Speech Evaluation

Yes, it seems silly to have a therapist evaluate Justin's speech given that he is not anywhere close to speaking, but at this age it is more about feeding techniques. We wanted to ensure that we are using proper techniques so that Justin uses the correct muscles which he will later use for speaking. I learned a whole lot actually. The therapist said that when we are born we have an arched palate that eventually lowers and flattens out as we move our tongues and babble as infants. Because of the low muscle tone in DS babies, that doesn't always happen, which then causes difficulty speaking. Justin, however, has a very good palate, comparatively. She wants us to work on flattening it out some more. And she showed me some about how to feed Justin with the spoon sideways on his lower lip to cause his upper lip to curl over to take the food off the spoon. She also gave us some passive exercises to stretch his lip and cheek muscles. And we have been doing well in some things: We are using a shallow spoon to feed him, we brush his teeth (gums) to get that sensory experience, and she likes the bumbo seat I have been using to feed him since he cannot sit up by himself. He can hold himself very straight and he has good posture. She told us just to skip the bottle and go straight to cup drinking. (I think she couldn't do it either and decided it wasn't worth her time since he is as old as he is.) He is not supposed to have a sippy cup because it still encourages the suckling movement rather than the sucking/pursed lip movement. He can use a cup when he can sit up by himself, but we will have to hold it for a while. She even gave him a veggie stick, like a chip, for him to crunch on the side of him mouth to get the up and down movement going, but he wasn't all that fond of it. He did really well the whole time. We had to go to a different office other than the one that is close to our house, so she won't be our therapist, but she was really helpful and explained so much to me! She also pointed out something that I hadn't noticed: Because of Justin's low muscle tone, his mouth hangs open, and his tongue hangs out, BUT right after he eats, he does a really good job of holding it closed. She said that after his muscles are worked, he has more control. It doesn't last for very long, but that is what we want to develop. This is all just what I took for the session. I am still learning the lingo and starting to get some understanding. It will be a long road, but we're in it for the long haul, so we'll see where it takes us!

Sleep Intervention Cont'd

I am really trying to work on the afternoon nap. I figure I can start there at least.

Travis: He slept for 3 hours in his bed and then he woke up crying, as usual (Want Mommy!) so I got him up and we were sitting on the couch when he fell back asleep. He has been wanting to sleep on my shoulder, so I let him since I had Randy for Justin duty. He slept for another HOUR and then I had to wake him to go over to family's house for dinner. So a total of a 4 hour nap. I would like to switch an hour of that to night sleep. Is that possible?

Justin: He slept for 30 mins and then when he woke I went in to reassure him and he cried for another 20 mins and then he went back to sleep for another hour and when he woke, Randy got him up since it was after the 2 hour mark I said that I would leave him in bed. Then he also fell asleep on Randy's shoulder until we had to wake him up to go to dinner. So he had a good nap, in spurts. I hate that it is so choppy, but 2 parents snuggling with their babies cannot be bad! I love Saturdays!

Then we had dinner with Randy's brother and his family who were visiting from out of town. We got another cousin picture, although it is quite a challenge to get everyone looking at the camera. This is the best we could do before Travis started melting down.

Justin was more fascinated with the reindeer than with the camera. We have to work on that before Christmas because I know we are going to want LOTS of pictures then. They look so cute together! And Travis had a blast playing with "Baby Lauren" as he calls her.

Sleep Intervention

Whenever I decide to work on either sleeping or napping, something goes crazy. I think Travis must be able to read because the morning after the previous post he woke up at 5:11 am. And this morning he woke up at 5:23 am. Great. So we start the day sleep deprived.

I will try one more time to get Justin to nap. I really need to do something to make certain that therapy is productive and worth the money. (BTW I called our new insurance and the person with whom I spoke said that it didn't appear that there was a limit on therapy, but everything isn't loaded into the system yet. I can call back later if I want. Sure, I have nothing but time...)

Nap: I replaced the batteries in the sound machine and fired up the water sound. Justin went to sleep beautifully. For 30 mins. Then he rolled onto his side and cried big tears and whined, not really cried, for the next 1 1/2 hours. And Travis, who I had gone to bed early because of his early morning, woke up crying after 1 hour of nap, so I went in and laid down with him to listen to Justin whine/cry. Travis slept and I even did for a few minutes, until the toddler bed got a little too small for the 2 of us. Then I just laid there and tried not to move. Then we all got up and I had to run another errand (it's that time of year) and Justin fell asleep in the car at 4:45 and I had to wake him up at 6 pm. Justin had a good night last night and didn't wake until 6 am, which is the magical hour after which I allow my children to get out of bed.

I think I need to make a more concerted effort to teach Travis his numbers so that he can read the digital clock in his room so that he doesn't get up too early. Either that or get one of the light alarm clocks so he cannot get up until the light is on. The problem is that the light comes on slowly so Travis will say there is light when it is only a tiny bit. He is too smart for my good.

Sleep

One of my biggest failures as a parent is getting my children to sleep. I have let them cry it out, for several hours. I have played music, I have put up dark curtains, I have rocked them to sleep, and many other things. Travis' naps topped out at 45 mins. as a baby under age 1, and now Justin's are at about 30 mins. He doesn't go to sleep well, and I HATE it. Every day is a struggle to get things done in the 2-hour window I have from when Justin wakes until he gets cranky and sleepy. And you know, the two naps never line up for more than...10 mins. Enough time to wolf down some food and read one section of the newspaper.


Night sleeping is okay, but both kids wake up early, before 6:30 am. Travis has been getting up at 6:02 for the past week. He does wake up happy. At the top of his lungs he cries, " Mommy! I'm awake!" (And he's usually dry, with no diaper, so yeah for him!) A friend lamented that her children woke at the crack of dawn, at 7:00 am. I had to laugh. I haven't slept until 7 am in well over 3 years.


It would not be that important except I am paying good money for therapy and that requires a well-fed, alert baby. Every day I analyze the clock and figure when Justin has to sleep so he will be happy for therapy. It is awful! It never works well. Today he took a nap in the car for his 30 mins. and he was still whiny and unhappy. And that means he sucks his thumb and won't do half of the exercises. Now that he rolls over, I lay him down and he rolls over and wakes himself up and cries. Sometimes I let him cry, depending on Travis and he cries off and on for 2 hours. I don't know if he sleeps. Sometimes, I don't care. I know parents obsess about little things, definitely my little thing these days is sleep. Part of me can't wait until they grow out of naps, even though I know it's something that most parents dread. If anyone has ideas, I would welcome them. I am still waiting for the magic solution, or the ah-hah moment when I realize what I have been doing wrong and how I have scarred them for life. I think I have to do that at least once a...day?

Physical Therapy

We had our first physical therapy appointment this morning. It was so great! I really liked the therapist. She did a very thorough evaluation and picked up on things that I hadn't even noticed. I am learning the lingo and the things that the therapists are looking for Justin to be able to do. There are so many "milestones" that I never even knew existed. He can hold items centered with both of his hands, he crosses mid line with one hand to grab things on the opposite side, and he can move his head in every direction. The therapist today noted that when Justin is seated, he does not reach above 90 degrees to grab an object. I never noticed that. And he stretches out his right arm when he is trying to support himself on his stomach (he doesn't keep his arms underneath him). He is REALLY attached to his thumb too, so we have to find something interesting enough to encourage him to take his thumb out and reach for it. She said that overall his muscle tone seems good, but at the joints it seems to be a bit weaker. She even took his shirt off and had me encourage him to move his head and arm so that she could see how the muscles in his back moved. Wow! I was very impressed. We go back on Thursday and I hope Justin is in a good mood to do some good work. She will give us some exercises to work on, but just watching her gives me lots of new ideas.


This was the place that warned me about the potential problem with our new insurance. I also went to another place yesterday, and both places verified my insurance and found out what I owe, and yet they charged me vastly different amounts. So SOMEONE is wrong, and I am hoping it is the place today and that they are also wrong about our new insurance. A girl can hope, right?

A Good Start to the Week (Another Trip to the Doctor)

We started out this morning with a return trip to the cardiologist. It was a super appointment! The chest x-ray showed that Justin's heart is normal-sized; it shrunk from the last x-ray. That is wonderful! That earned us the okay to drop Justin's blood pressure medicine, so now we are drug-free again. And we don't have to return until February! And then if the x-ray is unchanged, we can stay off the medicine for good. That was the good start to our busy week.

We have 5 therapy appointments this week, so Travis went with us to the doctor because he cannot go to therapy and I hate continually sending him away. As a result of his frequent doctor visits, he plays doctor a lot. He fixes out hearts and "checks" us, actually, he does this to anyone who allows it. Usually that is only us, but I did walk in on him fixing the person watching the children last night during our small group meeting. What a good sport! Travis has no doctor supplies (he is getting some for Christmas; please don't tell him!), but like the blower and trimmer outside, he has improvised. His instruments of choice are a cell phone and a leather shoe lace. I am not sure what they are supposed to be, but he uses them all the time.

Also, I am a bit late, but here is a picture 2 months post-op of Justin's chest:

It looks great! We are so pleased. We know it will shrink comparatively as he gets older. He isn't bothered by it at all, and he is rolling all over the place.

It looks like we are getting a new car this week. The car Randy drives has broken down for the third time in about 2 months. We have to get it towed in the morning, but Randy thinks it is bad. I don't mind the new car, but that means we will have to delay the new back door even longer. I think we will paint a scene on the plywood that covers the door so that people can see what it would look like if there was glass instead of plywood. Now we just have to decide: day or night? Night is easier, especially since there are no raccoons to paint, but day is much prettier in spite of the lack of grass.

I Am a Better Mom Than I Thought I Was

I went to the Mother's Coffee this week at the DSAH. I was able to go solo because my mother came to town and she stayed home with both boys. It was a wonderful morning. It was a small group and all the children were younger so I was able to ask more questions and find out what other families are doing. We also had a mother with a child with Prader-Willi syndrome which is more rare than DS, but has some similarities so she came to our meeting to find some support from people going through similar issues. I also met a woman whose daughter was born at the same birth center Justin was born at only 3 1/2 months earlier.



I was curious what other people thought about ECI services that they are receiving. Most of the women said that it seemed like the more serious the issues at birth the more services that are offered and they never really decrease. On the other hand, it is much more difficult to increase services later. One of the women has a 2 year-old son and he has never had anything but speech therapy twice a month. And he is doing wonderfully. He has accomplished all of his gross motor skills close to on-time. Their plan for him is to have things as close to "normal" for his because he will have to live in the "normal" world eventually. She allows for things to adapt and adjust, which I think is good. She summed it up by saying, "So I think in the end, I am just a better mom than I thought I was." I though that was great. Aren't we all? I know I think worse of myself than I probably should, and while it pushes me to do better, in the end it's going to be okay, whatever it is.

The other thing that I think was interesting was we all have a new perspective on odds. There was a .3% chance of Justin being born with DS. There is a 1% chance of us having another child with DS. That's a 99% chance of NOT having DS, but still 3 times the chance we had with Justin. The chance of the mother of the child with Prader-Willi to have had her is .08% and it happened. One of the mothers said that she would like another child, but it's a lot to care for one special-needs child, and even if a subsequent child does not have DS, there are lots of other syndromes out there too.

And then there's trust. While we may not see another child in our future, does God? Will I trust that his plan is better than mine? It is a huge leap of faith for me just to say, "Not my will, but thine be done" but LIVING it is sometimes beyond reach. I fall short time after time, but like I tell Travis, we serve a God who forgives us again and again, and who loves us through it all. I often need it as much as Travis!