapy). However, they are adding a new service: half an hour a week of DHH therapy, which I think is learning more how to listen, which is great for her hearing loss. I am pleased.
Here is what I am not pleased with: once again, like last year, the team recommended a Special Day Class (SDC). Why? They gave me two reasons:
1) If she goes to an SDC, all of her services will come to her in one place. Right now they are splintered, meaning that I am taking her to different places every day to receive the services. But really? I don't care. This is my JOB. I am a stay-at-home mom for a reason; I truly don't mind driving her about town.
2) They say that the SDC is a very language-rich class, with teachers who work with kids with needs. However, A goes to preschool already, in an inclusion program, and I believe THAT school is also language-rich (and hey, what preschool class ISN'T language-rich, anyway!?!?) And because it's an inclusion program, the teachers there are trained to work with kids with various needs.
3) They didn't list this as a reason, but I believe that they HAVE to offer a SDC to cover their butts. They don't want me, as a parent, to come back in 5 years if A isn't doing well at school and ask why they didn't offer an SDC in preschool. They have to have a paper trail showing that it was all offered.
There is nothing wrong with an SDC. I have some friends here in real life whose kids go to an SDC, and I know I have many anonymous readers whose kids do too. However, I don't feel it's the best placement for A. She needs to be around typically-developing kids; she is one of those kids who will rise to whatever challenge is posed to her. And cognitively she is right where she should be: all of her test scores, from IQ to language, put her in the average range.
The preschool where my son D went, which was through our synagogue, wouldn't have been the right fit. It was too academic and they couldn't handle anyone with needs. An SDC isn't right either; I need A to be with kids at or above her level, rather than at or below. We have found the perfect school; the inclusion program means that the majority of the students are typically developing, but they take a few kids with needs of various types, and the teachers are trained in how to adapt to the needs. A is getting the best of both worlds.
So, we declined (once again) the offer of an SDC. She will continue at her current preschool, but this time 3 days a week instead of 2, and will receive all of the above-named school services. We will also continue to get PT and speech therapy privately at Children's Hospital, and do horse therapy as we've been doing for the past 2 years. And next year we'll have more free time, so we can do a ballet class, or soccer, or gymnastics.
All in all, it was a great IEP. I am so proud of A and it was great to hear so many wonderful things about her! I hope we are making the right choice for her, given my fears last month, but I truly think we are. After the IEP, her therapists all came up to me and told me they agreed with me. And we can always reassess if I think that A is falling behind. But knowing my daughter, she won't be!
May 27, 2010
May 19, 2010
O-U-T spells OUT!!!!!!!!!!!
Today I got the news I've been waiting for: a surgery date for my daughter, A. On July 15, she will go into the O.R. where she will be seen by 3 of her surgeons. Her ENT will do a scope down her tracheostomy to see if she is a "candidate for decannulation" (his words); her GI doctor will do an endoscopy down her esophagus to look for any signs of reflux; and another surgeon will remove her g-tube (feeding tube). She will spend one night in the hospital, to watch for infection after the removal of the tube and the subsequent stitches.
This will be our third summer in a row where the ENT and GI doctors have scoped her in the O.R. Each year I get my hopes up that the ENT will decannulate her, and every year he says that she is not ready yet, that we will look again next year. I still have hopes that this summer will be different, that he will think she's ready to begin the process of taking the breathing tube out, but after our appointment a few weeks ago I really don't have HIGH hopes.
So, I am going to focus on the amazing item on the agenda---she is getting her feeding tube out! Hallelujah! I never thought this day would come!
A has been on a feeding tube since she was 2 days old. After she was born (and before we knew anything was "wrong" with her besides the obvious cleft lip) she lost almost a pound (15 ounces) in the first 2 days. I was desperately trying to nurse her, but she just couldn't nurse due to her vascular ring, which was a blood vessel coming from her heart and wrapped around her esophagus and trachea, making it hard for her to both eat and breathe (and, of course, eventually leading to her getting a trachostomy and feeding tube inserted). She had an NG tube for the first 2 months (which was a feeding tube through her nose) and when she was 2 months old we opted for the g-tube to be inserted in her stomach (otherwise known as a mic-key button).
A was fed exclusively through the feeding tube for the first year. I was determined that, like my son D, she would get my breastmilk for a year, and by golly I DID pump my milk for an entire 12 months for her. I produced so much milk, in fact, that I not only did I feed my daughter for a year but also donated something like 51 liters of milk to a milk bank. When she was almost 6 months old, she began to eat a bit of baby food, with the help of our wonderful occupational therapist. I remember our OT putting some baby food on a washcloth, and A began to suck on the cloth. It was amazing...for the first time my little girl was putting something in her mouth! Little by little, she would eat baby food....eventually she branched out and ate solid food (her initial favorites were bread and blue cheese!)
Of course, it was a long time before things progressed. Soon she began to eat more and more food, but wasn't drinking. We had to continue to use the feeding tube to keep her hydrated. We'd give her bolluses of water throughout the day, and overnight we'd use the feeding pump to slowly dose about 500 cc of Pediasure. I knew if we could only get her to drink, we'd get her off the tube. But she wouldn't drink. I remember her once eating a peanut butter sandwich on a hot day in the summer, and offering her some water; she wouldn't take it. Anyone else would have---the combination of the heat and a sticky sandwich would make most anyone grab a drink! Not my daughter.
Finally, last summer, with the blessing of our OT and nutritionist, we began to withhold water from her. I realized that she was never thirsty....we were constantly giving her water bolluses throughout the day, and therefore she never knew thirst! So we tried different times where I would not give her water when I usually would, hoping to get her thirsty. During these times I would constantly offer her drinks (water, milk, juice, ANYTHING!), so withholding really isn't the right word; I guess the right word would be offering her an alternative. Of course, at the first sign of dehydration I would go ahead and give her water through her tube. We experimented like this several times, each time lasting only a day or two.
Then, on July 18, 2009, we gave her one last water bollus and decided to experiment once again with withholding liquid through the tube and offering it orally instead. This time it worked! Ever since that day, we have not used her t-tube for anything---not for water, Pediasure, medicine, etc. It has been literally unused. For some reason, that day she was ready...and has drank orally ever since. She needs to use a sippy cup with a straw, although we are now working on an open cup and have been having success with the doidy cup. She has been maintaining her weight, and in fact has been gaining weight at the rate she was when she was ON the feeding tube--only this time she is doing it all by herself! And she has not been dehydrated at all, even for a day.
I never though this day would come, but in less than 2 months, A will have the feeding tube removed. It will be 4 years (minus 3 weeks) since she had gotten the g-tube placed, and almost a year to the day since we used the g-tube last. Even if she doesn't get her trach out, this is such a huge accomplishment. A huge reason to celebrate.
This will be our third summer in a row where the ENT and GI doctors have scoped her in the O.R. Each year I get my hopes up that the ENT will decannulate her, and every year he says that she is not ready yet, that we will look again next year. I still have hopes that this summer will be different, that he will think she's ready to begin the process of taking the breathing tube out, but after our appointment a few weeks ago I really don't have HIGH hopes.
So, I am going to focus on the amazing item on the agenda---she is getting her feeding tube out! Hallelujah! I never thought this day would come!
A has been on a feeding tube since she was 2 days old. After she was born (and before we knew anything was "wrong" with her besides the obvious cleft lip) she lost almost a pound (15 ounces) in the first 2 days. I was desperately trying to nurse her, but she just couldn't nurse due to her vascular ring, which was a blood vessel coming from her heart and wrapped around her esophagus and trachea, making it hard for her to both eat and breathe (and, of course, eventually leading to her getting a trachostomy and feeding tube inserted). She had an NG tube for the first 2 months (which was a feeding tube through her nose) and when she was 2 months old we opted for the g-tube to be inserted in her stomach (otherwise known as a mic-key button).
A was fed exclusively through the feeding tube for the first year. I was determined that, like my son D, she would get my breastmilk for a year, and by golly I DID pump my milk for an entire 12 months for her. I produced so much milk, in fact, that I not only did I feed my daughter for a year but also donated something like 51 liters of milk to a milk bank. When she was almost 6 months old, she began to eat a bit of baby food, with the help of our wonderful occupational therapist. I remember our OT putting some baby food on a washcloth, and A began to suck on the cloth. It was amazing...for the first time my little girl was putting something in her mouth! Little by little, she would eat baby food....eventually she branched out and ate solid food (her initial favorites were bread and blue cheese!)
Of course, it was a long time before things progressed. Soon she began to eat more and more food, but wasn't drinking. We had to continue to use the feeding tube to keep her hydrated. We'd give her bolluses of water throughout the day, and overnight we'd use the feeding pump to slowly dose about 500 cc of Pediasure. I knew if we could only get her to drink, we'd get her off the tube. But she wouldn't drink. I remember her once eating a peanut butter sandwich on a hot day in the summer, and offering her some water; she wouldn't take it. Anyone else would have---the combination of the heat and a sticky sandwich would make most anyone grab a drink! Not my daughter.
Finally, last summer, with the blessing of our OT and nutritionist, we began to withhold water from her. I realized that she was never thirsty....we were constantly giving her water bolluses throughout the day, and therefore she never knew thirst! So we tried different times where I would not give her water when I usually would, hoping to get her thirsty. During these times I would constantly offer her drinks (water, milk, juice, ANYTHING!), so withholding really isn't the right word; I guess the right word would be offering her an alternative. Of course, at the first sign of dehydration I would go ahead and give her water through her tube. We experimented like this several times, each time lasting only a day or two.
Then, on July 18, 2009, we gave her one last water bollus and decided to experiment once again with withholding liquid through the tube and offering it orally instead. This time it worked! Ever since that day, we have not used her t-tube for anything---not for water, Pediasure, medicine, etc. It has been literally unused. For some reason, that day she was ready...and has drank orally ever since. She needs to use a sippy cup with a straw, although we are now working on an open cup and have been having success with the doidy cup. She has been maintaining her weight, and in fact has been gaining weight at the rate she was when she was ON the feeding tube--only this time she is doing it all by herself! And she has not been dehydrated at all, even for a day.
I never though this day would come, but in less than 2 months, A will have the feeding tube removed. It will be 4 years (minus 3 weeks) since she had gotten the g-tube placed, and almost a year to the day since we used the g-tube last. Even if she doesn't get her trach out, this is such a huge accomplishment. A huge reason to celebrate.
May 18, 2010
Miss Motivated
We had the coolest physical therapy session (PT) today! (We actually have two PTs....one is paid for by our insurance at Children's Hospital, and the other is through our school district.) Today was our weekly session with our school district PT. Since we have our annual IEP next Monday, she wanted to re-assess A to see which goals she has met and set some new ones.
First, she read off her notes from her initial assessment with A, which was done in mid-October...only about 6 months ago. She had jotted down that at that time, the longest A had walked independently was 10 steps; that she cruised all the time holding onto furniture; that she used her gait trainer (walker) to get around her classroom; and that she could not stand at all independently. In only 6 months, A has blown that assessment to bits. Today she walks 100% of the time independently, has walked at least 75 yards that I know of, can stand perfectly still in one spot for a while before losing her balance, and her gait trainer is collecting dust in the garage, ready to be donated to someone who needs it. Heck, last month she did her first race, a 50 yard Toddler Trot!
The PT kept expressing that she couldn't be more amazed at A's rapid progress. She did not do an official inventory (she had done the Peabody in October, but you can only do it once a year to be valid so she couldn't not repeat it today). She said that A had scored in the less that 1% bracket in mobility for her age. Of course, we don't know her percentile today, since she did not do the test, but without a doubt A is catching up. She said that not only is A gaining ground, but she cannot believe how QUICKLY she is doing so!
The best part of the session, however, was the PT talking about A's personality. She said that A is very motivated, and that motivation is something that cannot be taught. You either have it or you don't. According to her, it is very difficult, as a therapist, to work with a child who is not motivated; it's like pulling teeth to get anything done. But A IS motivated. She is very social, and wants to be like her older brother and her peers at school. She works hard every session, and this has paid off in spades.
Above all else, hearing how motivated my daughter is put a huge smile on my face. With motivation and hard work, there is NOTHING A can't accomplish, whether it is with her gross motor, language, or cognitive skills. I am so proud!
First, she read off her notes from her initial assessment with A, which was done in mid-October...only about 6 months ago. She had jotted down that at that time, the longest A had walked independently was 10 steps; that she cruised all the time holding onto furniture; that she used her gait trainer (walker) to get around her classroom; and that she could not stand at all independently. In only 6 months, A has blown that assessment to bits. Today she walks 100% of the time independently, has walked at least 75 yards that I know of, can stand perfectly still in one spot for a while before losing her balance, and her gait trainer is collecting dust in the garage, ready to be donated to someone who needs it. Heck, last month she did her first race, a 50 yard Toddler Trot!
The PT kept expressing that she couldn't be more amazed at A's rapid progress. She did not do an official inventory (she had done the Peabody in October, but you can only do it once a year to be valid so she couldn't not repeat it today). She said that A had scored in the less that 1% bracket in mobility for her age. Of course, we don't know her percentile today, since she did not do the test, but without a doubt A is catching up. She said that not only is A gaining ground, but she cannot believe how QUICKLY she is doing so!
The best part of the session, however, was the PT talking about A's personality. She said that A is very motivated, and that motivation is something that cannot be taught. You either have it or you don't. According to her, it is very difficult, as a therapist, to work with a child who is not motivated; it's like pulling teeth to get anything done. But A IS motivated. She is very social, and wants to be like her older brother and her peers at school. She works hard every session, and this has paid off in spades.
Above all else, hearing how motivated my daughter is put a huge smile on my face. With motivation and hard work, there is NOTHING A can't accomplish, whether it is with her gross motor, language, or cognitive skills. I am so proud!
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