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.
Sunday, March 25, 2012
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!
Friday, March 16, 2012
Friday at the Farm: Prelude to a Busy Day
I missed my update last week because I was recovering from a bad case of Vertigo which started March 4th and is still not completely gone. My mom came to Georgia to take care of the kids, so she drove us last Friday to Gwyn's therapy appointments.
This week Gwyneth has antibiotic eye drops to deal with because Pink Eye has been going around. She is just in between the baby/toddler stage of not understanding what is going on, and the kid stage of understanding enough to know that I want her to hold still for the eye drops. This means there is a lot of squirming and shouting "no!" from her, a lot of pleading and restraining from me, and a lot of extra praise "yay, you did it" "yay, I did it, good job" from both of us when we're done with 2 drops. But she was in good spirits for Therapy and got through both OT and PT well (no Speech this morning).
We had a very busy Friday today which included Gwyn's 4-year-old pediatrician check-up and our first ever Respite Night experience, so more on those events later...
Gwyn had her 4th birthday last week, but sadly I was confined to bed with Vertigo so we weren't able to officially celebrate. I also missed the End the Word awareness day on March 7th.
More soon...
This week Gwyneth has antibiotic eye drops to deal with because Pink Eye has been going around. She is just in between the baby/toddler stage of not understanding what is going on, and the kid stage of understanding enough to know that I want her to hold still for the eye drops. This means there is a lot of squirming and shouting "no!" from her, a lot of pleading and restraining from me, and a lot of extra praise "yay, you did it" "yay, I did it, good job" from both of us when we're done with 2 drops. But she was in good spirits for Therapy and got through both OT and PT well (no Speech this morning).
We had a very busy Friday today which included Gwyn's 4-year-old pediatrician check-up and our first ever Respite Night experience, so more on those events later...
Gwyn had her 4th birthday last week, but sadly I was confined to bed with Vertigo so we weren't able to officially celebrate. I also missed the End the Word awareness day on March 7th.
More soon...
Friday, March 2, 2012
Friday at the Farm: The Art of Hugging
Gwyneth had a short bout of crying today near the end of PT. She had been standing at a fridge playing with magnets and was getting very tired and afraid when Leslie didn't hold onto her. When Leslie tried to walk away to get the walker, Gwyn started crying.
She had been walking around the whole time, being challenged by Leslie to walk while holding onto less stable objects like a foam swimming noodle or hula hoop. Or to let go of one hand while walking. This is challenging for her because she is fearful of standing or walking without being held. Leslie said she has "mastered the art of hugging" to try to get support when she's standing. How funny that Gwyn tries to use her cuteness to get out of PT work.
Thursday, March 1, 2012
IEP Meeting Highlights
Yesterday was Gwyneth's yearly IEP meeting at school. She has been attending the 4-day-a-week, morning pre-K class at a nearby elementary school for almost a year now. I can't believe how much she has changed in a year. She is still not walking independently, but we can see the light at the end of the tunnel for that milestone. Overall she just seems so grown-up to me; like a little kid and not my baby anymore.
IEP highlights:
She will start full day class - still just 4 days per week - on March 12. I am so glad that the teachers and therapists agreed she is ready (and that a spot opened up). I didn't ask about the possibility that she would be changing schools next year, but they said she could go all 5 days per week when school starts up again in August. I heard that another special needs pre-K class has been created at the elementary school we are now zoned for, so she might be moved over the summer.
PT - New goals include standing independently for 5 seconds, pulling herself up into her walker, and walking with only one hand held by an adult for 10 feet.
OT - New goals include drinking from a cup, holding a writing utensil with tripod grasp, and placing beads on a string.
Speech - Goals include stating her name and age when asked, answering simple questions accurately using 1-2 intelligible words, answering yes/no questions, and verbalizing her wants and needs using short sentences.
IEP highlights:
She will start full day class - still just 4 days per week - on March 12. I am so glad that the teachers and therapists agreed she is ready (and that a spot opened up). I didn't ask about the possibility that she would be changing schools next year, but they said she could go all 5 days per week when school starts up again in August. I heard that another special needs pre-K class has been created at the elementary school we are now zoned for, so she might be moved over the summer.
PT - New goals include standing independently for 5 seconds, pulling herself up into her walker, and walking with only one hand held by an adult for 10 feet.
OT - New goals include drinking from a cup, holding a writing utensil with tripod grasp, and placing beads on a string.
Speech - Goals include stating her name and age when asked, answering simple questions accurately using 1-2 intelligible words, answering yes/no questions, and verbalizing her wants and needs using short sentences.
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