- Randy taught him how to "bonk" his head and "thump" his belly. He does this very well, and not always at the best times! Sometimes he bonks his head while he is holding a toy, and when we try to stop him from hitting himself, he starts to belly laugh. He thinks it is so funny when we tell him not to hit himself!
- Now that he has mastered "bonking" and "thumping" his own body parts, he are trying to get him to bonk and thump us, so that he learn more about body parts. We are also trying to work on "honking" his nose. This has the double advantage of working on finger isolation for poking things, which we are working on in OT. (We try to pop bubbles with one finger.) This weekend he seems to be understanding a little more. And Travis is being such a good teacher!
- Justin has starting trying to pull himself up on the edge of tables, and particularly the edge of the bathtub (we have a shower door on the bathtub- that's actually the first place Travis pulled himself up too!) He started by sitting with one leg tucked in and pulling himself up that way, but now he is able to move his legs around and almost get himself onto his knees (in tall kneeling, our PT calls it).
- Justin is able to eat just about whatever we eat, but he won't pick pieces up off his tray. I have stopped fixing him his own plate at mealtime. I just add more to my plate and we share, since he wants whatever I have anyway. He ate 2 pieces of pizza the other night at a birthday party. And then he wanted cake too! He even likes drinking from my glass, and you know how kids like to leave floaties! I just started buying limes to squeeze into my water and then I don't notice quite as much...
- Nap time is a big struggle. He needs 2 naps, but the timing is really messed up. I am considering moving therapy times, but the times we have work really well. Napping has always been one of our kids' biggest struggles. We do like snuggling with them to get them to sleep though! We are big snugglers!
- Our speech therapist told us to start listening for Justin to name things, even if it's not the right name. Just to see if he is intentional with his babbling. That got me so excited to think that we might be at that point! He is definitely asking for things, especially while we eat. (I KNOW when he wants my drink!)
- And speaking of speech therapists, our usual therapist has another job that takes her out of town one week out of the month during the school year. So we have a "temp" once a month. She is the therapist who did Justin's evaluation. I was feeling a little disappointed at having the break in continuity, but I really like Miss Yvonne, and she happened to mention this last month that maybe I was noticing a little different focus between her and Miss Char. Miss Yvonne emphasizes more communication (she does more signing and interaction) and Miss Char works more on sounds and articulation (she does more imitation and exaggerated mouth sounds). So then I realized how blessed we are to be getting some of both!
Saturday, November 28, 2009
Justin Update
This is some of what Justin has been doing lately:
Thursday, November 26, 2009
Happy Thanksgiving!
We had a wonderful Thanksgiving today. We spent the day with Randy's family. His brother and his wife came down from Dallas along with their daughter, cousin Lauren. We ate a yummy lunch and then the kids took a WAY too short nap before dessert time.
Justin enjoyed his dessert, from the corner of the chair! Randy could not get it in fast enough, and Justin complained every time he took a bite himself.
Dale loves being a kid and he loves playing with his grandkids! Randy taught Justin to "bonk" his head, and he likes showing everyone what he can do.
Travis and Aunt Kristi listened to the police band radio and all the emergency calls. I am serious! He listened and Uncle Craig (a police officer) would interpret the calls. Travis was bouncing all over the couch, soaking up every second of it!
Travis really likes playing with Aunt Kristi. He didn't want to eat dinner because he couldn't play with Aunt Kristi. When he went to bed tonight he told ne how much he was going to miss Aunt Kristi and he wanted to know when she would come back.
No, we don't have a daughter, but when we mentioned pictures, cousin Lauren came and joined us. You can tell Travis really enjoyed the photo shoot!
And this was the best we could do with all the kids.
This is what the kids really wanted to do...
Escape!
Tuesday, November 24, 2009
Doughnut Day
We started Doughnut Day this summer to help Travis on the days he had to go to someone's house while Justin and I went to therapy. My theory was having something special in the morning would make the transition easier when I had to leave him. Plus, he would sometimes ask to take doughnuts as a treat for whomever would be keeping him. It has been a BIG hit and we have continued Doughnut Day even after therapy changed days and the schedule shifted.
We go to a little Mom and Pop doughnut shop run by a family from Cambodia. The woman who is always at the counter is so good to Travis. He started out getting one chocolate doughnut with sprinkles, and I would get 2 old fashioned, until one day I was in the mood for a long john (you know, an eclair with custard filling). Travis was intrigued and asked to taste it. He was hooked, and he came up with the great idea to switch plates that day. So I had a chocolate doughnut with sprinkles, and he ate my long john. The things we do for love...
Now he gets 2 doughnuts every week: a long john, and something else. He sits on the counter and searches for just the right doughnut. It is never the same from week to week. He has ordered powdered sugar, chocolate, coconut, pink glazed, and he has even tried cinnamon rolls and twists, which are about as big as his head! He is covered with glaze and chocolate from ear to ear by the time he declares he is finished. He takes his basket up to the counter, and she bags his doughnuts to go, along with a few doughnut holes! Today Travis wanted to take a picture he had made and give it to her, and I think she just about cried! I can see her face light up when she sees Travis come in and she loves trying to figure out which other doughnut he will pick that day. One day we went a bit later than usual and they were out of long johns. Travis was very upset! We promptly picked up a card and put their number in my phone so we can call ahead when we are running a little late.
We feel like we are part of the family at the shop. We are almost "regulars" and we recognize people and can greet them like old friends. And the woman behind the counter, she is amazing! She greets everyone who walks in with a cheery, "Hi! How are you?" She remembers what everyone likes and she asks, "No kolache today?" when they don't go with the usual.
She was pregnant last summer and asked Randy for all kinds of information about pediatricians, since she knew that we had just had Justin. She ended up having twin boys born at around 28 weeks. One only lived for about 3 days and the other boy remained in the hospital for several months. In talking with her we learned that we have the same ECI therapist and we have shared stories about "our boys". Her son is now one, and while he is not walking, he is cruising while holding on the furniture and it will not be long. Today for the first time she showed me pictures and told me how hard it is having one surviving son. She said they looked so much alike. I feel so privileged to share that part of her life.
Travis doesn't know all his days of the week yet, but he knows Tuesday is Doughnut Day. It has been great for our family, and Justin is learning to love doughnuts too!
We go to a little Mom and Pop doughnut shop run by a family from Cambodia. The woman who is always at the counter is so good to Travis. He started out getting one chocolate doughnut with sprinkles, and I would get 2 old fashioned, until one day I was in the mood for a long john (you know, an eclair with custard filling). Travis was intrigued and asked to taste it. He was hooked, and he came up with the great idea to switch plates that day. So I had a chocolate doughnut with sprinkles, and he ate my long john. The things we do for love...
Now he gets 2 doughnuts every week: a long john, and something else. He sits on the counter and searches for just the right doughnut. It is never the same from week to week. He has ordered powdered sugar, chocolate, coconut, pink glazed, and he has even tried cinnamon rolls and twists, which are about as big as his head! He is covered with glaze and chocolate from ear to ear by the time he declares he is finished. He takes his basket up to the counter, and she bags his doughnuts to go, along with a few doughnut holes! Today Travis wanted to take a picture he had made and give it to her, and I think she just about cried! I can see her face light up when she sees Travis come in and she loves trying to figure out which other doughnut he will pick that day. One day we went a bit later than usual and they were out of long johns. Travis was very upset! We promptly picked up a card and put their number in my phone so we can call ahead when we are running a little late.
We feel like we are part of the family at the shop. We are almost "regulars" and we recognize people and can greet them like old friends. And the woman behind the counter, she is amazing! She greets everyone who walks in with a cheery, "Hi! How are you?" She remembers what everyone likes and she asks, "No kolache today?" when they don't go with the usual.
She was pregnant last summer and asked Randy for all kinds of information about pediatricians, since she knew that we had just had Justin. She ended up having twin boys born at around 28 weeks. One only lived for about 3 days and the other boy remained in the hospital for several months. In talking with her we learned that we have the same ECI therapist and we have shared stories about "our boys". Her son is now one, and while he is not walking, he is cruising while holding on the furniture and it will not be long. Today for the first time she showed me pictures and told me how hard it is having one surviving son. She said they looked so much alike. I feel so privileged to share that part of her life.
Travis doesn't know all his days of the week yet, but he knows Tuesday is Doughnut Day. It has been great for our family, and Justin is learning to love doughnuts too!
Monday, November 23, 2009
Vision
Today I had a vision of how my life will be after afternoon naps end, and it was not pretty.
I should have known it was not going to be the day I had planned when Justin was crawling around at therapy this morning (Speech therapy, mind you) and he face planted into the floor and put his teeth through his lower lip. He bled everywhere (lips usually do). We managed to find ice and calm him down, and we were able to continue for a little while. Oh, and did I mention I was wearing a white shirt?
Then I swung by to get Travis from where he was staying during therapy, and we rushed to the grocery store to fit shopping in before swimming lessons. (I usually try to cram too much into every single day...) We were cruising and we made it out with almost everything on our list and with a little luck from the stop lights, we should have just been able to make it on time. If we would have had swimming lessons today...
Oh yeah, I haven't been taking Travis to lessons because the only time we could fit it in was during therapy, so a friend has taken him for the past 3 months. This was the first session that I would be able to go and watch him swim. I verified that there would be class this week of Thanksgiving, and I was there and ready, but they decided that too many people would be gone and they would make up the time later...
Ooops. That's what I get for not taking my own son to class...
Moving on: I had some other errands to run (library, car registration, church) and Justin fell asleep in the car on the way home. He has been considering dropping his morning nap, but he cannot make it until lunch time without it. So when he didn't wake up when we pulled into the garage, I knew lunch wasn't an option. Sleep always trumps food for Justin. He slept for 2 hours, and Travis was bouncing off the walls. I had to get 40 letters in the mail for a church event and Travis did not like that I couldn't play "worker" with him. So we played worker until he was ready for lunch. And then I got a call from a friend who just had a baby this morning and was sharing some of the details. I missed the doorbell. Twice. Travis had to come and pull my arm to get me to the door.
Then Justin woke up. So it was 1 pm and Travis was still eating and Justin didn't think he was ready for lunch. More phone calls and doorbells and it was 1:45 before Travis went to bed for his nap. I started to fold the 4 loads of laundry that were clean, but still in the baskets. I could hear Travis singing and talking upstairs so I turned on the monitor. The songs he was making up and the stories he was telling were too funny for me not to share. So I called Randy at work and had him listen and we laughed together. That lasted for 1 1/2 HOURS, and I finally got him out of bed.
I still hadn't gotten the letters in the mail, which I really wanted to do today. I checked to make sure the mail hadn't come and I rushed inside to finish the last few. Oh yeah, they came and left during that time which meant I now had a trip to the post office in my future! Not too bad, considering I really wanted to go visit new Baby Robert. We had one more knock on the door, our neighbors selling homemade cookies. Oh, yeah, I am having one of those!
We ran out to see Robert, and came home to Justin totally exhausted and unwilling to do anything! I hadn't been able to start dinner during naps, because oh yeah, they didn't both nap at the same time!!! So I sent Justin to bed (at 5:30), and hauled the rocking horse into the kitchen for Travis while I cooked. Dinner was lovely and Travis ate it ALL. (I love it when that happens.) And I had to wake Justin before he called it a night. He wasn't liking being awakened and nothing was making him happy, so we took a bath. Before the bath, Justin finally got out the poopy diaper he had been working on all day (probably the cause of his frustration), but then in the tub he decided he had a little bit more. After hauling the kids out, draining, washing, refilling, and finally washing the kids, Justin was ready for dinner.
Travis wanted to feed him. My crazy toddler, who hadn't taken a nap, wanted to feed my freshly washed baby. "Sure, why not?" The day was almost over. I knew we were on the downhill slope. I could make it just a little longer! Travis did so well, and Justin was mesmerized! He thought it was so cool! He ate all his dinner too! (We had ranch chicken, mashed potatoes, and broccoli, if you were wondering.)
We were so close! One more book for each and they were both in bed. I wasn't sure Justin would be ready after being up only an hour, but he let out a big sigh as I lifted him over the rails of his crib, and he was down for the night. Travis kicked and screamed, but so far he has stayed in his room. I didn't even have to threaten him.
Wow. I need a little hubby snuggle and the laundry fairy to finish up around here. Anyone know her number?
I should have known it was not going to be the day I had planned when Justin was crawling around at therapy this morning (Speech therapy, mind you) and he face planted into the floor and put his teeth through his lower lip. He bled everywhere (lips usually do). We managed to find ice and calm him down, and we were able to continue for a little while. Oh, and did I mention I was wearing a white shirt?
Then I swung by to get Travis from where he was staying during therapy, and we rushed to the grocery store to fit shopping in before swimming lessons. (I usually try to cram too much into every single day...) We were cruising and we made it out with almost everything on our list and with a little luck from the stop lights, we should have just been able to make it on time. If we would have had swimming lessons today...
Oh yeah, I haven't been taking Travis to lessons because the only time we could fit it in was during therapy, so a friend has taken him for the past 3 months. This was the first session that I would be able to go and watch him swim. I verified that there would be class this week of Thanksgiving, and I was there and ready, but they decided that too many people would be gone and they would make up the time later...
Ooops. That's what I get for not taking my own son to class...
Moving on: I had some other errands to run (library, car registration, church) and Justin fell asleep in the car on the way home. He has been considering dropping his morning nap, but he cannot make it until lunch time without it. So when he didn't wake up when we pulled into the garage, I knew lunch wasn't an option. Sleep always trumps food for Justin. He slept for 2 hours, and Travis was bouncing off the walls. I had to get 40 letters in the mail for a church event and Travis did not like that I couldn't play "worker" with him. So we played worker until he was ready for lunch. And then I got a call from a friend who just had a baby this morning and was sharing some of the details. I missed the doorbell. Twice. Travis had to come and pull my arm to get me to the door.
Then Justin woke up. So it was 1 pm and Travis was still eating and Justin didn't think he was ready for lunch. More phone calls and doorbells and it was 1:45 before Travis went to bed for his nap. I started to fold the 4 loads of laundry that were clean, but still in the baskets. I could hear Travis singing and talking upstairs so I turned on the monitor. The songs he was making up and the stories he was telling were too funny for me not to share. So I called Randy at work and had him listen and we laughed together. That lasted for 1 1/2 HOURS, and I finally got him out of bed.
I still hadn't gotten the letters in the mail, which I really wanted to do today. I checked to make sure the mail hadn't come and I rushed inside to finish the last few. Oh yeah, they came and left during that time which meant I now had a trip to the post office in my future! Not too bad, considering I really wanted to go visit new Baby Robert. We had one more knock on the door, our neighbors selling homemade cookies. Oh, yeah, I am having one of those!
We ran out to see Robert, and came home to Justin totally exhausted and unwilling to do anything! I hadn't been able to start dinner during naps, because oh yeah, they didn't both nap at the same time!!! So I sent Justin to bed (at 5:30), and hauled the rocking horse into the kitchen for Travis while I cooked. Dinner was lovely and Travis ate it ALL. (I love it when that happens.) And I had to wake Justin before he called it a night. He wasn't liking being awakened and nothing was making him happy, so we took a bath. Before the bath, Justin finally got out the poopy diaper he had been working on all day (probably the cause of his frustration), but then in the tub he decided he had a little bit more. After hauling the kids out, draining, washing, refilling, and finally washing the kids, Justin was ready for dinner.
Travis wanted to feed him. My crazy toddler, who hadn't taken a nap, wanted to feed my freshly washed baby. "Sure, why not?" The day was almost over. I knew we were on the downhill slope. I could make it just a little longer! Travis did so well, and Justin was mesmerized! He thought it was so cool! He ate all his dinner too! (We had ranch chicken, mashed potatoes, and broccoli, if you were wondering.)
We were so close! One more book for each and they were both in bed. I wasn't sure Justin would be ready after being up only an hour, but he let out a big sigh as I lifted him over the rails of his crib, and he was down for the night. Travis kicked and screamed, but so far he has stayed in his room. I didn't even have to threaten him.
Wow. I need a little hubby snuggle and the laundry fairy to finish up around here. Anyone know her number?
Saturday, November 21, 2009
Letter
I was thinking earlier this week that I hadn't heard from the DS Clinic. It took me several minutes for me to realize that that was probably a GOOD thing. And my thoughts were confirmed this week when we got...
A LETTER!!
The very good thing! NO celiac disease! One more thing we can cross off our list!
A LETTER!!
The very good thing! NO celiac disease! One more thing we can cross off our list!
Wednesday, November 18, 2009
Catching Up
When my sister was in this week she brought me some pictures of our trip to Seattle in October and of her wedding. So here's some catching up:
Oh, yeah, it's all about the tractor!
Practicing lifting the bucket.
All loaded up and ready to go!
I love this picture at the pumpkin patch... it looks like Travis has antlers!
In the pumpkin patch, trying to lift the biggest one he can find!
All ready for the boat ride!
This was on the boat ride. It looks like Justin's head is going to pop off! It really wasn't that bad, I promise!
Oh, yeah, it's all about the tractor!
Practicing lifting the bucket. 
All loaded up and ready to go!
I love this picture at the pumpkin patch... it looks like Travis has antlers!
In the pumpkin patch, trying to lift the biggest one he can find!
All ready for the boat ride!This was on the boat ride. It looks like Justin's head is going to pop off! It really wasn't that bad, I promise!
Tidbits
Just a few things:
- We have been having some problems getting the new patio door finished and stained. Some of the trim pieces are not the right kind of wood, and fortunately the stainer noticed it before he started staining. It would not look right with different kinds of wood being stained. So they are ordering some new trim pieces (to go with the new screens...) and we're hoping it will be our Christmas present!
- Justin is doing fabulous in OT. We have been doing some sensory therapy to help him get over his issues with picking up food. I can tell you with confidence that it is NOT the texture that bothers him. He smeared yogurt all over the tray and himself today at therapy. And he picked out the little bits of veggie sticks from the yogurt mess and happily crunched them.
- Justin is also doing well at picking things up with the right side of his hand (the thumb side). He is using both hands, but he seems to prefer his left these days.
- Travis is Mr. Imagination these days. He is playing "worker", a favorite game, and he invented marshmallow caulking that he applies to the new windows with a ribbon attached to his rocking horse, and there is a button on the horse that makes it start and stop. SO funny!
- Travis also enjoyed having Uncle Jerry and Ami here for a visit for the Buddy Walk. He enjoys Uncle Jerry throwing him high in the air- and I mean HIGH. Our living room has a vaulted ceiling and he uses it! They have worked on "flying with style" and Travis puts one hand behind his head and points with the other one. Or the puts his head up and arms out, like an airplane. It makes me cry I laugh so hard!
- I did some "bulk cooking" with a friend after the last Meat Day. We went crazy and cooked about 40 pounds of meat: 5 pounds of BBQ pork, 2 crock pots of spaghetti sauce, 2 pots of taco soup, 4 batches of chuckwagon wraps (ground beef, BBQ-flavored beans, corn, a few other things), 4 meatloaves, and seasoned 16 chicken breasts. Plus we made 24 pumpkin muffins. Such a fun experience! Except for clean up....
Sunday, November 15, 2009
Buddy Walk 2009
We had a wonderful Buddy Walk! The weather was perfect- warm and sunny- and the group was so enthusiastic and energetic. We had 50 team members walk with us! We arrived early and blew up Justin's balloons and collected the rest of our team's t-shirts. The plaza quickly filled with people. Our shirts were blue, Justin's shirt (and others with DS) was red, and the volunteers wore yellow. The volunteers lined the path, cheering us on and waving signs. The path was a little different this year, but we still walked along the bayou and enjoyed a little of the beauty of downtown Houston. The DSAH met their goal for fundraising too, which was great! Some friends who I didn't know were going to come were my photographers, and they took over 100 pictures during the Walk! Here are some of my favorites, but I reserve the right to share more later.
There were some police officers at the end of the route giving out medals to all the kids. They were very nice medals. They have the Buddy Walk logo on the front and on the back they say "Things keep looking up! DSAH-2009". I heard today at church that one of the girls wore her medal the whole rest of the day!
I cannot express the blessing of friendship. Seeing the huge group that we had and knowing that each person loves Justin and our family humbles me. We walked across the back of the stage in the plaza where the whole 3,000+ people were gathered before the Walk and I was awed by the sea of blue peppered with red. It was one day that we could unite in our experiences with DS. No two are the same, but we could all say that we shared something unexpected that had become a unique blessing. It was a day to celebrate the differences and revel in our common bond. It wasn't a "walk" we would have chosen, but a walk we now embrace for our children, our friends, our family, our future. Each one of those red shirts is a special person, valuable and well-loved. It was a good day.
Thursday, November 12, 2009
The Results are In
Last week when we were at the DS Clinic, the doctor (Dr. Kathleen) said that she wanted to repeat some of the blood work that had been done at his one-year appointment, so we went on Friday to have the blood drawn. Justin is getting so smart and he knows when we lay him down on white paper, it is not going to be good. It means shots or worse, a blood draw. He did very well, and we are learning who the good phlebotomists are. We were told we would hear when the results came back: a phone call for bad news, and a letter for good. (That's my simplified interpretation.)
Yesterday, I got a phone call.
It was the thyroid, just what Dr. Kathleen had expected. His TSH (thyroid-stimulating hormone) is elevated which means he has compensated hypothyroidism. What I have read says that the pituitary gland makes TSH and sends it to the thyroid gland to cause it to make T3 and T4 which are thyroid hormones. The thyroid hormones are responsible for growth, puberty, reaction to stress, temperature regulation, and urine output. Because his TSH level is high, it means his thyroid is having to work harder to maintain the levels his body needs. It might NOT be able to produce enough for his body, which causes the body's metabolism to slow, resulting in fatigue, a lowered heart rate and blood pressure, slowing of the intestines leading to constipation, and a constant feeling of being cold. These are all things that Justin has has trouble with, so I am really hoping this solves some of his problems.
SO...
Another doctor. We have to get an appointment with an endocrinologist. And from what I went through yesterday, it's not easy. Some of these doctors have some major obstacles constructed to make certain that they only have to see patients who really need their services. I spent 20 minutes being transferred to several different people, none of whom could tell me exactly what I needed to do to get an appointment. I think I am on the right track though. They need to see all of Justin's medical records and screen them before they will call me to set up and appointment. I am not sure how long this process takes.
And the results of the celiac test are not in yet. That will be another week or so. So there may be more coming. Keep praying please!
(Information for this post was taken from an article "Late Effects to the Thyroid Gland")
Yesterday, I got a phone call.
It was the thyroid, just what Dr. Kathleen had expected. His TSH (thyroid-stimulating hormone) is elevated which means he has compensated hypothyroidism. What I have read says that the pituitary gland makes TSH and sends it to the thyroid gland to cause it to make T3 and T4 which are thyroid hormones. The thyroid hormones are responsible for growth, puberty, reaction to stress, temperature regulation, and urine output. Because his TSH level is high, it means his thyroid is having to work harder to maintain the levels his body needs. It might NOT be able to produce enough for his body, which causes the body's metabolism to slow, resulting in fatigue, a lowered heart rate and blood pressure, slowing of the intestines leading to constipation, and a constant feeling of being cold. These are all things that Justin has has trouble with, so I am really hoping this solves some of his problems.
SO...
Another doctor. We have to get an appointment with an endocrinologist. And from what I went through yesterday, it's not easy. Some of these doctors have some major obstacles constructed to make certain that they only have to see patients who really need their services. I spent 20 minutes being transferred to several different people, none of whom could tell me exactly what I needed to do to get an appointment. I think I am on the right track though. They need to see all of Justin's medical records and screen them before they will call me to set up and appointment. I am not sure how long this process takes.
And the results of the celiac test are not in yet. That will be another week or so. So there may be more coming. Keep praying please!
(Information for this post was taken from an article "Late Effects to the Thyroid Gland")
Tuesday, November 10, 2009
Dewberry Farm
Travis, Justin, and I took a trip to Brookshire to visit Dewberry Farm yesterday. It is a pumpkin patch and Christmas tree farm basically. But it has taken that to the extreme! It has a corn maze and animals to feed, and play areas with rope swings and roller slides and go carts. It was pretty fun for all the kids. Justin did really well too. We went with a home school group, so we went on a day that is set aside for school groups. It was crazy, but really not too bad. The groups had to start leaving before we did, so the last half hour or so we had the place pretty much to ourselves. Travis wanted to stay forever! Or at least not go home right then. I think we might have to go back. This was definitely the way to go since we didn't have to pay extra for any of the extra activities. Travis loved driving the go carts, and he even got fairly good at it.
It takes some serious concentration to drive one of these go carts!
You have to brake HARD!
The pumpkin patch was pretty bare this time of year. They had some big rains that caused a lot of the pumpkins to rot in the fields. We even had Farmer Dewberry driving our hay ride and he showed us all about the flowers that turn into pumpkins and which are the varieties for jack-o-lanterns and for pie!
We made it through the corn maze!
Fort Dewberry
Buddy Walk Preview
The shirts arrived and the craziness has begun! Out team is over 45 members now, and Travis and I have been distributing t-shirts the past few days. He is quite the helper. Actually, he says that I am the helper and he is the delivery man. I just drive. It's that the way it is with kids? The shirts are navy blue, and everyone with DS gets red shirts. When we are all together it looks amazing to see the sea of matching shirts and the flecks of contrasting color mixed in. And check out our balloons! Aren't they great? Last year there were over 2100 walkers and this year there are already over 3000! We still have more fundraising to go, as we (the Down Syndrome Assoc. of Houston) are about $20,000 short still. If you're interested, you can still walk or just donate. We would love to have you!
Monday, November 9, 2009
Windows
The job that was supposed to take two, maybe three days, ended up being four full days. That was Thursday through Sunday! I never thought they would work on the weekend, but they did. That left Randy to take care of most of it, since I left to go on our church's Ladies Retreat on Friday evening. And he also had to pick up the shirts for the Buddy Walk. Randy definitely deserves big praise for all he had to juggle while I was gone. But everything looks awesome! Everything is done except for the stain on the back door. And somehow a couple of the screens got ripped, so they have to order new ones. But that's not a problem! We've been waiting for how long? What's another month or two...?
I have been waiting to put up our fall window clings because I knew as soon as I put them up they would call and say they were ready to install the new windows and I would have to take it all down. Travis kept walking around saying that the new windows look beautiful. I think the leaves add to the beauty. Travis helped put them up!
I have been waiting to put up our fall window clings because I knew as soon as I put them up they would call and say they were ready to install the new windows and I would have to take it all down. Travis kept walking around saying that the new windows look beautiful. I think the leaves add to the beauty. Travis helped put them up!
Thursday, November 5, 2009
Out with the Old, In with the New
Travis was in construction worker heaven today watching our new door being installed! It was very exciting watching the old door come out, and the new one go in. As you may recall, we had a little "accident" involving an ax, a tree stump, and a glass door last summer. We have been living with plywood covering the door for more than a year. Several times I considered painting it to look like what we would have been seeing, if we had been able to see outside, but then I remembered that I have absolutely NO artistic talent, and I left it alone. There are lots of pictures with the door in the background like that, but we have just accepted it as part of the house. But a few months ago we decided that it was time to fix the plywood door, and render the door operational once again. Mostly it was just the effort in searching for the right door that made us avoid it for so long. We aren't always very good at tackling big projects. Especially when they cause other projects. But this one is on the way to completion. There is still the staining, of course, and we bought a few more windows (another project we have been intending to do for a while...) which are coming tomorrow. Travis is loving the activity, and I love that he can ask the installers all his questions. They have been doing a good job of telling him all that they are doing. We now have French sliding doors, and they are so much better than the old ones, and not just because they all have glass in them! I'll post another picture after the staining.
Wednesday, November 4, 2009
Down Syndrome Clinic
We made our third trip to the Down Syndrome Clinic today. Justin really did well and impressed all the therapists and the new physician in charge of the clinic. We were able to see the PT and the Speech therapist. With the new schedule, they do not have any clinic days with both the PT and OT available, so if we have any concerns we are able to have a phone consult with the therapist we missed. (This time we missed OT.)
We found out that the blood work that was done at his year appointment showed that he has low thyroid (very common in DS) but not too far out of range, so the doctor wants to repeat the labs. She is also requesting the test for celiac disease, which occurs more frequently in people with DS. This is something I have been dreading slightly because of this is something that seems tough to handle, but if it's something we are called to face, I know God will provide. We have to go for the blood draw tomorrow, so please pray for an easy stick.
The PT was pleased with Justin's crawling, but she was concerned that he is not weight bearing on his legs. That is something he has never really wanted to do, and it is something Miss Penny works on every week, but it still isn't something he does on his own. He will not stay standing next to the couch or a table if we help him get there. He will not pull himself to standing. He will stand for a short time with help, but then he collapses. She tried several different ways to get him to weight bear, and just like Miss Penny, she couldn't get him to stand for more than short periods of time. This hasn't really bothered me, but she seemed a bit disturbed, which of course made me more concerned. I am a bit anxious to see what her assessment will say.
Since there was no OT, the doctor did a lot of those tests. It was funny since Justin had just had his OT evaluation, I could see the things she was testing and knew which he could do. The first thing she brought out was a bell, to see if he knew what to do with it, and he went to town with it! There was no doubt that he knew to shake, shake, shake that bell! It was difficult to get him to give it up so we could move on to other tests. He could find the bell under the cloth, he could pick up the small bead (not with pinchers though...), and he fit the circle into the puzzle. He could color with the crayons and fit the peg into the hole. He knew what to do, even if he couldn't always make it work exactly.
Speech was actually Justin's stand out area. The therapist was very impressed with his babbling and sounds. She actually said the words, "I am very impressed" which I get the feeling don't get tossed around very lightly or very often. By this time Justin was getting tired (and even fell asleep while we were talking) so she didn't get as much time with him as she has hoped. We discussed some feeding issues, and she gave us some things to try. We have seen her now three times, and she gives us the most feed back and most ideas in her reports, so that will be helpful.
I brought up the "Magic Age of 2" that the geneticist mentioned when Justin was born. Not because I am wanting their predictions, but because his next DS Clinic appointment will be right after he is 2 and I want to be prepared if there is some big announcement that starts out, "And now we are prepared to tell you how your child will turn out..." When both my kids were born I avoided the words, "always" and "never" for about 6 months because I just didn't think that I had enough experience with them to be able to judge that. Two years seems like a reasonable age, but I wanted to know how the doctor makes the assessment. She said that it is based on how he is doing up until then. For example, Justin was determined to be at about 8/9 months of ability when he was 13 months of chronological age. So using 8.5, that works out to be about 65% of chronological age. If he continues on that same curve, there is a scale that marks his level of impairment (a person who functions at a level of 65% of his chronological age is mild MR- mentally retarded). I am not entirely clear if that is how it usually works, or if there is a chance that he could slide up or down the scale. And I asked if there is any correlation between physical and mental capacity, or if one usually supersedes the other. She said not really, but if there is a choice, it is probably better to focus time and attention to improving speech. You know how little kids are difficult to understand, and people unfamiliar with a child need the parent to "translate"? That's how I envision it being with Justin, and that makes me nervous because I don't want to leave him in a situation in which he cannot communicate his needs or wants. I think that has to feel like abandonment.
I tend to leave the DS Clinic with conflicting emotions. I want them to fix out problems because they are the experts, but when it really comes down to it, Randy and I are the real experts on Justin. They offer some good suggestions, and I am so grateful for that. I am glad we have the DS Clinic and all the other resources we have here because I know so many places have so little to offer. I counted the days to Justin's first DS Clinic visit, thinking we would walk away with a treasure trove of information. Now I think of it more as an opportunity for them to gather information to help others. Sharing what works and what doesn't can only help those who come after us. I think we are so blessed, and I want to pass that on to others.
We found out that the blood work that was done at his year appointment showed that he has low thyroid (very common in DS) but not too far out of range, so the doctor wants to repeat the labs. She is also requesting the test for celiac disease, which occurs more frequently in people with DS. This is something I have been dreading slightly because of this is something that seems tough to handle, but if it's something we are called to face, I know God will provide. We have to go for the blood draw tomorrow, so please pray for an easy stick.
The PT was pleased with Justin's crawling, but she was concerned that he is not weight bearing on his legs. That is something he has never really wanted to do, and it is something Miss Penny works on every week, but it still isn't something he does on his own. He will not stay standing next to the couch or a table if we help him get there. He will not pull himself to standing. He will stand for a short time with help, but then he collapses. She tried several different ways to get him to weight bear, and just like Miss Penny, she couldn't get him to stand for more than short periods of time. This hasn't really bothered me, but she seemed a bit disturbed, which of course made me more concerned. I am a bit anxious to see what her assessment will say.
Since there was no OT, the doctor did a lot of those tests. It was funny since Justin had just had his OT evaluation, I could see the things she was testing and knew which he could do. The first thing she brought out was a bell, to see if he knew what to do with it, and he went to town with it! There was no doubt that he knew to shake, shake, shake that bell! It was difficult to get him to give it up so we could move on to other tests. He could find the bell under the cloth, he could pick up the small bead (not with pinchers though...), and he fit the circle into the puzzle. He could color with the crayons and fit the peg into the hole. He knew what to do, even if he couldn't always make it work exactly.
Speech was actually Justin's stand out area. The therapist was very impressed with his babbling and sounds. She actually said the words, "I am very impressed" which I get the feeling don't get tossed around very lightly or very often. By this time Justin was getting tired (and even fell asleep while we were talking) so she didn't get as much time with him as she has hoped. We discussed some feeding issues, and she gave us some things to try. We have seen her now three times, and she gives us the most feed back and most ideas in her reports, so that will be helpful.
I brought up the "Magic Age of 2" that the geneticist mentioned when Justin was born. Not because I am wanting their predictions, but because his next DS Clinic appointment will be right after he is 2 and I want to be prepared if there is some big announcement that starts out, "And now we are prepared to tell you how your child will turn out..." When both my kids were born I avoided the words, "always" and "never" for about 6 months because I just didn't think that I had enough experience with them to be able to judge that. Two years seems like a reasonable age, but I wanted to know how the doctor makes the assessment. She said that it is based on how he is doing up until then. For example, Justin was determined to be at about 8/9 months of ability when he was 13 months of chronological age. So using 8.5, that works out to be about 65% of chronological age. If he continues on that same curve, there is a scale that marks his level of impairment (a person who functions at a level of 65% of his chronological age is mild MR- mentally retarded). I am not entirely clear if that is how it usually works, or if there is a chance that he could slide up or down the scale. And I asked if there is any correlation between physical and mental capacity, or if one usually supersedes the other. She said not really, but if there is a choice, it is probably better to focus time and attention to improving speech. You know how little kids are difficult to understand, and people unfamiliar with a child need the parent to "translate"? That's how I envision it being with Justin, and that makes me nervous because I don't want to leave him in a situation in which he cannot communicate his needs or wants. I think that has to feel like abandonment.
I tend to leave the DS Clinic with conflicting emotions. I want them to fix out problems because they are the experts, but when it really comes down to it, Randy and I are the real experts on Justin. They offer some good suggestions, and I am so grateful for that. I am glad we have the DS Clinic and all the other resources we have here because I know so many places have so little to offer. I counted the days to Justin's first DS Clinic visit, thinking we would walk away with a treasure trove of information. Now I think of it more as an opportunity for them to gather information to help others. Sharing what works and what doesn't can only help those who come after us. I think we are so blessed, and I want to pass that on to others.
Tuesday, November 3, 2009
Laundry Day Entertainment
When I fold laundry, Justin plays on the bed with me. This is the first week I have had to be really careful, but he is so busy, he really didn't ever try to crawl off the bed. His favorite game is hiding a toy between the pillows and then diving in to retrieve it. It's hysterical! He gets so proud of himself. I like how he almost disappears and then comes up for air holding his toy.
October Prayer Request Follow Up/ November Requests
And November:
- That darned schedule! Just when we thought things were going well, things changed. In some ways it's not all bad because even if it's not something that works great, at least I can hold out hope that it's going to change again! I don't want things to be too structured, but I need some routine to make sure we don't run out of milk or clean underwear.
- Justin's continued progress in crawling. He knows he can crawl, but he would prefer to be carried. He reaches out his hands to me and whines like it's too hard for him and he wants me to carry him. He is getting heavier too! Someone mentioned today that he is getting bigger as she grunted and passed him back to me. I am hesitant to start praying for his walking, but really that would be nice. It signals the end of babyhood though, so part of me doesn't mind putting it off.
- The Buddy Walk is in less than 2 weeks! I have to pick up our shirts next week and I ordered some special balloons that shipped today. I am so anxious to see them! Our team has about 35 members and we hope to pull in a few more by the 14th. You can check out Justin's Buddy Walk page.
- We go to the DS Clinic again this week. We're getting closer to that magic age of 2 when they can give us an estimate (their best guess) of Justin's future potential. A new doctor has taken over the clinic and I am hoping she is as good as the last one.
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