Monday, May 31, 2010
Thursday, May 27, 2010
He bit it nearly clean through. So I bought a new cup to replace the one and then I was hoping maybe he would improve and we could get some new ones that he wouldn't eat. So this morning I gave him the new cup and the valve was so new that he couldn't seem to get any drink out of it. He had it tipped over as far as it would go and nothing was happening. So I got him one of the disposable cups with the spout. It requires some sucking, which is our problem with Justin. But he seems to have been doing a little sucking with the other cup, so we thought we would try. The first few tries he couldn't get anything. He shook it upside down to see if anything would come out and then he would try to drink again. When he tipped it up I stroked his throat to try to get him to feel the sensation and suck, and after a few minutes it worked! He drank the whole thing down with no problem! He did some chewing, which I expected, but it would take a lot for him to cause the same gushing action as in the Nuby cup. Plus these are cheap, so when he destroys one, we can move on to another one. And I think now that he has the idea we can try other cups and he should get the hang of it much quicker. We were encouraged to get him to suck (like out of a straw) but the way he tips his cup is going to make that tough. He likes controlling his drinking, so going back to us holding something for him to suck (so he doesn't pour it all over himself) might take some more effort. I think we are going to let this sink in a while (maybe a month?) and then we can try something new. But this was a HUGE step for him and us. I gave him a drink in the car and he wasn't soaked through when we arrived at therapy. That means we might be able to forgo the bib when he eats non-messy meals because the drinks won't be spilling so much. He doesn't like the bib so I am very thankful for this small step in moving past it.
Wednesday, May 26, 2010
This is what they look like:
And this is how they look on his feet. They are confusing to put on because I am tempted to put them on the wrong feet. The velcro goes toward the inside of his foot because the goal is to correct the pronation. They have a little bit of a heel you can see, which also helps putting them on right! That, and the stickers that say "R" and "L"!
Justin doesn't seem to mind them very much, although he is getting used to wearing stiffer shoes. I feel bad that he has to wear socks and shoes all summer in Texas, but I guess it's good that he is cold natured! (Travis took this picture, so it's a little off-centered.)
The only shoes I could find that fit over the SMOs and fit all the criteria (lace-up, flat sole that doesn't come up the front over the toe, tennis shoe) are these boot-style shoes. I went to 6 stores to try to find wide size fours that aren't incredibly long, and this was the best I could do. But with everything on, you can barely see the orthotics. We taught Travis to say "orthotics" and he says it perfectly! He tells everyone that Justin has "orthotics"!
Miss Penny said that it will take some adjusting for him to be comfortable with them crawling and maneuvering to stand up, but once he is up, she thinks he is doing great with them. He is usually barefoot in our house, so this is quite a change for him. I am hoping to find another pair of shoes, but for now these seem to work. Please continue to pray for his progress in walking, and that the SMOs will give him the stability and support he needs to take the first steps.
Monday, May 24, 2010
We had the last of our swimming lessons today, so I had to document Travis' progress. He has done wonderfully in lessons this fall/winter/spring and I am excited for the summer. He didn't quite make it all the way across, but he can do it. He really is a great swimmer and I am very proud of him.
Tuesday, May 18, 2010
Sunday, May 16, 2010
- This week I changed the sheets on Travis' bed and I had Justin helping me. He loves to get on beds and couches and crawl around. Since I was working on the bed he couldn't do that, so instead he stood up and walked (cruised) along the bed to the other end where I was working! I took quite a bit of coaxing for him to do it again, but since then he has been doing it more and more, with no prompting!
- We have discovered that Justin's little play house works perfectly for fighting fires. We can save Justin from the burning building and Travis can put out the fire. Too fun!
- My mom came to town for Meat Day and a little visit. I had to work so she and Randy were home with the kids. She decided to sing "Frere Jacques" to them. She then explained what it meant and told the kids to pretend they were asleep. I can't believe how much Justin understands and does when we ask. He knew just what to do. Both boys are pretending to sleep.
Justin just couldn't resist peaking! And even Travis' stuffed groundhog got into the game.
- Justin is getting so much more independent. He wants to do things himself, particularly eating and drinking. We found that the Nuby cup, which we tried earlier and he just spilled all over himself, now seems to work very well. He liked to bite the top and then didn't actually drink. Now he bites on it and totally destroys the plastic valve, BUT he can do it HIMSELF. So we are thankful for bibs at our house. He now also has made the connection that biting on the valve releases the drink, AND (most importantly) he WANTS to drink. He now will boycott food on occasion and just drink. Hey, that's an improvement for us. And although he's small for his age, I am confident he will not suffer from missing a meal.
- Justin loves books and flips through them really well. He really looks at the pictures and he has started pointing out things for us to name He can't identify things specifically for us yet. (Where is the puppy?) But I think he is imitating sounds to attempt to say the word. I just get all fuzzy-feeling when I see Justin in the middle of a pile of books. His favorite game is emptying the bookshelf. I know, sometimes it's difficult to find the one you really want!
Tuesday, May 11, 2010
He was very intense in his cleaning efforts. There was a little grunting going on.
Travis' toys are much more appealing to Justin these days, which is what is making it so hard for Travis. Every truck we own is now the complete and sole property of Travis, and Justin is not allowed anywhere near it. (Of course any toy of Justin's that Travis wants also becomes his.) "Mine!" is heard echoing through the house at least 15 times a day. I do understand Travis' frustration. Justin is standing up and can reach more things every day, making it more difficult for Travis to have "safe" places for his toys. But Justin is learning more every day about how to play with things the right way (ie. not eating, throwing, ripping, sitting on...) And Travis wants Justin to play fire station with him, so now Justin wants to play by himself sometimes too!
I am not sure what the best answer is every time, but I am just so glad to hear Travis clapping and shouting when Justin accomplishes a new feat. And Travis might be just as proud as we are- he is quick to tell anyone who will listen about all the things Justin can do. That is a comfort, but I know the rest still needs work!
Monday, May 10, 2010
The nurses in the echo area are fabulous. Our nurse had Justin's arms and legs all wrapped up in record time. The tech was great and Justin slept the whole time. The EKG tickled a bit so he woke up for that. And talk about drunk baby! It took all of my hands to keep him together since everything was flopping everywhere! He is pretty strong now so when he throws his head back I had better catch it or his whole body's gonna follow! We went straight into a room to wait for the cardiologist so after a bit I was able to get him back to sleep. And that worked well for her to listen to his heart in peace and quiet. Very unusual for him!
So basically what we are following is his mitral valve, since that was the one thing that didn't get fixed exactly the way they had hoped. The last echo showed minimal leakage, and this one showed moderate leakage. The doctor wasn't too worried though since she said that the machines are very sensitive to color variation and mild to moderate still doesn't cause concern. And she said there would have been some dilation in the left (?) side of his heart if there was a problem from the leakage, which there wasn't. So since he is having no symptoms and the echo looks fairly similar to last time, we are free for another year! And then it will just be a chest x-ray and office visit. So that should be the only sedated echo we have to do. Quite a relief! He did fabulous and fell asleep on the way home. The perfect appointment in my book!
We spent most of our time in the Kid's Area because for some reason that I have yet to determine, Travis wanted to see the foxes. Not elephants, not bears, not lions, not even giraffes or snakes. Foxes. We found one in the VERY back corner of the kid's area. Thankfully. We also found a few other things along the way.
Here's Travis "after" haircut shot. Justin didn't want to be a baby bird that day.
Justin took a trip down the slide with some help from Daddy. Since he took a tumble down the curvy slide he is a bit hesitant. But with Daddy it's fun!
Travis favorite part of any playground has become the firepole. And he can even reach them and slide down all by himself.
Here's a Justin "after" shot sporting his new do.
There was an area of prairie dogs with tunnels and domes for the kids to "pop up" like the prairie dogs.
Jake and Travis from the back side of the tunnel.
There were boards throughout the kid's area with buttons to push to hear different animal sounds. The kids had quite a reaction to the snake and the cricket. They liked those the best!
Here is Jake and Travis brushing a goat. Isn't it cool that God made an animal that would be just perfect for kids to pet at a zoo? So docile and totally unconcerned about what is being done to it. Just right to amuse a child. This was one of Travis' favorite parts of the day.
Travis went first and he was good at listening which way to turn his head, but he needed me to hold his hand the entire time. We had one little oops when Randy nicked his ear. Travis screamed like we had cut it off! He finally calmed down and Randy had to finish with his beard trimmer after showing him that it would not cut him at all. Travis was very leery of his ear during bath and he didn't want us to wash it or even touch it at all.
Justin was much more squirmy. He wanted to see what was going on up there. Randy had to hold his head to get him to face the right way. Justin's hair is much finer than Travis' so that was a bit more challenging, but all in all I think it was a success. Randy is a little bit of a perfectionist, particularly when it comes to hair, so this was a tall order for him to cut hair and be satisfied. I found him doing some touch-ups on Travis the next morning. Travis didn't like the hairy bath that followed the haircuts either!
I have never seen Justin getting his hair cut since I am always holding him for the operation when we are at a barber shop. Too cute! Such a big boy.
Friday, May 7, 2010
There was the standard weigh-in and just like at the pediatrician now Justin doesn't have to strip for weighing. He looks so little on the big scale! They have a very big scale and it's difficult to get him to sit in the middle of it and not move since I can barely reach him! But we were in a room before too long and waited only a bit for the gang to arrive. This was the smallest group ever: no interns and only OT (not PT and OT). The OT and the speech therapist were both new to me but they were wonderful with Justin. This was our second visit with the doctor, who took over the clinic after the other doctor last summer. They have plenty of notes on Justin though since this was our fourth visit. He really showed off and did a great job of "performing" for the group. He was evaluated (again!) and his development was judged at being 18 months for OT, which was in line with what Miss Caroline said a few weeks ago. Speech was about 12-15 months, mostly brought down by his lack of any recognizable spoken words, and PT was the lowest at 10-12 months because of the whole not-walking thing. But he made tons of progress based on their last assessment. OT jumped the most I think, about 7 months from the last visit. Nothing startlingly new came up during the appointment. We were advised to work on the same things we have been doing.
The most frustrating part was not feeling like anyone has any ideas or suggestions to help with some of our problems. I got shut down when I brought up Justin's sleep problems because they aren't in line with apnea, which is the most common sleep problem in people with DS. It goes back to the problem with endocrinology: it doesn't fit in my area so you'll have to find some other answer. I feel like I have to diagnose the problem myself and then find the way to get to the right doctor and subtly suggest ways that they can come to the same conclusion and save the day. The doctors we see are concerned with ONE aspect of Justin and not the whole boy. One doctor for his eyes, one for his ears, one for the heart, one for the extra chromosome, and one to make certain he has all his shots. That leaves me to care that the whole boy is healthy. Sometimes that is too daunting! Yesterday was one of those days. Because I was really counting on some help and it didn't happen. I am starting to hate the word "phase" because lately it hasn't been very "phase-like". It feels like a rut. And I don't have the momentum to get us out. I have been getting sharper with both boys and it makes me mad at myself, both for feeling inadequate to correctly handle the situation and also for being too harsh with them. I am holding on to the past faithfulness of God to get me through this because right now, I can't see much past the end of my nose.
We have one more trip to the Medical Center on Monday to see the cardiologist. We may or may not have an echo, but we have to prepare as if we were having one, so that means no food for Justin and an early wake up because we have to be there at 7:30 am. Thankfully Travis agreed to spend the night with Randy's parents so that's one less thing to arrange that morning. Please pray for him (and them!) since it's been before Justin's surgery that he has spent the night with them. Popcorn and root beer floats have already been requested!
Monday, May 3, 2010
- Travis thumb-sucking: Well, this one needs more prayers. We had almost gotten over his sticking his finger in his nose while sucking his thumb, but now it is back. With a vengance. And he does NOT like us catching him. He hauls off and tries to hit whoever tells him to stop. That would usually be me...
- Window install: Yeah! Fairly painless, but more to go. We still have the screens that were damaged and the first set to reinstall, so it's not over yet!
- Justin's walking: He pulls himself up ALL the time now, so I am in a whole new mode of keeping things out of reach. The couch used to be safe, but not anymore! He cna't get up by himself, but he screams until someone helps him up. And we visited a new Chick-fil-A last week and I discovered that their play area is no longer Justin-proof. You know those climbing structures with the triangle steps to climb? Yeah, while I was finishing my chicken sandwich he waved to me from the top level! The top! I nearly choked as I calmly made my way up to rescue him as he was blocking the top of the slide. He was pretty proud of himself.
- Justin's orthotics: He should get them by the end of the month. I pray that they are an easy transition and that they correct the knee hyperextension without the HEKO brace.
- My job: I have shared that I am a flight attendant, but I never said with which airline. Well, now it's a different one. Please pray that the transition goes well. We are all scared about losing our jobs and for those who still have jobs, there is the fear of change. I pray that whatever the change is that I would look for God's will in it and that I would trust his plan for our future.
- Justin's sleep: He is just not getting rest, no matter how long he is in his bed and quiet. I don't know how to help him. It has been more than a month. He told Miss Yvonne this morning in therapy that he was all done with everything she wanted to do and he yawned all through the session. He needs to be held all day long and he is getting heavy!