This week - this whole month - is going by SO fast.
Our Medicaid (Katie Beckett Deeming Waiver) annual renewal application was due today, so I was buried in paperwork all week trying to get it done at superhuman speed. Our application surpassed 100 pages this year. Yikes. Gwyneth has had a very busy year medically, and there is much more ahead in the coming few months...
Today I left Gwyneth at the therapy center while I drove over to the pediatrician's office to pick up the Medicaid renewal paperwork that I had left there for the Doctor to sign. Then it had to be copied and sent off to the Dept of Family and Child Services. It was a whirlwind morning. When I rushed back into the Therapy center near the end of Gwyn's morning, I got the summary of the day from all 3 therapists back to back. She had a great day with all of them: working on trying to blow a pinwheel, trying a new Therapeutic Listening chip in her headphones, and being very energized with the PT activities. The discs/chips in her TL headphones are changed every 2 weeks and the OT determines which chips she will do next to try to challenge her in different areas. Right now the focus is on her vestibular sense and spatial awareness. It is a very good sign that she was so energetic during her PT session (which follows OT) and she was moving around in new ways. They said she was moving her body and arms on the swing which she's never done; she's usually very stiff.
I am so relieved that the Medicaid renewal paperwork is done. This is my third year with the Waiver, and I dread it every time, but it is worth it to get the financial aid to pay for Gwyneth's therapies and extra medical costs.
Coming up: Gwyn is scheduled to have her tonsils & adenoids removed, but there are several doctors visits that need to happen first (mainly: she has to be cleared by the Neurologist because of the AAI possibility). We finally had an appointment at the Emory Down Syndrome Clinic in Atlanta which was so helpful. More details on the Emory Clinic visit, the Neurology appointment, and the upcoming surgery in another post...
Friday, April 27, 2012
Saturday, March 31, 2012
Friday at the Farm: iPad Girl
So about a week ago, Reid surprised me with a used iPad2 that he bought from someone on Craig's List. I have always resisted Apple products, so this is my first i-anything, but I have to admit that I'm really loving it. And I'm proud of my techie husband for buying a used one, since I really don't care about having the latest and greatest thing.
As I was waiting at the Farm during Gwyneth's therapy appointments, I worked (played) on the iPad. A mom who came in with her 6-year-old (who has Autism) began talking to me about all the great apps for kids. I downloaded a few free apps and when Gwyn came out of PT, I showed her the apps.
Our girl is going to be an iPad girl! She's been enthralled with the "Magic Piano" app and I love that the first song you can "play" by tapping the screen is her favorite "Twinkle Twinkle Little Star." She has also been tickled by the "Seek & Find Picture Book" app - a game where you touch the screen to activate different scenes around a Zoo. The monkeys make her giggle every time. I want to buy the rest of the app that has Farm and Forest options for the game. Both of these games will help her improve her fine motor skills, hand-eye coordination, and problem-solving skills.
What apps do you know about for kids, especially kids with special needs?
Monday, March 26, 2012
Friday at the Farm: Therapeutic Listening
Yes, I'm half a week behind with the Friday post! Oh, well. :) My excuse is that Gwyn and I both have strep again and she has an ear infection... My mother-in-law said it best to me last night that her tonsils can't come out soon enough!
Anyway, last Friday's therapy update is that I ordered and received the Sennheiser headphones so Gwyneth was able to start the Therapeutic Listening program. Her Occupational Therapist Kacie got the headphones and tiny disc player all set up for us. Here are the basics of our new OT endeavor:
Anyway, last Friday's therapy update is that I ordered and received the Sennheiser headphones so Gwyneth was able to start the Therapeutic Listening program. Her Occupational Therapist Kacie got the headphones and tiny disc player all set up for us. Here are the basics of our new OT endeavor:
- the specially designed headphones are "open-air" so Gwyn hears the disc, but can also hear sounds/talking around her
- the discs play music that has been altered by computers in order to help the brain and nervous system "respond" with the goal of improving skills in many areas (from posture to attention to communication and more) More specific details can be read here: Vital Links
- she cannot have any electronic toys, TV, radio, etc going on at the same time because it would interfere with what she hears on the disc
- she listens to the disc for 30 min at a time, twice per day, preferably while doing an OT activity and not within 3 hours of bedtime (also, not while riding in the car)
- some of the activities we've done so far are self-feeding during breakfast, wooden puzzles, coloring with crayons, putting foam shapes onto wooden pegs, etc.
- it will be hard work for her since it is affecting her nervous system and trying to improve many things throughout her body - it could even regulate her digestion
- we will exchange our disc at the Farm every two weeks for the next level disc (the discs getting progressively more challenging)
I've been impressed with her tolerance of it so far, although she does a lot better if she's getting one-on-one attention from me at the time. I tried wearing my large (non-earbud) headphones at the same time once and she was happy to see them on me. She didn't try to pull her headphones off every few minutes like other times. So I will wear my headphones when I can to show her my support. :)
I'm excited about this new program, but I realized that with going to full day preschool Monday to Thursday, we will only be able to do the 30 minute session once in the afternoon. The bus picks her up at 6:45 am and brings her home now at 2:45 pm. I plan to try the headphones right after she gets home, and hope it won't be too tiring for her.
Sunday, March 25, 2012
Busy Friday Part 2: Our First Respite Night
DATE NIGHT. One of my favorite phrases. :)
We were so grateful to partake in our first Respite Night experience. There is a non-profit organization called Corrigan Care that has teamed up with a local indoor play center Little Bears to provide monthly Respite Nights for parents with small children with disabilities. They had a whole team of ladies taking care of the group of kids with special needs and their siblings on a Friday evening for a very small cost. I was so shocked when we dropped the kids off because the respite team took over right away, putting name tags on the kids and whisking them away to play before I could even say goodbye. I expected them to ask us a lot of questions about each kid, but they practically pushed us out the door. I had previously filled out a packet of questions about Gwyneth, but there wasn't much about Ryker at all. They took the paperwork, told us to put each kid's supplies in the little cubbies labeled with their names, and then said "We got it. Go have a good time."
I hate admitting that it was hard for me to give up control like that. But it was SO good for me. I felt completely at ease that the kids were taken care of by pros. Reid and I really enjoyed our fancy dinner out in Dunwoody.
When we returned to Little Bears to pick them up, they were exhausted from non-stop play, but they were in heaven. I had bought them each a sleeping bag and packed their PJs, but I guess there was no time to settle down even though it was hours past their bedtime. Within minutes of getting in the car, they were asleep.
We can't wait until next month's date night. What an incredible service these organizations are providing for the special needs community.
We were so grateful to partake in our first Respite Night experience. There is a non-profit organization called Corrigan Care that has teamed up with a local indoor play center Little Bears to provide monthly Respite Nights for parents with small children with disabilities. They had a whole team of ladies taking care of the group of kids with special needs and their siblings on a Friday evening for a very small cost. I was so shocked when we dropped the kids off because the respite team took over right away, putting name tags on the kids and whisking them away to play before I could even say goodbye. I expected them to ask us a lot of questions about each kid, but they practically pushed us out the door. I had previously filled out a packet of questions about Gwyneth, but there wasn't much about Ryker at all. They took the paperwork, told us to put each kid's supplies in the little cubbies labeled with their names, and then said "We got it. Go have a good time."
I hate admitting that it was hard for me to give up control like that. But it was SO good for me. I felt completely at ease that the kids were taken care of by pros. Reid and I really enjoyed our fancy dinner out in Dunwoody.
When we returned to Little Bears to pick them up, they were exhausted from non-stop play, but they were in heaven. I had bought them each a sleeping bag and packed their PJs, but I guess there was no time to settle down even though it was hours past their bedtime. Within minutes of getting in the car, they were asleep.
We can't wait until next month's date night. What an incredible service these organizations are providing for the special needs community.
Tuesday, March 20, 2012
Busy Friday Part 1: 4-Year Check-up
Last Friday afternoon, the kids and I spent a grueling 1 hour and 45 minutes at the pediatrician (Dr. H) for Gwyneth's 4 year "Wellness" check-up. I'm starting to notice another difference between having a typical and non-typical kid. Gwyn has a lot more medical appointments (at least 2 every month) and even the standard check-ups are much more involved. When I took Ryker to his 1 year appointment, it was In & Out, Here's Some Shots, Bye-bye... but Gwyn gets some special treatment....
Here are Gwyn's 4 year measurements:
28 pounds, 13 ounces
35 inches
(A side note: she won't stand independently yet, so at EVERY single doctor appointment I have to tell the nurse: "Oh she can't stand yet, so you have to use the baby scale to weigh her." I can't wait to not have to say that anymore.)
She's below the 5th percentile on the typical growth charts, so the doctor and nurse had to fish for the Down syndrome chart. They kindly made a copy for me since I only have the 0-36 month charts. The new charts they gave me are for Girls with Down syndrome from age 2 to 18 years. Gwyn is in about the 40th percentile for both weight and height.
They asked about Hearing and Vision screenings, which is probably standard for 4-year-olds starting kindergarten in a year or so. I agreed we could try both. The attempted Hearing test wasn't successful because Gwyn couldn't hold still enough. We'll try it again at the Audiologist this year. The Vision test was a pleasant surprise: she was very cooperative and passed 20/20. The nurse held up pictures and pointed to each in turn, asking "What's this?" I was so happy to hear Gwyn answer right away with the answers, even when the pictures were very tiny. It made me so proud.
We had some new questions to answer this time, which I was hoping were the standard 4 year developmental questions because I was able to answer some of them with "Yes" or "Sometimes." I remember filling out a 1-year-old developmental questionnaire that asked if she was pulling to stand, and she wasn't even sitting up yet. I could have finally answered Yes this year to the pulling to stand question...hmm. Dr. H also asked about how often Gwyn received Physical and Speech therapy.
We discussed again Gwyn starting the Therapeutic Listening program with her Occupational Therapist and she gave me a prescription for the Sennheiser headphones. I don't know yet if Medicaid will reimburse us for this purchase, but I thought a prescription is the first place to start. The doctor and I also talked about our upcoming Katie Beckett Medicaid Waiver renewal. We have to reapply every year and the pediatrician has to write and sign in the application. The pediatric group just decided to start charging a $25 fee to complete this paperwork. Bummer, but it's worth it to get the Medicaid. It has paid for medical appointments, adaptive equipment, and therapy for Gwyneth.
Then they did a CBC blood test, which I just had to look up to remember what it was... It stands for Complete Blood Count and it measures white blood cells, red blood cells, platelets, etc. The pediatrician offered this test because there is a higher risk of leukemia for kids with Down syndrome. They took blood from Gwyn's finger to do this test, which she screamed about and was even acting mad at the band-aid wrapped around her finger. They had the results quickly and the pediatrician gave me a printout. I really don't understand all of the numbers, but some were just below or just above the "normal range" and these items were highlighted. Dr. H did not feel that there was anything to be concerned about because nothing was too far outside the normal range. Out of 17 things measured, 4 came back "low" and 3 "high" but 10 are "normal."
We discussed another blood test which I have been avoiding: the Thyroid blood test. I declined it again this year because it requires blood from a vein, and we had a bad experience with a pediatrician's office trying to find Gwyneth's veins. It took 4 different people and many many pokes in both Gwyn's arms. She just has very small veins and I don't want to put her through that again. So I mentioned that she has an appointment with the Emory Down Syndrome Clinic in April and I could have them do the Thyroid test. I'm hoping that they will be more practiced at taking blood from tiny veins...
Dr. H suggested that when we go to the Emory appointment I ask them about Gwyn having a pneumonia shot. She has already had a flu shot this season. She checked Gwyn's eye which we were treating with drops for pink eye, and since the eye looked fine, she said we could stop the drops. Hurray! I also told Dr. H that I had scheduled Gwyn's surgery to remove her tonsils and adenoids. She thought it was likely that Gwyn would be kept overnight at the hospital after the surgery.
Gwyn had to then get 3 vaccine shots, one in each arm and one in her thigh. She handled it better than the fingerstick blood draw. And finally our appointment was done!
Here are Gwyn's 4 year measurements:
28 pounds, 13 ounces
35 inches
(A side note: she won't stand independently yet, so at EVERY single doctor appointment I have to tell the nurse: "Oh she can't stand yet, so you have to use the baby scale to weigh her." I can't wait to not have to say that anymore.)
She's below the 5th percentile on the typical growth charts, so the doctor and nurse had to fish for the Down syndrome chart. They kindly made a copy for me since I only have the 0-36 month charts. The new charts they gave me are for Girls with Down syndrome from age 2 to 18 years. Gwyn is in about the 40th percentile for both weight and height.
They asked about Hearing and Vision screenings, which is probably standard for 4-year-olds starting kindergarten in a year or so. I agreed we could try both. The attempted Hearing test wasn't successful because Gwyn couldn't hold still enough. We'll try it again at the Audiologist this year. The Vision test was a pleasant surprise: she was very cooperative and passed 20/20. The nurse held up pictures and pointed to each in turn, asking "What's this?" I was so happy to hear Gwyn answer right away with the answers, even when the pictures were very tiny. It made me so proud.
We had some new questions to answer this time, which I was hoping were the standard 4 year developmental questions because I was able to answer some of them with "Yes" or "Sometimes." I remember filling out a 1-year-old developmental questionnaire that asked if she was pulling to stand, and she wasn't even sitting up yet. I could have finally answered Yes this year to the pulling to stand question...hmm. Dr. H also asked about how often Gwyn received Physical and Speech therapy.
We discussed again Gwyn starting the Therapeutic Listening program with her Occupational Therapist and she gave me a prescription for the Sennheiser headphones. I don't know yet if Medicaid will reimburse us for this purchase, but I thought a prescription is the first place to start. The doctor and I also talked about our upcoming Katie Beckett Medicaid Waiver renewal. We have to reapply every year and the pediatrician has to write and sign in the application. The pediatric group just decided to start charging a $25 fee to complete this paperwork. Bummer, but it's worth it to get the Medicaid. It has paid for medical appointments, adaptive equipment, and therapy for Gwyneth.
Then they did a CBC blood test, which I just had to look up to remember what it was... It stands for Complete Blood Count and it measures white blood cells, red blood cells, platelets, etc. The pediatrician offered this test because there is a higher risk of leukemia for kids with Down syndrome. They took blood from Gwyn's finger to do this test, which she screamed about and was even acting mad at the band-aid wrapped around her finger. They had the results quickly and the pediatrician gave me a printout. I really don't understand all of the numbers, but some were just below or just above the "normal range" and these items were highlighted. Dr. H did not feel that there was anything to be concerned about because nothing was too far outside the normal range. Out of 17 things measured, 4 came back "low" and 3 "high" but 10 are "normal."
We discussed another blood test which I have been avoiding: the Thyroid blood test. I declined it again this year because it requires blood from a vein, and we had a bad experience with a pediatrician's office trying to find Gwyneth's veins. It took 4 different people and many many pokes in both Gwyn's arms. She just has very small veins and I don't want to put her through that again. So I mentioned that she has an appointment with the Emory Down Syndrome Clinic in April and I could have them do the Thyroid test. I'm hoping that they will be more practiced at taking blood from tiny veins...
Dr. H suggested that when we go to the Emory appointment I ask them about Gwyn having a pneumonia shot. She has already had a flu shot this season. She checked Gwyn's eye which we were treating with drops for pink eye, and since the eye looked fine, she said we could stop the drops. Hurray! I also told Dr. H that I had scheduled Gwyn's surgery to remove her tonsils and adenoids. She thought it was likely that Gwyn would be kept overnight at the hospital after the surgery.
Gwyn had to then get 3 vaccine shots, one in each arm and one in her thigh. She handled it better than the fingerstick blood draw. And finally our appointment was done!
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